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Charlotte's Story: Untreated B12 Deficiency
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- Опубликовано: 22 мар 2023
- When Charlotte received a Vitamin B12 deficiency diagnosis, she never received the correct treatment. Due to not getting any treatment, irreversible damage happened to the nerves in her spine and eyes. Here's how our medical negligence solicitor, Madeline Seibert, helped Charlotte with her case.
Hear from Madeline on how the case progressed and what to do if you have an undiagnosed B12 claim: • Madeline Seibert on Ch...
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It's always depression and anxiety when doctors don't know what it is.....
ALWAYS
Or Lupis😢
Especially when you’re female.
Yes, I was having severe anxiety it actually felt like I was falling while my chest was about to explode. My issue was hypothyroidism and low B12. But they waited about a year to run all the test to diagnose me because the Doctor thought it was depression.
@@claudiablandon8714Are the 2 connected at all? Hypothyroidism and vitamin deficiency?
It's the same protocol for incompetent doctors all around the world. Their mind is filled with arrogance and no space for learning new things. They get so pissed when you suggest them something
This is actually Charlotte from the video. I can't say thank you to those of you who have been kind enough to leave positive and encouraging comments. To anyone who is suffering something similar my best advice is listen to yourself. No one knows your body better than yourself. If you have low B12, especially if you're experiencing any neurological symptoms, continue to go back to your GP. Demand more blood tests, demand to be refereed and most importantly demand the injections. You should be given one every other day, five times to begin with. This is to load you up with B12. After that, they say one every three months but in my experience and going by the comments, that is rarely enough. You can NOT od on b12 and excess levels do not harm you. Apart from some hot flushes but its a small price to pay. Everyone and every case is different and should be looked at and treated as such. You shouldn't have to fight to be heard, believed or taken seriously but unfortunately so many times this is the case. Don't give up, your voice has power and you have worth. Not only that be everyone deserves to have a life as pain free and full of promise and possible. Don't be afraid to argue with the GP, look up articles, ask other doctors and hospitals for their opinions. Most of all believe in yourself and how your body is reacting and how you are feeling. I said in this video I didn't want this to EVER happen to anyone else, ever again and I truly mean that. I believe it should be up to each individual suffer of B12 Deficiency to decide how long they go between injections is. It's something I hope to be able to fight for and one day change. Thank you to Slater and Gordon and especially to Madeline Seibert. You didn't just change my life, you gave me one back that is worth living. My gratitude knows no bounds. All the best everyone and don't ever let someone tell you how you are feeling in your own body. Charlotte ;;'x
@@Trina-iy5kr First of all, I am so sorry to read this. The best and most effective way to get the needed b12 into your system is going to be the injections. I don't know where you live exactly but in certain countries, I know France for example. You can by the solution in any pharmacy. In the uk you can't do that and have to get it prescribed. My advice is go back to your doctor, ask for my blood tests, looking specifically into the b12. Also, ask for inter-muscular injections. They can't harm you, they don't cost much for them to give so they don't have any reason not to offer and give you them. You may have to argue with your doctor a bit but sounds like you more than need them. You start with one injection every other day for five doses. If you're suffering neurological symptoms stay on the injections once every other day until symptoms stops improving. I was on them every day for months. Yes, arms were a little bruised but it did really help. After that they'll say one every three months. Most people who suffer from this, I have found say that isn't nearly enough. Try every three months though and see how you go but don't be afraid to go back and ask for them more frequently. Of course, I am not a doctor by any means, I will advise listening to professionals. However, you know your body and how you are feeling better than anyone else. If something still isn't feeling right, keep fighting until it does. There are doctors out there who will listen, unfortunately sometimes you have to search a bit to find them. I hope that this is some sort of help for you and I wish you nothing but the best. Charlotte ;;'x
Hi Charlotte, how much was your vitamin b12 level?
@@YellowRogueRoseI really feel like I should mention this, I don't know why. But look into Terry Naturally curcumin supplements if you haven't. The curcumin is legit good quality stuff and repairs nerve damage. Worth looking into ❤
I’m so sorry you’ve been through this. This sounds like you have the MTHFR gene mutation where you’re only absorbing maybe 30% of the folate you eat. Other mutations of this gene are less severe, so they hit a little later on in life. This mutation and malabsorption directly impacts every process in your body that methyl groups are involved in. I don’t know what B12 you’re on, but I know that adenosylcobalamin helps to repair the myelin sheath that surrounds the nerves. Hydroxocobalamin helps if you have macrocyctic anemia. Methylcobalamin is a go-to, but the previous two are what help to make methylcobalamin in the folate/B12 cycle. Cyanocobalamin is synthetic and derived from cyanide. It’s very difficult to absorb in people who have B12 deficiencies. You may also want to avoid folic acid, as it is also synthetic. Methyl folate might help. I’m waiting on an order of folinic acid to arrive, as, again, it’s a precursor to methyl folate in the folate methylation cycle.
I’m going through the same situation where my dr can’t get the right tests for me because they’re not covered and I can’t afford doing the testing privately. (I’m in Canada.) So I’ve purchased some adenosylcobalamin from Seeking Health and am definitely seeing some changes in how my body is functioning and it’s only been a few days. It’ll be great when my sense of smell returns and the symmetrical parasthesias vanish. I really hope those vanish.
Thank you for sharing your story! I hope this reaches you and that it helps in any way.
I have this condition and need an injection every three weeks. I can feel when I am low. It helps to hear from someone who has been through this. Thanks 👍 7:23
I was a nurse in a psychiatric hospital and we were told to expect a patient, diagnosis hyperchondria. Her symptoms were headaches and anxiety. Her GP husband, in a small town, made the diagnosis because she always had a headache and she always wanted pain medication. The psychiatrist ordered an MRI on the way to hospital. When she walked to the interview room she dragged her leg and supported herself against the wall. When the psychiatrist saw the results of the MRI, he found that she had a large inoperable grade 4 brain tumour. She lived for 6 months. I believe in getting a second or third or as many as you feel, to get a correct diagnosis.
How sad.
Oh my gosh! I hope they sued
I second that!
❤ I hope she had peace, her husband is an ass
heartbreaking
My daughter, at 12 years old, lost all use and sensation in her legs last year. Doctors, physiotherapists, neurologists etc all didn’t believe her. It wasn’t until I started researching myself and with the help of the B12 society that we found out ourselves what the problem was. The hospital discharged her after a week with no diagnosis, said they didn’t know what was wrong. If I hadn’t of been so persistent, found help privately, she still would have been in a wheelchair now. It’s no life for anyone when it could easily be sorted by following their own hospital protocols on B12 deficiency with neuro symptoms. They even went as far as trying to send a 12 year old to clinical psychology because they were convinced she was lying. Thank you for sharing your story. It will give hope to so many
It is scandalous ordinary people are researching and trying to treat themselves after being sadly let down by the health services we rely upon. No wonder the countries health care system is in the state it is in
Please tell me your daughter isn't a Raw Vegan.
Was your daughter able to fully recover the use of her legs after using the b12? Thank you for sharing your family’s experience.
@@theodorelaurence1790 It was a combination b12 protocol (lots of other vitamins and supplements) that she started to improve. The hospital failed her because they didn’t recognise the b12 deficiency, but saw that her folate levels were low. They made her symptoms worse by prescribing folic acid and not b12 too. We only found all this out after.
Just B12!!!
It's just incredible that the lack of it makes such a disaster of someones biology !!!
I had a similar experience but with (vitamen) D3. I ended up doing my own research after my GP causually mentioned It was "a bit low". He was even offended that I would believe a published Professors work over 20 odd years in the effects of a deficiency of it. I gave him the book I had come across. I believe he read it. I had decided to follow the regimine set out in the book. Abracadabra. All of my symptoms all but disappeared. Gone is the age where Drs are considered gods. Gone should be the era where we patients accept blindly what they say.
Happened to my coworker; I told her to get her D levels checked out and the doctor confirmed saying that dead people had more vitamin D than her lol
@@Blue_Azure101 wow! In Aust the consensus now is that vit D testing is of no value and not worth the efforts to have the tests unless there is indication of a severe deficiency. By that time people who are deficiency are quite sick. I feel for the geriatric population as they are particularly vulnerable to acquiring a deficiency.
@Rachel Heyth What book did you follow Hun? 🤔
They automatically go with surface level diagnosis. Bc people have to have Dr excuse for colds ,simple things, too many people are seeing one Dr, so people that actually need to see drs are rushed through the same. Dr are humans too
@@irene1234 Hi It is a book written by a Professer Hollick. He has studied the vit d necessary to optimal health. Not to be confused with the least amount before someone goes to the Drs. It is amazing the array of symptoms that a incifeicency of it can cause. Even worse for deficiencies. . It seems to me that Drs are on auto pilot and unless the "vitamin" which is actually a hormone are just below the safe range are considered OK. It's a misnomer because our necessity for it are not all the same. All the best.
My dad had 4th stage dementia. Went in the hospital for gall bladder issues. Was B12 tested. His entire body had none. They put him on IV B12. He called me by name & was eating again. My friend’s mom lost the use of her legs. Her dr never checked her B12 levels. Zero, as well.
Heartbreaking. :(
It's sad that certain vitamin levels such as B12 aren't routinely checked in people above 60 as well as in vegetarians and vegans. Many elderly have a B12 deficiency among other deficiencies as their bodies cannot absorb nutrients as well anymore. It should be routinely checked! It could help and save so many elderly people as one symptom of B12 is memory loss and brain fog.
Dr Vernon Coleman's book explained low b12 levels cause dementia.
Losing leg function could also be pottassium deficiency and b1 deficiency as it pulls pottassium out of cells.
There is both tablet and injection forms of delivery of B 12. If they do tablet, you need to follow up to see if your body responds. If there is no change you may need the injection form.
Oh that brought tears to my eyes. The complete change in your Dad. ❤
My aunt was diagnosed with MS after a couple years of testing, and told not to get pregnant. About 10 years later, it was discovered that she actually had a severe B12 deficiency that was mimicking the symptoms of MS. My mom and her 6 sisters all require B12 injections.
my b12 levels show normal on labs but one person told me I might need the Methyl B because I have the MTHFR gene mutation per genetic testing
@Teresa Klinkert if you have that mutation, I do as well, you definitely need the methylated form of b vitamins, and make sure you never take folic acid, only folate, rather methylfolate.
@@roxpar1816 , taking methylated B12 and methylfolate puts you at risk of overmethylation which is not nice to experience. Methyl B12 has never been researched to treat B12 deficiency. You would do better on hydroxocobalamin and folinic acid. Methylfolate will increase anxiety and is 3 times less effective than folic acid. Folinic acid is best to take.
@Pat Kornic I guess people react differently, I've been using a methylated B combo, methylfolate and methylcobalamin for a couple years with no issues. I'll look in to what you mentioned.
@@dundasraine can i just take b12 supplements instead of injections?
I am 80 and my B12 injections have been stopped. I used to have a nurse come monthly. I had no blood tests. I can’t walk. Not for 10 years. You have given me courage to ring and find out why. I am so sorry for your experiences. ❤️❤️❤️❤️
Try eating organ meat and fermented foods. French pate, etc. If you can get some unpasteurized beer and mead, they provide lots of B vitamin complexes. If you had shortages of B12, you are probably short of a range of B and other vitamins. Lying in the sun would give you some good vitamin D.
They stopped all the injections due to covid but they are starting them again. You should get a blood test and then they will see if you need the loading doses again. I did this recently and my B12 was very low so I am starting the loading doses next week. Good luck.
take the pills, you can get them in 10,000 mcg per pill; they work for me.
Try taking b12 tablets?
Did you, or anyone in this discussion, get your genes tested? 23&me is what I did. IF you have the MTHFR gene mutation, then your B 12 levels may be 'normal' according to a blood test---but your body, including your brain, are NOT getting any B12. The injections are the ONLY way to address this.
I had been feeling so tired, exhausted really for about three years. All the doctors would tell me was to take iron tablets and eat iron rich food. It got to the point this year of sleeping all night and most of the day. I had a very difficult time going upstairs to bed and would sleep on the couch. I finally saw a new doctor who did extensive tests and B-12 testing. The normal range for B12 is 300ng to 900ng. Mine was 116. My doctor said he never had a patient that low in his almost 35 years. So he had me get B12 injection every day for one week, then once a week x one month, then one a month x three months. Plus a B12 supplement daily. I feel so much better and so grateful to him for correctly diagnosing me properly. I hope you continue to get better.
The horrible thing is that b12 you can't overdose so even if they weren't sure the fact they were willing to say take iron whcih could indeed cause a problem and not give b 12 just to see if it helped is crazy. Too much iron is bad but you cant take too much b12 so they should have tried the safer thí first. My son right now hes exhausted cant think properly his hair is falling out and they did a blood test but didnt test for b12 also he was taking iron supplements at thw time so his iron looked normal but they didnt say anything about or even ask had he taken supplements. .they just handed us hús blood results on a sheet and didnt even explain anything just the receptionist handed them to us. His teen were loose and his poor hair and his gums so pale..I dunno if its b12 or maybe vitmin d they didnt test for that either... its not his thyroid...its not iron ...but its also not normal or ok.
If you live in Japan they treat you if b12 is500 or below. Plus you can get injections over the counter in some places. Makes you think. They'd rather treat you f0r each symptom and not even mention b12 cuz it's cheap.
the lead in to your story is heartbreaking so glad to hear you got in touch with a doc who cared.
@@Padraigp did your son don't eat properly or before he didn't eat food or did he cut off large portion of food? I mean extreme dieting and all?
@@veereshvastrad3501 no he ate well enough before that you know like porridge for breakfast a homecopked dinner fruit for snacks...but at college he was basically up for the bus for 6.30am and didnt feel like eating...so hed go to college on empty then have coffee at lunch and energy drinks and maybe get a sandwich or a lc donalds and then would be on the train and wouldnt get home till 9 pm when he was tooe xhausted to eat dinner or cook dinner... it was really just not having the time because out transport is so aweful in this counrry. The college is an hour away from our house but he had to stay in the city with his gma and get a train from there for two hours to get in on time. Crazy. He is still pretty exhausted.
There are no words to describe my loathing of the NHS following 5 decades of misdiagnosis and denial.
On a recent visit to Addenbookes AE I was told by a nurse my symptoms were caused by dry skin and I should moisturize. 😂. My symptoms were vomiting, pain, electric shocks in arms and legs. Still fighting for treatment.
Once you realise its the big Pharmaceutical Companies that control what ure to be given...then you realise Most Dr's dnt really give a damn...Its business end of...what pays more
In America we would never get the luxury of being monitored in a hospital for 2 weeks without it costing a million dollars
This is such a reminder of how lucky I was that I went to a neurologist they tested my B12. The next day he called me directly snd told me my B12 was the lowest he had seen in his career at 57! Before I went to him I went to a spine specialist and had an MRI snd they saw a mark on my spinal cord. The tech’s report said one of things it could be was due to a vitamin deficiency, he actually scoffed at that! Told me I may have MS and to go to a neurologist. So lucky that my mother knew of a very good neurologist. I know a lot of neurologists won’t even think about B12 deficiency.
I wish more doctors knew about B12 deficiency and pernicious anemia. I shudder to think how many people like Charlotte are out there.
Are you taking b12 vitamins?
Could you please share what kind of b12 are you taking ?! And what dosage and brand?! Greatly appreciated 🙏
@@moniryousefian8782 When the bloodwork of my loved one came back in the 100s, the biochemist Naturopathic Doctor advised it should optimally be in the 800s and prescribed Genestra brand of active form methylated chewable b12 methylcobalamin with b9 L-methylfolate. My loved one was to take 2 tablets a day, until signs of over methylation appeared a few months later and then drop to one a day. Also took a quality brand of active form b complex to keep them all in balance. Also took a dna test which confirmed COMMON gene variants which affect approx 30-60% of the population by basically impeding conversion of b vitamins due to so many foods being "fortified" with unnatural synthetic forms such as cyanocobalamin and folic acid which become toxic to the body and destroy digestion enzymes and energy metabolism in addition to affecting neurotransmitters and more. Active form methylated b vitamins made a world of difference for my loved one. I highly recommend seeking advice from a biochemist Naturopathic doctor who is aware of epigenetics. It can be the difference between barely existing and a life worth living again. Worth every penny to have expert advice for your specific situation to ensure cofactor vitamins are in the correct forms and doses and if any confounding Genes are at play you can get the appropriate support for that also. ♡
Hiya, if it brings you any comfort I'm in 2nd year of medical school and we just got a whole lecture on B12 and pernicious anaemia and the TLDR of that was if someone presents with tiredness think about possible anaemia and also include B12, folate and iron nutrient levels on the blood test. I think Charlotte's experience is actually shocking but just goes to show, if all you have is a hammer every problem is a nail.
@@pixelatedartistslook at the ck nice guidelines
Says Injections til you are not getting any benefits. So every other day I take.
But mainly don't stop til no further improvement.
Nor just put on every 2 months.
It's in nice but most drs don't know
So hard to fight, especially when you are sick.
My mum suffered B12 deficiency which was never treated, she developed dementia, when another gp actually gave her medication she came back to me for several weeks but she had been left to long without. A counselling client was deeply depressed, tired, very forgetful and suicidal. I suggested she got tested for B12 deficiency. Hey presto she was deficient, had B12 injections, completely new woman! So maybe we should all take B12 supplements. Thank you Charlotte.
My mother developed this as well, and I don't think they ever checked her B12. I am kicking myself for not knowing to ask them to. She is gone with the angels now. Bless you.
B12 deficiency is regularly missed and mismanaged by the NHS and UK medical system for the simple fact that they do not study this, or any type of nutritional health, in medical school. Doctors do not understand how the gut works, and so cannot give us advice on how to manage gut-related issues or dietary-related issues. Yet, these sit at the root of most of our health ailments.
The system is broken, no individual GPs. I know we hate to badmouth the NHS in the UK, but it's about time we did. The NHS was set up for a reason - free healthcare in a post-war economy. Well, that was 70 years ago now. So it's high-time we REFORMED healthcare and I'm not talking about just for the people who need it. I'm talking about reforming it for the people who work within it.
They are not equipped or skilled enough to help the general public with nutritional-related conditions. And this is a symptom of POOR and INADEQUATE training. It's also down to GPs EGOs, since they've been led to believe they have all the answers to good health.
Charlotte could make a claim because she was left without a life. For others, the damage is still there but harder to prove. So, the NHS will continue to engage in gaslighting and cover-ups until WE TEACH THEM NUTRITIONAL HEALTH AND GUT-RELATED HEALTH.
The NHS is no longer fit for purpose. If we can develop Artificial Intelligence, we can train Doctors in nutritional health.
It really is THAT SIMPLE
@@shellytwoshoes6130 good luck getting a Doctor to agree to use their time to be trained by a non-medical practitioner.
Doctors went to medical school. They should know about B12, shouldn't they? At least a hematologist or a neurologist?
Where is the formal education change? Doctors in the UK are notorious for never showing up to international conferences or CPD training. I'd love to know how many sign up for Tracey Witty
@@munkami The two consultants that you named that should know about B12 deficiency ''often don't''. Charlote revealed this herself. The non medical practitioner Tracey Witty has a PhD.
@@munkami They only do 4hrs education for nutrition and 1.5hrs for sleep
Same in the US. Unfortunately, naturopathic doctors are really expensive, so people end up "doctor shopping" simply to find someone willing to listen and agree to run tests.
Trust me. The U. S is no better. Doctors never ever think of nutritional deficiencies
Hi Charlotte. As the wife of an attorney who handles cases like yours in the US I want to thank you for saying nice things about your solicitor. They will so appreciate the kind words. If I compare them to my husband, they will be warmed to know they have made a difference in improving your quality of life and making sure you will ‘be okay’ in your day to day responsibilities. That’s just my humble opinion, of course. Thank you for sharing your story.
thanks Judi - I agree - lawyers have such a bad reputation - really hurts people who love them (& I'm sure the person themselves). my dad was a barrister and solicitor - even with dementia in a secure resthome the staff would _always_ say - oh your dad, such a gentleman - always helping others, taking care of others - that is who he was = spoke up for others in court - made sure legal documents had the right words to protect his clients. *thank you*. much love to you and your husband 🧡
Please tell your husband many of us have great respect for his profession. Without him many would make some very large mistakes in their lives. There’s bad apples in every profession, we just aren’t as affected by their poor behavior or performance. A good attorney is worth their weight in gold. Tell him to hold his head up high for me.
I’m just recovering from b12 deficiency. I had a form of short term dementia because of it. My eyesight has suffered, my memory has suffered, I’ve lost loads of muscle, doctors don’t tell you how serious b12 deficiency can be. You just think that you’re a bit low on some vitamin. It’s much more serious than that and we should be made aware of it.
Hello. How are you now?
We should! We need to know more about this topic!
This could easily have happened to me. I became B12 deficient after cancer treatment but by fortunate chance a good doctor picked it up immediately and I've been on injections ever since. Your story is so scary, Charlotte, especially doctors blaming depression and anxiety.
Me too. Now i am in welchear. 2 years. I See only 30%.
After radiation for cancer, I just never got strong again. I kept trying to push on. It got harder to think. I am just glad my internist picked up the B12 deficiency at my annual check up. I was not going to get stronger without it.
Charlotte's story makes me very thankful that I have had the doctors I've had! I was diagnosed with B12 and D3 deficiency years ago and thankfully haven't suffered permanent damage. I have to take a level of D3 that would be toxic for the majority of people. My levels get checked annually to ensure they're where they need to be. It really makes me angry when a doctor tells someone that something is all in their head. It's invalidating the patient's concerns and shows a lack of diligence and scientific scrutiny. Doctors are dieties but ffs the "it's all in your head" attitude harks back to the days when period pain was all in a woman's head via males who'd never experienced it. I'm glad Charlotte's condition finally got addressed but angered that she now has life long health concerns from a lack of a timely diagnosis!
I just learned today that you need to take A,D,E and K will some kind of fat..nuts avocado type things. It says these vitamins are fat soluble and require fats to absorb the vitamins. Also when taking vitamin D3 you need to take K2 as well. I wish I could add a link of the RUclips video I watched about it. Good luck.
You may have a methylated b vitamin mutation which would mean you'd have to take methylated vitamin Bs, otherwise it'll be really hard to absorb and you'll have to take a crazy high dose
@@sallyburkett-caskinette8723 Read "Vitamin K2 And The Calcium Paradox" by Kate Rheaume-Bleue
I have to take calcitriol, which is the metabolised form of vitamin D, because even after really large doses given by injection, my levels didn't increase. I can't metabolise it. They don't know why, nor do they care. My blood levels remain low as the medication bypasses that stage, but there's also no blood test to show it's working. The only thing I did have was a calcium test a couple of times at the beginning as it can cause a fatal increase in that if they get the dosage wrong. I've been completely refused treatment for my b12 deficiency though. I used to get regular injections but my new doctor removed them when I moved to a new area, even though my levels are super low. Everything I've gone to the doctor for has been "in my head," including my POTS and EDS. Doctors are useless.
They are trying it with me now and I'm a 64 year old retired banker, won't have it that my symptoms are B12 related even though I have Gastric Parietal Call antibodies, my bloods say normal B12 so the symptoms are in my head. Go figure. I had to tell them that the research shows that if you have Intrinsic Factor Antibodies they interfere with the B12 test assay so it gives a false high. Now waiting for that test. It shouldn't be up to me to tell them what tests are appropriate.
Most people aren't confident enough to challenge their GPs, I wonder how much damage they do to people.
I require B12 injections and so did my Nan. She got those for many years then moved to a different long term care facility who just gave the pill version. Within weeks, she was unable to walk, sleeping all the time and disoriented. My mom kicked up for the injections to resume and after a struggle with management and the dr, she got her injections back and came back to a bit more active life. I think this happens more than people realize.
In 2020 I suddenly went into a state if constant fight or flight. I struggled to sleep and to work. My eyesight was affected and everything looked different is the only way I can describe it. I went to my gp who told me I was anxious about the pandemic. A few months later with no change, I tried again. I had bloods done but my level was 450 so was deemed normal. I didn't realise that as I'd been supplementing with b12 for years that this meant nothing. In fact, my levels should have been closer to 1000 on this regime, so I was definitely deficient. A few months later I lost sight in my right eye and couldn't walk most days. By this time I'd given up hope as I'd only been offered antidepressants and I knew it wasn't in my head as I'd been told. I didn't bother my doctor again but researched myself in that state. I had to stop working as I'd collapsed twice and was struggling to breathe. Each day after that was spent lying down twitching hallucinating and struggling to het a breath. I can't describe how terrifying this was. In desperation, and after reading information from the b12 society, I booked myself in for a private b12 injection.My friend almost had to carry me there. Within an hour of having it, my sight improved and my panic attacks stopped. I knew I was on to something. That was June 7th 2021. I inject every day now and have my life back. My gp wants me to stop injections immediately as I don't have a deficiency and I'm supposed to call them today to be told off. I would be dead if I'd listened to them. They need more education to stop all this needless suffering. I hope this helps someone.
Hello. Have you tried injecting less frequently? If so, what happens? I've been injecting myself every day for the last several weeks. I have tried skipping a day, and then I can't sleep at night (at all). But I'm nervous about daily injections because there are risks. But just wondering -- do you have any hope of being able to give the injections less frequently (in the future)? Or any plans to slow them down? Most protocols say that you should get up to a certain improvement level, then be able to slow down the shots. I just don't understand why that doesn't seem to be happening to me. Even one day without an injection is really bad. And the injections have their own side effects (in my case, bloating), so I really don't want to keep needing them every single day. That's not healed. I never needed them before.
Thanks for taking the time to put this information online where people can make decisions for themselves in regards to their health. I am in Australia and can tell you that professional negligence is alive and well down here as well. I can't speak for the UK but I can tell you that is close to impossible to prosecute a doctor down here and this is what is causing the problem I think, they can't be sued so they don't need to worry about being professional and giving their patient a detailed examination. They just want the money from the appointment and then get you out the door as fast as possible. It's pathetic....
@@TinaWillis What risks. The risk of feeling better. The World Health Organization has never placed an upper limit on B12 because there have never been any recorded cases of B12 toxicity. The BNF clearly states if one has neurological damage caused by B12 deficiency, injections are every other day until no further improvement. And that can take years.
That's funny!!
Many deficiencies share similar symptoms.
It could be B1, B2, B12, or D Deficiency.
Also, there's something called placebo effect.
@@crczr funny how placebo never fixed my issues when we found problems and fixed them, until we found out I had a parathyroid adenoma and got that sucker out. Gee I wish placebo worked for me!
I hear this a lot. The treatment, or lack there of it from GPs is disgusting. They just don’t care! Thank you to Charlotte for sharing your story. We need more testimonies
I went through 6 doctors to find this out but once I was unable to work I lost my insurance making medical care not possible. No paycheck or insurance makes it hard. I can’t get injections so I take the B12 by pill. Nothing else I can do for now. I try to walk often but if I walk too long the pain is ridiculous. Thank you for sharing your journey. More doctors should be held responsible for their labeling people as “it’s all in your head”
I'm not sure how you will find a way to a supply of injections but it sounds very much that you are in need of them perhaps for the rest of your life.
@@shellytwoshoes6130 It is hard, my diet has changed drastically and my Daughter was able to find a liquid B12 as well as a B complex that I will start as soon as it arrives. It was suggested by her friend who works in helping people change their diet for specific illnesses. I have 4 years until retirement and hopefully by then I can get help if I haven’t found a doctor to work with me by then.
Consider checking your vitamin D levels. The B vitamins need vitamin D for your body to utilize them. It should be a standard practice to check vitamin D levels for everyone in my opinion, ESPECIALLY WOMEN!
@@amechealle5918 If your stomach doesn't make IF Intrinsic Factor, then you won't be able to absorb B12 not matter what is in your diet.
@@notimpossible4294 That's true. Also iron. B12, iron and vitamin D deficiencies have some overlapping symptoms.
God Bless you for doing this video. I had the same thing happen to me in 2013. I had been trying to get help for years until I wound up in the ER completely numb from the waist down. I am fortunate that I was put on B-12 injections right away in the hospital and have continued giving them to myself. I was made to feel like everything was in my head for so long. I totally understand the sleeping for 20 hours thing. It’s no joke. And most of the time I could have kept sleeping longer. Your video is bringing awareness so thank you!
Can't believe how bad your symptoms were. I personally had an extreme vitamin D deficiency. I think at this point at the very minimum everyone reading this should be taking a whole foods based multi vitamin everyday! It can't address bad deficiencies but it will atleast give you some of the nutrients you need. But vitamin D and B1 and B2 deficiencies are very common as well.
@@lotsoftorque3632 Every person should have their vitamin D level check regularly ESPECIALLY WOMEN! The blood test is rather inexpensive, no reason for your doctor not make it a standard test. Vitamin D is very important to many functions in the body. Vitamin Bs are very dependent on vitamin D for the body to utilize. Without vitamin D your body expels the B vitamins unused in your pee.
I have taken my vitamin supplement bottle, turned it over and began learning what each vitamin and mineral does in my body. Armed with this information I find myself more able to ask informative questions of my doctor. I have done the same research regarding the lab results from the bloodwork ordered by my doctor.
There is so much new information in the medical field, asking INFORMED questions can be very productive for both you and your doctor.
I am also researching the nutritional values of the foods I eat to determine the quality of my diet. What I am finding out is that my diet is woefully poor, a huge shock to me. Now I am learning new recipes that will provide me with the nutrition my body needs. Not only do you need to know what food items, ie: lean meats, leafy vegetable, fruits, etc., you need to know how to include them. That means translating them into recipes you like and being sure you eat those recipes as often as needed. In other words personalize your recipes by taste and nutritional values.
What were your b12 levels?
@@yoli8964my B12 level was 212 when this happened to me.
Years ago, I had some muscle tremors and had some testing done as my father had passed from ALS, which also exhibits muscle tremors. The diagnosis was that my B12 was extremely low, so I started injections to increase it and sublingual B12 to maintain after the injections. The testing also showed that I had some peripheral neuropathy that they attributed to the low B12. The peripheral neuropathy wasn’t too extensive, which was good as it’s irreversible. For 10 years leading up to all of this, I was diagnosed with Gastric Reflux. I was told not to over eat, especially spicy foods and don’t drink too much alcohol, oh and here’s a prescription for Tagamet, for when the pain gets to be a little too much. It just never went away. So, I did my own research and the next time they were doing a blood draw I told the Dr. that I wanted tested for H.Pylori. He said that he doubted that was involved, but I told him that I wasn’t really asking. Tests came back positive for H.Pylori and after the 1st does of the antibiotics, I felt better than had in 10 years. I’m certain now that H.Pylori damaged the ability of the lining in my stomach and large intestine to absorb B12 and was the cause of all of my issues. Sometimes you just have to do your own research.
So, if you're experiencing issues being discussed in these replies and have also been told that you have Gastric Reflux or an Ulcer, you might want to get tested for H.Pylori.
Any gastric problem can make the absorption of B12 problematic
Antireflux and/or antacid medications may interfere with absorption.
The list of medicines that can make the absorption of B12 problematic is long and endless.
I recently discovered that living in a house with mold can also create problems with B12 absorption
There are also studies on this: pubmed.ncbi.nlm.nih.gov/17982599/
I am 67, and for many, many months, I have had very weird symptoms all over my body. Itching and resulting numbness, painful knees which ruined my walks which I love. And constantly tired. Just walking around a supermarket felt like a long hike. Pins and needles, heart palpitations, heavy and painful lower limbs from hips down etc. The list goes on.
I was told I had fibromyalgia, and maybe I have. But not severely.
I have now started taking B12 supplements and the change is amazing. I’ve felt better and more energetic than I have for a long time. And, as a vegetarian of thirty years, I don’t eat the foods which contain that vitamin.
Obviously, my deficiency wasn’t as bad as this ladies, but it’s no fun either way.
It's not good when we are left to diagnose and treat ourselves but the B12 and D3 problem among the elderly is no doubt costing the country a lot more than the price of the treatments. They need to turn their attention to prevention rather than costly cures.
Humans aren’t meant to be vegetarian
I am male and had it from the age of 27. Took years to properly diagnose. A doctor later (looking at me a bit incredulously) took a reference work off the shelf that told him 'this condition is unknown in males under30.' Well.
Born and raise in Iowa, live in OK: it took doctors 59 years to diagnose me with 6 autoimmune diseases. A rare kidney disorder called Distal Renal Tubular Acidosis (dRTA). And now rheumatoid arthritis, connective tissue disease, degenerative joint disease. (had my first case of avascular necrosis at the age of 6y/o. So I've been in pain all my life). And I too have a B12 deficiency, and Hypochromic Microcytic Anemia.
Most of my doctors dismissed me with being lonely and to get hobby, take long walks, etc because they could not find anything else wrong with me.
Except they were ignoring what the blood tests were telling them. 1. my kidneys were failing way back at 6y/o. My nephrologist told me chronic kidney disease gets misdiagnosed until they see the patient. He said we look to see if there is chronic anemia present. He said its the first sign of a kidney disease. Btw, did you know that folic acid or D3(vit D with folic acid) is needed for the bone marrow to make the B12. Check the blood for Hypochromic Microcytic Anemia. Left untreated the body ages way before its time of old age.
I am so sorry that youre going through this. Thank you for writing all this. Im going to get myself tested.
I watched Sally Pacholok's dramatised documentary video on youtube, about the B12 deficiency problem. She does mention the need for folate, alongside the B12. I think that is the synthetic version of folic acid..?
As an ER (A&E) nurse, she noticed a lot of patients in crisis, with possible B12 deficiency symptoms, who were being diagnosed with other illnesses.
She had had a B12 crisis of her own in the past, I forget the details. So she was tuned in' to the issue of testing for B12 deficiency, before going down the wilder tracks of mistaken diagnoses. But doctors and the hospital management were not. They opposed her speaking to patients and doctors about B12. I was surprised she wasn't dismissed, as she could harm the hospital's care quality reputation. She wrote books despite their disapproval. One is called Could it be B12?
If you watch Dr John Campbell's videos about vitamin D, they are also interesting. He explains the recent medical trial results. He takes Vitamin D and takes vitamin K with it. I don't know why. He recommends a dosage of Vitamin D that is safe to take, i.e. way above the UK and USA's national recommended daily intake.
Your body hates plants. sorry you are going through this. I am in a similar boat. To fix my problem I had to change my diet. Fruits veggies, tea, coffee, wheat rice, any grains are full of built in poisons and those poisons are blocking vitamins and minerals. The poisons are called oxalate and they damage nerves, tissues and organs. Anything other than meat and high far dairy is Full of poisons and damage your health. Plants cause diabetes. Our bodies are not designed for their sugars. Their sugars crystallize in our bodies and start cutting our insides, that cause inflammation and our immune system responds by attacking our tissues trying to solve the problem. You must go carnivore as thet is what we are. If you do not, you will continue to decline and insure more chronic illnesses. Get the book, "Toxic Superfood," by Sally K. Norton which will explain in detail what is happening to you and why. People have been brainwashed that fruits and veggies are healthy, they are far from it. Good luck.
Sadly this is not rare, Pernicious Anaemia (B12 deficiency) is an incurable, disabling and fatal illness if not treated properly. Unfortunately Charlottes story is not unusual, the lives and health of thousands of sufferers are being put at risk by uneducated and ignorant Doctors who constantly fail to diagnose the condition and then blindly fail further by not treating it aggressively or in a timely manner. Once neurological or neuropsychiatric symtoms are present the UK NICE guidelines actually state that B12 injections should be given every other day until such time as they have resolved or there is no further improvement. When treated in this manner the nervous system can and does heal and damage can be reversed. Very few Doctors are even aware of this and even when this guideline is bought to their attention, refuse to follow it due to lack of nursing resources and the costs involved in the administration of the injections. As injectable B12 is not available OTC without a prescription in the UK many sufferers are forced to source this from other European countries where it is freely available in order to self inject and regain their health. The cost of doing this works out at £1 to £1.50 per injection. Their only other option is to pay extortionate amounts to have them done at beauty clinics where they are freely available. It is not a drug, it is a totally safe water soluble vitamin that many need to stay alive and in good health. The 12 weekly injections given by GP’s are the equivalent of a starvation diet, enough to keep us alive but not to reverse neuro damage already caused nor to enable us to function adequately. To my knowledge there is no research to back up the fact that injections that 12 weekly injections are adequate treatment. There are organisations in the UK that are working tirelessly to educate and reform the current guidelines and treatment regimes as well as to have injectable B12 made available OTC in the UK. We do not deprive diabetics of their essential insulin so why is it acceptable to deprive B12 deficiency sufferers of the essential vitamin they need to keep them alive and healthy. I was lucky in that when I was eventually diagnosed after an initial misdiagnosis I joined a Facebook group where I gained the knowledge that my Doctors did not have and I credit that group with the fact that today I am able to be writing this comment. It is a sad state of affairs when a Facebook group can make the difference between someone suffering permanent disability and having to seek compensation for this and being able to lead a relatively normal life. Charlotte if you read this I am truly sorry that you were failed so badly but hope that telling your story will help raise awareness and perhaps help others to avoid the same suffering.
Great comment Elaine, I can't think of anything else to add, think you have it covered. The group . ? Was it Pat Kornic's ?
@@shellytwoshoes6130 Yes it was indeed! In my opinion Pat is one of the most knowledgeable people in the world of the subject of B12 deficiency. It takes a huge leap of faith to decide to trust the advice of a Facebook group over that of your Doctor but I am so glad that I did and I certainly have no regrets! I was honoured a couple of years ago when Pat asked me to join the group admin team and help with the group and I like the rest of her team have made it our mission in life to try to prevent others having to suffer what we did. Some of the stories we hear from new members are heartbreaking with so much suffering caused unnecessarily. It would be very interesting to know whether Charlotte did eventually receive the correct treatment and whether in fact she is still getting this, because as we know, whilst there is no quick cure long term treatment of every other day injections can improve even SADC. We have group members who are still seeing improvement over five years into treatment.
I developed Ataxia due to being ignored when Inwas exhausted had yellowed skin,and lost feeling in my feet…someone asked me had I been drinking one morning because they said I was staggering all over the road..that was 6 months after I first told the doctor..I went again ,had blood tests and told they can’t tell me what was wrong till results came….Diagnosis PA and peripheral neuropathy….I was told during Covid that I couldn’t have my injections. I didn’t need them as my liver had 2 year’s supply of B12..My doctor has never listened to me that Inhave pain and cold legs ,..I have a new doctor sonInam going to ask him for more frequent injections.
I am afraid I class some GP,s as a Jack of all trades and master of none…😢
Knowing that one well known B12 deficiency symptom is depression and mental problems(in the older age group its often mistaken for dementia) its astounding that these doctors and neurologists tell these patients its depression and mental problems "all in their heads" and yet not see the connection and at least exploring that possibility first.😢
These are also the medical fraternity that tell you not to search online for medical answers as they aren't reliable which is so ironic. Always do your own research, it can save your life.
Am an older person and have had exactly same experiences with the doctors I have seen so far about 8 , and they put all my grave symptoms shaking, unable to walk properly, lost 14 kgs, unable to stand in the bathroom to have a shower, unable to drive, heart palpitations , frozen foot and in the most miserable condition, sent back home from hospital, when they know I have nobody to look after me, am in dispair. Being diagnosed with deficiency b 12, but doctors stop giving me injections 5 years ago, and am crying and begging doctors to treat me , am 76 years old and I do not deserve such the appalling experience
Am in Australia where an abortive pill will be given more easily than an injection of a simple vitamin, gross medical negligence
Praying for you Maria!
Please read @elainedavis100 comment, about 6 comments above yours. Take her advice. God bless you
I wonder what a mostly meat diet might do. It could be helpful.
Try to get the strongest B12 supplement you can, or order the injections from an EU country.
They are £1.50 each, and you just put it in your thigh, it's not like trying to find a vein, it's for the muscle. God help you
My doctors also did not listen to me when I was becoming gradually more ill during the Covid pandemic. I was also severely fatigued and extremely weak, having great difficulty walking up and down the stairs or even around the house on one level. I was constantly light-headed, dizzy and nauseous. Their answer was “you just need to lose weight and exercise”. I knew it wasn’t just down to being overweight, but as they refused to help me, I decided out of pig-headedness to do as they say and see if it worked. I lost six and a half stone over about a year, but my symptoms continued to worsen. Fortunately for me, my endocrinologist for another condition ordered a barrage of blood tests prior to a phone appointment, as he was my new endocrinologist. It turned out my B12 was severely low, as was my folate level. He diagnosed pernicious anaemia, but even then, he had to fight my corner to get my GP to agree to give me the B12 injections!!! I’m fortunate that I haven’t had any lasting damage (at least I don’t think so). I’m angry that they didn’t take my concerns seriously.
I am baffled the specialist had to fight your GP
Hello Helen, I went through a similar ordeal. I was B12 deficient already a few years before I got covid and even got a thromboemboly from it. But when I did get covid in March 2020 it turned into long covid for me. 8 months of having the hardest time walking just a few steps. I couldn't taste, smell and work for 8 months. Worst exhaustion, fatigue and brain fog. I couldn't concentrate for more than 10 minutes. (I was used to being able to concentrate hours on end before as I was a student.) I was dizzy even when I was sitting, had an unnormal high pulse even when sitting or lying. I thought exercise would help which is why I walked regularly. I walked as slow as a 90 year old grandma but still had the worst high pulse and needed to take breaks every few meters which I was quite ashamed of. I walked so slow but it exhausted my body as if I were climbing Mount Everest. Fortunately it got sooo much better after taking B12. I took vitamin B complex which is a mix of all B vitamins in the correct proportions to each other.
Sorry for the long text! How are you doing today? Are you still taking B12 and are you getting your B12 levels checked every now and then?
@@Dispatern physically much better thank you. I’ve just found out though, that my positive test for intrinsic factor antibodies in the 90s should have been an automatic diagnosis of pernicious anaemia, and I should have started treatment then, but the haematologist told me about the antibodies but sent me away, saying there was nothing wrong with me - with absolutely no follow up either!!! So I’m now fuming that my decades of chronic fatigue may have been down to PA after all.
@@helenhill9482 It's great to hear that you're much better now! I hope you're getting better every day.
Wow, I have no words... As much as doctors can save our lives they also have the power to destroy them. Things like this makes you wish to have a time machine just to give your younger self the info about the doctor's neglect so that treatment can be started right away and so many years later. How come we have to educate ourselves on medical topics if we want to get the right treatment? It shouldn't be our job to do... Hearing so many stories of a doctor's neglect or misdiagnosis makes me so furious and sad. Also when the doctor doesn't believe their patient. This happens more often to women. We're not taken as seriously as men are and then the doctor blames our symptoms on psychosomatics, stress or hysteria instead of finding out what we really have. Very sad.
@@Dispatern thank you Selene. I’m so angry about the whole thing and looking into taking it further. You’re right, it shouldn’t be our job to research our conditions and we get criticised for doing so, but we have no choice! It’s what THEY are paid to do. Wishing you well also.
B vitamin deficiency can also cause debilitating peripheral neuropathy. Proton pump inhibitors like Prilosec further exacerbate the issue because they strip your body of B vitamins and that can cause nerve damage. Peripheral neuropathy can come in the form of random stabbing pains in your arms and feet that can wake you out of a deep sleep because your nerves short circuit basically. It is very painful. Make sure you have satisfactory B vitamin levels in your system.
Just fixing the symptoms won't work in the long run. sorry you are going through this. I am in a similar boat. To fix my problem I had to change my diet. Fruits veggies, tea, coffee, wheat rice, any grains are full of built in poisons and those poisons are blocking vitamins and minerals. The poisons are called oxalate and they damage nerves, tissues and organs. Anything other than meat and high fat dairy is Full of poisons and damage your health. Plants cause diabetes. Our bodies are not designed for their sugars. Their sugars crystallize in our bodies and start cutting our insides, that cause inflammation and our immune system responds by attacking our tissues trying to solve the problem. You must go carnivore as thet is what we are. If you do not, you will continue to decline and insure more chronic illnesses. Get the book, "Toxic Superfood," by Sally K. Norton which will explain in detail what is happening to you and why. People have been brainwashed that fruits and veggies are healthy, they are far from it. There's another book, " PLANTS ARE TRING TO KILLS US." If you read these books, I guarantee you will understand it all. Get the books because you need to slowly eliminate the poisons as not not oxalate dump.
I know someone who was prescribed B12 injections. But she neglected to give herself the injections. She almost died. She’s unable to walk. After I saw what happened to her I asked my rheumatologist to check my blood for B12. My results were low normal. Then I started taking b12 sublingual I ordered from Amazon. After 4 months my bloodwork was in an optimal range.
What brand ? Dosage etc
I suffered for years with weakness and generally being unwell and super susceptible to every bug going around. Finally a doctor tested my vitamin B levels and told me he couldn’t work out how I even got out of bed in the morning as my b levels were so low. He said I would have died within months. I was diagnosed with pernicious anemia. My aunt died of it in her twenties. I was lucky I finally saw the right doctor
Same here, although my Aunt was older. I'm glad you got a Doctor who treated you
Eat some liver…problem solved.
@@swisschalet1658 those with pernicious anemia can't absorb B12 from the diet due to a missing intrinsic factor. It's an immune disease so no, It's not as simple as eating liver.
@@leeyeomans68 they have a missing intrinsic factor because their gut lining has been stripped of the necessary mucus layer because of their deficient diet. The mucus layer is supposed to rebuild and replenish itself daily into a thick, strong matrix of interlocking fibers that assists in the absorption of nutrients and the rejection of toxins across the intestinal wall…like a very well tightly woven fabric. Instead, a deficient diet produces a thin, watery, loosely bound fibers with gaping holes…like a flimsy gauze fabric…resulting in an insufficient mucus layer that cannot supply the necessary factors (not just “intrinsic factor” as they call it), but MANY factors necessary for proper nutrient assimilation. So you see, the deficient diet caused what they are trying to convince you is “genetic”…which is another medical system lie. Often the MOTHER’S deficient diet caused the infant to be born with a weak system…that can be rebuilt if you know what foods to consume and how to prepare them. But people would rather like to believe that they must take a pill instead of doing the hard work to actually heal the body.
@@swisschalet1658what do you have to start taking to heal?
Don’t you just hate that the doctors tell you it’s in your head because they don’t know what’s wrong!!
At 50 became b12 deficient. The doctor's just laughed at me, so I got private injections and it worked. The rest of the time I take high dose tablets and now I have a life again. Symptoms were numbness in arms and legs, memory loss and panic attacks. I thought I had MS, it's very scary when doctors just laugh at you and you have to hold down a job.
is there a way to litigate against this type of medical incompetence? and how are you faring btw. did you also have tinnitus
I have had a similar thing happen to me, it makes me so angry! I have gone to a private clinic as well.
This happened to me too. I am 40. Thought I had MS as well. Vitamin deficiencies should be looked into further.
I am so sorry this has happened to you! I want to thank you for putting out this video as I have recently gone through similar symptoms with doctors telling me I was anemic but mainly had anxiety and depression and referred me to a psychiatrist! I knew it wasn't that and have radically changed my diet and begun getting B12 injections and feeling like a completely new person now. Thank you again for sharing your terrible ordeal with us!
sorry you are going through this. I am in a similar boat. To fix my problem I had to change my diet. Fruits veggies, tea, coffee, wheat rice, any grains are full of built in poisons and those poisons are blocking vitamins and minerals. The poisons are called oxalate and they damage nerves, tissues and organs. Anything other than meat and high far dairy is Full of poisons and damage your health. Plants cause diabetes. Our bodies are not designed for their sugars. Their sugars crystallize in our bodies and start cutting our insides, that cause inflammation and our immune system responds by attacking our tissues trying to solve the problem. You must go carnivore as thet is what we are. If you do not, you will continue to decline and insure more chronic illnesses. Get the book, "Toxic Superfood," by Sally K. Norton which will explain in detail what is happening to you and why. People have been brainwashed that fruits and veggies are healthy, they are far from it. Good luck.
Geez if only I could tell u the negligence I've suffered at hands of doctors. Its ALOT. I'm sorry she had to go thro all this but glad she has found alittle life for herself ❤
Well done for speaking up and well done slater and gorden. Maybe one day I will turn to you
My heart goes out to you, Charlotte. ❣What a story! Thanks for sharing. I've had anaemia owing to B12 and iron deficiencies and understand what that exhaustion is like!
This makes me so angry and I am so sorry this happened to you.
It is all too common. My mum has Pernicious Anaemia and did receive B12 injections until her GP decided she didn’t need them anymore! Until a locum doctor arrived and discovered she had been without them for a couple of years by which time her health was in a very bad way.
I myself then went from being very fit and healthy to having deteriorating health. My mum had been advised by the locum doctor to keep an eye on her kids as this can sometimes run in families. So, I went to the same incompetent GP (the locum dr had left, like all other locums who couldn’t work with him) and asked him if he could check my B12 levels as I had gone from climbing mountains every weekend, running, cycling, kayaking, martial arts training to struggling to walk up the stairs at home. I was completely exhausted and desperate for help. I was 21 years old.
He laughed at me and told me I was too young to have absorption problems and refused to order a blood test.
I went back a few weeks later and told him I wasn’t leaving his office until he ordered a blood test, which he did. I phoned up a week later and was told my levels were normal.
Around 3 years later - with my health continuing to decline, a new locum dr arrived so I went to see him. I asked him if it was worth checking my B12 again and gave him the history. He looked back at my blood result and told me the result was NOT normal - it was low.
Long story short I was put on injections - 6 loading doses over 2 weeks, after which I felt so much better, then onto the maintenance dose of one jag every 3 months.
But after w while my health deteriorated again, and like you Charlotte, felt I needed one every month rather than every 3 months.
Got referred to a lovely consultant who wrote to my GP and asked him to give me monthly injections, which he did for a while but then stopped them altogether, just like he did with my mum!
I changed doctors and get them monthly without any issue and although they help, I think the damage was done and I never fully regained my health. I’m 47 now.
My brother and sister also get B12 injections due to deficiency but as they only get prescribed a jag every 3 months, we now order the vials from a licensed pharmacy in Germany and I give them a monthly injection.
I also give my dad a monthly jab too. Around 6 years ago he started developing symptoms of dementia, but by this point I had done my research and told him to ask his doc to check his B12 which turned out to be low. His GP told him to wait 6 months and get it tested again but I just thought to hell with that and started giving him monthly jabs, and lo and behold, all his dementia symptoms vanished.
Far too many people are suffering needlessly which makes me SO angry as these jabs are so cheap!
The UK also has a very low cut off point at which one would be considered deficient. I believe it is still ~150 pg/mL whereas in Japan, they have the highest cut off point at around 500 (and in many cases around 700) and surprise surprise, they have the lowest cases of dementia per head of population than anywhere else in the world. That can’t be a coincidence.
Ideally you want your levels to be above 1000.
Nowadays B12 deficiency is very common, and particularly in the elderly due to your ability to absorb nutrients diminishing as we age, it makes you wonder how many cases of dementia are actually B12 deficiencies. Something which is very easy and very cheap to treat.
It’s heartbreaking.
A competent Doctor who should
have done a Full Blood Count on Charlotte first time he saw her would have picked up her B12 deficiency.. glad she took legal action❤
My 13 yr old son told me one day that he had been hearing voices for a while and seeing things here or there in his peripheral vision that wasn’t there. It was happening 3 times a week. 3 loud voices all talking over each other. It had already been happening for a month and I made a appointment to a psychiatrist. It would take 2 months to get in! I didn’t actually believe he was becoming schizophrenic because nothing else about him would support that. While waiting for the appointment I researched possible non psychiatric reasons. B vitamins kept coming up so I started him on daily sublingual b complex. Within the next week it was improved. And after that it stopped. The appointment was in a couple weeks and I decided just to keep it just in case. To her credit she was a very thorough doctor and cared but when I told about it stopped and that just happens to be when he started b complex, she looked uninterested and moved right past it. She ended up offering him an antipsychotic and we both turned it down. It has not returned and has been 6-7 months since.
Thank you for sharing your story. It is timely, I see my Dr tomorrow. I understand sleeping 20 hours in a 24 hour period. This will be my 4th summer of sleep. People don't understand pure fatigue, I don't think they can. I've looked at some other info about vit B, not just B12.
I have many specialists and have always tried to stress how debilitating this is. The negative tests and lack of answers gaslights me into doubting what I am feeling. During the autoimmune search (diagnosed as RA/psoriatic arthritis) MS was one of the differentials considered.
No one mentioned a possible vitamin deficiency. Just 'you'll feel better if you lose weight'.
I am going to dive deeper into vitamin deficiency, especially the B vitamins, thank you.
I highly recommend you watch a RUclips video of a nutritionist ELLIOT Nutrition about thyamine. Many people with so many different symptoms having great results taking high doses thyamine. You need to watch the video to understand
sorry you are going through this. I am in a similar boat. To fix my problem I had to change my diet. Fruits veggies, tea, coffee, wheat rice, any grains are full of built in poisons and those poisons are blocking vitamins and minerals. The poisons are called oxalate and they damage nerves, tissues and organs. Anything other than meat and high far dairy is Full of poisons and damage your health. Plants cause diabetes. Our bodies are not designed for their sugars. Their sugars crystallize in our bodies and start cutting our insides, that cause inflammation and our immune system responds by attacking our tissues trying to solve the problem. You must go carnivore as thet is what we are. If you do not, you will continue to decline and insure more chronic illnesses. Get the book, "Toxic Superfood," by Sally K. Norton which will explain in detail what is happening to you and why. People have been brainwashed that fruits and veggies are healthy, they are far from it. Good luck.
Yes.! It's all too easy to be dismissive and discriminating. Drs should never make assumptions about a patient and dismiss their symptoms with a lasse fare attitude. I'm glad to hear you have now got quality of life. Stay strong Charlotte and God bless you dear girl.
2 mins in and i'm so angry with her being told "it's all in your head " happened to me for years as I have anxiety which was on my record and once it's there they literally listen to nothing you say about anything else. Thank God I moved back home to Northern Ireland and my records never tranferred with me from Scotland so it was a clean slate and I get spoken to and treated COMPLETELY differently now. And turns out, yes there was physical stuff wrong with me too.
Same here! Only as soon as my electronic "anxiety and psychosomatic" medical record was shared (without my knowledge and against my wishes) , my new doctors went from treating me with respect to suddenly telling me they refused to do any more tests because that was my problem..tests. ...I was told to read a self help book and when I received my pernicious anemia diagnosis (from a doctor outside their medical system) and started improving with b12 injections, it was put in my file that the B12 was probably a placebo effect!!! And these are university medical center doctors! They also gave me a new diagnosis that said my symptoms (from b12 deficiency) were a special type of anxiety caused by my inability to cope with the normal world. ...tell me, please....what is even normal about this situation?? And I swear, I still don't have anxiety over it. Only outrage.
@KMx108 oh no i'm so sorry to hear that but not surprised. That's medical gaslighting on a whole new level! I have zero faith in doctors. When I was at university the medical students and the law students were as*holes. Superior, entitled and with little god complexes and obviously after qualification many only get much worse.
I was ignored with this for over 2 years. Loss of balance, vision, even hearing. Numbness, shooting pain. Extreme weakness. Severe aches & cognitive loss. It showed up once as anemia then disappeared & my gp mocked me & offered a scrip for anxiety. I ended up with a psych for the cognitive loss. He ran a wide battery of tests and found the B12 & multiple other deficiencies. I’ve been on self-injections ever since. It’s a long recovery. Totally lost faith in docs.
Vegan?
This is the answer Just! Just fixing the symptoms won't work in the long run. sorry you are going through this. I am in a similar boat. To fix my problem I had to change my diet. Fruits veggies, tea, coffee, wheat rice, any grains are full of built in poisons and those poisons are blocking vitamins and minerals. The poisons are called oxalate and they damage nerves, tissues and organs. Anything other than meat and high fat dairy is Full of poisons and damage your health. Plants cause diabetes. Our bodies are not designed for their sugars. Their sugars crystallize in our bodies and start cutting our insides, that cause inflammation and our immune system responds by attacking our tissues trying to solve the problem. You must go carnivore as thet is what we are. If you do not, you will continue to decline and insure more chronic illnesses. Get the book, "Toxic Superfood," by Sally K. Norton which will explain in detail what is happening to you and why. People have been brainwashed that fruits and veggies are healthy, they are far from it. There's another book, " PLANTS ARE TRING TO KILLS US." If you read these books, I guarantee you will understand it all. Get the books because you need to slowly deposit yourself.
I'm an American and live in the USA. In 2000 I was in the mall and suddenly was so weak I had to stop shopping and had to sit down several times to get my breath and energy to walk out to my car. When I got home I noticed my feet were very swollen. Since I had never been so weak before so I went to the ER. Through some blood tests they could see I had very low red cell count. They gave me some blood transfusions and within 3 days I was diagnosed with Pernicious Anemia. It means I can not absorb B-12 through my stomach so it can't be treated with food or B-12 tablets. Since then I have injected myself every 2 weeks with a prescribed amount of B-12 and have my levels checked every 6 months by my doctor.
there are sublingual tablets.
You can get a mouth spray which absorb easily.
Make sure tablets that the Vitamin B12 is of Methlycobolomate form, 40% of people have a gene called MUTHR that prevents the absorbtion of any other kind of B12. RUclips this.
Fixing just the symptoms won't cut it in the long run. sorry you are going through this. I am in a similar boat. To fix my problem I had to change my diet. Fruits veggies, tea, coffee, wheat rice, any grains are full of built in poisons and those poisons are blocking vitamins and minerals. The poisons are called oxalate and they damage nerves, tissues and organs. Anything other than meat and high far dairy is Full of poisons and damage your health. Plants cause diabetes. Our bodies are not designed for their sugars. Their sugars crystallize in our bodies and start cutting our insides, that cause inflammation and our immune system responds by attacking our tissues trying to solve the problem. You must go carnivore as thet is what we are. If you do not, you will continue to decline and insure more chronic illnesses. Get the book, "Toxic Superfood," by Sally K. Norton which will explain in detail what is happening to you and why. People have been brainwashed that fruits and veggies are healthy, they are far from it. Good luck.
This happened to me too!! It's so sad that this happened to her. After 15 years of pain and fatigue, reduced sensation of my left leg, swollen and painful ancles and a whole list of pains and discomfort that I won't bother you all with. I was told I was depressed. I was told I needed to stop taking life so seriously, I was put on antidepressants. Those made everything 100x worse. Now I actually need them because after all that pain I actually do get depressed. I didn't know I wasn't alone.
You are definitely not alone! General Health Physicians are just that. They have a job to do initially and then seek a specialist for whatever is the most predominant signs and symptoms. Not to dismiss someone because of red tape bullshit!
@@rachelheyth3645 Thank you! They make you feel like you're ready for the psych ward. But now, just knowing that I'm not the crazy one, it helps a lot. On one hand I wish I was the only one, because that would nean everyone gets help. On the other hand, not being alone is actually a comfort.
sorry you are going through this. I am in a similar boat. To fix my problem I had to change my diet. Fruits veggies, tea, coffee, wheat rice, any grains are full of built in poisons and those poisons are blocking vitamins and minerals. The poisons are called oxalate and they damage nerves, tissues and organs. Anything other than meat and high far dairy is Full of poisons and damage your health. Plants cause diabetes. Our bodies are not designed for their sugars. Their sugars crystallize in our bodies and start cutting our insides, that cause inflammation and our immune system responds by attacking our tissues trying to solve the problem. You must go carnivore as thet is what we are. If you do not, you will continue to decline and insure more chronic illnesses. Get the book, "Toxic Superfood," by Sally K. Norton which will explain in detail what is happening to you and why. People have been brainwashed that fruits and veggies are healthy, they are far from it. Good luck.
I was diagnosed back in 2010 with both pernicious & megaloblastic anemia which has caused damage my nervous system, bones and internal organs. Each period between my treatments gets shorter and shorter every single time. So I can really relate to Charlotte's story. Thanks for sharing. Paul.
I was finally diagnosed with B12 deficiency in 2005 after years of suffering and getting the injections was a breath of fresh air. Initially I started on the 3 month programme but like Charlotte mentioned I found it difficult to cope with such a long gap in between each injection. My GP allowed me to have injections every 10 weeks which was a slight improvement. After moving to a new GP I was able to get the injections every 8 weeks, but still struggled but was told that 8 weeks was all they could offer me. Interestingly back in the 1960’s the NHS used to administer B12 injections every 4 weeks, by the 1990’s it got pushed to 12 weeks, there is no medical evidence that having the injections more often is harmful. I now live in Florida, where I can now self administer the B12 injections every week, although I have chosen to go with every 2 weeks. My life is so much better and I don’t have the huge ups and downs, tiredness and deep depression I used to get with the NHS injections. I was saddened to hear your story Charlotte and very angry that your symptoms were not fully investigated and missed - I am pleased that you got the compensation you deserved and wish you all the very best for the future
Fix the root cause not just the symptoms. sorry you are going through this. I am in a similar boat. To fix my problem I had to change my diet. Fruits veggies, tea, coffee, wheat rice, any grains are full of built in poisons and those poisons are blocking vitamins and minerals. The poisons are called oxalate and they damage nerves, tissues and organs. Anything other than meat and high far dairy is Full of poisons and damage your health. Plants cause diabetes. Our bodies are not designed for their sugars. Their sugars crystallize in our bodies and start cutting our insides, that cause inflammation and our immune system responds by attacking our tissues trying to solve the problem. You must go carnivore as thet is what we are. If you do not, you will continue to decline and insure more chronic illnesses. Get the book, "Toxic Superfood," by Sally K. Norton which will explain in detail what is happening to you and why. People have been brainwashed that fruits and veggies are healthy, they are far from it. Good luck.
The same thing happened to me. I was a nurse and spent 6 weeks in the hospital getting tested. They told me that nothing was wrong. I insisted on seeing a psychiatrist because I felt like they thought I was just crazy. After 6 months of numbness, loss of bladder control and mental haziness I finally found a doctor who listened. By that time I couldn’t walk or even stand up on my own. I would fall out of chairs and off the commode. I was 38 at the time and I had a 4 year old. They told me I would never walk again or maybe not even sit up. I said, No! I will walk again. After months of being in bed and taking large doses of B12 injections I began to get feeling back in my feet. It was very painful! I cried because my feet burned like hot coals were on them. They gave me some pain pills and eventually I was able to stand up with help and a walker. I practiced as much as possible. I prayed a lot too. Today I am 72 years old and drive my car with hand controls. I have to rest a lot but I do my own housework and laundry. I can’t do most things that I used to do but I do everything that I can to stay strong. Nerves can regenerate! Don’t let them tell you different. I take B 12 monthly and get tested regularly. My mental clarity is fine. I do have balance issues and still can’t stand up with my eyes closed.
I tried to sue the Drs who let me become disabled and feel crazy. I was not able to sue because the Drs in the US won’t testify against each other. I am glad that you got compensated for your disability and I am praying that you will continue to improve.
Did the nerve pain go away too?
Drs don't always know best. Sorry about your battle and frustration. You were determined to get to the root of your issues and pass this on to others. All the best for the
future And good health ❤
I had a mini stroke about a year and 1/2 ago. While in the hospital, it was discovered I had a b12 deficiency. I started getting shots. OMG! For the last few years I had been having confusion, short term memory issues, irritability that is not normal for me, crying at the drop of a hat, and in general feeling very unwell. I honestly was afraid I might be developing early dementia. After regaining my b12 levels, however, All of that is gone!
Did you get the covid 💉? You may want to look into possible side effects from the shot. 😔
This happened to me. I wasn't able to walk for a two months. Doctors were no help at all. I got help through a facebook group on B-12 deficiency. I treated myself and now a few months later have made a full recovery. Have to give myself self-injections every other day. Thanks for sharing your story. Honestly, even well respected doctors of neurology have zero experience in B-12 deficiency to the point that it is scary.
I’m 8 years in. I’m at the end of my rope
What about dissolving lozenges too? Along with a injections?
I blamed my toe tingling on being a smoker for so long. I believed i wouldn't be walking soon. Thank you for this video!! I was told i was deficient in the psyche ward, where i went because my heart kept stopping when i laid down, panic attacks, etc. I was rushed to the er in an ambulance for a potassium deficiency (cost me thousands). The doctors put me on antidepressants and refused to give me the b12 after the first shot. After fighting for monthly shots, that never lasted the month, for a couple years, i now order it from Israel in powder form, mix it with a solution and inject it myself. It's sad that I've had to resort to this. I dropped gluten and have seen amazing results, but I'm still injecting the b12 myself as well. I thought this was just an American problem honestly, poisoning our food. 2 pages of symptoms disappeared and i felt ten years younger getting rid of the gluten on a celiac level.
How can I inject myself with B-12? I’m in California . I would love to be able to do it myself for the convenience even if my visits were covered at the doctor’s office .
@@SleeplessinOCI inject b12 daily. It has to be a needle that’s 40mm so it wil go into your muscle.
You must fix the root cause. sorry you are going through this. I am in a similar boat. To fix my problem I had to change my diet. Fruits veggies, tea, coffee, wheat rice, any grains are full of built in poisons and those poisons are blocking vitamins and minerals. The poisons are called oxalate and they damage nerves, tissues and organs. Anything other than meat and high far dairy is Full of poisons and damage your health. Plants cause diabetes. Our bodies are not designed for their sugars. Their sugars crystallize in our bodies and start cutting our insides, that cause inflammation and our immune system responds by attacking our tissues trying to solve the problem. You must go carnivore as thet is what we are. If you do not, you will continue to decline and insure more chronic illnesses. Get the book, "Toxic Superfood," by Sally K. Norton which will explain in detail what is happening to you and why. People have been brainwashed that fruits and veggies are healthy, they are far from it. Good luck.
In Israel do you buy the methylated version?
I saw their site and there is a lot of useful information on B12 and its deficiency
I was diagnosed after one blood test. My GP put me on a week of injections as a loading dose, and I now have one every two months. Symptoms were similar but not as extreme as in the video. I should have gone to the surgery when symptoms first showed but lived with it for over a year. Eventually, the itching, the sore mouth, the numbness, the brain fog, the eye sight issues, and the tiredness made me seek help. Now thankfulky it's now under control.
sorry you are going through this. I am in a similar boat. To fix my problem I had to change my diet. Fruits veggies, tea, coffee, wheat rice, any grains are full of built in poisons and those poisons are blocking vitamins and minerals. The poisons are called oxalate and they damage nerves, tissues and organs. Anything other than meat and high far dairy is Full of poisons and damage your health. Plants cause diabetes. Our bodies are not designed for their sugars. Their sugars crystallize in our bodies and start cutting our insides, that cause inflammation and our immune system responds by attacking our tissues trying to solve the problem. You must go carnivore as thet is what we are. If you do not, you will continue to decline and insure more chronic illnesses. Get the book, "Toxic Superfood," by Sally K. Norton which will explain in detail what is happening to you and why. People have been brainwashed that fruits and veggies are healthy, they are far from it. Good luck.
Hi Charlotte. I'm so sorry you had to go through this. I found this video because I recently learned about the effects of B12 deficiency. I have symptoms of B12 deficiency, but they've been attributed to other issues. For example, my lower legs and ankles get swollen and burn. I do have varicose veins, but something tells me that the burning sensations is something else. My labs have showed a low red blood cell count and low iron. I also feel tired all the time. I have for a very long time. I just sent a note to my doc to ask about this. Thank you for sharing your story. By the way, I draw as well, so I was intrigued by what you were doing. I hope you find it to be as relaxing and therapeuitic as I do. I 'm taking an online year-long course called Draw Awesome, which truly is AWESOME. I wish you all the best!
Absolutely correct in suing the doctor . It’s absolutely disgusting this poor young woman became disabled because of the negligence in her GP incompetence
I am so sorry for this girl. A couple of years ago I went to a female health doctor with a problem, they did full bloodwork, my B12 was slightly low and I got injections then and there, was made to return several times for them, and instructed to take supplements on top of that. I was experiencing very bad fatigue back then but didn't think it was related or that it could be serious. I should thank my doctor for acting quickly.
This doesn't necessarily have to be permanent. It sounds to me like she's being massively under treated STILL! Daily B12 injections along with 5mg folate, a good B complex with no more than 10 mg of B6(P5P version) ,a solid ferritin level of 80ng (optimal) and daily intake of loads of potassium foods(upwards of 4000 mg) and she would likely be recovered in a year or so. You need LOADS of B12 injections.. Not just one a month or one every few months like the doctors will say. DAILY. My mother and I are both living proof but there are thousands and thousands of others who have caught on to daily injections. It makes me so sad to see stories like this.
Consider checking your vitamin D level. Vitamin D is necessary for the body to utilize B vitamins. It should be standard to check vitamin D in all person, ESPECIALLY FEMALES.
Vitamin D will not replace vitamin B therapy but it will help the body utilize the B vitamin. It is also very important to understand that nerves heal at an extremely slow rate. It can take anywhere from 6 months to 2+ years to heal.
It could be a long term effect considering she wasn’t treated properly in time before the damages started.
@@YaYaPaBla In her can you are probably right, sadly. While it is true that nerves take a long time to recover, it is also true that untreated nerve damage can and does become permanent. In my case I hope that recover is still possible as I was not diagnosed by my doctors. I took the initiative to do my own research which is what I am sharing here. I am 70 yrs old and have experience serious pins & needles and numbing on the bottoms of my feet along with some other neurological symptoms. Learning what health issues vitamins are responsible and applying them to yourself is very important. Thank you for your comment.
Can I ask you how did you increase you ferritin levels? I took iron for a year it went up but the ferritin not so much. Vitamin d too took it for a year but its level isn't really that great either. 😣
@@annalisamoreno7745 your calcium ever high? I couldn’t get my vit d up because I was hyperparathyroid. Also, on the iron, take a double dose every other day. There was a study that showed it improves absorption. Take it with some orange juice and not within 2 hours of dairy, tea or coffee. Take desiccated liver, the vitamin A helps with iron absorption also, not to mention it has some iron and other important nutrients.
Been having issues for three years. Told it was anxiety and depression. The more I insisted it isn't that two different doctors became really aggressive about its just all in my head and told me off. Third doctor wants to send me to a neurologist and a cardiologist. But in the meantime I've learned about functional medicine and refuse. Finally found a dietician with an understanding of functional medicine and when she sent a lab request to check my mineral and nutrients the receptionist at the my doctors office hollered at me and said why what's wrong you. I felt so awful that day I burst into tears. And this is in reception in front of a room full of people. I had to plead with her to get her to present the lab request to my doctor. Mind you the RD I'm seeing has a resume longer than the PA I'm trying to get to order these labs. The RD worked on the heart and kidney transplant team at a world known hospital! And this reception is going to question me about this. Anyhow FOUR days later the receptionist called and said that the PA had agreed to order it but not to expect my insurance to cover it because she had no diagnosis to give it. That's how it works you have to diagnosis someone in order to run test on them??? Sounds a bit backwards to me! But I go in Friday for the lab and I feel like I'm on the right track but this has been the most demoralizing thing I've ever experienced. But I'm having the same issues with numbness and my eyesight that this young lady is talking about and at one point my doctor says maybe you need a massage or to go sit in a sauna???? I'm going numb and having extreme eye issues and that's what you suggest??? I feel so angry. I just hope that I can walk in to that office in a few months and say see I'm fine NO THANKS TO YOU!
Anytime any medical provider anywhere refuses to provide care that you are requesting, whether it's a test or a scan or an xray/MRI or a referral-- demand that they NOTE IN YOUR MEDICAL RECORDS WHAT YOU REQUESTED AND THAT THEY REFUSED TO PROVIDE IT. This is your legal right in both the U.S. and the UK, can't speak to other countries. Surprisingly you will often find that being forced to put their behavior in writing (and thereby opening them up to liability should your case later find that their refusal resulted in negligence or malpractice) they will cave and give you what you want. They will be sullen and possibly retaliatory but you will get the test(s) you need. Then once you've got your Dx you can find a new practitioner who will take care of your situation properly.
@@catstreat9434 a very good point, thank you.
@@catstreat9434 thank you for that information. Makes good sense. Thanks!
Thank you🙏🌷
Just fixing the symptoms won't work in the long run. sorry you are going through this. I am in a similar boat. To fix my problem I had to change my diet. Fruits veggies, tea, coffee, wheat rice, any grains are full of built in poisons and those poisons are blocking vitamins and minerals. The poisons are called oxalate and they damage nerves, tissues and organs. Anything other than meat and high far dairy is Full of poisons and damage your health. Plants cause diabetes. Our bodies are not designed for their sugars. Their sugars crystallize in our bodies and start cutting our insides, that cause inflammation and our immune system responds by attacking our tissues trying to solve the problem. You must go carnivore as thet is what we are. If you do not, you will continue to decline and insure more chronic illnesses. Get the book, "Toxic Superfood," by Sally K. Norton which will explain in detail what is happening to you and why. People have been brainwashed that fruits and veggies are healthy, they are far from it. There's another book, " PLANTS ARE TRING TO KILLS US." If you read these books, I guarantee you will understand it all.
Thank you so much for sharing your story. I've had a similar experience with doctors telling me nothing was wrong for years, one said I'd probably need to be on antidepressants for the rest of my life. Nope. Once I discovered by myself what my condition was After months of research, I discovered I have a digestive disorder that affects every part of my existence, I took the matter into my own hands and I'm learning how to cure myself. I took myself off anti to presence months ago. I have an appointment with a naturopath (finally) in a couple of weeks who specializes in digestion. I will never trust mds again.
What was your digestive order?
this is sad, im sorry this happened to you but glad you have a life you are happy to live and you are very good artist, God bless!
I had a migraine in March afterwards I was sleeping 14 or more hours and waking more exhausted than before I slept. My neurologist requested my GP order a full blood work up. Saw my GP end of July. She said my B12 was on the low end of normal and to take 1000 mcg of B12 daily. In 2 short weeks I'm waking up after 7-8 hours and walk up alert. I've been treating for stomach issues which can be a leading cause of malabsorption of B12. A small fix for a huge problem.
God……I’m sitting here in near tears.
More than 20yr area I’ve begged doctors to try and figure out what is wrong with me.
Ears ringing, eyes bad, thyroid out of whack, depression, anxiety, joints hurt, muscles burn, high blood pressure etc etc etc.
a gastro doctor has given me every test in every oriface of my body. Thousands of dollars in copays. I’ve been anemic all of my life.
I woke up 5mo ago and my left leg was numb and I had the worst sciatic pain. All the doctors said I was imagining it. Tests are all normal. My 11yr old has cancer and they said it was because I had a lot of stress. The pain doctors all said my back was causing the leg numbness.
I got my first b-12 test yesterday and doc said it was the lowest he’s ever seen. 😐
I woke up at 4am and feel like a different person……I think this is how I’m supposed to feel? I’ve felt like I was dying for so long. At one point I even videos for my kids in Case I died in my sleep. I’m shook at how much better I feel after one small shot. I’m so angry.
My 14yr old has complained of fatigue…she’s been told she has vitaligo and other skin type issues. At her last well check they said she had small red blood cells (just like I’ve always been told) but docs just smiled and said it wasn’t a big deal, she’s young. Gasp! No. No sir. If this is so simple as a vitamin issue I’m going to fix it early and not let her suffer like I did. My god.
How are you feeling. I’ve 8 years of this. I’m at the end of my rope. How long til you were healed?
Why can’t we have more control over our health?? This is monstrous.
*** Thanks for sharing your story.. You are such a beautiful light in this world and many many people will benefit from learning about this.. I find the same when trying to get doctors to listen and hear what I am explaining. I'm sorry this happened to you.. I'm happy you have your independence now. Sunny days ahead.. thank you again for sharing your story.
I once had an illness so scary, my hands were weak and achy, my feet were tripping on stairs for weeks and weeks. I had an MRI ruled out MS and Parkinson’s....I went back to my first bloodwork and noticed a BARELY within range potassium (.02 within range) immediately walked in my kitchen and took 3 drops potassium iodide, an iodine supplement really, and I was FINE WITHIN THE HOUR.
Always double check your doctor’s work!
PS some years later I was reading a blog that mentioned: careful eating too much licorice, it depletes potassium, ...so it’s true, I had quite a licorice addiction at the time!
Pernicious anemia. It is appalling that doctors don’t look into a physical cause. My MIL had it, got a shot once a month, of B12. And there is a sublingual tablet, which is absorbed under the tongue, going into blood stream. So disgraceful that this happened to this young woman. It is easy to fix, once diagnosed.
I gave up with GP misinformation and now self inject b12. No one I encountered who had been UK trained knew how to treat or b12 deficiency or pernicious anaemia.
That seems to be the only way forward.
Where can person in UK get b12 for self injection? Thanks
@@alienglish77 thank you
I’m a misdiagnosed person too and I wish we could sue our doctors here in the US. It happens a lot here.
Especially if you are female, any symptoms they can't diagnose properly are always emotional and "in your head", case closed. Yet men's complaints are taken seriously and investigated at length. Infuriating.
You CAN sue doctors in America, what makes you think you can’t? They carry boatloads of malpractice insurance.
@@judipierry549 I should have written it different. It’s hard to sue them and win. They are so protected. I got Trigeminal neuralgia from an injection site injury that became an infection and traveled to my brain and the dentist was fully protected. I called 3 lawyers. It’s so hard to sue. I hired an attorney because it took a year and half with infection in my brain to finally get the surgery after almost dying with two little kids at home. I’m a single mom. It was hell. It’s not easy to sue doctors or dentists. I tried to Sue the medi-cal doctors too. The attorney said take the surgery. That’s the least I can get you. I’m in California. It’s not an easy process and there’s so much more that I could write but I would need to write a book on it. It’s a lot.
@@CharGC123 As a man, who is housebound due to neurological symptoms, no doctor has ever taken me seriosuly and I'll ive heard is that it's in my head. I disagree with your statement. Women tend to go to the doctors more often and so if 5% of patients a doctor sees get's told that it's all in their head, overall more women will be told it's in their head just because they go to the doctors more often. It's not a womens vs mens thing. I'm crippled, and I'm a man.
@@arnoheens7900sure, but how many times have your symptoms been blamed on some masculine version of perimenopause? 😂 I feel you, friend. It's all is wrong and shouldn't happen to anyone.
With ego's the size of continants, and a limited knowledge, they would rather people just go away and find out for themselves somehow, or just suffer. Most are tapping into google searches while you're trying to talk to them. When they are past caring, they need to leave.
Thank you for bringing awareness! The struggle is real!!
Praying for your total healing!
I'm going through this now, I was on b12 injections, the nurse has taken me off it, for over a year I have had shortness of breath , no energy, fingernails on left hand very dark brown, do not feel well, they keep saying, there is something else going on, mental Health. I can get sudden pains in chest, but they keep saying my blood results are normal . And ignore what I am saying, I have no quality of life.
B12 deficiency runs in my family. My aunt had it so bad that she collapsed from the weakened nerves and it was discovered while she was in the hospital. I've heard it's connected to German heritage, but at the very least there can be a genetic component since so many on my dad's side have it.
My chronic low B12 and very low iron was caught but they couldn't figure out why. Went for a routine colonoscopy (everyone in Canada gets one once you turn 50) and the gastrologist right away saw my numbers and booked a return visit for me to get an endoscopy. Ends up I had developed celiacs disease so wasn't absorbing vitamins. I am above normal weight, good teeth, and no stomach issues when I eat anything, even wheat. Ends up those underweight people with bad teeth and bad stomachs developed the disease as kids and went undiagnosed hence the calcium issues causing bad teeth etc. Ends up people are born with a celiac gene and you can develop it at any age, not just as a kid. Adult onset often means no stomach issues or weight loss etc, only sign is various vitamin deficiencies start showing up. Low b12 is usually due to a lack of absorption, not lack in the diet as most foods (esp cereals) are fortified. I got b12 shots for awhile, iron pills (I was so low I almost needed a transfusion) and changed my diet to gluten free and have been fine since.
My daughter has also recently been diagnosed with B12 deficiency and is having two monthly injections, was supposed to be three monthly but symptoms seem to start again after eight weeks. She was constantly tired, really really tired and would cry because of it and how unwell she felt. She saw our ‘good doctor’ - there’s four at our practice, and he suggested bloods to look at her B12. She had no appetite, still hasn’t got that back, and awful tremors - which she still has. She also has some peripheral vision damage that will probably never get better. As her mum I feel bad that I’d never noticed how bad her shakes were but thought I have shakes and so does her older sister, figured it was a family thing but hers are so much worse. She’s 32 and lives with me so I should’ve offered her more support. Around three years ago a blood test showed her B12 was borderline and follow up required but it was never followed up. We are all busy working and dealing with other family things that we don’t pay attention when we should eh? We’re in the UK too and I’m glad you got a diagnosis eventually but of course it should have happened much much sooner. Take care. x
How she now?
You are not the first and you won’t be the last. Back in 1970, my father, also living in Sussex, had a total gastrectomy for stomach cancer and he displayed some of your symptoms. So, as an SRN nurse (from the old pre degree brigade) I questioned as to whether he was getting the essential vit B injections. EVERY doctor or nurse who paid attention to their studies would know about the stomach’s intrinsic factor of Castle. That is the essential gastric gland required to absorb the vitamin. I suggest you were low in gastric secretions. I am so sorry you had to suffer from basic incompetence. By the way my dad lived 20 years post surgery with the correct care.
@wendy ~ this makes total sense!
That’s what Drs. say when they don’t know what’s wrong! It’s anxiety, depression and in ur head. Usually wrong. Drs. Don’t usually think about vits , mineral, enzyme suppliments!
AMA needs to get with it and include couple years of schooling on what the body is made of and how to keep it healthy.
At least it would be another option to include when diagnosing.
I’m really glad you finally figured out what was wrong. I too suffer from B-12 deficiency, I’m curious what you numbers where, mine is at 250 and I’m taking monthly injections. I just did the second one and I feel a lot better. Thank you for sharing
Just fixing the symptoms won't work in the long run. sorry you are going through this. I am in a similar boat. To fix my problem I had to change my diet. Fruits veggies, tea, coffee, wheat rice, any grains are full of built in poisons and those poisons are blocking vitamins and minerals. The poisons are called oxalate and they damage nerves, tissues and organs. Anything other than meat and high fat dairy is Full of poisons and damage your health. Plants cause diabetes. Our bodies are not designed for their sugars. Their sugars crystallize in our bodies and start cutting our insides, that cause inflammation and our immune system responds by attacking our tissues trying to solve the problem. You must go carnivore as thet is what we are. If you do not, you will continue to decline and insure more chronic illnesses. Get the book, "Toxic Superfood," by Sally K. Norton which will explain in detail what is happening to you and why. People have been brainwashed that fruits and veggies are healthy, they are far from it. There's another book, " PLANTS ARE TRING TO KILLS US." If you read these books, I guarantee you will understand it all. Get the books because you need to slowly deposit yourself.
Suggest you also check gluten allergies that would/could cause vitamin absorption problems, weight gain, bloating, numbness and aching in lower body from waist down, swelling painful ankles, oedema and numerous others. Please don't give up, many reports of nerves healing-they grow back towards each other but takes time. Keep up testing and do check for gluten/Celiac which can exacerbate your problems and cause terth problems too. Wish you good health
Thank you so much for sharing your story Charlotte 🙏🙏🙏 I've been having similar problems for years, l can't take long walks like l used to, now l can walk for a few minutes and have to stop, the pain and weakness in my legs is getting wirse, and l am sooooo tired, l could sleep for days, and only get up to go to work but can barely function. I wonder if I'm B12 deficient. Amazing hiw your story would come up in my feed just when l needed it. I really thought l was going through a serious depression because of the need for so much sleep but listening to you, made me realize that the pain and weakness in the legs could be a B12 deficiency. Here in Canada they don't just test for B12 randomly. Thank you sooooo much. I am so sorry that this terrible tragedy happened to you when it could have been prevented 😢😢😢 l hope you do get compensation to help you out. Thoughts and prayers are with you 🙏 🙏🙏
Just fixing the symptoms won't work in the long run. sorry you are going through this. I am in a similar boat. To fix my problem I had to change my diet. Fruits veggies, tea, coffee, wheat rice, any grains are full of built in poisons and those poisons are blocking vitamins and minerals. The poisons are called oxalate and they damage nerves, tissues and organs. Anything other than meat and high fat dairy is Full of poisons and damage your health. Plants cause diabetes. Our bodies are not designed for their sugars. Their sugars crystallize in our bodies and start cutting our insides, that cause inflammation and our immune system responds by attacking our tissues trying to solve the problem. You must go carnivore as thet is what we are. If you do not, you will continue to decline and insure more chronic illnesses. Get the book, "Toxic Superfood," by Sally K. Norton which will explain in detail what is happening to you and why. People have been brainwashed that fruits and veggies are healthy, they are far from it. There's another book, " PLANTS ARE TRING TO KILLS US." If you read these books, I guarantee you will understand it all. Get the books because you need to slowly deposit yourself.
I have suffered from Pernicious Anemia since I was 27 years old. I take b12 injections monthly and will need to for all my life. I am now 71 years old. Thanks goodness mine was caught before nerve damage. My hemoglobin was down to 3 and b12 level quite low.
I’m so sorry you had these negligent doctors. I’m glad you sued them.
I almost died from B12 deficiency and how poorly managed it was. I have been in a constant fight with the GPs and have been self-treating for 4 years now. My case is one of absolute medical negligence and every doctor who failed to acknowledge and refuse to help me should lose their license.
It is such a common thing these days that physicians are unable to properly diagnose and treat B12 deficiency. I had it myself and ended up researching my symptoms and treating myself with IM injections. I was realllllyy sick when I started. I am still injecting myself once a week to stay above water. Wishing you all the best ❤
Could you please tell me your symptoms and where your getting the shots and supplies. I think my daughter has this
@@scarlettwinters5642 my symptoms were severe nightsweats, tingly and hot feet, brain fog and pale skin. I am getting my B12 via a German pharmceutical company (Vitamin B12 Depot Hevert)
@@missnerd4832 I have all those symptoms and many others
@@missnerd4832 how of do you give yourself the shots?
How long did it take to see relief and how long have you been doing it?
Not related to B12 deficiency but for three years I had ongoing server pain, and after going to my GP multiple times he put me on antidepressants and said I had severe anxiety. I asked how anxiety could mimic strong pain where I’d literally be on the floor squirming, he said anxiety can manifest into physical pain for some patients.
After a further six months of going to the hospital (by ambulance) here in Australia you can cite “Ryan’s Rule”. They had to look into my symptoms before discharging me and could not send me home. Turns out I had 18 small gallstones and they had been travelling into my bile duct (from memory - the Dr explained that’s why I was in so much pain) they removed my gall bladder. I when back to my GP and told him he’d medicated me for over a year for a condition I did not have. He said nothing - no sorry nothing. I changed GPs and made sure to let my new GP know the story and how I would like for him to - take me seriously no matter what “he” believed - investigate, be the scientist you set out to be in your youth I said - please never ignore me like I had been ignored for years.
My GP told me it was not her job to manage my care. At my next appointment I recorded it on a medical app (legal to do here) because I wanted to have proof of what she said if she said it again. I had discovered I had a low folate level (I ordered the test on my own) and wanted her help managing and monitoring that. She refused and recommended I see a psychiatrist instead. I exclaimed, "but this is a medical condition!!" She then said the appointment was over and she would not tolerate my behavior. I asked to see the office manager. She took me to the office manager and said I had yelled at her. I said, "really? Because I have a recording we can listen to if that's the claim you want to make." The next day, she formally kicked me out of the entire office, despite my being in the middle of a health crisis, which is not allowed per the state medical board. She was so convinced I was fine and "just" mentally ill that she couldn't even do her job when it was handed to her on a silver platter. I am still recovering but when I am stronger, I am going to go above and beyond to make sure she doesn't do that to anyone else.
She'll do you a favor?!??!?! As if it's not her freaking JOB to order tests for you! What a neglectful .....!
Edit: This is so disgustingly common in the states, at least in my experience. I had to beg my doctor at one appointment to get include a test for Vitamin D. I was low on energy and now that I've started to take all the B Vitamins and feeling better, I should've asked for a blood test for my B vitamin readings.
Sorry this happened to you but so glad you were compensated. Too many doctors are negligent and quick to wave their patients off as their complaints being 'all in their head.' It's absolutely unconscionable!
Wow. Just recently I was diagnosed with a B12 deficiency too, but my family doctor fortunately started the treatment immediately! For the next few weeks I'll get a B12 injection every week.
You are fortunate enough to live in a country where ''I believe'' you can buy it over the counter in a chemist/pharmacy. Other countries do not have that access.
Ya I too have started b12 injections had my 4th one this wk.. But I I would have a very bad diet I wouldn’t eat very well..I never knew this could happen!
Just a heads up. When I was diagnosed I was told they had to check why. Starting with my stomach. I was diagnosed coeliac.
How are you doing now?
@@dsparks5308
Thank you, I'm well. The treatment was successful.
Our medical system is useless in my opinion
I went to doctors for years trying to figure why i was so exhausted all the time. I was dealing with chronic pain and low mood, too. Doctors always told me to lose weight. I tried, nothing i did allowed me to lose weight or give me any energy. A nurse practitioner did a full panel blood test, saw my B12 was the lowest she had seen, in the low 200s, and my vitamin D3 was low. Its been a year since she started weekly B12 shots and gave me a script for the vitamin D. Its like I'm a whole new person. No chronic pain, and I can go all day without needing a 3 hour nap. I sleep normally and wake up refreshed now.
Fix the root cause. sorry you are going through this. I am in a similar boat. To fix my problem I had to change my diet. Fruits veggies, tea, coffee, wheat rice, any grains are full of built in poisons and those poisons are blocking vitamins and minerals. The poisons are called oxalate and they damage nerves, tissues and organs. Anything other than meat and high far dairy is Full of poisons and damage your health. Plants cause diabetes. Our bodies are not designed for their sugars. Their sugars crystallize in our bodies and start cutting our insides, that cause inflammation and our immune system responds by attacking our tissues trying to solve the problem. You must go carnivore as thet is what we are. If you do not, you will continue to decline and insure more chronic illnesses. Get the book, "Toxic Superfood," by Sally K. Norton which will explain in detail what is happening to you and why. People have been brainwashed that fruits and veggies are healthy, they are far from it. Good luck.
i am sorry to learn about what had happened to this young lady. I have had serious B12 deficiency for decades through becoming vegetarian circa 1987 and not having meat and fish for almost 20 years. i would appreciate hearing from you if you think you can help me in any way. I have already established a history of historic NHs medical negligence which i did not prosecute as i was so ill for so long after an adverse reaction to polio vaccine and then all my NHS medical records disappeared and there is no trace of me before 2007
Just fixing the symptoms won't work in the long run. sorry you are going through this. I am in a similar boat. To fix my problem I had to change my diet. Fruits veggies, tea, coffee, wheat rice, any grains are full of built in poisons and those poisons are blocking vitamins and minerals. The poisons are called oxalate and they damage nerves, tissues and organs. Anything other than meat and high fat dairy is Full of poisons and damage your health. Plants cause diabetes. Our bodies are not designed for their sugars. Their sugars crystallize in our bodies and start cutting our insides, that cause inflammation and our immune system responds by attacking our tissues trying to solve the problem. You must go carnivore as thet is what we are. If you do not, you will continue to decline and insure more chronic illnesses. Get the book, "Toxic Superfood," by Sally K. Norton which will explain in detail what is happening to you and why. People have been brainwashed that fruits and veggies are healthy, they are far from it. There's another book, " PLANTS ARE TRING TO KILLS US." If you read these books, I guarantee you will understand it all. Get the books because you need to slowly deposit yourself.
Thank you for sharing your story… I’ve been gas lit by doctors for the last 15 years (had some lovely doctors) but they don’t stick around… last time I went to the neurologist he said “sorry your just not wired up right” 🙄… it’s been a nightmare journey and still no answers!! I’m definitely going to up my b12 intake as I paid for a private test that said I needed it… I wish doctors cared more 😞 p.s I love your artwork!!!
Thankyou so much for doing this my sister has had to fight to get the injections (blamed her depression) we know she needs them more regularly than 3 months they are saying it's all inher head x
She should consider self injecting, I know how uneducated GPs are about this deficiency.
Yr sister wont get well on the NHS starvation diet of b12 shots
The only way is to buy your own b12, and self inject
Crucial to take all cofactors
@@fireyflower6643 Thankyou we are looking into this x
you can also get sublingual b12 tablets as i do. not everyone needs to struggle with injections. doctors are so cruelly stupid about so many illnesses when they say it’s in a person’s head.
@@jenniferchapman9645You can also get patches and sprays.
I'm so glad that in Australia a simple blood test is usually done as a first step when complaining about any issues to a doctor.
God bless you hun, I am going through this right now. No VitvD or B12 I am 56 yr old. The only doctor that listened to me is my gynecologist she listened and she look at my labs from 2 months ago. She put me on 15000 IUD D3 and Vit K2 also the B12 shot every 21 days. I’am learning theres different forms of B12 injections I am praying I get results from the form I am on. I have had neuropathy for years in my right leg in my toes, and it started spreading to my left leg foot. praise the Lord my savior, I’m not diabetic they always summed the neuropathy to be coming from my lower back, which I do have some bulging disc in, but I’m beginning to believe that this problem is been going on longer for than I know of. Sad to find out that they don’t usually check your vitamin levels and most doctors don’t even believe in supplements. God bless you God be with you and you’re absolutely beautiful. Thank you for sharing.
I have been in the same boat. I think it should be mandatory and standard protocol for patients to have blood work drawn before ever being prescribed any psychopharmacological drugs. Doctors should learn to CARE and actually look for the true etiology of a chief complaint instead of just throwing pills at patients and hoping they “feel better”.
Thankyou Charlotte for giving us your story 💗I think I may need to get in touch with my doctor and hope maybe I can get somewhere ...
All the best with that. I have learnt over the years a very important thing. "Them what shouts the loudest gets."
I had a double fail, undiagnosed celiac disease caused vitamin B12 deficiency which took an eternity to be diagnosed. Now I have the memory span of a goldfish and suffer from life changing anxiety.
Our health is are wealth. Always get a second and third medical opinion from another clinic. My wife had an athletic figure and in good fitness but was diagnosed with menopause & low mood disorder. Also, she was harassed for taking too much time off at work. She collapsed from a stroke and was told she had about three months left to live because of a cancer growing fast on her brain. Please don`t put your health on the back seat to pacify others stubborn opinions.
Peace be with you all!
Four years of being told it was depression. B12 test had been taken but no-one had followed up on it until I saw a different GP who looked back over my records and realised how low it actually was...I though I was going crazy...I was given IM injections every week for 4 weeks and now I do the 12wkly ones myself. I have problems with my grip and balance...drop things constantly if I just try to pick things😮 up with my hands... and one foot is slower so I have to be careful not to trip over. I'm now reg disabled just because this wasn't picked up sooner. I have endometriosis as well that took 9yrs to diagnosis...And I'm a nurse so I know the system and how to question...I wonder how many people are still suffering because of lack of or late diagnosis of pernicious anaemia/B12 deficiency.
Just fixing the symptoms won't work in the long run. sorry you are going through this. I am in a similar boat. To fix my problem I had to change my diet. Fruits veggies, tea, coffee, wheat rice, any grains are full of built in poisons and those poisons are blocking vitamins and minerals. The poisons are called oxalate and they damage nerves, tissues and organs. Anything other than meat and high fat dairy is Full of poisons and damage your health. Plants cause diabetes. Our bodies are not designed for their sugars. Their sugars crystallize in our bodies and start cutting our insides, that cause inflammation and our immune system responds by attacking our tissues trying to solve the problem. You must go carnivore as thet is what we are. If you do not, you will continue to decline and insure more chronic illnesses. Get the book, "Toxic Superfood," by Sally K. Norton which will explain in detail what is happening to you and why. People have been brainwashed that fruits and veggies are healthy, they are far from it. There's another book, " PLANTS ARE TRING TO KILLS US." If you read these books, I guarantee you will understand it all. Get the books because you need to slowly deposit yourself.