Hemochromatosis: My Journey
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- Опубликовано: 10 апр 2018
- Hemochromatosis changed my life. I thought I was failing, falling apart, and not successful. It turns out I was just literally weighed down with iron in my body. Haemochromatosis means that your body absorbs too much iron, and it can cause major organ failure. Plus other health complications. Here's my hemochromatosis story.
Disclaimer: I am not a medical professional, this does not constitute medical advice. Please consult a medical professional.
I am an entrepreneur, REALTOR®, and I like to garden. Join me as I share with you the lessons I've learned, gardening information, and I'll take you along on my entrepreneurial journey too!
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Created by Kyle Clayton Gore
Produced by Better Creative Studios: ruclips.net/channel/UCcSy...
Edited by Kyle Clayton Gore
Music: Memories by Ben Sound, www.bensound.com
Thank you for your story, I just stumbled into it whilst looking for information about hemochromatosis. I was diagnosed with hereditary hemochromatosis a few days ago, found out when I was getting a general blood diagnosis. My ferritin levels aren't as high as yours was, I'm only at ~700 but I'm glad I was diagnosed so I can start the preventive blood-letting and get it under control. I wish you all the best. take care.
Thank you for watching and your comment. I’m so glad you found out and will start treatment! I hope all goes well, keep me updated!
I was just diagnosed yesterday with similar levels to yourself - waiting for appointment with the specialist to look at the next steps so just on a RUclips binge about it.
Hope all is good with you 😀
Congratulations dude. You're an inspiration. A ferritin of 4000 is hell on earth but you made it through like a CHAMP!
Thank you Ahmed! I appreciate your kind words!
Diagnosed yesterday, really good video ,
I'm so happy your doctors were able to diagnose Hemochromatosis(thanks to your brother) before damage was done to your joints, etc. My father's side carrie's the gene and many have been diagnosed with it. My father became critically crippled from the disease and my uncle passed away from complications from this disease in 1982. Awareness makes a difference and Thank You for that! I'm happy you did this u tube video! Sad to say but a person can't reverse damage that has already been done. Best of Luck to you! #UMakeaDifference!
Wow! Thank you for watching and for your comment! I am so sorry for your loss and heartache this disease has caused your family. That is really hard! Thank you for sharing. Awareness is huge and that is my goal with these videos. I am so glad you found them! Hope you are well and best of luck to you too!
Good for you ❤
Thank you for sharing your story Kyle.
Thank you!
I've just been diagnosed with this. I'm not feeling too worried about it right now. I'm not sure its fully hit me yet though. I never used to struggle to get out of bed. I was always up by 8am. But in the last 12 months its been getting harder and harder. Not only struggling to get out of bed. But not feeling rested when i woke up. Like I hadn't even slept at all. I've been fatigued and lacking in motivation to do things. Its gotten me quite down. I'm just glad I went and had blood tests done to figure out what was going wrong with me. At least I know now and can start having blood taken to get my iron levels back down to a more normal standard. As a result my siblings are going to have to be tested for it. I feel bad about that. But I don't want their health to be in jeopardy either.
That is exactly how I felt during my peak. I used to run 3 businesses and couldn’t get out of bed. Glad you found out what it is! Even happier to hear that your family is getting tested. Hoping you get back to normal soon!
@@KyleClaytonGore I have my follow up doctors appointment on Friday, the first one since being diagnosed last Friday. I'm keen to get onto treatment do that I can get back to feeling more like myself again. My brother was having a look at the symptoms the other night and a lot of them align with him as well, so he's going to get a blood test done as soon as he can. Some of his symptoms are a bit more alarming than what I've experienced, I've only really had the fatigue, but he's been having issues with his heart rate, which is quite worrying to me.
4,000! Wow! I was diagnosed by happenstance so I was lucky not to be that high. I am not in "maintenance" yet but hoping in a few months I will be. I like hearing other's stories. Best wishes!
How inspiring!!! I was to the point of not being able to function and was becoming suicidal because I was in such a brain fog, exhausted, in pain, and I didn't want to live the rest of my life that way! I felt like a bruised vegetable. I'm now 3 1/2 months into phlebotomies at twice per month. I'm already feeling a little better... But feel so hopeful to get even better! Thank you for this video! I think we need more HH awareness.
I’m so glad you found these videos inspiring. I’m so glad you are here and feeling better. Keep up the good work!! There is a huge need for more awareness. Glad we connected.
How are you feeling now. My brain is doing scary things and I'm terrified atm. I am honestly very suicidal bc my brain is just doing weird things. Thank you
Thankyou so much for sharing.. My a kles upto my knees turned very dark in colour. And few other problems too. Very much better since after blood taking 4 times.
thank you for sharing!
how are you feeling now?
Thanks Kyle, my symptoms are constant fatigue, weakness, lack of energy, total exhaustion. It started last July after doing a crazy ketogenic diet. Finally I found out my ferritin is 440 so my hematologist has ordered the genetic test, will find out soon. Thanks.
I felt the same way! Glad you're getting it checked out!
You're a true Iron Man!
True!
My symptoms were strange aches in my joints mainly my knuckles and ankles, fatigue was extreme, I just thought it was the female hormones, & dizzy sometimes thought it was just vertigo. Try & cut down or cut out any vitamin supplements that have, iron, vitamin C & B12.....just my suggestions :)
Very nice video carl,
I have hemochromatosis come up did you ever suffer from shortness of breath and weakness, I've been doing phlebotomies now for several months my numbers are slowly going down I'm down to 600 but what I've been noticing is that any amount of exertion and I'm completely exhausted and I feel weak and sometimes I get shortness of breath, did they ever happen to you?
Thanks for sharing your story! At what age were you diagnosed?
I was 31 years old. It was late 2016. Thank you for watching!
Hello Kyle! I was diagnosed a little over one week ago. My Feritin level was 609 but all my iron panels & liver panels are within normal limits. Have you ever heard of high feritin combined with normal iron & liver panels???
Thank you for your story even my transferrin saturation is high 55% and all other iron status is normal ferritin is 70 but I feel like crap I have a metallic taste in my mouth,brain fog fatigue digestive issues and even a white coating on tongue I think iron overload is my root cause for these issues
I just diagnosed with iron over load today and I have 2 options. Taking this medicine but it too risky or phlebotomist. My Dr recommend phlebotomist once a month. Listening to your story makes me feel stronger.
I am glad to hear you are getting treatment! Thank you for watching and I am glad I could help you feel stronger. You've got this!!
I was just diagnosed what were your numbers? Mine are 550..I'm waiting on genetic testing...
Hi Kyle, I am reading a lot about turmeric and IP6, did you try any. And what type of tea do you consume with meals. Thanks.
Hello!! I've heard about turmeric but not IP6. I just consume black tea before meals, or whatever is available.
Hello Kyle, Thank you for sharing your story and glad to hear you are doing well. I was diagnosed but I am getting all the iron from blood transfusions every other month with my ferritin now 3,000. It keeps going up when I receive 2 pints of blood in transfusion for anemia for MDS. Is there anything I can do ? My doctor said it may be my new normal. Should I find another doctor ? Thanking you in advance.
Oh wow, that is hard to deal with. Stay strong. It’s never a bad idea to get a second opinion with doctors. Having blood transfusions would definitely spike iron levels. All I can think of is drinking tea or doing other things to block as much iron absorption as possible. I’m not a doctor, so don’t take my word. Maybe another opinion will help you.
Hi! Very interesting! I had 5 100 when they discovered it a year ago. I didn´t have any symptoms that I could relate to any sicknesses. They found out at a regular healthcontrol. They take 600 ml each week and I´m down on 1 100 now.
I have always been tired ;-). I my mum always said I´m lazy :-) .
I have had bad arthritis(?) "artros" in swedish, for many years and I now suspect it has to do with my Hemochromatosis. As far I as know it will not get any better, sadly...
But I hope I get a little more energy when I come under 500...
Wow! Glad you are taking care of it and getting your iron levels down. Keep up the good work!! I would say that Hemochromatosis probably did have something to do with your Artros. Hemochromatosis will make you very tired, especially at those levels.
I am hoping you regain some energy as you get lower and lower. I feel like I got some back. Keep in touch, thanks for watching!
Same here Lars. Arthritis and fatigue/lack of motivation. I believe it causes depression too because the iron stores in organs and the brain is an organ). Hard to push through it when you feel like that. Looking back on it, it makes sense but it came on gradually through the years. I attributed it to getting older and such. Was in for a shock when I was 45 (now 53). Never heard of it, let alone what the symptoms were. Knowledge is the key to getting the word out. Hang in there and good luck. Luckily I have 2 insurances (my wife has excellent insurance) otherwise I would still be paying for the 18 months of biweekly phlebotomies. Now it's 1-2 times every 3-4 months indefinitely (that's alittle more doable).
P.S. I was looking on google to see if all people with this genetic mutation are somehow related? Anybodys' thoughts out there would be appreciated.
Helo i was on 7-8000 when i was diagnosed 6 months ago. Its been up and down since then. Im on 5000 now. How r zou doing now? How is zour heart and liver?
My father has it and two of my brothers have it and my other brother should get tested. I'm 60 years old and have foot and ankle disabilities and wonder if this condition contributed to it. Medicare would not cover genetic testing for this so they did another blood test and my ferritin level is 324 which is high for a female so they are referring me to a hematologist and hoping they will cover for more testing for me. Thank you for your story!!
Your family sounds like mine! There's at least 7 family members of mine dealing with Hemochromatosis. I'm sorry you have foot and ankle disabilities, this condition can affect your joints, so it's possible that it made an existing situation worse. It's hard to tell with Hemochromatosis. I am glad you'll be seeing a hematologist and getting some more information! Thanks for watching!
@@KyleClaytonGore Really appreciate you telling your story and I'll let you know how I make out. Some of the foot and ankle could be from taking Levaquin many years ago as it destroys tendons so, I had one surgery on the left foot and three so far on the right foot with a tendon transfer that did not take but I'm sure if I have hemochromatosis it didn't help. The blood work Iv'e had so far shows that my ferritin is at 324 and I think for woman it should be between 12 and tops 150.
I have been aroun 8000 when i was diagnosed and a month ago it went up to 7900. Now its 5000. Its 6 months since i was diagnosed. Been doing phlebotomis every week. Any addvices for me? My heart and liver is affected the most. Thanks.
Today got my Ferritin test result. Compare with Dec 2018, it drop from 942 to 711 after done only 1x blood draw which was taken last January.
Wow!! That’s great! With that kind of progress you’ll be in normal ranges in no time! I go back in April to see how high we spiked after a 4 month break!
@@KyleClaytonGore
Yup, the doctor ask me to do phlebotomy once a month.
Hi Kyle, I did phlebotomy again on Feb 27, and my Ferritin level drop to 487. I think it's a good result.
Great result! I am going back in next week after a 4 month break.
Kyle, I think sauna helps lower the number. I did it a few times after I watched a video.
Hi 👋 just wondering did you experience any loss of appetite/ unexplained weightloss? Thank you
My ferritin level was 4300 just 6 months ago and now I am down to 720 and just went through blood-letting again today. My liver biopsy shows scarring as well as fatty liver. Hemochromatosis is no joke people. If a family member has it, you probably do too!
Wow you dropped fast! How often were phlebotomies? I was a 4300 and it took 16 months. Two years in and I'm just now at 300.
Thankfully I haven't had to do a liver biopsy! Everything looks fine in my numbers. Hemochromatosis is not a joke at all, for real! Half a dozen of my family have it and I'm sure more will in the future. Test your ferritin people!
My doctor ordered a fatty liver ultrasound a week ago, and thank God the result is negative. At the beginning I was wondering what it has anything to do hemachromatosis with fatty liver.
Glad it came back negative!!
Thanks Kyle.
I just purchased an e-book called "Ironbound" by Shelly Manning. I haven't finished reading it yet, I've only finished the first chapter, but it is claimed that it is possible for Haemochromatosis to be managed without all the venesections or chelation therapy... apparently through epigenetics.
I have problematic veins so if I could dodge the needles... that would be a big plus for me. Last time they tried... 4 jabs... no success. I still have an impressive bruise from the experience... so at least I can milk it for sympathy ;)
I currently have no association with the book other than being a customer and I don't know if it will work or not... or what you even have to do as yet... or how long it may take to see results... but just putting it out there that the book exists in case it may help someone.
(It seems to be well written so far)
I will check this book out, thank you for sharing!
Thank you for your story,I'm 58 was just diagnosed,my numbers are 550,I'm female.is the caring for this any different if you have nonhomechromitosis? Thank you
The treatment and preparation are the same. Thank you for watching. You’ve got this!!
I also have hereditary hemochromatosis. My numbers started at 750 it is now 178 . I started feeling run down . I went to the doctor, but they couldn't find anything wrong with me . Fast forward a couple of years my sibling was diagnosed with hereditary hemochromatosis. So I was told I needed to be tested . You need to try to eat a low iron diet but that won't be enough you will need to be monitored closely to see if you need a phlebotomy.
I was diagnosed with Iron overload 2 months ago at age 54. Since I was young I noticed my stomach always big even though I'm not overweight. Also I got blister in my mouth very often. I wonder if you guys also have the same symptom, I'm just curious if these related to iron overload or probably not.
Those could be symptoms, they are wide ranging. It also could be a side effect of something else Hemochromatosis causes. I am glad you’re getting it taken care of!
Hey Kyle. Did you have difficulty staying asleep or feel worse after just waking up?
I used to feel worse after waking up but it's been a lot better since my iron is lower now.
I hop u doing ok what tast should I have to find out my ferritin is high dr didnt tell me any thing he sad no worry is ok I have this problem for almost 5 years
Ask for a ferritin test and general blood labs. That should tell you!
PLEASE DO NOT RELY ON JUST FERRITIN! My ferritin was always fine (under 50). I was getting more and more ill for years, spent several years trying not to die (endless infections, pain, bedridden). I had been an elite athlete and med student. Finally age 45 my doc by mistake did full iron panel, saturation was very high. Can't do bloodletting so trying to do naturally. Cant believe doctors do not know about this as it is so common, they still seem to think more iron is better, and I guess they have no pill to sell you for this. I had spent my life savings seeing holistic docs etc for 30 years.
Wow, that's really interesting. My Doctor always tests both. It really is incredible what they don't know. You must be your own advocate on the healthcare system. Hope you get well and feel better!
Why can't you do therapeutic phlebotomy? That's the only way to reduce the stored ferritin. It took a year and a half to get mine down when I was diagnosed at age 45. Make sure you get a doctor familiar with the disease so you have a chance at a normal life. The phlebotomies are no fun but necessary. My disease was accidentally caught when I happened to mention brown spots (bronzing) on my shins to a doctor that just happened to be in my regular doctor's office. He said "That looks like hemochromatosis". I said "What".....? Next thing I know I'm getting a genetic test confirming gene mutation, sending me to an internist. Internist sending me for a liver biopsy, phlebotomies, etc. Liver was at 13,000 but no scarring....Fortunately. Talk to a doctor, please. Your family needs you around alot longer. Best of luck and take care.
By the way...my regular doctor, a year earlier sent me for a yearly blood work-up.... "Oh, your liver enzymes are elevated....sends me for a hepatitis test..negative....Uh, we'll test you in another 6 months....same thing 6 months later. A year wasted. So glad this other doctor was in that day. Needless to say he became my new doctor immediately. Just goes to show you not all doctors know it all. So... choose wisely.
Wow! Glad you got diagnosed and right on treatment. Good for you. With Hemochromatosis, you definitely have to be your own advocate and push Doctors sometimes. Take care and thank you for sharing your insights!!
@@KyleClaytonGore Thanks for your thoughts and well wishes, Kyle. Others are not so fortunate in getting a timely diagnosis, if at all.
@@michaeljames2183 wich state ar u in am looking for a dr to help me no dinos
One more question, besides donating blood did you eat or drink anything that helped with lowering ferritin. Thanks.
Not really. Just cut back on red meat and cooking with cast iron. I try and drink tea with meals, it helps block iron. Make sure to ask your Dr. what they think.
I think it is important to note that there are only a few ways to control ferritin (which is a bit different to iron) - blood loss through venesection (giving blood), menstruation, pregnancy etc. because these things use up stored ferritin.
You can be low/normal in iron and high in ferritin. I am only stating these things because I think it is dangerous for people who read these comments to assume they can make themselves better by changing their diet. People don't catch hemochromatosis from eating excess iron, so you can't make it better by following a low-iron diet. This is a blood disorder - and a common one.
The way your diet can help, like Kyle said - you can drink tea with meals - but most importantly: don't take supplements or exercise powders with iron in them, don't drink alcohol regularly. This is mostly about the way supplements work - they usually have an enormous amount of iron in them because they're designed for people whose bodies are programmed to take only what it needs from it. At the end of the day, iron-overload disorder a life-long medical condition that needs to be regulated by health professionals.
That is correct! I am anemic in my blood counts but have too much iron (ferritin). It's odd to think about. Unfortunately everything has iron, so all you can do is try to absorb less! Just make sure you have a healthy, balanced diet and are under the care of a Doctor of Medicine. Never trust a youtube comment!
I'm 12 and have hemochromatosis 😣
Wow! Hang in there!
I'm sorry to hear that Grace, but luckily you have been diagnosed early so you can maintain your ferritin numbers and won't have any damage done to your body. I was diagnosed at 45 yrs. old. How did you get diagnosed so early in life? I just happened to notice discolorations on my shins.
Are you doing phlebotomies yet? I would think you don't need them yet but I don't know what your ferritin numbers are? My doctor says to keep it under 50.
Good luck Gracie and keep your head up. Make sure you have a doctor who is familiar with your condition and sends you for a yearly blood test. My son is about your age and we haven't sent him for a test yet. Soon though.
@@michaeljames2183 my I ask wich state u live in I ben sik for 5 years no diynos I hop I can get help soon
How did you manage to get rid of it
3 years of phlebotomies!
My wife loose consciousness. She Literally waking up not knowing why she is laying down the floor with Bruce on her face. Later we know that it seems that eating beef mussels makes her stomach go wild on pain. And it often happens before her monthly menstruation arrive. But just yesterday a few days after her menstruation just passed she got an attack again by severe pain she fell and hit her face on the floor waking and she woke up with pain dragging herself to ask for help. Do you think she gave a iron over load. Thank.
Women who menstruate have lower iron levels due to their monthly cycle. So her iron may be high and she should get a ferritin test to see.
As far as the fainting, that’s something you should seek immediate medical attention for, I am not aware of that being a side effect.
Thanks 😊
Hi Guys, Can i ask have any of you suffered with itchy skin ? Many thanks, Mike
For me personally, I have not.
Yes! Very itchy skin and scalp!
Yes very itchy skin.
What kind of doctor you need if you have hemochroatosis.
You need an Oncologist
Hey Kyle I noticed your face is more tanned than the skin of your neck..is that one of the effects of hemochromatosis?..like hyperpigmentation..because I noticed my face is darker than the rest of my body and I'm thinking of testing for Hemochromatosis..just wanna know if the skin of your face can't get lighter anymore because of hemochromatosis..or is it just tan from the sun?
Thanks for your comment! You know, I've been wondering this too. I believe it is caused by Hemochromatosis because it never goes away. I don't avoid the sun and I don't wear sunscreen but I'm not outside tanning in the sun or anything. They do call Hemochromatosis "bronze diabetes". So I guess we'll find out when my Iron is gone!
Thanks for the reply. Oh you mean you're still doing phlebotomy to lower your iron? It's still not in the normal level? I'm sorry I have not watched all your videos yet. By the way this is the same person who commented on your blog about hemochromatosis. Thanks again for the reply. I will go to the doctor and get myself checked. I have irregular heart beat too for a really long time now and high blood pressure since I was a teenager and now I am 27 yrs old but the doctors can't find anything wrong with me they just gave me metoprolol beta blocker and they didn't do any more tests when beta blockers fixed my problems. But I stopped taking metoprolol after a year of taking it because I've been reading and listening to podcast about being healthy and I want to try to adjust my diet to see what happens and the doctor doesn't seem to have a problem with that. I think my doctors are not very good.. sometimes I think because I'm 27 yrs old they think I'm healthy and doesn't seem to care about preventing things from getting worse that's why I'm doing my own researches. I'm sorry this is a very long reply hehe. Thanks again.
I would also say, if your questioning getting a ferritin test, do it! It won't hurt anything to know and you'll be able to dig deeper if it's something else.
Keep digging in and standing up for yourself. Get second opinions if you need. Just listen to your body, work and getting healthier all the time, and visit the doctor! Hope you start to feel better and get some answers.
We all know that Hemachromatosis can cause impotence. I always live a healthy life style, means I love exercise, watch what I ate, I never smoke, no alcohol either. But since i was at age 35, I noticed that I couldnt maintain my erection. In other words my sex performance is unsatisfied. Now since I found out that I have Hemachromatosis, I relate it with my weak erection. What I want to know, does anyone knows or has experience whether the erection will be back to normal after ferritin level drop within normal level.
Your 🙄dr doesn’t order labs to test for Deficiencies unless you ask!!!!!!!! Years freaking years of high levels of iron. I’m 😠 because I was completely depleted of vitamin D AND HIGH IRON. WTH!!!!!!! Shoulder injury wasn’t healing after A year and a half well when you’re in a lot of pain and you don’t have any vitamin D or you’re deficient and other areas and iron overload and they act like it’s your fault. Doctors are a joke amen
They don’t want you to get better that’s for sure