Amazing to hear! I have had it since 2017 and have surgery next week. I am praying for mentsl clarity, great memory and the ability to strategise again 🙏
@@heidicarlson9600hi I'm really happy for you. Did you have high calcium? My Dr won't test for parathyroid hormone as my calcium is normal but I've read it can be normal and still have parathyroid issues.
Husband: Terrible neuropsychiatric problems with this, kidney stones, extreme debilitating fatigue, "lost my core," etc. Surgery a week ago--so much better in a few days!
@@christicyngier5988 Yep, and unfortunately it cuts the other way, too. Because so many parathyroid patients are older women, it took years for me (33yo male) to get a correct diagnosis. Multiple doctors ignored my high calcium until I did my own research and pushed for a PTH test.
I have my surgery consult later this week for an adenoma on my left parathyroid. So ready to start feeling better. Years of no answers, thinking I was just a hypochondriac, but now - I finally have the answers.
How did your consult go? I too, have been diagnosed with an adenoma on my lower left parathyroid, meeting with surgeon this week. My calcium is 11.5, my PTH is 68. My legs constantly ache, some days much worse than others (can barely walk some days), fatigue is severe, constant urination, I'm in my 50's, feeling like 90'ish..... BUT, no kidney stones, thankfully.
@@ggpollack4075 It was good. My surgery is 12/21/23 and I cannot wait to get this thing out of me. My calcium (last checked) was 11.6 and my PTH was 291. I have all of the above in my symptoms. I am 52 and also feel like I am in my 90's most days. Prayers you get in to get the surgery asap.
This was great to hear. The doctor said exactly what I was thinking myself - that if the calcium level is high or high normal, the PTH should be lower, not high Normal otherwise the system is out of kilter. PTH is sent out when calcium levels are low to encourage calcium extraction from the bone and vice versa. My GP did not bother about these numbers and I sought a referral to a specialist who stated - on my numbers - I had hyperparathyroidism. It seems to m,e that basic training is not given on interpreting the calcium to PTH ratio/relationship and Im wondering how long I’ve had this given I had kidney stones identified about 15 year ago and have for years had unusual heart palpitations that the heart doctor could not identify a cause (put down to menopause), both symptoms of possible hyperparathyroidism. Im waiting to see an endocrinologist for further evaluation but have rally lost faith in the medical system here in Australia.
It’s the same here in America with parathyroid disease. I’ve likely had primary hyperparathyroidism for over 20 years. And it was ME that ended up figuring it out after I was told by multiple drs I was fine.
@christicyngier5988 same. I noticed my calcium was slightly elevated for years. Dr's always said, "Nothing to worry about" I asked for follow up labs and my PTH is 140. Never would have known if I didn't advocate for myself.
I understand. Sounds like u have had Hyperparathroidism for yrs since you've already had kidney stones already.?I have a tumor on my Parathyroid glands. Dr. Is taking his sweet time setting a surgery date! I've waited for 1 month so far , seems like they really dont care about there patients! We have a condition that can effect our heart, kidneys , etc., to malfunction at any time also shorten our life! May God be with u through this.
I'm from Australia as well. How did you even broach the subject with your Dr? I don't know what to say to get the Dr to test me or give me a referral to an endocrinologist. I feel I've aged 20 years in the last year or so. Everything hurts and all I want to do is sleep, im only 61.
Dear Dr. Schneider, My boyfriend had parathyroid surgery to remove a gland 7 months ago. He had a high calcium level for at least 10 years, and after seeing his doctor he said it was urgent and recommended the surgery. Prior to the surgery, he had very minimal symptoms only kidney stones. His calcium level was at 13.5 before the parathyroid surgery afterwards calcium levels dropped to 9.8. He hasn't been the same since he has muscle tightness in arms, neck and shoulder area, ringing in his left ear to this day, hyper-insomnia, and lethargy. He has also developed rashes on his upper back and chest, and peeling of his skin. Noone seems to take his symptoms seriously and it's hard to watch a perfectly healthy 56 yr old man go through this torture. The insurance refused the referral for him to go back to an Endocronoligist because his calcium in their eyes is at a normal level now, so they have washed their hands with it.
@@laurasottile1956 I am so sorry to hear this. I have lost all faith and trust in doctors. My ENT that will eventually perform my parathyroid surgery now he has a fantastic reputation and wonderful bedside manner and very skilled. Other than that, I think most doctors just don’t care About humans. It’s terrifying. I have to figure out my insurance or I can’t even have surgery and my calcium levels are very high. Same with my PT levels. I need several tests done before I can have surgery and I don’t know how to afford it. I basically have every symptom of PTH being high and calcium levels high. I have primary hyperparathyroidism. I do believe I read about skin being affected and of course muscular and skeletal issues and on and on. The left side of my face is puffy and swollen. It messes with your teeth as well. And the rashes on him can be a sign of an auto immune disease. Praying he finds a good doctor someone who will listen and care. 🙏🏻
I just found out my calcium is 11.7, PTH is 200.7, vitamin D is 37. I see an endocrinologist June 10, 2024. I’m nervous. I just want to feel better. I’m so tired, fatigue is off the chart, leg and muscle pains and cramping, memory and forgetfulness. This video has been very informative. Thank you.
I’ve noticed a lot of doctors they all recommend surgery removal and there’s no other hope. Understanding if there’s lots of calcium in the blood, I’ve learned to research that you can help your parathyroid especially the calcium amount that’s flowing through your blood with the minerals, magnesium and vitamin K2, which helps pushes the calcium back to the bone And recent research shows. Please consult with your physician to see if this is true. Also research yourself and understand how vitamin K2 and vitamin D3 and magnesium work together to help pushes calcium that’s in your bloodstream back to the bones. Amazing research shows along with fasting and also forget about the mineral which your thyroid needs iodine research please????? happy health to everyone
The treatment is surgery because the tumor is the one that makes the gland to withdraw the calcium from your bones that leads to kidney stones, osteoporosis and all other symptoms
I started with all kinds of problems at 40. Heart, kidneys,my whole digestive system, lungs. Lupus, SJOGRENS Disease, breast cancer, gall bladder, uterus,teeth, electrical problem with heart ventricular tachycardia! POTS, you can see this is a mess. Now it’s Hyperparathyroidism, had scan. I’ve had high these symptoms since 42! I’m now 71 years old and I’m just being diagnosed!
I just had the parathyroid dye and scan on 2-23-2024. The tech showed me my 1 gland that lit up, so, I’m meeting with my doctor 3-19. Please pray for me?!
I know I commented already about my parathyroid hormone level and my hypercalcemia but I’m reading through the comments and not many were diagnosed with hyperparathyroid cancer. My new primary doctor I met her two times. She called me three weeks ago from home with the TV blaring and she told me my ultrasound show signs of cancer. Why would she say this to me? She didn’t say thyroid or parathyroid cancer Thanks to me googling to the point my anxiety has gotten through the roof. I’m awake at midnight and I have to work in the morning. I am so miserable and depressed and agony. Why would she just say it looks like cancer and send me this Tuesday to have a biopsy with an ENT and endocrinologist? Why wouldn’t she specify? I don’t expect an answer. I know I won’t get one, but I don’t think she should be my doctor anymore.
That sounds a frightening experience. Hopefully the doctor's concerns are unfounded and the parathyroid in question can be treated successfully. God bless you and your recovery.
They are tumors and very rarely cancer. They can't tell until a biopsy is done. I'd get a new doctor with a decent bedside manner. What have you found out?
@@catherinegragg7387 thank you so much. I have primary hyperparathyroidism with severe hypercalcemia. I have severe muscular and skeletal pain. I just found out I have osteopenia and osteoporosis. I don’t know the severity yet as again my crappy primary physician has not called me to reveal this information. I’m only going by the app I have through the hospital. I also had a CAT scan of my neck and I left urgent care a couple hours ago because the left side of my face. My jaw and my left eye have been swollen for three weeks and I’m on antiviral medicine and eventually possibly antibiotics. I’m chronically thirsty and live in the bathroom all through the night so I’m chronically fatigued for years and years. My last three primary doctors overlooked my calcium levels. I was dismissed I was made fun of gaslit, etc. I don’t trust doctors. I never have Today when I was in urgent care, the doctor told me he would look up my DEXA scan and my 4D CAT scan and tell me the results, but instead of nurse came in and gave me a brief update I haven’t stopped crying since not because I was told I have osteopenia and osteoporosis but because the doctor lied to me, he said he was gonna tell me everything and he lied I have to do one more test to be cleared to schedule surgery and that’s a cardiac clearance. The large tumor on my lower left lobe parathyroid is not cancerous. It’s benign. I just don’t know how to survive anymore and work without surgery. My hips feel like they’re cracking in half my wrist gives out on my ankles, etc. I’m so depressed and miserable I want to be with Thank you so very very very much for getting back to me and asking how I’m doing. I appreciate you.
I’ve diagnosed with parathyroid adenoma. Waiting to see the ENT specialist. Apart from feeling fatigue, dry mouth,aches,sore throat . But biggest suffering is hurting my mouth(which I think). Unable to talk for long or read loud. Mouth is sore, dryness,hurting like friction kind of soreness . Been to dentist no help. Any suggestions!!!🙏🏼
I had a 3.5 gland removal a few years ago. It was the worst surgical recovery of my life and took about a year to fully recover. I then had a miraculous turn around in my health. I felt amazing. Now on the third year, I’m feeling lousy again. I wish this was more studied. I feel like I can’t ever get answers. I had to diagnose myself as I was normocalcemic/hyperplasia and was told that doing surgery for that won’t help me. Well that was a lie. I was 39 when I had surgery. Kidney stones, severe joint pain, brain fog, fatigue were the worst symptoms
Have you been tested for MEN1? That’s what causes my parathyroid hyperplasia. One adenome removed 13 years ago and now the rest except half of one have to go next month.
People think its all i.n our head.i an out of work because of hyperparathyroidism.my brain fog and many other factors caused me to got until i have surgery
My complaints to my GP go back to 2017, was diagnosed this year, with Hyperparathyroidism and Breast Cancer. A drug called Prolia, high calcium in my blood, low vitamin D.
Wow! Sorry to hear that u also have breast cancer. This hyperparathroid is new to me. I'm getting surgery for this and having my breast cked out. I don't have a good feeling about this. How are you handling this? Must be tuff?
I wish parathyroid disease wouldn't be compared to thyroid disease, since they aren't the same in any way, and there is already way too much confusion between the two issues, ( thanks to the name "parathyroid" ). I've only been diagnosed with hyperparathyroidism for a few weeks now, and I'm already tired of people thinking I'm talking about a thyroid problem. As far as I've ever heard though, I WISH my disease was with my thyroid, as opposed to this.
It’s because a lot of people never heard of parathyroid. Trust me I was of them until I went and read up what causes elevated calcium levels. Mine has been high since 2021. The last time it was good was 2016. People need to be educated about the difference between thyroid and parathyroid.
I wonder if anyone is being ordered a dexa scan to check for osteoporosis? I am in Australia and in the process of seeing a surgeon, don't forget different pathologies have different brands of tests for the same blood examinations and can have different levels of normal.
@@lacadaca8 before I can have surgery, I need a DEXA scan CAT scan of my parathyroids. I’ve already had two ultrasounds of it. Cardiac clearance and lab work. My bones hurt my muscles hurt. I think I have every symptom under the sun of primary parathyroidism and hypercalcemia disease. I was just in the hospital, but they can’t help me until I can get all this test done to have surgery.
I am still so miserable with primary hyperparathyroidism and hypercalcemia. My levels are almost at 12 and I went in the hospital where I thought if you have an IV of fluids, it can flush calcium, but the ER doctor told me that was not true. I’m waiting on my bone density test, my cardiac clearance and now a CAT scan of my parathyroid and lab work before they can even consider doing surgery I can hardly function now I feel like I am unconscious floating through my day, not understanding or processing anything 😢 I feel so sad and lost and depressed and anxious. I’m also a septic shock Survivor and wonder if any of this has to do with the parathyroids.
Mine too, recently had Nuclear Iodine Study and thyroglobulin blood test all point to cancer. I am going to Cancer Institute in 10 days. I am unable to get into Endocrinologist until July 4 months from now! 😢
I’m surprised there wasn’t more mention of low vitamin D. My nephrologist and PCP seem to think that once my vitamin D levels are back up to a normal level, then my PTH levels will drop. Thoughts? I am 63 and have every symptom of hyperparathyroidism 😢
Keep insisting on regular blood tests to check ck your calcium and pth levels if you have the symptoms. I was in a similar position to you.... Vitamin D levels very low and told to take supplements. This eased some of the joint pain but not much. Turns out I had an adenoma on the bottom left gland and had it removed last week. Good luck.
@@jeanetteclayton3841 thank you for your advice! I’m seeing my PCP this upcoming week. My calcium levels are actually inching up. Last check they were at 9. I’m curious to see what they’ll be this time. I spent all day in bed yesterday due to severe body aches, fatigue, and that horrible burning feeling in my legs/torso. I have an order from my nephrologist for a re-check of my PTH levels and Vitamin D. Will ask for calcium from my PCP if that’s not on there, too. I just know that I have a diseased parathyroid gland (without knowing). I have a large kidney stone right now in my left kidney, CKD stage 3A on top of all of this. It’s clearer to me than it is the doctors! I’ve been getting kidney stones for 20+ years! So glad for you that they fixed your issue! Prayers for continued healing! 🙏🏼 ❤️🩹
The surgery is around 20 minutes at Norman Institute under mild sedation. There is no cure for a tumor. I’d rather have it removed than let it keep growing esp since most of us have 2-3 three other back up parathyroids that are tumor-free. Get the diseased gland out that is causing all the debilitating symptoms. Surgery sounds good to me vs the alternative. @@Nycholletta
Thank you. Now what about if the test was not done early in the morning without fasting? My PTH was 112 not fasting. Previously when I was fasting three months ago my PTH was 77 . I’ve been told I have RA. Could my hyper parhyperthyroid b mistaken for RA?
My useless quack doctors didn't bother to tell me that I have hyperthyroidism. All they talk about is stop using salt and lose weight. They wanted me on dyalisis when my eGFR was over twenty.
Hi i have been diagnosed with hypoparathyroidism is this low calcium i take adcal and calcitrol but dont feel any better my bones hurt and feel fatigued i do wounder if meds are making me worse any ideas
So what if the calcium level is normal and the vitamin D connection in secondary? I feel like ive been suffering for ten years or more, so painful to walk, I'm 49 now. They kept sending me to physical therapy, told to exercise, and offered mental health drugs. But my hands were very stiff one day when i woke up. And Xray of my hands gave the indication. My bones have that degenerate lacy look. I just found out. So now im worried, i have that tingling in my legs for two years and my face the other day.
Excellent! Also, it should be noted that these parathyroid tumors can actually MIGRATE to other parts of the body--even as far down as the navel! Another good reason for removing them, to be sure.
Norman Institute says these scans are usually inaccurate by 50% or more. Check out their website, they explain in detail why. Great info there. I don’t know your age, but if you are over 40, you should be in the 9s. 11 is a clear indicator you have the disease.
Scans are often negative, and most doctors/surgeons experienced with hyperparathyroidism will rely on bloodwork, not scans, for diagnoses. Because of the location of the glands (behind the thyroid) the thyroid often obscures the view of them on an ultrasound or ct. On a sestamibi scan (probablspelled that wong, sorry), the nuclear meds they inject is attracted to the adenomas, but with a small adenoma, multiples, and hyperplasia, the concentration is often harder to see, and the thyroid can obstruct the view of them in that type of scan as well. Typically, a quality surgeon will use those scans not as a diagnostic tool, but as a way to check that the parathyroid glands aren't in any crazy places, as in utero, the glands descend into place and can sometimes descend too low, into the cheat, or not descend, and be stuck under the jaw, so they use the scans to try to rule that out, as well as use the nuclear injection from the septamibi scan in surgery, by using a gamma probe to measure concentrations of that nuclear substance in the glands their looking at. Because it concentrates in overactive glands, the gamma probe will show high levels of it in the hyperactive glands, confirming that those are the "bad" ones that they need to remove, or ensuring, by lack of concentration of the substance when probed, that they don't remove any good glands. In short, never ever rely on a negative scan to say whether you have hyperparathyroidism or not. If a doctor/surgeon is doing that, go to a different doctor. Most scans are negative, but that doesn't mean you don't have the disease, just that they aren't showing up on it. Many places also have lower quality scans or are not as trained in finding the parathyroid glands with them, especially because they can vary in size and location. Though rare, you can also have more or less than four glands depending on how you developed. So definitely go get a second opinion if possible, especially if your levels are abnormal. The only cure at this time is surgery, and the longer you have it the more damage done to your bones and body, which is one of the biggest reasons why the "wait and see" method, where you wait and see if your calcium gets to some specific, high level, is so dangerous. Anyway, sorry for the ramble, but I hope this helped and if you're dealing with this you can get the help you need! It sucks to say the least.
Does or Did anyone have any ear issues with this? I had a D deficiency ( I was a 12). And I had gotten a clogged / pressure feeling in my right ear with ringing. Then my Parathyroid level was high. They think it’s bc my D was very deficient. I’m now taking in 1,200 mg of calcium a day and am getting tested in 3 months to see if the parathyroid number comes down. So again did anyone have a clogged / pressure in there ear as a symptom? And if so did it go away?
I just found out my PTH is high and I have/ had inner ear pressure and now my balance is effected Drs never found a root cause being that I did not have a physical injury. Maybe it does play a role
The clogging eventually came down but it lingers and it still rings time to time … I can walk fine but I have a swaying sensation all other balance issues were ruled out I had a VEMP test done on my ear and balance so that’s how they know it’s effected but no physical evidence and a year later finding out PTH is high.
Most definitely, yes! I have had severe ear congestion, ear pain, and ringing for years. I am constantly sniffing to clean my clogged ears. I can’t hear well from this happening. My calcium is just over the limit by .1. I’m planning on getting the surgery soon. I’ve been suffering with over a dozen debilitating symptoms with no answers until now. It’s tragic how underdiagnosed and misdiagnosed this disease is.
I have been on vitamin d for the last six weeks.it is making me miserable and my pth keeps fluctuating.i have a gland in my esophagus and my chest that get bigger every time i take the d pill
Hello. My blood test shows high PTH levels ,,, next test a parathyroid scintillation,, shows no edenoma or growth on the parathyroid. But my symptoms keep geeting worst and worst All You mentioned i have,,, But in the last 2 months the aritmia is going crazy and during the last 2 weeks i hvw daily aritimias ,,, My doctors are very calmn and do not present any possible solution or treatment. Is a terrible place to be
You have to keep pushing, it happened to me the scan nor the ultrasound detected the adenoma Dr. Took the chance did the surgery and he found the bad parathyroid took it out no lie in 2 days I felt like myself again in 1 week i felt amazing
So far my experience has always been the same - doctor tells me my calcium is high but due to my pth not being high no one wants to do surgery. It's been this way since 2001.
High calcium with normal PTH is a problem. I don’t think internal medica one drs are taught this - scary, considering they are the ones who run the standard tests. It’s also important to adjust the range the lab gives for your age as the range includes levels for kids through adults. I hope you find answers soon. Please continue to pursue the high calcium! It can cause a lot of problems as time goes on.
My calcium is elevated at 2.7 Parathyroid goes up and down 2 readings at above seven ,others high Normal range I have fatigue aches , insomnia anxiety Each note on blood tests says consider hyperparathyroidism ? I fee like i am being ignored 😢 I know my body and i just do not feel rite
My ionized calcium blood levels keeps coming back high. My calcium and vitamin D levels are almost non existent. I think this has been going on for years. I have severe scoliosis with most of my back fused with rods. I have osteoarthritis, osteoporosis, and bone pain. I'm starting to think that I have hyperparathyroidism?
What are your numbers? Calcium and pth? Bone pain is one of the top 2 symptoms. If you are over 10.0 in calcium, and you are over 40, it’s a most definite yes.
My calcium was 10 and PTH 96. The consultant said it was my age 😡. I have chronic arm pains , pins and needles that wake me up, I was sent for carpal tunnel surgery and the surgeon said "this is not carpal tunnel" go back to your doctor. Bone pain in my right arm is evil😢
my teeth never came though they said it was me all my life it was no calcium in my teeth lucky that was all my bones are healthy far as i last checked no processed food fizzy drinks drink as much as i can hot water do not like cold
If you are having bone loss from the disease, then you will have more bone loss in your teeth. It’s called brittle bone disease. Teeth are bone. Do you know your pth and calcium levels?
Wow- I have been suffering from this for 12 years- I had surgery yesterday and am already noticing that my brain is a lot clearer!!!
My thyroid numbers were always fine- I had 1 dr check the parathyroid and thank God that he did. I am 43 year old female
Amazing to hear! I have had it since 2017 and have surgery next week. I am praying for mentsl clarity, great memory and the ability to strategise again 🙏
Did anyone have a clogged/ pressure in the ear as a symptom?
@@heidicarlson9600hi I'm really happy for you. Did you have high calcium? My Dr won't test for parathyroid hormone as my calcium is normal but I've read it can be normal and still have parathyroid issues.
Yes! I’ve had ear congestion and pain for years! I’m constantly sniffing to clear my clogged ears. @@RubberMasks
I’ve been suffering since 2015 was told I was menopausal, but in 2024 finally was diagnosed and having surgery.
Husband: Terrible neuropsychiatric problems with this, kidney stones, extreme debilitating fatigue, "lost my core," etc. Surgery a week ago--so much better in a few days!
Women in their 50’s and 60’s… we are nearly ALL told this is menopause. It’s criminal.
The gaslighting in this area is unreal. Disgusting. I had to figure my own diagnosis out and get it confirmed by a surgeon.
@@christicyngier5988 Yep, and unfortunately it cuts the other way, too. Because so many parathyroid patients are older women, it took years for me (33yo male) to get a correct diagnosis. Multiple doctors ignored my high calcium until I did my own research and pushed for a PTH test.
Been suffering for years finally diagnosed last year and I have my surgery on Friday. Hoping for more energy, less pain and brain clarity.
Thank you Dr.
Good luck. Insomnia can happen
I have my surgery consult later this week for an adenoma on my left parathyroid. So ready to start feeling better. Years of no answers, thinking I was just a hypochondriac, but now - I finally have the answers.
How did your consult go? I too, have been diagnosed with an adenoma on my lower left parathyroid, meeting with surgeon this week. My calcium is 11.5, my PTH is 68. My legs constantly ache, some days much worse than others (can barely walk some days), fatigue is severe, constant urination, I'm in my 50's, feeling like 90'ish..... BUT, no kidney stones, thankfully.
@@ggpollack4075 It was good. My surgery is 12/21/23 and I cannot wait to get this thing out of me. My calcium (last checked) was 11.6 and my PTH was 291. I have all of the above in my symptoms. I am 52 and also feel like I am in my 90's most days. Prayers you get in to get the surgery asap.
@@ggpollack4075I think you have something called normocalcemia or something like that.
How did things go? My consult us feb 21.
@@Nycholletta you be ok is a very quick operation back to normal afterwards
I WAS JUST DIAGNOSED TODAY 4-16-24, now I'm trying to learn everything I can. Thx for the info.
Surgery as soon as possible
This was great to hear. The doctor said exactly what I was thinking myself - that if the calcium level is high or high normal, the PTH should be lower, not high Normal otherwise the system is out of kilter. PTH is sent out when calcium levels are low to encourage calcium extraction from the bone and vice versa. My GP did not bother about these numbers and I sought a referral to a specialist who stated - on my numbers - I had hyperparathyroidism. It seems to m,e that basic training is not given on interpreting the calcium to PTH ratio/relationship and Im wondering how long I’ve had this given I had kidney stones identified about 15 year ago and have for years had unusual heart palpitations that the heart doctor could not identify a cause (put down to menopause), both symptoms of possible hyperparathyroidism. Im waiting to see an endocrinologist for further evaluation but have rally lost faith in the medical system here in Australia.
It’s the same here in America with parathyroid disease. I’ve likely had primary hyperparathyroidism for over 20 years. And it was ME that ended up figuring it out after I was told by multiple drs I was fine.
I'm sorry. God understands all this. Hard to go through. May u have peace.
@christicyngier5988 same. I noticed my calcium was slightly elevated for years. Dr's always said, "Nothing to worry about" I asked for follow up labs and my PTH is 140. Never would have known if I didn't advocate for myself.
I understand. Sounds like u have had Hyperparathroidism for yrs since you've already had kidney stones already.?I have a tumor on my Parathyroid glands. Dr. Is taking his sweet time setting a surgery date! I've waited for 1 month so far , seems like they really dont care about there patients! We have a condition that can effect our heart, kidneys , etc., to malfunction at any time also shorten our life! May God be with u through this.
I'm from Australia as well. How did you even broach the subject with your Dr? I don't know what to say to get the Dr to test me or give me a referral to an endocrinologist. I feel I've aged 20 years in the last year or so. Everything hurts and all I want to do is sleep, im only 61.
Dear Dr. Schneider,
My boyfriend had parathyroid surgery to remove a gland 7 months ago. He had a high calcium level for at least 10 years, and after seeing his doctor he said it was urgent and recommended the surgery. Prior to the surgery, he had very minimal symptoms only kidney stones. His calcium level was at 13.5 before the parathyroid surgery afterwards calcium levels dropped to 9.8. He hasn't been the same since he has muscle tightness in arms, neck and shoulder area, ringing in his left ear to this day, hyper-insomnia, and lethargy. He has also developed rashes on his upper back and chest, and peeling of his skin. Noone seems to take his symptoms seriously and it's hard to watch a perfectly healthy 56 yr old man go through this torture. The insurance refused the referral for him to go back to an Endocronoligist because his calcium in their eyes is at a normal level now, so they have washed their hands with it.
@@laurasottile1956
I am so sorry to hear this. I have lost all faith and trust in doctors. My ENT that will eventually perform my parathyroid surgery now he has a fantastic reputation and wonderful bedside manner and very skilled. Other than that, I think most doctors just don’t care About humans. It’s terrifying.
I have to figure out my insurance or I can’t even have surgery and my calcium levels are very high. Same with my PT levels. I need several tests done before I can have surgery and I don’t know how to afford it.
I basically have every symptom of PTH being high and calcium levels high. I have primary hyperparathyroidism. I do believe I read about skin being affected and of course muscular and skeletal issues and on and on.
The left side of my face is puffy and swollen. It messes with your teeth as well. And the rashes on him can be a sign of an auto immune disease.
Praying he finds a good doctor someone who will listen and care. 🙏🏻
I just found out my calcium is 11.7, PTH is 200.7, vitamin D is 37. I see an endocrinologist June 10, 2024. I’m nervous. I just want to feel better. I’m so tired, fatigue is off the chart, leg and muscle pains and cramping, memory and forgetfulness. This video has been very informative. Thank you.
You need the surgery
I had my parathyroid.out...don't be nervous...u feel 100% better the next day ...no pain ..no sore throat...Get it out.
Get the surgery..
I had a lot of symptoms..starting with kidney stones..bone pain..fatigue..heart palpitations. Was a big one...hypertension. 😊
@@lisaagunzo5281 I had all the symptoms except kidney stones. Day 3 after surgery and I am feeling much better. Easy surgery.
I’ve noticed a lot of doctors they all recommend surgery removal and there’s no other hope. Understanding if there’s lots of calcium in the blood, I’ve learned to research that you can help your parathyroid especially the calcium amount that’s flowing through your blood with the minerals, magnesium and vitamin K2, which helps pushes the calcium back to the bone And recent research shows. Please consult with your physician to see if this is true. Also research yourself and understand how vitamin K2 and vitamin D3 and magnesium work together to help pushes calcium that’s in your bloodstream back to the bones. Amazing research shows along with fasting and also forget about the mineral which your thyroid needs iodine research please????? happy health to everyone
Thanks for your comment. I wish doctors will tell us about natural way of curing sickness
The treatment is surgery because the tumor is the one that makes the gland to withdraw the calcium from your bones that leads to kidney stones, osteoporosis and all other symptoms
Spot on with symptoms abd premature aging. Dr's dont pay attention to calcium levels.
I’m in my late 30’s and I pushed the issue. PTH 99 calcium 9.1 vitamin D 33. Scheduled for neck scan! I’ve been suffering since early 20’s
WhT are ur symptoms
I started with all kinds of problems at 40. Heart, kidneys,my whole digestive system, lungs. Lupus, SJOGRENS Disease, breast cancer, gall bladder, uterus,teeth, electrical problem with heart ventricular tachycardia! POTS, you can see this is a mess. Now it’s Hyperparathyroidism, had scan. I’ve had high these symptoms since 42! I’m now 71 years old and I’m just being diagnosed!
I just had the parathyroid dye and scan on 2-23-2024. The tech showed me my 1 gland that lit up, so, I’m meeting with my doctor 3-19. Please pray for me?!
Great video!!!!! So helpful!
I know I commented already about my parathyroid hormone level and my hypercalcemia but I’m reading through the comments and not many were diagnosed with hyperparathyroid cancer. My new primary doctor I met her two times. She called me three weeks ago from home with the TV blaring and she told me my ultrasound show signs of cancer. Why would she say this to me? She didn’t say thyroid or parathyroid cancer
Thanks to me googling to the point my anxiety has gotten through the roof. I’m awake at midnight and I have to work in the morning. I am so miserable and depressed and agony.
Why would she just say it looks like cancer and send me this Tuesday to have a biopsy with an ENT and endocrinologist? Why wouldn’t she specify? I don’t expect an answer. I know I won’t get one, but I don’t think she should be my doctor anymore.
That sounds a frightening experience. Hopefully the doctor's concerns are unfounded and the parathyroid in question can be treated successfully. God bless you and your recovery.
They are tumors and very rarely cancer. They can't tell until a biopsy is done. I'd get a new doctor with a decent bedside manner. What have you found out?
@@catherinegragg7387 thank you so much. I have primary hyperparathyroidism with severe hypercalcemia.
I have severe muscular and skeletal pain. I just found out I have osteopenia and osteoporosis. I don’t know the severity yet as again my crappy primary physician has not called me to reveal this information. I’m only going by the app I have through the hospital.
I also had a CAT scan of my neck and I left urgent care a couple hours ago because the left side of my face. My jaw and my left eye have been swollen for three weeks and I’m on antiviral medicine and eventually possibly antibiotics.
I’m chronically thirsty and live in the bathroom all through the night so I’m chronically fatigued for years and years. My last three primary doctors overlooked my calcium levels.
I was dismissed I was made fun of gaslit, etc. I don’t trust doctors. I never have
Today when I was in urgent care, the doctor told me he would look up my DEXA scan and my 4D CAT scan and tell me the results, but instead of nurse came in and gave me a brief update
I haven’t stopped crying since not because I was told I have osteopenia and osteoporosis but because the doctor lied to me, he said he was gonna tell me everything and he lied
I have to do one more test to be cleared to schedule surgery and that’s a cardiac clearance. The large tumor on my lower left lobe parathyroid is not cancerous. It’s benign. I just don’t know how to survive anymore and work without surgery.
My hips feel like they’re cracking in half my wrist gives out on my ankles, etc. I’m so depressed and miserable I want to be with
Thank you so very very very much for getting back to me and asking how I’m doing. I appreciate you.
I’ve diagnosed with parathyroid adenoma. Waiting to see the ENT specialist. Apart from feeling fatigue, dry mouth,aches,sore throat . But biggest suffering is hurting my mouth(which I think). Unable to talk for long or read loud. Mouth is sore, dryness,hurting like friction kind of soreness . Been to dentist no help. Any suggestions!!!🙏🏼
Get the surgery asap.
I had a 3.5 gland removal a few years ago. It was the worst surgical recovery of my life and took about a year to fully recover. I then had a miraculous turn around in my health. I felt amazing. Now on the third year, I’m feeling lousy again. I wish this was more studied. I feel like I can’t ever get answers. I had to diagnose myself as I was normocalcemic/hyperplasia and was told that doing surgery for that won’t help me. Well that was a lie. I was 39 when I had surgery. Kidney stones, severe joint pain, brain fog, fatigue were the worst symptoms
How is it now for you, my PTH are fluctuating(129/83/95) and calcium are normal
Why was your recovery so hard? Most people say they felt better immediately.
What is your calcium?
@@varungupta9629
Have you been tested for MEN1? That’s what causes my parathyroid hyperplasia. One adenome removed 13 years ago and now the rest except half of one have to go next month.
I understand try to be strong.
People think its all i.n our head.i an out of work because of hyperparathyroidism.my brain fog and many other factors caused me to got until i have surgery
My complaints to my GP go back to 2017, was diagnosed this year, with Hyperparathyroidism and Breast Cancer. A drug called Prolia, high calcium in my blood, low vitamin D.
Did Prolia cause the problems?
Wow! Sorry to hear that u also have breast cancer. This hyperparathroid is new to me. I'm getting surgery for this and having my breast cked out. I don't have a good feeling about this. How are you handling this? Must be tuff?
I wish parathyroid disease wouldn't be compared to thyroid disease, since they aren't the same in any way, and there is already way too much confusion between the two issues, ( thanks to the name "parathyroid" ). I've only been diagnosed with hyperparathyroidism for a few weeks now, and I'm already tired of people thinking I'm talking about a thyroid problem. As far as I've ever heard though, I WISH my disease was with my thyroid, as opposed to this.
It’s because a lot of people never heard of parathyroid. Trust me I was of them until I went and read up what causes elevated calcium levels. Mine has been high since 2021. The last time it was good was 2016. People need to be educated about the difference between thyroid and parathyroid.
I have just had the surgery. It was quick and simple. Day 3 and feeling much better.
What are you classifying as high calcium?
Over 10. An endocrinologist uses other blood breakdowns to determine it exact. My calculated to 10.9
Having my surgery next Tuesday
How did it go
Not bad. I am feeling some better already
@Cliff-KI5OPP i had mine 2 weeks ago i feel tired but some of the aches have gone
Wow .. Thank You, this has been so insightful !!
I wonder if anyone is being ordered a dexa scan to check for osteoporosis?
I am in Australia and in the process of seeing a surgeon, don't forget different pathologies have different brands of tests for the same blood examinations and can have different levels of normal.
@@lacadaca8 before I can have surgery, I need a DEXA scan CAT scan of my parathyroids. I’ve already had two ultrasounds of it. Cardiac clearance and lab work.
My bones hurt my muscles hurt. I think I have every symptom under the sun of primary parathyroidism and hypercalcemia disease. I was just in the hospital, but they can’t help me until I can get all this test done to have surgery.
I had DEXA scan with Osteoporosis in the normal related bones. My calcium is normal. PTH is high.
I tried searching on FB and couldn’t find the doctor
I am still so miserable with primary hyperparathyroidism and hypercalcemia. My levels are almost at 12 and I went in the hospital where I thought if you have an IV of fluids, it can flush calcium, but the ER doctor told me that was not true.
I’m waiting on my bone density test, my cardiac clearance and now a CAT scan of my parathyroid and lab work before they can even consider doing surgery
I can hardly function now I feel like I am unconscious floating through my day, not understanding or processing anything 😢
I feel so sad and lost and depressed and anxious. I’m also a septic shock Survivor and wonder if any of this has to do with the parathyroids.
My calcium 10.1 to 11.0 for at least 3 yrs. Now Pth is 144. Next step?
Mine too, recently had Nuclear Iodine Study and thyroglobulin blood test all point to cancer. I am going to Cancer Institute in 10 days. I am unable to get into Endocrinologist until July 4 months from now! 😢
ONLY SURGERY
Norman Parathyroid Center in Tampa, Florida
Just had a Nuclear Sestambi Scan of Parathyroid have a 1.2 size solid mass! NO ONE BELIEVED ME NO ONE
@@luchi26100disappointed why only surgery
How high is the pth level to be comsidered not good?
10 and over
Over 25
@@CrisadelA-x8n mine is 184 and my calcium is 11.6 both considered high
I need one for Nashville area
I’m surprised there wasn’t more mention of low vitamin D. My nephrologist and PCP seem to think that once my vitamin D levels are back up to a normal level, then my PTH levels will drop. Thoughts? I am 63 and have every symptom of hyperparathyroidism 😢
Keep insisting on regular blood tests to check ck your calcium and pth levels if you have the symptoms. I was in a similar position to you.... Vitamin D levels very low and told to take supplements. This eased some of the joint pain but not much. Turns out I had an adenoma on the bottom left gland and had it removed last week. Good luck.
@@jeanetteclayton3841 thank you for your advice! I’m seeing my PCP this upcoming week. My calcium levels are actually inching up. Last check they were at 9. I’m curious to see what they’ll be this time. I spent all day in bed yesterday due to severe body aches, fatigue, and that horrible burning feeling in my legs/torso. I have an order from my nephrologist for a re-check of my PTH levels and Vitamin D. Will ask for calcium from my PCP if that’s not on there, too. I just know that I have a diseased parathyroid gland (without knowing). I have a large kidney stone right now in my left kidney, CKD stage 3A on top of all of this. It’s clearer to me than it is the doctors! I’ve been getting kidney stones for 20+ years! So glad for you that they fixed your issue! Prayers for continued healing! 🙏🏼 ❤️🩹
You do not need to see the endocrinologist, you need surgery to remove the tumor that produces all the problems
Does your parathyroid disease ever go away without being removed for eg by taking more vitD?
No -it’s a benign tumor that must be removed. There is no cure other than surgery.
No
You would think by now that would have found a cure other then surgery. But nope it's just surgery.
The surgery is around 20 minutes at Norman Institute under mild sedation. There is no cure for a tumor. I’d rather have it removed than let it keep growing esp since most of us have 2-3 three other back up parathyroids that are tumor-free. Get the diseased gland out that is causing all the debilitating symptoms. Surgery sounds good to me vs the alternative. @@Nycholletta
Thank you. Now what about if the test was not done early in the morning without fasting? My PTH was 112 not fasting. Previously when I was fasting three months ago my PTH was 77 .
I’ve been told I have RA. Could my hyper parhyperthyroid b mistaken for RA?
Is anyone having this surgery in Denver?
My useless quack doctors didn't bother to tell me that I have hyperthyroidism. All they talk about is stop using salt and lose weight. They wanted me on dyalisis when my eGFR was over twenty.
Can you have parathyroid and other arthritis at the same time
Hi i have been diagnosed with hypoparathyroidism is this low calcium i take adcal and calcitrol but dont feel any better my bones hurt and feel fatigued i do wounder if meds are making me worse any ideas
So what if the calcium level is normal and the vitamin D connection in secondary? I feel like ive been suffering for ten years or more, so painful to walk, I'm 49 now. They kept sending me to physical therapy, told to exercise, and offered mental health drugs. But my hands were very stiff one day when i woke up. And Xray of my hands gave the indication. My bones have that degenerate lacy look. I just found out. So now im worried, i have that tingling in my legs for two years and my face the other day.
Do you consider ionized calcium over regular calcium
Excellent! Also, it should be noted that these parathyroid tumors can actually MIGRATE to other parts of the body--even as far down as the navel! Another good reason for removing them, to be sure.
Wow! I just discovered I have this. And still waiting weeks for a surgery date?
So what happens when both tests are high, the pth 90 and calcium 11. but the parathyroid scan says normal without any adenomas?
Hmmmm what kind of scan. If it’s an ultrasound I would say request a more definitive scan. Ultra sounds are cool but they don’t catch everything
Norman Institute says these scans are usually inaccurate by 50% or more. Check out their website, they explain in detail why. Great info there. I don’t know your age, but if you are over 40, you should be in the 9s. 11 is a clear indicator you have the disease.
Scans are often negative, and most doctors/surgeons experienced with hyperparathyroidism will rely on bloodwork, not scans, for diagnoses. Because of the location of the glands (behind the thyroid) the thyroid often obscures the view of them on an ultrasound or ct. On a sestamibi scan (probablspelled that wong, sorry), the nuclear meds they inject is attracted to the adenomas, but with a small adenoma, multiples, and hyperplasia, the concentration is often harder to see, and the thyroid can obstruct the view of them in that type of scan as well. Typically, a quality surgeon will use those scans not as a diagnostic tool, but as a way to check that the parathyroid glands aren't in any crazy places, as in utero, the glands descend into place and can sometimes descend too low, into the cheat, or not descend, and be stuck under the jaw, so they use the scans to try to rule that out, as well as use the nuclear injection from the septamibi scan in surgery, by using a gamma probe to measure concentrations of that nuclear substance in the glands their looking at. Because it concentrates in overactive glands, the gamma probe will show high levels of it in the hyperactive glands, confirming that those are the "bad" ones that they need to remove, or ensuring, by lack of concentration of the substance when probed, that they don't remove any good glands. In short, never ever rely on a negative scan to say whether you have hyperparathyroidism or not. If a doctor/surgeon is doing that, go to a different doctor. Most scans are negative, but that doesn't mean you don't have the disease, just that they aren't showing up on it. Many places also have lower quality scans or are not as trained in finding the parathyroid glands with them, especially because they can vary in size and location. Though rare, you can also have more or less than four glands depending on how you developed. So definitely go get a second opinion if possible, especially if your levels are abnormal. The only cure at this time is surgery, and the longer you have it the more damage done to your bones and body, which is one of the biggest reasons why the "wait and see" method, where you wait and see if your calcium gets to some specific, high level, is so dangerous. Anyway, sorry for the ramble, but I hope this helped and if you're dealing with this you can get the help you need! It sucks to say the least.
@dudeguy8127 thank you for your indepth reply. It is much appreciated.
@@dudeguy8127what you are saying is absolutely correct. My surgeon said the exact same. Thank you for making NG this valid point
Does or Did anyone have any ear issues with this? I had a D deficiency ( I was a 12). And I had gotten a clogged / pressure feeling in my right ear with ringing. Then my Parathyroid level was high. They think it’s bc my D was very deficient. I’m now taking in 1,200 mg of calcium a day and am getting tested in 3 months to see if the parathyroid number comes down. So again did anyone have a clogged / pressure in there ear as a symptom? And if so did it go away?
I just found out my PTH is high and I have/ had inner ear pressure and now my balance is effected Drs never found a root cause being that I did not have a physical injury. Maybe it does play a role
The clogging eventually came down but it lingers and it still rings time to time … I can walk fine but I have a swaying sensation all other balance issues were ruled out I had a VEMP test done on my ear and balance so that’s how they know it’s effected but no physical evidence and a year later finding out PTH is high.
Most definitely, yes! I have had severe ear congestion, ear pain, and ringing for years. I am constantly sniffing to clean my clogged ears. I can’t hear well from this happening. My calcium is just over the limit by .1. I’m planning on getting the surgery soon. I’ve been suffering with over a dozen debilitating symptoms with no answers until now. It’s tragic how underdiagnosed and misdiagnosed this disease is.
I've had clogged ears from wax build up forever. If your calcium and pth are high you shouldn't be taking that much calcium.
Has anyone had daily and nightly fevers and night sweats?
I have been on vitamin d for the last six weeks.it is making me miserable and my pth keeps fluctuating.i have a gland in my esophagus and my chest that get bigger every time i take the d pill
They prescribed me with statins instead of looking at this because my calcium levels are high
Hello. My blood test shows high PTH levels ,,, next test a parathyroid scintillation,, shows no edenoma or growth on the parathyroid. But my symptoms keep geeting worst and worst All You mentioned i have,,, But in the last 2 months the aritmia is going crazy and during the last 2 weeks i hvw daily aritimias ,,, My doctors are very calmn and do not present any possible solution or treatment. Is a terrible place to be
You have to keep pushing, it happened to me the scan nor the ultrasound detected the adenoma Dr. Took the chance did the surgery and he found the bad parathyroid took it out no lie in 2 days I felt like myself again in 1 week i felt amazing
Have a Nuclear Iodine Study
Second opinion!
Is a calcium level of 10.4 worrisome?
What is your age?
@@znmm2588 55
Yes
55
Yes especially if all your lab work shows it being elevated all of the time.
Can you talk about Lithium please ?x
So far my experience has always been the same - doctor tells me my calcium is high but due to my pth not being high no one wants to do surgery. It's been this way since 2001.
I would contact the Norman Institute if I were you.
@@znmm2588 I actually finally had surgery Dec 2023. But thank you for your kindness!
Im glad you are doing well and had the surgery! I’m getting my surgery soon. I can’t wait to feel better!@@kristirichards2249
High calcium with normal PTH is a problem. I don’t think internal medica one drs are taught this - scary, considering they are the ones who run the standard tests. It’s also important to adjust the range the lab gives for your age as the range includes levels for kids through adults. I hope you find answers soon. Please continue to pursue the high calcium! It can cause a lot of problems as time goes on.
@@kristirichards2249 How are things now? Going to have to have the surgery soon, so just wondering how it went?
Newly diagnosed. PTH is 549
My calcium is elevated at 2.7
Parathyroid goes up and down 2 readings at above seven ,others high Normal range
I have fatigue aches , insomnia anxiety
Each note on blood tests says consider hyperparathyroidism ?
I fee like i am being ignored 😢
I know my body and i just do not feel rite
Mine is at 13.2. & hard to go done. Will have surgery soon.
Mine is at 13.2. & hard to go down. Will have surgery soon.
@@delsielopez3073 it doesn't go down on its own ,good luck with the surgery
An endocrinologist appointment is needed, they should order a CT scan for proper assessment.
I feel so bad. Waiting for test to confirm. Horrible disease
Sleep insomnia after parathyroidectomy 😮
Yes had surgery last week and have had three hours sleep in four days up to now. Endo says this will ease when the calcium levels settle down 😮
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My ionized calcium blood levels keeps coming back high. My calcium and vitamin D levels are almost non existent. I think this has been going on for years. I have severe scoliosis with most of my back fused with rods. I have osteoarthritis, osteoporosis, and bone pain. I'm starting to think that I have hyperparathyroidism?
Can hyperparathyroidism cause severe scoliosis and kyphosis?
Yes
What are your numbers? Calcium and pth? Bone pain is one of the top 2 symptoms. If you are over 10.0 in calcium, and you are over 40, it’s a most definite yes.
Get a PTH and Nuclear Iodine Study of Parathyroid not just Thyroid
My calcium was 10 and PTH 96. The consultant said it was my age 😡.
I have chronic arm pains , pins and needles that wake me up, I was sent for carpal tunnel surgery and the surgeon said "this is not carpal tunnel" go back to your doctor. Bone pain in my right arm is evil😢
Get another opinion. I had pain in my arms that would wake me up at night. Yes evil. The surgery was easy. I am already feeling much better.
How is the only way to correct, is sergury?
Wtf, why is the gland OVER ACTIVE????????
There is a tumor on one or more of the parathyroid glands. Had mine removed 3 days ago. Already feeling much better. Easy operation.
Does having parathyroid disease cause good teeth to break off in your mouth?
my teeth never came though they said it was me all my life it was no calcium in my teeth lucky that was all my bones are healthy far as i last checked no processed food fizzy drinks drink as much as i can hot water do not like cold
If you are having bone loss from the disease, then you will have more bone loss in your teeth. It’s called brittle bone disease. Teeth are bone. Do you know your pth and calcium levels?
Yes
Mine hurt so bad I can see thru them