4 ms·

A personal anecdote: recently I came quite close to being diagnosed with CFS or fibromyalgia but luckily found out I have primary hyperparathyroidism. I have no

A personal anecdote: recently I came quite close to being diagnosed with CFS or fibromyalgia but luckily found out I have primary hyperparathyroidism. I have no idea how all the doctors could have missed it, I had to figure it out myself. "Of all the missed diagnoses of ME/CFS and fibromyalgia, primary hyperparathyroidism proves to be one of the most tragic simply as a result of how treatable the condition is relative to the suffering it can cause." https://phoenixrising.me/archives/23988 https://phoenixrising.me/archives/23988

jdhn 8y ago
How did you figure it out, did you look at the results of your blood test and do a self-diagnosis from there?
- ambrop7 8y ago
  I've been trying to diagnose myself for a long time (about a year) before I figured it out. By that time I've been to my doctor multiple times, to two orthopedic doctors, one gastroenterologist, had 3 spine MRIs, gastroscopy, abdominal ultrasound, chest X-ray, a bone scan, lots of lab tests incuding lyme disease, probably other tests and physical therapy. I was to the ER twice where they also had no clue. Someone even advised a psychiatry referral which I did not go for. I got on the right track when I was studying endocrine diseases and happened to include calcium on a panel of blood tests I ordered for myself (presumably because I stumbled upon hyperparathyroidism). Once calcium came back high, it was clear after 2 more blood tests, and the doctors at the Norman Parathyroid Center (where I'm having surgery) confirmed it based on my lab reports. I'm having surgery in 2 days.
  - mildavw 8y ago
    Good luck. Just wanted to chime in that my Dad had similar (albeit milder than yours) issues and ran across the Norman Parathyroid Center website while researching his problems. He had surgery there about 6 weeks ago and indeed they found and removed a dime sized tumor. He has high praise for the docs there. And he’s had an excellent recovery. Energy and alertness has returned full force! Hope your results are similar.
    - ambrop7 8y ago
      Thanks. Indeed I read only praise of this place, and their web site is an excellent source of information. It is now quite certain I have this but until I get the surgery and see the problems resolving I still worry a little bit if we're right :) Supposedly it is rare in young people (I'm 29), maybe that had something to do with nobody seeing this.
  - monotone666 8y ago
    If you have parathyroid issues it could be a boron deficiency.
  - jdhn 8y ago
    Thanks. My story sounds very similar to yours. I had a bunch of tests done including x-rays (negative), MRI (negative), an EMG test (negative), and multiple blood drawings. Eventually it came down to a diagnosis of exclusion, and the neurologist said that I had fibromyalgia despite the fact that my primary symptoms are muscle weakness and cognitive issues, with pain being an annoying but very manageable secondary symptom. At times I've wondered if it's all in my head and I'm just going crazy. Best of luck with the surgery!
  - beef234 8y ago
    Male friend at 35 also had lots of strange symptoms and figured out on his own that it was also hyperparathyroidism. He also went to Norman and sings their praises. He was eating dinner in Tampa the night after his morning surgery! They removed two para tumors. What's odd and probably why it took so long for his diagnosis is that it's usually a disease in older overweight women. He was the only young skinny man they saw all day. He now found out he also has pretty severe apnea (been a pretty loud snorer for years) and isn't sure if it's related or not. The surgery did help but didn't solve everything so found the apnea next and is now on CPAP. Always something! Good luck and feel free to message if you have any questions about the procedure.
    - ambrop7 8y ago
      Thanks. I'm even younger than your friend (29 male)! Never noticed any apnea myself or any problems that would not be explained by this disease, so I'm hoping for complete resolution of all issues. Maybe even my mild tinnitus (constant high-pitched noise, unconcerning) will get better, I guess it could be due to the ossicles getting demineralized :)
      - beef234 8y ago
        He probably had it for over 15 years with high calcium tests every year on his physical. No doctor ever mentioned it as a problem as his health just degraded year after year. He figured it out himself and called Norman. So at least you'll have your 30s to enjoy! Let me know how it goes afterwards. I'd love to hear how you recover!
awalton 8y ago
The differential diagnosis for fatigue is just so vast, it's easy to miss the marginal percent cases like various forms of hyper/hypothyroidism (yes, both can cause fatigue; I was tested for both, among many other tests.) Unless you have a doctor that's fairly dedicated to solving your case, it often just doesn't happen - the patient's have to do a hell of a lot of the work in a lot of these cases. You must be your own advocate to get the doctors to run the right tests, try the right drugs... it's probably the only reason drug advertising is ever legal at all. I live with an autoimmune disease that went undiagnosed for nearly 8 years (I was about 14 when the muscle and joint pain began, some short amount of time after a nasty flu that I personally wasn't sure I'd get through). I had no idea what was wrong but I knew it had to be something, despite what everyone else was trying to tell me. Doctor after doctor would come up with the wrong answer - growing pains ("they'll go away on their own in a few months/years"), shin splints, faking it for drugs (you know, while my mom had to tie her teenage son's shoes because he was physically incapable of bending at the knees through swelling and pain to tie them - eventually switching to flip-flops, even through Kentucky winters), overexertion, various vitamin deficiencies (which they didn't actually test for, just said "take a multivitamin")... Some didn't even bother attempting to come up with a solution, instead just offering opiates or steroids to get rid of me - it was never a surprise to me that there would be an opiate crisis in this country with how I was treated. It wasn't until after I was taking borderline poisonous amounts of naproxen and suffering horrible gastric symptoms that a clinic doctor finally realized that I wasn't faking it, and nobody in all of those years ran even the simplest of blood tests - an Antinuclear Antibody test. It came back off-the-chart positive, all the way through the highest dilution the lab could test (something like a 1:2000 dilution, with a speckled pattern), and that was what it took to be sent on to a rheumatologist and an enormous battery of tests to eventually get the diagnosis and treatment I needed. Autoimmune diseases are rare in men - my particular disease, Mixed Connective Tissue Disease, is often noted as about 16:1 favored towards women. Autoimmune diseases are rare in the population as a whole, and overlap syndromes are the hardest to diagnose. Multiplicatively speaking, the doctors weren't wrong to rule it out at first - my case is somewhere between 0.5-1 in a million. But by failing to do even the simplest blood test for so long, I suffered various forms and levels of agony, needlessly.
- mark13 8y ago

jdhn 8y ago

How did you figure it out, did you look at the results of your blood test and do a self-diagnosis from there?

ambrop7 8y ago
I've been trying to diagnose myself for a long time (about a year) before I figured it out. By that time I've been to my doctor multiple times, to two orthopedic doctors, one gastroenterologist, had 3 spine MRIs, gastroscopy, abdominal ultrasound, chest X-ray, a bone scan, lots of lab tests incuding lyme disease, probably other tests and physical therapy. I was to the ER twice where they also had no clue. Someone even advised a psychiatry referral which I did not go for. I got on the right track when I was studying endocrine diseases and happened to include calcium on a panel of blood tests I ordered for myself (presumably because I stumbled upon hyperparathyroidism). Once calcium came back high, it was clear after 2 more blood tests, and the doctors at the Norman Parathyroid Center (where I'm having surgery) confirmed it based on my lab reports. I'm having surgery in 2 days.
- mildavw 8y ago
  Good luck. Just wanted to chime in that my Dad had similar (albeit milder than yours) issues and ran across the Norman Parathyroid Center website while researching his problems. He had surgery there about 6 weeks ago and indeed they found and removed a dime sized tumor. He has high praise for the docs there. And he’s had an excellent recovery. Energy and alertness has returned full force! Hope your results are similar.
  - ambrop7 8y ago
    Thanks. Indeed I read only praise of this place, and their web site is an excellent source of information. It is now quite certain I have this but until I get the surgery and see the problems resolving I still worry a little bit if we're right :) Supposedly it is rare in young people (I'm 29), maybe that had something to do with nobody seeing this.
- monotone666 8y ago
  If you have parathyroid issues it could be a boron deficiency.
- jdhn 8y ago
  Thanks. My story sounds very similar to yours. I had a bunch of tests done including x-rays (negative), MRI (negative), an EMG test (negative), and multiple blood drawings. Eventually it came down to a diagnosis of exclusion, and the neurologist said that I had fibromyalgia despite the fact that my primary symptoms are muscle weakness and cognitive issues, with pain being an annoying but very manageable secondary symptom. At times I've wondered if it's all in my head and I'm just going crazy. Best of luck with the surgery!
- beef234 8y ago
  Male friend at 35 also had lots of strange symptoms and figured out on his own that it was also hyperparathyroidism. He also went to Norman and sings their praises. He was eating dinner in Tampa the night after his morning surgery! They removed two para tumors. What's odd and probably why it took so long for his diagnosis is that it's usually a disease in older overweight women. He was the only young skinny man they saw all day. He now found out he also has pretty severe apnea (been a pretty loud snorer for years) and isn't sure if it's related or not. The surgery did help but didn't solve everything so found the apnea next and is now on CPAP. Always something! Good luck and feel free to message if you have any questions about the procedure.
  - ambrop7 8y ago
    Thanks. I'm even younger than your friend (29 male)! Never noticed any apnea myself or any problems that would not be explained by this disease, so I'm hoping for complete resolution of all issues. Maybe even my mild tinnitus (constant high-pitched noise, unconcerning) will get better, I guess it could be due to the ossicles getting demineralized :)
    - beef234 8y ago
      He probably had it for over 15 years with high calcium tests every year on his physical. No doctor ever mentioned it as a problem as his health just degraded year after year. He figured it out himself and called Norman. So at least you'll have your 30s to enjoy! Let me know how it goes afterwards. I'd love to hear how you recover!

awalton 8y ago

The differential diagnosis for fatigue is just so vast, it's easy to miss the marginal percent cases like various forms of hyper/hypothyroidism (yes, both can cause fatigue; I was tested for both, among many other tests.) Unless you have a doctor that's fairly dedicated to solving your case, it often just doesn't happen - the patient's have to do a hell of a lot of the work in a lot of these cases. You must be your own advocate to get the doctors to run the right tests, try the right drugs... it's probably the only reason drug advertising is ever legal at all. I live with an autoimmune disease that went undiagnosed for nearly 8 years (I was about 14 when the muscle and joint pain began, some short amount of time after a nasty flu that I personally wasn't sure I'd get through). I had no idea what was wrong but I knew it had to be something, despite what everyone else was trying to tell me. Doctor after doctor would come up with the wrong answer - growing pains ("they'll go away on their own in a few months/years"), shin splints, faking it for drugs (you know, while my mom had to tie her teenage son's shoes because he was physically incapable of bending at the knees through swelling and pain to tie them - eventually switching to flip-flops, even through Kentucky winters), overexertion, various vitamin deficiencies (which they didn't actually test for, just said "take a multivitamin")... Some didn't even bother attempting to come up with a solution, instead just offering opiates or steroids to get rid of me - it was never a surprise to me that there would be an opiate crisis in this country with how I was treated. It wasn't until after I was taking borderline poisonous amounts of naproxen and suffering horrible gastric symptoms that a clinic doctor finally realized that I wasn't faking it, and nobody in all of those years ran even the simplest of blood tests - an Antinuclear Antibody test. It came back off-the-chart positive, all the way through the highest dilution the lab could test (something like a 1:2000 dilution, with a speckled pattern), and that was what it took to be sent on to a rheumatologist and an enormous battery of tests to eventually get the diagnosis and treatment I needed. Autoimmune diseases are rare in men - my particular disease, Mixed Connective Tissue Disease, is often noted as about 16:1 favored towards women. Autoimmune diseases are rare in the population as a whole, and overlap syndromes are the hardest to diagnose. Multiplicatively speaking, the doctors weren't wrong to rule it out at first - my case is somewhere between 0.5-1 in a million. But by failing to do even the simplest blood test for so long, I suffered various forms and levels of agony, needlessly.

mark13 8y ago