Does anyone have experience with hyperparathyroidism?

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    • Does anyone have experience with hyperparathyroidism?

      Also known as parathyroid disease....
      My sister just learned that she has primary hyperparathyroidism.....a very rare disease that causes tumor growth. According to what I've read tonight, the symptoms of this problem would account for the bizzare behavior she's been exhibiting for the last year or so.....and it's serious!

      It's diagnosed based on two tests......high calcium levels (in the USA the norm is 8.5 to 10.5) and parathyroid (PTH) level (norm is 14.0 to 72.0). Her calcium level is 12.7 and her PTH is 285.6!!!! She found lab results from 2 1/2 years ago that show her calcium then was already 11.6! Her doctor completely dropped the ball, in not following up on this!

      From what i've read, she's in danger of stroke at this point! She needs immediate surgery and there are few doctors in the US who even perform it.

      I'm still searching for info on the net, but with all the wisdom here at POH, I thought it was worth asking here.....

      It also would be a good idea for people to keep an eye on their calcium and parathyroid levels, when they have other blood work done. Just because a condition is rare, doesn't mean it's not something to be concerned about....

      I'm also wondering if there could be a genetic factor.....
      I can't believe her doctor missed this for over 2 years!
    • Re: Does anyone have experience with hyperparathyroidism?

      No experience, sorry. Just wanted to let you know that my thoughts are with you and I hope you find some answers for your sister soon.
      As least it explains her bizarre behaviour, that's a teensy bit of good news.

      Some doctors really make my blood boil :mad:

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    • Re: Does anyone have experience with hyperparathyroidism?

      thanks, Sheri.....sounds like she is as relieved as I am, to learn there is a reason for her behaviour.....but how scary is this!!! She even had the gastric banding surgery less than a year ago, but because her calcium was not over 12.0 yet, no one paid attention to it. there is no excuse!

      this is a quote from parathyroid.com :

      "If your doctor tells you "your calcium is not that high, let's wait and see what happens", then find a new doctor. This is the most common mistake we see made by doctors and endocrinologists--they tell the patient that their calcium of 10.9 cannot be the cause of their depression, fatigue, and blood pressure. This is not true."

      thanks for your good wishes, friend :)
    • Re: Does anyone have experience with hyperparathyroidism?

      That is just awful. WTF is wrong with doctors these days? There are so many people suffering needlessly because of being misdiagnosed or not diagnosed at all.

      Go in to see them with something simple though and they can't wait to ram pills down your throat. I think a lot of them have a lot to answer for. :mad:

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      "The most important person to be honest with is yourself"