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Avatar universal

i still feel terrible

I just wanted to know if I have been told I have primary hyperparathyroidism  how come I should take actonel for 3 months? Will it give me back--me? I just feel sick.
6 Responses
Avatar universal
Really?  Technically, they're not supposed to treat primary hyperparathyroidism with an osteoporosis medication, unless you have osteoporosis.  The fact remains, is, they're  not treating the source of the problem, which is most likely a parathyroid adenoma.  I suggest a second opinion.  Also visit www.parathyroid.com.  This wonderful site has lots and lots of information.  I hope you're able to get some relief!
630475 tn?1222565022
The same thing happened to me. After I was diagnosed with hyperparathyroidism I had to take a bone building powder that you mix with water or juice for 6 months so I could build my bones back up in case they had to remove all of my parathyroid.  I was so scared because it was not fully explained to me and I could find no help. (did not have a computer at the time).  This is what happed and is happening to me with this problem:

About 15 years ago I too had an over active parathyroid.  I ended up with 10-15 stress fractures in both feet, both ankles were broken, Stress fractures in both hips and a stress fracture in my leg.  All my blood work and urine work was borderline hyperparathyroid.  After having a  scan done on my parathyroids it was plain to see that they were very much enlarged.  After having the surgery everything was fine.  Just a slight piece of parathyroid was left in.

Now I am in trouble again!  My blood calicum is high, I feel bad, have problems sleeping, I have high blood pressure that is hard to control and I have two new stress fractures.  My endocrinologist is sending me to a surgeon Monday, even though nothing showes up with a scan.

Don't wait!  Do something now.  You don't want to end up like me with all those broken bones!

Nan
Avatar universal
According to what I have read about having a hyperparathyroid is that there is NO medicine that will help.  The only thing that can be done about a hyperparathyroid is to have it removed.  You won't feel good until you do.  kj
1376367 tn?1319230027
Hello,  I had a high calcium blood level done in the U.S.  I am from Canada and going to Seattle to a clinic for Fibromyalgia.  I have had chronic symptoms that have been somewhat alleviated with this huge regime that I am doing as well as injections 3 times a week.  I am still hypothyroid after many months of treating all the hormones and my TSH is still too high.  I went to the sight to read about parathyroidism and it clearly states that if you have a high calcium reading and then get tested for PTH and it's in the normal range you still have a tumor that needs surgery.  Now my doctor here in Canada tested the calcium and the PTH and of course the results are in normal range, so the lab puts on the form to rule out parathyroidism and because of everything I've read about this I believe it still could be the reason for all my hormonal issues and pain problems as well as toxicity that keeps building in my body.  When the body's metabolism is stunted none of the metabolic systems can function accordingly.  I have been given an Estrogen support to help with metabolizing Estrogen.  How can I get my doctor to see that this needs further investigation irregardless of the blood work that he will get back.  I have seen the test results cause we have a way to see our own when you sign up for viewing you lab results.  What are your thoughts on this as I would like to know.  I am a 54 year old woman that had a hysterectomy this past Jan, 2011 and still struggling with thryroid and other hormones that are not stable.  
Avatar universal
First, have you had any thyroid tests beyond TSH?  If so, please post results and reference ranges shown on the lab report.  Also, are you taking thyroid meds?  If so, what med and what daily dosage?
1376367 tn?1319230027
Yes, I've had many thyroid tests,  here's one from July 15th,  Canadian
TSH    0.5     normal ranges   are    0.38 - 5.5  mU/l
F T4   22.5    normal ranges   are   10.5 -20.0 pmol/L  This one flagged
F T3     4.2    normal ranges   are     3.5 -6.5  pmol/L
With these results my meds were Synthroid 100mcg. and bio-T3 10mcg.

Thyroid Function
TSH A 7.5 0.38-5.5 mU/L                         This test taken Aug. 25, 2011
  This result is compatible with hypo-
thyroidism.                                              Meds were .75mcg Synthroid
                                                              and .15 of Lio-Thyronine
Free T4  15.8 10.5-20.0 pmol/L
Free T3  3.7 3.5-6.5 pmol/L

Now as of Sept. 13, 2011    I had been rechecked and these are the results
TSH             6.94H     (.34- 5.60)   different lab but still out of range
FT3                10        ( 8  - 15 )
Ft4                 3.8       ( 3.0  -6.8)  

My doctor just had me increase my Synthroid up to .88 mcg and I only just started that this past Tuesday morning along with .15mcg. of T3.  

I've had continual fluctuations since I began treatment with this Fibro and Fatigue Clinic in Seattle and I'll see what this new doctor has to say to me tomorrow morning.  Over two years ago I saw an Endo here in Victoria and he only changed my meds to make it simple and found that 100mcg. of Synthroid was the solution on paper, however I felt just terrible and he said I don't know what to do and I was blown off after 3 months with him.  Here I am still not with a balanced thyroid, so suspicion of hyperparathyroidism with my calcium that was high in my lab work in the States could be the cause.  My labs here in Victoria of course showed my calcium was in range along with a normal PTH.  Here's the link which leads me to believe there's something else going on.  

http://parathyroid.com/parathyroid-symptoms.htm

This doctor clearly states that once your calcium is out of range, you can't correct it by ignoring a tumor, yet it's not cancerous.  This apparently screws up all the hormones in the body and you just generally feel poorly.
Let me know what you think.  I'd appreciate some thoughts on this. Thanks
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