Hyperparathyroid Disease / Vit. D

[Jlisa]

My Rheumatologist says I have Hyperparathyroid secondary to low Vit. D. I have been taking 1200 iu Vit D for months now with no relief but haven't had a second blood test to see if vit. D is up. This is the second time over the last 5 years that my vit. D has bottomed out that I am aware of.  Symptoms: Full body benign fasticulations getting worse (frequency and strength), bouts of diarrhea, cavities (unusual for me), ductal acytasia, muscle weakness in legs and arms. Plaquinel helps the fatigue. Sent to a neuro and MRI neg. and EMG only slightly positive for diffuse ulnar slowing. I also have had UCTD for many years and I think that is confusing my diagnosis. I read a little about the Hyperparathyroid and wonder if that has been the real culprit all along. Where do I go from here? (Note: I saw an endocrinologist when this first started  -  had gained almost 40 lbs. in a very short period of time which isn't like me - and she said I was fine but didn't run any tests at the time. She gave me advice on diet and exercise.I guess my symptoms were too vague back then).  I am female and in my early 40s.

[brooksy1970]

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 plan 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, 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

[HenryHypo]

Hi Jlisa,
Regarding the Vitamin D levels, 1200 IU might just not be enough. I am on a much higher dose. 1200 IU seems to be the standard therapeutic, remedial starting dose. I am now at 7000 IU as directed by my doctor. Also the Vit.D I take is a thick liquid absorbed sublingually.

I also completely agree with ifupleze about seeing a top quality endocrinologist who specializes in thyroid dysfunction. You should do this right away. I recommend that you don't just go see any endrochrinologist. First check them out on the Web through the eyes of their patients, research their credentials, etc. Beware: Endocrinologists tend to be very by the book and numbers oriented; they might look at a lab value and say you're fine when you are clearly having strong symptoms of an underlying problem. In my case I spent close to 2 years with untreated hypothyroid (not T hormone replacement) because of this. Be assertive: if you are not getting better, or feel that their diagnosis does not make sense and they can't explain it to you clearly, move on to another doc.

Good luck!

[Jlisa]

Thank you for getting back to me. How are you feeling now? Jen

[mladytoy]

I am having a parathyroidectomy next Wednesday.  My symptoms were the same as yours.  I urge you to go to this web site and read up.  Then run from the doctors you have been seeing, and find a reputable endocrinologist in the best hospital in your area.  My internist made my diagnosis, and if she could figure it out and specialists you have seen have not, then it is time to find new doctors.  Hope this helps and you are feeling better soon!

http://www.parathyroid.com

[Jlisa]

I will ask for a referral to a good Endo. and will travel, if necessary.  We only have one in town and that was the lady who didn't do a single test and gave me a speech on diet and exercise. I have to credit my Rheumo. for even thinking to test for hyperparathyroidism and vitamin D level. He is really a very brilliant man and I have a lot of faith in him. I am sure he'll find a good Endo for me out of the area. We live in a small town but are only three to four hours away from a few big cities. Thank you for suggesting I have my adrenals tested, too. I wrote that one down.  

[ifupleze]

I don't know the answer to that, but I am on Vit D3 and have felt better on it.  I am only on 5 mgs a day.  Maybe you are getting too much.  I still suggest going to an endo or someone who specializes in the thyroid, ie., thyroidologist, internest. You might have a good rheum. but he is not a specialist in endocrinology.  Also, I have to repeat, please have your adrenals tested, too.  Good luck.

[Jlisa]

Thank you for your insight. I will pursue this with my Rheum. at my next appointment in mid-January. Couldn't get in any sooner. I am sure he'll want to run another blood test to see if my Vit. D is where it should be as he thinks that is what is causing the Hyperparathyroid problem. Maybe I need higher doses of Vit. D. Have to wonder what came first the chicken or the egg. Is the loss of Vit D causing the parathyroid to malfunction or is the parathyroid malfunction causing the Vitamin D deficiency??????????

[Thypatient]

I had hyperparathyroidism.  A blood test revealed the problem and surgery was the only cure.  I had some of the symptoms you describe.

Mine was looked at as an urgent situation, as can become dangerous.  So I'm surprised your rheumatologist didn't act on yours by referring you to a specialist.

I agree with above, you should be pursuing this situation and hurry!

[ifupleze]

If your endo didn't run any tests, get a new endo.  You might have adrenal fatigue along with a thyroid problem.  Without blood tests, how could they know?  I have no idea of some of the things you are talking about, ie., benign fasticulations, ductal acytasia or UCTD, but  I do know you should be seeing a GOOD endo and hurry!