Muscle Twitching

[luvanurse777]

I am in the process of getting diagnosed with hyperparathyroidism- I am getting a second opinion from a thyroidologist but my appointment is not till Dec. 11th. I have muscle twitching everyday somedays are worse than others. When my muscle twitching is bad I get worried about my calcium levels -- my question is -- will I be ok to hold out till Dec. 11 or should I seek more medical attentnion now. My last lab values were within normal limits PTH 42.7 calcium 9.8 before that they were PTH 45 calcium 11.0-- I also have demineralization in my hip bones -- I have had kidney stones in past shown via a cat scan- my aunt has had hyperparathyroidism -- thank you for your time

[TamraW]

Many people with hyperparathyroidism have low Vitamin D. This will definitely cause the muscles to twitch. The body lowers the D as a defense, since the body absorbs less calcium this way.

If people with hyperparathryoidism take the vitamin D pills to raise their levels, they also raise their already elevated calcium levels, so be advised. It is typical for people with hyperparathryoidism to go from high to normal calcium day to day. The only  medical solution for parathyroid disease is to get the bad parathyroid removed, so if you look for other medical attention, it would be to find another surgeon. If your BP is very high, and you have severe kidney pain, then I'd advise going to a surgeon who can help you sooner.

Have you seen the surgeon at www.parathryoid.com? I don't know if his office can get to you faster. They usually reserve their top spots for people in the 12s.  

I had originally suspected I had parathyroid disease because my D was an 18, my PTH was 67 and 71. My calcium ranged between 9.6-10.4. When I spoke with a parathryoid surgeon, he asked for bloodwork, PTH, ionized and serum calcium weekly for three weeks.

It turned out that my serum calcium had elevated a few times, but my ionized was always a steady 9.6. My vitamin D was low, but it was caused by an auto-immune thyroid disease, Hashimoto's. My PTH went back down to a steady 30 and 32 after my D levels were corrected.  

I now wish that my endo would have tested my thyroid levels, not just focused on my parathryoid. It could have saved me months of time wasted barking up the wrong tree.

I'm not saying you don't have parathyroid disease, but just make sure you get the thyroid tests, too (TSH, FT3, FT4, TGab and TPOab).

Hyperparathyriodism symptoms are similar to Hashimoto's.

:) Tamra

[luvanurse777]

Thanks for the info- I feel so frustrated-  Dr. Norman wants to do surgery but I dont feel comfortable -- I would like the second opinion because my endo has told me one thing and the over the phone consultation with Dr. Norman I was told another- so I figured I needed another opinion.

[TamraW]

I consulted with Dr. Norman. He said I was barking up the wrong tree. From my experience, he will not take you unless he is sure you have parathryoid disease.

He is the only surgeon I'd trust to do this operation.

:) Tamra

[luvanurse777]

I talked with my Endo he said that I do have hyperparathyroidism and that if Dr. Norman wants to do surgery on me -- thats between me and Dr. Norman-- that he just wants to follow me for now. Why do Endocrinologist just want to follow you instead of just going ahead and recommending surgery?

[Angie259]

Please give me an update.  You were to get back with me when you spoke with Dr. Norman's office.  If my endo dr. doesn't take some action soon - if Dr. Norman wants to do surgery so be it for me.  I am frustrated as you are. I have waited for 15 months for tests after tests and nothing is happening.  I am one that pth level is always in 150's.  I go back to endo dr. in approximately 3 weeks and I will see if she takes any action.  If not, I am sending  my records to Dr. Norman.  My local surgeon suggested that I deal with Dr. Norman because local surgeon has only done 3 parathyroid surgeries and he wants a dr. to do the surgery who has a lot of experience and so do I.

Angie259

[Angie259]

I forgot to mention to you, but I have noticed in the last 6 months that I have muscle twitching.  I have not paid attention to it, but you are having that problem so now I am wondering if it is related to the calcium.

[luvanurse777]

After Dr. Norman recieves the records they get back to you pritty fast-- although I did have to pay consultation fee. I am looking for a surgeon that my insurance covers and one that has enough experience-- I had neck surgery a yr ago so Im goin to that surgeon for a consult to see how many parathyroidectomies he has done-- then I have to meet with Dr. Lupo a thyroidologist dec. 11th as a secong opinion- I assume I will be having surgery in Jan.  I will keep you posted about everything!!! I would recommend sending your records to Dr.Norman  -- the medical records place from your doctors office would probably fax them--- It does seem that your parathyroid is over active-- have you had calcium levels done? Have you thought about goin to a thyroid specialist like Dr. Lupo in sarasota flrodia?

[Angie259]

Is Dr. Norman's consultation fee $1500 just to check your records even though you may not have him do the surgery?  I have had my thyroid checked previously and it was normal.  My calcium level, in the beginning (over a yr. ago) was 10.6, 10.5, 10.4 and last time it was 9.8, but my pth was 150s. My vitamin D is low so I am taking vitamin D once a week.  I get another blood test done in 2 weeks and go back to my endo at Emory Hospital - Atlanta.  Every dr tells me my calcium is not that elevated.  Depending on my visit to endo, I will then make my decision.  My pth blood test has not been below 146 in 14 months.  My creatnine blood level is also elevated.  Tamra helped me a lot with her answer, but if you do go to Dr. Norman please let me know. Thanks!

[luvanurse777]

my consultation fee was 750 because i live in florida- the only thing I dont like its you dont get to meet them before hand I am only 50 miles away and they said it had to be over the phone consult-- anyhow I will let you know what I decide to do.  Yes the consultation is not refundable.