Facial spazms, lip numbnes, muscule pain and more.

[SVETA]

Dear doctor! I am 34 y.o. female 1 year after TT due to thyca. At the present time I taking 112 mcg of Levoxyl. My last week results: TSH 0.03, t4 total 10.7, and thyroglobulin <0.2, thyroglobulin antibodies <20

I am having really bed muscle pains all over my body (it started in legs only 5 month ago), severe knees pains (both legs) and now pins and needles feeling in my lips, face and scalp. I am trying to go to pool to exercise in the water for the last 2 month (3 times a week). I went to many doctors to exclude different illness. Reumo told it does not look like fibromolgia too. He thinks it is from low TSH level.

I personally thing it is from low TSH. I started with 150 mcg Shyntroid right after TT, then 137mcg, then 125 mcg and then 125 mcg. Then my endo changed brands to Levoxyl and decreased to 112 mcg.
So, for the last two month I’m taking 112 mcg of Levoxyl. But My TSH level never increased. It was always (after TT about 0.02-0.03).  It did not change even with smaller dosage of Levoxyl and symptoms I decrypted before just getting worse.
What should I do? Because my all over the body pains and pins and needles feeling in my face are driving me crazy. I am working full time and have a little child to take care of. I know my endo’s next step will be to give me 100 mcg of Levoxyl. But I think I need more dramatic decrease in medication. Please give an idea what should I do.
Thank you for your help, I really appreciate it.

[Mark Lupo, M.D.]

TSH suppression in thyroid cancer is common practice, but sometimes we go overboard.  It is particularly important in high risk patients, so as a 34 yo female, you most likely have Stage I cancer (unless there are metastases outside the neck) so usually the goal TSH once we have proven there is no significant recurrent/persistent disease is 0.2-0.7 (and this is debatable)

Given the normal calcium and otherwise negative evaluation, it makes sense to lower the dose to see if this helps.

[sophiesudane]

Out of curiosity... how are your calcium levels? Does your doc check to make sure your parathyroids are still working? (That is if they left in your parathyroids when you had the TT.) Anyhow,
Just a thought.

[SVETA]

My calcium level is 9.02 which is good. When they did TT doctor told me that he took only one parathyroid out. Thank you very much. Maybe more ideas? By the way I just went to my Endo and he decrease Levoxyl fro 112 mcg to 88 mcg.I'll re-check my TSH in 6 weeks.
Thanks again. Sveta

[normaneon]

I don't know whether this will help you or not, but I had the same thing happen to me after TT for cancer.    I chew 4-6 tums aday for calcium and the pins and needles have gone away.   Hope you get better,  that is a terrriable feeling.
Norma

[azimay]

Have you had your ionized calcium checked?  My total calcium was normal, but ionized was low and causing symptoms - may be worth checking into.
Ari