Thyroid Removal, Settling In

[Feebee42]

Well I am settling into life without a thyroid here in the UAE, it is a dream to live without pain.

This week, about ten days after the operation, I woke up with a swollen tongue and could barely move my hands - severe muscle issues. Legs were super tingling. So I upped my dosage from 100 to 125 and went to the doc. Basic blood tests were done, which was then about 6-7 hours after the 125 was taken.

T4: 15.8 pmol/L (range 9.0-19.04)

TSH: 0.6 uIU/ml (range 0.35-4.94)

This is the best T4 I have seen in years. BUT .... can anyone tell me whether the time between the 125 dosage and the blood test would have affected the T4 reading? I would assume that it would be quite elevated by that dosage. (FYI, I will get my GP to do blood tests again in 3 months and he will do the full range for me).

The other thing. The higher dosages fixed the tongue in about 48 hours. It has reduced the arm and leg issues but (4 days later) that is not completely gone. I am considering adding another 25 (taking dosage to 150 a day). My other question is, should I wait a while before doing this, or just dive in? And if I do, and it proves to be too high (and I get palpitations etc) it won't be problematic to reduce again, right?

Thanks in advance of your usual fab help. For your laugh of the day, as a reward for helping, my endo told me that there was no science at all to link selenium with the process of converting T4 to T3, whilst waving an old copy of the 'Oxford Book of Endocrinology and Diabetes' in my face. Bless his heart.

Fi x

[Nanaedake]

Have you had calcium and vitamin D levels tested? Did you lose parathyroid glands? Low calcium levels can cause tingling and muscle issues. It can be serious so you should check this out with your consultant/GP, whoever is now responsible for your aftercare.

[Feebee42 in reply to Nanaedake]

I did not know this about calcium (thank you). I am taking calcium supplements and have to do so for a full month until the parathyroid starts operating normally again (apparently).

I will get a full blood test done in a couple of months. The endo just did the basics on that day as an emergency because I was swelling up.

I increased to 150 anyway. Feeling soooo much better.

[Hidden]

You will normally feel OK-ish for a few months without a thyroid gland, then you will likely develop symptoms such as fatigue that will remain permanent and worsen over the years if you remain on levothyroxine alone. Increases or decreases in the dose, timings etc are unlikely to help. If that happens the only solution guaranteed to work is NDT.In your condition I withstood 8 years of misery before dismissing the useless advice of doctors and discovering this fact.