TSH 0.01: Hi I had RAI last Oct and saw my endo... - Thyroid UK

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TSH 0.01

Joyliz profile image
7 Replies

Hi

I had RAI last Oct and saw my endo a few weeks ago. She said it was a success except my TSH was 0.01 ( .35-3.50) and wanted me to reduce my levothyroxine from 125 daily to 125/100.

I have done so and now 8 weeks later went for a blood test. I saw my GP and the TSH is still 0.01, he left my levo at 125/100.

However I`ve been getting a foggy head, dizziness and muscle pains and wondered if this low TSH could be the cause?

My T4 is 18 ( 8-21) but I don`t have the T3 result.

Thank you I would really appreciate any thoughts on this.

Joyliz

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HIFL profile image
HIFL

The graphic on this post seems to explain your situation: tiredthyroid.com/blog/2014/...

If you have Graves' disease, your lack of TSH could be a reflection of the Graves' antibodies, not your dose. Some Graves' patients take next to nothing after RAI (25 mcg) and still have no TSH, because RAI doesn't eliminate the antibodies.

If you felt better on your old dose, I would ask if you could return to that dose. Or get T3 tested and see if they would prescribe a small dose of that in addition to your T4.

Joyliz profile image
Joyliz in reply to HIFL

Thank you for your reply HIFL I have been getting sore eyes again since I lowered the dose, could this indicate I need the higher 125 mcg daily?

Joyliz

HIFL profile image
HIFL in reply to Joyliz

I'm not a doctor, but if it were me, and my eyes felt better on the higher dose, I would want the higher dose! You should definitely mention that symptom to your doctor.

Joyliz profile image
Joyliz

Thank you HIFL

shaws profile image
shawsAdministrator

When I was on levothyroxine and TSH was around 0.01 not one doctor/endo adjusted my dose. Some of us feel much better with a low or suppressed TSH.

Joyliz profile image
Joyliz

Thanks shaws for your reply, I think I`ll go back to 125 and see how I feel again. Is it ok to keep changing the dose like this?

Joyliz

Glynisrose profile image
Glynisrose

Many people feel better with a suppressed TSH. This could easily be that TSH is a PITUITARY hormone NOT a thyroid hormone. My TSH was suppressed and my endo just has to put up with it because I refuse to have my meds reduced!! I am quite capable raising or reducing myself thank you!!

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