TSH changes

[Hammyfish1]

Hello, I was wondering if anyone could shed any light on what’s happening with my Graves’ disease. I was diagnosed in January, saw endo in October and at the time my TSH was coming up, 0.03 in September ( 0.3- 5.6) , had previously been undetectable. October 0.21 and now it has become less than 0.005 in December. I have reduced carbimazole from 15 mg in August and am now down to 3.75 mg. My FT4 is now 11.4 ( 6.3- 14) , it had been around about 8 in September and October. My question is why has my TSH now become undetectable again? My FT4 is at optimum and I feel good, should I be worried that my TSH has gone down because endo said that we will discuss coming off carbimazole in February a nd I’m worried that they might just ignore the TSH. My GP has now washed their hands of me.

[PurpleNails Administrator]

This is similar to me. I have hyper nodule not Graves but my TSH hasn’t made it into range, I was diagnosed 2 years ago. It rose very slightly when my FT4 & 3 were very low but as soon as either FT4 or 3 began to rise the TSH drops.

Management should be based on thyroid levels and not TSH which isn’t reliable. Usually the TSH lags behind and once thyroid had suffered dysfunction the feed back mechanism controlling this can become disrupted. Search ‘HPT axis’ (Hypothalamic-Pituitary-Thyroid).

[Hammyfish1 in reply to PurpleNails]

Thanks for that, it does make as my FT4 has risen and my TSH dropped following that. I reduced my carbimazole from 5 mg to 3.75 mg because I felt unwell when my FT4 was 8. I actually feel fine now. I was worried that something else was causing it.

[Lora7again]

It can take months for your TSH to rise and in some people it never does. Mine is lowish at 0.38 but my T4 and and T3 are in range. I feel very well at the moment and I am taking nothing. When my TSH was 0.80 my T4 and T3 were too low and I felt dreadful. I asked Elaine Moore about it and she said some Graves' sufferers can become hypothyroid for a while and need to take Levothyroxine so I did and I am now in my second remission. I hope this one lasts longer than 4 years this time. Just to add I don't involve my GP in my thyroid health because they haven't got a clue. I also walked out on my Endocrinologist about 10 years ago when they offered me counseling for feeling so ill so I have gone rogue because I don't trust doctors now. You can read my story on my profile page if you are interested.

Have you seen Elaine Moore's site? if not here is a link to it.

elaine-moore.com/

[Hammyfish1 in reply to Lora7again]

I agree, I’ve had to adjust my medication because my FT 4 was too low in the range and now it’s up in the range I feel better but TSH has dropped. I didn’t connect the two but I understand now. Thanks.

[pennyannie]

Hello Hammyfish

The TSH in Graves patients is known to be an unreliable measure of anything as we can have Graves antibodies attached to the receptors distorting this reading.

The most important number is where your T3 result sits in the range - too high a level and you may experience symptoms of hyperactivity and conversely too low a level and you may experience symptoms of hypothyroidism.

[Hammyfish1]

Thanks pennyannie , I didn’t know about the antibody receptors.