# Graves disease TSH not getting back to normal on PTU



## Joymommy (Sep 4, 2010)

Hi there,

I've had hyperthyroidism for a while. It started postpartum almost 2 years ago. At first we thought it was postpartum thyroiditis but I went to a different doc and they decided it was most likely Graves. (My mom had Graves as well) It was unusual that my T4 without any treatment gradually improved. It started at 4.5 or so and got down to 2.5 at least without any medication. I was trying to wait it out and do some healthful things first. Then I got pregnant and miscarried and things seemed to be worse so I finally decided to go on PTU back in Jan. I've been on it since - 100 mg 3x/day. In July I was tested and my T4 was normal but not my T3 and still undetectable TSH. My doc at the time recommended I go off my meds and see if I've attained remission which didn't make sense to me since my TSH was undetectable. So I saw another doc in the clinic and he agreed with me and had me tested the end of Aug. and also had the T3 tested since he thought my T3 may have still been high. He just sent a letter and said the T3 & T4 are both in the normal range but the TSH is still undetectable and thinks I may never be able to attain remission. Does anyone have any experience with this? With what I've read is that the TSH is always the last thing to normalize and that it can take 6 weeks + to reflect the changes that the T4/T3 have made. I've only been on medication a little over 7 months so I think I could still keep taking the PTU a while longer to see if the TSH gets back to normal and still try for remission. Anyone have any experiences with their TSH taking a while to normalize but still attaining remission? Thanks.

Melanie


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## Lovlkn (Dec 20, 2009)

Your TSH is being suppressed by stimulating antibodies. 5 years post op I still have no TSH and my labs are mid to just below mid range.

Another thing you mention is the doc said your T-4 and T-3 are in range - get the actual copies of the lab results so you know where 'in range" you are.

You should have a TSI before going off anti thyroid meds - 0 TSI means you are in remission.

You should give anti thyroid meds as long as it takes to reach remission - 18 months minimum - I don't know where that 18 months came from but I have heard that alot. I tried for 5 years and finally gave up and had a TT.

If you have normal liver tests there is no problem remaining on ATD's if you are stable on them.


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## Andros (Aug 26, 2009)

Joymommy said:


> Hi there,
> 
> I've had hyperthyroidism for a while. It started postpartum almost 2 years ago. At first we thought it was postpartum thyroiditis but I went to a different doc and they decided it was most likely Graves. (My mom had Graves as well) It was unusual that my T4 without any treatment gradually improved. It started at 4.5 or so and got down to 2.5 at least without any medication. I was trying to wait it out and do some healthful things first. Then I got pregnant and miscarried and things seemed to be worse so I finally decided to go on PTU back in Jan. I've been on it since - 100 mg 3x/day. In July I was tested and my T4 was normal but not my T3 and still undetectable TSH. My doc at the time recommended I go off my meds and see if I've attained remission which didn't make sense to me since my TSH was undetectable. So I saw another doc in the clinic and he agreed with me and had me tested the end of Aug. and also had the T3 tested since he thought my T3 may have still been high. He just sent a letter and said the T3 & T4 are both in the normal range but the TSH is still undetectable and thinks I may never be able to attain remission. Does anyone have any experience with this? With what I've read is that the TSH is always the last thing to normalize and that it can take 6 weeks + to reflect the changes that the T4/T3 have made. I've only been on medication a little over 7 months so I think I could still keep taking the PTU a while longer to see if the TSH gets back to normal and still try for remission. Anyone have any experiences with their TSH taking a while to normalize but still attaining remission? Thanks.
> 
> Melanie


Hi there, Melanie!! You have been through it w/this. What did your mom do re her Graves'?

To my knowledge, I don't know anyone who has gone into permanent remission on antithyroid meds. Temporary, yes. But after a given amount of time sans the antithyroid meds, it creeps up on you again. That is what I have observed.

I got tired of fooling around w/ it and also fooling around with my life. I have no regrets that I had my thyroid nuked. I feel very well every day of my life w/ very very few exceptions and that usually is not thyroid related.


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## Joymommy (Sep 4, 2010)

Thanks for the responses. My mom had Graves and took ATD's and was in remission 15 years. Took ATD's again and has been in remission since. I think she was on drugs less than a year each time. So, it's always been my hope to have a similar outcome. But we'll see...


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