Confused about Graves antibodies!

Posted , 4 users are following.

I visited the endo registrar the other day which is a rare thing 😜. I never even got to see the consultant himself! Anyway! My thyroid t4 and t3 are coming down t4 is 14 and t3 is 5 but TSH is still undetectable! I have been told to carry on with 5 mg of carbimazole but I'd like to just take 2.5 mg daily now. Anyone else taking this dose. As I'm slipping into hypo on 5 mg plus I take homeopathy for this too! Plus lemon balm! Also I asked for my antibodies to be measured and the registrar said I never need to have that test again as it doesn't matter if I have 100 or 900 antibodies I still have Graves so they don't measure them again!? Very confused! He also wanted to move my bloods to 3 mths apart and I've now agreed with my Dr that I can keep doing them every 6 weeks as I don't want to slip into complete hypo! Any similar situations would be good to know about. Thanks in advance! 😁

0 likes, 13 replies

Report / Delete

13 Replies

  • Posted

    I don't agree with  your doc on the testing of antibodies.  Mine have been tested as my values improved and before the decision to have me stop taking meds altogether.  I also had a normal FT4 and FT3 on 10 mg of Methimazole but my TSH was less than 0.001 for two years while I was on methimazole 10 mg daily.  Then I added supplements to my treatment regimen and all my lab values, including TSH normalized.  My TSH has gone as high as 2.5 but usually sits around 1.5 although at my last testing it had dropped to 0.79 (still in normal range).  I think that was due to stress in the workplace

    Report / Delete Reply
    • Posted

      Hi Linda, I don't either! I'm going to try the acetyl l carnitine. That's great news about your TSH and yes I agree with stress being a trigger wholeheartedly ??

      Report / Delete Reply
  • Posted

    I am totally confused....I was diagnosed with over active thyroid last year...started off on 30mg carbimazole gradually reduced to 5mg...last week advised by my GP to come off the medication due to mouth ulcers. I'm not sure I understand a lot of the terms mentioned on this site what.does going hypo mean...please forgive my ignorance.

    Report / Delete Reply
  • Posted

    Hi Karmaway, at least in the UK doctors are reluctant to check the TSH receptor antibody level after the initial diagnosis of Graves. I guess they have limited resources and this is a rather expensive test.

    The fact that your TSH is undetectable means that the self-regulating mechanism of your thyroid is still disrupted and it is likely that thyroid stimulating antibodies are still present. It makes more sense to test your antibody level after your T3, T4, and TSH have normalised.

    Btw, before stopping anti-thyroid medication I had the test done privately just to make sure my antibody level was withing normal range.  You can find labs on the internet that will perfom the test and the cost is around 150 quid. 

    I completely agree with you and Linda, this should be a standard test before stopping anti-thyroid medication. Medical literature shows that having a normal antibody level reduces the risk of a relapse. 

    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up