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Confused about Graves antibodies!

Posted , 4 users are following.

Karmaway
Karmaway

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

13 Replies

  • linda187
    linda187 Karmaway

    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

    • Karmaway
      Karmaway linda187

      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 ??

  • beryl38883
    beryl38883 Karmaway

    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.

    • Karmaway
      Karmaway beryl38883

      Posted

      Hi Beryl maybe your levels are within range now that's why the GP said to come off plus the ulcers can be a side effect from the carbimazole. Hypo means hypothyroid as in underactive 😃

    • beryl38883
      beryl38883 Karmaway

      Posted

      Thank you karmaway...still losing my hair tho....have hospital apt beginning of march...
    • beryl38883
      beryl38883 Karmaway

      Posted

      GP told me on my last blood test thyroid was normal?? That was b4 the mouth ulcers....he sent me for another blood test last Friday full blood count waiting for these results
    • beryl38883
      beryl38883 Karmaway

      Posted

      It's good to know thers support & understanding out there👍👍

  • Guest
    Guest Karmaway

    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. 

    • Karmaway
      Karmaway Guest

      Posted

      Wow what great info!! Thanks Dan!! 👌

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