Antibodies but no HypoThyroidism

Hi, I have just been to the doctors to try and get my medication upped from 25 mcg as i'm still having symptoms, only they are worse than before, only to be told that i don't have it only the antibodies, which will eventually develop into an underactive thyroid. I'm confused!! I was put on the Levo because i stated my symptoms so i can't understand why they can't raise it. He has ordered full blood tests on everything else, liver, vitamins, etc but not Thyroid, and he has also referred me to an Endocrinologist to see what he says. I feel like i'm being a hypochondriac, anyone been in a similar situation. Thank you :( xx

13 Replies

  • I think this is not unusual. Doctors seem a bit confused about thyroid problems. You may end up considering self medication as many on this site do.

  • Thanks eeng, you are probably right. That is my thought and my next step as this is the third doctor i have seen. x

  • It isn't at all unusual for someone to feel worse on a low dose of Levothyroxine such as you are taking. If your thyroid is struggling a bit and you take some extra hormone, your thyroid thinks it's an opportunity to take a bit of a break, and you could paradoxically end up more hypo than you were.

    If you are going to see an endo, I believe the admins of this site have a list of doctors who actually seem to know about thyroid issues, rather than the average endo, who is really good at diabetes but knows not a lot about thyroid. I'm not sure whether the list is of private endos, NHS or both, but is by area, so you might be able to ask to be referred to someone good.

    Out of interest what was your latest TSH result?

  • I haven't had one done since September last year, and that was 2.9 from 4.9 in June. I'm going to get private blood tests done in the next couple of weeks so i can see for myself what is going on. I have a list of the optimal values to compare it to. I can also find out if the anitbodies have to do with possible Hasimotos. To tell you the truth i'm not sure whether i will bother going to see the Endo as i feel that i will get the same response. I am going to ask my doctor for the antibody levels next time i see him, never thought to today x

  • email for a copy of Dr Toft's Pulse Online article. In it you will see his recommendation that if there are antibodies, you should be treated. Highlight this part and take to your GP or put it through the surgery's letter box for his attention.

    Dr Toft was President of the British Thyroid Association before he retired.

    Good luck. If doctor refuses you will have to source your own levothyroxine.

  • Thank you I will certainly look into that now xx

  • Some more links for you but maybe tick the page with your symptoms for GP.

    If you have thyroid antibodies you have an Autoimmune Thyroid Disease called Hashimoto's.

  • Thank you, its a big help xx

  • HadEnoughHypo,

    I had elevated thyroid peroxidase antibodies and unequivocally normal thyroid levels which is known as euthyroid Hashimoto's. I was desperately unwell with mainly hyper symptoms at first but eventually rapidly swung between hyper and hypo. My GP and thyroid surgeon told me symptoms were non-thyroidal because I wasn't hypothyroid and having antibodies don't make you experience the symptoms I had. They were plain wrong. 9 months later I had a thyroidectomy to remove thyroid cancer. The symptoms I had been experiencing resolved almost immediately.

    There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies and will slow progression to hypothyroidism.

  • Thank you, very interesting. I don't know a lot about Hashis, theres a lot of information to get your head around, especially in our current state, lol. BUt i think i'm getting there slowly. xx

  • HadEnoughHypo,

    Sadly, our doctors don't seem to know much about it either.

  • I was diagnosed with Hashimotos in Crete back in 2005. All the TFT's were in range but the anti-bodies were high. I started on 25mcg - later increased which didn't suit and I wasn't converting T4 into T3. Now T3 only.

  • Hopefully the endocrinologist will have more insight into your problem and increase your dose. Good luck. It's hard being patient when just not feeling right.

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