I have had a high anti nuclear factor of 340, TSH fluctuating between 3.8-5.8, FT4 12.8. I have intermittent joint pain in fingers, hairloss

I have brain fog. I have see two rheumatologists who say my results are boarderline therefore I cannot be treated. I have been given a script for an antimalarial tablet.

I don't feel normal but I am getting no where. Any thoughts?

11 Replies

  • Have you seen an endo specialising in thyroid? Why are rheumatologists deciding what is right for you? Definitely seem hypo with all those symptoms and blood tests show that too, as your T4 may be low. Need reference ranges to be sure. Do you have those? My thoughts are that you should ask your GP for a referral to an endo of your choice and if they will not, then go privately if at all possible. Of course you still need the referral under our crazy system but will be worth it to talk sensibly to someone. Hope you get help soon.

  • the ref range for free T4 is 12-22 so again I am boarderline. I feel so frustrated. I will go back to my GP and ask to see an endocrinologist. Thank you

  • Ps, Why are you taking anti malarial tabs. Have you got malaria or are they just guessing?

  • Apparently there is some evidence it can help with auto immune disease such as rheumatoid arthritis and lupus. I haven't started them yet until I know more about them.

  • I think you are very right not to start them, particularly as it is probably all caused by your urgent need for thyroid medication. Hope you get some sensible answers quickly.

  • Actually they can treat you because you have symptoms and your thyroid problems are likely caused by an autoimmune condition. They do NOT have to follow the RoCP guidelines. They are just that - guidelines. Doctors are allowed to follow whichever guidelines they wish or even to use their judgement.

    I hope you get treatment. I expect it will help with a lot of your symptoms.

    Carolyn x

  • Thank you. It's very frustrating as I know I am not well but he keeps saying that he will make me hyperthyroid if he gives me thyroxine. Is it worth going back to the gp and asking for T3 levels? Perhaps I am not converting?

  • Small doses of thyroxine will not make you hyperthyroid. Anyway, TSH is not the way to know this. TSH was never designed to be used on it's own for diagnosis and certainly not in the way it is currently used. It was also never meant to be used for dosing. The only way to tell if you are hyperthyroid is not the TSH test but the T3 test. If he is that worried about you going hyper, he should try the dose and then test TSH AND t3. If your T3 is within range then you are not hyper unless you are experiencing symptoms.

    There seems to be a dreadful lack of understanding regarding thyroid disease testing, diagnosis and treatment at the moment. There is too much reliance on the almighty TSH test. You may find you need to find a different doctor.

    You could ask for a trial of thyroxine, starting at 25mcg and increasing to 50 and then 75 if necessary. It should be increased until your symptoms improve and your TSH is toward the bottom of the range all the while making sure you don't experience hyper symptoms. If you notice an improvement then clearly that is what you need. Some doctors will allow a trial so it would be worth asking.

    I hope you get the treatment you need!

    Carolyn x

  • Thanks again. I am going back to see a different GP and see about referral to an endo. I am going to also ask for a T 3 test. I need to get well. The difficulty is trying to find a thyroid specialist in South Wales! It's been the most difficult journey this far as I have a sub- clinical presentation even my thyroid antibodies were 35 just outside the 'normal' 34. Is there a supplement I could take in the meantime? I am pretty healthy.

  • Have you been tested for autoimmune thyroiditis? I had T4 levels like you but was started on thyroxine because I had antibodies to my thyroid gland otherwise I think they'd have just left me to suffer. I have had high positive ANA too but the doctors don't do anything about it - I believe it's part of having autoimmune problems.


  • My thyroid antibody test came in at 35 and the upper limit us 34. Because its just outside they have dismissed it. It's clear I have a sub clinical presentation but no one seems to want to treat me. The consultant said if he started me on thyroxine it could cause osteoporosis and cardiac arrhythmia! Surely a low dose would not cause that? I am going to see a different GP next week x

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