Thyroid antibody test

Hi Everyone.

I have been trying to get some answers to why I have been feeling so bad but without much success!

Nearly 3 months and lots of blood tests later, I am still not really any the wiser.

I have these results but I also requested a thyroid antibody test. I had to have blood taken twice as , apparently, the first time they did the wrong tests! Having had the second lot of tests done, I had the following results back.

T4 11.4. (9.0 - 24).

TSH 2.51 (0.2 - 4.5

Vit D 71

B12. 466 (180 - 910)

Folate. 8.8

Ferritin. 47 (15 - 200)

But still no thyroid antibody test. I phoned the surgery to ask about it and the receptionist said she would ask the doctor and get back to me. Last Wednesday the receptionist phoned me and said she had asked the doctor, the doctor had looked at the results and everything was (and I quote) "tickety boo." Pleased to finally have a result, I thanked the receptionist and asked if I could come to the surgery to have a printed copy of the results. She suddenly sounded very panicked and said she couldn't do that as it's not accessible from her computer so she would have to leave a message for the doctor. Could I phone back a week later? I did this but when I phoned yesterday, I spoke to a different receptionist and she didn't seem to know anything about it!! Anyway I went in to the surgery today to go through the whole story again with a third receptionist. Apparently they have sent me a letter (and she printed me another copy of the letter while I was there) saying that they didn't do the antibody test because I didn't need it. So why did the receptionist phone me to tell me the results were fine? As I was speaking to the receptionist, my doctor came out and also told me that I didn't need the test. I tried to tell her that actually the test was irrelevant - I had been lied to, told that the test had been done and everything was fine. Surely this can't be right?

My questions are: What can I do about this and is it correct that if my thyroid function test is 'normal' there is no point doing an antibody test?

Sorry for the rant.

Any advice gratefully received

14 Replies

  • I can only empathise with you - I am with you in your frustration and to let you know you are not alone - rant away God knows I need to at times too x

  • chickenmitch,

    Unfortunately the medical profession don't recognize the havoc that Hashimotos can bring to our bodies. There is no doubt in my mind that an unmanaged auto immune disease will intensify any symptoms and falsify thyroid hormone test results making it impossible to ever get well. If you are feeling problematic it is imperative that your antibodies are tested.

    Is there another doctor in your practice who may show abit more compassion and understanding?

  • What symptoms do you have ?

    because your t4 level is rather low and your tsh higher than we might like

  • Perhaps your GP does not realise that Hashimotos is the most common thyroid condition in the world. They have little or no idea about auto-immune issues and how to resolve them - so they are inclined to run away and say the anti-bodies are not relevant. Sadly they are. Am thinking on the positive side - that as your Vitamin results are quite good that you my not have Hashimotos. Always good to rule it out though.

    Your Ferritin is low and needs to be around 80/90. Although your B12 is not too low - I do think you would benefit from supplementing as you may feel better when it is near the top of the range. You can only utilise around 20% of the result in the blood at a cellular level where it is needed. Your VitD also needs to be higher if in nmol/L - see chart below....

    Divide your D result by 2.5 to brings it to 28 in ng/L - so taking around 3000 IU's daily would improve things.

  • Thank you all for your replies. Reallyfedup123 the symptoms I first presented to the doctor were: tiredness, aching all over, my hair has fallen out, itchy flaky scalp (which has now spread to my arms) and 'brain fog'. I didn't actually know these were symptoms of thyroid problems when I told her, but she said it sounded like it could be and she ran some tests. I already have Coeliac Disease, an autoimmune disease, which is why I am keen to have an antibody test, if nothing else other than to rule it out. It took 9 years to diagnose my Coeliac Disease and the thought of another 9 years feeling awful just fills me with dread. My Coeliac Disease is under control now by the way so I know my symptoms aren't from that.

  • Maybe when you increase your VitD levels - things will improve.

  • Your doctors should know very well that coeliac and hashimotos are heavily linked.

    your symptoms scream hashimotos hypothyroid just as your tests do

    i have a hashis husband ,daughter and 4 grandaughters who are all hashis

    one grandaughter was coeliac from birth too.

    in your shoes i would simply self treat but first you need to get your iron and vitamin status up to scratch

    its very sad that doctors do not open their eyes and look at the patient ,their symptoms along with their blood tests

  • Strange, sounds like you have the same surgery as me!? I went through the same thing in January. I did eventually see the consultant Endo on Wednesday to be told there is nothing wrong with me. All the results I have is TSH 3.9 (0.1-4.5) the other blurb I got from my surgery means nothing. The Endo did eventually agree to do my Thyroxine level which I think I am hoping he means maybe T4. Gosh its all new to me and with Brain Fog is difficult to understand. All I know is that 7 years on I am still unclear what my Antibodies test shows and even if I have had one. Wish I had the money to go private.

    Good Luck with your search for help. x

  • hi i too had that same problem when i asked my last gp for the antibodies test he gave me a dirty look said i didnt need anything else as blood test came back in range. he even refered me to a mental health team. i had also been taken off levo by another gp at same practice. i registered with a new practice but before transfer was completed i had a thyroid storm. when i finally got to see a new gp she offered to do the antibodies test which comfirmed i had hashis. is there anyway you could get a second opinion such as in a walk in clinic or another gp at the surgery?

  • Hi all, I've had both antibodies tests done in the hospital, as I had been sent there as an emergency by the GP and the tests confirmed Graves' disease, so hyperthyroidism. When my endo checked the results he went 'wow, they did both antibodies tests? the hospital might be going bankrupt because of that as one of them is extremely expensive...'... So it just seems to be a question a cost, and nothing else. Maybe if you can keep at it you will get it done.

  • That's interesting Danutza. After my conversation at the surgery last night, I left it that the receptionist is going to contact the lab on Monday to see if the test was done and the result just not sent back (unlikely I would imagine) or if the lab just didn't do the test. The doctor apparently requested it so maybe the lab didn't do it because of cost. Do you think that's possible? I wouldn't have thought the lab was able to make that decision, I would have thought it was up to the doctor but I have no idea how it works

  • You can pay for your own antibody tests with a private tester, and I think that's worth doing. The reason the NHS is reluctant is just that the cost of testing everyone for everything would break the bank. Sometimes that's very unfair. But, for example, if I had a child with ADHD I would pay privately to test for serum ferritin - the research doesn't show that's necessary, but for me as a mother if there's a one in a hundred chance of finding a test result which helps him, that would be worth a shot. It wouldn't be justifiable for the taxpayer. But for me it would be a better use of money than buying him a new phone.

    The fact that you had celiac disease, which is an autoimmune disease, and that you have low serum ferritin, which suggests possible continued absorption problems, and the link between hypothyroidism and celiac - I would just pay for the private tests for antibodies and then confront the GP with the evidence, if the tests come true.

  • Your results are sure as heck not Tickety Boo in our opinion

    Your Free t4 is at bottom of the range where it should be nearer the top and your TSH is 2.5 when it should be nearer 1

    You are most likely in Hashimotos Hypothyroid and by denying you thyroid Antibodies they are not helping you

  • Thank you reallyfedup123. I certainly don't feel Tickety Boo at the moment but I don't think I stand a chance of them agreeing to any further tests. What is really annoying is that they have repeated tests that didn't need repeating and if you add up the cost of those it would probably pay for the one that I really want/need. SO frustrating!!

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