Not clinically indicated

A couple of weeks ago, the receptionist from my surgery told me that my thyroid antibody test had come back and everything was fine. When I asked for a printout of the results, she mumbled about having to ask the doctor. To cut a long story short, they couldn't print out the test results because the test hadn't actually been done. I questioned the doctor over this and apparently the test was requested but the lab didn't do it as it was 'not clinically indicated'. Does the lab make this decision or do they just do the tests that a doctor has requested? After being lied to so blatantly last week, the little bit of faith I had in them has completely evaporated and I no longer know if they are fobbing me off or not. Can anyone help?

25 Replies

  • Yes it does seem that in the UK they do not test antibodies when the TSH is in range - absolute madness. Hashimotos is the most common thyroid condition and needs to be eliminated. Maybe it is too costly so they ignore it.

    Any chance of having your tests done privately. Don't get mad - get even :-)

  • It really does depend on the area. Some areas will test nothing but TSH unless the TSH is abnormal. This is dangerous as someone could have a pituitary issue that isn't uncovered by the TSH test alone. I'm quite lucky. They test TSH and t4 in my area but only test t3 if both TSH and t4 are abnormal. Sometimes the doctor can persuade the lab to test t3 in other cases but it often isn't easy. It is all to do with cost effectiveness and nothing to do with clinical need. After all, it is up to the doctor, not the lab who have never met you, to decide whether there is a clinical need.

    I think your GP needs to get assertive with the lab and tell them in his opinion there is a clinical need. He needs to know whether your antibodies are high so he knows how best to treat you. Unfortunately the lab could still decline and private tests could be your only option :(

    Carolyn x

  • I probably don't need the test to be honest - it has become more of a principle now!! My TSH and t4 are both ok and all my other results are in range.

    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)

    My symptoms include hair loss, itchy scalp, dry itchy skin on neck chest and forearms, tiredness, aching all over and brain fog. In February I was feeling awful and that was then I started to ask for tests. I do feel better now, although I am still tired and achy. My hair is still thin but my scalp isn't as itchy (although I am using Betnovate Scalp lotion on it). I have Coeliac Disease so I wondered if I might have a thyroid autoimmune condition, or really I just wanted to rule it out. I don't know if this is likely or possible or completely wrong but, it seems, my doctor doesn't seem to know either!!

    I would have a private test but, if it is correct that it is 'not clinically indicated' then obviously I don't want to waste my money. I don't want to have anything else wrong with me but, having waited over 9 years for a diagnosis of Coeliac Disease, I don't want to struggle on for another 9 years or so if there is something wrong that can be treated.

    Sorry for the long ramble but I am a bit confused and don't really know what to do for the best,

  • Your thyroid function is low in range so could be contributing to your symptoms. Although they are in range now they may not be in the future, especially if it is autoimmune thyroid disease.

    Your b12 and folate aren't bad if you aren't supplementing but your ferritin could be a little higher.

    To me, your results look like the early stages of hypothyroidism and it would be a good idea to monitor this. If your symptoms get any worse, go back to your doctor and get retested. Likewise if they don't get any better. Ask that he request antibody tests again next time he tests your thyroid. If your TSH is above range then, they may do the tests.

    I wish I could be more help.

    Carolyn x

  • That is really helpful, thank you Carolyn. The doctor did she she would repeat the thyroid function again in a year so I will just wait and see what happens. Thanks again x

  • If your results next time are worse but still in range, you may be able to persuade her to try you on thyroxine on the basis that your thyroid function is getting worse and is likely to continue doing so.

    Please don't leave it as long as a year if your symptoms don't get any better or start to get worse. Also it is best to test first thing in the morning. TSH is higher then and gives a better indication of your actual thyroid function.

  • That's really useful information. Thank you so much x

  • Hi, sorry, but i disagree there. Any TSH over 2.5 should be investigated further and could very well mean hypo. As your FT4 is at the bottom of the range, your Ft3 and antibodies should be tested. Plus the fact that you felt worse in February, and have hypo symtoms. Antibodies could account for varying levels of hypo. I think the tests are clinically indicated.

    You should up that B12 a bit. It's too low. It should be at least 600 if not higher. Anything Under 500 (where the Japanese range starts) could cause neurological damage. Plus a lot of symptoms.

  • Thanks greygoose - I don't suppose you could give my doctor a call and tell her that, could you?!

  • I would love too! But I Don't think it would help. lol

  • Probably not but would make me feel better :)

  • lol

  • There was a proper double blind study done by l'oreal which investigated ferritin levels and hair loss. It found that the ferrin level needed to maintain hair was 70. The further below 70 you are, the more the hair loss. Here is some info.....

    Xx. G

  • Funny how L'Oreal sell all sorts of fancy hair dyes, relaxers, conditioners, hydraters, volume boosters, and so on. Rather than ferritin, haem iron or even ferrous bisglycinate. Perhaps we're not worth it?

  • Love the "not worth it"

  • Me too!!

  • Oh, but we are'worth it' to the drug companies though.

  • Chickenmitch, the doctor who ordered the antibody test must have instructed the receptionist to tell you that the result was fine. That's an outright lie as the test wasn't done. I'd be furious.

  • I am furious Clutter but I don't really know what to do about it. All the doctor kept saying was that I didn't need the test and she couldn't seem to see why I was so angry at being lied to. I would make a complaint but they will all stick together and I won't get anywhere and to be honest I haven't really got the energy!!

  • Chickenmitch, She can't see that being lied to about the result was the problem, not that the test wasn't done? I despair!

  • No, she kept repeating that it didn't matter because I didn't need the test. I told her that now, that was irrelevant because all I could think of was that someone had phoned me and said that the test result was (and I quote) 'tickety boo' when the test hadn't even been done. And the doctor said, "But you don't need the test"........................................... At that point I gave up and left

  • Chickenmitch, I think a written complaint to the Practice Manager is warranted if you can summon the energy. It might be pointed out to the GP that lying to patients about the status of results on tests that haven't been done is a big no no, irrespective of whether the test SHE ordered is unnecessary because the biochemistry lab declined to do it.

  • I know this isn't the right way to look at it, but it worries me that if I start taking supplements, when I have the tests done again, everything will look better and the doctor will be even less likely to take me seriously!

  • Chickenmitch, Having coeliac disease may have impaired your absorption of vitamins and minerals from food but unless your vit/mins are deficient NHS won't prescribe. Supplementing to boost low levels will usually improve how you feel. Results are supposed to look better after supplementing, no point in supplementing otherwise. If you have fatigue or musculoskeletal pain due to low ferritin and they improve after supplementing iron with vitC why would it stop a GP taking you seriously about other issues?

  • I see what you mean, Clutter and, obviously, I will do what I have to do to make myself feel better but I don't want tests to make everything look as if I am fighting fit if I'm only getting that by using supplements. It might be completely different but, with Coeliac Disease, the only way to feel better is to stop eating gluten but, if you don't eat gluten and have a blood test, it comes back as negative, making it look as if there is no problem. I'm not sure if I have made that clear or just confused the issue further!! I also have arthritis and cervical spondylosis so I don't really know what to attribute my aches and pains to!

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