Campaign for different blood test for patients with no thyroid gland?

Having just came back from an Endo appointment with most of my vital readings 'just' within reference range, do you think we should push for a 'Non-thyroid specific blood test'?

Firstly, it would help those who do not know they can go deficient in certain minerals when they have their thyroid removed.

Secondly, it will avoid several trips to the Endo as we all know they play the guessing game of 'until you actually say it to me, I wont be forthcoming' :D A separate framework blood test will flag up that certain readings should be in the higher ranges.

Thirdly, it will help to improve the health of other patients by ruling out deficiencies before treating other unrelated symptoms.

What do you guys think? I can organise an on line petition if you wish?

24 Replies

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  • Yes, I agree. I should love to know how the first reference ranges were compiled. Did they include a large proportion of people with no thyroid.? I think not. I am convinced that our treatment should be different too. Roll out the petition please!

  • I shall organise and report back ;)

  • This is a link and Dr Derry, with the same views on treatment/diagnosis of thyroid gland problem made a statement. Needless to say he was eventually struck off by the Canadian Medical Profession as he was using the same method as Dr S and Dr P for diagnosing and treating patients.

    thyroid.about.com/od/thyroi...

    Needless to say, you will see a comment by Dr A.P. Weetman, the one I believe who was 'awarded' for his ?(cannot think of a word) but this is a couple of excerpts:-

    thyroid.about.com/od/newsco...

    novonordiskfonden.dk/en/con...

    Many of us on here asked the same question as Thyroidabout.

  • Hi shaws, I can't see the Dr Derry link

  • Thanks I have put it in now.

  • & very interesting it is too :-)

  • Excellent resources! 'What is normal'should be identified before we move on. The fibro in my elbows has come on within 2 years of my op, no one seems to be able to help. Its a case of 'just keep taking the pills as I'm very,very busy'

  • the problem would be the different tests that would need to be done [ specific ] because as a medical idiot I can only presume that ALL tests have to be carried out individually , and no one will carry out unnessessary tests that may not be needed ----- this is the main problem that many of us already have to put up with --- I feel that what we need to champion is ' if any of the basic tests [ and they need to be resolved as to exactly what are BASIC tests actually are ] show ANY KIND OF ABNORMALLITY then further specific tests for that area i.e foliate ,b.12,various vits etc. the tests could then be specific ----- so as not to confuse the endo/gp/doctor that is TRYING TO READ AND TREAT the results [ if they do not actually understand them ........and then each area can then be either treated correctly or refered to a specialist in in that particular field ........ sorry for the long reply but this is with some thought ........alan xx

  • Alan, I'm not asking for individual tests to be done ,I'm asking for the whole lower range to be increased for people without a thyroid. Ive spent the best part of two years going backwards and forwards to my Endo and been treated with a very generalised perception of my symptoms. Even though Ive explained my Fibro elbows to both my GP and Endo, nothing is being done to treat. My Hypo symptoms are written off as 'being within range' even though they're at the very bottom of a 'normal persons' range. To me ,I'm not being 'treated' rather a set of 'tick boxes' are being for-filled with no actual insight or investigation into the symptoms that are being presented. Therefore, if it is a 'tick box' culture within the NHS, then the 'tick boxes' need to be reevaluated upwards to account for a patient that has no thyroid ,and by that very token, the patient isn't comparable to 'normal' lower ranges. Thanks for the reply!

  • the main problem with ' blood tests ' when talking about THYROID CONDITIONS is that ALL tests do actually work with each other and HAVE to be carried out at the same time to give a correct interpretation of the results ....because all tests [ most of which are not carried out ---possibly because of cost -- ] the patient === us === can never be treated to the optimum level until ALL the test results are gathered and then ALL EFFECTTED ORGANS etc. are then given the correct medication[s] and not as happens now ' generally hit and miss for ????? long .........this could all be alleviated by carrying out the FULL blood tests in the first place as these would show any other problem so that that can then be treated and resolved to the optimum effect for everyone ......alan

  • p.s. with regard to the ranges this can ONLY be done or indeed applied if ALL RANGES ARE COMPATIBLE -----therefore all labs use only one set of figures to work by ===== which none actually do ............WHO DECIDES THE RANGES FROM LAB TO LAB [ maybe different equipment manufacturers decides the ranges -- 1 answer already given ] .....alan x

  • I'm surgically hypothyroid but I don't think I'm disadvantaged more than someone who has a poorly functioning thyroid. At least I don't have the pesky gland sputtering in and out of life skewing medication and blood tests.

    I would simply like medical professionals to stop treating the TSH and treat the symptoms, including deficient and low in range vitamins and minerals.

    Are ferritin, vitD, B12 & folate issues particular to 'roidies? Or do they occur in anyone whose health is below par, for whatever reason?

  • You only have to nose about on other HU communities to see frequent mention of irons VitD & B12 - however we do seem to mention them more frequently here! (personally I think numerous medications contribute to low levels too).

    A member a while ago said "All TSH does is stimulate the thyroid. It has no other purpose. It does not turn into anything else or affect any other gland. It's absence is not harmful." I await studies which say different. J :D

  • Yes, TSH simply reflects T4 is detected or required but not whether it is converting to T3.

  • I dont agree. I think the medics are not treating the TSH. If it had not been for the TSH test I would never have been investigated and diagnosed with hashimos. I had no symptoms in the beginning although my TSH was at the high end of the range. By the time symptoms kicked in about 1 year to 18 months later i was informed by my GP that for some people a high TSH was normal for "them" and as long as T4 was in range that was all that counted.

    Another GP read my notes and by chance noted my previous TSH results and luckily he was not of the opinion a high TSH was irrelevant. Its now 4 1/2 years later. I was referred to Endo etc but this has been ongoing for 7 years with me. I am now 3 stone heavier, I have to dress for the apple shape and before I was the column and I have all the symptoms of underactive.

    People keep going on about the irrelevant TSH test and many in the medical profession are refusing to treat the TSH if it is high and this view is not being undertaken for the benefit of the patient. My T4 and T3 have always been in the range it's the TSH that wasn't.

  • on the knowledge [ limited ] that I have learnt in the past 2 years from this site as well as other areas ....my understanding is thus tsh is by its very definition THYROID STIMULATING HORMONE and does NOT give indications or results of t3/t4/follate/ferretin/b12/ or any other area ------IT IS A GENERALISED TEST FOR THYROID HORMONE ONLY ------ which is why a persons tsh can be within 'normal' range but, their conversion of that hormone to t4 & and t4 CAN be restricted ---- which will then promote other conditions of ill health ...... alan

  • Both high and low TSH are relevant - but not necessarily of thyroid hormone levels being inappropriate for the person. So as soon as a high or low TSH is identified, further testing is required in order to identify why - which can include pituitary issues as well as thyroid problems.

    A high-within-range TSH seems to be quite common in people with both T4 and T3 in range. However, that is because the T4 and T3 results are within the broad population ranges, but probably not because they were within the patient-specific T4 and T3 ranges. Assuming that your pituitary is working as the textbooks suggest, that high TSH was indicating that your T4/T3 were indeed low for you.

    This is also a reason that TSH can be a poor test choice for screening purposes. Certainly it will pick up people who have a thyroid disorder AND whose TSH is reacting in the textbook manner. It is very likely to fail if the pituitary is simply unable to produce enough TSH to appear raised. There is a growing literature on things like autoimmune pituitary disease which might lead to this. Nor will it work when the pituitary produces too much TSH.

    There are also several ways in which other things can interfere with TSH tests.

    My belief is that a doctor doing only a TSH test and then, on that evidence alone, declaring someone either to have, or not to have, a thyroid disorder is inappropriate.

    An obvious example would be someone with high TSH because of a pituitary tumour being given thyroid hormone. They are probably already hyperthyroid due to the excess TSH being produced.

    Rod

  • Whats happening now is that a lot of the medical profession are ignoring the TSH results. As long as T4 in range that's acceptable.

    I have just had a partial thyroidectomy in December and was told to go to local surgery for thyroid blood tests. I happened ask the nurse once the blood had been drawn "what are you testing?" sharp intake of breath "TSH" I explained to her she should test T4 and T3 She agreed to put T4 down as well but refused T3 which I knew she would. Results came back TSH 27.5 it should be 5 and T4 is two notches from being out of range.

    GP telephoned me to inform me "You will be glad to know your T4 is in range" when I asked about TSH I was told "Oh that's 27.5 but it's the T4 we go on". I am one of the lucky ones GP is not in charge of my care.

    Point I am trying to make its all relevant it all paints a picture In an ideal world TSH should be tested routinely with T4 and T3 plus vitamins. To say that they should stop treating the TSH I don't believe they are any more.

  • My doctor certainly is! Or rather, he isn't treating it, cos it's 'in range'

  • that's exactly my point , I , and many others , fully believe that ALL tests should be carried out as the 'NORM' when any irregularity is shown i.e. in the above post ' tsh should be 5 but is actually 27.5 ' which shows that there is something that needs to be addressed [ maybe in another area ] but this has an effect on the treatment , wellbeing and health of the patient ...........with regard to your ' in range ' tests what tests? were done ....what is the 'range ' and far more important can anybody explain to me in simple language what is NORMAL when everyone is separate from each other and needs to be treated as a separate entity for optimal care results ......alan

  • They did TSH & as that was less than 5 I was brushed off as normal. But my antibodies are 25 times over range! But of course I had to pay to find that out!

  • that is my entire point harry , why should YOU have to pay privately for tests that your doctor should have arrainged -- presuming that your health warranted them otherwise you wouldn't have ordered or done them ---your doctor actually gets paid to keep YOU in good,reasonably health to the best of their ability ..... and this was not done until YOU carried out the test[s] at your cost that he/she should have carried out and then to act on the results ........alan x

  • And I await my first ever set of private blood test results, for first time ever I'm having what you lot mention all time vit d, ferritin, b12 etc after years n years of ill health and getting nowhere, enough is enough ! Paid for blood tests! My body l know it's not right! Never mind some doc looking at numbers!! My body I know it! X

  • Just to clarify, I was referring to vitamins and not TSH or any other thyroid hormones. And also it was for people who are surgically Hypo, that's people with no thyroid gland at all.

    Vitamins D,B12,Calcium and ferratin all deplete when using thyroxine in some patients. So, as a rule ,the lower range of vitamin parameters should be shoved up as if, like me, you're just within the lower limit ,it wont be beneficial to you in the long run as with, say Calcium, you also run the risk of Osteoporosis if you're on thyroxine. So obviously a deficiency needs to be corrected the opposite way to combat bone degeneration as you're not a normal patient.

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