Help with hyperthyroidism blood test results

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Hi. This is my 3rd time suffering with this disease in the past 7 years. Yet it would appear I'm none the wiser when it comes to understanding blood test results. Regular checks for me are always for TSH & T4. Always ask for these when I phone doctors surgery for my results as I don't like being fobbed off with the "bloods are normal". Have been taking Carbimazole 20mg per day to start but have halved dosage now.

Results for June 2015 - TSH <0.03, T4 38 and for ​Aug 2015 - TSH <0.03, T4 26 (T4 level coming down nicely)

​But I just got results for Oct and she gave me TSH <0.03 (no change there still) but said my free T4 was 4.8. I came off the phone and pondered thinking that was a big drop. Then I thought "hang on she's given me the free T4 not the T4". So I called the surgery back to ask for the T4. (results at my practice are given out by the Receptionist - which I don't actually think is the best method). I said I wanted my T4 result. She checked and said I was not tested for that, but my free thyroxine was 16.  Now I thought that free T4 and free thyroxine were one of the same thing?? Any thoughts on this would be greatly appreciated.

(​Ps - concern made me ask for my Doctor to phone me. Have a telephone appointment for Thursday evening)

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  • Posted

    In North America the routine testing at every visit is TSH, Free T3 and Free T4.  They are all necessary to get a correct picture of how your thyroid is working.  Regular T3 and Regular T4 is of no use following progress.  All are necessary. As well, at diagnosis your antibodies need to be tested for Graves disease - antibodies TSI and TRAb or some docs do TBII instead of TRAb.  They should be tested at least once a year and anytime the doc is going to discontinue the meds.  You do not want to discontinue meds just when you have normal lab tests (this is called being euthyroid), you need your antibody levels to be normal as well before discontinuing the meds or you will have a relapse.  I am on another thyroid board and we always suggest that patients obtain a paper copy of all lab tests and keep their own file on them.
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    • Posted

      Thanks for your response Linda. Here in the UK, although we have the NHS (National Health Service), each area deals with health issues differently. I live in Scotland and how things are worked here will be different to say England or Wales. I do think your advise to get a paper copy of all lab tests is a good idea so I will ask for this when my Dr telephones me on Thursday.
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    • Posted

      Many, if not most, Endocrinologists in the Western world are not saavy in treating Graves disease either and most push to have their patients treated with Radioactive Iodine or thyroid surgery.  Many of us have resisted this and insisted on what we wanted including demanding tests they should be doing as well as taking long term methimazole instead of opting for the most promoted other 2 treatments which most patients complain about after they have been done because the effects are not reversible and many find the replacement levothyroxine does not make them feel normal.The worst patient outcomes are those patients who are passive and give total responsibility to their health care provider to treat their disease without doing any research or without becoming an active partner in their health care.
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  • Posted

    I agree and I'm not sure I know whats going on. I'm not aware my antibodies have ever been tested and am so annoyed with my current endo I'm going to speak to my GP about changing hospitals. I've never been asked about my symptoms, was put on the list for RAI when I have thyroid eye disease and my latest test results have resulted in a reduction in meds but no mention of further blood tests or an appointment. I'm totally disillusioned with this department of the NHS.
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    • Posted

      Hi Sue and thanks for your response. My antibodies were checked when I was first diagnosed in 2008 and they were off the scale hence I was diagnosed with Graves. I just did whatever I was told the first time around as I knew no better. I got treated with Carbimazole for one year then I was euthyroid for about 16 months. However it returned for the 2nd time and I thought I would look into things more and not just go with the RAI that they advised me to do. Again I managed to get back to normal just taking carbimazole for a year. I had gone 4 years clear of symptoms when it returned in June this year with a vengence. I have not been referred to the Endo this time as we got it under control quite quickly but these recent results have thrown me. I will know more when I speak to the Dr on Thursday as I cannot comprehend what the receptionist has told me today.
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  • Posted

    Now then, I think T3 =  triiodothyronine and T4 = thyroxine and these are bound to protiens - when they are bound they are not active, the ones that aren't are the free versions and these are the important ones to keep an eye on. The FT3 does all the stuff that causes the symptoms but you need T4 to convert to T3. The 3 or the 4 relate to the number of iodine atoms. It's a multi system hormone, meaning it affects lots of your body's functions which is why we all get weird seemingly unrelated symptoms - your thyroid is so damn important.

    Your TSH is the messenger that tells the pituary gland how much thyroid hormone is in the system, but it's slower than royal mail, which is why when on meds your other numbers improve before it does.

    I hope this makes sense or is even accurate...I'm a lay person and also being treated for my first bout of hyperthyroidism.

    I'll let the more knowledagble peeps take it from here :-)

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    • Posted

      Thanks for your reponse Elise. My TSH is at the lowest they can record at <0.03 and has not budged since diagnosed in June however my T4 seems to be heading down to the normal range. If I can just get concrete information on what my results were this time I will feel happier. 
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  • Posted

    Hello Jackie:

    My name is Shelly and I am a nurse in the USA.  I suffer with HYPOthyroidism, from Hashimoto's disease.

    However, I know both sides. I will try and explain:

    Normal TSH in USA almost same as UK, is 034-5.60 or in that range. When your TSH is on the low end of the scale for example 0.03 it means you have TOO MUCH  Thyroxine in your system.

    Now TSH Thyroid Stimulating Hormone), is a fairly broad blood level test.  It shows a snapshot of how your "Sensor"  hormone works. It just acts like that. So if you were a car, it would be like when the light comes on and says your tires are low on air.    It does not measure the TRUE health of the gland!

    It is just like a quick idea of what is happening.  So most doctors order in the USA T3, T4 & FT3 and  FT4 tests and if needed TPOA antibodies. 

    Now NHS does not order from what I gather on here (reading the posts), the T3 level.  Why I don't know maybe they are saving a bit of money, which is not good.

    T4 is one of 4 hormones made by the thyroid gland.  There are a T1 and T2 but we will focus on T4 and T3 in this conversation.

    When they measure the level of T3 it shows a number and the true amount being made by the thyroid is FreeT3 (FT3), and that is the amount floating around in your blood that is useable in the body.  Same for T4 and free T4.

    When you are having HYPERthyroid - (Too much thyroxine), you will see a rise in the T4 level  but it can be a bit different for the amount in the FT4.  I know it is confusing!  Sorry.

    So in short, it is BEST to have all T3, T4, FT3 and FT4 and TSH. you can ask them to do it.

    Any questions jsut ask.  I hope it helps.

    Shelly

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