Test results all over the place again. help!

Had hypothyroidism for some 8 years, had all the ususal issues you all complain about and changed doctors twice , although known each has ever referred me. on levothyroxine for only 2-3 years and better but not brilliant. Tsh level finally down to 2.38mU/L in June but now suddenly shot up to 8.49. Never seems to test my T3 or T4. His explaination was pituatary was not recognising amount of thyroxine in blood but this wasn't a problem as long as I felt fine. Have elevated liver function issue suddenly too and so has asked me to stop drinking for 3 months too. Tinnitus really bad at the moment, having trouble sleeping some nights and just in the last week had really stiff neck and shoulders too. help I am really stuck, would love to know what I should do.

18 Replies

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  • What dosage of levothyroxine are you on? Do you take any supplements? Do you have any blood test results you can share with us?

    A TSH of 8.49 says to me that your pituitary is recognising the amount of thyroid hormone in your blood with no difficulty whatsoever, and it is screaming at the doctor - give me more! I can imagine you must feel awful.

  • Oh, and another thing. Even a TSH level of 2.38 is too high for the vast majority of people with hypothyroidism, and you needed an increase even then.

    The fluctuations in your TSH suggest you may have autoimmune hypothyroidism. Have you ever been told this? Have you had thyroid antibodies measured?

  • No. I only ever get TSH level checked and it's only now I've got a free t4 level of 15.6 pool/l with these recent results. No don't think I've had antibodies checked. I will double check other results. Very confused at the moment.

  • Do you have reference ranges for your results? 15.6 pmol/L could be barely mid-range or even high in range depending on the reference range.

  • The results say (12-22) after the figures. Is this reference range ?

  • Yes, that is the reference range. Your FT4 level of 15.6 pmol/L is 36% of the way through the reference range, so it is well below the middle of the range.

    For most people on levothyroxine the level of FT4 which makes people feel well would be in the top quarter of the range i.e. between 19.5 and 22 pmol/L. (There are always exceptions, so don't take this as 100% gospel truth.)

    With high TSH and fairly poor levels of FT4 you have plenty of leeway to allow for an increase in your levo dose.

    However, if you can't tolerate extra levo, then it suggests something else is wrong. The list of what could be wrong is a long one, and I'll just mention the most obvious things that should be checked :

    1) Insufficient levels of ferritin, vitamin B12, vitamin D, and folate. These all need to be tested, and supplemented where necessary. Your doctor ought to do these for you if you ask. I say "ought to". I don't know if he/she will though.

    2) Adrenal problems - if you produce too much or too little cortisol and/or DHEA then your body won't be able to deal with thyroid hormones. You may produce too much adrenaline or feel hyper when you try to raise your level of Levo, despite being undertreated.

    3) You may be unable to convert T4 into T3. Improving vitamins, minerals and adrenal output may help with T3 production, and conversion from T4 to T3.

    4) There are some people who can't convert T4 to T3 very well whatever they do to their vits, mins and adrenal output. You really need to get a FT3 level. Getting your doctor to do this can be very difficult, if not impossible. Doctors often say that T3 levels are irrelevant, because they know nothing about the thyroid, and how thyroid hormones are used in the body. If your FT3 levels are low whatever you do, then you will have to take a different form of thyroid medication, either NDT which contains T4 and some T3, or T3 only.

    Work on one thing at a time. Start with your vitamins and minerals. Once they are tested and being supplemented as appropriate, move on to looking at adrenal output.

    Oh, and I forgot to mention - if adrenal output is low, there are adrenal supplements that can be taken that often help.

  • I take 100g of levothyroxine daily and have tried to increase this to 125g per day but when I do this I find I can't sleep. So have tried alternative days. Have tried only taking extra at the weekend. I have tried taking112g but still get a sleeping problem. I need to get better at taking my vitamins as I have seen dr Peatfield who put me on lots of things and they do help abit. My tinnitus has got really loud too, so beginning to feel I'm crashing again. I will look up June results and post . Thanks sooo much.

  • Welcome to the forum, Louisesymons.

    Several things could be going on here. Undermedication, malabsorption or pituitary dysfunction. TSH rises in primary hypothyroidism because FT4 and FT3 are low. If your GP only tests TSH I don't understand why he assumes pituitary dysfunction instead of undermedication or malabsorption. Ideally FT4 and FT3 will be tested to check levels and dose increased if they are low.

    Malabsorption is a common reason for TSH level rising. Levothyroxine binds with proteins in food, drink, medication and supplements. For maximum absorption Levothyroxine should be taken with water on an empty stomach one hour before, or two hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from iron, calcium, vitamin D and oestrogen.

    If you observe the above, your GP should order a coeliac screen to rule out gluten intolerance which is a common cause of malabsorption.

    If your GP suspects you have pituitary dysfunction because TSH is not responding to good FT4 and FT3 levels he should check your pituitary function and if anything is amiss you should be referred to endocrinology as other hormones may be deficient.

    ______________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • My ft4 was then checked and is at 15.6pmol/l (12-22). My doctor says this is saying I've got lots of thyroxine in the blood but my pituitary is not recognising my levels. He has not suggested we do anything as he asked how I felt and apart from tinnitus which has suddenly got bad and if I out up my levothyroxine to 125g I get periods of sleeplessness. He's says I either put up with sleeping poorly or tinnitus. Very confused.

  • Louisesymons, FT4 15.6 is mid range and not necessarily enough to guarantee good T3 levels. It's low T3 which causes hypothyroid symptoms. You might find it worthwhile to order a private thyroid test to include FT3 from Blue Horizon or Genova via thyroiduk.org.uk/tuk/testin...

    Tinnitus is often worse when undermedicated. Have you tried 100/125mcg alternate days?

    ____________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Yes I did at the start but might try again. What I don't understand is my doctors explanation is it must be my pituatary gland because my blood has plenty as my t4 is fine. He hasn't wanted to check anything else just sent me home. My cholesterol levels are also raised.

  • Louisesymons, TSH rises in response to low thyroid hormone levels. FT4 15.6 isn't bad but if FT3 is low that will cause a rise in TSH. Cholesterol and liver enzymes rise when undermedicated.

    It's worth trying 100/125 alternate days. If you have trouble sleeping try 100/100/125 for a couple of weeks and increase when you can.

    ____________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • I have taken your advise and paid for a private testing kit from one of the providers on the site. I will do this this week and getting a better idea of my t3. I also notice my cholesterol is high and higher than the previous tests. I think my levels are too low and this has caused an increase in cholesterol which in turn is affecting my liver. I am also trying your suggestion of 125/100/100. So today have taken 125. Making sure I leave an hour before eating or drinking anything else in the morning. Many thanks for your help and will keep you in touch.

  • If you get a print-out of your latest blood test results, with the ranges, and post (on a new post if you don't have them today) for comments.

    The fact that your TSH has shot up means you're not on sufficient levo and maybe it would be kind if your GP added some T3 to your T4. 8.49 for a TSH is high for someone taking levothyroxine and would seem to show that your dose is far too low. Has your doctor taken a blood test for antibodies and if so what were they?

  • I have got it my full bloods but I don't know what I'm looking at. My doctor hasn't done anymore since the results last week and sent me away for 3 months, saying stop drinking and come back as he is worried about my liver function. That is all he's said. Should I now start to kick and scream ( just literally) or change doctors again as he seems to be getting fed up with me. he did ask how I felt but apart from the bad tinnutus and feeling slightly low I'm fine. I think I might be crashing again but at the early stages as I seem to have more brain fog and struggling to retrieve the right words sometimes.

  • I think the blood tests you've put above are the latest? Clutter has given good responses as she's excellent at interpreting results.

    Personally I would be tempted to add a little T3 to your dose as an increase in levo gives you more symtpoms and see if that helps you. Your doctor doesn't know very much either. It might mean sourcing your own T3.

  • How do I source T3? I am going to wait and get private bloods done and then go from there. I feel T3 will be low and so I might need to get some and what are the issues with it? I notice Dr Peatfield suggested I might be low of T3 several years ago although I had t3 tested last year and it was 7.1 (2-8.1) so was fine. What I find most confusing is how after over a year going down slowly suddenly I've rocketed to what is considered a high level of TSH being over 8.

  • Maybe in between the time of your blood test the rise may have been because you really needed a rise in thyroid hormones.They usually on do TSH and maybe T4 (not always T4 and rarely do T3) so if your TSH has been near the top of the range the GP might not have bothered as many aren't aware that to feel best a TSH of around 1 is needed or lower.

    Louise -re T3 - put up another post headed T3 and ask for private message to be sent to you if anyone knows a reliable source.

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