next step?

I have had regular bloods done due to hypothyroidism.

My free T4 was low with high TSH. As my thyroxine doses raised as did my free T4, which at the moment is within range on 75mcg (I am asymptomatic apart from the odd headache). However my TSH is still high and hasn't reduced with the increase in thyroxine.

I don't particularly want them to keep increasing the dose as it seems unnecessary just to switch off the pituitary.

What is the likelihood they will keep increasing the thyroxine dose or when will they stop increasing it? what else may they do to find the problem as to why my pituitary isn't turning off?

What could be the problem based on peoples experience :)

24 Replies

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  • Can you post the actual numbers please... what were your last TSH and FT4 results on the 75mcg?

    If you feel well on the 75mcg, then your doctor shouldn't push you to take more. If TSH is faulty for you, then the FT4 should be the guide for dosing. If FT4 is high in the range, and you feel well, then you're probably on the right dose. You and your doctor need to be working together on this. :)

  • I don't see how actual numbers make a difference when the pattern of results are coming back in a regular pattern however, I am very new to this so just getting my head around it lol My most recent results were free T4 14 and TSH 6.2 (don't recall my last lot prior to those). This is when he put me onto 75mcg from 50mcg. Though I was fine in myself. and no other tests were done, just these two.

    I am due my next tests next month (3month mark) :)

  • Hi

    We really need the ranges to go with the tests - T4 in particular can have very different ranges. Thanks

    Louise

    x

  • sorry, to clarify, the T4 14 and TSH 6.2 was when I was on 50mcg. I won't know the results after being on 75mcg until next month :)

  • I do not know the ranges, I was never given them and as it was new to me I didn't think to ask about them as I had no idea how important they would be.

    Doesn't the fact the T4 has raised as intended, but the TSH hasn't reduced as it should make it any easier?

    I've had hundreds of tests, but only 3 since being prescribed thyroxine. My 4th is due next month. However it is pointless explaining all this if there is no one able to answer the question without figures I can't provide.

  • You could be high in a T4 range of 8-16 or low in one of 10-22. It really does matter. :-)

    You can ask for a print out of your test results:

    thyroiduk.org.uk/tuk/NHS_In...

    Louise

    x

  • The tsh won't necessarily come down as fast as the free t4 goes up...... you might need to be on T4 for a while before the tsh comes down.... say, 3 months of a new dosage. A normal Tsh is 1 and a tsh of more than 4 puts you at extra risk of heart problems according to the society for endocrinolgy press release of april 2010.

    There is a genetic defect which has recently been discoverd, which affects the feedback loop and makes the pituary put out the wrong amount of tsh.... so far it has only been found in men..... it's gene IGSF1

    sciencedaily.com/releases/2...

    but if men are affected then there is no reason to suspect that something similar could not affect women..... it's just not been found yet. It does rather make a mockery of the TSH test though!

    G

  • Do you you have a link to that endo society press release please Galathea? My husband is being investigated for a heart problem and in the meantime they're refusing to increase his pitifully low dose of thyroxine. His TSH is 4.

    Thanks

    Sue

  • endocrinology.org/press/pre...

    4 th paragraph down.

  • Thank you - that's really good ammunition.

    S

  • Hi, What about a Free T3 test. Normally if TSH is raised it is a strong indication that T3 treatment is also needed. Years ago FT3 was always tested, ( costs ) and it was considered vital, I and my endo still think so ..You need to know TSH T4 and Free T3 results with ranges to get a real picture. Originally my hypo ( bad ) was all down to very low FT3.

    You can get a private test through TUK bloods but make sure a well known ( to docs ) Lab . I use Blue Horizon.

    Jackie

  • I have read what I put and it does sound like I'm being snotty lol that wasn't the intention.

    I do know I had 6months between my first dose of 25mcg before I had a test, then it went up to 50mcg, there was a 3months wait for another test when I got the results I have shown, and was increased to 75mcg.

    My next test is due next month (3months after the last).

    So..

    25mcg (no results given to me)

    6months gap then blood test

    50mcg dose (no results given to me)

    3month gap then blood tests

    75mcg dose (these results are the one I have)

    3month gap for next test.

    All my tests are via my GP, no referral has been made to an endo, however after a collapse and many cardiac symptoms I was referred to a cardiologist who has since asked that I be referred to an endo.

    Despite these symptoms my GP still increased my meds, incidentally my cardiac symptoms have stopped but I do still get what feels like I've had the fright of my life completely randomly, and when under emotional stress I seem to have an exaggerated response to it.

    All I wanted to know is when they take tests further or do you have to badger them.

    Thank you all for the responses:)

  • Your GP should be testing you anything from 4-8weeks after a dose change. (My GP happily tests after 4 weeks, and if I recall correctly, that's stated on one or more levothyroxine PILs too) Three months is too long to keep your body waiting if it's not getting the correct amount of thyroid hormone.

    incidentally my cardiac symptoms have stopped but I do still get what feels like I've had the fright of my life completely randomly, and when under emotional stress I seem to have an exaggerated response to it.

    This is typical of symptoms of too little thyroid hormone. Many of us have been there, and if it is thyroid related, it probably won't go away until you have reached the optimum dose for you, and been on that for a while :(

    The aim of treatment with levothyroxine is to increase the dose until symptoms are alleviated, and for many this doesn't happen until TSH is around two or below, and FT4 near the top end of the reference range.

    If I were you, I'd go back and request that you be re-tested now, rather than wait until three months have passed. I doubt 75mcg is enough thyroxine for you, given the results after 50mcg. Most people end up on at least 100mcg.

  • BTW you will probably always have to specifically ask for your test result numbers and accompanying reference ranges each time you are tested. Unfortunately doctors and their receptionists are still not giving this info out automatically. You can ask for the details of previous tests. it's worthwhile keeping a note of them all. you never know when you might need to refer back to them.

  • I will certainly be asking for them when I next go back! lol

  • Oh the receptionist (yup those all knowing beings) told me I had to wait 6 months after my first one, hence why it took so long the first time round. Needless to say she got a boll******.

    The symptoms that I had that caused me to be referred to the cardiologist stopped when I started the thyroxine on 50mcg. I would have these symptoms completely randomly.

    The "exaggerated" responses I get are purely when under emotional stress (whether imagined or actual), not at any other time. I do find that these are often more enhanced when I am premenstrual. This sometimes causes me to be faint.

    Anyhow back onto the subject, my gp increased my dose in his words "to try bring down your TSH". Surely increasing the thyroxine to bring down the tsh would cause hyperthyroidism? or doesn't it work like that??

    My sleep pattern is better and I sleep more normal hours, waking refreshed. In fact I don't feel like I have any of the symptoms I had before being on meds. I had to stop my smoking cessasion tabs as I did a 13hour shift on 45mins sleep due to insomnia and was getting a max of 2hours per night...this is soooooooooo not me haha

    Will he keep upping the levo if the tsh doesn't drop? do I have to have a full blown beard before he realises that I am actually symptom free on a lower dose?

    it drives me nuts lol

  • I spoke to A gp this morning (not mine) and I got my previous results.

    I was told they were positive for thyroid antibodies (no values given)

    april 2012 - tsh 6.5... ft4 11

    aug 2012 - tsh 9.1...ft4 12

    nov 2012 - tsh 6.2...ft4 14

    Does this help interpret things? Also after being symptom free I've had a couple of days where previous symptoms seem to have reared their ugly heads :(

  • As you probably know, a positive thyroid antibody test means your hypothyroidism is of the autoimmune variety (also sometimes referred to as Hashimotos).

    For someone on thyroid hormone replacement, those results do not look good. TSH is above the range, and FT4 near the bottom (although that's still my guessing as you've not given the ranges for the lab that did these tests). The goal of treatment for hypothyroidism is to at least bring the TSH into range, which usually would happen when FT4 is increased by taking a high enough dose of levothyroxine.

    However, if you feel well, then you may be happy to stick with the dose you're on. If you begin to notice more symptoms, it would be wise to go back and request a dose increase. Remember that the effects of too little thyroid hormone can be very subtle and creep in slowly, so that you don't realise how unwell you are becoming. Hence the word 'insidious' is frequently used for this condition.

  • Thank you for that. I was feeling very well and felt that things were going ok, but the other day out of the blue I had two bouts of feeling hypo, headaches, sweating and sleepiness which prompted me to see my gp (I tend not to bother with minor ailments but I felt shocking).

    I had another set of bloods done and I get the results tomorrow.

    I will post those results to see how they relate to the others :)

  • Ok results back and they are now and I asked for the lab ranges.

    tsh 2.1 (0.55-4.78)

    Ft4 14 (9-23)

    Now I'm confused as to why I had this onset of symptoms if everything is moving in the right direction :/

  • In the early stages of dose titration, test results and symptoms don't always correlate at exactly the same time. Based on my own experience, I'm not at all surprised at what you've reported about feeling more symptoms despite numbers suggesting otherwise. Many, many other members here will have been through (or are going through) a very similar scenario too. :)

    Yes, TSH is coming down, which is implying that you are going in the right direction with achieving the appropriate level of thyroid hormone that your body needs. But FT4 is still low in the range. Most commonly, when on replacement hormone, FT4 needs to be towards the top end. Around middle or below is when almost all of us will feel ghastly.

    So, with the FT4 range that you've quoted, you might need yours to come in at around 20+ before you would be feeling some real improvement. And then, even once on a sensible dose, it takes time for your body and brain to catch up and repair all the damage that's accumulated both prior to diagnosis and whilst dose is being titrated. Just like the way a broken leg takes weeks to heal but only seconds or minutes to break.

    It takes a long time for things to become stable, both in terms of the dose you take and the symptoms you experience, and this will vary from one individual to another. Thyroid hormone balancing is not an exact science, no matter what the average non-expert GP, and many so-called expert endocrinologists might try to tell you.

    In those who have only an *underactive thyroid* i.e. they still have some thyroid function of their own and no antibodies, it can be quicker and more straightforward to reach an optimum dose, because they still have part of their own thyroid production and control mechanism going on to help regulate things.

    But for most of us with the autoimmune variety, it's not nearly as easy. Hence the need for patient support groups such as this one. We, the patients are, more often than not, truly the best judges of how we feel and what dose and type of medication works best for us as an individual :)

    In case you are not aware, time of day that the test is done, together with proximity to taking your last dose of medication are both very important.

    TSH is at it's highest in the early hours of the morning. So ideally, testing should be done as early as possible in the morning. I usually aim for when my phlebotomy dept opens their doors at 8am :)

    You also ideally would leave at least 12 hours, preferably 24hours between your last dose of thyroxine and the blood draw. This is because, when on permanent replacement hormone, you need to see how your body is coping when things are at their lowest point. Taking a blood reading too soon after taking thyroid medication won't impact the TSH result much, if at all, but does give a falsely elevated FT4 result, which can lead to the conclusion that dose is either adequate or too high, when in real life it isn't.

    So if you take your thyroxine in the morning, wait until after the test is done to take your dose on that day. Or if you take your dose at night, you can either skip the dose and take it after the blood draw the next morning, or take it as usual but try to leave 12 hours before the blood draw.

    Whatever you choose to do in terms of timing the test and taking the medication, consistency is very important. Try to stick to the same routine each time you are tested so that you can make more accurate comparisons.

  • That makes a lot of sense. however all my bloods have been done at varying times of day and I have almost always had my tablets.

    When I got these results there was "no further action to be taken" on the notes.

  • Yes, as far as the GP is concerned, he/she has achieved their aim... to bring TSH into range. So they see no reason to do anything else. Typically at this point they consider they have your thyroid problem 'under control' and you would go onto once a year monitoring.

    However, just because it says 'no further action' doesn't mean you have to 'put up and shut up' :) If your GP cares about your wellbeing, then he/she will want you to go back if things are still not right. So, if you've now been on the same dose for more than six weeks, you would be fully justified in asking to 'trial' an increased dose to 'see if it helps to alleviate the returning symptoms'.

    Your GP should have no reason to refuse such a request. There is still room for manoeuvre with the TSH as it's not yet at the bottom of it's range (which is when over-medication can become a concern). Also, as FT4 is still so low, that too is a good indication that you are not yet on the right dose given that symptoms still exist.

    A good GP will be happy for you to trial an increase. But many don't understand how thyroid replacement works in real life (after all, they're not experts) and can be reluctant to let you tweak your dose to find your own particular 'sweet spot'.

    There's an inexpensive little book published by the BMA available from many pharmacies called 'Understanding Thyroid Disorders' by Dr Anthony Toft (an eminent endocrinologist although now retired from NHS). It's a useful book to have to hand if you need to discuss a thyroxine dose increase with a reluctant GP. Here's a quote that illustrates why I'm saying this:

    ---

    Q. I feel better when I am taking a higher dose of thyroxine than recommended by my doctor. Is this safe?

    A. There is considerable debate about the correct dose of thyroxine. The consensus is that enough should be given to ensure that levels of T4 in the blood are at the upper limit of normal or slightly elevated and those of TSH at the lower limit of normal, or in some patients undetectable.

    ----

    The above is on page 94 in my copy, but page number may have changed in a more recent version. Showing it to a reluctant GP can help to alleviate their own fears about over-prescribing.

    Here's an Amazon link so that you can see the book amzn.to/zQ7dVm

    Remember that you can always drop the dose back down if it did prove to be a wrong move.

    Or you could choose to wait it out for a while longer to see how things settle. Only you can be the judge of how you feel and how long you can tolerate suffering before trying an increased dose.

  • The main symptom that used to bother me was the fatigue, sleeping 10-12hours every night but now I am tired (though not as much as before) but it's the headaches. I never had those before and this is what's bothering me, 3 days of it, and I'm not the sort to ever have headaches, even when stressed.

    I'm going to ring tomorrow for a consultation.

    Thank you for your time :)

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