T4 levels normal (12.1) with TSH very elevated (23.2) - docs don't know what to suggest! Can anyone help?

I've had hypothyroidism for approx six years and levels have never been right. Always seem to have had elevated TSH levels with relatively normal T4. I am medicating with 75mg per day and consistently take these each morning.

Bloods taken last week show T4 at 12.1 and TSH at 23.2

Endocrinologist I saw doesn't know what to suggest and is saying not seen results like this before and probably all OK!! Nothing to worry about!!

I do not accept this and they are running thyroid antibody tests now, but refused to talk about/tes T3 levels or anything else when I challenged on this.

Been feeling really rubbish recently and think that there must be something being missed with my results.

Really hoping someone here had had the same blood results as me and hasaid been able to correct these.

Please help me if you can!!

20 Replies

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  • Jma,

    Welcome to our forum and sorry to hear you feel unwell.

    Can you supply blood test ranges ( numbers in brackets) for members to give more informed comments.

  • Hi Radd

    Thank you for your welcome!

    Sorry my most recent results are as below -

    FT4 - 12.1pmol/L (should be in range 9.0 - 25.0)

    TSH - 23.2 mU/L (should be in range 0.5 - 4.5)

    I haven't been able to get a FT3 test and do not have previous test results available at the moment. Trying to get the past 12-18 months of test results from my doctors so can share.

    Thanks

    James

  • James,

    An endo can't say all is ok because he hasn't seen these unusual results before or doesn't know what they mean. You can choose any consultant you wish in any hospital, although I am not sure how easy it is to change once under an endos supposed "care".

    If you had not been medicating for six years I would say you had the onset of hypothyroidism BUT as added thyroid hormones raise, the pituitary gland should respond with less TSH.

    Your Levothyroxine dose is low and your T4 level would easily allow a dose increase maybe alleviating any symptoms but may not address the cause of such elevated TSH.

    As yours does not reflect T4 levels, you should ask for further investigations into a possible pituitary adenoma. Also pituitary resistance to thyroid hormone (impaired tissue responsiveness) as both of these might mean an excessive TSH response even with sufficiently present thyroid hormones.

    For a better thyroid function overview you will need T3 tested. Members use a private lab ( link below), although your endo should do this test along with others to identify the cause of your high TSH.

    .

    Private labs testing

    thyroiduk.org.uk/tuk/testin...

  • Radd has given the probable cause as your pituitary .Look back at yesterdays posts for one by mbarber with a link to Dr Chris Kresser.

  • Thank you. I will take a look now

  • It just looks as though you are undermedicated. Healthy people usually have free T4 in the top quarter of the range (at least 19.5) - not the bottom - and your brain is having to flog your thyroid to produce even that much - therefore very high TSH. Bet your endo is diabetes specialist, not a thyroid specialist. Won't he increase your levo at least?

  • Have you had vitamin D, B 12, folate and ferratin checked?

    Many thyroid patients find these need to be at the higher end of the range. Otherwise T4 can just sit in the system not getting used, but pituitary still recognises a problem and raises TSH

    Do you have antibodies? Is this auto-immune Hashimoto's ?

    going 100% gluten free may help,

    If have undiscovered gluten intolerance then vitamin levels likely to be low

  • I haven't had the vitamin tests that you mention, but was just asking Radd what tests to have for this and looks like you have kindly recommended. Do you know where I can get these done?

    My bloods were taken to look at antibodies yesterday so once I have results will know. Never had this test done before so I honestly can't answer at the moment.

    Going to try gluten free, which I have done in the past

    Thank you

  • Your doctor should be able to test your nutrients (B12 etc). But testing those will not tell you about your pituitary. There are a whole bunch of hormone tests needed for that - and a scan - your endo should know about those, that's his job. :)

  • a free t4 of just 12.1 is hardly normal what on earth is your endo talking about

    Your TSH should be around 1.0 and your free t4 and free t3 BOTH in Balance in the UPPER QUADRANT of the ranges

    Sounds to me like you need a much higher dose of levothyroxine

  • Thank you. Just getting used to the forum and trying to reply to everyone!

    Feel like I'm being fobbed off and that because case not simple to fix that I'm just left to try and deal with it myself.

    I will need to change prescription to get higher dosage, which guess means another visit to docs.

    Going to get everything in place over the next few days/week such as T3 tests and take this all with me to try and get something done

  • Thank you for your comments and thoughts on my situation.

    I am going to look into your suggestions and try and find out more.

    Also look at care options. The endocrinologist basically said see you again in three months, even though has sent off for thyroid antibodies test, which results will be back for in a couple of weeks.

    I also requested T3 levels with the endo and she said that FT4 was OK level so T3 didn't matter and no need to test. I disagreed with her, but to no avail regarding a test. At this stage I am more than happy to do myself as need to get to the bottom of the issue and fix it. Been going on for far to long!

    I notice other members have had key vitamin tests done. Would you recommend these as well and if sof which?

    Thank you

    James

  • James

    75mcg of levo is a miniscule dose most men would be on 250mcg or even 350mcg ............my husband certainly was

    Louise Warvill at Thyroiduk needs to know who this idiot endo is because she certainly needs major lessons in thyroid biology and others need protecting from seeing her

    If you want to prove your point to her you could simply order NDT online and self medicate many on here do

  • Although he had said he will see you in 3 months he should send a report to your GP when he sees your bloods. You could ring up and ask if you could be sent your results or ask your GP.

  • See thyroid uk for where to get tests done privately

    thyroiduk.org.uk/tuk/testin...

    I use Blue Horizon - Thyroid plus eleven - gives all necessary thyroid tests, plus B12, Vit D , folate, ferratin and antibodies

    Easy to do - postal kit with finger prick collection. Results by email 2 days later.

    Best to do all thyroid blood tests first thing in morning, before eat or drink (can have water) Also don't take thyroxine in the 24 hours before hand. Take immediately after blood test.

    Also generally best to take Levo either first thing in morning - no food or drink for an hour after. Or many if us find taking at night gives better results. Also no food for at least two hours before.

    No other medications with thyroxine. Most need a four hour gap before or after.

  • Sack your endo! Your results are not odd at all for someone who is undertreated. I mean the endocrinology profession says that TSH is the most sensitive marker of peripheral tissue levels of thyroid hormones and then ignores it when it is still high... (insert appropriate profanity here). What is your endo thinking!!!! TSH responds most strongly to T3 so a high TSH strongly suggests that your T3 is on the low side, at the very least it is too low for good health. But also your T4 is low in the range, so there is plenty of scope for an increase in meds before it becomes supraphysiological (in other words before it goes over the top of the range... sorry, just felt like that was the right word.) It is my understanding that most people on levothyroxine need to get T4 into the upper half of the range or even slightly over in order to bring TSH down and T3 up where it needs to be. Think of it like this... a normal healthy thyroid gland would also be producing a little T3, which isn't supplied by the meds, so the conversion processes have to work a little harder, and you need to supply a little more of the raw material i.e. T4 for the conversion processes to work on. The fact that your pituitary is able to recognise that T3 is still low and respond by raising TSH is actually a good sign in my book... it means that you haven't also got euthyroid sick syndrome (basically other health issues), which tend to suppress TSH even when T3 is low. So an increase in meds may well sort you out. This is worth doing because a high TSH essentially means that your poor tired thyroid gland is being flogged to produce thyroid hormone when it is not up to the task, so leaving TSH high cannot be a good thing. An increase in levo is a simple thing to try and I cannot for the life of me understand why the endo hasn't suggested it when you are on a relatively low dose. Good luck!

  • Just to add: these are the prescribing guidelines for levothyroxine, and it seems that they are not being followed:

    cks.nice.org.uk/hypothyroid...

    "The treatment target is a thyroid-stimulating hormone (TSH) level within the reference range (typically 0.4–4.5 mU/L)."

    and

    "Adjust the dose by 25 micrograms to 50 micrograms every 2–3 months according, to TSH levels."

  • >> Your TSH should be around 1.0 and your free t4 and free t3 BOTH in Balance in the UPPER QUADRANT of the ranges <<

    Do not forget Dr Toft's dosing opinion: at first TSH 0.2-0.5 and T4free high. If not helping, then TSH very low and T4free even above range, just carefully keeping T3free around mid-range

  • You need to increase your thyroxine as you are taking too little.

  • Thanks everyone. All the information is a little overwhelming. Going to get an appointment with my GP and discuss options on increasing thyroxine.

    Hoping that something works for me as feeling pretty rubbish about the situation at the moment!

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