Test results mean I'm stuck on same dose

Hi everyone

Firstly thank you for all the advice and support everyone gives on this forum; it's very helpful for relative newcomers like me.

I have just seen my latest test results and am wondering what to do next. I was diagnosed with borderline hypothyroidism in autumn last year with a TSH of 4.84 (0.2-4.2) and T4 15.4 (11-22). I was started on 25mg of levothyroxine and posted on here about how awful I was feeling. I was eventually given 50mg after a test result of TSH 4.23 (0.2-4.2), T4 of 15.1 (11-22) in January and have felt a bit better but I still don't feel as well as I would like. I still feel very tired and cold sometimes; nowhere near as bad as before though.

My latest results are TSH 2.96 (0.2-4.2) and the results says no action required so I'm assuming the doctor won't up the levothyroxine. T4 isn't tested here unless the TSH is out of range.

My D3 levels were insufficient in the autumn, went up to 87 nmol/L in February and are now 64nmol/L although I'm still supplementing. >60 is sufficient.

I haven't been tested for B12 since the autumn and that was 268ng/L (180-630) then but I supplemented it as I wanted to get all my vitamin levels to optimum.

Please can anyone advise me - do I go back to the doctors and ask for a dose increase? I think I might have a battle to prepare for, if I do. I'm hoping to see a different doctor in the practice as I can't stand to be told that I should be feeling fine (and be asked am I depressed/exercising etc. 🙄!!) I've read that TSH should be nearer to 1 but what do I say? Any thoughts please kind people? Apologies if I've missed anything or put it in the wrong format. Thanks all

13 Replies

oldestnewest
  • Explain symptoms not resolved and that you would like to trial a higher dose. 75 mcg. I've never had a problem with asking for increases, especially when tsh some distance above lowest level of range. Be calm and assertive and all will be well.

  • Thank you beh1, it sounds so reasonable when you put it like that. I'm hoping a different GP will see it that way too. I was thinking I might have to back up my case but you're right - the fact is the TSH is nearer the top than the bottom and surely if I ask to try 75mg and see how I feel?

    Thanks for your calming words. X

  • Chelidonium62 Here is some information that you can shove under your GP's nose, oops sorry, print out to show your GP.

    From ThyroidUK's main website > Hypothyroidism > Treatment Options:

    "According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above."

    Cheap little book, obtainable from Amazon or maybe your local pharmacy, worth £4.95 just for that one sentence! GP can't really argue as it's produced by the British Medical Association and it's by Dr Anthony Toft, past president of The British Thyroid Association and leading endocrinologist.

    amazon.co.uk/Thyroid-Disord...

    Also -

    Dr Toft states in Pulse Online Magazine

    "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

    You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org.uk , print it out and highlight question 6 to discuss with your GP and then ask for an increase in your Levo as you would like to be free of your remaining hypothyroid symptoms so that you can hopefully start living something like a near normal life again. Don't forget to smile at her :D

    **

    Recommended level for Vit D is 100-150nmol/L, you will need to continue with a maintenance dose when you've reached that level.

    There are important cofactors needed when taking D3 vitamindcouncil.org/about-v...

    D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

    D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

    Magnesium comes in different forms, check here to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds naturalnews.com/046401_magn...

    **

    There's not a lot of point in retesting B12 as it just shows that you are supplementing​, but it can show whether you are taking enough. Recommended level is very top of range, even 900-1000.

    When taking B12 we also need a B Complex to balance all the B vitamins.

  • Thank you SeasideSusie, that's very helpful. I'll get hold of the book and I definitely need to look at making sure my vitamin levels are as good as I can get them as vitamin D is still way off that and the others are probably not quite where they should be yet. Thanks for your advice x

  • SeasideSusie, thanks so much for this info. I am ordering the book today and have requested the article, as I am in the same position and need to ask my doctor for a dosage increase. Thanks again :)

  • Have you had thyroid antibodies tested? The most common reason in UK for being hypo is autoimmune thyroid - usually diagnosed by high antibodies - called Hashimotos (though apparently approx 20% with Hashimotos never have raised antibodies- then scan of Thyroid may be helpful)

    Anyway if you have Hashimotos look at food intolerances- usually gluten and improving gut health

    See The Thyroid Pharmacist website for masses of info

  • Hi SlowDragon

    I had one type of test which was negative, TPO I think and the result was Ab 14 iu/ml (<60)

    I doubt the doctor will let me have a thyroid scan but I'll certainly look at that website and consider gluten free. Thanks for your advice x

  • Ft3 test/result tells you what is really going on ....

  • Hi Marz

    No, GP says they're not done in this area so I think private testing would be the way to go for me on that! I agree that it would give a better picture - they didn't even test T4 this time as I was in range.

    Thanks for suggesting it. X

  • thyroiduk.org

    Click onto testing on the Menu on the left ....

  • You have no T3 result - what a surprise! I think a visit to medichecks or blue horizon for private tests may be your way forward.

    janveron

  • Thanks janveron, I think you're right. I haven't done them before as I'm on blood thinners so was a bit worried about taking a sample myself but I might see if I can get them done. Thanks for your help x

  • Just to update you all I have seen another GP at the practice. I went armed with printouts ready to argue my case but I said exactly what beh1 suggested and he agreed straight away! I'm sure my usual doctor would have trotted out the usual arguments against! So I have got a dose increase to 75mg Levo and he's said we can review it in two months and raise to 100 if this doesn't help. I know which doctor I'm seeing in future! And he didn't make any 'lifestyle' remarks about slumping on the sofa. A nice GP makes such a difference. Thanks again for all your advice everyone!

You may also like...