Is this as good as it can get?

I'm auto immune hypo, diagnosed a few months ago, started on 25 levo, then 25/50, 50/50 and for the last few weeks 50/75, GP has been very conservative about increasing dose but good at testing me every 4-6 weeks.

My TSH hase gone down from 5.1 in Oct to 2.71 (0.27-4.2) and T4 has gone up from 12 to 16 (12-22) so good news all round. The results of the last test were left at reception for me with a note to say everything is normal and I should be retested in a year's time.

While I am pleased that my results have come within range, I am not confident to leave it for a whole year to check all is still ok. I do feel better than I did a few months ago, I really had forgotten what it felt like to be well. I'm still a bit more tired than I would like but that could just be down to juggling too many things in life. I have been gluten free for over 2 months (and will continue with this as stomach issues have been more or less resolved with this) and I supplement with Vit D3, Selenium and B12 thanks to advice here.

Is it normal to leave it so long between tests when I haven't had at least two consecutive 'stable' results? Should I be happy that the doc is fine with this and maybe just get a BH test done myself in 6 months time?

I do wish GP's had time to look at the bigger picture :(

5 Replies

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  • mostlyhappy Well, I wouldn't be satisfied with that. The aim of a treated hypo patient is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges if that is where you feel well and symptoms abated.

    At 2.71 your TSH is still too high and you are still suffering with fatigue. Your FT4 is not in the upper third (that would be 19+) which is generally the aim.

    You should still be having tests and dose increases every 6-8 weeks until you feel well, and once stable a re-test every 12 months is the norm.

  • thanks Seaside Susie, that's what I had picked up too, seems that as long as you are broadly in range, GP's are off the hook. Given that i haven't actually spoken with the GP I think will book a phone appointment to discuss (and try not to feel guilty about doing so). x

  • You are relatively newly diagnosed, so I thought the GP might not write you off so quickly.

    A TSH of just under 3, is still hypo and we feel best when it's around 1.

    Many doctors make the mistake of stopping increases when the TSH is anywhere in the range and your TSH is about halfway but, as stated we feel best when its around 1.

    If you begin to get more symptoms or don't feel so good get another blood test. It should be the very earliest possible and fasting although you can drink water. Allow 24 hours between your last dose of levo and the test and take it afterwards. This allows TSH to be higher as doctors are apt to adjust according to the whereabouts of the TSH which isn't ideal for us.

    Ask if he will do Free T4 and Free T3 as it is T3 we need in our cells and it is the only Active Hormone. Levothyroxine (T4) is inactive and it's job is to convert to T3.

    If GP hasn't tested B12, Vit D, iron, ferritin and folate and antibodies, ask for these too. You can say you have been given advice by the NHS Choices for info on hypothyroidism.

  • thanks Shaw, I had the others tested at the beginning, all on the low side except for antibodies which were over 700. It is very useful to know about NHS Choices guidelines, I am going to request a phone appointment and quote the NHS advice. I am not good at dealing with GP's until this year I hadn't been near them for years, I always feel like I am wasting their time. My GP made me feel like a deluded hippy when I asked her about coming off PPI's to try and heal my stomach naturally and improve mineral absorption. She advised against it, I did it anyway, and now I have FAR less gut issues than when I was horsing through 30mg Lansoprazole every day. While I do respect their general medical knowledge and training, GP's don't like to be treated as avisors rather than Gods do they?

  • It is Thyroiduk.org.uk who is the NHS Choices. So do clarify with them to confirm before you see GP.

    Advice and I other Admins give is either because we've had the same symptoms/problems and advise based on how we recovered our health plus reading lots of things. This is an excerpt from Dr Toft was President of the BTA and you can email louise.warvill@thyroiduk.org.uk for a copy of the Pulse Online article:

    6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

    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).

    Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

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