TSH Level Confusion!

Just before Christmas I was diagnosed with hypothyroidism. My TSH level was 100 and I was prescribed with 50mg of Levothyroxine, I then had a blood test after 6 weeks and my TSH dropped to 75 and I went up to 100mg of Levothyroxine. After a further 6 weeks I have dropped to TSH level of 6. I was expecting that as my TSH levels dropped my symptoms would improve, however they have got worse and i'm finding it very confusing. Just wondering if this is normal and if anyone can offer any advice?

10 Replies

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  • K8e8888,

    You are not yet optimally medicated and require a dose increase to bring TSH down to 1.0 or lower.

    The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

    Symptoms may lag behind good biochemistry by a few months but you should start to feel some improvement in symptoms as your TSH drops lower.

  • It can take a few months for you to feel better. Also, TSH increases exponentially as your thyroid hormone (fT3, fT4) fall. So although a TSH of 6 is much less than 100 getting your TSH down to 2 or 1 may take another 25 or 50 mcg levothyroxine. It's quite possible that your thyroid is failing quickly and so although your levothyroxine has been increased appropriately you may be 'chasing your tail' to some extent. With a TSH of 6 your doctor should be increasing your dose again, perhaps to 125 mcg.

  • Thank you so much for your comments, this is very reassuring and makes me feel a lot better about my test results! Also thank you for the email address, I will request the report.

  • When your blood tests are due make the appointment as early as possible, fasting (you can drink water). Allow 24 hours gap between your dose of levothyroxine and the test and take it afterwards. This allows the TSH to be at its highest as it drops throughout the day and the doctor may adjust dose unnecessarily.

    Also ask GP to check B12, Vit D, iron, ferritin and folate as we are usually deficient.

  • You should find some symptoms,maybe you had problems you did not realise were thyroid related, go quickly.With me it was snoring and sleep apnoea but it was nearly a year before I felt almost back to normal.

    As Shaws says vitamins need checking as deficiencies will slow progress.

  • Keep monitoring how you feel. Record that together with dose/brand changes and your results. Not everyone suits levothyroxine. Some people do better on liothyronine or a combination but you should give anything the chance for a while. I don't know the % - I think it may be about 15% who find T4 alone doesn't work for them.

  • I had exactly the same results last summer when I was diagnosed hypo. I am on 125mg now, but I do take numerous vitamins and minerals, as well as being pretty much gluten free too. My b12 was low too, but gp did not comment, so I just take sublingual b12 medication. Generally I feel so much better, but I am lucky I am now retired and have learnt to pace myself. I know when I have done too much and I have a couple of days not doing as much. I am not back to my old self entirely, but am just grateful to be so much better than I was when my TSH readings were over 100. I really thought I was dying!

    Good luck. Hope you get well soon.

  • Might try and get a print out of my blood results next time so I can see if I'm lacking in anything. It's still all very new to me so appreciate all the comments. Looking forward to getting it all sorted so I feel less tired and miserable! :)

  • It might just take time for your body to get back to feeling normal. Many people find that it takes up to a year to get back to normal, especially when being as hypothyroid as you were. For me, I had to switch to name brand Synthroid. Generic levothyroxine did not make me feel any better even when my lab results looked good. It's well known that in the case of this particular med, many people do better on the name brand.

  • it takes a

    long time to get well but hypothyroid also trashes vitamins and inerals first and far too few doctors or endos simply do not bother to face that issue

    go and request your GP tests

    ferritin

    folate

    b12

    vit d3

    its utterly vital all 4 are at least halfway in their ranges if your body is to utilise levothyroxine

    get copies of the results and we can help furthur

    you also need free t4 and free t3 hypothyroid simply cannot and must not be treated on TSH alone

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