TSH levels high

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Hi everyone,
I’ve just had my blood results back and my TSH  (29.1 and T4 w11.9)  is still really high, which has me feeling quite worried. My main concern is that this might mean my thyroid cells aren’t being properly suppressed, and I’m anxious about what that could mean long-term.
Has anyone else had a TSH reading this high after surgery / during treatment? If so, how did things turn out for you?
What’s also frustrating is that I genuinely thought I was taking my levothyroxine correctly. I’ve been really careful with timing and asked the ENT doctors about it — they said it appeared I was taking it properly and advised me to wait for the results… but clearly something isn’t right.
Now I’m being told to wait another four weeks and I’m struggling with the anxiety of that, especially knowing how important suppression is.
I’d really appreciate hearing from anyone who’s been through something similar or has had reassurance after a high TSH. Feeling pretty unsettled right now.
Thank you

  • Hi  

    I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

    I'm sure that someone who has experienced something similar to you will be along soon.

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  • How long is it since your surgery and what dose are you currently taking?
    Do you know what your TSH was before your completion?
    Did you take Thyroxine between your hemithyroidectomy and your completion?

    Sorry for so many questions but they are all relevant.

    The docs tend to start everybody on too low a dose and then adjust until they get where they need to be. It can be time consuming and very frustrating, but you will get there eventually.

    Best wishes

    Barbara

    “Scars are tattoos with better stories.” – Anonymous

  • Hi Barbara 

    After the first surgery 6 weeks after TSH was 1.46

    I didn't take any medicine as they were happy that the remaining thyroid was coping.

    Second surgery was the 5 Dec they put me on 125 levothyroxine 6 weeks was when the the blood test was done and that came back at 29.1 TSH.

    They've  upped my dosage to 150 and to have blood test in 4 weeks time.

    It is very frustrating. 

    Thank you for replying. I really appreciate it.xx

  • I suspect the half thyroid might not have been coping as well as they thought. 
    But, that's all in the past. 

    Have you neem told not to eat or drink for at least 30 minutes after you take your tablets, and not to take anything like calcium or iron supplements for a lot longer (I'm saying 4 hours off the top of my head).

    It may be you just aren't on a high enough dose
    Often, people aren't told how to take them
    Sometimes, if you're taking something else, it can be reducing the Thyroxine absorption.

    Best wishes

    Barbara

    “Scars are tattoos with better stories.” – Anonymous