20 months on... Still feel rubbish! Advice needed

Background: Diagnosed 4 months post partum with UAT. Initially on 100mg of thyroxine, gradually reduced to 50mg after feeling symptomatic (exhausted, achey, hair loss). Various blood tests conducted (Cell count, coeliac, Vitamin D etc). I asked the GP could I see an endocronologist but was told as my TSH is within range (Previous test result was 2.9) they would send me away. I spoke with GP and asked could I alternate my dose from 50 to 75, 50 to 75. GP agreed and said to ensure I had a blood test. Had my bloods done on Friday and the TSH is now 3.1. Dr has assessed and put a note to continue if feeling ok and if not to book an appointment. Luckily I had the foresight to do this and have an appt on 6 Sept.

What do I say? Do? I am knackered ALL the time despite 8-9 hours sleep a night. Yes, I have a toddler but this is almost like it was before I was diagnosed.

My Mum has Graves disease, treated by radioactive iodene which killed her thyroid. Due to familial history I had tests way before diagnosis and my TSH was around 0.6. I remember them commenting at the time that whilst it was low, it was still within the normal range. So surely, for me, th aim would be to get back to 0.6?

7 Replies

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  • Welcome to the forum, CJT110814.

    The goal of Levothyroxine is to restore the patient to euthyroid status and for most that will be when TSH is 1.0, or lower, with FT4 in the upper range. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.warvill@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP when you ask for a dose increase.

    Do you know the result of vitD test you had and were ferritin, B12 and folate ever tested?

    _________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Hi Clutter.

    Thanks for your reply. I must admit I felt a lot better when my thyroxine was higher.

    If I recall, it was low but within the normal range. I think ferretin and B12 were also tested but fine.

  • CJT110814,

    Did you see the results yourself? If your doctor told you they were fine that simply means they were somewhere within range and probably weren't optimal.

  • I will have done and IIRC, they were in the middle of the range.

  • Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, leaky gut and gluten connection to autoimmune Hashimoto's too

    Do you know if you have high thyroid antibodies? Been checked? If high this means cause is Hashimoto's.

    Adopting gluten free diet may help

    Lots on goggle eg

    chriskresser.com/the-gluten...

  • I have been to the GP yesterday. She agreed that my TSH should be more like my pre-illness level of 0.6 and to do this, I would need to up my thyroxine. So I am on 75mg of thyroxine for a retest in October. She said that if my TSH is still high and I feel rubbish, she will investigate further.

    Is UAT Hashi's then? She did make a comment when I asked had my antibodies been checked that no it hadnt and it was most certainly an autoimmune disease. I thought afterwards I have no clue what she meant by this so have asked my GP receptionist to send the GP a message seeking clarity.

  • UAT might be Hashi's, but it is not guaranteed by any means.

    Causes of underactive thyroid are listed here :

    forums.phoenixrising.me/ind...

    I have no idea whether the list is comprehensive and complete. I suspect it probably isn't.

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