Advice - TT, on T4 feeling awful

Hi everyone, I'm writing this on behalf of my cousin, Julie. She's had tt 18 months ago, is on 125/150 alternate days T4 and feels so awful still. She has put on so much weight, her skin is extremely spotty, her body aches, she's very low and keeps crying, has no energy and wonders if there is something else drug wise that may help her that she could request at her endo appointment tomorrow. Please, can anyone advise us? Many thanks xx

6 Replies

  • Ask if the Endo will prescribe T3 to to a reduced T4. Some of us do not feel well on levothyroxine alone. I'm one and I didn't have my thyroid gland removed. I am on T3 only now. T3 is the active hormone required by us and required by every receptor cells in our body. If T4 doesn't convert sufficiently, we remain unwell.

    I will give you a link but don't show it to your cousin as she may be too fragile yet and is struggling too much. At first we do not realise why we are not getting well when we are told by the doctors/endocrinologists that levothyroxine is the 'be all and end all' (one little pill daily and we'll be fine). We've had to read and learn and ask questions and it is not straight-forward for many.

    When she has a blood test she should allow 24 hours gap between levo and the test which should be as early as possible. The doctors only appear to go by the TSH and don't test Free T4 and Free T3's, Neither do the labs if TSH is 'normal' in range. Always get a print-out/copy of blood tests for her own records and to post if she has a query.

  • Thanks Shaws. We both have same nhs endo - pituitary tumour for me - and are both seeing her tomorrow, Julie 2.30pm and myself 3.45 pm. Whilst I've not had Graves, I'm trying to help my cousin and I managed to persuade our endo to let me try t3 as I sourced it myself. Along with results of mri brain scan, I should be starting my t3 tomorrow. As I said, I'm not too good on Graves info, but will accompany Julie at consultation and mention t3 or NDT for Julie to try. Thanks for your help xx

  • This is a link to Clutter's Profile. She had Graves. I doubt NDT will be even considered, unfortunately. Good luck with T3. I am very well on it, thankfully.

  • Ask the Endo what her Free T4 and Free T3 is. Probably never been checked.

    If GP hasn't checked B12, Vit D, iron, ferritin and folate ask for these as we are usually deficienct and can cause problems too.

  • Thank you xx

  • More ammunition but it may not have any effect on the Endo as the BTA state only levothyroxine is to be prescribed. Those of us on the addition of T3 or T3 only definitely know the difference and wellbeing.

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