Please help!

I've got an underactive thyroid and it's been all over the place since having a baby 15 mnths ago. I was taking 150mg levothyroxine, 125mg on alternate days and it put me right over with horrible symptoms. Blood test results were TSH 0.07 (range 0.55 - 4.88) and T4 was 20 (range 9-23). Not sure what T3 was as they didn't test it, despite me asking.

Was advised to lower meds to 125mg every day and felt better for about a month, then started feeling really bad again eg heart palpitations, weeing and drinking loads, body aching and insomnia and generally feeling wiped out. Have had blood tests done again (9 weeks after reducing meds) and TSH is now at 0.15 and can't remember the T4, but it was around the middle of the range, but I feel worse than ever. The GP has advised me to drop to 100mg every day, but I'm no longer sure whether I'm feeling bad because my thyroid is over or whether I've reduced the meds too much.

I'm feeling so fed up, all I do is go backwards and forwards to the GP getting blood tests done and meds either upped or lowered. She says it's normal after having a baby, and won't refer me to anyone, but I'm so fed up of feeling ill. I can barely get through the day looking after 2 young children I'm so wiped out all the time. My iron levels are ok at the moment I should add.

Any advice would be greatly appreciated.

3 Replies

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  • My dear girl, I do feel for you

    It's bad enough with a little baby to look after as well as your family in general when you feel so ill, despite the medication. We used to rely on doctors but the Thyroid Gland appears to be the cinderella of proper/adequate knowledge.

    What good are doctors if they haven't a clue what they are doing that we, the patients, are spending our time on the internet looking for answers.

    Because many of the doctors' patients may be 'fine' on levo, there are many like those (over 24,000) on this forum not improving much or feeling worse so we, 'the problems' are thought eventually to be nuisances. "After all our blood tests inform the doctors that we are 'in range' so what are we complaining about".

    Hypochondriacs because we reappear in the surgery often then are offered 'substitutes' (i.e. anti-depressants/pain reliefe etc) instead of a decent dose of levo or additional alternatives.

    First off, they don't listen to us when we tell them our symptoms are getting worse or not improving but are told 'nothing wrong - your bloods are perfect'. They adjust doses willy/nilly according to the TSH and I'll give you a link which is quite extensive in the treatment of hypo. You will get better but it is only with your own research and I do feel for those who don't have an internet connection.

    This Doctor, Dr Lowe, was an Adviser to Thyroiduk.org.uk but, unfortunately, he died accidentally and so this is archived and some links within may not work but many do and has a wealth of info:

    web.archive.org/web/2010103...

    An excerpt:

    Many endocrinologists talk of using the TSH and thyroid hormone levels to "fine tune" hypothyroid patients’ thyroid hormone dosages. Considering how much the hormone levels vary, however, it’s obvious that the concept of fine tuning is mistaken. For the sake of their patients’ health, endocrinologists should promptly abandon the notion. This is unlikely, though, due to financial inducements the endocrinology specialty receives from corporations that profit from doctors endlessly ordering the hormone levels to "fine tune" their patients dosages. Hopefully, though, you can use the scientific evidence to persuade your doctor to use a safer and more effective approach with you.

    web.archive.org/web/2010103...

    thyroiduk.org.uk/tuk/thyroi...

    hypothyroidmom.com/is-your-...

    I would increase my dose of thyroid hormones if the TSH was the only 'evidence' and not listening to you.

  • You poor thing, you're having a rotten time at the moment.

    Were you stable on thyroxine before your last baby?

    I had very similar symptoms to you last year. I spent 6months on levothyroxine at various doses , increasing and decreasing, always in range but feeling increasingly more disabled (bedbound) most of the time. My kids are primary school age, couldn't imagine looking after preschool kids feeling like I did.

    Insist on that NHS endocrinologist referral or find a decent local private endocrinologist, ask for a recommendations in a separate post. Mine switched me from Levothyroxine to T3 and now my GP prescribes it on the NHS. It may be that you just need some T3 added to a slightly reduced daily dose of thyroxine to feel better. Maybe you are just not converting T4 to T3 very well?

    Also, you say your iron levels are ok. Does that mean your haemoglobin is in range or are you referring to your ferritin levels? You can have normal haemoglobin but low ferritin and still be anaemic. Has your GP tested your ferritin specifically? If so, and it's in range, ferritin still needs to be at least halfway through the range for us hypothyroid people to feel better.

    B12, folate , and Vitamin D levels also need to be tested by your GP. Even if these come back "normal range" they need to be high in range for us with hypo to feel better and use our thyroid meds properly.

    There is hope but you've got to be determined !!xx

  • Tiredchick, It looks as though your GP is concentrating on raising your TSH into range which is why she has suggested reducing Levothyroxine to 100mcg. FT4 mid-range on 125mcg will drop lower if you reduce to 100mcg. FT4 20 when you were on 125/150mcg was 'ideal' for converting T4 to T3.

    Apart from pregnancy hormones, autoimmune thyroid disease (Hashimoto's) can make you feel overmedicated when the thyroid is attacked and hormone is dumped as cells are killed off. If your dose is reduced you will undermedicated a few weeks later. Ask your GP to test antibodies next time you have a blood test.

    thyroiduk.org.uk/tuk/about_...

    thyroiduk.org.uk/tuk/about_...

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