Endo will no longer give me t4 infusions

Hi I'm 44 and been suffering with a u deactivate thyroid for 10 years, which used to be controlled by a normal dose of levo, but after the birth of my 6th child my thyroid hasn't been controlled resuiting in me needingredients to have intro infusions for almost a year ,then my endo said he would have to "challenge me" back on levo i feel so ill I'm on 1600mg of levo a week they have to crush it i haven't been stable on it so I asked my endo if I could go back on infusions but to no avail it's to expensive so I have to suffer feeling so rubbish and to top it off i keep becoming anemic and noone knows why, I have to keep having iron infusions because I don't absorb iron either...........CAN ANYONE HELP plz either a really good endo or what to do next xx

10 Replies

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  • Change your endo this one is dangerous.

  • Wow 1600mg of levo a week. You cant be converting much or you would have gone massively hyper. I'd try something else - T3/T4 combo or NDT.

  • Hi I used to be on t3 alone for a trial period after 3 weeks I had a fit, so I had to go back on the infusions until I was stable thanks for the reply x

  • Yes - T3 is the active component in thyroid. It needs to be dosed daily for optimal dose. Managing it with a blood test once a month often doesn't work. You have to use your own methods for working out how much T3 synth or NDT to take each day. I use Temp high/low, tingles in the feet, head spins, activity, thyroid ache, energy level. I tried T3 for a few weeks and never sorted it out and have been on NDT for the last 14 months and while it's not perfect in my mind it's the best of a bad bunch.

  • Ruby72,

    Perhaps you could see another endo for a second opinion about the T4 infusions. I was under the impression that only unconscious patients were given T4 injections and as soon as they were able to swallow they were switched to tablets.

  • Yes this is true but he had no choice as my tsh was 500 yes ypu read correct 500 it took a few weeks to come down, my argument with my endo is I'm not stable on levo which is causing me to feel ill, he says I can't go back on infusions which I'm perfect on, I even asked today to be referred to another hospital but he fobbed me off and said I will be level in 8weeks 😥

  • You really need a good endo. Get a copy of the list from Louise Warvill Clutter can you give the address?

  • Mistydog,

    Louise.roberts@thyroiduk.org.uk

  • Also, why does he say you cannot have them? If they are keeping you well, then he needs to give a good reason.

  • Hi misty dog, they only reason he won't give me them is because "they are to expensive " for life, I have just found a interesting post on iron deficiency anemia which I am and it has is suggesting that it's from a large amount of Levothyroxine given which causes it, that's me so maybe I could go down that route of its making me ill so I need the infusions back, could I also have the list of the best endocrinologists in UK I really need to get this sorted I think the admistractor said something about it in one reply x

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