Thyroid UK

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
oldestnewest

Change your endo this one is dangerous.

1 like
Reply

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.

Reply

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

Reply

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.

Reply

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.

Reply

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 😥

Reply

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

Reply

Mistydog,

Louise.roberts@thyroiduk.org.uk

Reply

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

Reply

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

Reply

You may also like...