thyroxine injections anyone know of a endo in uk who will try injections for me. I am thyroid hormone intolerant. have tried everything.

gp says he can do no more for me. I have to live with it. I feel better than I did taking thyroid meds, all of them you name it I have tried it any ideas would be welcome kind regards brenda

[Heloise]

percy, how many types have you tried? Is it the fillers? Someone even mentioned a liquid form.

I wonder if a functional medicine doctor could offer some help. This one talks about 22 different reasons why being on hormone may not work. This short video #5 in the series mentions the cortisol problem.

youtube.com/watch?v=BwWqj1E...(Not working as expected?)

[Hidden in reply to Heloise]

what is a functional doc, never heard of one. as for brands of thyroxine I have tried purified, armour,nutri throid, all makes and brands. whether I like it or not I am T H Intolrant. no point seeing any more endos. I cant take throid hormone. regrds brenda

[Heloise in reply to Hidden]

I think this type of doctor if you watch the short video, is interested in WHY your thyroid isn't working. Endo's don't care because they only replace hormone. The functional doctor will try to find the root cause, whether too much cortisol, or too high testosterone, vitamin A deficiency or the 22 other causes this whole series of 5-min. videos points out. Sometimes curing the cause will make the hormone tolerable.

[Jackie]

Hi Not sure but have you looked at armour and other natural products? I cannot take levo, tried 5 times, made me so dreadful.

Also, about injections. I was advised to have vit D injections, as very , very low. However, GP would not do them ( cost), however, later my calcium went dangerously over range (still is), I had to stop the Vit D immediately, and can not take it ( although low). If I had had an injection , I would not have been able to react to it, quickly enough as would still be in my body.Also I would imagine very hard, or impossible to judge the dose, too much , even more harmful than too little.

I would find a private Endo myself, ask for a referral and let them and look at the options for you.

Best wishes,

Jackie

[Hidden in reply to Jackie]

yes ad I said I have tried everything, no point seeing any more endos I am T H Intolerant. in other words I am intolerant to any thyroid hormone. regards brenda

[Jackie in reply to Hidden]

Hi brenda,

Sorry, all I could suggest Just a thought, does any one know why you are intolerant?.I have a lot of problems with lots of drugs. However, once on treatment for thyroid, this improved slightly. Some of mine cause known, lots not.It is very difficult, I know. Some of mine due to severe autoimmune Pancreatitis, not drink!

I expect you have tried the T3, from Belgium , that is usually Ok if cannot tolerate, our T3. It is a prescription only drug, a friend found that was the only thing she could tolerate, until she found an NDT, suitable, also from abroad.One of the admin staff told her about it. The Endo and GP did not know about it.

Best wishes,

Jackie

[Jackie in reply to Hidden]

Brenda,

I have just looked them up one, W.P. thyroid, the T3 is Cynomel.

Jackie

[Chippysue]

Have you tried purified levothyroxine? This is what I am prescribed - it is just levothyroxine with calcium phosphate, they are hand made by Martindales.

Sue

thyroiduk.org

[Hidden in reply to Chippysue]

yes I have tried purified . it is the thyroid hormone I cant tolerate in my body. very rare doc says. regards brenda

[RedApple Administrator in reply to Hidden]

What does your endo say about this?

[Hidden in reply to RedApple]

have not seen endo since doc told me I am T H Intolerant. I rang a professor thyroid nurse in London to make a app with hirtm. when I told her I was T H I, she said he would not be able to help me. so weary od it all, but I do appreciate your help and support kind regards brenda

[RedApple Administrator in reply to Hidden]

Hi Brenda, so sorry to hear your situation is this bad. Are you able to share some info on what goes wrong when you take thyroid hormones and why you feel you're intolerant to the hormones themselves?

I can imagine how weary of it all you are, and will understand if it's too much for you to do so. But if you can share the relevant info, you never know, someone somewhere may have a suggestion.

[helvella Administrator]

If you are intolerant of thyroid hormones, why do you think an injection of thyroid hormone would be worth trying?

I'd be concerned that by it going straight into your bloodstream, and in quite large quantities, it could have a devastating effect.

A bit more explanation and background information might help others to help you.

Rod

[Hidden in reply to helvella]

oh helvella I am so weary of it all, sorry if I seem difficult, I have tried armour, nutrithroid,liothyronine,generic levo. purified liquid eltroxin. seen 3 endos, including dr s. I just don't know what to do next. had all the tests, ferritin cortisol,24hr urine, all come back normal. there may be others I have had I cant remember of the top of my head, have asked doc for a full iron blood panel test. I await to see if possible on nhs. I will pay if not. he tells me I am only the second patient he has come across in 20years or more, says no further help he can offer me. I feel quite desperate some days. BUT I am less ill taking nothing at all. thanks a lot brenda

[helvella Administrator]

Have you been trialled on dextrothyroxine? TRIAC?

[Hidden in reply to helvella]

no have not heard of it before. have just had a quick read on net. I will mention to doc when I see him next thanks again brenda

[helvella Administrator in reply to Hidden]

Go here:

ncbi.nlm.nih.gov/pubmed/

And type in (or copy and paste!) those names and also tetrac. You will most likely find more relevant information there than using a general purpose search engine. I know many links will be blind alleys (you often won't be able to see the full papers) but sometimes, having identified a paper, you can find it elsewhere.

For someone in your situation, you need medics who at the very least don't get phased by these substances (or have never heard of them).

Rod

[Nordidordi in reply to Hidden]

Did you ever manage to tolerate meds, how? What?

[Nordidordi in reply to helvella]

Brenda did you ever manage to come up with a solution?

[helvella Administrator]

There appears to be no licensed levothyroxine injection product in the UK. (I.e. not listed in BNF nor on EMC.)

Triiodothyronine (also called liothyronine or T3) is available as a pack of 20 microgram powder for reconstitution.

At an NHS price of £57.14 per dose, a single dose per day for a year would cost £20,856.10. However, the documentation suggests 25 mcg twice day might be required. That could require four times as much - £83,424.40. (To get 25 mcg you would need to open two packs and mostly medics are unwilling to keep remaining product after opening for later use.)

I hazard a guess that getting any doctor to approve that sort of expenditure is going to be difficult.

Rod

[Hidden in reply to helvella]

my gp gave me liothyronine on nhs, no joy really made me ill. thanks anyway rod

[helvella Administrator in reply to Hidden]

What? You have had a liothyronine injection?

[Hidden in reply to helvella]

no no liothyronine tablet form regards brenda