t3 Monotherapy

[Jimjamio]

Hello everyone, I have been a reader of the forum for a while now and it is nice to know so many other people are struggling with un-resolved thyroid problems. This forum was the first place where I thought wow, these guys get it.

I have hypermobile ehlers danlos syndrome, I was diagnosed with MS in 2006 (symptoms from pre 2000) and was persuaded to take the campath treatment to slow it down.

Campath is chemotherapy (with the idea of rebooting your immune system) and after a couple of years I developed graves disease and had to have radioactive Iodine. The only truly good times I have had were in the times when I imagine the last of my thyroid function was dissipating and I was on t4 only. Struggled ever since trying to feel good not knowing what is ms, thyroid or ehlers danlos?

I had the pleasure (years and years ago before the t3 pricing palaver) of an open minded endocrinologist who did trial me on t3 monotherapy. I started to improve but when I got to 80mcg a day everybody started freaking out and I couldn't get a higher dose. I didn't have any hyper symptoms I think it was just an unusual dose.

Back onto combination therapy trying all different doses and combinations for so many years, never feeling good. The NHS has since removed my t3 prescription 09/23. I followed the advice of my last endo and my heart rate was 32 at its lowest and I was half a degree off hypothermic.

I was lucky enough to go and see a truly amazing doctor in the states (where the parents emigrated) who noticed I have a folate conversion problem, I was deficient in vitamin d and a few other issues which have since been adjusted. I manage the ms symptoms with my green prescription, my other markers are adjusted, the only thing left is my thyroid. Luckily the US doctor is happy to write a t3 prescription which is how I have been able to continue on combination therapy, without it I would truly be a mess or worse. This is not a permanent solution and an extremely expensive way to fill a prescription. I am sure that I could get a prescription from the doctor in the US, would I be able to fill it somewhere that I could order myself instead of having to rely on my parents organising everything? Not that they mind, I won the lottery in the parents competition.

My TSH is always fully suppressed, the last blood tests showed just over top of the range t4 just above mid range t3. The doctors see the results and immediately tell me I am over medicated and need to reduce my dose. I tell them that my heart rate as soon as I get into bed is 50 (was avg. 75 pre RAI) and I am freezing all the time, no energy, hair falling out, scaly skin. None of that matters to the doctors they just see the numbers. I think that I have a conversion problem that would be eradicated with t3 only.

I'm sure that I have read somewhere that there is actually a reason why your TSH is super low if you have no thyroid? Something to do with the communication between the thyroid, pituitary and the hypothalamus? This could have been a wishful dream but if anyone could corroborate I would really appreciate it.

I read recovering with t3 by Paul Robinson and it really struck a chord. I had a phone call with a new endocrinologist yesterday (asked for a second opinion as the last guy didn't listen) and told her that I wanted to go onto t3 monotherapy, she actually listened and is going back to talk to the team about our conversation and my desire to try monotherapy again. I really don't hold out any hope as the guidelines say a maximum of 20 mcg a day. Those are also the same guidelines that say a small percentage of people will require combo or t3 only treatment. The same guidelines that say if a person is already on combo therapy they should not be taken off it. The trouble is it seems as if they only pay attention to the guidelines if it saves money.

I tell the doctor that I want to monitor my thyroid health with my pulse and temperature they look at me like I am crazy, but I really don't care what my blood levels say if my body says different, especially when I have a large piece of the puzzle missing (my thyroid.)

My plan is to wait and see what the letter I get back from the endo team says and then probably disagree with it and hopefully start the conversion to t3 only. The doctor asked yesterday how you change from one to the other?? I guess that is the scary part, there are no instructions. I don't remember any special considerations when I switched years ago. Just started on a small dose and increased it slowly according to symptoms.

Does anyone know the prevalence of t3 monotherapy around the globe.

Could I please ask for some advice on how to go about sourcing t3 privately as I feel it really could be what puts me on the path to feeling as good as can. Thank you to everyone who tells their stories on here. It definitely helps knowing I am far from struggling on my own.