Endocrinology Appointment...

[JillOliver]

After 15 years of being diagnosed as hypo, I have been referred to see an NHS endocrinologist...The reason being, I went to see my doctor this morning to discuss my latest blood test results and my TSH was unmeasurable and my free T4 was above the upper limit at 27 (already kinda discussed this in another post) and I lowered my levo myself, two weeks ago this weekend, because a) I felt a tad toxic and b) I wanted to trial the T4/T3 combo (thanks again Clutter!). So I ordered some T3 and started taking a small dose of 12.5mcg, split into two doses of 6.25mcg through the day, with T4 lowered to 150mcg. And I have to say, I feel amazing! I will have been on 12.5mcg of T3 and 150mcg of T4 a day for a full week this Thurs, so still early days, but I really do feel fab! Told the doctor all this this morning and she was happily surprised. Told her where I got the T3 from and she was slightly less happy, but she was ok, but she was saying I don't know what they may or may not be cut with and fillers etc and then said that as I was feeling so good anyway (assuming I am actually taking T3 and not speed), it might be a good idea if I can get T3 in the UK on prescription from an endo and right there and then she referred me!

Who else has seen an NHS endo and what can I expect

JillO

[frogandprincess]

Well, I wouldn't hold my breath. Odds are against you. If I am wrong, let Louise know about this Endo, who will be much in demand ...

[JillOliver in reply to frogandprincess]

lol! Thats exactly what I expected at least one person to say from all the other posts I've been reading on here...

[Polina44]

I see a NHS Endocrinologist who prescribes T3. I realise I am lucky to have found a good consultant. Good luck 🍀

[JillOliver in reply to Polina44]

Really?!!

And are you just bog standard hypo like me, no thyroid cancer etc?, as I just read a post on here that said the endo they saw, said no to T3, as it was only used if you had thyroid cancer ?

I do hope I can get to see a good one too!

[Polina44 in reply to JillOliver]

Yep autoimmune hypothyroidism. Levo only last 15 years now on combo. My consultant is on Louise's list. Try and get a referral to one of those 🍀

[JillOliver in reply to Polina44]

Thanks Polina44!

[Pinkpeony]

My Endo has given me a four month trial of T3 , and said I can continue if I feel better .

He is NHS but in the North East .

Regards PP 😀

[JillOliver in reply to Pinkpeony]

Fantastic!!!!! Are you on T4/T3 or just T3? And just hypo like me and no thyroid cancer, hashi's etc?

[tjmet1965 in reply to Pinkpeony]

Hi, anywhere near selby?

[Pinkpeony in reply to tjmet1965]

Hi tjmet1965 .

If this is for me , I am in the North East.

Regards Pp

[Pinkpeony]

Hi !

I have been Levo for over two years after RAI 😱 .

Never felt well , but had a raft of vitamin deficiencies which are sorted .

Endo is trialling me on T4/T3 so fingers and toes crossed !

Good Luck

Mary x

[JillOliver in reply to Pinkpeony]

Thanks Mary! x

[galathea]

Mine prescribes t3, he is in Dorset. However he says he doesn't believe in it and it's a placebo.....

I did get better after seeing him though. I decided he was such a prat I could do better myself, and started self treating with ndt... About 4 years ago.

Good luck...

X g

[JillOliver in reply to galathea]

haha! 'such a prat'

Thanks g! x

[Hidden]

I got T3 prescribed on national health although I actually consulted with him privately. He is on Louise's list too.

If this endo is not cooperative, seek out someone who is.

I have Hashi but feel so much better on combo.

Flower007

[JillOliver in reply to Hidden]

Thanks flower!

[JillOliver]

Yeah I'd read that <sigh>

[Clutter in reply to JillOliver]

Jill, I had a heated debate with my endo about T3+T4 research. He dissed the papers I cited as "too American", the European research as "not double blinded RCT", "lacking rigour" etc. He didn't deny the improvement in my health since I'd been taking T4+T3 and despite his beliefs about the lack of benefit, prescribed T3 anyway.

You'll have been on the combination for weeks/months before you get an appointment so it's plenty of time to judge how well it's working for you.

[JillOliver]

Good point! Maybe also....I was thinking....I could stop the t3 for a short period of time and just stick to the 150mcg of t4 only in case the endo asks if I've done this or asks me to do this and if I do it first I can say I've tried it... what do you think? And I guess who knows....I may even feel as good as I do now on just the t4

[sweetsusie]

Clutter - I'm confused about how this works..sorry! So..if I want to reply to something that someone has posted and hit the "reply" button to do that..no one else can see it? That I don't want..I want everyone to see it, so then do I have to always do a new comment?

[JillOliver]

Update:

Well finally had my first ever endo apt. today. They guy was nice, but straight away told me no chance of getting T3 on the NHS, as it was too expensive and wasn't the recommended treatment and there was one other person in my area he was seeing, that also wanted it and there was an ongoing saga, but they weren't going to get it either. He told me he had to be seen to be discouraging me from using T3, but I had two choices, one was to carry on self treating and using the T3 if I thought it was doing me some good, or two, he could work with me to find a dose of Levo not that suited me. He gave me 3 blood test slips so I could have a blood test every 4 weeks to allow for dose adjustments and I have to call his scecretary a day after each blood test to see if he needs me to change the dose.

I also have to have a short Synacthen test to check my adrenals, but he more or less said most people don't fail it anyway. And I am not really looking forward to it, having read a bit about it!

He also talked a bit about NDT and said to stay away from that altogether as a pigs thyroid is much more potent than a humans...but I'm sure he said that that's why some people feel well on it and some feel awful, can't quite remember what he did say fully.

I started taking T3 along with my T4 in August and must admit I haven't felt brilliant all the time, so I am going to work with him to see if I can get on a dose of just Levo that I feel comfortable on, so have stopped the T3 as of today and he said for me to take 150mcg Levo for 4 weeks and then have a blood test. But I had a blood test last week and my TSH was unmeasurable, so I lowered it to 125mcg, which I told him about and in the end he's put up me up to 150mcg for these next 4 weeks. Oh well, onward and upward as they say...