The Weirdest Endo Appointment Ever ( with a positive ending!)!

[Fluffysheep]

This morning I had the strangest ever appointment with my endocrinologist. Before I tell you what happened, I need to give a little bit of background around my previous appointments with him!

First appointment with him was around a year ago. I was taking self-sourced T3 alongside levothyroxine. He was very unhappy with this, but acknowledged what I was telling him that it made me feel better than being on just levothyroxine. He said he would write to my GP to ask them to prescribe it, but that he wasn't allowed to. Wouldn't listen when I told him this wasn't the NHS protocol, and it had to come from him for 3 months. No surprise, my GP couldn't prescribe it! I made a complaint via PALS about him.

Second appointment was in December. No idea if he knew about the complaint or not. Continued to tell me that my supressed TSH would give me osteoporosis and atrial fibrillation. T3 testing apparently of no importance at all. However, he did say that he was going to ask the hospital to prescribe T3 medication for me, as I'd convinced him that I felt better on it, and said he would update me. I heard nothing from him, so phoned the secretary about 3 weeks ago asking for an update, and received an appointment for today.

Third appointment today. He comes to get me from the waiting room, and tells me he has good news, the hospital have agreed to prescribe me T3 medication for 3 months. The look on my face must have been a picture, I was completely shocked! He has only been able to get me 20mcg a day (I currently take 37.5mcg a day, and am looking to tinker with my dose as I want to decrease my levo as I don't think it does anything for me, then increase T3 if necessary).

After giving me this shocking news, I then got the usual lecture about my TSH being supressed, need to get it up, he hopes I consider taking just the 20mcg of T3 a day as an experiment, but understands if I don't! He still doesn't think T3 testing is important at all, only TSH, which kind of makes the fact he has given me a prescription even more bizarre!

I am still in shock to be honest, can't believe I walked out of hospital with a 3 month prescription. He's going to write to the GP to say they need to prescribe it after that (they did say last year they would be happy to if they were allowed, so lets hope that is still the case).

Has anyone had a stranger experience than that?!!

[Buddy195 Administrator]

Well done Fluffysheep for holding your ground. I’m delighted you have a positive result in the T3 prescription! 👍

[Fluffysheep in reply to Buddy195]

Thanks so much. Am still completely gobsmacked!!

[tattybogle]

i'm not surprised by it TBH . they are under a lot of pressure to preferably not prescribe it at all, and discourage/ block as many people as possible for as long as possible..... hoping most requests will go away and stay away ..... but if pushed through the right hoops, and they can't find a good enough reason to refuse it, and their CCG does actually allow it at all for 'new' patients etc etc , then they do eventually have to follow the process, and give a trial. The 20mcg is probably all he's allowed to give by his CCG at the moment, some have policies of a limit on maximum amount .

Even if his personal view was he's a huge fan of T3 and not overly concerned by low TSH.. he would still be obliged according to the liothyronnine guidelines to give you 'the stern warning talk' about low TSH.

So, well done for pushing the right buttons in the right order to win the prize

[Sparklingsunshine]

Hi

Do you reckon his office was being bugged by the powers that be and he had to toe the official party line?

[serenfach]

My endo on seeing I was taking T3

"who on earth prescribed you that?"

You did

Oh

[Fluffysheep in reply to serenfach]

Ha ha, that's a bit mad!