Help re endo not increasing T3

[DandyButch]

I should have had an appointment today with my endocrinologist, but yesterday it was cancelled. This appointment was due to my blood test results, which she already knew, from April, and a reply from the psychiatry dept regarding dosing T3 for mental health.

The psychiatrist had replied that whilst he had not used it, that yes, it can be used to treat me.

Today, I received a copy of a letter my endo wrote to my GP on 10th June 2024, confirming this info, and stating that due to my blood test results, she will maintain the existing dose. NOT increase it.

She goes on about cardiovascular complications such as arrhythmia or ischaemic heart disease, and the need to maybe REDUCE my current dosage.

I am so extremely disappointed and upset.

I was counting on an increase because I have been using a slightly higher dose, without her knowledge, and again have seen an improvement, slow but sure.

I have sent the GP a note, and phoned the endocrinology dept to leave a message for the endo.

I WANT TO GET BETTER.

Does anyone know what I can do, if anything.

I take supplements as recommended on this forum.

I am not vegan or vegetarian.

I do not have coeliac disease.

All protocols followed for blood tests.

TIA

[TiggerMe]

Irritating isn't it when they just won't listen...

I would continue with the dose that works for you and get your prescription requests in early as you can to make the most of your NHS supply and if needs be purchase some extra

[DandyButch in reply to TiggerMe]

Hello,Thankyou for your reply. Whilst your suggestion regarding getting prescription early, that is OK with hospital, but, if I get discharged back to GP, not so easy, coz they are extremely rigid with repeats, only doing them max 7 days before you run out. If you try to get it sooner, they tell you to request later.

You are right, I may well have to source some privately.

It is all so difficult, especially when I am struggling.

TVM

[TiggerMe in reply to DandyButch]

Don't let them keep you ill, sometimes you can get an early request past if you say you are going on holiday etc 😏

Luckily it isn't that expensive to buy if needs be

[DandyButch in reply to TiggerMe]

Trouble is they know I am housebound atm, so can't use that one.Any other suggestions?

Not been here before.

[TiggerMe in reply to DandyButch]

Perhaps a little white lie that you are taking yourself off for some respite care (out of the area) or off to stay with family?

Or perhaps you had a funny five minutes and have lost them

[DandyButch in reply to TiggerMe]

I get funny five minutes regularly so, no need to lie!!!!

[Brightness14]

Why not buy T3 online I do it's easy 200 tablets x 25mcg for about £46. Tiromel.

[DandyButch]

Thankyou Brightness14, I may well need to.

[serenfach]

Oh dear, the packet fell in the sink while you were brushing your teeth, so please could you have a new packet? (this only works once but may give you a bit of breathing space).

Your Endo is out of date. Research has shown that very low or very very high levels of T3 affect the heart. Have a read here - thyroidpatients.ca/2018/07/...

Print it off and send to your Endo. You do not have to say you sent it. It is a real shame with the money they earn that they do not keep up to date with the research.

[DandyButch in reply to serenfach]

Hi serenfach, I cannot send anything to the endo directly. Only through the department of endocrinology verbally, or via an email connection which they provide as a one off. And you don't get a copy of it.Don't be silly about endocrinologists keeping up to date. I already had a lecture on how many years she'd trained to be where she is now. I.e. she knows, no-one else does.

She considers me to be fully medicated now, and is governed by NHS and NICE guidelines.

She says she cannot increase due to blood test results.

However, thankyou for your help.

I will not give in, or give up. Something is not right regardless of the blood test results.