T3: I've just had a call from one of the practice... - Thyroid UK

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T3

RubyTuesday profile image
16 Replies

I've just had a call from one of the practice GP's to see how I am getting on with my T3/T4 combination regime and given a warning that the powers that be are thinking about taking T3 off the shelves as they do not see any improvements in thyroid test results!

I told her I thought this was wrong since, in my opinion, many people are benefiting from its use, but she seemed to think it was outside of their control.

Is this true, or is it the GP practice using a smoke screen in order to stop having to prescribe it to people.

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RubyTuesday profile image
RubyTuesday
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16 Replies

Hello, I don't know how good a relationship you have with your GP, but would it be possible to ask for a copy of the letter or directive which states this information. I think there are a lot of people who would like to see it. Jane x

shaws profile image
shawsAdministrator

I think it is scandalous as the addition of T3 to my T4 made an incredible difference. I have since moved on to NDT but in no-way could I ever take levothyroxine again. I was more ill on it than before diagnosis (which was bad enough).

It comes down to cost obviously and I really do not know why T3 is so expensive. Is it a rip-off?

Let's face it the British Thyroid Association and the Royal College of Physicians are positive that levothyroxine is more than adequate for us. Is it because more women than men have thyroid troubles that we have to shut up and put up despite saying we are still unwell. We cannot have a life.

This is their statement re Armour or T4/T4 despite a rebuttal from Dr Lowe regarding their 'false statements'.

british-thyroid-association...

Their have been more recalls of levothyroxine because of inconsistencies - which is not found out until complaints are eventually correlated with. the resultant continuing suffering not only of the patients but their worried families.

This is an excerpt from Dr Lowe:-

Now, to address your rheumatologist’s assertion that T3 is dangerous, and his implication that amitriptyline is not. I think the best way to reply to him is to quote publications that are available to him. In the USA, when patients get their prescriptions filled for T3 (usually the brand Cytomel), the pharmacist usually gives them a leaflet on the product. The leaflet contains the following statement:

"NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with the proper use of this medicine." (Medi-Span, Inc.: Database Version 97.2. Data © 1997.)

This statement makes a fact perfectly clear: When used sensibly, T3 is extraordinarily safe among prescribed drugs. When I say extraordinarily safe, I’m comparing T3 with drugs such as the amitriptyline which your rheumatologist prescribes for you. Below is a list of potential harmful effects of amitriptyline. This list comes from the Physician’s

helvella profile image
helvellaAdministratorThyroid UK

It would be interesting to know who he means by "the powers that be".

The MHRA?

The Clinical Commissioning Group?

Some other group or body?

Unless we know who is that is, we don't stand a chance of arguing our corner.

Rod

rosetrees profile image
rosetrees

Is this an attempt to undermine the Scottish Parliament petition?

shaws profile image
shawsAdministrator

I think it may be to do with the hue and cry when no T3 could be found for patients a few weeks ago. It may have alerted them to how many are being prescribed T3 or the addition of T3 to T4.

I believe some sent letters of complaint went to the Health Secretary etc.

tegz profile image
tegz in reply to shaws

Scramble for a cover-up, methinks....

Nice to see the windows starting to rattle around the upper echelons!

RubyTuesday profile image
RubyTuesday

I am trying to remember exactly who she said it was and I think it was the Pharmacological Council? No, I don't have a particularly good relationship with any of the doctors at the practice; in fact, I have little time for my own GP, who I found to be disinterested in what I, his patient, had to say. And I know he won't have a conscience using whatever means he has to hand to stop the T3, since he didn't want to prescribe me it in the first place.

tegz profile image
tegz in reply to RubyTuesday

Sorry to hear you get this treatment.

Matters of 'state' apart [and their hands are probably well tied] the Dr should remember his calling and treat you well.

I was in A&E y/d and had caring treatment from a busy Dr who listened and did her job well. I was [& am] in some pain [cartilege] -so appreciated it.

GPs seem to be in a different class these days.

Going like the City, maybe chasing too much money-or burnout?

I'm sure there's some good ones about - but it's a lottery.

sandi profile image
sandi in reply to tegz

A lottery where they're winning the money!

mickstability profile image
mickstability in reply to RubyTuesday

When I was on T4 I would have read this without comment. Now I'm on T3 I am pleased to point out with all good wishes that your GP is uninterested, not disinterested.

Jane104 profile image
Jane104

If "they" are not seeing any improvement with using T3, in my opinion, it's because they don't know how to dose it properly and don't know how to interpret the blood tests - nigh on impossible when taking T3. They're only interested in the numbers, which will never add up. They're not looking at the massive improvements in individual patients' health.

I'm with Shaws, I wouldn't go back on synthetic levothyroxine now for anything. I couldn't actually tolerate something in the T3 tablets but it did make a huge difference mentally. NDT has been almost miraculous.

Glynisrose profile image
Glynisrose

My GP keeps asking me to go for blood tests but I refuse. They can only do TSH not T3 or T4. I tell the GP that I am not on synthetic thyroxin and frankly they wouldn't understand the results!!

I would reckon the doctor is bulling you so as not to prescribe T3!!

Well,I have it in writing from my endo that he has found that some people do better with the addition of T3.He wouldn't be able to backtrack on that! The medical profession is crazy! I really hope you get your needs sorted out.x

vajra profile image
vajra

Our lot over here (ireland) tend to follow UK practice, and there's definite signs that T3 is not popular with the system.

It was taken off the list of licensed meds, although it's still available from importers; and they won't do T3 tests for GPs any more. Only for endos.

It'd be intersting (and is important) to find out what's happening - given that it'd be a total disaster for thee likes of myself if T3 was no linger available.

It's probably something we need to be campaigning for.

The position is worsened over here by the fact that it's illegal to import meds for personal use, even with a prescription...

ian

vajra profile image
vajra in reply to vajra

PS the absolutely incredible part about the issue is that hardly a week goes by that there isn't another research paper showing the benefit of the stuff. Usually from those countries mind you where the controllers seem to have less sway.

Another case of de-facto practice igoring the latest research???

tegz profile image
tegz

When the cover up operations start to become obvious by their desperation and inconsistencies - it's usually near the end of the game.

Not everyone does badly on Levo, nor is T3 easy to administer [by my reading up on it] but without adequate studies and transparency the best of both can't be ascertained and the establishment seem to be moving to the defensive.

When you check back on the witchunts with Drs S, D-P etc I smell a big rat lurking!

*** A campaign is probably needed - as no vested interest ever gives up control readily.

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