Angry at British Thyroid Association

[Kandahar]

The way BTA talks you would think that there were very few people who can’t turn levo to lio! Does anyone have any idea of how many of us are there in the UK, please?

[SlowDragon Administrator]

Well there’s roughly 2 million people in the uk on levothyroxine

By medics own admission approximately 10% don’t do well on just levothyroxine ...so that’s 200,000 people

Many Thyroid groups suggest it’s more like 15-20%

So that would be 300,000-400,000 people

There are approx 6,000 prescribed T3 on NHS....down from 13,000

[Kandahar]

So, if we all rose up and stormed Parliament, we might...

Sorry for being facetious, but what’s happening to those who don’t know about sourcing overseas and what are we to do after we leave the EU? Is any movement building?

[Marz in reply to Kandahar]

You may like to ask them - that as T3 is very rarely tested in the NHS how would they know most convert T4 into T3 ... 😎

[Lora7again in reply to Kandahar]

I think you would be wasting your time to even try storming Parliament... sorry to be so negative but thyroid disease is not taken seriously by the NHS. I tried to get my MP to put it to Matt Hancock before the coronavirus and got nowhere... you can read the letter I got in response on my profile page if you scroll down my threads.

[SlowDragon Administrator in reply to Kandahar]

Lots of questions already asked in Parliament

theyworkforyou.com/search/?...

Some CCG areas choose not to follow National Guidelines

[Hidden in reply to Kandahar]

I would be with you on that one, get a few bulldozers and push the lot into the Thames. Unfortunately I was overdosed for two years and now have heart failure, although doc denies they are linked. I agree that our thyroid condition is not taken seriously in the uk. I have been asking for more testing with a view to making sure I am correctly dosed but I am told they only do one test here and it is more than enough. I am also told that the synthetic stuff is fine for me even though it is contra indicated for patients with heard failure. I even had a doctor tell me to stop reading these articles and not to be stupid. I have also had treatment for my heart failure withdrawn because I asked too many questions. What sort of a country are we living in?

[Lora7again in reply to Hidden]

Unfortunately I have heard stories like yours time and time again and not just in the UK. This is a world wide problem and I don't know what we can do to educate doctors because they really are not interested. I actually watched my GP's eyes glaze over when I tried to show him something I had printed off about thyroid disease. He then admitted he knew nothing about it and had to stick to NHS guidelines or he would be struck off.

My story is not as bad as yours but you can read it on my profile page if you are interested.

[Kandahar]

Not serious about storming, but will be raising subject with local MP who is a friend. Don’t hold

Your breath, though!

[ffranny]

I think Dr Toft said it was in the region of 25% couldnt convert properly.

[Legoparis]

I have been thinking the same /a good start would be entitlement to full Thyroid blood tests plus all relevant minerals and vitamins on NHS -fed up paying all the time

Second might be Functional/ holistic GPS

As for Parliament probably better to tackle BBC breakfast ( who seem to be trying to run the country) I’m sure some of their staff must have Thyroid issues?

I wish you luck with MP friend

But I agree that getting a more visible idea of the size of the problem in UK would be good

For my part I seem to convert but on an erratic basis and biggest issue is weight control -problem is my GP is a lot bigger than me and doesn’t seem bothered!

[syrahrose]

How about someone contacts Dr Mosley with some facts and figures? He’s good at investigating medical matters on television. We could all write in support! I think it is time we made some noise about our problems or they will never be resolved.

[Marz in reply to syrahrose]

He follows guidelines - discusses the Thyroid but manages not to mention T3 - sigh !

[syrahrose in reply to Marz]

Oh that’s a shame!! Aren’t there ANY doctors who also suffer with thyroid and would be willing to fight for the right to receive proper medication on the NHS?

[Marz in reply to syrahrose]

Probably there are - but if they only test the TSH - they remain undiagnosed !!

You could try and contact him and see what happens 🌻

[syrahrose in reply to Marz]

I rather hoped the British Thyroid Assoc be more pro active but nothing new has happened! I just might write to him!!

[Marz in reply to syrahrose]

I have been a member here since 2011 and rarely read about positive action from these 'associations '.

[syrahrose in reply to Marz]

Perhaps because they are not the ones suffering?

[Marz in reply to syrahrose]

More to do with ignoring up to date research ...

[Kandahar in reply to Marz]

How do you mean? Has we tackled Theodore in depth?

[Kandahar in reply to Kandahar]

Or even Thyroid!! The joys of predictive Tex!

[Hidden in reply to Kandahar]

And who is Tex? He has a lot to answer for I think!!!! 🤣🤣🤣🤣

[Marz in reply to Kandahar]

Who is Theodore ?

[Marz in reply to Marz]

OK try him and see !

[SlowDragon Administrator in reply to syrahrose]

He’s already done a 15minute slot on Trust me I’m a Doctor .....interviewed Prof Toft ...and lots of uk patients getting T3 from abroad

Summary article here

bbc.co.uk/news/health-38895877

[Kandahar in reply to SlowDragon]

Interesting, Slowdragon, but didn’t go anywhere really, did it? Trying link to Facebook page but, so far, not got anywhere.

[Ashanat]

I wonder if the likes of medichecks could supply anonymous data on how many of us pay for private thyroid monitoring because NHS Wong support us?

[HashiFedUp]

Dr Skinner estimated that about 40-45% of thyroid patients didn’t recover fully on just T4. So thats potentially almost a million!

[JoJo891]

Well, I'm one who cannot convert T4 to T3. Levo does absolutely nothing for me. I've tried dithyron (T4 with a bit of T3) but the same - nothing, and I still felt awful. Liothyronine alone is what works for me. I have to source it from abroad as there is nil chance of getting it here.

[Shellbell210677]

I finally managed to get prescribed T3 on the NHS just last week. I had to wait 9 months for my endo referral mind you, and I’ve been trying on and off for 10 years to get T3 from official routes.... I’ve tried everything from NDT to T3 sources overseas but I’m dubious about the potency as there’s been so many manufacturing issues in recent years.

My endo said that there is recent data to suggest that T3 is effective so she agreed to trial me on it.

My last bloody tests at the doc I requested that they do my R & F numbers and not just my TSH which they agreed to, and my endo agreed that although my TSH is suppressed my T3 levels are too low hence why she is willing to trial.

I’m in Southampton.

[Hidden in reply to Shellbell210677]

Congratulations!

By the way, what's R & F?

[Shellbell210677 in reply to Hidden]

Reverse and Free T3 and T4

[SlowDragon Administrator in reply to Shellbell210677]

Was this endocrinologist from the Thyroid UK list of recommended thyroid specialist endocrinologists?

If not ...please email,Dionne at Thyroid UK and get their name added to the list

thyroiduk.org/contact-us/

[Shellbell210677 in reply to SlowDragon]

It wasn’t a private consult, my GP referred me to Dr Browns clinic at the Southampton General Hospital. I don’t know the name of the Endocrinologist, it was a phone consultation due to COVID-19, but I will know as soon as I receive a copy of the letter she writes to the GP with my prescription and follow up appointment.

Unfortunately, I don’t know if she takes private patients.

[SlowDragon Administrator in reply to Shellbell210677]

Especially helpful to have NHS recommendations on the list

Don't name her on her ...but do please email Dionne with info