Hi there I have got an appointment with my MP regarding inability to obtain T3 on the NHS, could someone point me in the right direction regarding documentation about the prices of T3 and the increase in price in recent years.
I have tried searching for the info about the CMA ( I think that's it!) but am unable to locate it here.
I know there has been some department looking to the excessive pricing in the past and the fact that two pharmaceutical companies have inflated the prices to the extent that patients are being denied T3. I believe it has not been resolved, and it seems to have taken a back seat at the moment but any further information would be much appreciated.
Many thanks , in advance.
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Thanks Helvella, those are both brilliant, is there any further information regarding the lack of competition for T3, I know something was being looked into recently.
Look for PAR documents. They are issued shortly before a new product comes to market. You will be able to see when Morningside and Teva products were approved.
i took this issue to my former mp who raised it with the competition authority to be considered as part of their investigation into the manufacturer of t3. i received a reply from them which i’m happy to forward to you if you inbox me your email
here is the link ( very hard to find it i agree!!). you will note the manufacturer tried to stop the investigation by taking the CMA to the high court. they lost that battle, however the investigation is still ongoing. i believe the more of us who bring this to the attention of our MP, the press, GP etc the better!
A good idea and hope MP will take notice. I'm going to make an appointment with mine as I didn't get a response to my communication a number of months ago.,
Yes I get cynomel in France €3.2 per 25mcg x 30 packet and my friend in Athens just picked up 10 box's of 25mcg x 30 €1.7 a packet. I asked him to see if they were still available there he also got me 5 box's of 10mg hydrocortisone €2 each. I like to keep a good stash in case of emergency.
My mp Jon Ashworth shadow health secretary helped get my T3 reinstated on nhs and is well aware of the scandal but has hit a wall of silence. I asked him for the name who actually signed to agree to the prices, it should be in the public domain but of course it isn't.
The house of Lords have discussed it but nothing actually done.
Tbh very few politicians care as it's tax payers money they throw at the nhs, poor management, abuse of the system, over prescribing of cheap drugs like paracetamol that you can buy at supermarket 16p cost nhs £5, Tony Blair sold off the assets of nhs it is a failed system and totally corupt.
It's not free we pay national insurance. I am now in france the difference in healthcare is like night and day. I have basic healthcare free but pay €50 a month for private health which covers hospital stays, all meds, dentist, glasses, Dr appts, blood tests, private consultants, home care if I need it when I get old, it covers everything and we don't have waiting lists here. €50 is prob similar to what most pay self sourcing in uk. The nhs is a disgrace compared to french system.
That comparison with France is shocking, I suspect that private health cover here would cost much more, especially if you have an existing condition, which wouldn't be covered anyway.
I saw my endo first privately £175.00 for an hour. It was money well spent as it gave us time to go through everything. He then put me on his NHS list where it's 5 min appts. Private health is extremely expensive in uk and not much better than nhs treatment. I have met a lot of brits who have complicated health problems who moved to france because of the excellent care. In uk Dr's get paid a huge lump sum every year even if they don't see patients. In France they get paid per appt, if they are no good customers don't go back, so they don't get paid. This system would stop uk gp fraud, all those 100's of 'ghost patients' and they would be less inclined to upset patients by not listening.
Well done for raising this crazy issue! Why are the NHS not following ANY procurement, it's standard business practice for large businesses to investigate and select vendors, and negotiate best value before agreeing supply, the huge T3 price hike would never have happened if the NHS was run effectively.
My GP knows I source my own T3 from Mexico, and (after a battle) include T3 results in blood tests, but still panic over my suppressed (irrelevant ) low TSH levels. You could also quote my GP to your MP - "I don't know much about thyroid conditions" - typical of the lack of training the medical profession receive on our disease. With thyroid sufferers being about 80% females I believe it's discrimination, if it were 80% males fatigued by Hypothyroidism, suffering memory loss, anxiety etc etc and time off work you bet the GP training would include plenty of Thyroid treatment, and medical research would be a priority, instead women are often fobbed off even without diagnosis for many years, with symptoms put down to "women's issues"!! ... Rant over 😄
similar to what a scottish MP said about this in their parliament! outrageous
i believe the nhs can’t buy t3 except under the agreement with this company ( which is crazy in itself and the reason they now over charge nhs by hundreds), that’s part of the CMA investigation i think - why they are exploiting the nhs!
Agree with everything you have said, I have asked all the appropriate questions regarding my condition and the Endo's and their underlings seem to be inadequately trained, they know loads about Diabetes mind you!!
I am beginning to think that all endocrinologists should have their thyroids removed and then be denied any treatment other than levothyroxine just so they can empathise fully with their patients, I'm jesting of course!!
There's so much information about diabetes as you say, my former partner developed type 1 later in life which is unusual. I managed to get NHS FT3 blood test results included by asking the GP to put that I take Triiodothyronine as well as Levothyroxine on the lab request form, it's worked well so far because when the GP called (as I expected) to say my TSH was too low and I was over medicated, I pointed out that my FT4 was near the bottom of the "normal" range and my FT3 only midway, so it was obviously not true that I was overmedicated or their own blood test would show over range results! LOL that's when she admitted she didn't know much about thyroid conditions - I suggested she should do some research - in a polite way 😁
When I last attended the endocrine clinic you would think they had never heard of thyroid problems, there were posters everywhere about diabetes, its complications and lots of info on how to manage the condition, but not one single thing about either hypo or hyperthyroidism.
I have come to the conclusion that it reflects a wider lack of knowledge and interest in the condition within the medical fraternity.
Thyroid training is half a day out of all those years of training. I was paid by nhs and teaching university to do talks to final year med students about my tt and the nhs complete lack of knowledge. They had completed 4 years and utterly clueless and yet ready to become jnr Dr's. Don't get me started on diabetes most type 2 could be reversed by diet and exercise but Dr's just dish out meds to them. Imagine the public outcry if they started telling diabetics to source their own insulin.
Sorry I can’t answer your question but I can’t can’t manage to get a T3 blood test done as they won’t fund it here. Did you go privately can I ask? Please x
Hi Otto, I have mostly been doing all my own blood tests, the GP's won't do them because I'm under the hospital and the hospital are hopeless sadly, it usually takes them six weeks to even report the results, which is useless.
I use Medichecks and periodically get everything tested Vitamins / antibodies/ full thyroid function tests ( free T4/T3/ TSH), I try and order the tests when they are on special offer (Thyroid Thursdays) they also have more basic tests which include just thyroid function they too are sometimes on special offer, however if you are just starting out on your thyroid journey it would probably be advised to get everything tested so you have a baseline which can work on.
Antibodies can fluctuate but if you have a positive antibody test result it indicates you have Hashimoto's ( sometimes referred to as autoimmune thyroid disease). You don't need to re- test antibodies if you get a positive result because they can change, unless you are going gluten free and want to see if no gluten affects your antibodies.
Also even if you get a negative antibody result this doesn't rule out Hashimoto's because some people never get raised antibodies.
My GP initially requested Free T4, T3 TSH and antibodies and the only thing that got tested was T4 and TSH despite the GP requesting it, so I think the labs are over-ruling the GP's ridiculous I know.
My own decision to test privately was so that I could see the whole picture and not have to rely on the totally inadequate testing the NHS provides.
Hi thanks for your reply. The blood tests are not done where I live due to cuts in funding. My GP did say if the TSH or T4 was out then they would automatically test T3 while they still had the blood but I doubt it tbh. The Trust definitely overrule the GP. I also have RA & they refused to do CRP always only doing the cheaper ESR test. That has however changed as CRP is more accurate. I’m not just starting with Hypothyroidism I had an adenoma removed several years ago from the left lobe & my thyroid worked for a while but then stopped. That was 25 years ago. Just recently my TSH levels are up & down & dose keeps being altered. Also T4 at 22. & Just trying to understand things more. I seem to have a mental block when it comes to understanding thyroid issues for some reason.
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