Thyroid Trust: Have just read the following post... - Thyroid UK

Thyroid UK

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Thyroid Trust

Airmed
Airmed

Have just read the following post on Twitter from the Thyroid Trust. Music to my ears. Very well done to all concerned:-

we've just completed an important piece of work with thyroid specialists, British Thyroid Association, & other thyroid patient organisations, to evidence that national guidance is being misinterpreted all over the NHS and harm is being done to thyroid patients. Time for change.

20 Replies

Wow!

shaws
shawsAdministrator

I hope "Time for Change' means that we will be given the thyroid hormones and options to levothyroxine if it doesn't help us recover our health.

I am also very dubious about their proposal to " to evidence that national guidance is being misinterpreted all over the NHS and harm is being done to thyroid patients. "

That is due to the British Thyroid Association removing NDT (natural dessicated thyroid hormones) from being prescribed on the NHS and which suited many, many patients. They also clarified this with False Statements and did not respond to the scientist who made a Rebuttal to them as follow. He never did get a response from them despite three yearly reminders before his death. Thousands recover on NDT which is made from pigs thyroid glands and in use, safely, since 1892 in various forms and contain all of the hormones a healthy gland would.

thyroidscience.com/Criticis...

Oh! and also they removed liothyronine (T3) - the only Active Thyroid Hormone which restored life in many hypo patients - without notice and they did have a fabulous excuse - cost - due to the Pharma Companies increasing T3 exorbitantly. The greatest downfall of this, is it was done without warning and thousands who were being prescribed were instantly without their life-giving thyroid hormone. Can they possibly imagine the shock of being denied the hormone that has restored life in your body and enabled you to have 'normal health'.

So much for a caring profession who considers their patients' wellbeing by removing both NDT and T3 and leaving only levothyroxine, and thousands of patients do not improve their health one iota (I am one) on levothyroxine. I think also that most of the members of Healthunlocked are ones who have been left high-dry with no one to turn too in their desperate search to recover their health. The forum is equivalent to saving a person who's drowning.

T4 doesn't suit all sufferers. Despite Research showing that a number of patients need T3 added to T4 means patients are having to source their own as doctor wont prescribe now. Some cannot and do not tolerate levothyroxine at all. Other patients only recover on T3 alone.

We, mainly woman, who have challenges with hormones throughout our lives seem not to have any input into these decisions made by people who do not have hypothyroidism/hashimotos and have no idea of the consequences of their ACTS on patients lives/work/wellbeing.

Unnecessary suffering.

MaisieGray
MaisieGray in reply to shaws

Why would you be very dubious about their proposal to to evidence that national guidance is being misinterpreted all over the NHS and harm is being done to thyroid patients? It's a very simple process albeit on a large scale, to collate first hand evidence from patients so affected, where national policy is most definitely and very obviously being countermanded and ignored at CCG and GP level. As for harm done, in my case my FT3 plummeted from top quartile to 0.01 above the bottom of the range. Such experiences and more, have been collated to provide the evidence. And more than incidentally, the very (bizarre) fact that CCGs are allowed to create their own formularies indicates that they are excluding nationally accepted drugs which are otherwise licensed for use and included in the BNF.

Edited to add: Other evidence collated includes hard copies of CCG and other associated/sub groups meeting minutes recording where they have debated (often erroneous "facts") and voted on their decisions to create their own rules; plus data from various independent quality & satisfaction monitoring bodies evidencing that they've not only been told by CCGs that they are in effect doing their own thing but have seen for themselves that they are. I'm sure there's other evidence that I've either forgotten about or am unaware of.

Airmed
Airmed in reply to MaisieGray

The CCG are on my case as I write (do have a plan B though). My Gp who has happily been prescribing for the last 6 years phoned me the other day. Apparently the endo of my choice who I opted to see clearly doesn’t want to see me. During a lively discussion for want of a better word she said she had concerns about prescribing unlicensed meds, it was nothing to do with CCG or money. She was referring to T3. Immediately put her straight on that one! How stupid does she think I am!

MaisieGray
MaisieGray in reply to Airmed

Mine was withdrawn just like that <<clicks fingers>> after 9 years of my GP prescribing it. My GP said "someone from the CCG" happened to notice I was being prescribed it and told him he had to stop. Well of course, the CCG person simply didn't happen on that piece of information, they were studying the prescribing data for the very purpose of tracking down the wilful GPs who weren't towing the line; so the message is very clear - CCGs are not only deliberately ignoring NHSEngland's policy but are wilfully tracking down patients to enforce their own 'rules'.

Airmed
Airmed in reply to MaisieGray

Have you got it back yet? Are you on T3 only? I have to have bloods done next week two hours after taking T3😂. Not sure what’s happening after that.

humanbean
humanbean in reply to Airmed

I hope you don't intend to follow that instruction!

Airmed
Airmed in reply to humanbean

In a word - No

humanbean
humanbean in reply to Airmed

Hooray!

shaws
shawsAdministrator in reply to Airmed

Very well anticipated. I doubt many really know what T3 actually does in our body. I'm glad you put her right.

Airmed
Airmed in reply to shaws

Not sure about that after today. Saw the nurse for blood draw and asked what they were testing for. First thing she said, which threw me I have to say, “was have you taken your meds at least an hour before test”.”Yes” I replied, I knew what she meant but I didn’t lie! She said TSH and I asked what else. “T4” she replied. I asked why they were testing for T4 since I don’t have a thyroid gland and nor do I take Levothyroxine. The lab probably won’t test for T3 unless you state on paperwork that I take T3 only and we were wasting each other’s time. She suggested we cancel this appointment and make another. I suggested we carry on and she talks to the GP. It would be laughable if it wasn’t so annoying. Well let’s wait and see.🤨

shaws
shawsAdministrator in reply to Airmed

What a difference a bit of knowledge makes with us now knowing what the difference is between an Active thyroid hormone and an 'inactive' one. :)

UrsaP
UrsaP in reply to Airmed

Oh dear G! the rubbish they come out with. Shows their expertise, or serious lack of it. By vilifying T3 they are frightening the Dr's into not prescribing it and deprescribing it, oh, there I go again, not suppose to be using the word deprescribe as us patients are misinterpreting it as taking meds off us!! [wonder why] It is referred to as 'poly pharmacy??' Lack of pharmacy may be nearer the mark!

shaws
shawsAdministrator in reply to MaisieGray

When I responded I was thinking mainly about the BTA regulations and not the Thyroid Trust so apologise.

UrsaP
UrsaP in reply to shaws

I think the good thing with all this shaws is that thyroid groups are collaborate on this. Hopefully that will continue. There are just far too many patients for us all to be ignored if we all stand together that is key. We all want the same thing. We want this mess sorting and we want Thyroid patients to be taken seriously and treated with what they need.

I know from being in ITT, and from being on here that there are an awful lot of very clever and capable thyroid patients who are not going to let this go. It will be a battle but whoever is behind this situation, and I do think it has been in orchestration for many years, has very much underestimated us all.

I still think that the price hiking was a ploy to have T3 pushed off the market. Big question is why - what are they scared we will find out if we continue to use it - that it is effective, i suspect. And maybe that T4, failings have been keeping/making at least some if not all even more ill!

How much did they know about T3 when developing T4? Clearly T2 , T1 were not considered. What are the failings in the development testing etc of T4?

shaws
shawsAdministrator in reply to UrsaP

I positively agree with you that collectively we are stronger re the withdrawal of T3.

NDT also being withdrawn earlier due to False Statements made about it.

When we, the patients, first heard that there were a couple of new suppliers of T3, we hoped against hope that the cost would be reasonable. How shocked we were when there was no difference between any of the three.

For the Associations - to first to withdraw NDT and making False Statement about it and on which many also recovered and has been used safely since 1892 . Then to also withdraw T3 without notice and the disgraceful 'cold turkey' withdarwal of T3 leaving patients more than desperate.

How much has Big Pharma paid endocrinologists/doctors worldwide to push the introduction of levothyroxine plus the blood tests? You don't need to be a scientific genius to sense which tablet may be best (or at least you could trial it) - a tablet containing T4 alone against one which has T4, T3, T2, T1 and calcitonin and has saved lives since 1892. Before that people died a terrible death by myxedema coma.

Dr Skinner, Dr Lowe and Dr Peatfield were doctors who were concerned about the loss of skills by doctors who were not taught clinical signs of patients. I do hope Dr Skinner's (RIP) staff are able to produce their book about all of their scientific studies whilst dealing with the waifs and strays from the NHS by being undiagnosed/untreated.

Dr Skinner was so concerned about patients remaining undiagnosed/unmedicated that he arranged a Conference and sent all Endocrinologists an invite One by one they refused and the last one the night before. He wanted to discuss the Parlous Situation of patients of who remained but with clear clinical symptoms.

Dr Skinner had 10,000 testimonials sent to the GMC as he was called before them about three times, I believe, but it certainly wasn't his patients that complained. So who did the complaining? He may not have resolved everyone but he, as well as the other two doctors knew clinical symptoms.

The strain that Dr Skinner had to undergo must have been immense but he was very courageous in that he knew the guidelines were wrong and could lead patients to have unnecessary consequences. He died suddenly.

thyroidscience.com/Criticis...

If you've not read Tears Behind Closed Doors - it is worth a read and is shocking also.

thyroiduk.org.uk/tuk/tuk_sh...

UrsaP
UrsaP in reply to shaws

HI shaws, yes, I did follow what was happening, at the time with the late Dr Skinner. And have heard that about the conference he called. I remember him dying so suddenly, a great loss. Makes me wonder, who is paying off the Endos? I fear they don't see how they are actually destroying their own authority as patient became more aware, and lose trust in them.

I did follow some of the things that were happening to Dr Skinner, wasn't he vindicated and allowed to continue to practice? I also followed some of what had happened to Dr P too. Medical madness at it's beast. I was at that initial real learning stage, having just found that there was all this information out there. TG for computers and internet. For so many years it was not so accessible.

I remember buying a tiny info book on thryoid at a chemist counter, as I was just astounded to find anything in print. This must have been 90's sometime. Needless to say it was NHS based and hence limited basic and no real information within.

The internet opened up access to so much knowledge, even finding books, albeit usually American, used to thrill me, I was so desperate to find any info. I did buy and read quite a few - Lowe's and others. I learnt so much more. Peatfield's was my life savour. But there is so much more to know. Spend half my life now reading articles.

I did a degree, later in life, and whilst I had access to journals and such, I did try to find info on thyroid. I vaguely remember reading an article that a lady presented to a group - possibly Leeds Uni, but not sure now, so long ago. The article included an interview she had with the two Dr's who had developed and introduced the TSH level, and she pointed out that they told her that it was never meant to be a diagnostic tool in it's own right, that it was meant to be used in conjunction with considerations for clinical symptoms. I do wish I could find this now. Poss saved to an old laptop, and long lost. But the article must still be there, somewhere.

Isn't Sarah Myhill the most reported practitioner? And wasn't one of the complained against her that her patients were not complaining about her? Crazy! I wonder what university medical department the person who made that complaint heads up!!

This is a battle. We are up against bp and far too many corrupt or just plain stupid but sadly powerful organisations and people but we just need one well aimed stone! I think, however many of them, there is likely to be many more of us.

Unless they find a way to totally eradicate NDT and T3, and render us all too ill to live, Patients are on the rise.

Do you know anything about the DTE - I know Amour had NDT put through the licensing procedures in US, and @diogenes did mention that NDT now contains some synthetic, is that why, did they have to add synthetics to put it through?

I also remember reading, all too often, that there was no evidence of benefit of NDT over T4. Which is echoed all too often in the 'No evidence of superiority of benefit of T3 over T4'. In both cases they omit to mention that there was also no evidence of benefit of T4 over NDT or T3. I did contact someone, so long ago now, I can't think who, to ask how they can say this when test never carried out, they came back with two minor tests, with 6 or 7 participants. Just a joke.

I also question just how they can have tested T4 so thoroughly back in development when little if anything was really known about T3 at the time? Of course they vilified NDT at the time, how else would they have promoted and sold the T4? They had to get NDT off the market, and quick, everyone was so used to it. Bit too much like they are doing now with T3 itself. So why are they so keen to eradicate the use of T3? Is it because it underpins health causes or because new medication plans, maybe to replace the T4 they possibly know to be flawed, before we patients actually find out for sure and start suing. or new meds in progress and they want to recoup development costs there. I was convinced there was a combi brewing, there was one a few years ago, was rejected, but last year someone on BTF mentioned that BTA or BTF, I forget which were sitting on an approval committee re a new combo pill? It was soon after that the posts are pulled. Was that the grief they got for not submitting a consultation response or because of the comment re this, who knows. And now Bianco et al announces a T3 derivative in the pipeline.

Price was never the issue here, price was the excuse manufactured to allow T3 to be pushed off market. The fact that they are still withdrawing it after the consultation recommendations testify to a predefined agreement somewhere?

I'm pretty sure T4 is much more dangerous to our health than benefit. Certainly seemed to be for me.

Will stop now, as getting into a rant!

holyshedballs
holyshedballs in reply to shaws

Hi shaws

Please could you be a bit more careful and accurate in your posts?

the BTA hasn't removed NDT from being prescribed on the NHS. Despite PrescQIPP and the CCG's best efforts, it is still available on the NHS.

The latest (2015) BTA statement asks this question:

"Is treatment with thyroid extracts superior to treatment with L-T4 alone?"

and supplies an answer from the ATA

"Although there is preliminary evidence from a short-duration study that

some patients may prefer treatment with extracts, high-quality controlled long-term outcome data are lacking to document superiority of this treatment compared to L-T4 therapy. Furthermore, there are potential safety concerns related to the use of thyroid extracts, such as the presence of supraphysiological serum T3 levels and a paucity of long-term safety outcome data".

The BTA Statement 14 then goes on to say:

"There is no convincing evidence to support routine use of thyroid extracts, L-T3 monotherapy, compounded thyroid hormones, iodine containing preparations, dietary supplementation and over the counter preparations in the management of hypothyroidism".

Nowhere does it state that NDT should be banned.

The BTA have no power to ban anything. It is a private organisation but made up of individuals who work in the NHS some of whom occupy senior positions.

The problem is that NHS England, NICE the Parliamentary and Health Care Ombudsman the Scottish Public Services Ombudsman and others think that the BTA's view is the only view and are the "go to" people for Thyroid matters. They dont know that the statement is full of errors, untruths, irrationalities because they are not thyroid experts. They trust the Endos.

This is why the work of the Thyroid Trust, Thyroid UK and others is so important. the powers that be are now noticing the views of patients and a minority of Endos.

What is really amazing is that the BTA are actaully in agreement with the patient groups about the misinterpretation of their statement. The BTA made it very clear that the think that patients on T3 should stay on T3 but of course only if an Endo says the patient should be on T3.

Nevertheless, the BTA should be congratulated for this unusual dispaly of logic and patient support. I for one hope that it can be an olive branch and further co-operation occurs as a result of this crisis.

On another note, the Competition and Markets Authority issued a Statement of Objection to Concordia on 21st November 2017. Concordia have a chance to reply, but it is nearly a year without any update.

For people on Twitter, if you want to reply with something positive, here's the link :

twitter.com/ThyroidTrust/st...

For people who aren't on Twitter (like me) the page is public so you can still use the link to read what has been posted.

Yes, several groups involved, TUK, ITT , Midlands Thyroid support group, Norfolk support groups, BTA., BTF also, I hope I haven't missed anyone. But a great collaboration. Under Embargo for a while but hopefully details will be published and hopefully it will be a catalyst in moving the the dreadful thyroid situation, forward in a positive manner.

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