It appears the NHS has now ratcheted up their anti ndt further. Sorry it wouldnt let me copy and paste but link is below.
What I find interesting is that it admits the research trials are small and of short duration on ndt. It then goes on to say that the evidence isnt there to prove that ndt is of benifit except in exceptional circumstances!! It then goes on to talking to patients about the risks of taking it.......even though the trials are small. Infact its whole approach seems to be that ndt is something that hasnt been proven as if its a new medication despite admitting it was the main treatment up to the mid 1970's when the synthetics came into play. I found it a bizarre read.
You may have already seen this but for those of us on ndt, myself included, it explains the great wall we are greeted with against its use, even though it doesnt seem to have any great proven scientific validity behind it!! NDT is being squeezed out slowly hut surely and will be a great loss to those of us who benifit from it.
Having gone through the synthectics which did not work nearly as smoothly and effectively for me as the ndt I find it scary how this product is being pushed out of use for reasons which are clearly not fully researched backed.
I really don't know Diogenes. I find it scary & I despair. Ive been on a ndt for 15yrs plus after trying the synthetics ad nauseum. Ndt gave me my life back. I fought to get it on the nhs.....& so I have for the last 10yrs. Ive been challenged twice over its use, having to see endos who backed me, I dare not change GP surgery who back me so dars not move house.....but I fear that at some point I will be refused and frankly on a pension I cannot afford to self fund as the price has gone up soooo much. The tale of ndt is soooo much like the children's story "The Emperors Clothes" that I find the irrational response of the medical bodies truly scary. Infact the skeptic in me believes they must be in the pay packet of the pharmaceutical industry who profit far more from synthetics than ndt.
The only thing to date I can do is to ask them to produce proper research evidence which proves beyond doubt their unfounded allegations but of course they cant. So far thats stopped them in their tracks. I've had to challenge two cardiologists who wouldn't listen to my nhs endo but went behind my back to discuss my case without my permission with an unknown endo who doesn't know me! This because I have tremors due to gluten ataxia but not due to thyroid toxicity!
It also leads me to think does this sort of nonsense go on in other fields of medicine?
Am sadly of the opinion that there will have to be a legal challenge at some point.
That was interesting, I had full thyroidectomy in 2019 and have suffered with synthetic thyroid medication T4 especially, T3 restored my thyroid levels but left a bad metallic taste in my mouth, in 2020 after 2 blood tests showed my pth was over range and calcium I got a rather flimsy diagnosis of primary hyperparathyroidism, because some of the symptoms presented like over medication my gp fought for me to come off T3 frightening me with heart attack ect as my heartbeat was fast (admitted to hospital twice) my T3 level was fine but my TSH was 0.05 so just to show her the symptoms were not T3 related I came off it and reluctantly went back on T4 just for 7 weeks, 7 weeks later symptoms still with me and now my thyroid bloods were awful, so nothing to do with T3.... But she wouldn't put me back on T3 till I saw the endocrinologist 🤦♀️ my surgery wanted me off this expensive drug... Well the last laugh is on me as the endo as prescribed liquid levothyroxin, is more expensive than T3 I think😆.. But it will remain to see if I'm OK on this medication as I believe it's T4, if not, what's my alternative? Probably NDT but if that's discontinued what then..??? 🤷♀️ More study needs to be done, but as you pointed out it's all about the money with the pharmaceutical companies 😠😠
Am so sorry you've been through this. Have they investigated the actual cause of your high heart rate? I think they get blind sighted by thyroid meds and can't seem to get beyond....the belief that a high heart rate MUST mean your over medicated even when blood test rests show otherwise. Bonkers....
I found out to much calcium can also raise your heartbeat, I vomited in A&E, the doctor said I notice you have no thyroid, I take it your on thyroid medication, I think your taking to much you need to decrease it🙄 I asked him to look at my last thyroid results, I knew I was not over medicated, he came back into the room and agreed my thyroid hormones were actually OK!! So when he took bloods I asked if he would do calcium, as my pth was over range on 2 tests, he did but came back a few hours later to say it was normal.I asked what it was 2.59 he said ..(ranges..2.10. 2.60) I said that's to high for me my normal resting calcium is 2.34/5...his recommendation, you are over medicated 🤦♀️ OK doc.. 🤷♀️
How ironic it would be if these people making these decisions causing so much angst had to suffer with a thyroid disorder and then find out what it is actually like to be denied medication that can make you well again. It makes my blood boil lets hope.......
Am sure there are such people but I suspect the movement just rolls over & squashes them. Am not sure how you break this awful spell.....Ive only ever seen the situation get worse over the years....
And even more of a nonsense is that we have medications in this country whom the long term side effects are not really known but are "approved" for use & patients are used to find out what happens. Eg The use of Estrogen blockers such as Examastane now recommended to many to take for 10years following a diagnosis of breast cancers with estrogen positive tumours (70% of bc). Research out this year that even after a few years of use it causes bowel incontinence & vaginal prolapses in 20% of patients and scarily in the brain affects higher functional skills the percentage not stated. None of which was known when I was popped on that treatment 7yrs ago. Yet NDT has been in use for well over a 100years with no real long term use issues and is condemned!
The lack of logic is astounding and makes the so called science based medicine fraternity a laughing stock!
The situation is even worse than could be imagined. Let's work under the general rules of comparing two procedures - these people state that a randomised clinical trial is essential to discover the better utility of one procedure rather than the other. For the moment, the design of such a trial is deemed OK if one is dealing with a homogenous patient group. And this is still held up as the stumbling block in that no clinical trial has shown preference of T3/T4 or DTE in this model. Now we know why - there is a strong minority of patients who would benefit, swamped out by the indifferent majority. This is being recognised at last. But if the authorities insist on a trial to demonstrate benefit or not, they should understand that NO clinical trial of the accepted kind was and has ever been published of the effects of T4 versus DTE. They cannot have their cake and eat it! Either trials are essential to support benefit/no benefit outcomes and thus decide on action or they are not. This cherrypicking is simply data manipulation to suit prejudice. The very worst kind of misuse of science. Even further, these people will not countenance change unless and until trials have been carried out by the "right people". Until then they parrot the phrase "insufficient evidence". Who decides when "insufficient" becomes "sufficient". They do of course.No wonder I have a cynical twist to my mind in this.
In this case, there would be upfront worries that would hinder a trial. The simple fact is that even if a huge trial (and it would have to be huge, and segmented into possible positive groups away from the majority) was done, then if positive results came out in favour of DTE in suitable patients, the findings would run up against the footdragging and long-founded positive discrimination against DTE the cemented advisory panels would throw against it. It's still the case of "the right people must do the right work before we will accept it, and because the right people don't believe it anyway, they won't volunteer".
Thats so sad Diogenes. And tragic for the patients who benefit from ndt like myself. So I can expect the death- nell on my nhs ndt treatment at some point.... lol
So true Diogenes. Too many heads would roll so wouldn't do fir research to show a definitive need. Meanwhile oppression begets more oppression. Surely at some point the dam must burst?
I think it might have been switched from “First do no harm” to “First do nothing—tell the patient to come back in a fortnight if their symptoms haven’t cleared up, then maybe do a blood test or two, preferably one that’s likely to come back in the normal range then tell the patient they’re just depressed and prescribe Sertraline…
However, some DTE products remain commercially available (e.g. Armour Thyroid, Westhroid. ‘Nature-Throid’ and Erfa).
Obviously entirely missing that fact that Westhroid and ‘Nature-Throid’ are NOT commercially available - and have not been for around two years.
There is little published data comparing the clinical effectiveness and safety of DTE products with levothyroxine monotherapy against objective outcome measures in people with hypothyroidism.
There is little published data comparing the clinical effectiveness and safety of levothyroxine monotherapy with DTE products against objective outcome measures in people with hypothyroidism. (That is, from around 1956 onwards. When levothyroxine was introduced with less evidence than there is for desiccated thyroid.)
It's honestly so scary. As a thyroid less person who tried everything before settling on NDT, I feel I live my life fearing what if one day I can't get it. For now it's ok but I worry as become an old lady I'll get bullied out of having it and my health will plummit! Shouldn't everyone have personal choice over what they choose to put in their bodies , it makes me so angry. 😡
Indeed they should!! But theres a two arm thing going on. The NHS has dramatically in general reduced the medication options on their pharmaceutical list across the board.......that includes NDTs. Alongside this we have this nonsense going on over a huge purge of getting rid of ndt prescribing.........based on filmsy non scientific evidence at best.
And more money being spent on a whole new structure and not on patients. It might explain why a considerable number of meds that were available on the nhs across the board have been removed. NHS seems to be increasingly moving to a one size fits all mentality or at best a very restricted option choice.
Yes they do seem to like re-inventing the wheel but with different names.....lol. I dont remember the restrictions on meds being as heavy handed as now though...lol
Thanks for posting waveylines . I rather think the evidence is there if most of my other blood results, as well as thyroid ones, are much better in range. Within a very short time when I first started NDT in 2018 my mood and energy levels also rose. I really don't know how I would fare if I had to go back to Levothyroxine, even with Liothyronine.
Oh yes the evidence is there - a whole 100 plus years of it! Sadly the medical bodies want "research" evidence.....the rest is regarded as anecdotal even a 100yrs of it.
I know I won't cope well on the synthetics.....I tried them before moving onto ndt. Ndt made me feel normal again, like my old self. No more highs and troughs as with levo & lio, just a steady even level. It felt amazing so the thought of going back on that stuff fills me with horror and shall fight it all the way. Sadly what we think, feel doesn't count....nor does physical symptoms. We live in a number crunching environment & nothing else matters. Lol xx
Oh dear...and I was just about to make a new post asking if it might be possible to eventually get my NDT on the NHS if I could show them concrete proof that I'm better on it than I ever was on Levo...I can imagine that I would only be met with the same, if not even more gaslighting and bullying if I tried now. I just hope that NDT doesn't completely stop being manufactured.
Oh please don't give in to them! Just make sure you pick a ndt friendly nhs endo. And cross check on here for feedback. Thyroid UK have a list of thyroid friendly doctors. X
You may well fair better if you go to a top thyroid specialist who works in both the NHS and private as he will be ' above ' the pecking order and his word ' final ' :
You have the details there somewhere - ??
You'll need to start off ' private ' and if he has any compassion he'll switch you to his NHS list in due course - he's slightly out of your area but not that far, and once settled on a dose it's hopefully low maintenance and a NHS script for NDT sanctioned by him, to your primary care provider should trump the system that currently stops you getting better.
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