I has to move GP Practise and before moving to current one I asked to speak to a GP. Receptionist said it wasnt necessary if a nhs consultant has recommended they will prescribe. So wouldn't get a doctor to phone me.
I moved. All seem good but my repeats were not being set up. So became concerned. Today in a phone call about
something else the new GP said we sent you a letter out. We can't prescribe ndt you will have to buy it!!
I explained you have two nhs endo stating I need it and so more than the guidelines required to have it prescribed. I'm under one currently who just reaffirmed this. I'm post heart surgery you can't just stop a medication like that against a nhs endo advice!!
Upshot of quite a long conversation was a meeting to be organised. He's ordered a months worth of ndt. GP said the local health service had issued an edict late 2023 that ndt mustn't be prescribedby GPs.
GP then said we prescribe by TSH. Yours isn't normal it's suppressed. I said my thyroid hormones are in range. You will know that a nhs endo advised you to prescribe by ignoring the TSH but keep ft4 &ft3 in range. My TSH is supressed because of the T3 content of ndt.
Anyway am wanting to research my rights as am not prepared to compromise. my health. If they go by TSH I'm not sure if mine would ever come up after 20yrs. It certainly didn't when my thyroid hormones dropped below range my TSH stayed the same: 0.02.
I know this has been happening a lot. But I want to fight this.
Anything I can quote, advice etc gratefully received. Has anyone wone their case? Many thanks
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How contradictory.!They have gone ahead and ordered a month supply of NDT though you TSH is suppressed and they also stating they prescribe by TSH when yours is apparently suppressed!
I assume it is NHS Endos that have affirmed NDT prescribing. So why are they overruling?!
No answers here except I’m frustrated for you and all of us over this.
He said they had received an Edict from out local health service saying no GPs may prescribe ndt. That over rides anything a nhs endo says apparrantly!!
I think the fact that they've ordered you a months supply goes in your favour. Why do that if its not protocol? They must have a loophole to provide but are trying it on 🤔
I think its more about my prescription renewal is due next week and it's far to short notice for me to buy some myself. As I'd need a script from private Endo first. So they wouldn't look very good if I put a complaint in and became very ill for lack of thyroid hormones.
But yes he has effectively agreed to prescribe.....for the moment.
So sorry to hear this. The last thing you need after heart surgery & a move. I’m afraid I have no useful advice as I have to buy my own NDT, but do let us know how you get on. Good luck!
Yes thanks Greygoose. Will have a read through. It seem I'm up against the local health services directive. Not only that my GP will only treat by TSH. I dread to think how ill thryd have to make me before it rose if it ever does.
Nope.....but he does have several letter from nhs Endocrinologist telling him what to do! Hes aware of these letters. Am outraged by " you'll have to go and buy it." Who do they think they are?????
Thanks Greygoose. Now I've found a couple of pertinent bits about ndt will.look again re patient choice and see what I can extract from that. I'm sooo fed up. Just got back on my feet and feeling am winning over the wretched Amiodarone post op and wanting to celebrate....but no good old GPs have to.put a spanner in the works with the biggest load of nonsense I've ever heard.
Sure thing Greygoose.....the hippocrytic oath has definitely been binned. More about what big pharma drug they can get you on like statins or anti coags if your over a certain age. A friend of mine who is 76 was put on statins, she's been in bed all week. Normally very active & busy. GP said stop taking them for two weeks then we will review. Not sure what there is to review....they made her ill so stop...fullstop!
I'm so sorry to hear & what an absolute nightmare for you! I totally empathise bc I've just been forced to move GPs too, and this is because of VV bad treatment & downright lies from them over the past 2 yrs - including having to fight to get them to prescribe me T3 despite all the evidence supporting my need. And now I've been forced to move (for reasons I won't go into but I had no choice), I'm extremely worried that the new GP (who was useless the last time I was registered there!) will aim to remove my T3 meds. As we all know on here, the vast majority of NHS Drs are an absolute nightmare with Hypothyroidism - and the NICE Guidelines are harmful to people like us. I'm sick to death of hearing how wonderful the NHS/GPs are with other issues my F&F have had, when they've been so utterly crap with my Hypo needs for 15 years.......and clearly yours too! I developed ME/CFS because of the incompetence of the NHS over my Hypothyroidism which came first. I really hope you can get your issue resolved ASAP. Its exhausting but keep fighting & never give up. I hope someone else on here can answer your specific Q. I just wanted to give you some moral support. Good luck & tc 🙏
Awww thankyou. Sorry to hear you've suffered too under the nhs dogmatic regime og hypothyroidism. I was originally diagnosed with CFS/ME which I don't have. My GP is happy for me to buy my own ndt though! Give me strength!
Well I guess he would like all patients to buy their own medicines, then nothing would be coming out of his precious budget. GP's remind me of Gollum sometimes.
Frankly I wish a lot of meds were available without prescription because I'd prefer to buy them, rather than be at the beck and call of doctors.
They fall over themselves to get you to have healthchecks, screenings and vaccines because that generates money for the practice, but woe betide the patient who wants something off label or expensive 😡
So true! Thing is it's cheaper for them to prescribe Armour than the rafts of medications I needed on levothyroxine. Never mind the deliterous effect on my health. Not that that matters much these days!!
I'm the same with my LDN, its far cheaper to prescribe it than painkillers, sleeping pills and antidepressants, which dont work and have awful side effects. But they wont prescribe it so I have to go private. Madness.
The annoying thing is they complain when a patient is on a lot of different medications and try to cut them out or reduce them as much as possible, when they are the ones doing the prescribing.
And they treat each condition as though its an entirely seperate entity rather than part of the same syndrome or because a medication that's been prescribed is causing side effects which then need treating, and before you know it you are on the pharmacological merry go round.
The only ones benefitting from this are the pharmaceutical companies.
Yes they do not string things together but see each and everyone in isolation. They were meant to be the ones that saw the overall picture of a patient which meant they were good for signposting....lol
The only thing I can find so far is Advice for Liothyronine. It specifically says not NDT as too variable or words to that effect. england.nhs.uk/long-read/li...
Aww thanku for replying 😊 Did you ever have a formal diagnosis of ME/CFS or was it your Hypothyroidism without the right meds? And do/did the meds alleviate the symptoms? I am improved on T3 but it has not been a magic bullet I'd desperately hoped for after hearing so many other stories. I think I was too far gone by the time I finally started it, and the initial dose was so pathetic because the then Endo didn't have a clue 🫤 Like you, I have a very surpressed TSH. TC x
I was formerly diagnosed with ME/CFS by a NHS Consultant. Then two years later my TSH rose over the threshold so was diagnosed with hypothyroidism and started on a starter dose of levo and left. Year later could barely function so we t private about my thyroid. By then TSH was well over range despite levo. Luckily this doctor now sadly passed sorted me out over a couple if years and I ended up on Armour. Couldn't get that on NHS so private paid for three years till another GP practise took me on. Then new NHS guidelines said see Endo so did who recommended Armour continues. Now latest Endo who also works in the nhs recommends continuing with ndt though I saw him privately to sort out mess of a medication NHS gave me post op. I really don't know what more they want! I can think of a raft of choice words though for all the stress a d worry these GPs cause with their arbitory decidions which have no regard to my health interests!!
My experience was similar, diagnosed with Fibro in 2008 and diagnosed with Hypo in 2020 but looking back when GP did bother testing thyroid it was TSH only and always just inside the cut off number. Fibro and ME are useful scapegoats for undiagnosed/untreated Hypo.
Yep 💯 agree with you.......and with me my Hypo was so *severely undertreated for 12 yrs with Levo only that I was diagnosed with ME/CFS (& am predominantly housebound/bedbound 😔). Have Fibro & Pots (undiagnosed but have all the symptoms). This all came about despite my repeatedly telling them for 15 yrs i.e countless GPs and NHS Endos that I felt appalling. My current Endo (who is retiring 😢) told them *this in mid 2023, but still I had to battle hard and threaten Legal action if they did not follow the advice. Unfortunately bc I was so far gone by the time I finally got onto a decent dose of T3 (70mg daily today), I still have ME/CFS. The T3 helps but hasn't been a magic bullet. Its not just the chronic fatigue, it's multi-systemic as per all the delightful symptoms shown in the attached pic. Basically I've been completely failed by the NHS that I slogged my guts out to pay NI Contributions into for 25+ yrs. And have lost my career and everything as a result. No wonder so many people on here are angry & still sick bc of being gaslit & ignored 😤 How is your own health & life with Fibro & hypo? 🌼 🌸
Green/orange/beige background colour with some writing in black.
Well I have Ehlers Danlos so its hard to say. Sometimes I think I dont have Fibro at all and its just the EDS. I also have Pernicious anemia so its a glorious s☆☆t cocktail lol.
Its varies tbh, some days are good, others less so but I try to stay positive and do what I can. I'm fortunate I'm better off than many. I can get out of the house and exercise and lead a relatively normal life, I'm thankful for that 😁
"Sh*t cocktail" ....such a great expression & nails it. I have PA like you. I know someone who developed ME/CFS after EDS (& now has both), but thankfully it sounds like you are functioning quite well despite everything. My 'exercise' is using the stairs and having a shower when i can muster up the energy. I used to frequently run, gym, power walk + have very full on career and social life before all of this sh*t cocktail. I've rarely left the house since 2019 & it's soul destroying. Hoping for a miracle every day. Take care of yourself 🌸
3Sending you big hugs Rhian. Feel for you. I remember those days....crashing. I felt dreadful, like someone had pulled the plug on my energy. And if I stepped over my pitiful level I would go white (apparantly) feel dizzy and have to lie down. I had two young sons at the time to look after so it was a struggle. I attended the CFS/ME clinic. They had this idea I could increase slowly bit by bit what I could do. However I was the opposite and week on week could do less. I had digestive issues all sorts. Tried all sorts of diets. GF helped the most. The psychologist at that clinic said I had an excellant positive outlook so at least they couldn't say (as they did to others) it was a mental illness.
And then I crossed over the magic TSH threshold and told I have Hypothyroidism. Full of hope all would get better. But it didn't. So that how I ended up under the wonderful Dr Skinners care. I was woefully under treated and overtime with his help I improved massively.
Yes they are. I'm not saying ME/CFS doesn't exist but they are never going to progress research in that area while ever they add in people who have undiagnosed hypothyroidism.
Yes, and I can absolutely verify that ME/CFS does 💯 exist - and that it's not just Chronic Fatigue symptoms which alone are vile, and are a key feature of Hypothyroidism. It's the most hideous multi-systemic illness one can imagine, and has been life changing for me in tbe worst possible ways i.e I have no life anymore because of it. I do definitely think my illness was caused by undiagnosed Hypothyroidism, and then after it was diagnosed by undertreated Hypo when I told them for 12 yrs than Levo made no difference to my symptoms. I only wish I could sue the NHS, but don't have the energy to fight it and the system would never let me win, because it would expose one of the biggest medical scandals in history. Anyone fancy collaborating in a Group Claim?!! That I would love to see.
I went through the whole sad sorry experience. Levothyroxine, then levo/liothyronine before finally NDT which was a light bulb experience. Its terrible the way its denigrated. As the article, below says ndt content is now regulated and stable.
"Significant benefit is experienced by people who by nature of their lack or response to levothyroxine have been treated with NDT. While this is a highly selected group of people, the severity and chronicity of their symptoms and the fact that many patients have found their symptoms to be alleviated, can be viewed as valid evidence for the potential benefit of NDT when given after careful consideration of other differential diagnosis and other treatment options."
Tbh I dont think there IS any thinking anymore. That's the problem. If they sat and thought they'd see how illogical they are and how much unnecessary suffering they cause.
What an absolute joke. 2 NHS Endos say you need NDT & you are 'well' on it as opposed to off it, but their expertise is contradicted by some £number cruncher at NICE Guidelines. We are truly living in 🤡 World!!! It'll all be down to cost as with T3 Liothyronine. They want us all to fit our round pegs into that square hole that is synthetic & utter sh*t* Levothyroxine only 🤯 IMHO a lot of this T3 & NDT meds crisis situ for us people is because the NHS are being forced by activists to pay millions out for puberty blockers & *cross sex hormones i.e giving HRT to people who should simply not be on it - and people like us have to suffer to make the £savings so others benefit who should not be any said Meds!! Say no more. I had to beg & eventually threaten Legal action to get my previous GP to provide the Liothyronine when the need was fully evidenced by NHS & Private Endo + DIO2 Testing. And I had to beg the GP prior to them to let me try HRT for horrific Menopause symptoms! (*above) . Its all absolutely disgraceful. You'll need to send a formal letter of complaint to your Practice Manager as a starting point. Usually they have an email, so you can easily attach your Endo docs/evidence. Make sure to mark it as very urgent and that its a 'Formal Complaint'. That should shift their backsides! 🙏
All my sympathies RhianR. I've only just joined this practise. I've already asked for a meeting with them....barely three weeks in. So I will wait for the meeting. He has prescribed the ndt for now. I say shame on them....making me fight my corner like this post op.
I'll keep the formal complaint for later....would rather cajole them at this stage. Besides which they can't just take me off it....as only an Endo can do that....and I am under an Endo at the mo who says the opposite.... giving them advice. They can't have it all ways though it seems they are trying to!
Apparrantly it's the HA Specialist Pharmacy whose come back said no!! So the GP said. So my GP needs to go back and say but two NHS Endo's have said yes. So stuff their specialist pharmacy. It's a joke. He told me it was a new directive that came out late 2023.....they can stuff their directive where the sun doesn't shine.
Pharmacists are not Endocrinologists or Doctors for that matter!! But will try to override them to save money!! Take from Peter (us) to pay Paul (for other stuff they see as more important) 🤯😤
😤😤😤 Am fuming. They make you jump through endless hoops to get the necessary thyroid treatment. Then years later some lesser wally waddles in tutting going no no no who are not suitably qualified aka an Endo, the very person you had to see to get it approved. Maybe I'd better list all the meds I was on when on Levo....it was a lot....more expensive than Armour!! And how much money are we wasting on these idiots who are causing havoc and making a nonsense of our Consultants recommendations. I mean what's the point of going to see a specialist if some puffed up Specialist Pharamacist is going to say no!!??? And we pay them for the privilege!!
”…some lesser wally waddles in…” Exactly. I really, really feel for you, wavey lines. I feel for all of us…for people who’ve been ill and misdiagnosed and labelled with fibro/me/cfs/mental ill health and fobbed-off and neglected for years who finally get the treatment they really need and then have to live their whole lives on tenterhooks in a permanent state of anxiety wondering when the lesser wally will waddle in and upset everything!! It stinks! I hope it all gets sorted for you xxx
So beautifully summed up Jojo. I shall keep that expression of "the lesser wally wandering in" sounds like an extinct prehistoric creature and that's how I shall view such professionals here on in....out of the arc, belonging to a past era. It helps to see them as dinosaurs!! Thanks. 🙂
Well done to you Wavetlines. I really don't know what's happening to out NHS /GP it'so sad it's as if some don't care. It's very hard and cruel for those who don’t or are to busy to put in the research to find out what their rights are.
Thankyou. I'll be honest Dancing they won't be too busy if they don't take that time researching be cause they will be too ill to work or look after their children. I've been there years ago with two young children on my own, full time job and mortguage to pay. Health is a top priority in that situation.....you can't afford to be ill for long so you have to fight your way out no matter how poorly you are.
Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study.
Has your FT3 been tested along with FT4?
As you recognise your medics are clueless!!
We know TSH is not a reliable marker based on scientific facts yet they drive a coach and horses through these facts preferring to follow the belief that TSH is the gold standard test
Time for a reassessment of the treatment of hypothyroidism
John E. M. Midgley, Anthony D. Toft, Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann
You could argue for the inclusion of a FT3 test based on the high probability of low T3 due to diagnosed CFS/ ME
If the result is low ( and you can show T4 to T3 conversion is poor....high FT4 with low FT3) then you need added T3
NDT ( I grain = 35mcg T4 + 9mcg T3) has been proved to help you and the T3 has made a difference... as the Paper above shows
You might argue...
Since it's been proved that for wellbeing you need the T3 in the previously prescribed NDT which they are now threatening to withdraw. Instead, are they going to prescribe a combination of T4/ T3 ...or are they going to let your health decline due to low T3?
Do these expensively trained medics realise that ( and I rant about this regularly because it's so important!!)....
For good health almost every cell in the body must be flooded with T3 by way of an adequate and constant supply.
You've had heart surgery! Do they understand that the heart needs a lot of T3? Might your cardiologist support you...call his secretary.
They have shot themselves in the foot by already ordering NDT which indicates you need it...and creates a precedent
Sorry it's a bit of a ramble but I totally agree we need to fight this ignorance fuelled insistence on TSH dominance.
I need high dose T3-only to function, despite that I have to buy it from abroad. My well being ( in extremis my life) depends on a ready supply of T3.
Suggest you make a list of all the facts that support your need for that prescription and then watch as he tries to argue against prescribing NDT
Thanks Dippy Dame. I can't demonstrate the low T3 to T4 ratio you talk about as have been happily on NDT for nearly 20yrs. I can use the evidence of research on CFS/ME to support. But the point is I don't need to produce all this evidence surely as two NHS Endos have already assessed me as needing ongoing NDT. Nevertheless I've dug out a couple of useful docs to refer the said ignorant GPs and their so called Specialist Pharmacy too.
Lastly I've been on NDT prescribed by the NHS for 15years so moving GP Practise in the same HA should not make any difference as its already underwritten by an NHS Endo and I currently have another NHS Endo who also agrees (but I see him.private because of long NHS wait list & I need help with the effects of Amiodarone that the NHS prescribed!) . IE a 15yr precedence has already been set of ndt being prescribed. So yes new GP may have realised he has no choice but to prescribe it.... Bottom line this will come down to them trying to argue economics whereas its about my health. And the need healhwise is already proven.
I think its for them to prove otherwise and they can't can they as I followed the NHS Guidelines Protocol.
They sent me a letter out on Monday GP said....haven't received it yet. Shall read with interest how they can argue against. I suspect they hadn't read my file properly.
Ah stupid me...I forgot that you have T3 in your serum...unless you can dig out historic lab results which prove poor conversion. I managed to get my labs back to 2000
Maybe it's just that I'm now ancient but I think the world has gone mad....and the whole thyroid debacle is just part of that madness!
No worries. I agree it's a mad world. I sometimes think I'm entering an asylum when I go to my GP surgery....but that would be an insult to Asylums tbh. But yes they are mad so mad there logic doesn't exist. As for medicine it flew out the window quite a while ago....
Where do you think the information that pharmacists, labs, ICBs and GPs use come from, to make up their local guidelines?
My educated guess is the precious career driven endocrinologists in the first place. This very small sample of alleged human beings, (medical helpers) are responsible. Their ‘oar’ is everywhere. It’s not that it shouldn’t be. If these were ethical people doing the right thing, it would not be a problem. However it’s a massive problem, these idiots throwing their weight around. The system is allegedly to simplify doctors lives (and no doubt save money) but has got to the point that I wonder why we are actually bothering to train these privileged people at our expense, who then think they can just refuse to treat us, optimally. It might be easier to train monkeys.
The rules are written by the endos and the ‘allied services’ translate them, no doubt thinking that they are doing the right thing.
I have seen it reported on the forum that endos themselves find that they cannot override the rules that they themselves had effectively written by proxy, by allowing certain idiot endos amongst them to get up the greasy pole. A perfect example of a circular maze. It’s truly insane.
Such is the career structure of medics, the patients are the least important component.
Your endos actually sound like they are practising real medicine, extremely unusual I would say these days!
Yes they are....the first NHS Endo had me under his wing for 5yrs. Then he signed me back because I was as stable as stable could be. Sadly he retired a short while after. The second NHS Endo also practises medicine in the true sense but I see him private so GP lept on that as an excuse not to prescribe. To be fair he tied himself in knots and then when I politely pointed his knots all out he wrote the script. But its temporary!! How, how how how????
Am not lying down on this. Theyre going to have to produce a far more reasoned proven argument to stop it after all this time then tell me go and buy some!!
My fear though is that the NICE Guidelines now say NDT should not be prescribed because its unstable.
Somewhere on here ie this forum, there is a recent piece of information from NICE stating that NDT can be considered for treatment of hypothyroidism. I don't think I've imagined that, but need a caveat that I may be mistaken, though it struck me at the time as being very important information.
Yes that's true but I've just looked at the NICE Guidance and it's now been change to liothyronine and levo. Open to any links telling me otherwise. That would be great.
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Help needed to convince prescriber to prescribe the amount of NDT I need.
GP refusing to prescribe T3
CCG refuse to prescribe T3
URGENT HELP - Has anyone been successful at receiving NDT on the NHS
Anyone know of a private doctor who can prescribe NDT?
