Firstly feeling good stomach wise on the rosway labs NDT 👍 as I said I don't expect to be doing cartwheels down the road just yet😂 because I still fell tired and fatigued, obviously my TSH was 45.66 on May 31st so I reckon it's going to take some time for me to start to get some energy back still suffering a bit from cleaning my spare bedroom the other day🥵 felling really tired today.
So the reason I've posted is because I've just received a phone call from a gp I saw about my TSH being 45.66 and asked to be referred to an endocrinologist who will pescribe NDT, as I said she was referring me to Newcastle 🙈 I informed her Newcastle do not pescribe NDT, she as just rang confirming what I already told her 😡 she told me there was nothing they can do as no endocrinologist within the NHS pescribes it.
I then informed her I have found one in Macclesfield he may pescribe it💁♀️ but I haven't found anyone else as yet! , she as told me to seek an endocrinologist who does pescribe it and then go back to the practice in the hope they will refer me on.
As if I haven't already been through hell I'm now having to find my own endocrinologist who may or may not pescribe me a drug to keep me well....you just can't make this stuff up.
I did read on here there is a list of endocrinologist, do these endocrinologists pescribe NDT??
If not how do I go about finding one who will pescribe it?
Think Wavylines was having the same problem 😍
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birkie
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I find this absolutely appalling we have to find our own consultants to advocate for our own health 😡
As a 62 year old woman I have gone through the nhs All my life and I always thought gps jobs were to find you the right specialist for your condition, I can't remember in the 70 or 80s having to find my own specialist 🤷♀️ I thought that only occurred when going private as my aunt did in the late 80s ..she had money and didn't want to wait for her op so seeked out a private specialist/surgeon.
I've got to ask a silly question.....what the hell are GPS doing today to earn there money?😡
I'm in my mid 50's and can remember family doctors, still remember the name of mine, who when I was a kid came out when I had measles and mumps, my mum always said how great he was, I was with that surgery until I got married.
Its all changed though, we are simply units these days, units of money preferably, especially if they can prescribe statins and the like. We arent patients but targets, spreadsheets, numbers on a screen. And GP's are no longer caring family doctors but private businesses employed by the NHS.
I'm pretty much done with them tbh. If I'm comatose then I might consider seeing someone ( or not) but other than that I'm very averse to having any dealings. I dont think my psyche can cope with the constant disappointment, not just GP's but physios and anyone else in the NHS.
Your so right👍 our family doctor was professional and had a lovely bedside manner and came out when we had measles, mumps, sickness and diarrhoea ect he took his job seriously and cared for my whole family.
Heck..my mum was 42 and had a bad bout of sickness she couldn't put her finger on why , and as she was running her own chipshop alongside her mother she couldn't stand cooking, our gp came in for fish and chips one day and asked where my mother was , my gran told him , he immediately went next door to see my mother...he examined her then told her she was pregnant 😂😂 my mother thought at 42 she'd never get pregnant again 😂 and he looked after her very well until my brother was born.
Now that's care....wouldn't get that nowadays
I've got a clot in my left eye I had a follow on appointment with an eye specialist in March this year and they cancelled it , I called yesterday to ask if I was still on the list to be told.." yes but there's a backlog you will be informed when an appointment becomes available....NICE... just so long as i don't have a stroke in the meantime 😡😡
I suppose its because back then I had no thyroid issues only minor things until I needed a full hysterectomy that was in 2003 but everything was sorted for me ... the feferal the surgeon ect after care was spot on to.
My god how it's changed slowDragon, and not for the best as I said I can't remember being asked to seek my own specialist out for my hysterectomy or sort a surgeon out either.
Mind you I'm forgetting it took my gp over 18 months to get me diagnosed with hyperthyroidism , then another 5 months to get the diagnosis of graves thyrotoxicosis so I reckon your right slowDragon, it's not till we are actually diagnosed with a thyroid condition that we see how little the nhs know about it🤷♀️ and how to treat it.
We are so Very Blessed to have this Great Forum. The support we Get and Give one another is out of True Hardships that we have been put through . Some and often by Dr's Ignorance and many Dr's who can not think out of the Box.I for myself am very Grateful and Thankful for this Wonderful and Caring Members who care to help and share their experiences with others for other's well-being. ❤
I truly don't know where I'd be today if not for this site❤️I, like many of us are still struggling to get ignorant gps and endocrinologists to understand the complexity of thyroid conditions , and the treatment of the condition its self be it hypo,hyper, hashis, thyroiditis ect.
I found they seem to lump thyroid conditions together , and found they know little to nothing about thyroid conditions, and if you challenge them they go on the defense some even becoming annoyed you challenged them, one some years ago telling me he was the specialist not me😡 another telling me to go find another endocrinologist 😲 and she was an nhs endo 😡.
It's truly appalling what we have to put up with..I know of at least 3 people who have diabetes and all 3 say they have really good treatment from there endo ..I asked if they ever have trouble obtaining there insulin.
" no never" was the answer
Is it not the same? insulin keeps diabetics well , that's why they take it 🤷♀️
Thyroid medication keeps us well that's why WE take it, but I see time and time again people complaining of not being able to obtain the correct thyroid medication or in some cases like myself can't get any thyroid medication at all.
I've said this before they would not let a diabetic patient do without insulin so why do we have to fight to get our medication???
I couldn't agree with you more. I will take it one step further. They ought to sell Thyroid Meds over the counter. It ought not to be controlled the way it is. Thyroid patients understand and know what feel right for them. If they can legalize drugs why not Thyroid meds?????
Hello birkie. I'm delighted you're finding the Roseway Labs NDT is suiting you. That's brilliant and encouraging news.
I see an NHS endo who is on the list. I see him privately. ..... the NHS wait was too long. He prescribes NDT privately for me...... he said he was not allowed to prescribe NDT on the NHS.
My reason for seeking out an NHS endocrinologists is because I can't afford to pay private for it , I'm on disability living allowance [ my son paid for rosway to give me the NDT prescription] and I really don't want him paying for my thyroid medication, and why should he!! why because I can't afford the very medication that may give me my life back should the NHS deprived me of it😡.. it make no sense, if I feel well on a thyroid medication it shouldn't make any difference what the heck it is...what grinds my gears is when you talk about NDT to these so called specialists they spin a cock and bull story about it being dangerous to take, it was well tolerated when it first became available 😡 the only reason the NHS stopped supplying it was because they had the synthetic stuff so decided that everyone should take that no matter what.
It's total ignorance on there part, you'd think there priority would be to get the patient well again 🤷♀️ seems that's not a priority anymore....its saving money now...how sad😔
Why shouldn’t your son help you? I’m assuming he’s doing it of his own free will and, perhaps, he sees it as a way of making up for all the sacrifices (financially and emotionally) you made from the day he was born to the day when he could finally stand on his own. If he’s anything like my son, he will be more than happy to help. Don’t reject it out of pride…
I’ve been following your journey and I really do hope you’ll get the treatment you need that seems to be working for you.
He as said he will help all he can..but by getting a family member to pay for thyroid medication you need, it's letting the nhs off there obligation to look after patients .
He his saving towards a deposit for a mortgage atm so I'm feeling a bit guilty his paying money towards my medication when I on disability and i don't pay for my prescriptions 🤷♀️
Last time I bought Erfa I paid £250 ( including customs fine) that was with a percentage off the initial price. The £800 works out at standard dose even if the NHS pays half that
I take half a grain with T3. To survive on Erfa alone I suspect I need around 4-5 grains a day. That would be even more expensive if getting through NHS.
Private pharmacy in England cheapest I've seen is at around £120ish (few years ago)
Alanna012 birkie YoginiDancer Today I've received notification of the cost of my latest Erfa prescription......1 1/2 grains for 6 months...... £ 175 ish... plus postage around £7.95. Sorry not to be exact, it was in a phone call and I couldn't hear very well. If there's a big difference when they arrive tomorrow I'll amend this
Amendment......my prescription arrived today. I have received 6 months supply of Erfa 1 grain. The 1/2 grain for the same period was not there. I need to chase up what's happened...incomplete prescription written, or incomplete prescription filling.
It is highly unlikely that you will find an Endo who is able or willing to prescribe NDT on the NHS. They are simply not allowed to. Yes partly due to cost but also because it is an unlicensed drug in the UK. In USA it is grandfathered - hence does not need a licence . I have switched from NDT To a T4/T3? Combo - prescribed by an NHS Endo and dispensed on the NHS. Now that the dose is stable this is working well.
This might be a better route for you ?
Even if you find a private Endo to prescribe NDT (and they too are diminishing) you will need to pay for your own meds.
I've tried and failed for over 5 years on T4, T3 synthetic i simply can't stomach the stuff, I have several gastric issues this medication makes them worse.In 5 years I've never reached good levels of T4, T3 because of absorption issues.
It proves it as I've been on this ndt medication for 15 days..no gastric issues of any kind no bad headache no bad metallic after tast NOTHING!
But what do you do if like me you can't afford a private prescription?
I'm registered disabled and received disability, there is no way I could find that kind of money every month, and then on top get my bloods done privately.
It's about time the nhs got there heads out of there backsides and actually help patients, if ndt works for a particular number of people then it should be made available to us , do they not understand by pushing us on to a drug that doesn't work they are just creating more work for the nhs , because we will alway be trying to get well on a drug which will never do that for some of us.
By refusing to supply ndt they are segregating us who can't take the synthetic
form and that's not caring for patients in my book😡
I’m assuming you’ve tried different brands given that it’s often the fillers that cause problems not the actual medication. I’m intolerant to cows’ milk so it’s recorded on my notes which brands are lactose free.
Have you tried liquid T4 and T3? These are often better tolerated containing less additives etc. There are also TCaps which are widely used in France.
Ensurinh that all your vitamins D, K, B12, folate, ferritin etc are all optimal will improve / aid absorption too.
I've tried everything I'm lactose intolerant and have reactive colitis, I've had the oral suspension levo and that was actually worse , I vomited it back everytime I took it.Because I'm lactose intolerant there are not many thyroid medications to choose from and everyone I was put on just reanimated my reactive colitis it was sheer hell being on the synthetic stuff, I'm much better now I'm off it .
The cost to the NHS of all this stupidity just grows and grows and seen as a very lucrative cash cow and bigger bottom line profit margin for Big Pharma who actually encourage the pig headedness and situation we find ourselves in.
I'd be happy to pay the NHS a surcharge if their first treatment - the cheapest option - didn't restore my health and well being -
and then have a guaranteed supply chain and be treated as just another patient who takes a different form of thyroid hormone replacement - whether a combo of synthetic T3/T4 , T3 or NDT. which lets face it was the situation up to around 2000 :
I now feel ostracised for asking questions and now forced to self medicate
- and left with the uncertainty of ' what if my ' supplier ' disappears - as though I'm now a drug smuggler.
I paid into the NHS a full stamp for over 40 years and because of a NHS medical intervention I now find myself having to save from my single person state pension to keep myself well enough to have some life rather than how the NHS would have me be on T4 monotherapy.
That resonates so much 😔 I cannot fathom out the nhs....they are always complaining about not having enough money to fund it, but yet they wast millions on stupid things and more on not treating the patients correctly, inevitably keeping us going back and forth to the nhs to try to gain some correct treatment, and try as we may to get our health back.
What the heck are these so called nhs consultants [ or fat cats 🐱 as I like to call them] doing!!! They are paid thousands each year as consultants and the nhs are no better off....let's slash there wages save some money that way😡
My father was a GP in the 50's and 60's, and he was on call 24/7. He had to find a local replacement if he wanted a day off. He then became a Medical Officer of Health and pushed paper around for 35 hours a week for a lot more money.
I get Thyroid-S and it costs £155 for 500, so if my maths is right, 31p a pill. I take 3 a day so just under £1 a day. I am on the lower rate pension, so have to save up, but it does mean I feel half way to normal, and am not reliant on the ignorant GP who goes by TSH alone and panics every time the TSH comes back as 0.02. I now say "oh, thats normal for me" in a breezy way and he grunts but does not argue further.
Somewhere between ignorance and lack of care for patients with thyroid problems means we have to find our own way. Thank goodness I found this site!
I found I was wasting my time with the NHS endocrinologists, and one of them that they sent me to wasn't even an endo. The rest seemed to know about diabetes and not enough about the thyroid.
I have tried other private endos, but the lady doctor I'm seeing now has been the best. She's not an endocrinologist but a good doctor with other qualifications. She has hashi-motos, so she knows how to help. She's more concerned about the ratio with your T3s and T4s than your TSH; mine has always been at zero since RAI, regardless of what my T's are doing.
She's private, but the fees are reasonable and listed on the website, and you pay a pharmacy to send your meds to you. I've been with her for about 18 months and am improving; my T3s and T4s are climbing! Woo-hoo! She believes in the right supplements and is just an all-around great doctor.
Send me a message if you want the link to her website.
The ratio in Natural Desiccated Thyroid is 1/ 4.22 T3/T4 which suited very many thousands of people since around the late 1800's until around the late 1950's when Big Pharma launched its synthetic treatment options, T3 and T4, on the back of NDT and then went about gaining market share.
I'm very sure this is why the nhs won't pescribe it , the synthetic stuff is cheaper , how can they say ndt is unstable and untested when thousands of people were well on it before the synthetic stuff came along 🤷♀️.
Total gaslighting , because I'm on it now through private prescription paid by my son😡 so what's going to happen to me if I continue taking this unstable untested thyroid medication??? .....nothing I suspect ..only the fact it my bring my thyroid levels into good range something the synthetic stuff never has😡
Been on it 15 days now🙌🙌 no problems, be interesting to see my blood work in a few weeks time👍
Cost is without doubt the biggest reason for the NHS not prescribing NDT. But they also have an excuse, because it's an 'Unlicensed' medication, so any prescription is at the responsibility of the prescriber.
When prescribing an unlicensed medicine, you must:
a. be satisfied that there is sufficient evidence or experience of using the medicine to demonstrate its safety and efficacy
b. take responsibility for prescribing the medicine and for overseeing the patient’s care, monitoring and any follow up treatment, or make sure that arrangements are in place for another suitable doctor to do so
c. make a clear, accurate and legible record of all medicines prescribed and, where you are not following common practice, your reasons for prescribing an unlicensed medicine.
No, never licensed. It was the only available medicine for hypothyroidism long before licensing became 'a thing'.
Once synthetic levo was invented, tested and then licensed, they gradually changed people over from NDT to levo. This, at the time, was considered to be 'major progress' into being able to make a 'proper' medicine. Not an unstable animal based product.
This is why they keep spouting the same old rubbish about there being no evidence to prove it's safe. It's not been prescribed for many decades, no modern day trials done, so no proof or evidence to demonstrate its safety and efficiacy!
I understand what your saying 👍 the lady as roseway labs told me I will take sometime for your body to adjust to it , plus your TSH is 45.66 atm so you will no doubt need an increase at some point.
OK - the TSH is not important - you need to track on your T3 and you may find your T4 is low in the range - as NDT does not present in the same way as synthetic T3/T4.
Sorry both T3 and T4 are very low T4 was 10. ..and T3 was 3,2 .. along with the TSH of 45.66.But at least by getting my bloods done privately [ medichecks] I can be sure T4, T3, are done👍
But as I say it will be interesting to see what my T4, T3 will be after taking the ndt👍
GPs are not thyroid specialists and, as already noted, must follow NHS guidelines. Thyroid medicines can have very serious side effects and need very careful monitoring. For Levothyroxine TSH can be a useful guide but for NDT it definitely isn't. You need a whole new set of monitoring guidelines.
My experience is that NHS doctors cannot normally treat anyone with an initial TSH value of <10 and then only with levothyroxine. To step outside the guidelines would be risky.
My experience of taking NDT privately is that the drug and the checks are very expensive. Also NDT brands may have different amount of T3 and T4 and there have been problems with consistency in the past.
My experience of starting on NDT at a low dose is that the T3 in NDT will quickly reduce your levels of TSH so that if you do not increase your dose quite rapidly you will become more hypothyroid initially with consequent symptoms. (T3 has a short half- life in the body and your T4 will have been reduced by lack of TSH).
One consequence of the above is that if you are prescribed NDT and told to report back with a blood test in two or three months you will suffer in the interim. The alternative, which is the right way to do this, is to start on a low dose and have a blood test and a review every two weeks until your T3 T4 levels are getting up to speed. This is expensive and time consuming for both you and the doctor.
My local GP seems very good. When I had a recent blood test my TSH was 0.002 and he was concerned. I sent him a note from my private thyroid doctor which explained the reason for the low value. Note though, that as my GP, he was bound to investigate the low TSH and to be certain that I was not injuring myself with the treatment.
Maybe the NHS needs to take a whole new look at this but any changes could be extremely expensive (millions of people in the 3 to 10 TSH range), Also levothyroxine generally works OK in most cases. NDT very expensive (look at how its made)!
A NHS endocrinologist told me that having a lowish thyroid level would generally lead to a longer life due to less biological stress.
For heavens sake any medication you take today you are told of any side effects it may cause.
And yes I'm in the category of levothyroxine not working for me T3 either , my body just won't accept it 5 years trying 😡
So we're in 2024 wouldn't you think they would have worked out this consistency problem by now🤔
They don't want us to take a medication that as a consistency issue ect, but insisted we take an injection that had hardly been tested for human use....that's the good old nhs for ya😡
An endocrinologist, did they perhaps have diabetes specialist on the letter because they are foremost diabetic specialist frist then thyroid second .
As for careful monitoring....After full thyroidectomy due to graves thyrotoxicosis I was put straight on t4 levo, in the first few months my levels were appalling I kept telling these specialists I couldn't stomach it, I had bad diarrhoea, cramping, intestinal inflammation, bad headache, an awful metallic taste in my mouth especially in the morning which made me wrench .
My T3 was so bad after a year I was put on T3 only with much the same results nothing was done , monitoring no!! If it weren't for me constantly complaining the specialists and gp would have just left me.
My gastro as now confirmed its the synthetic version that is causing my reactive colitis to flare up and as written saying I should not be given the synthetic version ..so upshot I can't take the synthetic version...so how do I control my thyroid hormone levels?
I'm now on ndt by roseway labs 15 days and counting, no awful gastric side effects no bad headache no awful metallic after taste, gastric wise it seems to be working I was very hyperthyroid [ graves thyrotoxicosis] so I know what over medicated would feel like.
By lowish thyroid levels do you mean low t4, t3 or just lowish TSH
When are you back with your gastro team? I think these are the ones that need to back you about ndt and the do leg work in finding a endocrinologist who could prescribe. If your tsh reduces, ft3 increases, you have no gut issues and you feel good then this should be all the proof they need that ndt is required.Have you asked on forum of anyone local to you who is on ndt via nhs or is absolutely no one being prescribed?
I really feel for you as you've likely found the solution but just can't get it prescribed..so frustrating, I know, I've been through it with T3
I bought my own T3 for about 9 years roughly costing about 5k+. I was prescribed it in the beginning but Mercury pharma t3 made me so ill and was no other alternative offered, also didn't realise at the start I couldn't tolerate t3 if I had t4 still in my system from taking thyroxine.
I'm lucky now my endo prescribed my t3 when I asked the other year. The issue was getting hold of uni-pharma t3, the cost and was so scared changing brand. This turned out to be correct as was given Mercury pharma at the start and made ill yet again.
Why is it a constant battle to get the medication you need? Is it like this for people with other disorders, fighting to get the right type, brand of meds to feel normal..it's so wrong 🤷🏼♀️
Firstly I feel for your situation to❤️ but as you so rightly said " why should we have to fight to get our medication "
I posted about 3 people I know one being a friend who are diabetics I asked each of them
" do you have trouble getting your medication"?
No was the answer
"Are you happy with the way your endocrinologist treats you"
Yes was the answer.
My own mother had heart problems and was also hypothyroid she was on several medications , I collected her prescription for her when she develop MND I never had any trouble with her medication, and if she had to have a new one or one changed it was there at the chemist for her no " ho we cant get that at the moment or you'llneed to go backto your gp 😡.
When I was on T3 lactose free I was nearly always given the T3 which contained lactose, eventhough it stated I had to have the lactose free ones, then they started saying they could not obtain it😡😡 as I couldn't stomach it anyway I just give up.
But you know if you were taken in to hospital and they say your thyroid levels were awful they'd tell you off for not taking your thyroid medication not realising you cant stomach it...nuts🤪
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