Update on me taking NTD..πŸ‘: Hi everyone ❀️ Just... - Thyroid UK

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Update on me taking NTD..πŸ‘

birkie profile image
birkie
β€’53 Replies

Hi everyone ❀️

Just a little up date on how I'm progressing on the roseway NDT capsules, I'm now on day 12 and so far I've had no stomach or intestinal problems πŸ™Œ Ho!! how nice it is not to have ANY diarrhoea, cramping, inflammation in my bowels no metallic after taste , no headache or acid wash back and although that strange vibrating sensation I mentioned in my legs ankles as not entirely gone it has at least lessend and I'm really hoping it continues.

I can eat without having to run to the toilet , my appetite as returned to I'm not expecting miracles after only 12 days but I did have enough energy to tidy my spare bedroom yesterday πŸ‘ feeling it today though πŸ˜„ but I feel this thyroid medication may actually work for me.

I was advised to take the powder out and discard the capsules as she thought it best to eliminate anything I may have a reaction to , ive not increased as yet [on 0.5 one grain] but will do this after 14 days 2 grains or capsules, and been advised to get my bloods done after 7wks so onwards and upwards πŸ‘

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birkie
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pennyannie profile image
pennyannie

Hey there :

Thanks for the update - been looking out for you everyday since you started this trial :

RedApple profile image
RedAppleAdministrator

This is soooo good to hear birkie! 😊

HealthStarDust profile image
HealthStarDust

Are you solely on NDT now? What brand is it?

Great you feel good. Long may it continue.

birkie profile image
birkieβ€’ in reply toHealthStarDust

Yes on NDT but think it contains T4 and T3 I'm not up on ndt but in the leaflet I think it gives % of T4 to T3 πŸ€” am sure helvella will know the ratio πŸ₯° There appears to be no branding it's from rosway labs the clinic made the compound up for meπŸ‘

HealthStarDust profile image
HealthStarDustβ€’ in reply tobirkie

Ah! You are taking compounded NDT.

birkie profile image
birkieβ€’ in reply toHealthStarDust

Yeah from the discussion I had on my consultation she said she was making a compound up for me of NDT and it wouldcontainboth T3 and T4 a percentage of each one grain to begin with.

HealthStarDust profile image
HealthStarDustβ€’ in reply tobirkie

I may be wrong, but I think all compounded means in lay person terms is that it is personalised to you. So, it may contain very little fillers for example, and the dose is usually specific to your needs.

birkie profile image
birkieβ€’ in reply toHealthStarDust

Yeah that's why it was made up for me, I cant stomach synthetic t4,t3 been trying for 5 years since full thyroidectomy in 2019, I have reactive colitis and are lactose intolerant, I think she's started me on a low dose to get my body accustomed to it, then I've to increase , but my main fear is getting the nhs to pescribe ndt as I can't afford to pay for, it my son paid for this lotπŸ₯°

helvella profile image
helvellaAdministratorβ€’ in reply toHealthStarDust

Such things have been extremely rare within the UK.

In the USA, compounded should mean that Thyroid USP (the powdered and standardised thyroid gland) is mixed with some neutral substance, and usually filled into capsules. All sorts of things are possible - rice bran, magnesium stearate, and others.

That should lead us to expect 38 micrograms of T4 and 9 micrograms of T3 in what has been compounded as one grain.

However, we have heard of some USA compounders actually just using synthetic T4 and synthetic T3 in the same quantities (38+9) and leaving customers to believe it is desiccated thyroid - when it isn't.

Regardless what they do, the capsules should be produced to order for the individual patient.

However, we have also heard of some compounders actually not making the capsules to order but doing small scale industrial-type runs. The USA's FDA was very annoyed about that - even small bulk runs require manufacturing licences.

On top of all that, the USA's FDA either has, or will be, banning compounding of products based on desiccated thyroid entirely.

pennyannie profile image
pennyannieβ€’ in reply tobirkie

As I understand things - the base product is dried powdered pig thyroid and sold as Thyroid USP ( Porcine) ( Powder ) with the ratio detailed as being 1/4.22 - T3/T4 :

Bertwills profile image
Bertwills

so glad to hear that you’ve made progress. I hope the NHS steps up to pay. Best wishes.

arTistapple profile image
arTistapple

Birkie I know you don’t know for absolutely sure about NDT yet but if I were you I would be thinking in advance of your strategy - about what to do to get it on the NHS. It will still be an uphill road.

Think waveylines .

birkie profile image
birkieβ€’ in reply toarTistapple

Hi❀️

I've just posted about receiving a phone call from my gp who was referring me to Newcastle as I explained to her Newcastle don't pescribe NTD, she as now confirmed this but as put the ball back in my court I've to find an endocrinologist that will pescribe it.

OK...but doctor my TSH was 45.66 on May 31st [ my surgery and gp does not know I'm on a private prescription for NDT] as far as they are concerned my TSH will just increase and they are not at all bothered about it😑.

Would you class that as neglect in care?

I've written to practice manager stating my concerns over the lack of care over the last 5 years by the surgery in relation to my condition, I have stated we are now at a crossroads with my care as I have tried and failed with the medication the surgery and endocrinologist have given me [ synthetic T4, T3] I feel it is now time the surgery looks into alternative thyroid medication I have mentioned NDT as the alternative and would like to be seen by an endocrinologist who pescribes it.

If this is not resolved I will be taking this matter further as I am now very hypothyroid and this will only continue making me ill the longer I go without the correct thyroid medication.

I really have no faith I will receive a response so it may well be I need to complain to a body within the nhs about my treatment πŸ˜”

arTistapple profile image
arTistappleβ€’ in reply tobirkie

Good birkie. I had high hopes for a change in treatment after seeing someone locally. No dice. So like you (until now) I am in limbo.

I do hope someone who has managed to get NDT on the Forum lets you know who might be important in getting it on the NHS.

If you are not already on benefits (e.g. attendance allowance - but you might be too young for that- don’t know anything much about PIP or Universal Credit but all possibilities) it would be a good idea to claim it. The government do not monitor what you spend it on, so this could be used to buy your NDT.

Good luck M’dear. I am watching and hoping you get on just fine!

birkie profile image
birkieβ€’ in reply toarTistapple

Hi

I'm on universal credit and pip due to my disability, but truly I'm just getting by , contrary to belief its not much money really, especially with todays higher cost of living.

I've been travelling back and forth between Carlisle and Liverpool for my hyperparathyroidism, a lovely lady there asked me if I was claiming my travelling expenses back πŸ€” I had no idea you could I said so she as given me a form which I've filled in......now I have all my specialists appointment letters but only found a couple of train tickets, but I'm going to apply for the expenses, if I get some money back it will at least maby go towards another month's supply of NDT from roswayπŸ‘ if I meet the criteria that isπŸ˜€

birkie profile image
birkieβ€’ in reply toarTistapple

Can I ask what your doing now?

Are you taking any thyroid hormone replacement?

How are you feeling?❀️❀️❀️

arTistapple profile image
arTistappleβ€’ in reply tobirkie

I am not in a good place really. When I saw this new endo (as usual) I had high hopes. He talked about his strategy and how did I feel about it. It was a bit contrary to info on the Forum but I was definitely raring to go. However after two promptings and a five week wait. He decided he was not going to treat me. He said he would look again when the heart thing was sorted. Only the heart thing can’t really be sorted!! Because it’s caused by hypothyroidism (IMO) which he now won’t treat!

Cardio have been of little use, offering interventions which research says not good outcomes for my condition!

In the meantime I cut my Levo down in part preparation for the new prescription, so now I must put it up again as my symptoms are off course worse again.

I have said a few times recently - I think endocrinology exists only as an apparition. It does not seem to exist as any kind of service especially for those of us on the Forum. It’s RIP (retired in post). Noticeable only by its utter absence it seems to me. This specialism does not have the courage of its own convictions/ignores its own research etc etc. An awful lot of bumbling at best. AND every other specialism seems to quite happily ignore them. Ideal niche for not very good doctors IMO. In saying that this guy was an absolute gentleman. I liked him. I am always worse duped by those I actually like!

If my symptoms on T3 (which have continued even being off it for months) were not so scary, I would just go ahead and self medicate. I may still do that at some point. A β€˜tipping point’ may occur.

birkie profile image
birkieβ€’ in reply toarTistapple

My goodness TistappleπŸ˜”

It's amazing how little these so called specialists know about thyroid conditions, it's funny you should mention your heart because way before I was diagnosed with hyperthyroidism my heart went nuts, beating fast ..way to fast, gp sent me to the heat specialists who did a load of rather expensive testsπŸ™„..[ here we go..more money wasted by nhs incompetence].

He said "there is actually nothing wrong with your heart apart from some calcium deposits [ calcification ] this is actually due to untreated high calcium in hyperparathyroidism which I have πŸ™„ but he never linked it to...typical]

But OK nothing really wrong with my heart.. but writing out a report telling my gp to pescribe statins and another heart tablet πŸ™„ to which I refuse, he was most annoyed πŸ˜‚

I said.." if there's nothing wrong with my heart why do I need those tablets"

For prevention he saidπŸ™„

When I finally got my diagnosis of graves and my thyroid was removed my heart went back to normal, apart when my calcium goes over then it beats fast again.

Why are they soooooo bad at there jobs?

Good god..I'm an x Estee lauder make up lady, if someone came to my counter to have bridal makeup done and left looking like a circus clown..I'd be sacked on the spot, why are these specialists/ GPS ect treated like gods?

There more like Hannibal Lecters😑

arTistapple profile image
arTistappleβ€’ in reply tobirkie

You have highlighted something interesting I never gave a moments thought to - your calcium levels found in your heart. Me too. I have spent a bit of time checking out the cholesterol angle. Really it’s the calcium that’s the problem in the heart NOT cholesterol. There is no component of cholesterol that contributes to calcium build up. Calcium builds up because the endothelium is already damaged. Damaged by - you guessed it! Thyroid issues! As we keep finding ourselves saying β€œYou could not make it up”. Somehow we don’t need T3 (or NDT) AND it’s dangerous! AND yet High T4 levels and Low T3 have recognised poor outcomes, no matter the nature of one’s illness. Yes my heart symptoms are normally seen in hyper but as we all know hypo/hyper can be one and the same. I want to be pretty angry but just at the moment I need to β€˜recuperate’ from my very bad news. I am now at odds with endocrinology, cardiology and my GP. So who the hell next?

Many years ago a cardiologist undertaking an angiogram on me, said then he considered stents (no calcium then) but he thought the folding in my arteries would just move elsewhere along the vessels. I looked him up today and he has actually done some research since - now retired unfortunately. He was accompanied by one of our not so favourite eminent endos named on the research. How can this happen? This other guy is a complete β€˜Naysayer’ with whom we are both well acquainted. What on Earth is done with all this research? It seems to mean nothing.

Remind me how did you find out about your hyperparathyroidism problem?

I feel a letter coming on!

birkie profile image
birkieβ€’ in reply toarTistapple

My hyperparathyroidism is also a long winded story thanks to the nhs😑 became really ill in 2004 thought perhaps it was a water or kidney infection after a weeks of no recovery my mother got the gp up as I was bedridden. He diagnosed a water infection and put me on antibiotics, roll on the next 2 weeks I'm now vomiting weeing for England sweating, again my mother gets him back he changes the antibiotics for different ones, anyway after around 5wks we get him back and I finally get bloods done, he comes to see me and tells me I have primary hyperparathyroidism.

Never heard of itπŸ€·β€β™€οΈ and after another set of blood tests he sends all info to endo who agrees I have primary hyperparathyroidism but decides to do a watch and wait approach.

Did nothing of the sort , they never kept an eye on my calcium levels and just left me I found it impossible to return to work I just couldn't do my job anymore, my surgery wouldn't help so I moved to another and got diagnosed with chronic fatigue, fibro , ME..lost my job and ability to earn.

Fast forward to 2018 diagnosed with hyperthyroidism then graves in 2019 lost my thyroid, in 2020, I look at my thyroid bloods my calcium is also on there and it's over range 2.67 I ask why...ho it's only mild don't worry 😑 I do!! then look back on other calciums, after I get printouts I find at least 15 over range calcium going back over the 2 years then get my medical records and find more.. one at 2.89😲 and no pth was ever done along side them..hell I wasn't even told about them..[ I now get every bloody printout] .

Again endo looks over them and again says I have primary hyperparathyroidism πŸ™„ as you say..YOU JUST CANT MAKE THIS STUFF UP, and again they want to do watch and wait...watch for what?? I've already had and passed kidney stones, got ostiopeania, calcification in most joints and heart..due to untreated calcium depositing in my blood stream, due to high calcium levels , then I get a letter back from endocrinologist who now says there is no indication you have primary hyperparathyroidism πŸ˜‚

One she's either crap at being an endocrinologist and 2 she's gaslighting me

My son again forks out money to send me to a private parathyroid surgeon I get the diagnosis of primary hyperparathyroidism, and since 2021 we have been looking for the adenoma by scans [ not private as I couldn't afford that nore could my son] so it was back to the nhsπŸ™„ but I'm in Liverpool with another parathyroid surgeon, she's doing her best but is restricted by nhs rules regarding primary hyperparathyroidism, in that the lovely nhs want your calcium to reach the golden number of 2.85 and a target ..the adenoma before they will even think about operating on youπŸ™„..so again the nhs rule the life you have, I would love to have enough money to have to op because I've been told I need the 4 gland exploration, but nhs won't do it😑

All this on top of my ongoing thyroid medication saga to😑😑😑

Sorry for the long reply but it's a flipping saga😑

arTistapple profile image
arTistappleβ€’ in reply tobirkie

Birkie more to think about. I have never looked at my calcium levels. Daughter recently had kidney stones removed. Perhaps a connection after all.

How I hate getting out all my medical records all the time to check. It’s become a trial in its own right. So far my medics have had a 100% success record in utter failure.

birkie profile image
birkieβ€’ in reply toarTistapple

I can tell you through my experience gps really don't bother if you yourself dontπŸ€·β€β™€οΈ I thought it would have been my gps duty to tell me about my over range calcium..but no he never did...so I will never trust any of them again😑

Perhaps it may be of some use to go over any calcium blood work you have , I know what you mean about looking over medical records, I go cross eyed everytime I get them out πŸ‘€πŸ˜„

arTistapple profile image
arTistappleβ€’ in reply tobirkie

Yes I realise at this late stage medics don’t alert you to anything. Perhaps diabetes or Statins only! Even when we alert them, they are not alerted. Chumps.

waveylines profile image
waveylinesβ€’ in reply toarTistapple

"Even when we alert them, they are not alerted."

Brilliant stuff - genius- think I'm going to order a sign from Amazon with that statement on it! And hang it near my laptop to remind me when I'm typing my mutiple responses. Maybe add a sleeping 'person' image next to it.

birkie profile image
birkieβ€’ in reply towaveylines

πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚ Good idea But it's tantamount to neglect when a gp sees an over range anything and doesn't inform you, and am afraid to say not everyone gets printouts of there bloods....my son included 🫣 I kept asking him " so what were you blood results "

" no idea mam"πŸ™„πŸ™„πŸ™„πŸ™„

waveylines profile image
waveylinesβ€’ in reply tobirkie

Birkie I've PM you.

I've not found an Endo in England who will prescribe ndt on the nhs, private yes. It's mainly because following the NICE guidelines giving ICBs the choice to allow prescribe or not I think they've all said no....as it saves money they think. And then instructed their nhs endos to not prescribe inhouse or to out of area patients! GP surgeries in my area have also said no now to prescribing as part of shared care. Leaving no option but for private treatment. In my ICB the endos can't prescribe liothyronine either. It's a one stop treatment of levo only based on TSH testing - if that doesn't work tough seems to be the mindset.

birkie profile image
birkieβ€’ in reply towaveylines

Hi Waveylines❀️

I read your message, doesn't seem I'm going to fair well trying to obtain ndt from the nhsπŸ˜” but I do have a gastroentrologist on my side who agrees the synthetic medication is flaring up my colitis, he wrote the report to my gp.. in it he says.. I should not be given the synthetic version as he as have seen proof it is giving her terrible bowel and stomach issues with absorption issues also, she would fare better on a natural form with no fillers.

As for my son paying for my thyroid medication, his not able to keep doing it as both himself and his girlfriend are saving for a deposit for a mortgage.

But the very thorough of a family member paying for my thyroid prescription is letting the nhs off there obligation to care for me , it's not my sons job to do that, believe me if I could afford to pay for my own thyroid medication I would and never darken the nhs door again 😑

But I can't, I'm registered disabled, I get disability living allowance which is not a lot,I can't work I'm stuck in a perpetual loop by the nhs the very institution that was formed to help usπŸ€·β€β™€οΈas you also seem to be waveylinesπŸ˜”

Do thy not realise if a certain medication makes us well then that medication should be made available to us.

As for it being unreliable and perhaps dangerous, untested ntd

The nhs had an injection run out all over our country urging us to take it eventhough it only had 12 months testing fase😑

Double standard nhs😑

waveylines profile image
waveylinesβ€’ in reply tobirkie

So well put Birkie!! I totally agree. I will keep fighting for ndt. Go to your MP and start a complaint. Get an Advocate from PALS. You have clear evidence of need, extenuating circumstances.. if you cant tolerate the synthectics I dont see how the nhs can argue against. This is how Ive landed being sent elsewhere.... Who knows where that will lead to x

Brightness14 profile image
Brightness14

Just good news for you I am more than pleased that something seems to be working, great.

FoxyTed profile image
FoxyTed

hi birkie, just to say it’s great to read that someone is feeling better and things are on the up !! Best wishes

sparkly profile image
sparkly

Oh that's brilliant news, i'm made up for you. After 12 days you would have known about it if not suited. I really hope this is enough evidence for gastro and endo so that you can get prescribed on nhs now. 😊

SlowDragon profile image
SlowDragonAdministrator

Brilliant news birkie

πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘

Wua13262348 profile image
Wua13262348

I too have been watching for a post from you to say how you were getting on with the compounded NDT. Delighted you are tolerating it Birkie. Such good news!

Surely the NHS can use, or must have, a compounding lab somewhere in the system? They seem to outsource everything, however.

helvella - I posted recently that Brillpharma liquid levothyroxine had been PURGED in Scotland, though it is still being supplied in England. I did an internet search to see if there was , or had been a recall on it. What I did find per this search, was a company I had never heard of that had done a voluntary recall on their liquid levothyroxine as it was at least 10 times the potency stated, if I remember correctly. I was gobsmacked it was not a mandatory recall, but voluntary on the part of the company. The only possible customer that I can think of for their product is hospitals , which would be NHS. Based on this, it would appear that NHS hospitals might be ordering in unlicensed thyroid hormones for use in the NHS hospitals.

OR , maybe the company supply a raw ingredient to licensed manufacturers of liquid levo? It was very strange.

Surely an NHS hospital should be able to supply compounded NDT, from somewhere in the NHS network, and if they can't, have the scope to obtain it from Roseway labs or similar, where there is proven clinical need that synthetics are not tolerated. Surely "compounded" NDT, where made specifically for an individual's unique requirements, must be a loop-hole , as there is a proven need -to -supply. There must surely be compounding labs with"approved" status to supply compounded medication. Armour NDT is an import and unlicensed. There surely must be a company "licensed" to supply a compounded NDT.

The NHS have already supplied a "special" from Quantum Pharmaceuticals for liquid levo for Birkie , which did not agree with her. I believe this is the "specials division" of Zentiva. The NHS can, and have previously supplied a "special".

An aunt of my ex husband's, long dead, was type 1 diabetic, insulin dependent. She could only tolerate pig insulin, not bovine. Whether synthetic insulin was available then, I do not know. I did an internet search, a few minutes ago, and the internet states that one company supplies animal insulins, pig and bovine, in the UK, and that is Wockhardt. Whether it is as difficult for diabetics to get animal insulins, as it is for thyroid sufferers to get animal NDTs, I do not know.

It therefore, appears that Wockhardt, MIGHT be an approved supplier of animal extracts for use in prescriptions in the UK. Is it then likely, based on this , that compounded NDT is a viable prospect and that Wockhardt are licensed to supply??????, even if only the raw ingredients to a compounding lab???

I think you need to speak to your M.P. about this, Birkie as you now know that you tolerate the compounded NDT.

birkie profile image
birkieβ€’ in reply toWua13262348

I've just phoned a friend of mine in relation to who the hell is our mp in the copeland area [ Cumbria] I now have her name πŸ‘

But riddle me this....if for any reason I was to be admitted into hospital and I ran out of my NTD but still of course needed to take my thyroid medication what would they give me if the nhs DONT PESCRIBE NDT? Especially if I was to be in hospital more that 5 days ?

If they gave me the synthetic stuff they would in effect be giving me a medication I cannot tolerate , I'd end up with all the same gastric issues ect ...probably ending up being sicker than I was when i first went in... and everytime ive been in hospital they have taken my medication off me and given my there medication πŸ€¦β€β™€οΈ

So yes they must have something... wouldn't it be the same if you were on T3 only and were taken into hospital ? They just couldn't pop you on T4 πŸ€” mind you I wouldn't put it past them😑

Wua13262348 profile image
Wua13262348β€’ in reply tobirkie

I think there is a good case for always carrying some of your NDT in your handbag and keeping the packaging for your NDT as proof you have been on it, as you do not ever lay hands on the paper prescription to photocopy, as your Roseway prescription is electronic, and in-house. The NHS would either give you nothing or whatever thyroxine tablet they had on the premises at a totally guesswork dose, but likely 25 mcg , mistaking you for a geriatric mouse.

If in hospital, I'd suggest phoning a friend (Who wants to be a Millionaire), in the form of the Roseway Labs prescriber, and ordering a new prescription. Make sure you have a credit card if you don't already have one, to pay for the prescription. You will likely need your mobile phone to click on a link to make payment. That's the unpalatable reality of the situation, I'm afraid!

waveylines profile image
waveylinesβ€’ in reply tobirkie

There lies a conundrum and why hospitals ask you to bring your meds in with you and check yo make sure you have!. I was told by my local nhs Endo when my GP stopped my ndt that he had gone to highest levels and it had been agreed to give me a short supply of liotbhyronine whilst I changed back to levo.....the levo that doesn't work for me! I refused and thought if they can agree to lio they CAN agree to NDT....but down to the ICB who are not medics. In other words I think you would find it would all get lost in beurocracy with doctors hiding behind we are not allowed. And the powers that be aka icb we are not medics! I mean my GP has been happy to leave me without thyroid medication for nearly 6 months without so much as a look. Written his letter....saying no....job done. In writing agrees I'll die without thyroid neds. I assume hes waiting for me to collapse.....who knows! No wonder thry got rid of the hippocractic oath!

helvella profile image
helvellaAdministratorβ€’ in reply toWua13262348

Can you let me know more about the super-potent product?

I get alerts for recalls but have not seen that!

Feel free to send me a Private Message.

I do not think that any UK company has a product licence for desiccated thyroid. Nor could they get one without a lot of cost and work.

MHRA repeatedly claim that all UK licensed products are in their products database. (There are some oddities with respect to products that were originally licensed in, say, an EU country being allowed here. One reason that Product Assessment Reports are a bit patchy.)

But ingredient manufacture is a whole different issue - one which I have not yet fathomed.

birkie profile image
birkieβ€’ in reply tohelvella

Helvella can I ask you what is dessicated thyroid ?What I'm I taking?

I though was taking natural desiccated thyroid compound made up by roseway labs, if no one is licensed in the UK to distribute it again what am I taking I'm a bit confused πŸ€”

helvella profile image
helvellaAdministratorβ€’ in reply tobirkie

Desiccated thyroid is cleaned, dried animal thyroid glands - powdered and standardised.

The standardisation process means that they measure the T4 and T3 in batches and blend different batches - together with a powder to dilute - as needed. Various substances are allowed, lactose, sucrose (ordinary sugar) and several others.

Just because no-one is licensed to distribute any desiccated thyroid products in the UK - whether as ingredients or finished products - does not mean that such things cannot be imported and sold. But the legal responsibilities, the paperwork, the costs are all different.

The Danish company Biofac and the Spanish company Bioiberica are known to manufacture desiccated thyroid powder. And another company is involved in the international trade in this powder.

I have absolutely no idea whether Roseway would be getting it from one of the companies or, as a small company, they might have to buy from distributors - possibly in the USA.

birkie profile image
birkieβ€’ in reply tohelvella

Thank you for thatπŸ‘I've just read the leaflet that came with the medication and it says ..compound natural desiccated thyroid capsules

It says natural desiccated thyroid capsules is often prescribed as part of thyroid therapy, the formation is made up for the patients needs this can be because of an inability to take synthetic thyroid hormone .

Obviously what ever compound they have made up for me so far it's working no gut or stomach issues or morning headaches or metallic taste and no acid wash back .

If roseway can get it why can't the nhs?

Ugh!!! Cost I suppose 😑

helvella profile image
helvellaAdministratorβ€’ in reply tobirkie

I don't think it us just cost, though. Almost the whole UK endocrinology establishment dismissed desiccated thyroid - largely due to their claims of its inconsistency around 1980.

helvella - The End of Thyroid BP

A brief note of one public statement about the final withdrawal of the UK product, Thyroid, BP. I suspect it summaries the attitude of the time..

helvella.blogspot.com/p/hel...

birkie profile image
birkieβ€’ in reply tohelvella

I was aware they discontinued it but was unsure whenπŸ‘Wouldn't it be an interesting study to do to see how many people on ndt suffered because of inconsistency πŸ€”

A endo recently told me it was withdrawn because of mad cow disease cjdπŸ˜‚so this endo didn't really have any idea why it was withdrawn , also its pig thyroid not cowsπŸ€”...the gaslighting was off the scale with this endocrinologist 🀑

helvella profile image
helvellaAdministratorβ€’ in reply tobirkie

The irony being that the old standard Schilling test - used for proving Pernicious Anaemia - did disappear due to mad cow disease. I suspect a bit of ignorance and conflation.

Since 1980, the laboratory testing of desiccated thyroid has changed completely.

They used to base it on the amount of iodine it contained - because they literally couldn't test for T4 and T3. But since then, they have introduced direct T4 and T3 testing (much like what they use for testing our blood!). Far, far more consistent and reliable.

I suspect many of us have seen where individual doctors have referred to the glands of individual cows or pigs varying - so of course desiccated thyroid varies. With not the slightest recognition as to how silly that is.

birkie profile image
birkieβ€’ in reply tohelvella

πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚ totally agree helvella πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚

Wua13262348 profile image
Wua13262348β€’ in reply tohelvella

It was a levothyroxine oral SUSPENSION, various strengths. IPS PHARMA:Vertical Pharma Resources Ltd.T/A IPS Pharma, and published 27/2/23. It was for dispensing GP practices, General Practice, Pharmacies. It was 10 times the potency stated.

If you google, Company led Medicines Recall: Vertical Pharma Resources, 27/2/23 it gives all the detail. I was flabbergasted that it was not a mandatory recall, but company led.

10 times potency! Rocket fuel!

helvella profile image
helvellaAdministratorβ€’ in reply toWua13262348

Ah!

Right - because they (supposedly) can track to the individual patients, that is why.

Truly terrible. But interesting that they waffle on about no obvious patient issues... That really does make me wonder about the individuals who got it. Are they massively under-dosed?

Wua13262348 profile image
Wua13262348β€’ in reply tohelvella

It surprises me that the NHS were prescribing "suspensions" in the first place. During a total absence of any brand or strength of liquid levo being available, some patients must have been getting suspensions prescribed by the NHS. At this time some forum members on liquid were being told they must accept tablets, as no liquid was available. Those prescribed suspensions must not be on our forum , otherwise someone would have posted. Tollesbury Pharmacy, on a telephone enquiry , offered me a suspension when no liquids were available. I can't remember if an NHS route was on offer for this or not. I remember researching suspensions and coming to the conclusion they were frowned upon , as not delivering a consistent dose, and therefore would not likely be available on the NHS. They must be much cheaper than "specials", in that patients have been prescribed them last year. It is interesting that the recall notice says it is unlicensed, but it was being supplied on the NHS. Does this not prove that the NHS will prescribe and supply an unlicensed thyroid medication which is not an import? Birkie needs an unlicensed thyroid medication on the NHS which is not an import, and is derived from a lab in the UK, and the above seems to suggest it should be feasible that it can be supplied to her on the NHS, as there is similar precedent.

It would appear Birkie may have an M.P. who is championing patients affected by the blood scandal, so prepared to fight medical negligence. The female M.P. that Birkie thinks is her M.P. I think has been replaced by this male M.P.? birkie

birkie profile image
birkieβ€’ in reply toWua13262348

Right thank you for letting me know about the MP..πŸ‘ maby due to the election the other MP was ousted out...who knows πŸ€·β€β™€οΈ but I am sure I can go on copeland County Council and find out who he is.

Surprised my friend thinks it's a woman she gave me her name toπŸ˜‚ so she must be as clueless as meπŸ˜‚πŸ˜‚

Wua13262348 profile image
Wua13262348β€’ in reply tobirkie

I think due to a boundary change she did not stand in the recent election. I think you may have hit the jackpot with her replacement if it is who I think he is as he is fighting for those involved in the blood scandal. Time to get him interested in thyroid, Birkie! You were due a bit of luck, and you may be on a roll now!?

helvella profile image
helvellaAdministratorβ€’ in reply toWua13262348

The problem with Roseway that is difficult is whether they would accept an NHS prescription.

If they would, then the next step is persuading an NHS prescriber to prescribe it!

There are numerous unlicensed medicines provided by the NHS. Indeed, one medicine I use has been discontinued - and official guidance is for them to supply an unlicensed "special". But I simply can't push to get it and see an exorbitant amount of money disappearing from the NHS. So I buy a near-equivalent from Germany.

Wua13262348 profile image
Wua13262348β€’ in reply tohelvella

You're absolutely right in that Roseway won't accept an NHS prescription. I think Tollesbury pharmacy do, and Chemist 4U accept .

waveylines profile image
waveylinesβ€’ in reply toWua13262348

It's the ICBs who hold the purse strings for budgets for healthcare. If they say no, no one in their healthcare area can prescribe on the nhs, including hospitals. End of. The liquid levo is probably for emergencies. I believe they can source where they like.....that's what procurement does. Guess that means they can source wherever? Lol....

Wua13262348 profile image
Wua13262348β€’ in reply towaveylines

I think as per previous discussion on this post, that there is an argument for compounded NDT from UK labs being in a different category where NHS ability to prescribe is concerned. I take on board all you have said re.ICBs etc. The liquid T4 SUSPENSION, rather than oral solution, on voluntary recall by what is a UK based source of specials was extensive . M.P.s and Health Ministers in various departments of the Government , I imagine, should be able to over-ride ICBs and procurement if so inclined. I believe Regenallotment got a reply from Andrea Leadsom? comparatively recently re. her complaint about not being able to regularly source the same brand of thyroid meds. I think she raised the issue with her M.P. in the first instance, and possibly her M.P. escalated it to Andrea Leadsom. (likely she is no longer in post due to recent election), or Regenallotment wrote directly to her. I think the voluntary recall company must be "an approved Contractor" when circumstances require a "special". The fact that Birkie requires a compounded NDT available in the UK without the need to import the finished product as an unlicensed import, I believe , might be in her favour. If compounded NDT,( which I don't think you will have tried since imported Armour suits you, and you previously got it on an NHS prescription ) turned out to suit you, I think you would have a better chance of obtaining it on an NHS prescription.

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