Hi everyone ❤️

[birkie]

Just a little update on how im doing on the NTD from roseway labs,9wks now👍 firstly all gastric issues have gone and never returned 😁 second I feel more alert , I have no brain fog no headaches actually nothing bad to report 🙌.

I'm not yet doing cartwheels down the street 🤣 and at 62 years of age even if I didn't have this thyroid condition I think my cartwheeling day are over😂 but I am feeling some energy coming back, ive started back on my gym ball, doing some sit ups and leg exercises 👍 so that's a good start.

I do still have some days where I do feel tired but the lovely lady at the rosway clinic did say because I was so hypo it could take several months before I start to feel myself , or feel like I have more energy day to day...I'm currently on one and a quarter grains and I had my bloods done on Thursday, just waiting on those results.

But I want to ask some members who are taking ndt about the nhs prescribing it....or not prescribing it....I found a specialist in Macclesfield Manchester who wrote a paper on the benefits of ndt for patients who struggle with the synthetic form, he concluded the patients did better on the ndt than the synthetic form, which bore out in there blood tests and lessing gastric issues.

My gp wrote to Macclesfield hospital where this specialist worked , she recently wrote to me stating this specialist no longer works within this hospital and all her enquiries into ntd on the nhs were futile as she was told NO specialist endocrinologists would either pescribe it or recommend it , she then went on to ask me how I was doing under her regime she had Laide out, which was to take a peppermint oil capsule and the lactate enzyme one hour before taking the levothyroxine.

As it says in the peppermint oil leaflet these capsules are not recommended to anyone with gallstones [ which I have] I did not do her recommend routine and stayed on the ndt, feeling way better as the weeks are progressing 👍

I'm honestly appalled at the hoops I'm now going to have to jump through...AGAIN just to try to get a medication that works for me, without having to pay private for it..[ I'm on disability money, and it's not enough to folk out over a hundred pounds a month for my medication 😡

It seems the gp and the whole of the nhs mafia as closed me down😡, what angers me the most is my gp is complacent with it also, I will be very interested to see what the 9wks on ndt as done to my Ts and TSH??? Hopefully it's a good result, if it shows I'm now euthyroid I can at least take this as evidence this thyroid medication is working for me, and by the nhs refusing to supply me with the correct thyroid medication is surely against my human rights🤷‍♀️..and anyone else's human rights who can't obtain it through the nhs😡

[nightingale-56]

I am also doing much better on Roseway NDT birkie , and so pleased for you that it seems to be having a good effect on you too. I am weathering the storm of paying for it myself via a private prescription, as I could not go down the route of begging for it from NHS. My NHS Endo is happy to still monitor me once a year and concedes that my bloods are very stable on NDT. I wish you continuing good luck with it.

[Auders in reply to nightingale-56]

Hello, I get T3 and top up T4 from Roseway, would you mind if I ask how much NDT costs? Is it a real scary amount?😱

[birkie in reply to Auders]

Hi Auders❤️

My first initial consultation was £178 [ paid by my lovely son❤️] broken down it consists of £55 for consultation £35 for the E-pescription and £80 for the actual ndt £8 for postage delivery .

My next cost should be £80 for the ndt and £8 for postage I'm unclear on the E - prescription 🤔 but I reckon I'll need to pay £35 on top.. so that's £123.00 but they did give me 100 capsules which lasts longer than a month, im on one and a quarter grains atm , just had my thyroid bloods done so waiting on those results ...be very interesting to see what they are 👍 as all synthetic t4 ,t3 as never put my levels in range.

[Auders in reply to birkie]

Thank you very much for that, it’s not half as scary as I was imagining! I’m waiting for my order of T3 and T4 from last week, I didn’t need to pay for postage. I do the lady at Roseway, very friendly and knowledgeable. I may ask about it next time I need to contact them. I was reassured by the cost (bad as it is!) but I was expecting it to be a lot more, once again many thanks and good luck 🤞

[birkie in reply to Auders]

Sorry Auders🤦‍♀️ didn't realise you were replying to nightingale 🫣

[Auders in reply to birkie]

Many thanks 🙏 😃

[Auders in reply to Auders]

Sorry Birkie I thought I was replying to you anyway! Dohhh brain fog

[nightingale-56 in reply to Auders]

The amount I pay varies as I only pay for my prescription costs at Roseway. I see a private Endocrinologist via a telemedical once a year and he sends me my prescription which I then use to order NDT from Roseway., but very roughly the cost is about £1 per capsule for 1 grain of NDT.

[Auders in reply to nightingale-56]

Thank you so much, very interesting to know roughly how much other options would cost, again many thanks 🙏

[Come-back-thyroid]

Hi Birkie,

I’m so pleased that you are doing well on NDT and I hope it continues. Like you I share your frustration that there is only one treatment option available for hypothyroidism on the NHS.

I also had a thyroidectomy eight years ago and have not been symptom free on T4 but not with your gastric issues which must be awful. There really ought to be alternatives available for people who have problems with Levothyroxine. If it’s due to a lack of research then isn’t the fact that patients are trying NDT or T3 and feeling better an incentive to run proper double blind clinical trials with control groups (and with thyroidectomy patients and autoimmune hypothyroidism split into different groups as the two conditions are not the same and may respond differently). Think of all the savings in fewer appointments if patients actually had suitable medication rather than one size fits all. Surely that would be worth the cost of funding the trails.

I would love to trail a T4/T3 combination but T3 is blacklisted where I live 😡 Everything I have read suggests that thyroidectomy patients do better with T3 yet the NHS would rather treat us with T4 only. It’s so frustrating. I realise T3 may not suit me. I just want the option to try.

I do share your anger and frustration at not being able to obtain the medication that works for you but I’m not surprised you are having to jump through hoops. Though I do sympathise. If it were me I would be reluctant to try something that might make me ill again after just finding something that works. There’s only so much illness one can cope with.

Good luck going forward.

[birkie in reply to Come-back-thyroid]

I'm with you❤️...and you would think my gp would support me, obviously I can't ask her until I get my bloods back, but by god if they are all in good levels I will question her on the ethics of allowing a patient to be on a drug that doesn't work as opposed to a drug that does?? Just because the dam nhs don't pescribe it😡I will then ask about my rights as a patient...my right to correct medication for my condition, im also composing several letters with the help of my son to my MP and PALs ect , as far as I'm concerned it's my right as a human being to be treated with dignity....and to get the flippin correct medication 👍

[Come-back-thyroid in reply to birkie]

Thanks Birkie.

Good luck with everything and hope things work out for you.

[birkie in reply to Come-back-thyroid]

Also the reason they won't do any trials is from what I've been told by many gps and endocrinologists is.....NDT is very hard to monitor or control [ what a load of dog 💩] it's no more harder to monitor or control than T3 or T4 ..this is what we hypos call gaslighting.Also one endo bless her empty brain told me NTD was stopped by the nhs due to CJD😂 I corrected her...saying NDT is derived from PIG thyroid not cow [ bovine] pigs never contracted CJD...more gaslighting...I could tell by the look on her face she wasn't dealing with some brainless patient here💪 she backtrack on that little ditty..but in the end gave no real response as to why the nhs stopped prescribing NDT...just I couldn't get it from her...well duh🤷‍♀️

[helvella in reply to birkie]

I'm not sure if you have seen my notes about the end of thyroid in the UK?

I have posted it a few times, might even have replied to you with this! But, if not, it is worth a read.

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 in reply to helvella]

No I don't believe I've read it helvella🤔 I will look it over thanks, I've been told some whoppers by specialists and gps as to why NDT can't be prescribed today...but the CJD as to be the best😂

[birkie in reply to helvella]

Just read the blog helvella👍 Firstly I would like to ask these people.. ,, how many patients on ndt died of heart disease or any other conditions before the synthetic version became available ?

Are we to believe the nhs kept hypo patients on a unreliable dangerous medication for hypothyroidism for years? 🤔

We have thousands of people including myself taking ndt are we in danger?

If so..how can we obtain this very dangerous product privately through reputable clinics and private specialists?

Now I know some people do obtain very dangerous drugs😉 but they don't get a private prescription for them, it's usually done under the radar..

So I can only conclude these people who stopped ndt did it for other reasons, maby because T4 was cheaper, so no need for ndt , let's think about cost and not the patients..makes sense.....NOT!!!😡

[helvella in reply to birkie]

Well, at the time, the methods used to assay desiccated thyroid were pretty poor. It is quite possible that batches did vary more than they should.

It is also possible that prescribers failed to understand the difference in potency and assay between Thyroid, BP (UK product) and Thyroid USP (ingredient used in USA product). Early in the twentieth century, both UK and USA products were prescribed in the UK with the consequence of much confusion.

But the assay issues were sorted many years ago. And we pretty much only see products that are based on Thyroid USP (or something that claims to be to that specification).

[Come-back-thyroid in reply to helvella]

Very interesting. Thanks for highlighting this. I’m reading ‘Rethinking hypothyroidism’ by Antonio Bianco which has a section on this history of hyperthyroidism treatment and is also worth a read.

[helvella in reply to Come-back-thyroid]

I've just added a few words (more or less as in my reply above) to the blog entry.

[nightingale-56 in reply to birkie]

It was Human Growth Hormone that was stopped because of Creudtzfeld Jakob Disease in 1983. My Son was stopped from the injections for a year because they were on the cusp of bringing out a synthetic Growth injection. During that year he stopped growing well, but once started again on the synthetic injection he resumed going up the same centile of growth.

[birkie in reply to nightingale-56]

Yes but the endo told me ndt was stopped because of cjd 🤷‍♀️ she was obviously wrong on that!

[nightingale-56 in reply to birkie]

Just thought you might like to tell her she got the wrong hormone @birkie? And, of course, the wrong Gland. xx

[birkie in reply to nightingale-56]

Actually I asked her why ntd was not licensed by the nhs...her reply was " well because of cjd " obviously I knew what cjd was so I asked why because of cjd? She went on to say " the thyroid could not be used because of the link to cjd"

That's when I fact checked her on the thyroid being used is pig not cow [ bovine]

But she definitely thought I'd fall for her answer, and i really don't know if she was just ill informed or he brain had fryed that day ..😂 that's when she back tracked on it, but she definitely said thyroid 🙄

[helvella in reply to birkie]

The vital component of the Schilling Test (for Pernicious Anaemia) also disappeared because of concerns over BSE. That was a bovine extract but was also made slightly radio-active so that it could be detected.

Since then, no Schilling Test. And not just the UK.

(The test was also complex, easy to do badly, and expensive. But lack of a viable replacement is a bit of a disaster in the PA world.)

[birkie in reply to helvella]

It just beggers belief she though I was going to fall for the cjd cow thyroid theory, in the explanation as to why the nhs don't pescribe ndt😂

[birkie]

With all the tech we have today I would feel ndt could be taken without incident, of course you may get the odd patients not taking it correctly , or forgetting to take it or have absorption issues, but that would also apply to taking T4, T3 🤷‍♀️It just seems they don't want patients taking it at all, which is so wrong😡

[helvella in reply to birkie]

We seem to be approaching a mixed blessing point re desiccated thyroid in the USA.

We know that the FDA is classifying Armour Thyroid as a biologic and applying all the standards that have been developed for sophisticated biologics. At the end of this process, the FDA might - at long last - formally approve Armour Thyroid as a medicine for treating thyroid issues.

The problems with this seem to be:

Will this affect the cost of Armour Thyroid?

I'd be surprised if the prices didn't rise.

Will this affect the availability of Armour Thyroid in other markets/countries?

As a formal medicine, some countries might think they have to introduce new measures.

Will this approach also apply to other desiccated thyroid products?

There are currently several US desiccated thyroid products. It is possible that going through the biologics approvals will be seen as just too costly for the possible financial returns.

Will any US competitors remain in business?

If other manufacturers see diminishing returns, they might quit the market.

Is the above too negative? I don't know. It is possible that full approval will release a wave of "me too" approvals across other countries. But experience suggests that it is patients who pay for most of these changes over the years.

[birkie in reply to helvella]

Seems big pharmacy will win here again with costing🤦‍♀️ and us patients will actually pay the price with our health😡

Sort of off topic...but I read the story of a certain pop star won't mention the name but this person suddenly found going on stage to perform was debilitating this had be occurring over months, and when they got to see a specialist they were diagnosed with chronic fatigue syndrome, ME and fibro..of course being a fellow sufferer I know there's no cure just pain meds and other drugs.

This was mentioned to the star but the regime didn't help...but because this person was wealthy they took it upon themselves to research the condition and they were able to get certain injections of minerals and vitamins and pain injections which helped immensely giving the person there life back.

This person could do this, and keep up with the regime eventho it was costly there health is way better now.

But some don't have this luxury and we have to rely on our health service to get us the correct treatment , which is sadly lacking.

I have no problem at all with people going private I have myself, and feel much better on ndt than I ever did on the synthetic stuff , but it just shows you how the drug industry hold our feet to the fire in making medication so expensive 😡

[Bertwills]

Very glad to hear you found a medication you can tolerate. What a relief that must be. Sorry that you have a battle on your hands to find a way for the NHS to prescribe it, they’re so short sighted. Good luck 👍

[TaraJR]

SO glad you're improving at last.

This is the link to OpenPrescribing for regions. You can also look in your area/GP practice. Trust. I assume searching for Levothyroxine and Liothyronine in a single item means NDT? I which case, NDT is being prescribed

openprescribing.net/analyse...

[birkie in reply to TaraJR]

I can only assume this particular thyroid medication ndt which as T4 and T3 in it's compound as no nasty fillers, hence me being able to stomach it🙌 .

I have tackled my gp surgery and many endocrinologists in my area ( North West) and further [Newcastle and Macclesfield Manchester ] where a specialist wrote a paper on the benefits of ndt for patients who don't do well on synthetic hormone.

Unfortunately my gp informed me this gentleman is no longer working at the Macclesfield hospital, she also informed me " no endocrinologists or specialist would entertain prescribing ndt as its not licensed.

She urged me to do a regime of taking peppermint oil capsules and lactate enzymes one hour before taking the T4...the peppermint oil leaflet says DO NOT TAKE THIS MEDICATION IF YOU HAVE GALSTONES, I have galstones so I have not gone with her recommendation , and im doing great on the ndt👍.

[Wua13262348]

Delighted the NDT is having the desired effect for you, Birkie. Thanks for the update, wondered how you were progressing.