Synthetic Thyroid Meds just not suiting me - Thyroid UK

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Synthetic Thyroid Meds just not suiting me

IndigoPixie12 profile image
28 Replies

Hello all,

I used to take Thiroyd NDT from Thailand. I went to their headquarters in Bangkok in late 2019 and was told that due to an outbreak of swine flu in the region, they had to stop manufacturing Thiroyd NDT. I grabbed 600 pills of Thiroyd from the 50th pharmacy in Bangkok so that lasted me a few months and I ran out. I then tried Thyroid-S but that did not suit me.

My T3 is always on the lower end of the range when on T4 only. I travel to Turkey a lot, so I was able to source T3 from there. I just don't feel that great on synthetic hormones and I am 2 years in on them (was off T3 altogether for pregnancy and that was really difficult to deal with).

Has anyone tried private prescription NDT in the UK? What are the ballpark costs for consultation, script and meds?

Thanks in advance!

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RedApple profile image
RedAppleAdministrator

IndigoPixie12, Your question may attract PMs from unscrupulous members telling you where you can buy NDT without prescription. Please read our post about this here, so that you are aware of how you can deal with this should it happen healthunlocked.com/thyroidu...

Sunflower64 profile image
Sunflower64

I cannot answer your question, but find it interesting that the manufacturer said they stopped production due to swine fever. I have read that both Thiroyd and TR were stopped because Thai authorities required NDT to be licensed (which is apparently costly). If it was due to swine fever, production could hopefully resume some day…

Paquita profile image
Paquita in reply to Sunflower64

I read that in 2018, FDA disallowed active ingredients from China, where all Thai manufacturers got their raw materials. And Thai manufacturers are bound to use only FDA approved active ingredients. Only Sriprasit got a new license, and that would mean they source their raw materials from elsewhere since then. The idea of disallowing Chinese sources was to keep production of active ingredients in the US. Would Sriprasit now import raw materials from the US? That would definitely make it more expensive for them, plus the licensing itself being costly.

Sunflower64 profile image
Sunflower64 in reply to Paquita

Interesting! I would imagine raw material from China is cheaper than US raw material, which could explain why the price went up…add to that a general shortage of raw material due to swine fever. So Chinese raw material was not disallowed due to health concerns but for economic reasons…?

I have been wondering where the Vietnamese source the raw material for their NDT.

Paquita profile image
Paquita in reply to Sunflower64

It would also explain why other Thai brands have not resumed production. Sriprasit may have added more cellulose and cut dextrose content to compensate for higher production costs. But why Armour would have done that in 2009 when no such thing was happening?

Sunflower64 profile image
Sunflower64 in reply to Paquita

So higher cellulose content could explain why some feel Thyroid-S is now less potent…but many also find potency varies from batch to batch, which is strange since the cellulose content should be the same…

Paquita profile image
Paquita in reply to Sunflower64

The batch to batch difference is because thyroid glands aren't all the same. Or so is the theory. A Dutch brand, Thyreoidum, is stable and has the same contents in every batch. I don't know about other brands.

helvella profile image
helvellaAdministratorThyroid UK in reply to Paquita

Of course individual thyroid glands are different! This has been known since at least 1892!

That is why they take some glands, defat, desiccate, powder. Then they assay the powder and blend batches plus a diluent (there are around eight approved substances like sucrose and lactose) to ensure the blended batch as, as near as they calm, the same potency as every other batch.

I am pretty sure that Thyreoïdum is based on the Thyroid USP product from Biofac.

The issue about individual glands being different is a classic "doctor" reason for desiccated thyroid being unstable.

Why even in the early 1890s they went for porcine thyroids, rather than bovine or ovine, simply because they knew glands varied. In cattle and sheep, they vary significantly by season - climate and reproductive! Pigs were much more even to start with.

Also, in the 1890s they didn't have the same options for freezing and/or freeze-drying which we now have.

Paquita profile image
Paquita in reply to helvella

I know that, but not why one brand is (much) more stable than the other.

helvella profile image
helvellaAdministratorThyroid UK in reply to Paquita

I suggest:

Either the production process is poor and allows variable potency.

Or, despite being good on potency, the hormone is being delivered inconsistently.

Bear in mind, the issue with a make of levothyroxine in about 2012 was not about the amount of levothyroxine in the tablets. But whether it was released completely when taken. Anything further is bound to be pure speculation.

helvella profile image
helvellaAdministratorThyroid UK in reply to Paquita

Would changing from dextrose to cellulose make any real difference to their costs? As I understand, both are common excipients and I've never seen any suggestion either is expensive.

I don't think we have any evidence for Erfa changing sources - or not changing sources - when production moved to Spain. At the time, when Erfa said anything, it seemed to be production control - pressing pressures and such like - that was blamed.

There are two European desiccated thyroid producers I know of - Biofac and Bioiberica.

I'm not aware of anyone transporting thyroid glands as such across the Atlantic. Both these producers could be sending their Thyroid USP products but, as so often, finding anything out for sure is difficult.

Sunflower64 profile image
Sunflower64 in reply to helvella

This is the first time I have seen NDT referred to as Levothyroxine and Liothyronine. Aren’t those terms reserved for synthetic thyroid hormone?

helvella profile image
helvellaAdministratorThyroid UK in reply to Sunflower64

It has become common to describe them like this.

I think it has occurred due to several changes - each one of which made quite a bit of sense but has resulted in this apparent oddity.

When T4 was called thyroxine, there was no distinction between the T4 content of desiccated and synthetic products. Both called uncontroversially thyroxine.

When the pharmaceutical people realised that they really did need to distinguish between the chiral forms L-thyroxine and D-thyroxine, they decided to add the levo- prefix which was very much in line with many other medicines.

When they looked back at desiccated thyroxine, failing to distinguish between L-thyroxine and D-thyroxine was as poor practice as it had been for the synthetic products. And the thyroxine in desiccated thyroid is L-thyroxine. Hence that too started to be called levothyroxine.

In itself, I find it difficult to criticise this. It is accurate. The only issue seems to be that some people make an assumption that all levothyroxine is synthetic. But I see no reason for that assumption. It is just something we fall into.

The full name of T3 is L-3,5,3'-Triiodothyronine (and there are many variations on this but this works well enough). One of the names used for it was also liothyronine. Convention and nothing else meant that we most often use the name liothyronine for the medicine, and L-3,5,3'-Triiodothyronine, or L-Triiodothyronine, or Triiodothyronine or L-T3 for the form found in our blood. Triiodothyronine, like thyroxine, does not distinguish between the L- and D- forms. And, just as with thyroxine, adding an L- clarifies.

But L-Triiodothyronine (or levotriiodothyronine) is a longer name, easier to mis-type, etc. So using the name liothyronine is just a simplification. Again: The only issue seems to be that some people make an assumption that all liothyronine is synthetic. But I see no reason for that assumption. It is just something we fall into.

Therefore we end up with desiccated thyroid being described as Levothyroxine and Liothyronine in terms of its active hormone content. And this jars with many of us.

Note: The UK's dm+d database used to classify desiccated thyroid as a levothyroxine medicine. I complained this was inaccurate and explained, and they changed to Levothyroxine and Liothyronine. I am not guilty for this being the case elsewhere, but I might have had a hand in this within the UK!

Would using L-T4 and L-T3 (rather than full words) make it better? I suspect it would but find it difficult to rationally justify that feeling!

Paquita profile image
Paquita in reply to helvella

I meant the powder, edited my post. Why would they adjust the contents if it has such negative effects, if not for cost? Tagging Framboise , because we talked about this before.

I did not know that about Erfa, the STTM blog dates from 2014, when Erfa still said nothing had changed.

helvella profile image
helvellaAdministratorThyroid UK in reply to Paquita

The FDA disallowed a specific Chinese supplier/product as linked below.

Westminster Pharmaceuticals, LLC. Issues Voluntary Nationwide Recall of Levothyroxine and Liothyronine (Thyroid Tablets, USP) Due to Risk of Adulteration

fda.gov/safety/recalls-mark...

I am not clear what has happened with respect to Medisca.

Paquita profile image
Paquita in reply to helvella

Do you mean the whole story of Chinese raw thyroid not being allowed anymore is incorrect? What is Medisca?

Sunflower64 profile image
Sunflower64 in reply to Paquita

Do you know more specifically what the problem with Chinese raw material was? It seems swine fever is not transmitted to humans, so I would be more worried about the use of growth hormone and antibiotics.

Paquita profile image
Paquita in reply to Sunflower64

The comment online said under Trump's administration, they wanted to keep production in the US. There wasn't a problem with the Chinese material. It was just that it wasn't FDA approved anymore, and Thai manufacturers are dependent on FDA.

helvella profile image
helvellaAdministratorThyroid UK in reply to Paquita

All companies involved that I know of are in my desiccated thyroid document.

helvella's medicines documents (UK and Rest of the World) can be found here:

helvella - Thyroid Hormone Medicines

helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.

I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.

helvella - Thyroid Hormone Medicines - UK

The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc.

dropbox.com/s/bo2jzxucgp9hl...

helvella - World Desiccated Thyroid

Contains details of all known desiccated thyroid products.

dropbox.com/scl/fi/gx6dmz5i...

helvella - Thyroid Hormone Medicines - RotW

Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.

The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.

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

DippyDame profile image
DippyDame

It sounds as if your T4 to T3 conversion is poor and you need to add some T3.Perhaps it's not that synthetic hormones don't suit you but that you weren't on the correct replacement hormones/ dose.

You haven't posted any lab results that give us an idea of what is going on....but the biggest clue in your post is "My T3 is always on the lower end of the range"

For good health every cell in the body needs to be flooded with T3 by way of an adequate and constant supply. This doesn't appear to be happening in your case.

Are you prescribed T4 on the NHS...if so an appointment with an endo to discuss poor T4 to T3 conversion may lead to a T3 prescription.

Also vital that you optimise vit D, vit B12, folate and ferritin to support thyroid function...these are very possibly low

Have they been tested recently?

Others may advise on private prescriptions but first, in your shoes, I'd want to explore T4/T3 combo treatment.

NDT provides 9mcg T3 and 38mcg T4 per grain. How many grains were you taking?

It may not be synthetic hormone that's wrong for you.... but the dose that is wrong.

Maybe not the info you hoped for but hopefully something might resonate.

HealthStarDust profile image
HealthStarDust

Try Roseway Labs for NDT.

Sunfish22 profile image
Sunfish22

Just read a comment up there that it might be considered not well to post where you can get prescription free NDT. It is my first reply here so if I have made a mistake let me know. I do check my hormone levels regularly with an endocrinologist. They are most of the times ok. T3 a bit higher than with T4 alone in the upper third of normal range, sometimes TSH suppressed. I do not support synthetic T4 at all. Get panic attacks and else. Was a torture for 9 years. Tried all kinds of doses and different T4 meds. NDT is not perfect either, but works better for me.

RedApple profile image
RedAppleAdministrator in reply to Sunfish22

Sunfish22 'if I have made a mistake let me know'

Yes, I have deleted that comment as it's not permitted to post sources of prescription free medication on the public forum. You can share this information via the personal messaging (chat) system.

Sunfish22 profile image
Sunfish22 in reply to RedApple

Hello, thank you for the information that I am not allowed to share a web address for prescription free hormones. I am buying them for me in Europe for years. To my experience the company is trustworthy and the product high quality. [edited by admin]

I have never written pm in my life before. Will give it a try if someone wishes to know my source. But might take some time as I am not often here. Bye for now.

Sunfish22 profile image
Sunfish22

Also tried a synthetic combination of T4/T3 . Better but still panic attacks which I never had with NDT whether I was hypo or sometimes hyper… I have found a possible explanation for this. In NDT the hormones seem to be bound to proteins. In synthetic products hormones are delivered directly. Maybe for my system this is too much.

arTistapple profile image
arTistapple in reply to Sunfish22

Interesting observation about the protein binding. I ‘over react’ to both T4 and T3. I have avoided thinking about NDT because of sourcing issues. I will give this a bit of thought. Thank you for that info.

metamorphica profile image
metamorphica

I used to get on well with Thiroid but not Thyroid S as well.

and yeah im now on synthetic T4/T3 combo from my endo, but do not do as well on it. Wish i could afford private or hell, even self sourced NDT again (but options now available are limited. )

I wish you luck if you go the private prescription route.

I know one example of private costs given (and this was their personal experience)

Armour NDT -£150 a month, Levo £8 a month

appointments 2-3 times a year at £70 a time

Prescription cost each time -£40, each prescription is about 3-6 months worth, so 2-3 prescriptions a year.

Then adding in private medical blood tests depending on company.

PHappy profile image
PHappy

You could try Metavive III bovine from the natural choice. They legally produce and sell desiccated thyroid capsules in the EU UK thanks to a loophole; not mentioning the possible ammount of active hormone in the capsules. So one has to go by the feel. Their products are high quality. I used to rely on them but I, contrary to you, feel better on synthetic hormons T3 only. My source has dried up so I ask you; how recently did you buy from Turkey? Is it still possible? I have 1 month's supply of T3 left.

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