Rumours about NDT required to be licensed? - Thyroid UK

Thyroid UK

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Rumours about NDT required to be licensed?

24 Replies

What would this entail? That they would no longer be available as supplements, but would require a prescription?

I personally find the situation very worrying, with TR already discontinued, and Thiroyd possibly as well, which leaves only Thyroid-S.

I have not been able to find any info about why TR was discontinued...I just assumed it was due to insufficient demand. Now, the same thing is said about Thiroyd. Yet, hundreds of thousands of people all around the world are on Thai NDT and very happy with it...so what's REALLY going on I wonder???

I've even seen rumours that the Thai authorities are giving in to pressure from the FDA, the end goal being to force all NDT brands off the market, but isn't that theory a little far-fetched...(more a conspiracy theory à la STTM)?

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helvella profile image
helvellaAdministrator

That they would no longer be available as supplements, but would require a prescription?

As far as I was aware, Thai desiccated thyroid is a prescription-only medication within Thailand. So possibly no change there.

We have to be careful with STTM and other sources which are USA-based. It could be that the FDA is cracking the whip in some way, but that does not necessarily affect the rest of the world - though, obviously, if companies quit the maket, that does affect everyone.

in reply tohelvella

Ok, so then it’s just sellers shipping intentionally labelling them as supplements...good to know.

There is an increasingly authoritarian aspect towards modern medicine. If a product is not produced by part of the big pharma conglomerate then they are gradually being removed from sale. This is also happening in the alternative healthcare movement. If anything is sold making any sort of health claims producers are being forced to take part in multi million pound testing regimes or remove any information that's suggests it could be beneficial for by health.

Some might suggest that this is pure racketeering by the pharma conglomerates to remove any possible competition.

People will have to form their own conclusions. But as you say how many people have benefited from other treatments and are they all wrong.

in reply toovernighthearingloss

I agree, but NDT is not modern...it’s been around since the late 1800s, and was the only treatment option for half a century before synthetic meds were invented...for that reason alone, many doctors seem to think NDT is manufactured according to old fashioned standards and not standardised, which of course is wrong.

overnighthearingloss profile image
overnighthearingloss in reply to

Makes no difference these days it seems. Look up the story of Zara's tea. The lady behind it is Dounne Alexander MBE.

YES she's an MBE for goodness sake and they have decided to ban her product that used to be used within NHS circles.

I have only recently learnt of this and have no personal knowledge of the product itself, but it's a repeating story. Things that have a proven track record are being banned.

People need to wake up to just what is happening.

helvella profile image
helvellaAdministrator in reply toovernighthearingloss

We also need to remember that big pharma and big supplement have huge overlaps. How much do they really compete?

And I do not want big supplement to make overblown, possibly unsubstantiated, claims for their products. We see many extremely dubious supplements on the market - whether they are simply formulated to have headline appeal or for rock bottom cost of manufacture or claim to contain unicorn thyroid with magical properties.

shaws profile image
shawsAdministrator

It could well be due to the False Statements made by the following organisation (in link below) - who shoud really be better educated. Considering NDT saved lives since 1892 as before that we died.

One our TUK's Advisers wrote to them every year for three years (before he died through an accident) and they never did respond. Makes one wonder how the 'experts' cause disaster to patients who now find NDT difficult to source when it used to be prescribed. Some private endocrinologists may still prescribe. NDT withdrawn from the NHS as well as T3 restricting us to synthetic levothyroxine alone and many (including myself) cannot recover or feel an improvement on levo.

Dr John Lowe wrote to the Association every year for three years before his accidental death but they did not have the courtesy to respond:-

drlowe.com/thyroidscience/C...

in reply toshaws

Very interesting indeed!

What worries me, as a thyroid patient more generally and a long-term Thyroid-S user in particular, is that brands of NDT are suddenly discontinued with no advance warning to patients, or somehow reformulated to work less well...when Armour was reformulated and patients started complaining about symptoms returning, I thought whatever the reason behind the reformulation, it was not to make the product work less well...now, after several reformulations (both NP by Acella, Naturethroid, and Erfa are said to have been reformulated and work less well as a result, Thai TR has been discontinued and Thiroyd may also be), I am beginning to wonder if there is a pattern behind all this. I don't want to sound paranoid, but I cannot help but think that too much is happening and it's all for the worse. It was great when TR appeared on the market as that offered patients more choices, but then it was suddenly discontinued. Thiroyd has been around for a long time and many are on it; yet, the manufacturer claims there isn't enough demand so they might discontinue it. That just doesn't make sense to me.

I don't know if the following rumours are true: that Thyrolar and Euthyral (synthetic T3/T4 combo drugs) have been discontinued in the US and France respectively?

shaws profile image
shawsAdministrator in reply to

Could it be that the thyroid hormone replacements you state above weren't prescribed often enough for pharma company to make a profit so they withdrew it. Considering it is mainly females who suffer with hypo the Pharma Companies should ensure there's enough alternatives for those who don't do well on levo.

in reply toshaws

It's possible. I have not found many TR users online, and when they started manufacturing it, Thyroid-S and Thiroyd had already been around for a few years so I guess it was difficult to attract new customers. The same could be true for newer NDT brands in the US as well...however, since Armour's reformulation many former users have given up on it and started looking for alternatives, so there should be a splendid opportunity for another manufacturer to provide a drug that worked just like old Armour is said to have worked (without cellulose). That is how it should normally work in a market economy. The fact that it hasn't in this particular case, but that other manufacturers who could have taken over Armour's market share instead followed suit and reformulated their products for the worse as well, makes me suspect there is more to it than meets the eye...

shaws profile image
shawsAdministrator in reply to

You may well be correct. We should be able to source alternatives and shouldn't need prescriptions.

jjf255 profile image
jjf255

I am going to certainly sound like a conspiracy theorist with my next statements, but here goes...I believe that Big Pharma not only wants NDT eliminated from all sources world wide, because they only want to sell their multi billion $ synthetic T4 , but something much more sinister. Big Pharma knows that if patients thyroid levels aren't optimal, the patient will soon have high BP...their cholesteral will rise... their kidney function will be low...they often become diabetic or certainly pre diabetic...on and on. As we all know, the thyroid regulates every bodily function in some way or another. Get where I'm going with this? If there is no longer NDT, then all of these other drugs to help all the failing bodily systems will have to be prescribed. Yes...T3 can be prescribed, but how many Dr. will prescribe...not many. T3 will be the next med that Big Pharma will try to eliminate. I know this all sounds crazy...but all of these failed body functions happened to my husband after he was switched from NDT to Levo years ago. Finally several years ago, we found a Dr. that would again prescribe NDT. My husband was able to eliminate a # of the other meds he was on, because his BP was better...almost perfect cholesteral, better kidney function...etc. Now with all the changes to the NDT meds, his # aren't as good again. His Dr. is talking about trying T4 with T3. We aren't sure what to do at this point. Big Pharma is winning.

in reply tojjf255

I understand you, especially given your husband's experiences. It's very worrying that so many brands of NDT have been reformulated and now work less well as a result. As far as I know, the only NDT in the US that is still deemed good is WP, and there have been recent shortages. When a given brand is not available, and there are no satisfactory alternatives, it creates panic among patients.

Now, there is a rumour that Thyroid-S has also been reformulated somehow. I don't know how true it is since I have not ordered any recent batches, but one thing is certain: not a single reformulation so far has led to NDT brands working better for patients. Quite on the contrary. When Armour was reformulated, patients saw a host of symptoms return. Many switched to Naturethroid which was also changed somehow not long after. Then the same thing happened to Erfa. Although the company denied any reformulation, there were pictures on the STTM website showing the "old" and "new" Erfa pills, and there was a clear difference in colour and texture (the new one looking more blotchy). So it's obvious something happened to it, although the company won't admit it. Many patients no longer feel well on it and that is all I need to know to believe something was done to it.

Your theory is cynical but not unrealistic. It cannot be a coincidence that so many brands of NDT that used to work great have been either reformulated or reported to suddenly work less well for a reason.

shaws profile image
shawsAdministrator in reply tojjf255

You're correct. If the millions who are hypo worldwide cannot recover on levo alone, plus others who are then given additional prescriptions for the remaining symptoms they still have, or develop more, pharma profits will increase. Most doctors seem to think that once the TSH is somewhere in the range that we're on a sufficient dose and will prescribe other medications for the symptom i.e. antidepressents, pain relief etc etc.

Margo profile image
Margo in reply tojjf255

You said exactly what I was thinking jjf255 . Think it is pretty obvious what Big Pharma plans are.

jjf255 profile image
jjf255

Thank you for your reply. I called some of our local pharmacies a few months back to see if any carried WP and at that time, none did. I'll have to check again. I take Thyroid S, but with my husbands other health issues, I only wanted him on an NDT that his Dr. would monitor. Now I'm worried that my Thyroid S will be changed or eliminated. I have a big back up supply, but I'm worried!

shaws profile image
shawsAdministrator in reply tojjf255

When we've found a hormone replacement that suits us we definitely don't want any changes in it. One of TUKs previous advisers said that it was due to 'monetary exchanges' that levo and blood tests were introduced giving more profits to pharma companies, i.e. due to 'additional' symptoms that aren't relieved thus more prescriptions

in reply tojjf255

All I know about Thyroid-S is that there was a rumour back in June that it would be discontinued. One seller even emailed customers urging them to stock it. I emailed the manufacturer, Sriprasit, and was told Thyroid-S was NOT being discontinued.

I don't know where the rumour about it being reformulated comes from, but I guess we will find out soon enough if it's true or not...hopefully, Thyroid-S users (and there are quite a few of them here) with recent batches will hopefully keep us updated.

jjf255 profile image
jjf255 in reply to

Thank you for the update. I am one happy Thyroid S user who hopes nothing changes. My only fear, being in the U S, is that a shipment will be confiscated.

marielp612 profile image
marielp612 in reply tojjf255

I ordered Thyroid-S two weeks ago after learning about the problems with Thiroid.

The price was almost double but the good news is that it arrived within 10 days, registered mail. I'm now good for about 17 months...

jjf255 profile image
jjf255 in reply tomarielp612

Hi Marielp612

By any chance are you in the U S?

marielp612 profile image
marielp612 in reply tojjf255

Oh, yes...sorry about that. I am in the US. I was able to track the shipment...even see when it arrived at JFK and saw it on its way to me the next day. The site in Thailand actually has an FDA disclaimer stating that Thyroid-S is a supplement that doesnot require a prescription, so maybe that has made the difference.

Lora7again profile image
Lora7again

I have purchased Thyroid S from Thailand and had no problems with it coming through customs - infact the postman delivered it. It took about 7 days and cost me £59. (this was last year btw)

in reply toLora7again

Some sites now charge 118£ for 1000 pills.

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