Rather Concerned: Thyroid S: I have been taking... - Thyroid UK

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Rather Concerned: Thyroid S

26 Replies

I have been taking Thyroid S for a little while now. I saw a new GP in our practice recently and confessed to him that I have started trialling NDT and have come off the prescribed Levothyroxine thinking I would come across substantial opposition like all the other GPs in the practice regarding NDT and T3 meds. To my utter surprise, he stated that although he can't prescribe or recommend it, he would support me and monitor me using it. This is great news, however, he has requested an official pharmaceutical company data sheet for my medical records, which he says is crucial in case of incidents needing intensive care so hospital staff need to know exactly what I'm taking, plus he is interested in learning more about it. When I stated it didn't come with one, he said that this is pharmaceutically illegal and therefore it cannot be proven to be a legitimate batch of meds, which I understand what he says. I therefore, contacted the pharma company who manufactures it in Thailand via email with acknowledgement that it was sent requesting an official data document, but have had no reply at all. This concerns me somewhat, how do we know this stuff is really legitimate and pure? I know there is ingredient information on the STTM site, but this isn't legitimate data from the manufacturers, and why don't they produce information sheets with each batch like all other meds you get??? Big question here... No wonder it is so Boo Booed in the medical profession 😕

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26 Replies
Clutter profile image
Clutter

MapleMoose,

You'd have to ask the manufacturers why they won't say what the ingredients of Thyroid-S are. I doubt you will get the information your GP has requested. It's obviously not illegal to manufacture and sell Thyroid-S without the pharmaceutical data sheet in Thailand.

If your GP won't monitor you on Thyroid-S perhaps you could switch to Armour, NatureThroid, Acella NP or Erfa which are regulated and listed in the US and Canadian national formularies.

in reply toClutter

Thanks, yes I might have to consider switching.

Hillwoman profile image
Hillwoman

If you switch to one of the brands Clutter suggested, they all come with an extremely comprehensive data sheet that is the relevant excerpt from the US Pharmacopeia. Should keep even the geekiest GP happy. :-)

in reply toHillwoman

Yes I think so. Wanted to try WP but that's out for the foreseeable future. Thanks for replying.

shaws profile image
shawsAdministrator

NDT was always prescribed in the UK and elsewhere in the world. No blood tests were available then and we were diagnosed upon clinical symptoms and given NDT until we were symptom-free. If we didn't recover it was due to something else.

It is very good that your GP has an open-mind and I wouldn't be surprised if he or someone he knows also uses NDT.

I think it is unusual not to have some pamphlet within the packet. Maybe they will take a little longer to respond to you.

in reply toshaws

Thanks, I can be hopeful. My GP didn't know anything about it and I had to explain a lot of things re thyroid issues which he admitted he hasn't studied in depth. We even covered synthetic T3 and prices other than NHS sources, he couldn't believe how cheap it is elsewhere and says GP's are obviously hood winked by the NHS big wigs. He admitted that thyroid patients often know a lot more than the medics shamefully. He even asked if other thyroid patients that see him, go to him with questions whether he could contact me for discussions on meds. I stated I am only a novice and only learning myself but appreciate being listened to and not put down. He stated he wouldn't discuss things with the other GPs yet, I think he wants to keep his job 😁.

shaws profile image
shawsAdministrator in reply to

Your doctor can become a member of Healthunlocked Thyroiduk and he can use a false name. He can, by reading and learning what patients really think of the Professionals knowledge and he will soon be streaks ahead of any other doctor or endocrinologists.

It is also very good that he shows an interest and few know much more than the TSH.

in reply toshaws

Yes, he has said that in the past, he has referred patients to the head endocrinologist in the area if they want to try T3 meds as they have been prohibited for a while in the practice from prescribing it, but has given up doing so. Apparently, the so-called thyroid endo specialist doesn't believe in T3 therapy or NDT. He told me if I am prepared to buy it, I can take whatever I feel will help and he will monitor me but he is being very careful what he's putting on my records, I think he's concerned about getting into professional trouble so to speak. Modern medicine, quite a joke 🤕

shaws profile image
shawsAdministrator in reply to

We know of a number of doctors who were pursued or lost their livelihoods because they followed as they were taught as medical students but now all the medical students seem to know is read a blood test and pronounce the result as none of them now know any clinical symptoms and it was symptoms that diagnosed us in the past.

in reply toshaws

As my 8yr old son would say, What A Crock!! All a conspiracy these days on the medical front don't you think. It's so maddening isn't it?!!

helvella profile image
helvellaAdministrator

MapleMoose,

You can get full information for all USA desiccated thyroid products (and everything else!) here:

dailymed.nlm.nih.gov/dailymed/

Lack of official ingredient information about the Thai products is, and always has been, a very disappointing state of affairs. If I were you, I would most certainly consider trying to contact the manufacturers.

(I have long despaired that STTM post ingredient information that is of very questionable provenance and in at least one case, two sets of ingredients that conflict with each other. And with insufficient highlighting of this inadequacy.)

in reply tohelvella

Thank you, I agree. I did contact the actual manufacturer but no reply of any kind. I am going to have to switch I think, plus I was shocked by the amount of fillers in the Thyroid S when checked on the stopthethyroidmadness site. I can't give that to my GP, it's rather cowboyish as an official medical document. I want to promote NDT not make the sceptism worse. I only went with Thyroid S as it had several good reviews and budgetry reasons.

helvella profile image
helvellaAdministrator in reply to

MapleMoose,

Did you email or use their contact form?

I have just tried a direct email to their international email contact.

in reply tohelvella

I did both, but no joy. It's been two weeks now. I might look into Erfa anyway if it's not too expensive. I've heard it's dairy/gluten free. The more Thyroid S I have, the more my allergy feelings are starting to come back, it must be the chemical fillers. I was OK on starting doses but this wasn't my synthetic equivalent dose, now I am, I not feeling as good as I'd hoped. The lack of info from the manufacturers has probably been a prompt for me to try something else, which I have been reluctant to do due to getting rather fed up with this trial and error malarky.

shaws profile image
shawsAdministrator in reply to

As EbonyEvans suggests, Thyro Gold is another NDT the huge difference is that it doesn't need a prescription and it was invented by one of our Advisers, Dr John L Lowe, before his death, with the aim of not requiring a prescription and giving patients freedom.

His widow, Tammy, now deals with dealing with requests.

naturalthyroidsolutions.com...

The free chapters also within this link are very helpful.

Dr Lowe was angry by the Endocrinologists not permitting patients to have freedom to choose what made them well and by insisting that levo was the only replacement to be prescribed and ignoring the fact that many remained unwell.

in reply toshaws

I am going to do another post re NP Thyroid (Acella). I have been reading about it

Justliloldme profile image
Justliloldme in reply to

Hi MapleMoose

Can I just ask how do you know about the fillers if you can't find a definitive list of what's in them?

I'm just interested as I've been taking Thyriod S for 14 months now & couldn't live without it, but bizarrely enough I've never thought to look into what's in it.

Your GP sounds great by the way, mine has acknowledged the NDT but cannot (or will not) monitor me as he isn't prescribing. Part of me thinks he doesn't really know what I'm talking about - he looked a bit vacant when I started going on about FT3 & FT4 ;-)

in reply toJustliloldme

Hee hee! Know what you mean, he even said "You tell me, your more the expert". Can you believe it, should have asked for some of his salary 😃. I am only going on stopthethyroidmadness site and a list in an email from the supplier on request but this was obviously taken from the above website because it was identical word for word. They wouldn't comment on why I couldn't get it from the manufacturer. I am on 2 grains and have tried to go higher but the more I've been trying, my allergy symptoms come back and now I don't feel any different than when I was on Levo only and great like a lot of people have. I'm thinking of switching to NP Thyroid but it is a lot more expensive than Thyroid S unfortunately.

Justliloldme profile image
Justliloldme in reply to

I think I scared my GP. He asked 'how do you know you're not over medicating' & I replied because I feel well & my bloods are as they should be when taking NDT' - then came the vacant look & 'Can I suggest that you carry on as you are & come & see us if you're feeling unwell' The irony is - I'm only on NDT as they didn't do anything when I was unwell!!

I went with Thyroid S because it was cheap (although my second jar was £30 more than my first 14 months ago) & touch wood it appears to be working well so far.

I think a some people have to try a few brands before they find their match. The good thing is you're on the right road :-)

EbonyEvans profile image
EbonyEvans

My tuppence worth:

I think Thyroid Gold does not give all of the exact ingredients so it cannot be cloned. I recall something on their website stating they do not divulge exactly what’s in there. I know this isn’t Thyroid S and as it’s classified as ‘natural’ and a derivative of animal Thyroid - Category: Over the Counter Drugs. Generic name: Desiccated thyroid. Thyroid-S is a non-prescription form of desiccated thyroid. Desiccated thyroid or thyroid extract, refers to porcine (or mixed beef and pork) thyroid glands, dried and powdered for therapeutic use.

I’m wondering if you can get away with explaining as it’s a herbal/ natural remedy the supplier does not need to include what it contains. As it’s Thailand 🇹🇭 manufactured and so many people use it, there is some proof that it works. As Clutter said - switching to another brand or even get details of a similar brand and using that instead. If you’re using a legit site for your Thyroid S, then there shouldn’t be too much to worry about. As long as you have no allergies to the known ingredients.

in reply toEbonyEvans

Thanks! I'm wondering if I am sensitive to some of the additives in larger quantities. As I am increasing the dose, I am getting allergy symptoms back. At first when I stopped the Levo and was on small amounts of the Thyroid S, my allergy symptoms disappeared which I was delighted and had high hopes for the med, but now, they are coming back sadly. Might have to try another brand with less fillers, Thyroid S have quite a few.

shaws profile image
shawsAdministrator in reply to

When we begin NDT, we start on a dose equal, roughly, to the dose of levo we took. Then every 2 weeks we can increase NDT by 1/4 tablet (1gr) until symptom-free always taking note of temp and pulse and symptoms. Temp or pulse shouldn't rise too high and if so drop to previous dose.

I have been taking thyroid s for over two years now and it's great. I never visit the Doctor or Endo and have my bloods done privately and then post on here for more help and information. I have no thyroid either.

in reply to

That's great news it has worked for you. How much are you on? I have gone down to 2 grains, was trying 2 1/2 as I didn't feel that great (more tired) but as I increase I seem to be more allergic like I was on Levo. I want to feel really well and loose the weight I've gained on Levo, like so many success stories on NDT. I am not hugely overweight but I want to get back to my pre-Levo weight days and feel alive (energetic) again.

Arnold_Layne profile image
Arnold_Layne

This is just a suggestion to avoid having to use expensive NDT: you could always tell the doctor you are using Erfa (or something else you can get data sheets for), while actually using something else. It would be no more dishonest than every doctor I've ever seen.

I appreciate your doctor is good, and I don't think doctors are bad people - the dishonesty shown to patients seems to be in their culture or training.

in reply toArnold_Layne

That's an idea, thanks!

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