Shock, horror, Thai Thiroyd discontinued, what ... - Thyroid UK

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Shock, horror, Thai Thiroyd discontinued, what now?

Hi All,

Following the discontinuation of the Thai NDT Thiroyd, I am trying to work out how to transition from my supply of self-prescribed thiroyd to something else, with the minimum of suffering. My Thiroyd will last me until December 2020 so I have a bit of time to do it in. Firstly, I presume that if I go to my NHS GP then they will insist that I am completely off the Thiroyd in order to take blood tests to determine the state of my thyroid? What if I go to a private GP here in UK? I suppose that they will have the same requirement? And after that, and if they decide to treat with levo, will they do it by measuring TSH only, not T3, which we all know is inadequate. I started to self-medicate because I didn't want the stress of dealing with doctors who are not on the same page re. thyroid treatment, but I didn't foresee this kind of supply shock from sourcing my own drugs. Maybe I should have. I see that some people supplement their levo with T3 sourced privately, but I imagine that T3 has the same quality and supply issues as the Thai NDT?

So if I want to treat with another NDT then I presume that I'll need a prescription for that and the question becomes where would I get a prescription? I'd be willing to travel to Europe to find a doc willing to prescribe it, and to spend my savings buying it at huge cost, but there still remains the question of if I have to completely discontinue my Thiroyd first. I know that this would mean a significant period of feeling like crap. I lived a suboptimal life for years because my thyroid was below par, and now I've got my life back I just hate the idea of losing it again. But if the whole Thai NDT market dries up permanently then maybe I'm not going to have a choice.

So has anybody successfully done the transition from self-prescribed Thai NDT to a life that involves doctors and prescriptions, and can you tell us the process that you had to go through?

Many thanks,

June

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17 Replies

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Hillwoman5 years ago

Since you've successfully self-treated for some time now without doctor input, why would you contemplate seeing a doctor again because of a supply problem with Thai NDT? UK doctors and endos generally have no experience of treating with NDT. A rare few do prescribe it, but you would need to email Dionne, tukadmin@thyroiduk.org, for the list of thyroid-friendly specialists.

Quite a few people on the forum have switched to Metavive, available online in the UK as a 'thyroid supplement'. BadHare has some experience of switching, I believe, and others may wish to add their own experiences.

BadHare• in reply toHillwoman5 years ago

Yes, I self-medicate after giving up with endocrinologists who didn’t do my stress levels any good, as it seems with so many of us.

I take NDT & T3 in varying seasonal doses & ratios. Swapping from Nature Throid to Metavive last year has been fine & I wish I’d tried that sooner as it’s more ethically sourced.

As you have so long to experiment until your NDT runs out, you could make the change over to another medication/supplement slowly to see how you feel.

June25• in reply toBadHare5 years ago

Badhare, many thanks for your reply.

I am really interested in your experience with Metavive. Do your bloods show that Metavive is supplying you with enough T4 and T3 to meet your needs?

On average, how many grains of Nature Throid were you on per day, and what is the equivalent dose of Metavive that you have found works for you? Which Metavive do you take?

June

BadHare• in reply toJune255 years ago

Sorry June, no blood tests for a while. Endo’s said they won’t test my thyroid hormones again (a fit if pique as I’m daring to treat myself for secondary hypothyroidism) & I can’t afford the tests as well as the meds & supplements. After 40 years being hypo, I’m happy to go entirely by how I feel re symptom relief: too cold, fatigue, aches, skin issues or dry lips >NDT/Metavive, overeating <T3. If I need lip balm more than once a day, I increase piggy meds. I’ve m reduced T3 over the past year or so. I was on one grain of NDT & 50mg if T3 in previous winters, though sometimes needed to ration NDT. I found I needed less thyroid hormone when I started injecting B12. I’m presently taking 4 Metavive ii & 6-7mg of T3 (1/4 tablet). I’ve been adding an extra Metavive once or twice a week, & then take only 3-4mg (1/8 tablet) of T3 on those days. I’m hoping to decrease Metavive next month & increase T3, mostly because it’s cheaper.

LivingWithHT• in reply toBadHare5 years ago

Lol, funnily enough, going by how you feel and physical symptoms has probably served you far better than relying on blood tests. So many times my test results came back looking fine or not so bad but I’d be feeling awful and/or still experiencing major symptoms so the numbers didn’t even tell half the story.

Catseyes235• in reply toBadHare5 years ago

That sounds so complicated ..I’m so lucky Levothyroxine is fine for me. My daughter was better on NDT hence my interest in Metavive. Where do you source your T3 if you don’t mind me asking?

June25• in reply toHillwoman5 years ago

You are so right. You have helped me come to the conclusion that I should do my best to find another source of NDT that I can get without a doctor or a prescription, that works for me.

Maybe Metavive.

Thanks

June

Angel_of_the_North• in reply toJune255 years ago

Metavive is really expensive

LivingWithHT• in reply toAngel_of_the_North5 years ago

It is...but if one benefits from it, it will ultimately be less costly than letting your health deteriorate and having to pay even more down the line for medical help. And...companies know this :). They know how to corner us so we inevitably have to give in.

Angel_of_the_North• in reply toLivingWithHT5 years ago

If it does. Buying NDT might work out cheaper.

LivingWithHT• in reply toAngel_of_the_North5 years ago

Yes but I, and many others like me who don’t do well on synthetic medication, can no longer obtain our usual porcine NDT meds and rarely does a doctor readily prescribe NDT for thyroid patients. That’s why OTC thyroid supplements become a last resort for some.

Any way, where can one even buy good quality and effective porcine NDT without a prescription nowadays? Even the ones that require a prescription are no longer effective for the majority. All the Thai NDT brands are either out of production or so low in stock that their prices have tripled. There are currently no viable alternatives to porcine NDT that are not so costly.

Evita675 years ago

My situation is quite similar: stopped Thiroyd 20months ago. Now TSH is already 3.85 although fT3 is 59% and fT4 is 41% and the gland has grown a bit still hypo. No doc wants to prescribe NDT no doc believes Im miserable on T4only. Novothyral will be my only option. Just wonder what has happened in Thailand?

June25• in reply toEvita675 years ago

Evita, thank you for your reply.

So am I understanding you, that you have stopped the Thiroyd and you are not taking any thyroid meds at the moment? Is that intentional to try and revive your thyroid gland, or is it just by force of circumstances because the Thiroyd has run out?

I agree that the doctor situation is abysmal and I'm not even going to go there. Nobody should have to feel miserable because of thyroid insufficiency when the condition is well understood and treatable. I hope that you find the right way for you to feel well,

June

Evita67• in reply toJune255 years ago

Youre right- Im pushing my gland to work although being hypo again is no fun, everything would be not so bad if not menopause. Still hoping to selftreat later when my T3 and T4 are a bit better with Novothyral, I will probably start taking estradiol and progesterone cause sweating is just terrible. And again stop taking artificial T4 plus T3 to allow my thyroid work. We know the treatment with use of artificial hormons doesnt help to reduce symptoms just TSH and Labs change, thats why Im taking what is necessary to regain better Labs and introduce the other hormones. Maybe within the time the NDT will be available again. We should all shout out loud to finally get the staff we need to survive. No matter what big pharmas business is. They may be researching NDT now to introduce it as a new medication soon. Otherwise the Thai factories would be working. Right?

shaws• in reply toEvita675 years ago

The fact that the BTA et al made False Statements about NDTs in order to get it removed from the UK and despite Dr John Lowe writing a Rebuttal to them every year for three years (before his untimely demise) they never did respond. Dr Lowe was also a scientist and researcher and he sent them the following:

drlowe.com/thyroidscience/C...

They never did respond as they wanted to remove NDT from the UK not caring one iota that many hypo patients - whose health was restored - were 'dumped' and with no options except to source abroad (saving NHS money). You cannot put a price on getting the hormones that makes a person recover. If levo had suited them they wouldn't have searched for alternatives. Many don't improve on levothyroxine alone, neither is T3 prescribed now, but there is a combination of T4/T3 which scientists have proven could restore health to many. I suppose that makes the difference between 'professional and vocational or 'caring and uncaring.'

They just do not care and the fact that their False Statements were made to 'seem' that NDT wasn't suitable for patients. How can experts(?) supposed to be caring and do everything to relieve in their power to restore health, If someone isn't hypothyroid they just cannot understand what we, the patient, experiences. Maybe if we remove their thyroid glands and not give them replacements might chang their minds - wishful thinking.

Despite the fact that since 1892 when NDT - with no blood tests and only symptoms - was first introduced (obviously not in the form we get it today) and hypothyroid patients did not die a horrible death.

I wouldn't be surprised if Big Pharma was behind the withdrawal of other forms of hormone replacements as it affects their profits. After all if we're not improving on levo we have to have some sort of alternatives to try to relieve symptoms. Plus don't forget the 'extras' to try to relieve symptoms that levo may not do.

June255 years ago

Yes, and it seems to have been this way forever - actually historically since Big Pharma took over the market with levothyroxine, and the medical profession along with it. The whole rotten situation comes down to how the most profit can be made out of the suffering of others. So what's new?

June