NDT : I am worried for when I run out of Thyroid... - Thyroid UK

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BlueMundo profile image
32 Replies

I am worried for when I run out of Thyroid S and can no longer source an alternative.

My life has improved so much and it’s cruel to imagine a world where NDT is unavailable and I’ll return to a half life.

Is my fear unfounded or is this something I need to prepare myself?

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BlueMundo profile image
BlueMundo
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32 Replies
Veritate profile image
Veritate

I too was worried just like you. I’m still waiting for my NDT, having ordered it middle of May.

My supply ran out 3 weeks ago, so whilst I wait for its arrival, I’m using Metavive.

I was concerned initially as I really didn’t want to nose dive with taking an alternative product. 3 weeks in, my body seems to like it but I’m conscious things may change & I’m keeping an eye on symptoms & how I feel/what my body tells me.

It’s all I can do to wait & see.

BlueMundo profile image
BlueMundo in reply to Veritate

Thank you Veritate.

I haven’t heard of Metavive, I’ll have to look it up but I hope you continue to be well on it.

Why does life have to be so complicated? Having discovered Thyroid S I thought I had got my health sorted more fool me.

Veritate profile image
Veritate in reply to BlueMundo

Metavive is made by Procepts.co.uk. Metavive l & ll are porcine thyroid gland products. They are unable to declare any hormone content. I took 1 capsule for 2 weeks and now I’m on 2. Seems ok so far.

I agree, life is difficult when you’ve thyroid problems to contend with, however, this forum is an absolute life saver for us all.

All the best.

HowNowWhatNow profile image
HowNowWhatNow

Can you please tell me what difference taking NDT makes to you compared to just taking thyroxine?

I am asking because thyroxine doesn’t seem to work for me and after nearly 5 years of doctors not listening... I’m ready for a change. Sorry to hear it’s so hard to source now.

BlueMundo profile image
BlueMundo in reply to HowNowWhatNow

Hi Geogeor,

Sorry to hear thyroxine doesn’t seem to be working for you.

For me Thyroid S removes the constant breathlessness I get on thyroxine only and has let me live a more active live. I really do just take my Thyroid S in the morning and get on with my day.

I have been able to exercise every day for the last 4 years and walk at least 6km/ 1 hour every day. I can also now swim without my limbs feeling like they want to fall off. I am more active, lost 2 stone, feel brighter in myself and every day isn’t a lottery on how I am going to feel when I wake up.

It really has been a miracle for me. I have an Apple Watch and don’t allow myself a day off from exercise because I can’t return to the woman who couldn’t get off the sofa and was always tired.

I’m not saying Thyroid S cures everything but combined with exercise and determination to stay active it really has been unbelievable for me hence my fear of running out.

HowNowWhatNow profile image
HowNowWhatNow in reply to BlueMundo

I am hoping for a miracle .. so may give it a whirl.

Thanks for your message.

How did you get your dosage of Thyroid S right? Did you move onto it with the help of an endo or other kind of doc?

BlueMundo profile image
BlueMundo in reply to HowNowWhatNow

I followed advice that you start with half a grain and up it by half a grain every 2 weeks until you feel ok.

I went rogue and didn’t have any input from my GP or an Endo. Under their care I ended up with a TSH of 19 so I figured I couldn’t do much worse on my own.

HowNowWhatNow profile image
HowNowWhatNow in reply to BlueMundo

Oh lord. I was at around 20 when first diagnosed. Not good.

Seems we all have to go rogue to get anywhere!

Thank you for your pointers - so much appreciated.

Veritate profile image
Veritate in reply to HowNowWhatNow

I’ve only ever been on NDT, never taken the Levo route, I’m afraid.

Many people don’t get on with Levo & then some people can tolerate it. When it comes to thyroid treatment there are different combinations which suit different people since thyroid problems are individual to us all.

I’d say if your not happy with it after 5 years them most definitely look at something else. Are you optimal with your vitamin & mineral intake? If you’re are then your treatment has a far better chance of working?

HowNowWhatNow profile image
HowNowWhatNow in reply to Veritate

Thanks, yes, I am quite up and down with vits / minerals since my Hashi’s DX - such is the auto-immune lot - and yes, even when they are in balance (have adjusted my folic acid, B12 and ferritin levels a lot) I still feel out of whack.

Who do you see re: your thyroid? Just your GP or also a specialist? Having only ever seen my GP - who goes by TSH alone, if at all - I’m curious about how the other half live!

Veritate profile image
Veritate in reply to HowNowWhatNow

Give the NDT a go as LindaC suggested. I’m so glad I did.

I never went down the GP route. I became a patient of Dr Peatfield after having read an article he’d written.

Then I found this fantastic forum. A combination of research and the invaluable knowledge of members mean’t I didn’t feel the need to see him again.

Kick the GP to the kerbside (except for the tests you can manage to get out of them) and stick with this amazing bunch to help with your thyroid.

😊

LindaC profile image
LindaC in reply to Veritate

I was first a patient of Dr Skinner - did the proper thing, trialed on Levo first - I clearly didn't need it. Few weeks in feeling good, then became so wired [getting up each morning 'kicking my height' and singing - thought I was back to my 'normal' - toxicity, so had to stop]. Dr S - Armour Thyroid. Dr P - said will need T3 alone. Both doctors were lovely, gentlemen... in an endo world full of... Take care xox :-)

LindaC profile image
LindaC in reply to HowNowWhatNow

Some endocrinologists desperate to 'be right' have made it increasingly difficult for those in need of an alternative to Levo. It was perfectly acceptable and within the domain of a GP to prescribe alternatives [certainly up to and a little beyond 2013], yet was quashed with a big Orwellian Boot on our necks due to their little ideas. Misogyny got bigger in the 21st Century and goodness how hypothyroid men must feel right now... as if it isn't bad enough for them. :-( If you can get your hands on NDT, give it a go. I did well on it a while, then moved to T3 alone. Best wishes. :-)

BlueMundo profile image
BlueMundo in reply to LindaC

I lost all faith in GPs and Endos. They didn’t listen to me and my symptoms they just saw a depressed woman and wanted to ply me with HRT and anti depressants. It’s all in my head they would say.

Under the endo at the hospital they altered my dosage based on their interpretation of combined therapy and how ‘dangerous’ T3 is that it resulted in my TSH going to 19; all they said was are you sure you are taking your medicines? Yes of course I was!

it was then that I decided to try Thyroid S. I’ve never looked back.

LindaC profile image
LindaC in reply to BlueMundo

Not difficult, is it!? Sure I've replied to you already :-) Stay away from them! :-) xox

BlueMundo profile image
BlueMundo in reply to LindaC

Sorry are you talking to me LindaC? I’m a bit confused.

LindaC profile image
LindaC in reply to BlueMundo

Yes, apologies - crossed purposes - mine! Your lost all faith, I replied "Not difficult, is it!?" I thought I'd replied to you earlier... ?? And "Stay away from them", meaning you seem sorted on Thyroid S. Apologies - I'm up to my neck with a piece of work and dipping in and out of different things. Take care, stay safe and well. :-)

HowNowWhatNow profile image
HowNowWhatNow in reply to LindaC

Thank you. I hear ya re: misogyny.

I’ve only had real problems accessing good medical care for me when it comes to specifically / majority female problems: childbirth, thyroid endocrinology and the like. It can’t always be a coincidence.

Glad T3 works for you!

Since having a hypo diagnosis, it’s as if i can only motor in 2nd gear, 3rd when I’m running flat out. And I feel nostalgic for the days when gears 4 and 5 were an option. Just need to find that one doc who doesn’t tell me it’s all in my mind!

LindaC profile image
LindaC in reply to HowNowWhatNow

Yes, it's rife in some 'female' arenas - but I'm seen that men have a bad time with them too. No, not a coincidence - albeit they can abound - not in those disciplines. Wonder if that's why they choose them!? :-)

NDT worked great for 2 1/2 years but, in the days that I still believed ranges were important, I need to up the grain.age but couldn't get testing done - GP sending to the lab, but refused to test - so I finally went to T3 alone. Dr P had told me in May 2010 that's what I'd need... it could be better but I've other things gone awry now.

It seems that sometimes hypothyroidism is left too long and that hampers things for us; mine certainly was. Don't listen to their 'in the head' stuff - disgraceful! Best of, keep on pursuing, and be well. x :-)

HowNowWhatNow profile image
HowNowWhatNow in reply to LindaC

Thank you Linda C. I will keep your advice in my head!!

And I hope you can get the things gone awry back under control. Would you go back to NDT? X

LindaC profile image
LindaC in reply to HowNowWhatNow

Thank you - I moved to mainly T3 but kept on some Amour, first prescribed by Dr Skinner, early 2010 and then my GP prescribed via NHS funds. Just as I was thinking about adding some back, another GP cancelled my script in Jan 2017... an endo, I had new [likely unrelated, in hindsight], from Jan 2015 and got to see an endo who UN_diagnosed me in July 2015, having had my diagnosis accepted in Feb 2010 by GP. That is how crazy these control freaks are.

Yes, I would go back... NDT now seems more scarce now than T3!

Yes, keep it in your head, I'll send you something tomorrow as a message... to keep in your head. Best Wishes xox

Polaris profile image
Polaris

Just to reassure perhaps BlueMundo - I ordered ThyroidS in April and then received an email end of June to say it had been delayed due to Covid but they would now post. I received packet this morning - best birthday present !

BlueMundo profile image
BlueMundo in reply to Polaris

That’s brilliant, Happy Birthday to you! It’s reassuring too. Only down side is the price increase from when I first started taking it but I hope that stabilises soon. Could you PM me your supplier please?

Thanks again.

Papillon2011 profile image
Papillon2011 in reply to BlueMundo

Hi there. I am also in Thyroid S. I got my last supply through someone now living there. He went to a pharmacy and they got it in for him within a week. The price has gone up. I paid £65 for 500 tablets. But it’s worth it !!

Veritate profile image
Veritate in reply to Papillon2011

I wish I was paying £65 for my 500 Thyroid S tablets! Good for you 👍🏻😊

Papillon2011 profile image
Papillon2011 in reply to Veritate

How much are you having to pay then?

Veritate profile image
Veritate in reply to Papillon2011

Mine cost me £166

BlueMundo profile image
BlueMundo in reply to Veritate

For 500 tablets?

Veritate profile image
Veritate in reply to BlueMundo

Yes, crackers isn’t it?

BlueMundo profile image
BlueMundo in reply to Veritate

I had heard 500 tablets would cost the same as 1000 but that’s even more than I’ve ever paid for 1000. Like Papillon2011 says, I hope prices come down again. I can’t cope with a liothyronine type price hike!

Papillon2011 profile image
Papillon2011 in reply to Veritate

That’s just extortionate. Hopefully they will come down in price again.

Papillon2011 profile image
Papillon2011 in reply to Veritate

Mind you I didn’t have to pay shipping. He sent them as a gift to me.

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