Looking for options regarding treatments

[metamorphica]

Hi, new here, though often found information through google to here. Thought i'd join for more help!

Diagnosed in 2012 hypothyroid, when i still lived in Cardiff, Wales. Was put on Levothyroxine and did not do well on it at all. Had Liothyronine added and it improved somewhat but did not feel good enough. Researched and found out about NDT and because of financial situation could not afford private endo, so self sourced , first WPThyroid, then Naturthroid. Did really well on both of those until their supply went to hell. I was told about the Thai brands Thyroids and Thiroid (sp).

( Note i was seeing a decent nhs endo in Cardiff who monitored me whilst on NDT, but he wouldn't prescribe it. My levels on WP and Nature were great until they changed formula)

Tried S thyroid first but did not get on well with it, changed to Thiroid and was better but not to the same state as when i was on wp or nature. I knew the swine fever problem in Asia was causing a lot of issues, so that is when i found out about Thyrovanz and went into that and for a good while,felt pretty good and my levels tsh/Ft4/Ft3 were well within range. Until Covid hit, then supply from New Zealand became a problem. Now the supplement seems different as a lot of people on it have noticed and i too have noticed some symptoms returning.

I looked at Metavive, but after reading here, their formula has changed for the worse too.

I am at a loss. I cannot afford a private endo and private prescription, self sourcing was the cheapest option for me. But i don't know what is working apart from Armour which is out of my price range and that seems to be the only NDT that hasn't been recalled/ had issues in the past few years.

So glandular supplements seem the only real option for me now.

I have found a supplier of T3 in Mexico who will ship to UK if it comes back to me having to return to levo/lio, but i really dont want to return to that unless i have no other choice.

(note - since moved to England and Crawley which is part of the Brighton ccg who wont prescribe T3 on the NHS, so i'd have to self source this and i know many sources in Europe wont ship to UK thanks to Brexit)

[glynisdelport]

I was on Levothyroxine for many years and it was only until I was given Liothyronine that I felt better but recently the different brands that you get do affect me. Teva is the worst of them. I am still trying to get it right. I was changed to Eltroxin then because of the lactose to the liquid Eltroxin and that made me feel awful. I have an appointment with the endocrinologist next week. The Liothyronine is great and I would prefer to have just that but I am told to take both at the moment

[Moggy1212 in reply to glynisdelport]

Hi just wondering how do you get to see an endocrinologist as my GP has never given me this option , are you in the UK ?C athy

[metamorphica in reply to Moggy1212]

Yes UK as my profile states and post.

I asked my GP., referencing the list of symptoms i still suffered from. I did have a good relationship with my GP when i was in Cardiff and my GP when i moved to Crawley England had no choice but to refer me on to one

[glynisdelport in reply to Moggy1212]

I was taking Liothyronine which I was getting from New Zealand and due to that he referred me to one.

[Chocs09]

I am liothyronie and have been for many years. It doesn’t live long in your system like Levo and you must take it in 3 doses throughout the day for it to be beneficial. Some Endo’s tell you 2 doses. I have some books that will tell you more about this drug. If you want them let me know. Just pay the postage. Feel free to private message me for any more info

[metamorphica]

Just to clarify - I HAVE BEEN on Levothyroxine and Liothyronine for many years before i found NDT. I know what they all do and how they work.

My question is what is available right now that's safe.

Armour is too expensive, but seems the only safe NDT left. My CCG does not prescribe Liothyronine so would have to self source if i had to go back to that (which is what ive been doing for years with NDT and glandular)

Even the glandulars like metavive, thyrovanz are either changed and not as good or like Thyrogold not available.

THIS is what i'm asking. What else is out there? Or what sources have people found for self source T3 (i know to pm or be pm'd about that)

[RedApple Administrator in reply to metamorphica]

metamorphica, 'Armour is too expensive, but seems the only safe NDT left. '

Quite a lot of members here take Thyroid-S which they self source from Thailand. I don't know whether you consider that to be 'safe'.

[metamorphica in reply to RedApple]

.."Tried S thyroid first but did not get on well with it, changed to Thiroid and was better but not to the same state as when i was on wp or nature. .." As my original post states.

[RedApple Administrator in reply to metamorphica]

I understand it has been reformulated since you first tried it. I don't know how different it actually is now though.

Until (and if) Nature-Throid comes back on the market, it's pay out for Armour or make do and mend with levo and self sourced lio then.

[metamorphica in reply to RedApple]

I've not seen anything about it being reformulated, only that the company lost it's licence then got it back again ( unlike the ones making Thiroid)

[helvella Administrator Thyroid UK in reply to metamorphica]

I don't think we have ever seen that the company lost its licence. Do you have any further information?

(Many members seemed to think it was due to lack of supplies of porcine thyroids due to African Swine Fever in Asia.)

[metamorphica in reply to helvella]

Two places refer to it, Stopthethyroidmadness and Thyroidblog.com

TR Man and Thiroyd (Greater Pharma) have not had their licenses renewed, but Sriprasit recently got back theirs and is selling it direct through their own website.

[RedApple Administrator in reply to metamorphica]

metamorphica, 'Sriprasit recently got back theirs and is selling it direct through their own website.'

Are you sure about that? Please send me a PM with the website info so that admins can check it out.

[metamorphica in reply to RedApple]

sent you a pm.

[helvella Administrator Thyroid UK in reply to metamorphica]

I have jut gone to both those sites and have not been able to find that information.

Could you, possibly, point me at the page(s)? Please.

[metamorphica in reply to helvella]

stopthethyroidmadness.com/2...

thyroidblog.com/en/thyroid-...

[helvella Administrator Thyroid UK in reply to metamorphica]

Afraid I still can't see that on STTM.

Thyroidblog mentions it but leaves it very wishy washy without any explanation of where she found that out.

[Moggy1212]

Hi metamophica Thanks for sharing your story, I am from Cardiff but living in Exeter now so I'm not holding much hope with NHS. I think I will have to go on with the Levothyroxine for the time being , and when Covid and Brexit are settling down I will try and source from abroad. I can't afford to go private or to spend money only to find it either doesn't work or will stop producing .

Cathy

[metamorphica in reply to Moggy1212]

Yeah i have a feeling that's what i may have to do, though i will self source T3 as well as i know i will go 5 steps backwards in my health if i just go onto levo.