T.R. Mann

[Margo]

I have been taking TR Mann for the past 18 months and being without a thyroid have found this medication has helped me more than anything else. However in March next year I will run out. The company is no longer making this medication and am wondering what other people that also take this are planning to do?

[shaws Administrator]

It's good to look ahead before any medication is withdrawn. I hope a member will be able to respond to your question.

Someone may know of an 'option' you can source.

[Margo in reply to shaws]

Thank you shaws . I noted in fact it is in fact 2 years I have been on this medication. I remember there were a few of us on this site that were taking it, and they will be in the same position as myself...

[helvella Administrator Thyroid UK]

I think you are more or less stuck with Thyroid S or one of the north American products (Armour, Erfa).

[Margo in reply to helvella]

Thank you helvella , I have tried Armour and it didn't suit me. Still hopingsomebody will get back to me in the same position. Quite a depressing thought starting something new. It has been so hard over the years to find a product that works since having my thyroid removed in 2003.

[helvella Administrator Thyroid UK in reply to Margo]

I suspect most who were taking it having switched already. Obviously, any of them might respond, but you must have had a good stock to last this long since it was dropped as a product.

[Margo in reply to helvella]

Yes I was very canny. I bought up to expirey date in March 2022, when I realised it actually worked for me.

[meme in reply to Margo]

Hi Margo

I am in the same position as you!

I have over 500 TMan left, I take 1 and 3/4 a day.

I plan was to try Thyroid S, as like you, I did not get on with Armour when I last tried it.

Metavive did nothing for me.

Good luck to us both.

[Margo in reply to meme]

Thank you meme . I take 2 daily in split doses. Is your expirey date March 2022? I will probably go for Thyroid S, at least we can compare notes.

[meme in reply to Margo]

05-03-22 expire . But as they are sugar coated they will last a lot longer than that.

[Margo in reply to meme]

Same as my batch. I hadn't thought about the sugar coating. I have enough to take me to expirey and that's that. Thanks.

[waveylines]

Sorry to hear this Margo. It is a nightmare having to switch. Ive had to do the same as was on Acellas NP that worked really well......except for its variations as had to keep tweaking my dose. Unusual for me as am usually very stable. Moved across to Armour recently.....am stable but dont feel as good on it am wondering if I may have to add a bit of T3 in to the mix. Erfa I sank like a stone after they moved factories (and country!) Armour isn't the same as it doesnt dissolve under the tongue like it used to so am swallowing with glass of water. I currently get mine on the NHS or otherwise think Id look at ThyroidS (not available on NHS) Cant help you with the switch but wish you well.

[Margo in reply to waveylines]

Thank you for your informative reply waveylines it truly is an uphill struggle as you know yourself. It's because I have been managing a lot better I haven't had the need to check in on HU daily as I used to. Thank goodness for this site, so much useful information.

[waveylines in reply to Margo]

No worries. Hope you get sorted. I do know others on stopthethyroidmadness have added a bit of T3 to their Armour. Its hard to judge for me at the mo as have had a nasty virus for 6 weeks and a pile of stress before that so need to give it a longer run! Ive never had to add T3 in before.This site is amazing -I have been helped so much over the years. I dread to think what state Id be in otherwise. That and lovely Dr Skinner who came to my rescue as a stupid GP put me on a starter dose of levothyroxine and a year later hadnt increased or even checked......of course my TSH soared up and thyroid hormones plummetted down. I could barely move and physically looked like the picture in old medical journal.....puffed up and moon faced and put on stones. .Close to loosing my job and was on reduced hours and pay. Its criminal the way we get (or dont get!) treated. After that I realised I needed to read up and become more knowledgeable as couldnt rely on a GP to treat me optimally. Infact as a rule of thumb have found the medical profession incredibly ignorant on the subject.....scarily so.....& have had to politely fight my corner on a few ocassions.

[Margo in reply to waveylines]

I have had a lot of very good reports of Dr Skinner, he was in the north as I remember, presuming you are that way too. I saw Dr Barry Durrant Peatfield who got me on the road to better health. I have zero faith in the medical profession and simply do not trust them one jot. Hope you are feeling better now waveylines.

[meme in reply to waveylines]

Love to know how you get it on NHS please.

[Margo in reply to meme]

Who said I get it on the NHS? I paid for TR Mann myself.

[Hidden in reply to meme]

No Thai NDT available on NHS - nor any NDT come to that

[Margo in reply to Hidden]

Exactly Hidden . It's even a fight to get T3 these days.

[Hidden in reply to Margo]

A fight that very few win I’m afraid. 😕

[waveylines in reply to Hidden]

Armour or Erfa IS available on the NHS but its a long hard fight to get it.....l!!! Its a question of whether you can find an endocrinologist on the NHS willing to prescribe it......most wont.

[Margo in reply to waveylines]

Thanks for info.

[Hidden in reply to waveylines]

You’re right Waveylines but as it’s not licensed in this country they would be taking an enormous risk by breaking the NICE guidelines. At least Liothyronine is licensed but just ‘too expensive’. Of course they don’t declare that the expense is the reason. They prefer to frighten patients with tales of doom, death and destruction if they take it.

In terms of NDT, as it’s not licensed here, they'd far rather that we took the risk by buying our own NDT from overseas. No accountability, no cost to the NHS.

[waveylines in reply to Hidden]

It doesn't need to be licenced as its regarded as a grandfather med but it does need your GP to underwrite it....& they can only do that if a nhs endo recommends it. If you've been on it a while like me the risk is tiny and the GMC won't touch them as its been done through an agreed route. Am not saying its easy but I dont want others to think its not possible....it is but you have to persist and not give up & be prepared for the long haul self medicating as you go..The cost of ndt has really shot up in price so worth it!

[helvella Administrator Thyroid UK in reply to waveylines]

Grandfathering was a US concept.

For example, levothyroxine was grandfathered in the US until around 2000. When the FDA demanded all manufacturers apply for approvals as if it were a new medicine. (That put paid to the grandfathered status of levothyroxine.) The reason was largely the very poor and variable quality.

Prescribing any medicine that is not licensed, whether it has no licence or not licensed for the specific purpose, is the responsibility of the prescriber to a much greater extent than fully licensed medicines. That works strongly against them being prescribed at all.

[waveylines in reply to helvella]

Thanks Helvella. 😊 Apologies, though I didnt say it was liscensed....I thought its grandfather status meant it didn't have to be which is why it hasn't had to go through the same process as other medications. However it does have to perform to certain standards of content. The NHS list it on the NHS Pharmaceutical list as a potential treatment.....

[waveylines in reply to waveylines]

Link to Thyroid UK giving more information:- thyroiduk-org.cdn.ampprojec...

[waveylines in reply to meme]

You will need to research carefully to ensure your GP refers you through to an endocrinologist who is prepared to prescribe a natural dessicated thyroid extract. Your GP cannot prescribe it unless it is recommended by a NHS Endocrinologist. Thyroid uk have a lost of thyroid friendly doctors but youd have to find out which of those are reallybndt friendly too and on the nhs. Its not easy and has got tougher becaise mant are now scared to predcribe on the nhs incase they get into trouble. I found I also had to move GP Surgeries as they also have to agree to prescribe it on "a named patient basis." Its a long journey.....took me three years during which time I paid for my own ndt but told my GP what I was doing. They agreed it was doing me a lot fo good but wouldnt prescribe hence the move.

The endo who I saw has retired sadly.

[Margo in reply to waveylines]

I have been going it alone for a long time, my G.P. doesn't know what I take, he thinks levo/T3, which suits me and enables me to get blood tests now and then.

[Hidden]

It´s terrible when a brand either is reformulated and works less well or is discontinued...leaving patients desperate for an alternative. I was doing great on Euthyrox for years until they reformulated it to include mannitol, and after that no brand worked as well. I am in the process of switching over to NDT and opted for Thyroid-S as it´s available without a prescription and cheaper than prescription NDT (although it is more expensive than it used to be). Also, only Armour and Erfa are available where I live, and both have been reported to be problematic.

I think Thyroid-S works very well. I decided to go for it as it has great online reviews, and I have to say it seems to be both potent and stable. The pills are hard and coated so not sure how well they dissolve sublingually...I have always swallowed my thyroid meds anyway. What I am trying to say is that I can recommend it without hesitation

[Margo in reply to Hidden]

Thank you so much Hidden that's very encouraging. I think I will definitely go down that route. May I ask where you get your supply from please? If that information is allowed. Otherwise would you mind to private message me? Thank you.

[Hidden in reply to Margo]

Will PM you as that info cannot be posted on forum.

[Margo in reply to Hidden]

Thank you.

[Micky7]

I was on TR Man..love it! I took probably 1000pills/ 3 grains daily.Then i made the switch to Thirovanz( 200 mcg daily).Worked wonderful( but tbey changed the formula).

After that it was roller coaster: tried few glandulars( no good results).Went back to old Thyrovanz..was good for few months.The one i take now is called Life Giving Bovine Thyroid..i masivelly lost part of my hair..in 1 month.

Iam still taking it+ 12.5 fake Tiromel( feeling ok.ish for 2 days).Waiting for Metavive IV and i will order real Tiromel.

Is a crazy journey!!

I didnt try Thyroid S..i have 4 pills , but i didnt try it.

I bought Thyroid long time ago..didnt worked for me..i gave 500 pills to a friend in Italy.Anyway, at the momment exists only Thyroid S from Thailand.

The transport is horrendous, though.

[Margo in reply to Micky7]

I was hoping you would reply Micky, I remember you got on well with TR Mann. I have still got quite a few pills left which will take me to their expirey date, and then of course I am back on the hunt. That's very worrying that you lost your hair, what a shock for you. Why didn't you take Thyroid S? I was thinking of taking it, I am quite worried now to be going back to uncertainty and feeling ill. I can get T3 from my doctor and of course Levothyroxine, but not keen to take either of them. I can't remember if you have a thyroid, I don't have. Have you considered Levothyroxine and T3?

[Micky7 in reply to Margo]

I still have my thyroid.Honestly i didnt go on Thyroid S because i thought is stronger than Thyroid( which i had horrendous headache).I am waiting for Metavive..and if it doesnt work , i dont know.

On Eutirox i wasnt since 2012..not eager to go back on it.

[Margo in reply to Micky7]

It's a nightmare isn't it Micky. Having a thyroid makes a difference. Well when I am ready to switch over, probably to Thyroid S I will let you know how I get on. Stay in touch, it's nice to swop stories. Take care!

[Micky7]

Take care!hugs!

[Margo in reply to Micky7]

Thank you, and you Micky x