Is anyone else still having trouble with nhs t3?

[jeans]

I have not been well since May/June on nhs t3 combined with t4. I have bought some t3 off the Internet (mmds). I tried, at first, taking a mixture of both nhs and mmds ones and although felt better still not right so now am taking all mmds ones and am a different person nearly back to my old self within a week!!! My gp doesn't seem to think it matters and hasn't agreed to name a different make on my prescription so I am going to have to become ill again on nhs meds as I have a blood test on Tues!!!

[lolajone]

I am on 100 mcg nhs t3/day still got hypo symptoms seem to be worse on latest batch 81377 will be putting in a yellow card

[jeans]

I have yellow carded 4 batches so far since June. 81377 is one of them but I have not had any feedback as yet which, ok, things take time but I've been ill all summer - the best summer for years!!!

[lolajone in reply to jeans]

That's interesting because I'm feeling worse and until I saw this post I hadn't thought about the batches but it ties in

[Hidden]

what does this mean? yellow card....x i alternate between my nhs and some i bought before i got them on nhs...and some days i feel really crappy! i might check mine when i get home

and what is mmds? i have 2 lots some called tiromel from Turkey and some other ones from Germany

[lolajone in reply to Hidden]

Hi you can report adverse affects of meds to the MHRA and I think the system for doing that is called yellow card

[helvella Administrator Thyroid UK in reply to lolajone]

Correct. If you or anyone else believes there is a problem with a medicine or supplement sourced in the UK, report it:

yellowcard.mhra.gov.uk/

Rod

[Totoro in reply to helvella]

Could you tell me which batches have been reported so far? I had a bad time with hypo symptoms recently and after a week I checked the batch. I thought... surely there can be more bad batches?? But it turned out that I was taking an older batch... 80928 which had been reported.

Now I understand how everyone was feeling on it. I went downhill fast.

I'll be getting a new prescription filled soon, it would be good to know in advance which ones are bad.

Thanks

[helvella Administrator Thyroid UK in reply to Totoro]

Sorry. No - I can't. I take only levothyroxine so do not need to get involved.

Trouble is, what do you do if you know the batch numbers? It would probably be very difficult to go round pharmacy after pharmacy asking if they have any that are "not batch aaa, bbb, ccc, or ddd". You might find you get little co-operation.

Also, knowing the suspected batches can make it very difficult to be unbiased. If I had a batch which was suspect, I might react by feeling something was wrong when it wasn't, or by ignoring bad effects. The psychological side is very strong. It would be very difficult to achieve a balanced view. And I am saying that about myself.

It is quite possible that an issue is within batches. Knowing batches might obscure this facet.

I am 100% behind reporting bad batches. But I think it is possibly best to be ignorant until a batch is proved to be bad - either by your own experience or by being publicly reported (as in a recall).

Rod

[jeans in reply to helvella]

You soon know if a batch is bad! I have had the problem of going round all chemists trying to find one that is not one of the bad batches that I know of and ended up buying it from turkey!! Dr S said to report it to chief medical officer that yellow card isn't enough.

[jeans in reply to Hidden]

These are from Turkey cynomel is trade name

[Jow11 in reply to Hidden]

Hi Traisey, you mention you've got some T3 from Germany. Is that Thybon? How did you manage to get it? I'm trying to get hold of German Thybon 100 Henning but I'm not sure how to do it. Would a German pharmacy ship it to me? Or would a chemist in England order it for me? My dr would give me a prescription. Thanks.

[Hidden in reply to Jow11]

Hello, yes I got it from a German online pharmacy it was super easy... Ill have to try and remember the name, it was over a year ago but ill come back to you! x

[sporty333]

What is all this with foreign bought T3! Does it really make that much difference?!! I've only know NHS T3 so wouldn't know any difference ! I have heard before foreign stuff is strong....

[Hidden]

well I didnt have any choice at that point....and im really happy with the Tiromel, i think its better than the UK one

[Hidden]

Mine are made by abdiibrahim they are supposed to be the best, I did load of research before... I found out thru a body building website as they all take them (which is obviously quite disturbing!)

[marmaris in reply to Hidden]

Hello traisey glad that I saw your post as my partner is in Turkey and he has just purchased 10 boxes of Tiromel for me. I had also researched them and printed out a researched print that I found onsite headed which brands of T3 are the best.. It states that Cynomel Mexican the one that I am currently taking is the purest and best recommended. It says that Tiromel from Turkey is about the same as Aventis Cynomel and classed as pretty weak. I have also read about body builders which is not a good advert is it, especially as probably none of them have a thyroid disorder like ourselves. Could I ask how you are are getting on with Tiromel, and how much you take a day. Would be gratefuf for any feedback.

Many thanks Diane

[helvella Administrator Thyroid UK in reply to marmaris]

Do be aware that if you are referring to the page I know, it is somewhat out of date and I would be wary of it.

For example, they write of Tertroxin in the UK which has not been sold as such for, if I remember right, at least two years. That in itself may not be important, but it does signify lack of maintenance of the page.

Of course, everything else could be spot on and still valid, but caution seems appropriate.

Rod

[Hidden]

Hello, well personally I like them but they are the first ones I had so didn't have anything to compare to. Now I get nhs liothyronine so I tend to chop between the 2 as I have lots of tiromel from before. I find the nhs much weaker I take 2 of those which is 40mcg and I'm much more dopey

I take 1.5 tablets of tiromel as soon as I wake, I don't split the dose which I know most people do... I do find that by 4pm it's definitely sleepy time

When I receive my armour I am going to split the dose and take it twice a day x

Good luck! Let me know how it goes

[jeans in reply to Hidden]

It depends which batch number you have. Before June I didn't have any trouble but since then I only seem to be able to get the batch numbers that have been yellow carded

[helvella Administrator Thyroid UK]

You almost certainly will not get any other product than Mercury Pharma Liothyronine. That is because that is the only product licensed in the UK.

To get any other liothyronine product prescribed on the NHS is extraordinarily difficult and you are pretty unlikely to succeed (though a very few people here do get Pfizer/King Cytomel or Paddock from the USA). Cost is another major issue - with foreign T3 costing many times as much as the already over-priced Mercury Pharma product. That is, possibly many hundreds of pounds for a single prescription.

Rod

[belwom in reply to helvella]

hi - liothyronine sodium T3 by Uni-Pharma recently cost me 3 euros for 3 25 mcg boxes of 30 tabs - in Crete - why would it cost hundreds of pounds per prescription in the UK?

[helvella Administrator Thyroid UK in reply to belwom]

It costs a bit over £50 per 28 tablet pack of Mercury Pharma Liothyronine (NHS costs). A lot. Too much. But not quite as bad as you suggest.

The ones that do cost "hundreds" are USA products such as Pfizer/King Cytomel and Paddock. This is because they are special imports which have a lot of extra overheads. No doubt including a healthy profit margin for someone, somewhere.

The only real reason I can see for this is that no other pharmaceutical company has thought it worth applying for a license for their product in the UK. However, there may be an element of "we make very little on levothyroxine, so we will load the price of liothyronine". Maybe, taken in total, the cost to the NHS for thyroid hormone medicines is acceptable. But when such prices affect decisions on treatment then patients can and do lose out.

Rod

[puncturedbicycle in reply to helvella]

My gp has just made this very point to me: They kept my script (requested by endo) at the surgery for a week passing through the hands of all the gps and no one would sign it, so my gp rang me and told me if he prescribes t3 for me it will cost over £60 per month plus the extra cost of the testing (which last I heard costs an extra £13 per test), so he is only willing to prescribe it for two months until I next see my endo at which time he will review. He claims there is no evidence that t3 adds any health-giving value and my weight loss and increase in energy does not move him.

This is not an acceptable state of affairs for me. There is a lead time of up to six weeks on the t3 I order myself so if he suddenly refuses to prescribe once my current script is finished I'll be out of luck. I've gone and ordered my t3 from the usual place so he can't hold this over my head.

[ging in reply to belwom]

Crazy eh?!?

[Hidden]

All my batches are 81171 and they are all mercury pharma and I hate the levothyroxine from mercury pharma! But as someone said there is only one UK manufacturer of t3 so it's that or nothing on the nhs x

I have tiromel which I said already and I also have some from Germany called thybon henning which are also ok

[puncturedbicycle]

I had two months of feeling great on 25mcg Cynomel I'd obtained myself. I eventually went a little hyper and about a month later began to feel hypo but I think I just needed a little tweaking. By then my gp had agreed to prescribe (this was before he changed his mind!) so I let it run out and got a MP t3 script and now I seem to have lots of hypo AND hyper symptoms, incl racing heart. I can't seem to take it in even the tiniest quantities without it making my heart gallop, so I'm not taking my full dose, which I imagine will make me more hypo than ever.

[jeans in reply to puncturedbicycle]

I'm having the same problem of racing heart pulse of 110 it's a bit scary but I've persevered and it doesn't happen as often now.

[puncturedbicycle in reply to jeans]

Yes, gives me the shakes! But I know I also can get racy when I'm hypo, which I could be since I can't seem to take the full dose without my heart pounding, so I must persevere like you. x

[moatie]

hello yes - gone really hypo on batch 81377 - my gp has kindly offered to reduce my dose so I can feel worse.

Started on new batch and I'm sooooooo much better.