My new endocrinologist has just prescribed T3. ... - Thyroid UK

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My new endocrinologist has just prescribed T3. At 5mcg 1xdaily as a starting dose on a trail basis.

W3ndy2159 profile image
18 Replies

Yeah I'm thrilled to be given T3 regardless of low starting dose and being a trial.

i went to collect prescription yesterday and my own GP has given me 20mcg tablets and told me to take half a tablet daily. His reason being...5 mcg tablets are unlicensed and he can only get 20mcgs. Is this right?

Also should I cut these minute tablets into 4 instead of 2? So I will be taking 5mcg as endo prescribed or listen to GP and take 10mcgs?

Are 5mcg tabs really unlicensed or is GP being awkward?

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18 Replies
PinkNinja profile image
PinkNinja

I think your GP might be right but I will have to check. They do work out far more expensive though. He can prescribe them, even if they are unlicensed. Your pharmacist should know if they are licensed.

You might find it difficult to split the tablets into 4 but you should be ok with 10mcg as a starting dose unless you have other underlying medical problems that mean you should start with 5mcg.

Totoro profile image
Totoro in reply toPinkNinja

I thought that one brand of 5mcg was licensed in this country but I checked with the MHRA and they said no, only the 20mcg tablet that we get in the UK is licensed.

The licensing in this country is somewhat ridiculous. I wonder how much money the NHS would save if the testing and licensing was EU based. Or even if it was just "if this manufacturer has been ok for this drug for 10 years in another EU country we can use it in the UK".

Totoro x

PinkNinja profile image
PinkNinja in reply toTotoro

liothyronine has been used in this country for years and used to be a lot cheaper, even as recently as 5 years ago. The fact that so many people were told they can't have it any more seems to have pushed up prices, but that might be coincidence.

I think another factor wit licensing is that there is no demand in this country so manufacturers just aren't applying for licenses. It's a vicious circle :(

It does seem a bit daft doesn't it...

helvella profile image
helvellaAdministrator in reply toPinkNinja

The price seemed to rocket when it was changed from branded Tertroxin to generic Liothyronine. Though the exact same product in every way, I suspect the change was made to exploit some loophole in the pricing controls. Maybe they had some limit on the price (or increase in price) they could get for Tertroxin simply because it was a branded product? Whereas the (theoretically) competitively marketed generic Liothyronine escapes that limit?

I do not know but it seems very likely that there was a specific reason for that change and that would be to the benefit of the company not the NHS or us.

Rod

helvella profile image
helvellaAdministrator in reply toTotoro

Trouble is that if no-one applies for a licence then the MHRA do not issue one.

Unless and until an importer/distributor/manufacturer puts in for a licence no more Liothyronine products will be licensed. So far as I understand, only a dire emergency situation could get round this.

Rod

W3ndy2159 profile image
W3ndy2159 in reply toPinkNinja

Thanks Carolyn for speedy response. I don't have any medically problems beyond the usually hypo stuff so grateful to know 10mg won't do any harm. Day one today so very conscious of how I'm feeling. Thanks again ??

Totoro profile image
Totoro

Are you taking any T4 at the moment? Or are you reducing any T4 to start T3?

If you're not going from T4 then:

5mcg is a very small dose. The equivalent amount of T4 would be about 20mcg (opinions say the equivalent amount of T3 to T4 is 1 to 3, 1 to 4 or 1 to 5 depending different people. I've taken the middle one here).

The normal starting dose for T4 is 50mcg. In the elderly or those with any heart condition it's 25mcg. You're not old enough to be elderly but do you have any heart problems?

So 5mcg is the smallest you could take and 10mcg is also used as a starting dose. You can try splitting a 20mcg down to 4 but it's hard, almost impossible, you just get dust. I sometimes nibbled it instead of cutting it! I would choose whichever dose you feel most comfortable with. You could try 5mcg but it may not make much difference as it's such a small dose. You could always take 5mcg then go up to 10mcg if you feel comfortable with it.

I take T3 only and I have a mixture of 20mcg and 5mcg pills. The 5mcg pills are unlicensed in this country and I get them as a "special order". All that means is that the doctor gives me a prescription for them and the pharmacy gets them in for me in a day or two. For me they come from the US, where they are licensed (nothing dodgy about them).

All the best and I hope that T3 works well for you,

Totoro x

W3ndy2159 profile image
W3ndy2159 in reply toTotoro

Thanks totoro great info and bless you for saying I'm not elderly :-) definitely feel it just lately!!

Yes I'm on T4 in addition to this new script of 5mcg T3. I Was on 150mcg Levo now reduced to 125 by endo. GP says to stay on 125mcg despite him saying 10mcg T3. He doesn't want me to become too hypo as he doesn't believe T3 works!

I feel under medicated with severe hypo symptoms at present so will stick with 125mcg levo and 5mcg T3 for a couple of days to see how I feel then increase T3 to 10mcg as GP suggests. (I've already split 3 T3's into 4 so will use them first)

Thanks again for help :-)

helvella profile image
helvellaAdministrator

The main Thyroid UK site has details of ALL UK licensed and some non-UK thyroid hormone medicines:

thyroiduk.org.uk/tuk/treatm...

That page is updated whenever there is any known change.

Other information readily available here:

medicines.org.uk/emc/

Rod

W3ndy2159 profile image
W3ndy2159 in reply tohelvella

Thanks rod

tegz profile image
tegz

Anyone using a pill splitter on these 20ug's? {I use one for other meds]

I don't use the T3 drug -but if it's powdery it's a bit easier to split.

If coated type they can go all over when small to start with -and shatter.

I would love it for people to work round this pill generic/license fit up - it happened in the US with a med I take which is still available here in UK- as a generic.

jjlily profile image
jjlily

Have you tried using scissors instead of a pill cutter.Someone recommended it either on here or TPA and it does work!!

I was given 20 mcg of T3 to be split in two doses.I started off on 5 and worked slowly up to the 20.

Jill

jill258 profile image
jill258

Hi I get 5mcg t.3 from my local chemist on the NHS prescribed by Endo. They are a special order for the chemist though, but not unlicensed.

W3ndy2159 profile image
W3ndy2159 in reply tojill258

Thanks Jill my surgery has its own dispensing dept as we are a small village practise so maybe they are keeping costs down!

Thank you reply :-)

Joyia profile image
Joyia

Have just started a trial of 10mcg T3 to go with 100mcg T4, have been on this dose for a week now. First two days I had a muzzy head and a very small bout of palpitations but this seems to have cleared I am pleased to say. Cannot say I feel any different at the moment but it is early days, I am hoping my joint pains will ease given time, we shall see. My Chemist could only source 20mcg tablets which I cut in half with a pill cutter which has worked for me, I cut the whole month's supply all at once as this saves time in the mornings.

Good luck and keep us posted, lets hope we both see an improvement with the added T3.

W3ndy2159 profile image
W3ndy2159 in reply toJoyia

Thank you joyia maybe we could PM each other to compare our journey with T3? I too am hoping T3 will help with joint/muscle aches and pains! Especially my hands. :-) did endo prescribe 10mcg straight away? Good luck - hope it works for us both :-) x

zizi profile image
zizi in reply toW3ndy2159

Hi W3ndy2159

Glad you have managed to get T3. I really hope it helps you. I started on T3 about 4 weeks ago combining it with Erfa. My endo suggested this route first although she said that eventually I may end up on T3 only. I started on 20mcg daily with 1.5 Erfa and all was well for the first two weeks. Although I hadn't been told how to take T3 I knew that splitting the dose would be best as with Erfa. I was taking 10mcg twice daily. The 20mcg tablets split really easy with a pill cutter and I have also cut them into quarters - 5mcg really easy, much easier than the more crumbly Erfa.

Unfortunately, in the last two weeks I have experienced real problems with my hands and fingers (something I have not had before) and aching muscles all over and having just read the Stop The Thyroid Madness website instructions on taking T3 (worth reading) I have decided to come off both meds for 7 days in order to calm things down and then start again after that date. I think that going straight on 20mcg as advised by the endo and GP was just too much for me. I had found on Erfa only that just to increase by quarter grain each time was difficult and it took me months to gradually increase dosages up to 2.5 grains. Likewise with the T3. I find that 5mcg of T3 for me is really strong and so I think it is going to be slowly, slowly again.

Just a thought - Joyia said that she cuts a month's supply at once which obviously really works for her and to be honest does make life easier. However, no matter how hard one tries to cut pills accurately there will always be one bit larger, albeit slightly. Since I am very sensitive to this medication, as with Erfa, I was advised to take both parts of the same pill on the same day or one following the other. At least then you know that if you are due to take 20mcg a day then you have definitely taken 2 x 10mcg and not slightly over or under, if you have a whole bottle of half cut pills. Am I making sense? Anyway hope this may be of help.

:)

W3ndy2159 profile image
W3ndy2159 in reply tozizi

Thanks zizi :-) I've got STTM book but not started to read it yet but will look for the bit about splitting and taking T3. Thanks for that. :-)

I understand what you are saying about splitting too many tablets at once and perhaps not getting the right dose daily if too many are split at once. I have split 3 already and thought about this myself. So good to see I'm not being silly!!!!

Sorry to hear you are not feeling too good just now after initially having no detrimental effects. Hope you manage to get yourself sorted and back on the road to recovery. :-)

My endo prescribed 5mcg daily but my GP has said to take 10mcg. I have heard that some people have problems taking T3. So thought I would only take 5mcg daily for a few days/weeks to see how I go then increase to 10. Like you I think slowly slowly is the safe option if I'm not to react badly. After all I've been 12yrs on T4 only so adding T3 slowly seems sensible. Why hurry if it might make me ill?

Thanks again for reply :-)

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