i have no choice but to take levo thyroxine - Thyroid UK

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i have no choice but to take levo thyroxine

abongo profile image
20 Replies

After being told that liothyronine T3 IS NO LONGER AVAILABLE until another company decides to make it i am forced to now take thyroxine which on my first attempt at taking it made me very ill. But the thought of suffering the symptoms of hypothyroidism again also scares me so im going to try thyroxine again. feeling rather anxious but what do i do?

Is anyone else doing the same thing? would like to know how you are getting on.

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abongo profile image
abongo
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20 Replies
helvella profile image
helvellaAdministrator

I do not know who told you that, but they were ignorant or at best, ill-informed. Have a look here:

thyroiduk.org.uk/tuk/news.h...

There is a problem but it is temporary.

There have been several blogs here as well. Sorry cannot right this minute give you a link.

Rod

PinkNinja profile image
PinkNinja

As Rod says, they are wrong.

Please go back and ask for a prescription. Many people are finding that they can indeed get their liothyronine prescriptions filled. You shouldn't have to suffer. You should still get the prescription as there will likely be somewhere that has some or can get some soon.

I really hope this isn't someone's attempt to switch you to thyroxine because of cost!

Lily905 profile image
Lily905

Thyroxin is poison to me.

I cant convert T4 to T3

Ive no Thyroid & would prefer to take nothing if I cannot get T3 Liothyoronine.

The side effects I still have from being poisioned with Thyroxine a few years ago have made me regret having my Thyroid / Cancer removed. (I hope Im not offending anyone on here)

My GP knows if I cant get my Liothyoronine. The choice I would make.

abongo profile image
abongo in reply toLily905

Are you still able to get liothyronine?

katemary profile image
katemary in reply toLily905

Hi I had my thyroid removed ten years ago and have been on just T3 ever since but I think my GP is angling to move me to T4 and find your post really alarming. Were you on T3 and then moved to T4? What happened when they tried to move you? I've never heard of being poisoned by T4 but have a lot of friends with underactive thyroids who don't feel great on T4 and one who felt 100% better when she saw an endocrinologist (privately) who prescribed T3 as well as T4. What were the side effects and what happened. I'm hoping the T3 shortage will have been resolved by the time my prescription is due and I'm feeling very ignorant about all of this.

abongo profile image
abongo in reply tokatemary

Only been on T4 for 2 days do not much to report other than I miss my afternoon pill of T3. I've had massive fatigue the last 2 afternoons and just want to go to sleep. My energy levels are usually good in the afternoon. I still have my prescription for T3 so will opt to go back on it as I had no issues at all whilst I've been on it the last 8 years.

abongo profile image
abongo

I do have quite a good relationship with my doc and he said he and the chemist have phoned round everywhere and there isn't any. Should be a temporary but can't say when they will be making them again. It's source that is the shortage apparently. Hope it's doesn't come down to a cost issue.

Lily905 - what were your symptoms when taking thyroxine? I suffered terrible deep dark depression to the point I didn't really know how to function. It was scary. Never felt like that in my life. But because I am more stable now with my condition I pray it will be different this time. Ill keep posting.

in reply toabongo

People are asking their pharmacies to source T3 from abroad.

Loads of blogs on this - start here:

thyroiduk.healthunlocked.co...

Louise

x

helvella profile image
helvellaAdministrator in reply toabongo

Amdipharm Mercury have already said that a batch is in production. Obviously, anything could go wrong, but hopefully it will pass quality control and be going into distribution within a few weeks.

Rod

Schenks profile image
Schenks

Sorry to say this, but I bought mine privately from abroad. And funnily enough, it seems better than the lio in the NHS. Go figure.

SilkyJ profile image
SilkyJ in reply toSchenks

HI Schenks

I SO agree. I find the NHS T3 is less potent and it also makes me ill. There is something in it which does not agree with me.

I think we should all start complaining about this because I have brought it up with my endo and if he doesn't get me a different brand which agrees with me like the Mexican Cynomel, then I will see my MP.

Silky x

Schenks profile image
Schenks in reply toSilkyJ

Yep - the Cynomel is the one. I think it is 25mcg as opposed to 20mcg for a start, but even so, when you are taking halves and quarters, the difference is still noticeable.

vajra profile image
vajra

There's been no issue locally (in Ireland) with supply of the Teoforma Ti-Tre T3 product for example - it's a pretty widely available brand in Europe.

Not sure how licensing and the like may influence the situation, but pharmaceutical distributors should be able to source it fairly easily i suspect....

ian

fiona profile image
fiona

Last week I got my liothyronine prescription. I did the leg work and pho nee round to see who had it in stock. The big boots pharmacy had some, but but a couple of nearby Lloyds didn't. I also got a small supply online. Basically with one mainly prescriptions, I never feel ahead and protected against these things. So rather than going back on on levothyroxine or telling the go about shortages, just get your prescription, and even if it means travelling a bit, see if you can get , but I'd phone first to save wasted journey, I was glad I did that in the end.

juliaheppers profile image
juliaheppers

I got mine from the hospital after phoning all chemists in my area

But you need a hospital prescription

Good luck

Julia x

Hiphypo profile image
Hiphypo

Who told you that? It's wrong, and the issue is with the sourcing of the main ingredient.

If you ask your pharmacist to get on to their wholesaler, they can get it in from abroad.

I've had the last in Edinburgh, I think, but have sourced some Cynomel from Mexico at a very reasonable price.

Lily905 profile image
Lily905

Abongo

I did not have the deep dark depression.

I couldnt function mentally or physically. Ive ended up being long term damaged. If I copied & pasted the full horror details from my DLA claims I will scare people & be removed from here. I was very unlucky.

I'm trying to sort an Import of T3 & then I can post some good news.

janel profile image
janel

I have managed to get some in Edinburgh today only part of my daughters prescription but other chemist has put there tablets aside for me. You have to phone around I sat with a phone book x

Zephyrbear profile image
Zephyrbear

My local Boots (just a small town branch!) got mine for me after I went in there with my prescription and a copy of the advice from nobodysdriving's blog at thyroiduk.healthunlocked.co...

They supplied me within a week! Don't accept 'No' for an answer!!!

bellk profile image
bellk

A friend in Italy is getting me some( Ti tre). Suggest you askwho you know is going on hols to mainland Europe soon and see if they can get local version. And less than £13 for 2 months.

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