Eltroxin Supply Problems: I've been on... - Thyroid UK

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Eltroxin Supply Problems

hlinbaker profile image
13 Replies

I've been on Levothyroxine since January, on such a miniscule dose, it's hardly worth it - I feel absolutely poo and finally convinced the Endo to increase the dose. She did reluctantly 'up' my dose to 100mcg.

On the advice of my mother, I asked to try the branded thyroxine rather than the generic to see if there was any difference. My GP obliged in writing a prescription for Eltroxin.

The pharmacist tells me that there has been a supply problem since May and he is unable to get Eltroxin. Has anyone else had this problem?

He questioned why I wanted Eltroxin specifically since they were 'all the same'. He dismissed my explanation that some people don't get on with the generics citing the 'yellow card system' - ie. there is no evidence of this and anything read on the internet is purely anecdotal with no base in fact!

I left with a prescription for generic levothyroxine but was told that I would not get Eltroxin next time either due to supply problem so I must go back to my GP and have my repeat prescription reverted back to 'levothyroxine' instead of 'Eltroxin' otherwise they wouldn't be able to prescribe me anything.

Oh and my Endo ticked the 'discharged' box at my last visit so I guess I'm on my own now despite no improvement in my symptoms. She says she's done all the tests required and there's nothing more she can do.

I feel lost and ill, disbelieved and frankly my energy levels are so very low - this is the first time I've been able to come here and type for ages.

Does anyone else just feel invisible? How many of us are shut away and suffering unnoticed

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hlinbaker
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13 Replies
Mia1057 profile image
Mia1057

Yes I think you have summed up how a lot of us feel at some point with this awful disease

RedApple profile image
RedAppleAdministrator

If you type Eltroxin into the search box on the top right (on green bar), you will see that the Eltroxin supply problem has been a frequent topic of conversation here.

As yet, there is no formal word from the manufacturers as to whether or not this issue has been resolved. That said, we have had one member here confirm that she has been dispensed with new stock of Eltroxin 100mcg tablets.

RedApple profile image
RedAppleAdministrator in reply to RedApple

I've just noticed that in the column on the right there's a heading 'More Like This'. You may need to scroll down the page to see it.

It would appear to display links to previous conversations about the subject of the P or Q you are currently viewing. e.g. in this case, it has more conversations about Eltroxin / Mercury Pharma.

Might save you using the search box :)

hlinbaker profile image
hlinbaker in reply to RedApple

Sorry, I should have done that first.

RedApple profile image
RedAppleAdministrator

With regard to your question: Does anyone else just feel invisible? How many of us are shut away and suffering unnoticed?

Yes indeed, it's a sad fact that there are many, many people in this situation. However, it doesn't just pertain to thyroid problems. The reality is that, if you have any health condition that doesn't fit into the pre-defined pigeon holes that medics have created and have a successful 'treatment recipe' for, you will be likely to find yourself in this situation. :'(

hlinbaker profile image
hlinbaker in reply to RedApple

I'm aware it doesn't just pertain to thyroid problems. Sorry if I was sounding sorry for myself!

valjo18 profile image
valjo18

You GP sounds ok (he prescribed what you asked for, even though you cant get it) so why not go back and discuss your problems with him. He'll probably get further tests done for you and take it from there, or maybe refer you to a different Endo, I understand that we are all entitled to a second specialist opinion. From what you're saying you may have issues with B12, ferritin, etc. as well but this would show with further blood tests

Good luck

hlinbaker profile image
hlinbaker in reply to valjo18

I'll ask the GP to refer me to a different endo. It's got to the point where I'm going to have to borrow money to see someone privately. It feels I'm on a road to nowhere. They've done 'all the tests' and say they're 'normal' except deficient Vit D levels

My mother is insisting that there is a family problem with 'intrinsic factor' so I'm going to investigate that. Something about the ability to absorb supplements & medication (I don't know) also a B12 deficiency. She says I need to ask for B12 shots instead of the Jarrows B12 I've been taking, as I'm probably not absorbing it

valjo18 profile image
valjo18 in reply to hlinbaker

Hi, thanks for response. I don't know anything about 'intrinsic factor' because I'm hypo following RAI some 10 years ago. As I understand it, if you supplement B12 it needs to be methylcobalamin ( I think that's how it's spelt) taken sublingually, but I'm no expert! I think it would be better to get any further tests out of the way before supplementing because it may muddy the waters. I know l how it feels to try to convey to a doctor that you dont feel well and that if you are depressed it's because you don't feel well and not the other way round. Heads and brick walls spring to mind! Personally I cant remember when I last felt really well and my biggest regret is allowing the Endo to advise me to have the RAI done in the first place.

I wish you well, and hope your GP refers you to a more helpful Endo, although I think that the majority of the NHS Endos only seem to be interested in Diabetes, probably because it's more straightforward than Thyroid problems and easier to treat and get results. To see the Endo at my local hospital you have to go to the Diabetes Clinic! That says it all.

Val

hlinbaker profile image
hlinbaker in reply to valjo18

Thanks for responding. Yes, you're right - my Endo was more interested in Diabetes and wanted me to take Metformin. I don't have diabetes! She says it will help with weight loss?!

lynmynott profile image
lynmynottPartnerThyroid UK

In respect of the non availability of Eltroxin I am in correspondence with a lady who has cc'd me into her correspondence with them. I'm hoping we will be able to get more information soon. It's very confusing because Goldshield were taken over by MercuryPharma and then on 15 March 2013, the Amdipharm and Mercury Pharma groups of companies (including their Antigen, Anpharm, Forley and Goldshield affiliates) merged to create the new international speciality medicines company, Amdipharm Mercury. It seems that this is the reason for the manufacturing problems with Eltroxin. If I get some more info, I'll let everyone know.

hlinbaker profile image
hlinbaker in reply to lynmynott

Thanks so much Lyn, this information is really helpful <3

KLR22 profile image
KLR22

I've been in touch with Mercury Pharma and they say that there is still a problem with Eltroxin.

With regard to feeling invisible and ignored, I've been to see my doctor today and, although she's been good and done as I asked, I feel that she's sceptical about my health problems and doesn't really get it at all. I came out feeling quite despondent, despite her agreeing to give me some extra thyroxine and carry out blood tests for B12, D and ferritin.

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