WRITE TO YOUR MP NOW (and copy to secretary of state) REGARDING LIOTHYRONINE (T3) SUPPLY PROBLEMS

[nobodysdriving]

I urge you all to take action now.

This problem is 'long term' and as such we have to act now before we become ill!

I have managed to source 4 weeks of liothyronine but then will run out. My GP is declining to help in any way, my endocrinologist may not help me (waiting to hear).

Pharmacist hands are tied unless GP/PCT agree to pay for more expensive alternative or prescribe unlicensed T3 from abroad.

All I know is that if I don't act now then in 4 weeks time I may not have any more medication and it will be TOO LATE.

Pharmacists need time to source products from abroad so action is needed now. I have emailed my local MP and copied Jeremy Hunt into it, here is what I have written:

Dear Mr ----------,

I am writing to you as a resident in ----------- and a devoted worker and a patient in need.

My name is ---------,

I am a --yr old single mother and a ----------.

I work at ----------------in London and have been a ------------ for over 11 years.

I have lived in ------------ for a long time.

I was last year diagnosed with hypothyroidism.

It soon became apparent that I could not tolerate levothyroxine and that I needed 'T3' (liothyronine) only treatment to get well.

I got well on Liothyronine and was able to get back to a full/satisfying/rewarding life and carry on doing my job.

The medication I am on is unique in many ways, but also is 'quick acting' (it enters and leaves the body fairly quickly: ie couple of days).

Also for some complicated reason, there is ONLY ONE provider for this medication to the NHS, this is Mercury Pharma.

there is ONLY ONE type of liothyronine licensed in the UK by the MHRA. this is 'Liothyronine 20mcg' by Mercury Pharma.

If I run out of this medication I will deteriorate EXTREMELY quickly and within 3 days I may require hospital admission as on the second day of no medication I already cannot get out of bed as I am in severe pain all over my body.

When I went to get my repeat prescription from the pharmacy 2 weeks ago it transpired that Mercury Pharma has a 'production problem' and liothyronine will be totally out of stock for a minimum of 2 months but Mercury Pharma predicts this will be a LONG TERM problem.

My pharmacist was unable to source any liothyronine.

I quickly alerted my GP and my endocrinologist at ----------------------hospital.

Between them I sourced enough Liothyronine to last me for the next four weeks.

But now there is NO MORE to be found.

I have contacted the MHRA and they told me the pharmacist has to work in conjunction with the GP and between them two they MUST source something for me.

The pharmacist has found an alternative which can be imported but it is ten times more expensive than the one I am currently on, and other sources are unlicensed (they are perfectly safe medications, used extensively in the USA but just not licensed over here).

The GP refuses to prescribe due to the cost or 'unlicensed status' and has put all responsability onto my endocrinologist.

My endocrinologist already told me that the only liothyronine he will be able to prescribe is the one which is licensed (ie the Mercury Pharma one), however if none can be found then what do we do?

I am SURE my local PCT and GP have a duty of care and surely they cannot decline to prescribe the more expensive version that the pharmacist can source for me. After all this is only needed during this time of need then eventually I will go back onto the 'cheaper version'.

Also unlicensed medication CAN be prescribed in the UK, the doctor prescribing has to take responsability for its prescribig of course, but of course with no medication I am SERIOUSLY worse off than with it so surely the GP in this case can prescribe? after all it is the SAME medication/same ingredients.

After all with no medication I will get too ill to look after myself.

I am acting now, 4 weeks before I run out as I do not want my son to act on my behalf when I get admitted into hospital 4 weeks from now. Besides as he is a minor he cannot act fully and legally on my behalf and he is the ONLY family I have. I have no husband, no brothers or sisters or parents.

The unlicensed liothyronine the pharmacist can source takes time to import, so action is NEEDED NOW or I will not get it in time for when I run out.

Mercury Pharma has already told me there will be NONE until the very least end of June and most certainly later.

PLEASE I BEG YOU/URGE you to contact my PCT and my GP and tell them they have to act now.

I am spending every minute of the day worrying about this, please help me.

Many thanks in advance

[Moggie]

I really hope you and everyone else on T3 get somewhere with this - it must be very worrying times for you all.

Will you go back to buying it privately if all else fails?

Moggie x

[nobodysdriving in reply to Moggie]

No, I 'demand' the NHS helps me, it is 'their duty of care' to look after me, they are prescribing T3 and as such have a duty of care.

[Kezzerb]

Yes bombard them all but not just about T3 situation but about the whole deal. The NHS is being privatised we will all have to pay for our own treatment soon. T3 can be sourced far cheaper than what the NHS is charged. The whole deal is recognising how thyroid sufferers are treated and how some sufferers are not converting and are only offered T4 and how the test is not giving out accurate results and so sufferers are getting adrenal fatigue. I wrote to PSNC and this is the response I got back.

Dear ------

I see that a similar ticket has already been open and responded to in which the following advice was provided:

Thank you for your email. PSNC is not responsible for decisions on licencing of medicines, nor do we determine prices. The licencing of medicines falls under the remit of MHRA; whom I notice you have already contacted. Prices are set by manufacturers and wholesalers under arrangements controlled by the Department of Health, which also determines the reimbursement price paid to pharmacies who dispense the medicine.

PSNC represents community pharmacy owners who provide NHS services; your enquiry is beyond our remit so I am afraid we are unable to take your enquiry any further.

Kind regards

---------------------

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Post edited by Admin to maintain confidentiality of individuals

[Kezzerb]

I truly understand your worry I am in the same position as you are. Although I do not feel as desperate as you as I have purchased and sent for three hundred tabs from Mexico it rediculous that the cost of them is so much cheaper than the ones the NHS pay for. Yes we should not have to do this. Mercury Pharma should not of allowed us to be put in this position. Hugs Kerry

Post Edited by Admin in line with our Guidelines

[bellk in reply to Kezzerb]

I saw a Canadian website offering it but prescription needed, how much was the Mexican stuff?

I really don't want to go back to Thyroxine and a brain full of cotton wool, especially as I have narcolepsy too.

[Numberone1]

On the advice of Dr P I get mine from a different source. If anyone wants to know where for emergency cases, then please private message me.

[helvella Administrator Thyroid UK]

What? Again!!!

Rod

[vajra]

I'm wondering what in heaven is going on. Wasn't it the other mainstream brand of T3 that ran into supply problems last year? (over here anyway)

Wonder what's going on, and if it's confined to just Mercury or if it's caused by something more fundamental that's likely to impact the availability of other brands?

ian

[Margo]

As ever Pettals is on the case. Well done Pettals!

[nobodysdriving]

excellent Pettals, I also copied J Hunt into it

[meki]

Sadly I think this is what the government wants, (us all to die) It would help the budget cuts no end