Feeling great on Liothyronine, but GP has changed prescription

[gillykins2]

Hello everyone,

I'm new to the site, but thought my experience might be helpful, and you might be able to advise me too.

I had a goitre removed in 1996. I became too ill to work. I've tried Levothyroxin and Armour Thyroid with limited results. The Armour was better, but I got very hot. In October 2011 my new endo. suggested Liothyronine. I had to agree to take it very slowly, starting on 20mcg, and increasing annually, "to allow the medication to work on the cellular level." Eventually, I found taking the Liothyronine without food suited me best. I take 50mcg , crushed, with water, at about 3am. This summer I started clearing the garden; I can now work up to 5 hours a day without ill effect. I feel GREAT!

However, my GP practise has just told me they will no longer be prescribing Liothyronine, as it has been given a RED DRUG status where I live in Somerset. They wrote "This should be of no concern to you as consistently there has never been any evidence that it (Liothyronine) is any more beneficial than Levothyroxine."

Liothyronine from my local pharmacy (supplied by Mercury Pharma) would cost approx. £4,000 a year. I've rung round the pharmacies I know of that supply Armour, but their price is comparable. Can anyone recommend an online company which would be more reasonably priced, but of the same quality?

Also, any suggestions what I can do to get my prescription re-instated?

Thanks in anticipation.

[rosetrees]

You might feel that a nice holiday in Greece is in order. See this thread healthunlocked.com/thyroidu...

[gillykins2]

Thanks rosetrees, a holiday would be lovely.

Have been comparing T3 prices. Maybe my maths is wrong, but £4000 a year in UK compared with £109 from Mexico! If I'm right, that is unspeakably immoral!

[rosetrees in reply to gillykins2]

gilly. In my opinion, the cost paid for medicines is the biggest single scandal within the NHS. It's the only large organisation that I know of that drives prices up during the procurements process not down.

But think who runs all those conferences, seminars and training sessions that doctors attend. Is it the NHS or are they sponsored?

[gabkad in reply to gillykins2]

It is immoral. There is no logical reason for a why an old drug should be this expensive in certain countries and no more expensive than T4 in others.

[Clutter]

Gillykins, I'd ask the GP or practice manager to put their reason for stopping your Liothyronine in writing and then write to your CCG appealing the decision and enclosing the letter from your GP. Copy your MP on your letter.

[gillykins2 in reply to Clutter]

Many thanks Clutter, I'm in such a panic I can't think clearly.

Kind regards,

Gill

[gillykins2]

Thanks for all your comments, I feel much less alone and helpless since finding this site.

[Pookie50]

Hi

I too live in Somerset and have received a letter today from my GP saying they are no longer able to issue prescriptions for T3 (Liothyronine) 'as this drug is not recommended and should only be consultant prescribed'. They have been prescribing this for me for the past 7 years and I have enjoyed feeling really well during that time.

I was originally on Levothyroxine only for many years and felt dreadful and when a private Endo put me on T3 it was like someone had thrown a switch and many of my symptoms improved dramatically. So they now want to stop my T3 and increase my Levothyroxine to see how I go and if this doesn't work I could be referred to an endo who might be prepared to continue treatment.

I am furious about this situation, but feel completely helpless. I can't afford to go to a private endo these days so I expect my only option will be to buy T3 from Mexico.

If you manage to get your T3 reinstated I would be interested to know.

Best of luck.

[saloplass in reply to Pookie50]

This depends where about you are in Somerset maybe? But, the person I know is still the one on the Somerset CCG who deals with this is a Shaun Green [e]?. I had to involve him the first time I was refused T3 via my GP and not via my consultant at hospital. I wrote to him, to my MP Tessa Munt, to the Daily Mail, The Telegraph and several other people. I was finally allowed to have this drug from my GP who I might add was completely against me having it. Within two hours of taking it, I felt like me again, I have stayed with the same brilliant endocrinologist a Dr Padrag Singhal at Weston Super Mare General - ask to see him. Or even see him privately at Waterside which is also at WSM. He gave me my life back, simple as that. I still see him and it is only over the last 6-9 months he has been able to establish stability to my thyroid gland. Without hesitation if you get no joy, then get a private appointment with him if all else fails. Google WSM and Waterside Suite. You can by all means mention my name, Mary Kelly.

[gillykins2 in reply to saloplass]

Mary,

Thank you so much for your reply, so helpful.

I live in Cheddar, so Weston is my local Hospital. My endo. is in Taunton (recommended to me by my GP because she prescribed T3). She is very supportive, but now Taunton have withdrawn T3 prescriptions, her hands are tied.

I have been taking US Liothyronine, but haven't been well on it. The filler is completely different to the UK Goldshield Lio., so I think I must have some intolerance.

The positive thing that's come out of all this is that I've found this forum, and learnt so much about thyroid disease and adrenal insufficiency. I'm a different person to the one who wrote that post 4 months ago.

Many thanks, I'll contact Dr Singhal, if he recommends T3 also, I'll be in a stronger position with the CCG.

[saloplass in reply to gillykins2]

I cannot understand why an Endocrinologist would remove T3 from you, it is supposed to be hospitals that are to prescribe it. Musgrove I am presuming? This sounds a bit political if they do not want to spend on patients. It is all the one NHS. The more I hear and try to find out the less sense it makes if it is all about money. The only T3 that the NHS use is Mercury - a few months ago there was a problem getting hold of this, perhaps lover than a few months. I thought it was my pharmacist being a pain, and another small chemist got hold of it for me no problem. The chap to speak to at CCG (based in Yeovil) is Shaun Greene [e]??

You might do well to ring him first and bluntly ask him why it has been removed. As yet I still have not received a letter removing mine. To my mind removing a drug that helps health so much has to leave the 'remover' open to be sued. Whether that be your endo in Taunton, your GP or the CCG. OK it has got expensive, but in comparison to what? There cannot be that many patients in Somerset that are taking this drug via their GPs as so few GPs seem to understand about the drug and the difference it can make to a person's health and wellbeing. Please let me know how you get on. [e-mail] may be a good idea to contact me on.

[Hidden in reply to saloplass]

Dear Saloplass,

Can you private message me about this endo. I am in Bristol but am going to ask my GP if a second opinion is possible as endo I have seen not very helpful. Do you have blood test results that impress endos. Mine are jsut about in range and GP/ current endo wont consider treating me. I an worried that I have a pituitary problem that is not being picked up becasue of current endos adherance to blood tests and reluctance to diagnose anything unusual. Do you think Dr Singhal would be good for second opinion

[gillykins2]

Hi Pookie50,

I'm so sorry to read you are having this problem too. I'll gladly let you know if I get my prescription reinstated. I've bought T3 from the US with a private prescription, at a 1/4 of the UK price, but not as cheap as Mexico (I don't have the confidence at the moment, to buy medication online). I'll be taking my 1st. dose tonight.

The CCG decision knocked me sideways, but oddly has also given me strength. It forced me to read up to date information about thyroid disease, and now that I'm clearer headed, I can process it more easily (previously I'd tried to research thyroid disease, but found the madness and confusion surrounding it very distressing). Now that I have more knowledge, I feel empowered. I feel able to talk with my GP and endo. on an equal footing, rather than seeing them as authority figures who know best.

If I can show Somerset CCG and my GP that I'm unable to fully convert T4 to T3, I might be able to have my prescription reinstated. But I've read the brain needs T4, and I still have some brain fog, so maybe just taking T3 isn't enough anyway. So I'm also looking at possible causes, to see if I can rectify the problem. It would be a lot cheaper if I could!

I've already found out that selenium and zinc are essential for conversion, and blood tests show I was low on both when taking T4. I've also been in contact with the distributers of Actavis Levo., one of the brands I used to take. One of my symptoms was painful joints, which they say is a rare allergic reaction. So, I'm going to increase my supplements, and try another brand in spring.

Do you know why you feel so much better on T3?

I've found Izabella Wentz's book, "Hashimoto's Thyroiditis: Lifestyle Interventions for Finding and Treating the Root Cause" invaluable. I had a goitre, so no antibodies, but a lot of the advice still seems relevant.

Best of luck buying T3,

Gill

[Swantaff]

I can't advice but I am going through the same, I have just posted a simular thread.

It is so frustrating!!