Follow Up Over My Recent Complaint Relating to T3

[JOLLYDOLLY]

Hi,

Some of you might remember, that I wrote a post back in July about my referral to see a Endo for continuation of prescriptions for T3 Lithyronine. Needless to say, it did not go well and I ended up making a complaint to the PALS department. To be fair to them, they have followed it up, but it is a white wash. This is the answer I got about T3 and why it is not being prescribed in future. We all know it works, although they say it doesn't. The real reason, is funding and how expensive it is to the NHS at this present time.

I will type it as it is quoted word for word.

The paragraph is headed Thyroid UK (I had mentioned the medical evidence which supported the T3 Lithyronine, in my complaint)

"The subject of T3 administration was debated in the Annual British Endocrine Society Conference in November 2015. Clinical evidence was presented for and against T3 treatment by leading thyroid endocrinologists.

The vast majority of endocrinologists in the UK do not prescribe T3 (we already know that and why). Thyroid UK and other patient groups are lobbying the various bodies to prescribe T3 but until the Endocrine Societies endorse this medication, then it will remain a drug most endocrinologists do not prescribe within the NHS."

To me, it seems that until they take their heads out of the sand and stop this stubborn behaviour and mind set, the T3 drug will remain expensive because of only one pharmaceutical company supplying it to the NHS, but if they were to endorse it, then I am guessing it would be cheaper and more assessable via other pharmaceutical companies.

The end result is that the Consultant, denied everything I had complained about but no longer will see me as a T3 referral patient and any other new referrals seeking T3 medication/prescriptions. She does not believe it works, that it is dangerous and will therefore not prescribe it. I am therefore requested to see another consultant at my next appointment or be referred back to my GP to seek other means.

Her words, "To look at other options and explore these with me which she deems appropriate in my treatment. There isn't any other option, other than T4 only. I was born with congenital hypothyroidism, I have been on T4 since I was five weeks old. I was only prescribed T3 as the T4 was not adequate enough for my needs. It was a endo that prescribed it in the first place, over ten years ago due to the mismanagement of my dose by the GP. My problems only started when I was 32 because of the wonderful GP, before then, I had no problems.

Anyway, bottom line, I have managed to secure three months supply and then I will have to finance it myself. I refuse to come off it.

Just thought I would update you. I am looking forward to hearing my new results as she expected me to reduce my T3 to 10 mcg. I have not done so, but reduced my T4 as they were over prescribed in the ranges given. The T3 was in the middle of the range, so to me that was right.

Watch this space.

Take care and keep lobbying for our rights for this medication

[JOLLYDOLLY]

Thank eljii

I will keep these documents as evidence and future reference. I have decided after talking with the hubs, that I will not make another appointment with a Endo at the hospital, as I think it will be fruitless and anxious for me. They are not going to listen and to be quite honest, I am quite happy to go with the flow and see how many prescriptions I can get out of my current GP, before I have to finance it myself.

I will continue to take my normal dose, even though they think I take 10 mcg presently. I will then look forward to taking off the smug look on their faces, when they finally tell me that I do not need T3 because the results indicate that I am ok on T4 only and I can tell them, nothing has changed except that I have lowered the T4 only. Ha ha

Take care

[JOLLYDOLLY]

I wish it was the case in the UK. According to the information I have, the NHS gets charged £9.22 per tablet, so if you are on 28 over a four week period, it gets expensive, but they see the pound sign over need and quality of life, in the UK it would appear.

[JOLLYDOLLY]

I am not sure of the price in other countries, I have never really converted it properly, but I know it is a lot cheaper than the UK.

[eghjm100]

I have been through exactly the same process but because I bombarded the PALS CCG with complaints and question after question they finally spoke to my gp who has agreed until such time as the CCG issue the directive for gps not to prescribe T3 he will continue prescribing for me not sure how long that will be ! also be careful stocking up as T3 does not always have as longer shelf life as other meds. I do think that the more of us that give up and go self medicating the more the NHS will clap their hands but I know it's tough to keep on fighting for what should be our right, nobody gave us the option to pay NI or not we were told how much to pay in return for NHS healthcare they have failed to keep their end of the deal! and the reason! their failure to administrate the sourcing of a perfectly ordinary and reasonably priced drug. WHY? sorry rant over

[JOLLYDOLLY]

I take you point eghjm100 and I totally agree to be honest with you.

I was initially referred because my GP called me, she was admittedly a little nervous telling me "she was not licensed" anymore to prescribe the T3, so I did challenge her was it over the price and she would not give me a direct answer. All she would do, is refer me to a Endo, as it was a Endo under a different authority, who had prescribed it originally. Unfortunately where I live now, none of the Endo's will prescribe it, I was told the price, but then told that the medication did not work, was dangerous and because it was expensive and I was in a "minority" that the money could be spent else where on different diseases and better causes, which would benefit others. This is one of the reasons I reported her. She has since denied it amongst other things.

The daft thing is, she has told my GP that I have agreed to be weaned off by reducing my dose of 20mcg to 10mcg. (I did not agree) I haven't reduced it, but you would have thought the prescription would be reduced accordingly, but it wasn't. It says take 10mcg daily but given me a full two months prescription for the original dose. So I am saying nothing, until they stop prescribing it and then I will buy it where I can. I refused to be bullied by the NHS, so far I have proved them wrong.

People like us who need help with the T3, should be entitled to it. I have paid my NI all my life and worked hard too. So I refuse to accept that we are in a minority. But at the moment our rants and complaints are falling on deaf ears. The powers that be, need to pull their heads out of the sand and start listening and reading the facts.

Sorry, I am ranting now.

Take care

[JOLLYDOLLY]

According to my health authority, there is only one supplier in the UK and it is classed as a "Red traffic drug" so none of the GP's are "licensed" to prescribe it. I think it is disgraceful. I think that they lie to suit themselves. Fair play to the Professor though if he still prescribes it