Protest letter: cut paste amend send to your heart's content

Protest letter: cut paste amend send to your heart's content

Dear Bleh

I find the NHSCC’s consultation on the efficacy of Liothyronine (T3) disturbing and unfounded. This product, which I source myself from another European country at a negligible cost has been a life saver for me and countless others.

The NHSCC website nhscc.org/latest-news/400m-... claims that whilst Liothyronine is ‘clinically effective’, there are ‘more cost-effective products available’. There is a fundamental lack of understanding in this statement. Whilst Levothyroxine (T4) is similarly used in the treatment of hypothyroidism and associated complaints, T4 does not suit everyone with this condition.

I am one of those people. Were I to remain on T4 I have little doubt that I would be bedridden and unable to contribute to society, additional to having a very poor quality of life. My first line treatment was T4 and as I was unable to regain any sense of wellness from T4, I was compelled to investigate further when my GP told me that T4 was the only treatment for hypothyroid conditions. Through private consultations, private blood tests and alternative sourcing, I have clawed back some of the wellbeing enjoyed prior to my diagnosis and remain functioning and contributing.

Many people are reliant on the NHS to see the longer term benefits of T3. If Levothyroxine does not return good health, without T3 on prescription many longer term problems such as chronic fatigue syndrome or myalgic encephalomyelitis present. May I suggest that these are likely to cause a greater burden on the NHS in the longer term?

Returning to the NHSCC’s web page, the suggestion is that the reason T3 has been selected for this process is cost. A thirty pill packet of 25mcg T3 can be had in some parts of Europe for €1.15. The many suffering from hypothyroid conditions should not suffer further due to the unconscionable price gouging which has befallen this generic medicine. It is surely a matter for government procurement to pursue the manufacturers of this vital medicine. The hypothyroid cohort should not be punished for the incompetence of others, yet this appears to be exactly the NHSCC's proposal.

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19 Replies

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  • The basic point is not that the NHS does not acknowledge that some patients need T3 as well as T4. They acknowledge that. The essential question is, how many? The "gurus" in the NHS say "1-2%" whereas elsewhere in the world (eg the US and in Germany, which I think because of their particular problems with widespread iodine deficiency have made them THE world experts in the complexity of thyroid problems) a sensible estimate is 10-15%. This seemingly innocent disagreement lies at the centre of how the UK is at odds with other's thinking. Somehow the UK has slipped into a shoehorn thought process that "in the noral range therefore all is OK". They've lost sight of the individual and their need for personal treatment and diagnosis.

  • Diogenes, thanks for these figures, very interesting. I often get asked this question when I'm explaining my situation to others.

  • Right on. So if T3 is removed from the list of 'allowable' meds, how will those acknowledged (1-2%) few ever manage to have T3 prescribed - never mind the 15%?

  • Thanks for your response Diogenes and you are correct. They've lost sight of the individual's needs.

  • Great letter, Rapunzel. Isn't it also true to say that the medical community, for reasons beyond unfathomable, actually believe that T3 lacks worth, has no effect, or is dangerous for hypo treatment? I am at a complete loss as to why they insist on measuring the inactive and ignoring the active. Seems utterly insane.

  • Sure it is steviecat but you have to play nice or they just go off in a huff innit tho?

  • Really brilliant letter! Thank you for sharing it.

    As I am quite unwell I'm trying to work out whether I can get involved in contacting my MP, etc. Lovely people like you making it so simple to do it is a real help. x

  • I'm really sorry to hear you're not feeling too good, Silver. Wish I could take you on holiday to Greece with me 😎 🍹

    Lonely planet claims 'Thessaloniki is fuelled by optimism, hedonism and just a dash of chaos.' Yeah baby. My kind of dirty town. Bring it

  • Hehe, sounds perfect!

  • Rapunzel - am sure you will have read Victoria Hislops book about Thessaloniki - OMG the title has disappeared into my - T3 not kicked in yet - brain 😴😴

    Great letter - have a great holiday 😎

    EDIT - The Thread !

  • She wrote a wonderful paean to Greece in the Telegraph a few years back. I doubt I'll find The Thread in the airport bookshops and I have developed a Luddite dislike for ereaders. Certainly pursue this when I'm back home. Thanks Marz xx

  • I think you should find it at the airport - that's where I found mine.

    For more Greek tears do read Eleni - by Nicholas Gage. I have never cried so much.

    Also - Birds without Wings - by Louis de Bernieres. So put me in my place as somone who chose to live here.

  • I will send it Rapunzel.

  • The addition of t3 has changed my life. I couldnt walk for more than 15 mins on t4 only, felt pathetic. Within days of taking t3, I was back to normal. If the nhs takes me off t3, I will buy it privately. Im deeply sorry for those who cant get proper treatment or advise from the nhs. Thanks to you amazing people on this forum for such invaluable advice. Xx

  • Rapunzel, quite brilliant. As Diogenes has said:-

    They've lost sight of the individual and their need for personal treatment and diagnosis.

  • TYSM shaws. I am concerned that this is an itch which we are being made to wait too long to scratch (by TUK). The NHSCC consultation period began on 28th March - just over a month ago. T3 is imperative for so many - many of whom the NHS is unaware of, as we have no alternative but to self medicate. So long as the endo cohort continue to scoff and deride the need some of us have for the active hormone, it is unlikely that this matter will be resolved.

    Doubtless when I have golden wings and can observe all this from Elysium, I will laugh like a drain whilst people point and scoff at the so called experts of the early C21.

    I had expected TUK to take the lead here and I'm sorely disappointed; what use is stuffing envelopes and talking to people individually on the phone when a legion will doubtless shortly be without the meds they need to live any kind of life. NICE guidelines copy pasted from a helvella post

    NICE uses the wonderful measure, quality adjusted life year (QALY). They say this:

    Generally, we consider that interventions costing the NHS less than £20,000 per QALY gained are cost effective.

    nice.org.uk/advice/lgb10/ch...

    From reports of the hell some go through without liothyronine, I'd say it provides massive quality adjustment.

    I need a bliddy holiday. Over and freaking out. 👿

  • I shall copy and past (change slightly) your letter. I think Lyn Mynott is doing things. This was a response a few days ago. I don't know if you saw it.

    healthunlocked.com/thyroidu...

    I am self-sourcing my T3 and have been for a while since Mercury ran out of it.

  • There are 3 people in this office - 2 of them part time.

    We deal with people at every stage of their thyroid journey, including (but not restricted to) the newly diagnosed, those who can't get diagnosed and the people who are currently having T3 problems.

    I'm sure you wouldn't really want us to ignore people who telephone or email for our help.

    Also, I'm not sure that people who have paid for the magazine or the info pack or books or merchandise or tests would appreciate finding that their orders were not being processed or their test results not emailed over.

    I'm not sure how else to express the fact that we are doing all that we can as quickly as we can, within the limitations of time, staff and money.

    Keep watching for posts from lynmynott for developments.

    Louise

  • Thank you!

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