Putting people with hypothyroidism through hell

[giselajames]

I have been reading a lot of the questions on this forum and the following occurred to me: if you had cancer and your doctor told you you could not have a particular drug any more, because NICE thinks it is ineffective and you had to source it from abroad, there would be a huge backlash. We, who suffer from hypothyroidism, which is equally life threatening, have to put up with all sorts of bad treatment, drug unavailability and not a whisper is heard. Isn’t it time we went and demonstrated about the appalling treatment we receive or bombarded our MP ‘s to raise the question in Parliament?

[Lora7again]

I have tried and I got a polite letter from my MP telling me she would put my case to Matt Hancock but I haven't heard anything yet. Read my story on my profile page and you will see how badly I have been treated by the NHS. Thyroid disease is not that important to the NHS and I do not know why because it can impact other aspects of your health and well being.

[MichelleHarris]

I think we need to come up with a collective letter that we all send to our MP’s on mass and see what happens then x

[Gingernut44 in reply to MichelleHarris]

I totally agree with that. If all UK members of this forum were to write the same letter to their MP they might get the message - whether that would make a scrap of difference or not goodness only knows

[MichelleHarris in reply to Gingernut44]

I think it would. Each MP would get a few of the same letter from several different prople that they would have to reply to. They surely would start to recognise the extent of the issue. This is a huge forum x

[Gingernut44 in reply to MichelleHarris]

Of course, the next question is, what will the letter say - that

1) GPS should get better training on thyroid issues

2) that something should be done about the exorbitant cost of liothyronine to the NHS

3) the withdrawal of NDT from the NHS prescription list on the ridiculous grounds cited in the NICE Guidelines

Or perhaps all three ?

[MichelleHarris in reply to Gingernut44]

Yes and more. I would resist the temptation to say there is a masoginist attitude towards the mainly female illness Hypothyroid and Dr’s do not diagnose anymore but are well paid antidepressant pushers for big pharma as probably wouldnt get us anywhere and I’m just bitter lol x

[Gingernut44 in reply to MichelleHarris]

Perhaps we should keep this thread going - perhaps a new thread (I think this is getting lost in this one) to see what response we get to a possible letter to our MPs.

[Hillwoman in reply to MichelleHarris]

Sorry, I think you're wrong about that. A few months ago, before a relapse and other problems, I said I'd start a forum discussion about the role of sexism in the poor treatment of thyroid conditions, and autoimmune conditions in general. There is actually a wealth of sound evidence that demonstrates the problem. I still intend to start that discussion, as soon as I'm on a more even keel.

[fuchsia-pink]

It does seem strange - particularly as thyroid conditions are seen as sufficiently serious that we don't need to pay for prescriptions (England) - not just for thyroid meds but for anything - and given that levo is the third most prescribed medicine in the UK.

From the NICE guidelines conference I attended (see sep post) it seems that any evidence that eg T3 can be transformative is dismissed as "anecdotal" whereas a small-scale trial in an old peoples' home is deemed to be scientifically valid.

It also doesn't help that the NHS calculations of cost-effectiveness totally ignore that without proper meds, people who have been economically active (and tax-paying) can become too ill to work ...

[Hillwoman]

There is definitely a hierarchy of illness within the medical profession, which relates mainly to the many different and highly profitable strands of research available to pharmaceutical companies in the large fields of cancer, CVD, etc. Through big pharma research funding clinicians can build careers, status and income. Modern medicine is now dependant on the pharmacological approach. The consequence is that chronic illnesses which are not amenable to shiny new treatments are sidelined.

The other most significant factor in poor treatment of thyroid conditions (in my view), and the most insidious, is that the majority of us are women. And the majority of those women are middle-aged and older, a demographic group which society as a whole does not value.

[Wetsuiter]

I think that is exactly what happened with Herceptin.

And if I remember correctly, if you had the the audacity to pay for your own then NHS rules at the time meant you were then a 'private' patient and were left unable to access any of the breast cancer treatment on the NHS. Rules were changed to stop that happening, but the consequence is the other extreme of patients being advised by the NHS to self treat, but that's another issue.

One woman brought the case. We could learn a lot. it was only about 15 years ago

[Hillwoman in reply to Wetsuiter]

I remember that case, and the furore at the time. I don't think it's really applicable here, because clinical oncology recognised the treatment value of herceptin (that turned out to be a serious misjudgment; the trials were stopped too soon). The problem then was the cost of a new drug being sold under patent.

Liothyronine is cheap and easy to make, but the generics market in the UK allows pharma companies to indulge in price gouging, and the NHS procurements system does nothing to challenge it. This has been the subject of an ongoing complaint by a number of thyroid patient groups to the CMA.

Edited to add that my point further up about the lack of clinical interest in effectively managing conditions that largely affect older women means that little attention and effort is being applied to the T3 cost problem by those who have the power to make a difference.

[Hidden]

This has ALREADY been put to the UK Parliament and has been completely ignored.

Hansard: 17th December 2013 Volume 572, No 95

My MP has tried asking Q's and has received a mere brush-off.

I am awaiting reply to my letter to local CCG, asking answers as to why - eg they have LIED to me, why levothyroxine is greenlisted when it does not have any satisfactory trials to warrant its use, why they have appointed a SURGEON to prescribe private NDT prescriptions, why they are obeying to the letter mere RECOMMENDATIONS from a mere charity (BTA) concerning NDT but are ignoring INSTRUCTIONS from the GMC concerning what doctors MUST tell patients etc etc etc.

Recommend every other patient who has, like me, received appalling treatment for their thyroid problems to swamp the NHS and its many representatives with as many complaints as they can write.

[DippyDame in reply to Hidden]

And Holyrood...

I wrote to every MSP at the time, 3 responded. One in support.

theyworkforyou.com/sp/?id=2...

It all beggars belief

[Zephyrbear]

I wouldn’t want to argue with you about the treatment we, as hypothyroid patients, have to suffer but I must just take issue with you over the cancer comparison you’re making... I have a friend who, after two years of misdiagnosis during which her spine was completely compromised by multiple fractures, was finally told she had terminal multiple myeloma at the age of 48 and was prescribed an oral form of chemo which she had to take once a week that gave her minimal side effects. However, as the years progressed (she was expected to last no more than 2 at most) NICE decided that she should be given a ‘cheaper’ option which causes her all sorts of problems, not least that she has to spend 2 days a week with a sick-bucket by her side and she regularly passes out from the pain. She’s a fighter and the most positive person I have ever had the pleasure and privilege to call my friend and to date she has defied all expectations and survived 7 years, but it’s taken its toll on her.

[Hillwoman in reply to Zephyrbear]

I don't think anyone would deny that cancer patients also face consequences of cost-cutting. I made a similar point further up.

(I also have a friend who has survived 6-7 years after multiple myeloma and all the damage it did. She was a similar age to your friend when finally diagnosed. It normally attacks men over 60, which is why the condition wasn't suspected at first.)

[Hillwoman]

Absolutely agree that everyone should receive the same high standard of health, home nursing, and social care. Provision across the country is so variable and nearly always inadequate. It's so wrong - we're still a rich country.

[Marz]

I think an Ashram for the Terminally Bewildered in Kerala is the answer ! Yoga every day on the beach - good food - sunshine and so on. Also old people are respected ...

Hillwoman x

[Hillwoman in reply to Marz]

Sounds good to me...except that I'm made of planks (no yoga) 🤣 x

[Marz in reply to Hillwoman]

Plank is a yoga pose - so you will be fine 💥