To think the NHS are deliberately keeping people (mostly women) sick?

[SinkGirl]

This is specifically about thyroid issues. I’ve posted elsewhere about my recent test results, but after doing a lot of research I’m left extremely angry with the NHS.

If a patient goes to the GP with symptoms of hypothyroidism, —if they’re lucky— they’ll get a blood test. Often the GP will only test for TSH (Thyroid Stimulating Hormone), even though this alone is not a sufficient indicator of thyroid health.

The “normal” lab range for TSH is usually between 0.3 and 4.0 or thereabouts. If you’re within that range, you’re told your thyroid is fine, regardless of symptoms.

In almost every other European country plus America and Australia, if your level is above 3.0 (or in some places 2.5) you are diagnosed with hypothyroidism. Expert organisations have done studies and found that 2.5 -3.0 is the correct cut off for diagnosis.

But the NHS? It’s 10.0, up to four times higher than other countries, even though the lab range upper normal levels are around 4.0.

After a decade of battling for a diagnosis because I have textbook symptoms, I finally have a TSH level over the normal range (5.95), after paying for private testing three times. If I lived in another country, I’d be treated now without question (actually I would have been treated a long time ago). But instead, unless I have a very sympathetic GP, I must continue to suffer until it reaches a ridiculous level, by which point I imagine I’d be unable to function at all, and my risk of much more dangerous conditions would be even higher.

Why do they do this? They admit themselves that if the levels were lowered they’d have to treat a lot more people. So people, mainly women, are deliberately being left to suffer because of money.

The fact that it’s mostly women who develop hypothyroidism isn’t lost on me (since I have another condition that affects only women and which takes an average of 9 years to diagnose). Neither is the fact that, under the current system, anyone diagnosed with hypothyroidism is entitled to free prescriptions, a rule which may actually mean many people aren’t being diagnosed in the first place.

How is this allowed? Why is there not more outrage about this? Given the fact that thyroid issues commonly occur during and after pregnancy, it seems somewhere like Mumsnet would be a good place to start a campaign in this area.

I’m sure there are many women here who are going through the same thing I am. The last 10 years of my life have been horrendous in terms of my health and I’ve absolutely had enough.

NICE guidelines state that if a patient has symptoms and a TSH of 4-10, the GP can “consider” a trial of treatment. That’s it. It’s not bloody good enough.

Some friends and family think I’m slightly unhinged when I moan about how little help I got from GPs. I was “lucky” to have my Hashimoto’s diagnosed after a blood test a few years ago. However, years after my diagnosis, I discovered an appallingly high TSH recorded on my medical records over 30 years previously, which had been ignored.

My adult life was full of ill-health, with medication and other treatments prescribed by GPs. Looking back, it was all thyroid-related. There is no joined-up thinking. The utter frustration at not being believed is soul-destroying. I’ve had all the usual things thrown at me – teenage angst, young mum, mum of hormonal teenagers, hmm – approaching menopause, menopause, post-menopause … and then it was “my age”. I’ve read my medical file, it makes for very sad reading. I try not to be bitter (I bloody am).

My health declined much further after my diagnosis, and my GP admitted that she knew little about Hashimoto’s, but happily told me that my symptoms could not be thyroid-related. Eh?? My husband had to come to my appointments with me as I couldn’t have a coherent conversation, literally couldn’t (jumbled words, couldn’t remember words, total brain fog) – I also wasn’t capable of driving.

I spent years hoping for help, because that it what we are brought up to believe – your GP will help you. Purely because of my husband’s input, I begrudgingly got some referrals which resulted in having many other auto-immune diseases diagnosed, but the fight to get listened to by GPs was relentless. I was never confrontational or rude, but was very much regarded as “that woman with mental health issues”.

Like many others, I slowly took control myself. I now self-medicate with T3 (liothyronine) as well as my prescribed levothyroxine, pay for my own private testing (OK for me, but very unfair on those who can’t afford to do it), and have a private nutritionist. I have made massive diet and lifestyle changes, but it keeps me well.

I realise I will always have to monitor and manage my own health, and it makes me angry to think of other people still having to struggle with symptoms that they absolutely do not have to do. It is a sad fact of life now that we do have to be pro-active with our health, and we cannot rely on GPs to necessarily be part of that. I acknowledge that they may have a hard job, full of targets and goodness knows what else, but the lack of compassion in my life from them has made me very disillusioned with most of them now. None of my issues were rocket science.

And for those of you who think all this self-medication is dangerous, I have an NHS endocrinologist who acknowledges that I need it, but the NHS won’t pay for it because of cost (the NHS pay over £9 per tablet, I pay £20 for 100 tablets, the NHS is ripped off big time – it is still the subject of much campaigning by thyroid groups).

Sorry for the ramble, it’s close to my heart. Oh, and I have absolutely no mental health issues whatsoever any more.

isjustme
Levothyroxine (Non-proprietary) Prescription only medicine

Tablets, levothyroxine sodium 25 micrograms, net price 28-tab pack = £2.58; 50 micrograms, 28-tab pack = £1.76; 100 micrograms, 28-tab pack = £1.76
This is not expensive

just seen you are referring to T3 - is that because the drug companies are ripping off the NHS who have no choice if they have to pay a lot.

drearydearme … oh yes, the NHS are totally ripped off. There is a huge campaign about it all. I understand that the NHS may be limited in prescribing expensive medication, but this is only expensive medication in the UK!

Thank you op for posting this I feel sooo strongly about this issue. When I got diagnosed with auto immune Hashimotos after a long battle and being unwilling to accept Chronic fatigue syndrome as my diagnosis (!) someone told me you will have to become your own health expert as there is so little help/advice out there.
This is for a complex yet common medical condition which if untreated correctly can rob Woman of energy and the ability to lead a normal functioning life.
It is also a condition that affects mainly woman, 1 man to every 10 woman. You are spot on OP there is NO OTHER CONDITION where one tablet suits all, which is what the NHS currently offers when it gives us no other options than Levothyroxine. If you remain symptomatic on Levo then you are told it cant be your auto immune condition because Levo replaces everything so it must be something else.
Can you imagine this for other conditions ? Imagine this as a scenario... I feel ill on that insulin Doctors " well it must be something else," could you be depressed instead?"

Or cardiac symptoms continuing ? Doctors "well I cannot increase or change your meds as this one medication is superb and fixes everything!"
As someone I know once said there is more treatments for athletes foot than for thyroid conditions.
Thankfully some woman in Scotland have petitioned the Scottish Government and although progress is slow I believe some changes are being forced through thanks to woman who are no longer willing to put up and shut up.
It is a national disgrace the way this condition is treated. One look at thyroid unlocked health forum or stop the thyroid madness (US) site shows you how woman are fighting back at being misdiagnosed and mistreated.
I now pay for private blood testing which gives a much clearer accurate account of my thyroid levels than anything offered on the NHS. I have to buy medication abroad which is expensive but allows me to work albeit part time and function. I will never be as well as before the diagnosis but I am so much better than when I was on levothyroxine only.

I totally agree op it would be beyond helpful if mumsnet started a campaign on this as it is time to change the way woman are mismanaged with this horrible life altering condition.

Would Mumsnet support a campaign ?? I have noticed in the past any articles on woman's health always say levothyroxine will sort it all out, whilst that may be true for many a LOT of woman are left struggling with symptoms even on Levothyroxine.

@walnutwood I was the same... perfect TSH and T4 levels, but goitre and Hypothyroidism symptoms. There is research to suggest that if you have a polymorphism of the DIO2 gene then you can't turn T4 into T3, and as this happens at a cellular level it doesn't show on blood tests. Therefore Thyroid tests will all appear normal. I've discovered I'm homozygous for this polymorphism so I'm waiting now to see an Endocrinologist about obtaining T3

Hello - sorry to post on old thread but can those of you who buy thyroxine online please tell me where from? I'm on holiday and have lost some of mine and really need to buy some and get it posted to me.

Normal thyroxine? Are you in the Uk? Just ask at a chemist.