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.

Something this thread proves nicely is that people value things more if they have to pay for them

And something Minty proves nicely is that doctors don’t give a shit if you feel better taking your health and medication into your own hands. You should just put up and shut up if your GP says you’re fine.

Being able to walk pain free and having your hair and eyebrows grow back, your scaly dry skin soften, your depression lift, your anxiety fade, your sex drive come back, your ability to think and talk clearly improve, your bone-tired exhaustion disappear, it’s all irrelevant because the NHS can offer you NONE of the above FREE at the point of service, so we should all stop spending money on tests and meds that improve our lives and listen to the wise doctors who tell us it’s all in our not-so-pretty little heads.

@FawkesAgain the NHS may not be sexist but individual medical professionals are. Some are also racist.

Unfortunately I've heard enough stories, including from a close friend who is a consultant and sister-in-laws' who are nurses, and also suffered myself to conclude this.

My friend was like these GPs initially believing that women particularly those from ethnic minorities complaining about poor treatment where lying, however due to her own ethnic background she decided to never say she was a doctor when needing treatment in a hospital. She was horrified at some of the treatment she received. This has helped her a lot when treating her own patients who are frequently some of the most vunerable in society.

IheartNiles (I do too, BTW!) so you’re saying that all the other countries apart from the U.K. are treating millions of patients without any benefit?

What you’re saying may be true for those without symptoms, but for those with symptoms and since Levo is so inexpensive, why can’t treatment be trialled once levels are outside the normal range (which is there for a reason) or even when people are in the normal range but greatly suffering? If it doesn’t relieve symptoms, it can be stopped can’t it? That’s what the NICE guidelines suggest, for those with a TSH of between 4 and 10 but as you can see from the stories here, that’s usually not what’s happening.

My VITD level was 11.1 last blood test. I have auto immune issues but they are torn between RA and PSA and I also have Sjogrens. No matter what i do, I can not get my vitamin D stable. Apparently it is used as part of the inflamation proces but I have been on 20,000 daily for two weeks then another 20,000 for two weeks a month later. I now take 5000 a day and am researching my own blood works like you.

My dad has become a fantastic advocate for his own health after having bowel cancer twice and he is at MA level with the depth of his research. He has a list of all the supplements he takes and has told me why and I am slowly working my way up to taking the same as him ( They are expensive though!).

As I made clear in the very first line of my OP, I am referring specifically to the thyroid, not all women and in general.

The thing is that there are so many endocrine type deficiencies and syndromes for which reference ranges are ridiculous, or GP education is way out of date and things which just don’t get tested for often enough.

And it does seem that things that disproportionately ail middle aged women are treated less seriously.

Hi, I see the thread has become more about people's experiences as opposed to th OP original
Question.

I live in Australia although am from the UK, I was diagnosed with Hashimotos five years ago when some routine testing regarding secondary infertility raised some flags.

My GP ordered me a full rack of bloods and I spend 6-12 months adjusting my thyroxine meds (currently100mg a day).

I then read everything I could get my hands on to try and understand this disease, it's so much more complex than any doctor has ever explained.

It can be caused by any number of things, I discovered that it was either diet or an infection, mine was likely the latter.

I read a lot about the varying 'ranges' and was surprised to see that these vary across the world.

In addition it seems that what's normal for one person is feeling like you are on your death bed for the next.

If anyone is interested I suggest reading Isabella Wentz, she has written a few excellent books, they are heavy going but so useful in understanding the results you get for all your tests.

You basically need to be as knowledgeable as you can about your disease to get the best treatments. The GP has a limited knowledge of its complexities and you need to be your own advocate.

I'm worried about the NHS, we have a different system here in that I pay for my GP apts which are subsidised around 70% so each GP apt costs me around £17 , I also have to pay for my own meds, and if I want to see an endo an apt is around 3-400$.

I do think it is interesting to compare with other countries - I usually compare NICE guidance with the French guidance as the French have a tendancy to ‘overtreat’.
As many have mentioned on this thread there are issues around vitamin D too.
It may well be something else, not just the thyroid so self medication is tricky.
Unfortunately in this situation you just have to go private. The NHS is going in the direction of basic healthcare and that’s it.

Not thyroid related but gynae/hormone related, had many issues recently and have constantly been fobbed off. Have been told that constant abdo pain and insanely heavy periods are 'just one of those things'. Got told by letter by a doctor I've never met to try and get pregnant and 'see what happens' (didn't even tell them I wanted to conceive). Had hormonal levels of a perimenopausal woman at aged 30 and got told they wouldn't do anything until I actually stopped having periods, by which time my fertility would have gone.

They've lost 4 sets of test results, sent me for various failed/cancelled tests, shifted me from department to department, complete lack of communication. When I queried what in the fuck was going on the doctor told me I was a complex case so no department wanted to take responsibility for me.

I've honestly been so shocked by it all. The only way I've managed to get any help is to be so so determined and like a dog with a bone, doing all my own research and pushing for help over and over. It has been completely exhausting and mentally draining.

Fanny have you had your blood calcium levels tested? Chronic vitamin D deficiency can be a symptom of a parathyroid tumour (benign), which I discovered in the course of my research. Definitely worth looking into if you haven’t already.

I’ve always researched my health issues and advocated for myself - it’s how my endometriosis was eventually diagnosed, after years of fighting, but unfortunately this has been an even bigger battle. I can research all I like but let’s be honest, many doctors don’t like this at all. I don’t expect GPs to have specialist knowledge of every possible

Sorry, phone crashed

Don’t expect GPs to be experts in everything, but I do think at a minimum their job should be taking their patients seriously. Clearly I am not the only one who has experienced this, and women’s stories relate to all manner of conditions, from rare to incredibly common.

Absolutely the thread has become about individual stories, as it should - they are important.

My OP wasn’t a critique of GPs but of a system that has taken a very different stance on this condition to other countries, and left people to suffer as a result. I want to know why this is.

The fact that so many women are not taking seriously at the primary care level is another issue, but one that’s entirely relevant.

YANBU. See also the medication protocols. I may get this wrong, because I'm writing about a friend's experience rather than my own, but as I understand it a few years ago they decided that doctors could only prescribe cheaper generic brands rather than specific manufacturers' brands. The brand du jour changed regularly and none were the same as the other. For my friend who had been pretty stable on one particular brand, this meant that some doses were too little leaving her extremely sluggish, whilst most were in fact too high leaving her heart racing so that frequently she was unable to sleep. So they had to prescribe much more expensive beta blockers, go figure. The damage to her heart will certainly have shortened her life but, of course, who cares, she's a middle-aged woman. Ultimately she joined the hordes going private and is back on an even keel,; if she hadn't been able to do that, I suspect she'd be dead by now.

I don’t understand why people are talking about conspiracy theories - I’m not accusing anyone of a conspiracy.

I think she might have been referring to your thread title . . .

Very interesting thread, by the way, it looks like a real issue.

Similar position. Thyroid issues run in my family, few of them with Graves Disease. I have pretty much every sign of an under-active thyroid to the point it affects my job and every other part of my life. I've had blood tests and they've all come back clear or 'borderline' but never an actual diagnosis, I just get fobbed off with more iron tablets that I have been on for almost 20 years now.

This is a revelation to me - I am obese, depressed, exhausted, I go to bed at 8:30 every night and am still sleepy during the day.

I’ve had thyroid tests and they initially came back ‘borderline’ and then retested as normal... but I wasn’t told the numbers, maybe I should push again?? X

Accidental unmumsnet kiss there!!

Balloon if people want to read conspiracy into the title that’s their choice. I don’t believe it’s a conspiracy, because I don’t believe it’s a secret, nor is it a plot to keep people sick for some dastardly reason. It’s a bottom line decision, based on finances, which puts them at odds with the international medical community. It may not be a conspiracy, but it’s most certainly a decision - and if anyone thinks that decisions like this aren’t made based on cost analysis within the NHS then they’re very naive indeed.

Of course, it’s a false economy (it’s a progressive condition with more severe health issues when it progresses untreated, not to mention the loss to the economy when people are too sick to work) but the NHS is good at those.

Oh, and of course there’s the fact that someone who can’t work due to the symptoms of undiagnosed hypothyroidism is extremely unlikely to be able to get any disability benefits, so I suppose that saves the country some money!

The problem is that many of symptoms relating to thyroid disorders could be caused by other issues, stress being a huge part of it. Of course, the more frustrated we get being convinced that our symptoms are due to a physical imbalance, the worse the stress, the worse the symptoms and so it becomes a vicious circle.

About 6 years ago when I first started to experience issues with my periods, I was given a routine blood test. Heard nothing back except for a letter saying that I would need to book another test in 3 months. I called reception and they said that it was just that one marker had come back high and needed monitoring. I wasn't bothered as healthy and forgot about it. It's only last year, when I started to experience disturbing symptoms that indicated a potential hyperthyroid issue that I was told my tsh had come back high at the time but subsequent tests had been normal.

This time (Feb 17), test showed tsh to be within the normal range, but my antibodies to be quite significantly high, so again, was told needed to monitor. A blood test 4 months later showed still normal tsh, and antibodies borderline. Was tested again two months ago, and showed tsh normal (2.26) and antibodies normal too.

Yet maybe in another country, I would have been put on medication all those years ago. I do get your point about trying and then stopping if getting better, but I personally prefer to let my own body regulates itself as much as possible as it's proven capable of doing. In my case, however much I don't want to be told (by others and myself) that a number of my symptoms are probably caused by stress and the consequences of it (lack of sleep etc...), I know that it does have a significant effect. It doesn't help that I am in that lovely perimenopause stage when anxiety and stress have become my closest companions. I can't wait for it to be over and feel my own self again.

Mooey YES YOU SHOULD! Please do that. We all need to keep pushing. If your GP won’t help, Thyroid UK has a list of companies recommended for private blood testing (not as expensive as you’d think)

I've been diagnosed with hypothyroidism for 8 (?) years now, and although I'm on levothyroxine, my symptoms have never disappeared. My levels aren't great, but they're 'normal', so no further steps and no referral to the endocrinologist. Interesting about the vitamin D, as I have what i believe to be the start of arthritis, so will request some additional blood tests. I think I may also request complete history of blood test results, and have a research into results again. One last try before I give up completely with it all.
Thanks for this thread OP.

YAB a little U

This situation is true in relation to a lot of endocrine problems. While thyroid problems are more common in women, there are others which are equally distributed and others which are more common in men.

The default in blood tests is to establish a statistical reference range which is expected to be a classic bell-shaped curve. The assumption is that the 95% of people who come back with a result in the 'middle' are ok. Only those who score in the top or bottom 2.5% are considered to have a problem. The default is that the laboratory will only flag those results that are outside the central 95%; everything else is labelled 'normal'.

Unfortunately, as far as I can tell many doctors either never understood what this means as I understand it most medical schools don't require maths beyond GCSE or have forgotten. They see 'normal' on the result and close off that line of enquiry.

Slowly but surely areas of this are being closed down. For example, things like blood sugar and cholesterol are being refined to 'traffic light' status -- ok, possible problem, definite problem. However, I have a history of endocrine tests which show a pattern of levels declining over time until they fell into the 2.5%, and it was only then that someone sat up and took notice. Of course, by then, a lot of the damage was done. The endocrinologists with that problem as their sub-specialty have just about agreed on a traffic light system but that message doesn't appear to have got through to GPs or labs.

I get what you’re saying swing and I would prefer my body to sort itself out too - but it isn’t, and if your thyroid isn’t working properly, it’s not going to sadly.

7 years ago I quit my full time job and moved out of London due to the awful state of my health (over the previous four years it had deteriated to the point where I worked and slept exclusively, and most of the time I couldn’t even manage the former). I had zero stress after that, I pursued something I enjoyed doing to make some money but there was no pressure, I spent my days crafting and mostly unable to get off the sofa, rarely ever able to leave the flat. Stress was most definitely not my problem and at that point I wasn’t concerned about being misdiagnosed, they’d diagnosed me with ME and at the time I believed that was right and my thyroid was fine.

Unfortunately about 70% of my symptoms don’t fit with my endometriosis and ME diagnoses. So they chucked in fibromyalgia, literally just added it to my notes without any further testing (turns out the joint and bone Pain may well just be the Vit D deficiency) but that still doesn’t explain all my symptoms. The thing that does is hypothyroidism. I could be totally wrong, but after nearly 11 years of suffering and now having results outside of the normal range which would get me diagnosed if I lived almost anywhere else, I only want the opportunity to trial treatment to see if it relieves my symptoms. That’s literally it. If it doesn’t, or my levels plummet to unsafe levels, I’ll have no problem holding my hands up and saying I was wrong and I’ll happily stop.

It’s incredibly frustrating and upsetting when you’re unable to work or parent effectively, knowing that there’s something easily accessible and cheap that could completely transform your life, and being told you can’t try it, especially when I could if I lived abroad.

I don’t want to go down the route of self medicating, but I can totally understand why people do it. I feel utterly desperate much of the time.

Talbot I would agree with you IF GPs were treated when they exceed the lab’s normal range, but you need to be 2.5x that for diagnosis, and despite NICE guidelines it seems many with symptoms aren’t treated in that 4-10 range. If 95% of the general population without diagnosed thyroid disease have TSH below 2.5, why on Earth is the diagnosis point 10.0?

Sorry I mean if patients were treated - not GPs, obviously!