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.

Not thyroid but I kept going to the GP with tiredness, and constant infections. Bloods always "fine" but I would sit opposite someone with tonsillitis and come down with it the next day
Went back to the GP and saw a locum after waking up every night drenched in sweat, she did more bloods. I got a call in the evening asking me to attend haematology as an emergency
Turns out that the FIFTY plus blood tests I had, she had opened every single one and found I was neutropenic on virtually all of them. I was diagnosed with autoimmune neutropenia after another 25 blood tests and started immediately on GCSF as my neutrophil count was 0.3 (2-8 normal range, below 0.5 is severe)
I cried when she rang me because I knew something wasn't right and I was sick of being sick

Why don't you answer the questions Minty, pp's asked you further upthread?

In fact, here is my bloods from 2008. Neutropenic, and showing left shift which means more immature neutrophils which is common with my condition. That was 2008 - I wasn't diagnosed or referred until 2016

They set the threshold high so they don’t have to treat you because it’s cheaper to tell you to go away.

I agree women are fobbed off more than men. I have pcos and I had to go and ask for scan after realising I probably had it. I had been treated for irregular periods and acne for years but the dr never put 2 and 2 together. The only advice I was given was to keep taking the pill. My skin is worse than ever now though. I suffer a lot with tiredness but the minute a dr hears I work and have a child it's just put down to that. But my job is not demanding, my dd is a good sleeper and many people with more cause to be tired than me are not asleep on the sofa by 9.30 of an evening. My iron/ferritin levels were right at the bottom of the range last time I was tested but still 'fine' apparently.
Noticeably, my non-women's medical condition was diagnosed fairly quickly and taken relatively seriously.
I'm now having to push for vit d tests because drs are reluctant despite the recent acknowledgement that pretty much everyone has inadequate levels. I don't hold out much hope. Been tested for thyroid too 'fine' again, but like others I found I'd probably be treated if I lived abroad.
My biggest tip is to insist on having a printout of any test results, don't let them just say fine or normal. Even if they are within range it's useful. I signed up to Evergreen Life and can access several years of test results through that.
Good luck to all who are trying to get tests.

This thread is so sad, yet unsurprising. I’ve long suspected women’s health issues are largely ignored compared to men. It’s the same in the US. I’ve had severe chest pains off and on for about five years. I had to fight to get so much as an EKG. It’s dismissed as anxiety. I take the anti-d’s, have the anxiety/depression under control, yet am still in pain. Yet whenever my husband has a medical issue, even minor, they’re falling over themselves to thoroughly check everything, diagnose quickly and give treatment. Pisses me off no end.

Self medicate, order your own labs, never take synthetic thyroid meds only use NDT, that's the only way to take control and be healthy otherwise relying on a regular GP you are fucked excuse my French. Also TSH means nothing you need the full panel of thyroid tests to see what's going on. It's a very expensive condition to have and there's no cure. I've spent thousands over the last 10 years on naturopathic docs who will prescribe NDT and treat according to symptoms. Also read Stop the Thyroid madness, it saved my life. Good luck!

It’s sad a doctor can read this entire thread then dismiss everyone as conspiracy theorists. I would have thought they’d question why so many women feel horrendously ill and yet are being dismissed over and over.

I’m considering getting the medication myself. I have severe fatigue - it stopped me from working, I have a couple of good hours a day. I sleep 12-14 hours at a time and still wake up exhausted. My thiroid result was borderline and when I asked just to see if it would was dismissed out of hand.

Fatigue has utterly ruined my life, but no - I don’t want to buy random medication off the internet, I want to be treated by my GP. But pure desperation that something may help even a little is winning out.

Go private. They’re the same with eczema ... not life altering? Then they don’t have the ££. Going private I have been given the steroid tablets and a dermatologist referral within 2
Weeks.

The fact that a GP can come here and dismiss so many women’s heartbreaking stories of unnecessary suffering is pretty telling.

I do wonder why Minty didn’t respond to the crucial question here - why does almost every other country have a diagnosis level almost four times lower than the U.K.? They’re all wrong and we are right? They are over treating women in a dangerous way? Where’s the evidence of this? What about studies showing that 95% of the population without diagnosed thyroid disease have a Tsh or below 2.5?

But no, just moaning women.

And yes, I have sent my blood off to private companies using the same labs as the NHS. Doing so has indicated three separate issues that my GP hasn’t picked up on.

I will absolutely get the vitamin D sorted as priority. I don’t think it’s the main issue since my levels were fine when tested last year.

I believe many ME patients are misdiagnosed and I think it’s an absolute scandal.

Agreed.

I think most doctors don't understand the delicately balanced endocrine systems of women - most medical research seems to be conducted on men for male disorders. The wilful dismissal and downplaying of womens health is a scandal - when we we rise up and demand better?

Many drs seem no better than witch docs tbh unless its physical injury eg broken bone.

The thyroid is the canary in the coal mine - it's an early warning system something is wrong. I'm in Aus and I still needed to take matters in my own hands, source someone who would do a series of blood tests I read about online and after that T3 supplements plus thoroxin (Levo) was prescribed as I wasn't converting T3 - a common problem. I take Vit D most days plus regular multi vitamin B jabs and magnesium jabs for cfs - hard to source but at least available

It's hard work to work a system that wilfully neglects women - in any country - but seems as though it's marginally better here (1 doc in the whole of the biggest state that gives me what I need so I have to travel a day once every 6 weeks)

I am sorry that people have had problems, I have an underactive thyroid and I have had no problems with treatment at all.

I was diagnosed in 2000, I had actually gone to my GP about something else and obviously something triggered with him, so he asked if I had ever had a test, I was sent to an endocrinologist, when he told me the symptoms I my get if untreated, he mentioned weight gain loss of hair and a few other things, this immediately rang bells for me as my mum had had some of them and had been worried, I asked if it could run in families and was told yes so I rang my dad and told him, mum got tested immediately and was put on a stronger dose than me.

I am due another prescription at the end of the month, I got a blood test sheet for this as they test me every year which is a pain tbh.

Fawkes
Dfod. You really don’t have a clue. If you have good health, bully for you.

It is not only women that get fobbed off with tiredness. dh has not been able to work for four years because of fatigue. In fairness they have tried various tests but have now come to the conclusion all he needs is a holiday (I may have walked out of the appointment at that point slamming the door behind me). It is also interesting how they manage to swop cause and effect so the latest is that dh is tired because he does not have a job to motivate him whereas the truth is he does not have a job because he was too tired to do it.

I don't think it's a conspiracy, at all. And I would literally take a bullet for my GP, he is fantastic. But having seen my sister in law, who has been chronically ill all her adult life (not with thyroid issues, she's on the rheumatoid side), move to another European country, be rapidly treated with a well-established medication and to have a significantly improved quality of life - it makes me angry, again, that we have so few doctors compared to other European countries and such constant pressure on the prescribing budgets.

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

1. The NHS has decided to set a diagnosis level 3-4 times higher than most countries. The organisation has gone against expert opinion and international consensus - in 2002, they were advised to narrow the guidelines which were then 0 - 5 TSH because this wasn’t catching all those with hypothyroidism. Instead it was increased, doubled in fact www.tpauk.com/main/article/why-does-the-tsh-reference-range-in-the-uk-remain-the-widest-in-the-world/

That’s not a secret conspiracy - it’s a deliberate and public decision.

2. on top of that, there is absolutely an issue with medicine being patriarchal. Sure, it’s better than it was - we are no longer being institutionalised with “hysteria” (it you’re unaware, look at the basis of the word itself)... but there are still significant issues with reduced funding into conditions affecting solely or mostly women (look at endometriosis vs diabetes, despite affecting similar numbers), still preconceptions about women’s health and attitude that affects care, studies show that men receive pain relief more quickly than women in A&E, etc. There are some studies in this article: www.theguardian.com/lifeandstyle/2017/nov/20/healthcare-gender-bias-women-pain

If you look at the sorts of conditions with symptoms overlapping with hypothyroidism (eg ME / CFS, fibromyalgia, IBS) you’ll read that they primarily affect middle aged women. If you look at complex and rarely diagnosed autoimmune and rheumatology disorders, you’ll see the same. Women’s health and hormone systems are complex, particularly as we reach middle age. As someone who has been diagnosed with both ME and fibromyalgia (when I don’t believe I have either), I can tell you it’s far cheaper because often they’re diagnosed against guidelines (eg without ruling out other causes), and there are no treatments and mostly no referrals either.

This isn’t a conspiracy - it’s out in the open. The fact that the deeply troubling stories are interspersed with those mocking and dismissing the issue is sad but expected. Yes, women are going to extraordinary and in some cases seemingly dangerous lengths to feel well again - what does that tell you?

There’s nothing whatsoever to prevent the NHS adopting the same strategy as almost every other country - diagnose at a level of 3.0 TSH, then treat according to the patient (treat if they’re symptomatic, wait if they’re not - although how many people in this country have TFTs done when they have no symptoms?). For those scoffing, I’d ask why they think this isn’t being done? It’s easy to monitor whether treatment is pushing levels outside of normal ranges.

I don’t think people really understand what it’s like until you’ve experienced it. Imagine you are suffering from a raft of very varied and debilitating symptoms (most likely you’ve already been diagnosed with something that can’t be tested for or treated) and you discover that all of your symptoms correlate with a condition that can be tested for and treated. You go and have a test and the results are outside of normal range, but you’re told they’re not abnormal enough to be causing you problems, when people around the world would already be getting treatment with the same results. You can’t work, your marriage is affected, you’re so fatigued and in pain that you struggle to leave the house, make a cup of tea, pick up your children, climb the stairs... but you still can’t get treatment. What would you do - just accept it? I don’t think you would.

Middle aged women are invisible. They're not of any use: neither fertile nor fuckable. Some overweight creature with thin, scraggy hair bleating about how tough life is? Get it out of the office so that more important people can be helped.

It is a fact that all medication is designed and tested for men only. The old joke about if men had periods, sanpro would be free is true.

When I first noticed the goitre in my throat, I popped along to see the GP who did a blood test. It came back positive and if I hadn't been proactive in chasing it up, they would never have got back to me. I was referred to the hospital and told it was a cyst and they would aspirate it there and then. The look on the doctor's face when it wasn't a cyst was a sight to behold. Cue a load more tests and I was told it was an encapsulated lump. About 15 years passed before anyone bothered to tell me it was a cancerous lump. I was fortunate not to need any chemo, but why did no one tell me the truth?

I have never been tested to see if my vit D is low. Of course, its bound to be, but it has never been suggested that it get tested. Nobody checks my iron levels, either. I would love to go to the GP and ask for these blood tests to be done, but I can never get an appointment on a day that I can go. I don't want to just start taking vit D without speaking to the doctor, as I also have blood pressure problems.

I would also love advice on an on-going, worsening problem I have with my voice and throat following the surgeries all those years ago, but I can't get an appointment when I can actually go. I'm pretty sure I'll be fobbed off anyway. No doubt, just like everything else, its my age.

i don't think there's a conspiracy, I just think that most GPS are overworked and the financial pressures on the NHS means that if they can fob someone off, then that is what they do. People like me, who are bolshy, then get a bad reputation, but hey - I'd rather be known as a bitch than feel like shit all the time.

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

I can't agree with this statement as Breast Cancer care is fantastic, and this has far more serious consequences if not treated quickly.

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.

And because breast cancer (which does also affect men, BTW) care is good, all care for women is fine? My mother had ovarian cancer, obviously not diagnosed until advanced despite years of symptoms, so let’s not pretend female cancers are all treated brilliantly.

In fact, I’d say that breast cancer care is as good as it is because in many cases it’s easy for a GP to spot and refer. Move to internal cancers where blood tests etc are required and suddenly early diagnosis rates drop off a cliff.

The problem with treating mild hypothyroidism is often treatment does not make people feel any better. This has been proven with studies. Everyone I know with significant hypothyroidism is on treatment and monitored properly. I would really caution against buying drugs off the internet to self medicate as you risk becoming hyperthyroid, which can be dangerous.