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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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

284 replies

SinkGirl · 10/05/2018 22:02

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.

OP posts:
BestIsWest · 11/05/2018 16:49

Sinkgirl a parathyroid problem is exactly what I had ( I mentioned it up thread) and again it is a condition mainly affecting middle aged women and dismissed as minor by many doctors.

It isn’t minor. It can cause many many problems. Aching joints, muscles, bones, brain fog, lethargy, indigestion, bowel problems, kidney stones, osteoporosis, miscarriage, deafness, eyesight and heart problems. And more.

For anyone out there with low vit D or symptoms of low vit d, get your calcium tested. If it’s high ask for your parathyroid hormone to be tested.

We believe it’s much more common than is diagnosed.

And it is usually treated by a fairly small op.

Two symptoms of low vit D - a tender breastbone and difficulty getting up - out of chairs or the bath.

Anyone wanting to know more about Hyperparathyroidism - there’s a brilliant UK Facebook group
Or pm me.

Sorry for the detail btw.

HelenaDove · 11/05/2018 17:05

Waspnest im sorry to hear that Kidney stones is just as excrutiating as gallstones. I bet your DH feels like they are pissing him about and stalling on purpose Thats how it felt to me when i was back and forth back and forth and messed around while in excrutiating pain for nearly a year..............i posted it upthread.

When you are in pain and are made to go around and around in circles for nearly a year it FEELS like they are stalling.

HelenaDove · 11/05/2018 17:13

Thanks Thanks to all on here.

SinkGirl · 11/05/2018 17:34

Best I’m sorry, i definitely didn’t mean to say it was minor - maybe a slip of the fingers if I did? I had meant to say that parathyroid tumours are benign (as opposed to malignant), apologies if I wrote the wrong thing (brain not working!)

OP posts:
BestIsWest · 11/05/2018 17:59

No, no, I didn’t think you’d said it was minor - you’re absolutely right. I was just pleased to see you mention it in fact because no no one’s ever heard of it and I think it’s much more common than thought.

In fact it’s me that should be apologising for interrupting your thread. Sorry!

Racecardriver · 11/05/2018 18:02

Because to many people use the NHS. Welfare only works if only extremely poor people use it. Blame the middle classes rather than the NHS.

SingySongy · 11/05/2018 18:24

I had hashimotos, and a cyst on my thyroid which when finally removed was found to be the size of a cricket ball. The (male) consultant endocrinologist who I saw shortly before this took great delight in telling the observing medical student he had with him that the reason I was experiencing severe fatigue was because "modern women do too much and want it all". He told me to go home and ask my husband if he would allow me to give up work. He wrote a report basically saying that my symptoms were due to lifestyle factors. Ignoring the cricket ball sized lump in my throat and my protestations that I knew this wasn't regular fatigue.

After about 10 years of struggling with doctors I'm finally on a highish dose of levo and feel normal again.

milliemolliemou · 11/05/2018 18:34

OP Why don't you write to eg The Times doctor (Mark Porter) and include a link to this page? Or find out what the British Thyroid Foundation thinks?

Presumably everyone, male or female, with this problem is treated under the same guidelines - it's just women get the disease more? Someone upthread says the normal treatment isn't expensive in the scheme of things, so it wouldn't take a major push to get the guidelines in line with Europe?

SinkGirl · 11/05/2018 18:36

Don’t be ridiculous racecar - the entire purpose of the NHS is to be universal healthcare. It’s not “welfare”, and it’s not like the Medicaid system.

OP posts:
SinkGirl · 11/05/2018 18:37

Thanks Millie - wasn’t aware of him, I will try that.

I know various charities have tried in the past, and I don’t know why the British Thyroid Association persists in supporting the current system.

OP posts:
soulrider · 11/05/2018 18:57

This thread confuses things and is implying that NICE guidelines say you shouldn't treat a symptomatic person with a TSH of above 5 but below 10, and treatment should only start with a TSH above 10. That is not accurate if you read the guidelines and so they are not that far out of step with other countries.

If GPs are not following NICE guidelines that is a separate issue

SinkGirl · 11/05/2018 19:05

I’ve made it expressly clear on multiple occasions what the NICE guidelines are, which are that doctors may want to consider treatment when TSH is between 4 and 10 if a patient is symptomatic (which is very different than saying it should be treated). Given that in most European countries, patients are treated once their TSH exceeds 2.5, that is quite different, isn’t it?

OP posts:
CoffeeOrSleep · 11/05/2018 19:24

@Racecardriver does actually make a good point though - the system is better than many insurance based systems if you are the very poor or self employed. For middle class people in employment, the insurance based systems of most of the rest of the EU work better.

We have family in france and the speed that they are treated and how respectfully they are treated when they talk about symptoms to the Doctor is astounding to the British community.

It does make me scoff at all the "save the NHS!" Pro labour stuff doing the rounds on Facebook - the likelihood is most of us would experience a better health care system if we gave up on this system created for a very different society.

Busybusybust · 11/05/2018 19:34

This thread has been a revalation to me! I have all the symptoms of hypothyroidism. Like every one! (Oh, except constipation). I will accept them all except the overwhelming tiredness. Most of the time I feel as if I could just lie down where I am and sleep. On bad days, walking 100 yds is enough to make me want to lie down and go to sleep.

Did have a thyroid test a few years ago, and GP said it was within normal boundaries, which I accepted. She also said that I ‘didn’t look as if I had hypothyroidism ‘!!!!!! (I still have thick hair, but I have absolutely no body hair - no pubes, no under arm hair, no leg or arm hair, and very little eyebrows)

Thank you SinkGirl. Hopefully I can stop waiting to die!

Racecardriver · 11/05/2018 19:47

@coffeeorsleep I am Australian myself and private healthcare is a big thing there. If you go private you get first rate healthcare at a reasonable price (thanks to a relatively competitive market) and if you use state funded care you often see the exact same doctors as private patients because the government will pay for private treatment in some instances to the same extent as it would cost in a state facility and if you do end up in a public hospital it isn't that bad because it isn't completely swamped. Things in Australia were heading the british way but the Australian government realised the dangers of a nearly monopolised health's sector (in particular the lack of access to self funded care that this creates) so they subsidised insurance payments of you meet certain criteria for a while. It saved the privaye sector and in the long run saved the government money. I fear self funding my healthcare as much as possible (again, lack of services where I live because they are monopolised by the NHS) as a solem duty (not to mention a matter of self preservation!)

QueenArachnia · 11/05/2018 20:14

Very interesting thread. I have ill health, a mystery, I have been to my Drs countless times in the last few years, they must think "oh god not her again" when they see my name on the computerGrin

My official diagnosis is fibromyalgia. I have a LOT of symptoms and problems and have had tons of tests, including thyroid and been told they are all "fine" . I do have treated vit b12 and D deficiency.

I have had to give up work 4 years ago i am that bad, aching limbs, dizziness, stiffness, fatigue, my hair has been falling out for 10 years, i dont know why. I get hot sweats, Dr said not hormonal as i have no ovaries and have been on HRT for 9 years. I have been so bad today i literally cannot stand up straight, i am so weak with legs and back really aching, i feel dreadful and have lately develop joint pains and lumps on my finger joints, they are v painful.

I am not sure there is any point me going back to Drs, they cannot help

TenancyTroublesAgain · 11/05/2018 21:00

Yanbu. Thyroid management in the UK is disgusting. The range needs to be narrowed and further thyroid tests run even if TSH normal.

TenancyTroublesAgain · 11/05/2018 21:02

I had low folate, vitamin D and my B12 was JUST in their too-low range (180) and not only did they offer an explanation, they didn't even suggest supplements ...

Naty1 · 11/05/2018 22:17

I am hypo and have pcos.
I went to gp 8+yrs ago as dsis had hypo and dp and i had been ttc for 6+m so wanted to rule out hypothroidism. The gp was very rude and said the nhs couldnt afford to pay for treatment for fertility issues.
Also i was too thin could speak fine and something about my hair. Im sure i mentioned how cold i get. Like 35 deg or so. Anyway he suspected pcos instead. Well he was right about that. We ended up having fertility treatment but nothing for hypothroidism. Whilst trying again for dc2 they did another tsh test and i think it was 3.6 maybe so the ivf clinic treated for that. Aiming i think to get it under 2, though you do read around 1 is best for ttc.
I think the issues may be because tsh can go up and down maybe especially during pregnancy and after so it's easier to leave it alone.
Often women go hyper after birth then hypo around a year after. Certainly i think i did, hot sweats, with no sleep.
Tsh can also vary during the day and seasonally. Im sure mine is high over winter.
I have been lucky to be kept on levo even after the fertility treatment. Though they only test yearly.
Also ivf treatment can affect thyroid.
However it is debatable how much better treatment makes you feel (probably more due to them only maintaining you around 4.
During early pg your tsh will go up and levo doses can need to increase soon after positive results.
I feel i get insomnia with hypo

bunnyrabbit93 · 11/05/2018 22:29

Very interesting topic. I was diagnosed with hyperthyroidism in 2014. I have had a cyst on my thyroid for years after having glandular fever I never done anything about it until it started to hurt. I went to my GP and they did a TFT which was t3, t4 &TSH. I was told it's fine. I then found out I was pregnant and all of a sudden my levels were too high I had thyrotoxicosis. I have had loads of antibody tests all have come back clear so I am still none the wiser. I have never been medicated but I must say apart from heart palpitations I don't have many symptoms. They wanted to treat me with radio iodine but I couldn't see/touch my 2 DD's for over a week which I wasn't comfortable with or surgery. I have never been offered medication though x

BrendasUmbrella · 11/05/2018 22:48

My GP told me they were raising the range up to 10 and I thought he was just being goady because I was telling him I only feel right when my TSH reading is as near 0 as I can get it. I'm shocked that it's true. How utterly stupid.

It will just cause more of a financial burden on the NHS ultimately. Underactive thyroids rarely self-correct, and people who go untreated will just spiral health wise until their levels do go past 10. Hello high blood pressure, hello gallstones, hello weight health complications, etc.

Battleax · 11/05/2018 23:00

In the meantime I’m researching private endocrinologists who specialise in Thyroid issues

Are you nr London?

SinkGirl · 11/05/2018 23:07

I’m in Dorset but happy to travel to London (or Outer Mongolia or wherever) to see someone who can help

OP posts:
Battleax · 11/05/2018 23:11

I’ll PM you.

SinkGirl · 11/05/2018 23:11

Queen you sound very much like me, although I still have my ovaries (although all this started when I was on a drug that essentially turns your ovaries off). I’ve spent a long time feeling exactly the same - I don’t go to the doctor unless I have an infection or something. I tell them how bad things are but they rarely see me as what’s the bloody point? Anything I go in there with they attribute to existing diagnosis, or give me a new one (fibromyalgia) that can’t be proven with tests, and that’s that.

I’m not taking it lying down any more though. My recent results show that something weird is happening and I’m not wasting years of my kids lives being unable to function if i can help it. I do suspect if I were a man with a terribly important job, they’d figure it out.

OP posts: