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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:
HelenaDove · 10/05/2018 22:48

Im so sorry to hear what ppl on this thread have been through. Its tantamount to mental abuse ..................with a side order of NHS press releases moaning about obesity.

Someone has told me that an NHS #metoo moment is coming...............

SinkGirl · 10/05/2018 22:48

No RT3 yet as there didn’t appear to be a conversion issue in my previous results

Sorry everyone, I’m shattered so off to bed but will pick up in the morning.

I genuinely believe this is a women’s health issue and I’m tired of hearing the same stories about a variety of conditions affecting only or predominantly women. I know many people have already tried to change this so it feels redundant to try again, but I feel like I need to do SOMETHING. I’m fortunate enough that I can afford (just) the odd private blood test or private appointment / buying meds if I need to, and am able to do research. Many people aren’t so lucky and they shouldn’t suffer for it. I don’t know how GPs can fob sufferers off like this with a clean conscience.

OP posts:
SinkGirl · 10/05/2018 22:50

UpstartCrow I absolutely agree with you, but this issue definitely predates this government, and the coalition government. I have no doubt it’s even worse now than it was, having had dealings with the NHS for so long I’ve seen how bad it is now.

OP posts:
Childrenofthesun · 10/05/2018 22:50

I don't know anything about this issue but I am shocked. It might be worth people who have been affected writing to their MPs? It may depend on their views of the NHS, but there could be some sympathetic ones who could start asking some questions.

SinkGirl · 10/05/2018 22:54

Helena it’s definutely mentally abusive!

When I was 21 I was given an emergency laparoscopy after five days in hospital in agony by a consultant who told me beforehand “I’m not going to find anything, you know” He came round the next day said “told you I wouldn’t find anything - you need a counsellor, not a surgeon” and discharged me.

When I was finally diagnosed a few years later, I got copies of all the records - he didn’t even make enough incisions to be able to perform the inspection of the pelvis (only incisions for the gas and camera, no tools) and I was in theatre for a total of 9 mins. He clearly inflated me, stuck the camera in, looked at what was immediately visible and closed me back up. And in doing so made it very difficult for me to get someone to repeat the test.

Why? No idea. It was a Friday night, maybe he wanted to go home.

Right, I am going to bed now!

OP posts:
LadyWithLapdog · 10/05/2018 22:54

UpstartCrow - if people bother to read the link you posted I hope they'll see for themselves that GPs and their representatives reject the initiatives of financial incentives for reduced referrals. So please don't clickbait like this. I get it that people are frustrated but you're quite frankly barking up the wrong tree in this case.

cakedup · 10/05/2018 22:55

After my blood test results came back about a year ago, I went to the chemist to find that the GP (female, may be relevant) had prescribed some meds for my low thyroid levels. It was news to me and I didn't want to go ahead and take them without discussion first. So I made an appointment at my practice and got seen my another (male) GP who told me that I did not need the meds. Apparently...if I remember correctly...my T levels were on the low side but TSH were normal (or was it the other way round?!). I asked another male GP about this and he also confirmed I did not need the meds. I thought it really strange that the first GP just went ahead and prescribed and avoided making appointments with her.

Forward to present time, I had a recent blood test done and asked for thyroid levels to be checked as I was gaining weight, had consistent constipation and fatigue. Same result, bit on the low side but nothing to worry about.

I have now asked for a print out of my blood test results (which I have to pay for!) but to be honest I have no idea what I'm looking for.

Pops78 · 10/05/2018 22:56

I'm so sorry you are all having such struggles. It took 2 years from childbirth (which kicked it off I'm sure) with huge weight gain, depression, permanently feeling like I had the flu.. not able to return to work. The Dr never even suggested it and when I asked said she didn't think I needed test was very snooty and dismissive but gave in. 2 days later she called me personally to say I had to come straight in to get Levothyroxine. My TSH was 29!! No wonder I felt horrific. Had been stopping me ovulating too and within 4 months I got pg 2nd time so who knows how many women are not having babies because of this. I still have so many probs regulating. My dose is 150 but I'm not feeling great at mo, GP said test fine at 3.9 today, I know I need to be closer to 2 to really function... I was under an endo when I got pg and I have to say GP and Endo they all just focus on the numbers and not the individual and how they are at diff levels... I feel like this condition is still really not understood properly...,good luck to all x

leggere · 10/05/2018 22:57

Thanks again SinkGirl. All this is a disgrace!!

megafatCEObaby · 10/05/2018 22:58

I'm convinced I have an underactive thyroid but I've had several blood tests and been told it's fine. I never thought to query the level. I think I will tomorrow.

MyRelationshipIsWeird · 10/05/2018 22:59

When I saw your title I knew it would be thyroid issues. The way women (& it is mainly women) with thyroid problems are treated in this country is scandalous. I know we're all supposed to be oh so grateful for the NHS but its not fit for purpose when they don't bother to test most of the time, then when they do, they completely dismiss how you feel as long as the numbers are 'in range'.

They hand out anti-depressants like they're Smarties for some reason and each time I've been happily prescribed ADs, I've gone on to diagnose myself with some other issue with private testing or insisting on further tests from the GP. It's appalling, that just when you are at your lowest, physically and mentally with all these awful symptoms, you have to push yourself and be your own advocate to try and be treated like a human being.

I also take NDT, sourced from overseas online, because the NHS only allows shitty Levo and then only in the exact dose they prescribe with no flexibility. I get my own tablets, dose myself depending on symptoms and feel so much better for it. (apologies in advance, I can't give out the details of where I get my meds from - if you're interested please join one of the groups online where experienced mods can help with that.)

It has really made me lose faith in doctors generally - my mum went through the same thing to get diagnosed with her thyroid problem, fobbed off as 'women's problems' and left in pain, needing surgery for a frozen shoulder (which is often a symptom of under-treated hypothyroidism) and then her breast cancer was also missed due to being fobbed off with "oh its probably bruising from leaning against the table" as she was so ill she would fall asleep while eating dinner. FFS Angry

Women are being let down left right and centre, especially those too polite and trusting to make a fuss.

MyRelationshipIsWeird · 10/05/2018 23:01

@cakedup when you get your results post them on here with a title to lure in the thyroid experts and they'll advise you.

Teaformeplease · 10/05/2018 23:01

I went to my GP to ask for my thyroid function to be tested because I had many symptoms of hypothyroidism. Initial tests showed that I was borderline and the GP wanted to wait and repeat the test in 3-6 months time. I wasn't happy with this and asked to have my TPO level checked (this is a test for thyroid auto-antibodies and will be raised in autoimmune thyroiditis (Hashimoto's disease). Mine was indeed raised showing I had Hashimoto's. I started on a low dose of thyroxine and pushed for regular blood tests to check my levels. The GP was happy to get me just into the normal range on a low dose of T4. I had to push for my dose to be increased to get my TSH

EuroLiney · 10/05/2018 23:03

This is as pp says, very shocking to read. And yet rings so true.

Symptoms of thyroid issues = menopausal woman.

Symptoms of menopause = moaning woman, offer anti-depressants.

Symptoms of depression because of fatigue, stress, caring for two generations, financial worries, work = pull yourself together and stop eating cheese.

All above from my GP health centre.

Luckily I got decent advice on MN and am doing better now. Which includes levothyroxine, gynae surgery, HRT and saying no to citalopram.

samarkand · 10/05/2018 23:03

This is a national scandal. I was subclinical hypothryroid for several years and forced to reduce my hours to part time because of severe fatigue. As a single woman, this has had a severely detrimental impact on my current finances and on my future pension. Since my thyroid eventually tipped into the range for a diagnosis, I have been on levothyroxine and able to return to full time work; however, I suspect I will not be able to continue working until my pension age of 67. I still suffer from weight gain, hair loss and fatigue - my doctor asked for a full thyroid panel on my recent blood tests, but this was denied by the pathologist at the hospital.

MyRelationshipIsWeird · 10/05/2018 23:04

@Pops78 - you could be me, exact same story, except my TSH was over 200 - I don't know how it can even go that high Grin The locum who called me in (immediately!) said "You must be feeling very poorly indeed". Er yes! I could have hugged him!

StellaRockafella · 10/05/2018 23:04

Yes, absolutely.

They don't even try with the thyroid tests. Apparently guidelines for 'normal' differ around the country, and most people tested seem to be told they're 'on the range of normal', even though what's going on with them most definitely isn't normal. The NHS doesn't even test all the thyroid markers either.

When I went to my GP with all the symptoms of Hashimotos, I was told my results were on the scale of normal, and I should just accept this is what happens with women 'of my age', and I had to just get on with things.

I think what can make it trickier is that thyroid issues often crop up and go hand in hand with perimenopause/menopause too. And this is yet another major area so many GP/doctors seem to know so little about and how to diagnose, manage and treat. Blood tests aren't always conclusive even though you might be displaying every single symptom. They like to prescribe antidepressants, or belittle you and tell you're too young, or to come back when you've not had a period for 12 months.

I'm so angry about the lack of due care with major things like this which (in my experience)have effect/of will effect every woman I know. There seems to be a fundamental lack of understanding about how hormones effect women's bodies and not enough dedicated research into something that pretty much every biological woman will go through. Yet if men were to be similarly effected, I have no doubt they'd have found a 'cure' or something close decades ago. After all, so much money goes on researching predominately male issues like baldness and erectile dysfuntion. I recently learnt that the reason heart transplants came about is because heart disease/attacks effects way more men than women, so that was why so much money was spent on researching this and finding a cure. It was in a time when men were the breadwinners, so 'had to be saved' in order for their family to survive.
The cynic in me feels that they don't research predominantly women's things like thyroid problems and perimenopause/menopause because the latter doesn't effect men, and the former to much very small degree. Also, these things mostly effect women past their child bearing years, and we live in a society where youth is premium and older women are not valued. (At least this is how it seems to me).
Ergo, women are dispensable and their health is not important enough to consider.

It's throughly depressing.

cakedup · 10/05/2018 23:04

Thanks for the tip MyRelationshipIsWeird

UpstartCrow · 10/05/2018 23:06

@LadyWithLapdog there is thread after thread of women with PCOS, thyroid issues, problems with tonsils, all saying the same thing.
We cant get treatment.
At what point will you accept people aren't scaremongering, and that this is part of a wider, deliberate program?

MiniMum97 · 10/05/2018 23:06

I completely agree. I was diagnosed with hypothyroidism last May. I had felt increasingly more and more ill for many many months/years before that but was only finally diagnosed when my TSH and T4 were just out of range. TSH was always over 3.0 from my first test about a year or so before but I had to wait until I fitted the numbers before I got medication. Told by a number of doctors "it's not your thyroid". I knew I was from my first blood test when my T4 was one point below range. The next test it has gone up one point to the very bottom of the range so apparently it's all fine. Levothyroxine resolved 90% of my symptoms after a few months.

To get my diagnosis I also had to do a number of private blood tests. As my GP wouldn't retest for a year. I tested every 8 weeks until results were out of range. All the while the NHS wasted money on neurology and dermatologist referrals and 2 MRIs.

In December I started getting palpitations. Went to A&E who decided nothing was wrong. Went to GP a couple of months late who told me I was stressed and to go home and not worry about it. Almost believed him but then realised that neither of them felt it was appropriate to check my thyroid! I really want to complain because it's such an obvious thing to check it's pretty negligent in my eyes. Anyway did my own private test again and my thyroid levels had rocketed. Months I was taking levo when I must have had high thyroid levels. I am so angry! Anyway roll on a few weeks and found out Monday that I gave Graves disease and endo suspects I also have hashis despite 6 negative hashis antibodies tests :-(.

LadyWithLapdog · 10/05/2018 23:09

UpstartCrow - I referred to your very particular slant on something that is not widespread or accepted practice. You accused GPs of having a financial incentive to not refer. I don't actually follow the medical section here on MN so I'm not getting dragged into the wider conversation.

Eveforever · 10/05/2018 23:12

Since we are on the subject of thyroid problems, has anybody here had trouble with prolonged periods? I've had my period almost continually since Christmas and my GP thinks it's related to my thyroid, even though my blood test results for my under active thyroid are the best they have been for years.

shouldwestayorshouldwego · 10/05/2018 23:14

I unfortunately have the opposite problem. Been on levothyroxine for 10 years, really bad insomnia which stops when I don't take it. Without it (for months) I have no symptoms of hypothyroidism and feel much better and can sleep but the computer says that I must take more.

EnthusiasmIsDisturbed · 10/05/2018 23:14

I have luckily had two GP’s that have a good understanding of the condition it often hard to describe how debilitating it is

The first one I went to I went becuase I had numbness in my arm and neck she straight asked if I always looked so tired looked at my blood test (had been tested a few years before and it was a little low) and suggest I was tested when I got the results levels had changed so tested every few months as there was quite a significant change and I wasn’t quite bordering I started medication.

At first it was ok then symptoms returned and with many visits to the doctor/blood tests and gradually increase my meds I ended up on 125mg of levothyroxine

I felt quite ill at times and I was still tired and gaining weight (though not like in the first year) so I assume I am still hypo I decided to stop my medication and started to feel better then a few original symptoms returns and went back and saw another doctor (had moved) told her I just don’t feel right and she looked at my history and referred me to a endocrinologist and I choose to keep over medication until I saw him

Best thing and should have seen one a few years ago I have been over medicated for sometime and he said it’s not surprising I didn’t feel well as I was hyper (shame no weight loss) but why was my meds upped Hmm and I felt just as bad but in a different way

I am still just bordering but as my thyroid has fluctuated he shall see me for the next 18 months

Back on 25mg and feel so much better and sticking to the same GP

But it was explained to me that the side effects of levothyroxine can be ongoing but how important it was to keep on the right dose

Also have been reading that many experts are suggesting that some people are medicated too soon. The
endocrinologist told me that for some they don’t get many symptoms when borderline and others can feel really ill

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