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.

Conversely I developed a health condition rare in women and generally a mans issue.compared to all previous treatment it’s been so different. There’s proper protocols to accessing medication efficiently, sympathy and understanding and the waits are ok. As a mother of three I’ve been quite bemused by the care at times after previous experiences of hospitals!!!

As a GP of 20+ years I find the ill-informed conspiracy theories in this thread really alarming.
It’s also worrying that people are considering buying thyroxine themselves. Are you aware of thyroxtocosis, atrial fibrillation etc?

Words fail me, they really do.

Yep another one here who has had the same stupid lack of treatment for hypothyroidism.
After being fobbed off my GPs I decided to take my own health into my own hands and did a lot of research and read a number of books including Dr Peatfield's book Your Thyroid and How to Keep it Healthy.

I source NDT(Natural Desiccated Thyroid) from overseas.
I did a lot of research and followed the Stop The Thyroid Madness protocol for NDT.
I use a thermometer to check my daily temperature and a pulsometer to measure heart rate. Have medichecks blood tests annually.

My body temperature(before treatment) was 34.5deg C...I was hypothermic and could not keep myself warm no matter what the temperature in the house.
My legs were swollen with fluid. I had pain everywhere and could not keep awake or keep my eyes open!

Started treatment slowly and steadily and within a fortnight I started to feel a difference. Best thing I ever did was to take my health into my own hands.

It's a shame words fail you, Mintychoc1. Can't you do something about this situation?

Mntychoc I can only see one or two posts you could apply that to, tbh. I've got a doctorate myself, I'm not an idiot. I'm a person, who wants to be healthy for myself and my family.

I don't need citalopram or to be told my problem is being a 50 year old woman.

One thing that's making me doubt if it's my thyroid is that I'm not constipated. Is that a key symptom? I used to have a lot of trouble with not going to the toilet for days, but I make sure I have weetabix every morning and don't have the problem much anymore unless i have a really bad few days of eating (which is expected).

Just adding my support, and though I've not been personally affected, I have two good friends who have been through the ringer in getting ongoing effective support for thyroid issues.

@Mintychoc, in your dismissal, how would you respond to the differences in NHS guidelines compared to many other countries?

Mintychoc1 'Conspiracy theories'

I don't think that's what we're describing at all. We're merely talking about our own experiences and failure at being listened to/diagnosed and in some cases, belittled and dismissed.

Thyroid issues seem to be taken far less seriously in the Uk than they are overseas. It seems to take multiple attempts and tests to be successfully listened to/diagnosed here whereas my US friends are listened to from the outset.

My current GP is a marvel. (but it's taken 18 months and a few different practises to find one who listens to what I'm telling him). We've retested my thyroid and I do indeed have Hashimotos, something my previous GP dismissed, along with any thyroid dysfuntion at all.

I had to give up work 5 years ago due to complete and utter exhaustion. The doctor I saw suggested I be tested for hypothyroidism. The results came back with a TSH just above 'normal' and a T4 of 8. They wouldn't treat me and I had to repeat the test 3 months later.

This time my TSH was just within normal but my T4 was even lower. As I'd read up on symptoms I tried to plead my case but the doctor just said "oh you've been reading up on it have you?" and sent me away.

I was so certain that it was my thyroid giving me all these symptoms, even little things like I don't have an outer part of my eyebrows, that my husband talked me into seeing another gp. I was so lucky, this doctor is marvellous. He treats me on my symptoms and really seems to understand thyroid issues. I'm on 150mcg of levo and I feel best with hardly any TSH at all. I dread him retiring as I doubt the other doctors at the surgery would let me get this close to being hyperthyroid.

Are people really sending their blood samples by post to laboratories you know nothing about and buying stuff off the internet from companies you know little about?! On the say-so of authors with an interest in selling their books or podcasts or whatever.

No, LadywithLapdog I'm acting entirely within NHS guidelines - which is more than some GPs seem to be doing.

I lost 10 stone 16 years ago.. I got gallstones and it got so bad i couldnt eat SOLID food. i went through months and months of excrutiating pain and A + E admission. In and out of A + E for TEN MONTHS. then doctors coming to my home to give me morphine injections whenever i had an attack . Finally a doctor prescribed me morphine pills which melted under the tongue that i took every time i had an attack. First attack was 3 July 2002 Scan was on 19 Dec 2002 after months of A + E admissions . Early Feb 2003 i got a letter telling me id have to wait for ANOTHER YEAR. It was only after a private consultation with a surgeon and then another admission to hospital and an NHS appointment with the same surgeon that my op was promised within 6 weeks It was done 5 weeks later on 28 April 2003.id lost 8 stone by the time i had my op. The surgeon and two doctors told me it was caused by losing weight too fast. (slimming world) The pain was excrutiating and the first attack appeared after id lost nearly 4 stone. Back then i had no idea fast weight loss could cause gallstones I was losing a stone a month and whenever i did try to slow it down i either stayed the same or gained.

I actually did seriously consider suicide especially after i got the letter telling me id have to wait ANOTHER YEAR. I thought it was beyond cruel especially when id lost the weight by myself with willpower.

i believe due to mixing tramadol with as many over the counter drugs as i could in the early months to stop the pain i have been left with long term issues and its also left a bitter taste in the mouth TBH. Im grateful for the NHS but i was in so much pain i was thinking of overdosing (which i was bloody close to anyway) i also think the fact i won Class Slimmer of the Year and started to appear in our local papers Maybe that was a factor in me getting the op sooner than that awful letter said but i shall never know.

I think the problem is it’s a complex condition with many symptoms and effects people differently

I was told by the an understanding GP I should have seen an endocrinologist long before I did and when I saw him he didn’t seem that surprised that I ended up being over medicated (and reading up this isn’t uncommon)

If it wasn’t so expensive to see a private endocrinologist I would have seen one years ago as I knew it’s was my thyroid that was making me feel ill

I wasn't diagnosed with hypothryroidism for years despite continually experiencing symptoms and having repeated blood tests after which I never received results and was just told over the phone 'I was fine' - eventually I saw a private doctor who diagnosed me just by looking at my puffy face and eyes alongside a lack of eyebrows and immediately put me on levo (which I later decided to change to NDT). I too have lost my faith in mainstream doctors - I refuse to let the NHS have any input into my treatment and so have private blood tests and source NDT from overseas. If you have the funds I truly believe this is the way to go and allows for much greater control over your health. I pay approx £100 for a year's supply of medication and order a blood tests through medichecks or blue horizon to monitor things if if I feel unwell. Vitamin B injections have also helped with the fatigue alongside mega doses of Vitamin D.

I should preface this by saying that I know a lot of doctors, was raised in a medical family, and really respect their opinions. I generally am inclined to rely on their advice and directions.

But I've been worried about this as we are going to start TTC and I have an underactive thyroid. I know that for TTC it should be lower than normal and I have a close family member that couldn't conceive initially because she was borderline. In my home country, my doctor was the one that brought it up with me. I used to get blood tests much more often as my values could change rapidly (also was above 200 at one point).

Here, I'm too self-conscious to even ask about it. I'm always reading about immigrants using up the NHS and feel like a burden. I try to avoid using the system as much as possible. Additionally, I've been losing weight but am still quite overweight and am worried the doctor would just tell me I shouldn't be TTC.

I'm worried that it's going to affect our ability to have a child. Time really isn't on my side. I will need to go see the doctor and ask at some point, but I'm not sure what I'll do if they decide nothing needs to be done.

LadyWithLapdog don't be so niaive

Oh and I suspect we'll now have a 'Prove The Point' situation where a lot of women's separate medical stories becomes 'This Thread' that can be piled in on and dismissed.

Well MN raised the childbirth injury scandal and continue to do so. It's gaining a lot of traction and support. Along with campaigns around PND and pregnancy choices for women in Northern Ireland.

I trust this site, and I think this IS a massive medical issue for women.

sinkgirl I have hypothyroidism and hashimotos, treated for last seven years. The endo (NHS) said it was incredibly important to make sure my vitamin D levels were good (ie at least 100 mol) When I was first diagnosed seven years ago, my levels were 35 mol. My TSH was about 15 at that point.

I don't want to be an armchair advisor but have you considered that Vitamin D is the big issue here as well as the levothyroxine you need. You should aim to get your Vitamin D up in order to allow your thyroxine medication to be absorbed properly, as Vitamin D affects the endocrine system. You can buy Vitamin D over the counter for very little in pharmacies, my NHS endo recommended Healthaid 10,000 for a weekly dose as a maintenance dose. At one point when my thyroid relapsed and I felt dreadful one Feb, I took an emergency dose of 20,000 to get my vitamin d levels up (I felt sure they were low due to joint pain, tiredness etc) When tested a few weeks later by doctor my Vit D levels were only 50, so endo then prescribed further dose to up me to 100 optimum.

I'm suggesting you sort out the Vitamin D as a priority, as it goes hand in hand with thyroid medication, and the thyroid medication needs to be handled much more carefully than some posters on here suggest. too much can cause heart problems, it can be a very fine balance getting dose right. Whereas vitamin d is unlikely to be taken in toxic doses, as long as you stick to initial booster then maintenance dose of 1000 a day or more if endo says so!!

Cag have you read a Guardian piece by Essex Serpent author about her Graves disease - about her experiences being undiagnosed with thryoid issues over a time, she was hyper too (Graves is hyper but can cause some of the symptoms of hypo strangely, like anxiety and tiredness) Vitamin D is also important for ME, my friend with ME takes 4000 a day, (has no thyroid issues but bad ME/CFS) A lot of breastfeeding mothers can be deficient in vitamin d, and their babies need supplementing too. I wish I had known that when mine were little luckily I didn't drive and was in the sun a lot but I'm sure it wasn't enough or as much as I needed. -anyway, waves from housekeeping thread

Butterfly - okay, I'll leave you to it then.

Are people really sending their blood samples by post to laboratories you know nothing about and buying stuff off the internet from companies you know little about?! On the say-so of authors with an interest in selling their books or podcasts or whatever. No, I'm doing it on the say so of thousands of patients in this country and in others where doctors are more open to other types of medication and to treating the patient not the numbers. Patient to patient experience shows that this stuff works. The NHS is keeping women sick. If I stick with them and their pathetic half-hearted treatment I will be living half a life, my DCs have half a mum, I can't contribute to society because I can barely walk and can't function to work, with depression, not to mention all the long-term health implications which will cost the NHS more money in the future. If buying meds from trusted sources and listening to patients who have experience of helping each other makes me feel well, I'll take it.

My friend just had a scan and it turned out he had a bulged disc behind his heart. They were treating it but he was still really in a lot of pain (felt like he was constantly having a heart attack) amongst other issues. Anyway he decided to go private and requested his reports from NHS - turned out along side the disc were two other problems, way bigger problems, that were found but he wasn’t told about and so obviously not being treated. He’s being privately treated now and is finally being more like his old self and not completely riddled in pain and enduring something that was eating away at him.

My friend has energy problems and they couldn’t figure it out for love nor money. She was told it was because she had gained weight... but she had gained the weight BECAUSE she had no energy. Still non the wiser

It’s also worrying that people are considering buying thyroxine themselves. Are you aware of thyroxtocosis, atrial fibrillation etc? Minty people aren't buying Thyroxine, it's shit.

sinkgirl I haven't explained, when I was first diagnosed seven years ago, I was told about the vitamin d but I really didn't take it in, or understand the significance, I took a dose got a bit muddled, didn't really check again, and certainly was a bit lax about my maintenance dose intake (should have taken 2000 a day it turned out but the Gp never spelled it out to me after I left original private endo and Gp took over my care and an endocrine clinic.. The same endocrine clinic let my TSH rise again, without really checking that it was back down to 1.o over several years it rose up to 5, which was considered normal by the GP for some stupid reason . I insisted on going back to endocrine clinic whereupon a NEW consultant told me that I really should be down to 1, having already been had a raised TSH in the initial diagnosis. And to bump up my vitamin D. So my levothyroxine was increased to 125 a day, compared to seven years ago when it was 100 a day and only 50 at weekends!!!

Gp was not aware of these guidelines, endo was.

It begs the question of why the endocrine clinic let my levels rise without questioning it, when the guidelines were apparently not to let the level go over 1. I think the guidelines have recently changed. That is my only take on it.

I feell much better, still a bit tired, but quite energetic these days.

It's not just women. My df has a constant battle to get the right prescription to manage his hypothyroidism. Successive GPs cut the dose, always to his detriment.

Something this thread proves nicely is that people value things more if they have to pay for them.
And yes, there are conspiracy theories here. NHS deliberately keeping women unwell? I’ve heard it all now!
I’m hiding this thread, it’s too crazy and depressing.