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.

My gut feeling is that loads of people (women) are being fobbed with “fibromyalgia” and FODMAP diets instead of being properly investigated. Fibro should be a dx if exclusion, ie everything testable ruled out first. But, hey, it’s cheap to just say “Fibro” and print off diet sheets.

I self medicate with NDT. It is so much better.

Generic levothyroxine is relatively cheap, I don't think that's the reason at all.

It is shite though.

Sorry about your plight OP. My sister in law also had thyroid issues for years, and was repeatedly dismissed here in the UK. Shortly after emigrating, she was diagnosed and treated and had the care she had been desperate for so long. It is dreadful, but just another sad reflection of our sub standard health care system.
We have been having delays & issues regarding our daughter’s diagnosis (non thyroid related) for 8 years now, and I truly despair with the system we have here sometimes. It is appalling on so many levels. I would rather pay directly for medical care, and have an outcome that makes our lives better, than pay indirectly through the nose, for a service not fit for the century we are in.

Urgh, I rang today to ask my actual TSH levels from March and they were 1.6. So back to the drawing board on why I feel like I'm dead, my hair and scalp are so dry, I'm gaining weight rapidly (especially around my middle) and my body aches, all day every day

I felt ill at 1.6 too. It's because TSH on its own is nonsense.

Brenda that is a perfect example of the NHS spending a thousand pounds to save a fiver.

I have been diagnosed with fybromialgia. I have had fatigue issues since I was a teenager.
Being diagnosed with fybromialgia really does seem like a get out of jail free card in terms of GP's, consultants and the NHS.
My mum is diagnosed with hypothyroidism, but my blood tests always come back within normal range.
Another issue I have been struggling with is my voice, for over two years.
I saw a consultant in October and was prescribed with anti-reflux meds.
When I discussed that recommendation wirh my GP and how I wws pretty sure thay that wasn't the problem, I was completly dismissed by the GP.
My work involves a lot of phone calls, which is hard going with my voice and fatigue issues.
Anyway I work for thw NHS and on Wednesday my bosses boss picked up on my voice issue, she then got me into the system asap and today I saw an ENT voice specialist, who basically diagnosed my problem and recommended treatment as soon as I was in the consultation room.
If it wasn't for my bosses boss intervention, I would have had another month of undergoing treatment that would do bugger all for the actual condition I have now been diagnosed with.
The issues I am having with my voice are very readily apparent but the other issues I have (fatigue, brain fog, painful joints) are not something that can be picked up on easily.
Which leads me to believe that for those issues, I am being fobbed off. That there are treatments out there but because these issues are not readily apparent, they get dismissed by drs and consultants.
My current diagnoses are:
Fybromialgia
PCOS
Bi-polar disorder.
My gut feeling is that these are all linked on some level but no one in our current medical system can join the dots and get to the root cause of these issues.
And I am pretty sure that all these diagnoses are linked to myself being female, being vunerable to stress and hormonal problems being the root cause of it all.

Queen Arachnia - there are other possibilities to test for such as coeliac and polymyositis.

To the poster who said 'My gut feeling is that loads of people (women) are being fobbed with fibromyalgia” and FODMAP diets' I disagree, being told to follow a FODMAP diet is progression and acknowledgement of an issue and not being fobbed off. In fact it's really quite a major step forward into something that's been grouped as IBS for decades.

I've always had issues with pretty much every food you need to exclude on a FODMAP diet. Family, friends (and doctors) used to ridicule me when I told them 'healthy' and natural foods like apples, watermelon, avocados, cauliflower, prunes, cherries, beans and lentils (to name a few things) made me unwell and caused numerous gut and digestion issues, and often made me swell up to look like I was 9 months pregnant. But now research has proved it's the natural sugars in these foods my body struggles to process/reacts to, I feel vindicated and correct in my insistence all along.

What doctors need to stop fobbing people off with is an IBS diagnosis. IBS is an umbrella term for a range of issues that they don't understand or know how to diagnose, so label it as this and give generic, and often useless advice. The eat more fibre advice might work for a few people but will make many (including me) far more unwell. I remember in the 90s when peppermint capsules were deemed the magic cure all, they did nothing for me or anyone else I knew it. (It was back then I took matters into my own hands and avoided all the foods I knew were making me react and started with probiotics. Result? Greatly reduced/no symptoms to little or no issues.

I recently started having a lot of pain and bloating again and couldn't understand why as I'd been so careful with what I'd been eating and was at my wits end. My GP sent me for a scan related to something else entirely and I discovered I have several uterine fibroids, thus explaining the bloating and pain that no amount of dietary changes had reduced/resolved.

US researchers think FIBRO is to do with inflammation and weight. Again it's another massively misunderstood illness that seems to effect mostly women that the NHS don't know how to deal with. Or how to treat, I think because maybe it's a result of something else that's going/not functioning correctly.

I also think the NHS needs a radical overhaul of their 'eat right' plate and a lot of their nutrition and dietary advice (particularly the way type 2 diabetes are told to eat). No one needs that many starchy carbs. But that's another story altogether.

thread hijack over

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My mum had an underactive thyroid for years and was still permanently tired, had thinning hair and was very overweight. We ended up takung her for a private consult with GP in Birmingham who specialised in thyroid. He went on symptoms not just blood tests. After appointment he wrote to my Mum's usual GP advising incremental increases to her medication. Within about 4 months mum had gone from size 18/20 to size 12 and had loads of energy. Several months later, after another routine blood test, normal GP decreased her meds snd, guess what, wait started going back on.

I think that the NICE guidelines often reduce GP's exercising professional judgement and reduce the role to box ticking.

I totally agree with you that if men were affected then it would be taken more seriously.

BTW, my GP is absolutely fine with what I take, and even tested my Ft3. My tag is under 1 because I am taking T3.

TSH

@QueenArachnia if you have B12 deficiency, I'd lay bets on that being insufficiently treated and being the cause of most of your issues. It's another area where patients are not treated according to symptoms but by a range that is set too low and a treatment regime which is woefully inadequate based on no clinical research.
Have a look at the pernicious anaemia society website. I have been driven to desperation by my GPs refusal to consider increasing treatment so now source B12 and inject myself. It has a lot of similarities to the thyroid issues people are describing here. I am ignored and dismissed by GPs, who are bizarrely keen to suggest antidepressants but who will not increase availability of a cheap vitamin injection.

Very interesting thread.
I've been diagnosed with M.E for years, piling the weight on and I'm absolutely exhausted.

My tsh is 2.6. My gp says that's absolutely normal though.

It's the same with vit b12 and vit d deficiency. Nhs guidelines are not optimal and many people misdiagnosed with fibro, me or ms.
Excellent support groups on facebook with details of the best supplements to take along with cofactors.
Op you don't need a prescription for vit d, prescribed vit d is not the best stuff to take and you will also need soy free(because of your thyroid) vit k and magnesium

StellaRockafella - do you have a link to the US stuff about fibro? I have a fibro diagnosis which I'm not totally convinced about, but some actual research info would be very helpful (to counteract the "take these painkillers" advice I'm getting here in the UK, nice as the painkillers are ).

Thanks for this post OP. I agree with you absolutely. There was another looong thread on this a couple of years ago, which is worth a read if you can find it. I said at the time that I thought MNHQ should get behind this.

It took me five years to get an endo appointment, four years and fourteen appointments later, the only diagnosis I had was CFS. After doing a lot of research, I managed to manipulate a GP into giving me Levothyroxine and my life changed overnight, literally overnight. He was happy to increase the dose as necessary. Then he left and his patronising replacement started reducing my dose. Before he put me back where I was before, I started self treating. That was three years ago and I have never been fitter. In my Sixties I have more energy and stamina than I had as a teen.

Interestingly, symptoms I had since I had Glandular fever at seventeen have now completely disappeared, so it looks as if I may have been hypo for forty years before I got treatment, but because my TSH stayed within the reference range, although FT4 and FT3 were right at the bottom of their ranges, I was told I was depressed.

Things need to change and soon.

Am following this. Diagnosed severely vit d deficient but once my levels went up was then ignored, symptoms came back and GP would not retest, so I started self medicating vit d as I knew that was the issue, constantly borderline anemic even when taking supplements, GP' have sent me for 3 lots of thyroid tests in 3 years after losing loads of weight and my hair is falling out, constantly exhausted. I recently asked for copies of my test results as I was convinced it is a thyroid issue. But ironically have been too unwell to even look at them yet, I used to have energy, now i just sleep and feel constantly exhausted and keep getting infections. It feels like my body has just given up. Please would you inbox me the private consultant in London. I want my life back, this has been going on for 8 years since I was pregnant and have had so many health issues during this time, was persuaded i was depressed, was so desperate to feel better I tried them, they made me worse, the only thing I feel depressed about is that I constantly feel unwell and have no energy, and I cannot seem to get anyone to join up the dots.

I've been feeling quite awful for a while now with non-iron deficiency anaemia, my ferritin level was 7 at one point, I was put on iron tablets. It raised to 18 so they signed me off iron tablets. However for me, the reality is that 18 is still on the low end of normal and I feel horrible, so now I'm self-medicating but still feel horrific. I've had TSH of 1.6 so been told my thyroid is fine, and at one point my calcium was low and they just told me to take Vitamin D to build it up.

I'm at a loss what to do next. I understand the NHS is cash-strapped but does that mean I should feel this bad indefinitely? :( I can't afford to go private.

Given there is an obesity crisis that the NHS are trying to tackle, and that having an underactive thyroid makes you put on weight . . . why don't the NHS consider adopting the aforementioned practice of other countries and prescribe medication for underactive thyroid at a lower threshold.
Surely it would cut obesity statistics a little?

Actually can I recommend the forums at healthunlocked.com to everyone having an issue? I just recommended it to a couple of people by PM but a lot of you could find fellow travellers there.

Totally agree Balloon - treat everyone with a TSH of over 2.5, that would definitely help the stats!

Women are routinely told to get on with it in all manner of medical stuff. Period problems being the main one. I’ll never forget my ex going to A&E with a bog standard stomach ache and being treated like he was dying. I mentioned it to a doctor and he said “men his age don’t exaggerate pain or come to hospital if they don’t need to”....presumably he felt women do ffs!

This happens in Australia too unfortunately. I was in a car accident where I was taken to hospital in an ambulance. They tried to help me walk from the car to the ambulance but I simply couldn't bear any weight on my left foot at all. It felt like it was broken and I was in lots of pain. I told them I had alot of pain in my foot and leg but the paramedics looked at me and said it doesn't look broken. They wouldn't give me any pain relief (I don't know what it's called but it is a green tube with pain relief that you inhale. They gave it to my now ex when he complained of stomach pain). To cut a long story short after having X-ray then waiting 5hrs for doctor to look at X-ray I was finally given pain relief and told that I had three broken metatarsals (bones in foot). I had earlier expressed I was in a lot of pain a few times but was refused pain relief. And was looked at like I was exaggerating. I was left alone in a small room for 5hrs with nothing to read, no TV nothing to do while in crap loads of pain. Tried to get a nurse to help me to the toilet by buzzing, no one came. Waited until I couldn't wait any longer. I tried to hop to the toilet, made it, but fell hopping back to the bed. Was told off for getting out of the bed. When my ex was taken to hospital with stomach pain he was treated way better than I was. Was given pain relief in the ambulance and immediately at the hospital and was basically looked after like he was a sick little baby.

P.s sorry about so many of pp and Op not getting properly diagnosed and proper treatment. You deserve so much better.