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 mum has a goitre. All her bloods came back normal until she pushed and pushed to see a specialist. Turns out she has hashimotos. The thyroid blood levels really need a serious review

No help I'm afraid but I have a similar level to you and am in the same position. Have been arguing with my dr for years and even changed gp surgery over it, not that it helped.

I’ve just got my levels back today, 1.36. I don’t know if this is good or bad as I’m new to all this. My previous result was borderline.

Is it possible to get a private script and just pay for the levothyroxine?

I completely agree, i put on several stone in weight, had to drop to part time work and barely managed that, had permenant secondary hypothermia and it started to affect my breathing (due to a large goitre). I now buy my medication online from cyprus and bulgaria (its expensive!), my weight is dropping, my goitre has shrunk, my breathing is normal and I work full time. But according to the nhs there was nothing wrong with me and I didnt need treatment...

And I think you are right about it being women, my dads blood test results were much closer to normal than mine and he got offered treatment immediately, my first GP told me before I had blood tests that he was very unlikely to diagnose me with thyroid problems because I had put on weight and "all women want to use their thyroid as an excuse for putting on weight"

After struggling for years in the UK, I moved to another EU country. Not because of the struggle, mind you.

It took three weeks to be diagnosed and treated. I was... flabbergasted.

New GP here during the "get to know you visit"saw my eyebrows, noted my weight gain and asked me about fatigue. Sent me for blood tests and then on to an endocrinologist. Treatment commenced within 3 months of moving country.

cat 1.36 is about the ideal level for TSH apparently, once someone is diagnosed and treated they are advised to keep their TSH under 2.0 but you can have a level of 9.5 and be considered normal. It’s insane. But ideally you need to know your other levels too, most people have to do this privately, there are companies online for this.

If the GP won’t help me now, my next step is finding a private endocrinologist who knows their stuff. I am sick of living like this. They diagnosed me with ME and now fibromyalgia, but my results today showed serious vit D deficiency which is most likely contributing.

I’m just so angry. If I lived in Europe I could get treated properly now. I don’t know how this is allowed to stand.

How do you get your levels monitored Eliza so that you know how much to take?

So sorry you’re all struggling

Eliza I’m not surprised. Mine said “everyone would feel better with levo but they don’t need it”. My answer was “if they didn’t need it, they’d feel worse, not better”

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

I treat myself and haven't felt so well for years. I now function the same as a normal person does. I think it absolutely stinks I really do, and wonder how many sluggish obese depressed women with heartburn and fibro symptoms would benefit from proper treatment for under active thyroid. I could rant on this, but I don't think anything will change so long as the British Thyroid Association continue on their current track. Until they change position it will all remain the same, as they are supposedly the experts.

I’ve been self dosing with large amounts of vitamin d and I feel a lot better now.

It is a disgrace though, I agree.

I wouldn't bother you are just a hormonal women moaning about health problems you should just getting on and coping with quietly rather than bothering people and taking up GPs time when they could be treating real illnesses.

That goes for menopausal women, PCOS suffers, anyone with birth related injuries etc. Just stop your whining.

In all seriousness though OP you are absolutely right and it's disgraceful that this is being allowed to continue. When people say we don't need feminism any more I always wonder if they really understand how low down womens health is in the priorities of a supposedly enlightened and developed society.

Okay, so what do you have to do in order to get treated privately? Monitoring and prescribing costs? My mother was hypothyroid and I’m having symptons now that I’m getting older.

Oh my goodness I'm having an epiphany ( might be wrong word). I'm always tired, my brother who's a Dr told me I have something that looks like I have goitre. My GP said my thyroid results are borderline.

The problem with trialling levothyroxone yourself is you need blood tests to check your dose is correct.

That's not been my experience. I was diagnosed and treated after a blood test came back with tsh of 5.7.

I’m going to need A LOT of vitamin D (currently 19.9, ref range 50-200) and for that level I’m going to need a prescription. I’ve had crippling foot pain for most of the last year, fobbed off as fibro and a bit of scar tissue. Now I have the Vit D test results back im wondering if I actually have a fracture.

I think this is very important, thank you for pointing out the disparity with other countries. Is there a NICE guideline for this issue and is it due for a review?

soulrider you’re very fortunate - that’s usually not the case at all! You must have a very good GP

Grandma ask the practice for a copy of your results or if you wish you can do a private test - I’ve used Medichecks this time, they’ve been very good, just takes a finger prick at home then post off your samples.

If someone is going to self medicate, they’d need to be able to find a source, and afford regular private blood tests while adjusting the dose. It’s an utter disgrace that people have to go to these lengths.

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

BrownTurkey here are the NICE guidelines for Subclinical hypothyroidism (ie where TSH levels are between 4.0 and 10.0)
cks.nice.org.uk/hypothyroidism#!scenario:1

This is so interesting! I was diagnosed as ‘borderline’ by a GP years ago but was told nothing should / could be done about it. When I was trying to get pregnant a different GP had me tested and immediately put me on levothyroxine. I’m now on the medication and I believe it has made a huge difference to my well being. I don’t know what my levels were the first time I was checked but I’m annoyed it was initially dismissed.

Mine was .1 decimal point over the lower limit. GP said it was fine.

The weight loss, palpitations, hot flushes and manic feeling is all psychological

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!

I monitor how they used to before the tsh test was invented, I monitor my body temperature and my symptoms. The inventor of the tsh test actually said it wasnt as reliable as monitoring body temp etc.

I was actually misdiagnosed with ME for years, even though it was thyroid problems

I also have pcos, I actually have no idea if theres any treatment for it, the doctor just told me I had pcos and between that and a congenital uterus malformation I would be very unlikely to have children and sent me on my way with no further information. Ive soent so long trying to improve me thyroid, as stupid as it sounds I've never properly considered whether pcos could be treated

I have had similar problems. 6 years ago, I was told my levels were too high (I had thyroid cancer and the whole thing removed in 2 separate operations despite me telling them to take the whole thing first time. My dosage was dropped and i became symptomatic almost immediately. I then battled for 4 years to get them to put it back up. I had every single symptom going. Then another jackass GP cut it. I went back at the turn of the year, as my symptoms were awful and was told, as i always am, that my bloods were fine. I complained and was sent to the endo. He has given me what i wanted, and put my dose back up, but he wasn't interested in my symptoms. It is all my age (I'm in my 50s and yes, I am menopausal). He didn't listen to the symptoms that show my T4 isn't being converted properly. He just dismissed me, because i am a middle-aged woman. And I was also told the treatment that I was given when i had the cancer was wrong, as I shouldn't be kept over active, I should be under active. When i said about feeling the cold etc, I was told that was normal and it wasn't a problem. So, wearing a woolly jumper in 80 degree heat and still being cold is normal! Luckily, my GP are idiots and when I ordered more tablets, they didn't just give me the extra ones i needed, they gave me everything. So, I am happily over-medicating at the moment and the majority of my symptoms have disappeared and the others have improved. It clearly isn't just my age. I am seriously considering self-medicating from now on, buying it on the internet when I can.

It is disgraceful that because of my age, I am not being listened to. I know my own body - I have been without a thyroid for almost half my life, yet I know nothing.