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.

I do understand your frustration totally as am in the same boat. I go from being convinced that my issues are due to a specific physical problem to thinking that it's my mind that is not in the right place. I mention stress but depression works in the same way.

The thing is you don't know yet that all your symptoms are due to hypothyroidism or that only but yes, I do get that not giving you the chance to try is utterly disheartening.

The problem is the more frustrated you are, the more flustered you come across and the more likely your GP is to think that it is your mental causing you your symptoms.

I feel utterly desperate much of the time
That alone is the worse stress you can find yourself under. I too am desperate to get better. Every day has become about making it to the end, being relieve that it is time to go to bed, even though my sleep is appalling, waking up wanting to cry as feeling so awful but putting a semi happy face on for the sake of the family and starting the count down to the evening.

I really do hope for you that you'll get your GP to agree to medicate you and that it will indeed make you feel back to your own self.

YANBU but I've come to the conclusion that whilst the NHS employs a lot of dedicated, fantastic individuals (as seen on Hospital and Ambulance) it's a shit service for most people (and probably disproportionately a larger amount of women because our endocrine systems seem more complicated than those of men). DH suffers from kidney stones and the last few years have been an endless round of pain, going to GP, being referred for stone blasting, blasting being cancelled on the day or being done by guesswork because the Xray machine isn't working, being referred back to GP to discuss results (sometimes the Xray results haven't been sent so GP appointment a waste of time) antibiotics for kidney infections, referral to consultant to discuss non-existant Xrays etc. etc. etc. for ever more.

I don't think GPs should be the gatekeepers for medical care, I just don't think they have the knowledge. A French friend told me that in France if as a teenager you have period problems you are referred to a gynaecologist basically for life - if they are also an obstetrician they'll likely care for you in pregnancy and then you'll see them for problems with the menopause if need be. None of this having to go through a GP each time. As a family we have private medical insurance but if we wish to use it we still have to go through a GP.

The NHS cannot afford to treat stuff that affects quality of life but no-one has the guts to tell us this.

YANBU but I've come to the conclusion that whilst the NHS employs a lot of dedicated, fantastic individuals (as seen on Hospital and Ambulance) it's a shit service for most people (and probably disproportionately a larger amount of women because our endocrine systems seem more complicated than those of men).

That’s been our experience the last few years too. I’m so sick of having to wear GPs down with requests that they maybe, possibly might want to consider following NICE guidelines. Or even test for obvious thing X.

I don't think GPs should be the gatekeepers for medical care, I just don't think they have the knowledge

This. Why have they got so much worse? Is it more locums? Less reading? Different training? Or is just the obvious reluctance to test, refer or prescribe that you’d expect from fund holders?

I think that this probably is quite common with the NHS (other diseases too) and I think it gets swept aside in the debate over NHS due to political bickering and partisan politics.

I don't think it's a anti-women thing but rather endemic of the NHS being too restrictive and bureaucratic. You see a lot of thread on here about the NHS and I don't think it's a financial issue either.

But this is one of the few situations where a competing private sector would help the situation out. If your provider isn't doing the right job then you walk way (as in many European countries) to one that does.

I agree with you. All the stories here sound so sadly familiar to me.

I was diagnosed with hypothyroidism and endometriosis after 5+ years of being fobbed off by my GP with lines like "all women have painful periods" and "we all get tired from time to time" and "some of my other patients have things much worse than you but they don't ask to see a consultant"

I've taken prescription painkillers for period pain since I was 14 (was diagnosed when I was 30!). At the time I asked for the referral, I was missing work on 2-3 days a month because of extreme period pain and flooding pads etc. I found those lines from GP inexcusable whatever the situation, but it seemed worse because she was around my age ... at my first appointment with the consultant, he said they would have to do the tests to confirm but my symptoms were classic endometriosis. Sure enough, it was! I got the Mirena fitted and thank god it is working ok for me. But I'm so angry that the GP kept fobbing me off and yet was happy to write prescriptions for painkillers. It isn't "normal" to be in so much pain that you miss 2+ weeks of work a year for periods and they didn't even discuss options with me. The worst thing is that after every appointment with that GP, I was undermined and left feeling that I was making a fuss over nothing.

My hypothyroidism diagnosis came around the same time. I switched GP and my new surgery are much better at listening to me but the doctors don't seem to know anything about it beyond the NHS guidelines. I find that I have to tell them what I want rather than them being able to help.
It has taken 2.5 years for me to get the 'right' dose of thyroxine and that is only because I've been insistent (my GP wanted to out me on the annual checkup program after only 6 months of taking thyroxine. The blood test after that showed my TSH at 9.6!) I've also spent £££ on private blood tests and on supplements.
I still don't feel 'normal' but I'm much better than I was last year.

Following this one as i have hypothyroidism.

Wren I’m glad you are finally starting to get things on track. I’ve been on opiates for 10 years for endo, six surgeries, every hormone treatment going (including one that seemed to kickstart my symptoms that match hypothyroidism).

I just want the opportunity to try and feel better, I don’t think it’s too much to ask after struggling for so long, and I think my results now warrant it. Will see what the GP says in a fortnight. If he’s not forthcoming then I’ll have to try something else. I was resigned to it, but now I think fuck it - this isn’t right, and I’m sure the doctors themselves wouldn’t be willing to live like this. In fact, mine told me about the wife of a colleague who had all these symptoms and was eventually found to have severe thyroid issues despite “normal” TSH - the reason I keep going to him is that, although he’s not knowledgeable in this area, he does at least seem to understand that it’s not as straightforward as many think it is.

This also happens a LOT with conditions such as ASD and ADHD which are historically considered to be mostly affecting males. Whilst there are some fantastic doctors out there who recognise that women present very differently, far too many just go down the traditional male checklist and dismiss women out of hand. They are then very quick to hand out the anti-depressants, which treats the symptoms, and not the cause.

Even if you manage to recognise yourself what the issue is, you're lucky to get a referral. And if you get a referral (as I had a nice GP) you have to wait at least a year usually. Then, unless you're lying in a ditch (their words) or you get a more forward-thinking female-presentation-understanding doctor, you're told you don't have it. I even gave them ten sides of A4 describing how I matched the DSM criteria, but they didn't even read it as far as I could tell. It was suggested I take up yoga.

Being knocked back like that officially, thinking I was just a lazy failure after all with no other explanation, caused me to tip over the edge and need those damned anti-depressants that I'd been fighting against for decades. They just made my problems worse, but I cared less, which made them even worse again.

Fast forward a bit, and I thought I'd try again privately. Recently I was finally formally diagnosed with ADHD (inattentive type) by a very experienced NHS doctor who has a private practice. Now I'm on on stimulant medication which has turned my life around, just as I hoped it would. I've just ditched the anti-depressants because the root cause (massive underachievement, fatigue and brain fog) has lifted, and I feel so much more positive than I have done in decades.

This incessant need to treat symptoms, obviously including thyroid issues, with anti-depressants rather than the root cause is surely costing more in the long term, not just to the NHS, but the wasted, incorrectly treated lives of women who could have done so much more with themselves. It makes me so cross.

I’m so sorry shattered - I’m so sorry for everyone here who’s experiencing this, and I’m angry too. I’m especially angry at the one GP who popped into the thread to tell us all that we were stupid and ridiculous before disappearing - maybe if GPs read things like this thread with an open mind, things might start to change.

I wish we could do something but it feels impossible to change it.

Two years ago I felt extremely tired, low and just not well at all. Thought it might be the Thyroid as I know my mother and grandfather suffered from Thyroid problems.
Blood tests showed "normal" but extremely low Vitamin D and borderline Iron. Thyroid levels were "normal". After reading this thread I wonder if they were "UK normal" or "normal normal", iyswim.

My sister lives in our home country and had a blood test when signing up to a new GP practice after a move. Thyroid levels were included as a routine and she was told that her they were okay, but just about and that she needed to keep an eye on them, especially if they wanted to TTC.

So far all the GPs I had over here were quite dismissive, didn't listen and tried to get me out of their office as quickly as possible I have never had the allotted 10 minutes for an appointment, the longest one was 6 minutes.

Hi, watching this thread with interest. I had a biopsy on a thyroid lump In March which they initially thought it was a goitre. They found this whilst investigating enlarged lymph nodes. The results were inconclusive and I have to have another biopsy done later this month.
I just want to ask if a goitre automatically causes a thyroid imbalance?
I have been feeling constantly drained and put on quite a lot of weight. I keep telling the consultant this but they don't seem to take it on board.

Sink girl I don't understand that link re pcos and metformin. You said friends take it (I used too), but that nice thing doesn't seem to think it's any good compared to cy.. The c one

? Am I interpretation that wrong and is it the c one a pill?

My eyes have gone really watery and I have intermittent lump in neck. I am having scan in June. I went to docs about this in January. No other tests offered yet. No weight gain.. Jowls have appeared though. Also feel very breathless sometimes but I am unfit and have pcos

I asked my GP about tests as I seem to have many of the symptoms of hypothyroidism. I was refused testing because 'your speech isn't slurred'.

Oh my goodness. I have just been and looked up all the symptoms that can indicate hypothyroidism and almost all of them apply to me. I wonder if the chills I keep getting are related to this? I have these weird episodes where I start feeling colder and colder until it's unbearable and shivering uncontrollably, so much that my neck really hurts. As for the constipation, depression, dry and scaly skin, acne breakouts, tiredness, sleep problems, weight gain, light sensitivity, gritty eyes, increasingly poor memory, tinnitus, irregular periods, thinning eyebrows, muscle weakness and so on listed here... this is me. Wow.

what nonsense about the slurred speech. I never had slurred speech.

However, I did get periods of forgetfulness/brain fog. Could that be a symptom that is similar to "slurring" so you could persuade your GP?

In fact I was far from slurred, I was voluble, excitable, tearful because my forgetfulness/ineptitude was making me very upset and panicked!!!! My periods were never irregular either nor did I have acne, nor did I have gritty eyes or shivering uncontrollably. Yet I was still diagnosed after a blood test with a very high TSH of 15, and subsequently they found antibodies consistent with Hashimotos

Ankasi your vitamin D levels and iron - did you correct them and still have symptoms? That is the key. You need to look at all the reasons for the symptoms not just one. Did your GP give you a loading dose for Vitamin D and retest your levels a month or two later to check things had improved?

I'm concerned that too many people are just thinking there is just one cause, there might be many, iron folates, vit d b12, leucophil count might indicate infection, liver inflammation, blood sugar, rheumatoid factor.

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've actually been concerned I have cancer or something I feel that shit, but I've talked myself out of that one by thinking I wouldn't be gaining weight :/

Those could conceivably be B12 deficiency symptoms megafat.

Megafat hugs to you - I know that feeling well. Did they test your other levels? Unfortunately TSH isn’t the only indicator. If you could afford to, you could get some private blood tests done (had a full thyroid panel and various vitamins for £79 so not crazy money) and then you’d have a better idea of what’s going on

I had what was previously diagnosed as IBS for years. I won't go into too much details except to say I was on immodium and amitripritiline daily to relieve my symptoms, with minimal effect. The symptoms were getting more frequent and absolutely distressing. Eventually, I went back to my GP practically in tears, I was having to have frequent time off work and the shame was incredible. I was referred to gastroenterology who gave me scans etc which showed I had a massive fibroid, over 20cms long and too big to treat with anything bar a hysterectomy, which I had done. By the time I had the op the fibroid was the size of a 7 month pregnancy.

Both gastro and gynae said the fibroid could not be causing my symptoms.....but lo and behold since the op, I have been symptom-free. To this day I believe it was pressing on a muscle or a nerve, causing my symptoms.

About 7 years ago, practically all my body hair fell out. Since then, I've no hair on my arms or legs, and very sparse eyebrows, lashes, pubic and underarm hair. At the same time, I was diagnosed with depression and had severe eczema. I joined up the dots and asked for a thyroid test, supposedly all came back clear. While I was waiting the op, the hospital did bloods and told me I had hypothyroidism but when I said it to my GP, they're like ''no you're fine'' .

Last Christmas I has routine bloods done at my GP (MOT for the over 40s I think). Can't remember the figures but my TSH was raised and T4 was in lower end of normal. Had them retested a few weeks ago...now all the numbers match their description of underactive thyroid and I'm now started on 25mcgs and I've had a blood test today for assessment of response.

I've had many symptoms for several years (weight gain, difficulty in losing weight, tiredness, feeling cold, brain fog, dry skin, hair loss) but I do wonder now if the figures they were wrong. I've also got a strong family history (mother and maternal aunt.)

Sorry the reason why I included the story about my fibroid was to show for years I was fobbed off and given meds for the runs. I'd had checks about 15 years before which ruled out cancer/Crohn's etc but then told ''it's just IBS.'' I had to put up with the symptoms for several more years causing me so many problems before I was referred back for further tests which showed my symptoms were caused by something that wasn't considered (and they were still telling me wasn't the cause of my symptoms!!!)

If you are 100% sure this is the issue can you go private just for the appt and to get the script as others posted ? I completely appreciate it might be beyond your means but I don’t an appt and test would be that much ?

Then when you feel stronger tackle it with your local team at NHS level with the diagnosis

Do you know the name of the medication needed and the costs ?

Stop that’s my current back up plan - will see my GP in 2 weeks with these results and ask for help. In the meantime I’m researching private endocrinologists who specialise in Thyroid issues. I had to do this when I was first diagnosed with endometriosis - had to pay for a consultation with a specialist who then wrote to my doctor instructing on treatment etc. It’s sad that people have to do this but here we are.

Ooh, just found this which is INFURIATING

“According to endocrinologist Prof Tony Weetman, one of the expert witnesses testifying against Skinner, the reason these people’s blood tests come back as normal is because they aren’t hypothyroid but are suffering from a “somatoform disorder”, meaning symptoms are psychological.”

www.telegraph.co.uk/news/health/alternative-medicine/10985192/Could-a-renegade-doctor-save-your-life.html

Riiiight... except that many of those people DO have abnormal test results because they are outside the normal range (isn’t that the definition of abnormal?), and would be treated almost anywhere else in the world.

But all those people (or should I say, mostly women) are really just mentally ill? DFOD.