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 can understand people saying that you shouldn't self-medicate because of potential side effects, but since proper investigations aren't being done because you are a woman, what other choice do you have? You can't go around feeling like crap and falling asleep at every verse end. You have to have a life as well. I have been so much better since I have vastly increased my dose, thanks to the GP getting a prescription wrong, and I am dreading coming back down.

I have been suffering with this for over 20 years. When I was first diagnosed, nobody even bothered to tell me that I had thyroid cancer! I was quite young and had a new baby, so it didn't occur to me to ask more - I had enough on my plate. I had 2 operations, as they only took the tumour the first time, and after the second operation, I couldn't even hold my head up because the muscles were so damaged. Nobody offered me physio - I taught myself to hold my head up again. I also had a massive hematoma on my voice box and could only whisper for 6 weeks. Nobody bothered to check on that, either! I had one GP who listened to me and was happy to ignore the blood results, but I can't guarantee to see him, assuming I can even get an appointment. The endo I saw a couple of months ago couldn't have been less interested. He dismissed my symptoms as menopause (funny how they have all disappeared since upping my dose) and was more concerned to tell me that the treatment I had received 20+ years ago was not the way they do it now and I have to be weaned down to as low a dose as possible, even if I have horrific side effects. Wearing a jumper in 80 degree heat? Perfectly normal. Permanently exhausted? Its my age. Losing hair, unable to grow hair, eyebrows vanishing, dry skin and eyes? Normal.

Don't get me wrong, I think the NHS is a great institution. I would not be able to afford to get my meds if we ended up with a private system like the US. I would become more and more ill. But there are times that it fails and this is one of them.

After my first thyroid op, my then husband had a vasectomy (same surgeon and anaethsetist as I had had the previous week). I got sent home with 4 cocodamol tablets after a major operation and a week in hospital. He was in less than 4 hours and got sent home with a week's worth of the same tablets, same strength. He didn't need them, so I took them.

(Just an off topic issue in a way can I just add that the original poster says she has found she has very low vit D as do lots of people in the UK. The best way to get that is sunshine (not pills or even food) so do everyone however healthy try to get outside in the sun without sunscream just for 15 minutes in the Spring/Summer. Obviously not too long or you would burn but it's a simple thing that does not cost anything and it might help some people.)

Strax- I know that’s the treatment but who cares what the cause is hey? Nobody mentioned PA or IF - these are things I only know from doing my own research- my GP obviously thinks it doesn’t matter if I’m ignorant about my own body. They will decide if and when I get any treatment and I should just be grateful and not ask questions.

When I read that it is mainly heavy drinkers and vegetarians that get this it makes me wonder why I have it, as I am neither. I would like to know what’s happening in my own body to cause a potentially very serious (pernicious in fact) condition.

Yes
I have feibrods and struggled for years passing out with pain so much blood agony

And they were 2cm when I first whent to see gp sex was painful told have Anel ovulation was painful told nothing to be done later come to find out they could of been lasred off or tablets that shrink them could of been given
Fast forward 10 years they grown to 15cn I looked like I was 6 months pregnant permanently and pretty much had to be hospitalised every month ended up having full surgeries to have them removed doctor said why didn’t they just laser when small

It seems all they want to do is give me a chest x ray and ask if my bedroom is too hot.

Sigh. Yeah there is definitely a lack of will to really pinpoint WHAT the root issue is. Assume they were trying to rule out latent TB there?

I have had a really tough time both pregnancies and my husband has I think realised that ‘yes, men would never be expected to cope with that.’ It is an eye opener.

High prolactin can have no obvious cause so it’s not 100% that they will be able to give you a cause but with drenching night sweats they should be looking at a very thorough full blood count and a check of your pituitary after they’ve ruled out the simple causes.

After my first kid was born I had rheumatic type pains, joint issues, far more hair loss (for years) than was normal and just exhaustion that was beyond the new Mum level. I’m pregnant again now and have HG again (which sucks) but after this one is out if I get similar symptoms past the ‘hormones settling down’ stage I’m just going to see a private specialist. I’ve gone from being able to run ten miles on a weekend and do half marathons without training, to struggling with the stairs. It’s not normal and I want to be as fit and healthy as I can. Something is a bit off somewhere and I suspect it’s something that’s easy to fix.

I hope you get some better care. Be polite but be firm.

On the vitamin D issue. There was a very informative thread a while back with a contributor who was an expert in that field of research. Her advice was not to waste time and money on testing just to take supplements if in doubt as it overdosing is not likely at normal doses

@Bowlofbabelfish you're quite right of course, but try persuading most gps to take anything seriously enough to do that.

MyRelationship fair enough if the GP never actually explained to you what the likely cause was, that's pretty crap. I've also found that no GP has ever recommended taking a folic acid supplement but you need folic acid to utilise the B12 and I feel much better taking a high dose.
If you have PA, isn’t it liver (?) that should be checked more closely?
No, PA is an autoimmune condition which means you produce antibodies which destroy the Intrinsic Factor molecules in your gut. B12 has to bind to IF to be absorbed through your gut so with no IF you can't absorb dietary B12. There is no way to prevent this or get the IF back so the only treatment is lifelong injections of B12.
Excess B12 is stored in your liver in a healthy adult (hence the link to B12 deficiency in alcoholics) but this has no effect in PA.

Fair play to my go she’s not great with my thyroid but she did email the consultant yesterday re my fibroids and he called me this morning. June 5th. I’m terrified.

Yeah, my vit d is way too low (19.9 as of last week, when it should be 50-200). From what I’ve read spending time outdoors won’t cut it at this stage and I need a loading dose so I’m sorting that out now.

You’re quite right Strax. It was stomach cancer as a possible complication of PA, and liver disease as a possible complication of Coeliac disease, I was thinking of. I muddled them up.

But still worth identifying the underlying cause of the deficiency, as those are two of the possibles.

The thyroid surgeon initially misdiagnosed the cancer as a cyst. Then after the operation actually it was a ‘small cancer ‘ Only months later did I find out it was 4 cm.
A few years later I had a breast lump and during the scan my lymph nodes were suspicious and the breast specialist got a hold of the scan done on the thyroid lump And he was horrified. He said it was obvious a malignant tumor from the scan and he couldn’t understand how it was missed as it was also a ‘fair size’
When he booked me in for a lymph node removal (thankfully all clear) he actually put on my notes ‘the patient understandably has no faith in the medical profession due to previous misdiagnosed cancer’

Shocking US article.

broadly.vice.com/en_us/article/evqew7/obstetric-violence-doulas-abuse-giving-birth?utm_campaign=sharebutton

@Bowlofbabelfish - google ‘Sheehan’s syndrome’. Quite rare in 1st world countries but a few things you said ring some bells

Interesting to see Vince Cable raising hypothyroidism In Parliament
From his twitter feed-

Minister admits in Parliament that price of Liothyronine major factor in restricting prescriptions to treat #hypothyroidism. Promised to write to me with answers on why NHS does not investigate much cheaper imports from Europe. Sufferers need action now.

Best What needs investigating is not just how to import cheaper alternatives but how are pharmaceutical companies allowed to take medications that cost very little and ramp the cost up to such ludicrous levels that they become unaffordable and affect patient care

Couldn’t agree more Ivor

Hi I've just found this thread and can contribute a few things I've learned over the years (20 years hypo) but I'll have to come back to it later.

A quick skim - I agree with @Bowlofbabelfish 's last post.

I do think that as this is a mostly female issue, it's not taken as seriously and there's sexist bias. I posted this thread in feminism chat on this issue as the article describes my experiences in the past.

One thing mentioned on the thread and that's helped me hugely (to communicate with gps) is to learn the lingo and the biology behind it. I do look at research papers and the nice guidelines, including the linked documents. I also try to work with the gps and within the guidelines as much as possible. The T3 thing is a massive debacle and does need sorting out. But it's not straightforward- people aren't well managed on t4 as they should be. I'm lucky to be well on t4. However I was very unwell for a while and referred to an endo.

This was an normal nhs endo - and he did say some people need to have total tsh suppression on t4 to feel well, even below the range. I really don't - it made me worse, plus they decided to check for Addison's disease, which was great, I don't have it but the test did make me worse for a while. Looking back I think I had cfs caused by a range of issues post pregnancy including a phase of hypothyroidism and then over replacement. I was also later diagnosed with asthma and I think the frequent severe coughs and viruses I was getting played a part.

I have more to post about all of this but want to read the thread first - I will just say that you can have elevated tsh briefly through illness but also that low iodine and low iron status (ferritin) really can affect thyroid function in people not on thyroxine. A study on vegans found elevated tsh if they weren't on a multivitamin. It's mostly in white fish and dairy. Too much is also bad. Selenium is important too. And it's worth making sure vit d and b12 are v good too.

There's been criticism of the British thyroid foundation and British thyroid association for not supporting t3. I have found the BTF extremely helpful actually in the past plus they are the charitable wing of the BTA. I actually found out about t3 through the BTF as I know members who are on it.

However, as many people are turning to health unlocked etc and not informing the BTF of the t3 issues, they've not been able to feed back to the BTA. Imo it's worth supporting the charity and making these issues known.

The nice guidelines do say if you're borderline (around 4.5) you can trial t4. Also if you're ttc, tsh must be below 2.5. I do find this ironic but it's worth exploring.

Thread regarding medical bias against women:

Women and medicine: unconscious biaswww.mumsnet.com/Talk/womens_rights/3265339-women-and-medicine-unconscious-bias

Separate post that I'm extremely livid about and actually would like MNHQ to potentially do an awareness campaign about.

Women with thyroid issues, mainly underactive or borderline/ subclinical, who are ttc or in early pregnancy are still being failed by general practice.

With all thyroid issues, everyone is a little different. For example, I'm ok on t4 (as long as I do look after myself and keep strong; I have hyper mobility and am prone to tiredness anyway) but need quite a lot more in pregnancy whereas friends I know only needed a little extra.

However it needs very careful monitoring in the first trimester. The nice guidelines are clear that you refer to an endo; in practise this doesn't seem to happen. It's not generally a mw thing unless they're especially knowledgeable about it.

I have had a small fight both times I've been pregnant to clarify care (different gp practices) afterwhich it's been great - but I've been on top of reminding them about tests.

I'm still regularly coming across threads in the pregnancy section where women are confused or worried about care. I have friends who have had to push and query care in pregnancy.

This is something the BTF are very aware of and are trying to campaign for. Their guidelines are due to be updated soon.

As a separate note, iodine is also very important in pregnancy for the developing foetus, for their own thyroid health and brain development. The uk doesn't supplement food and it's mainly in dairy and white fish.

I have a very low TSH level, almost hyperthyroid.

BUT
I have a goitre and all the many symptoms of hypothyroid. Feeling the cold is the worst one. Tired, sluggish etc.

The GP won’t do anything for me. Says nothing can be done as my TSH is nowhere near hypo

This is so interesting to read. I had no idea this was a common problem.

4 times I've been to the gp to get my thyroid tested as since I've had my children I've put 5 stone on and I'm unable to shift it.
My hair is thinning. My skin is so dry on my legs it bleeds and I get this overwhelming tiredness similar to pregnancy tiredness.
I struggle to get up and have a permanent low mood.
Each time my thyroid is "normal"
Only things ever flagged are being deficient in vitamin d and folic acid.

I actually cried last time and said to look at me you would think I didn't ever move of the sofa and ate all day and this is so not the case.

Have you ever had your results men? Do you know what they are?

That's tough walnut. My gp did admit that general practice is rubbish at treating thyroid issues as it's actually so complex and there's still a lot they don't understand . Have you been referred at all? When I was on too much thyroxine for a while I must say I had symptoms of hypo as well; it's was confusing. Which is why the endo suggested trying a really suppressed tsh.

**Ekphrasis I haven't actually been given my levels. Just taken the gps word for it when they've said normal
Even though I don't feel normal!

If I ate 3 balanced meals a day I would pile weight on.
Last time I went I was put on vitamin d and calcium tablets as my levels were so low.
I've also been diagnosed with reflux this year and went to a&e feeling like I had something stuck in my chest/throat.
I'm now reading that it can all be connected?

Also foot pain? I do have a physical job but my feet
Especially in the morning hurt a lot.
I hobble for the 1st couple of hours of the day

They may be normal but it's worth asking for print outs of results. However low vit d and other things eg ferritin and b12 do make you feel terrible too and have similar symptoms.

Unfortunately (and I hate to type this) but also some people put on more weight than others or just do as they get older without any thyroid disease - weight is never a symptom for me, infact I can loose weight if hypo.

A key factor is family history of thyroid or autoimmune disease too.