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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think the NHS are deliberately keeping people (mostly women) sick?

284 replies

SinkGirl · 10/05/2018 22:02

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.

OP posts:
HelenaDove · 12/05/2018 15:09

Well Balloon it looks to me like the NHS are only interested in the cases they can completely blame on the patient.

Closethegate · 12/05/2018 15:18

I’ve just looked at my last blood results and I think the ranges have changed recently? I’m sure it use to be 6 for treatment?

Top two results are TSH and T4

To think the NHS are deliberately keeping people (mostly women) sick?
BestBeforeYesterday · 13/05/2018 16:00

What's the difference between levothyroxine and NDT?

SinkGirl · 13/05/2018 19:53

The range for diagnosis was changed to 10 a several years ago, the reference ranges have always varied somewhat. 5-6 used to be the norm, own expert association suggested this was too high but for some reason the BTA supported increasing diagnosis level to 10.

BestBefore Levo is synthetic T4. NDT is natural dedicated thyroid, it’s literally dried thyroid gland from a pig so it contains naturally occuring T3 and T4. One issue is that its very hard to ascertain the exact dose.

OP posts:
SlightAggrandising · 13/05/2018 20:24

I have a similar problem... I have no kids (this is relevant).

I have drenching night sweats. Like wake up with ears full of sweat, three pairs of pyjamas a night, averaging three hours sleep.

Doctors: have you thought of opening a window?
Blood test returned prolactin levels three times the maximum.

Doctors: we have no idea what it could be.

I've found a doc who will prescribe medication (off license, it's actually for bed wetting) to stop me sweating which has greatly improved my quality of life.
The massive prolactin (breastfeeding hormone) levels... never ever mentioned. Ever.

Surely... I mean..? That must be a thing?

Nope. Easier to treat the symptom.

MyRelationshipIsWeird · 13/05/2018 20:29

Exactly Slight - even if they do treat things, they don't seem to care WHY you are ill, just treat each individual symptom. Same with B12 deficiency - they offered me the injections but didn't care that as a non-drinking meat eater it is very unusual not to get enough B12 from my diet so it points towards a problem absorbing through the stomach lining. So does anyone think to test that? No, just treat the deficiency.

PrimalLass · 13/05/2018 21:30

I don't think it's that hard to get the dose. I went straight from levo to NDT.

SinkGirl · 13/05/2018 21:59

I don’t know much about prolactin but I do know of a friend who has a prolactinoma - could that cause those issues? So sorry you’re struggling.

Primal I just meant that, unlike synthesised medications, it’s very hard to get an accurate dose of something natural since levels will obviously vary from one animal to the next etc. Not necessarily a big issue, but potentially could be.

I’ve been t

OP posts:
SinkGirl · 13/05/2018 22:02

I’ve been talking to some very educated thyroid patients on a forum and they seem to the think that the variation in my levels over time is likely to mean Hashimotos, even though my antibodies are still within range at present.

I have a horrible feeling I will get nowhere until things completely stop functioning. Looking into private consultants but it seems there aren’t many who are really clued up on this, which seems utterly bizarre to me. When my endo was diagnosed, there were multiple specialists who were always recommended. With this I’ve had a few names of a few people who could possibly help but clearly it’s not that straightforward so even then it’s likely to be an uphill battle.

I just want to feel well enough to enjoy time with my kids, it’s not a huge ask is it?

OP posts:
Kaykay06 · 13/05/2018 22:07

I have congenital hypothyroidism so always had it - sister got thyroid cancer years ago
So I was scanned
No thyroid there which was suspected
Thyroxine makes me feel like shit, doses adjusted, still feel sore tired etc but the gp doesn’t really care or have any further advice etc
Won’t refer to endo and I can’t afford private treatment
So basically have never woken up and felt great and awake etc always been sluggish and knackered. Learned to live with it but it’s really quite shite

SinkGirl · 13/05/2018 22:15

So sorry Kay, I know just how that feels. This is why so many end up self medicating.

Keep on at them, although how much a general endocrinologist can help, I don’t know.

My uncle had thyroid cancer at my age and my nan had some kind of mass removed from her throat at a young age but I don’t know the details. Doctors don’t really seem to care (wish I could go back in time and get help from the awesome GP i had years ago in London - she would have sorted it!)

OP posts:
stopgap · 13/05/2018 22:17

It isn’t much better in the US, to be honest. I did get a Hashimoto’s disgnosis fairly quickly, but then you’re sent on your merry way by the endocrinologist, and told that you will feel like your old self after six weeks on Levo.

I’ve been seeing a functional medicine doctor for five years. We talk about “extras”: an autoimmune Paleo diet, Vit D, ferritin levels, porcine thyroid versus synthetic. My doctor will not let my TSH go over 1 (which is when I personally start feeling hypo) and he also tests for a full thyroid panel.

I live a normal life, in large part thanks to approaching very differently autoimmune thyroid disease, both on my part and my doctor’s.

The standard thyroid treatment in the UK is nothing short of appalling.

SpottedOnMN · 13/05/2018 22:52

My sister had a swelling on her neck and was referred to this guy in Surrey through health insurance. I went with her for her results. Can't recommend him highly enough, he clearly knows his stuff (I have hypothyroidism myself and have read widely and managed to get under the care of an NHS endocrinologist): finder.bupa.co.uk/Consultant/view/25494/professor_david_russell_jones

PrimalLass · 13/05/2018 23:01

No I did know what you meant SinkGiel but I'm not sure it's backed by evidence or what patients taking NDT say.

I could take all the T4 but it did no good. I needed the T3 too.

UndomesticHousewife · 13/05/2018 23:40

This doesn't surprise me, the same thing is happening with diagnosing and treating B12 deficiency.

EachandEveryone · 14/05/2018 08:33

I could’ve wrote this myself. Last year my feet were so
Painful I could hardly walk and six months later they are hardly any better. I’m a nurse on my feet for 12 hours. They get so swollen I’ve had to buy two new pairs of shoes. I was itching my eyebrows fell out. I had to beg the gp to test my thyroid and it was 25! So we started the long process of getting my levels right and last month they came to 0.5. I still felt shit.

Three weeks ago I was rushed into hospital with an ovarian cyst and massive fibroids that are falling appart. I’m 50. For five days I was shoved onto a morphine drip in a general ward and the female obstetrician barely saw me and when she did she kept telling me that when I was discharged I had to go to my gp and start the process of getting referred from outside. Even though I was actually in the building for six nights!

I finally got transferred to the gynae ward and saw the male head of them all he looked at me and apologised profusely but strongly suggests I go on the emergency list for a hysterectomy. I think he’s right.

I did ask to have my thryroid levels checked as I felt they had gone up. Lo and behold they had gone from 0.5 to 8. I just felt it. No one listens. They put it down to the menopause.

Bowlofbabelfish · 14/05/2018 08:55

The reference ranges in the UK are too broad - I don’t doubt that at all. I also don’t doubt that women are very poorly served in general with healthcare - there’s far too much dismissal; I’ve experienced this personally being pregnant and having HG (vomming 30x a day is totes normal, you silly woman! Angry)

But.., It is more complex than just treating everyone with TSH over 2.5. You need to have a proper workup to determine where the problem is, and to rule out any differential diagnoses. There are other conditions that can ‘strain’ the thyroid and if one of these is your core issue then simply adding levo is not helping. Illness and pregnancy for example can also result in transient changes to TSH.

You need to look at the whole clinical picture not just a single lab value. Single values can be quite far out and not be clinically significant, or a range of values can be just a little off and the whole picture can suggest something serious. That’s what a good clinician does - interpret that pattern.

It’s also vital to be monitored properly if you’re taking any kind of medication for the thyroid. I would strongly discourage anyone from buying medicine themselves - you do need to be monitored and levels adjusted sometimes and incorrect medication levels can have life threatening cardiac and other effects.

What should happen is that anyone going to the GP with TATT should be offered a workup including a set of bloods to cover most of the common causes - iron, b12, vitamin D, sugars and thyroid panel. The reference ranges should be brought in line with other countries. A lot of us are vitamin D deficient, a lot of women are anaemic (although again don’t Medicate without a diagnosis, too much iron is dangerous too!)

8misskitty8 · 14/05/2018 09:17

I had a really good endocrinologist, he put me on T3 as I’m not converting the T4 properly. Allowed me to adjust doses too.
But for the last year I have felt like crap. Falling asleep at the drop of a hat but struggling to wake up after 10 hours sleep and having to have naps midweek and at the weekend. Joints especially feet have been really painful.
At my last checkup (I go once a year as have no thyroid due to cancer) he said it sounded like my tablets would need to go up but he’d let me know after testing my blood. As soon as I left I started to take 25mgs more than I was on of the T4 ,so I upped it from 100mgs to 125mgs, after about a month I started to feel better. Tiredness stopped.

But after 8 weeks I got the test results and a different consultant had signed the letter saying I was to decrease my dose to 75mgs as I was running a bit high and sometimes that makes you feel worse. My T4 Reading was 14 Which isn’t even in the middle of the reference range , so I’ve ignored the letter and sticking to my own increased dose.

It’s been 4 months now on the higher dose and the tiredness is gone, when I wake in the morning I’m alert and I can’t remember the last time I napped during the day. My joints have stopped hurting and my hair looks shiny.
I’m due back at the endocrinologist in July as this new consultant wants to see how I am on the reduced dose.
I’m going to tell him that I do not want him treating me as clearly he hasn’t a clue, A T4 Reading of 14 in a thyroid cancer patient is not high enough, nor is taking 75mgs of T4. So I’ll be staying at the dose I increased it too and I want given back to my original consultant.

PrimalLass · 14/05/2018 09:23

I would strongly discourage anyone from buying medicine themselves - you do need to be monitored and levels adjusted sometimes and incorrect medication levels can have life threatening cardiac and other effects.

My GP is happy to monitor me. Her last words were 'keep doing what you are doing'.

Things will hopefully improve in Scotland now that parliament is on the case.

Bowlofbabelfish · 14/05/2018 09:55

I have drenching night sweats. Like wake up with ears full of sweat, three pairs of pyjamas a night, averaging three hours sleep.

Has anyone looked at your pituitary gland? If your thyroid function is normal, you have high prolactin and no other possible drug or physical causes, then they should consider checking the pituitary

SlightAggrandising · 14/05/2018 13:03

I literally cannot get them interested in it @bowlofbabelfish

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

Strax · 15/05/2018 06:55

@MyRrlationshipIsWeird
Same with B12 deficiency - they offered me the injections but didn't care that as a non-drinking meat eater it is very unusual not to get enough B12 from my diet so it points towards a problem absorbing through the stomach lining. So does anyone think to test that? No, just treat the deficiency.
The treatment for problems absorbing through your stomach IS injections of B12. The tests for anti-intrinsic factor antibodies (ie, pernicious anaemia) are not very reliable so it's usual for it to be assumed in the absence of any other causes of deficiency.

Battleax · 15/05/2018 07:03

The treatment for problems absorbing through your stomach IS injections of B12. The tests for anti-intrinsic factor antibodies (ie, pernicious anaemia) are not very reliable so it's usual for it to be assumed in the absence of any other causes of deficiency.

If you have PA, isn’t it liver (?) that should be checked more closely?

What about Crohns, Coeliac disease or similar?

It’s well worth knowing why you have a chronic deficiency. For various reasons.