To think NHS guidelines are made on pure whim?

[pinkzebra02]

I honestly don't know whether to laugh or cry. I've been let down by the health service multiple times but the latest letdown really goes beyond a joke.

I've been complaining of fatigue and low mood for months and had blood tests, nothing was flagged so I assumed it must be something else. I access my health record and it shows my serum ferritin (iron stores) are at a grand total of 12. NICE guidelines say that anything below 30 is a deficiency, but because the NHS for some reason ignores this and sets their lower range for 10?

Not only have I not been told about this (had to download nhs app just to view my results) but since being tested over a month ago I've developed blurred vision and frequent headaches, on top of the worsening fatigue. So essentially my organs have been starved of oxygen whilst healthcare staff happily pick up their pay packets for inadequate work. Yay.

AIBU to imagine that NHS guidelines are based purely on the mood of whoever is at a keyboard somewhere, rather than actual scientific evidence/ advice? And why exactly are our taxes being spend on funding this horrendously awful service? A literal farce.

You're being ridiculously dramatic. The lab reference ranges at your surgery (not the entire NHS) are lower, therefore the HCP who checked your results saw they're 'normal'/in range, and reported as such. It's not exactly an error, but it's also not particularly good clinical care, as it's so borderline. You probably should get oral iron (disclaimer - haven't seen the rest of your results). I'm sure if you book another appointment or call up to query it'll be resolved fairly easily. HCPs are human, and also are being asked to do more and more with less and less.

BSG guidelines state 'Serum ferritin (SF) is the most specific test for iron deficiency in the absence of inflammation. An SF level of <15 µg/L is indicative of absent iron stores, while SF levels of less than 30 µg/L are generally indicative of low body iron stores. The lower limit of normal for most laboratories, therefore, lies in the range 15–30 µg/L.
As SF is an acute phase protein, however, apparently normal levels may occur with iron deficiency in the context of an inflammatory disease process.26 An SF cut-off of 45 µg/L has been suggested as providing the optimal trade-off between sensitivity and specificity for iron deficiency in practice.'

You're confusing your lab reference ranges with NHS guidelines. The NHS uses various guidelines, some of which will be NICE.

Just googled and it looks like 5mg of iron. If the 210mg of iron tablets can’t lift my levels above 12, I don’t think 5mg will do much but am I missing something? Happy to be told I’m wrong.

iron Glycinate is better but still messes with my digestion. GP was unsympathetic when I said I was struggling with the tablets but the pharmacist suggested I try these ones.

You sound aggrieved by your treatment by the NHS, which is fair.

As others have said, ferritin of 12 isn’t wildly low, it’s just a bit of anaemia. If you focus too much on the low-ish ferritin you’ll be at risk of not being taken seriously (especially if you talk about organs being starved of oxygen, etc.). They’ll see people with far lower ferritin levels, day in and day out. It can be easily treated by yourself with iron tablets, spinach, Spatone, Floradix, etc (have you tried this?). This should work, unless you have a genetic condition like thalassaemia which prevents you from storing iron.

Your blurred vision and headaches are likely caused by something else, and I would focus on that while seeking treatment. There’s no evidence iron deficiency causes blurred vision. But you could request an iron infusion if you really want to rule it out.

NHS guidelines are decided by experts, and as another poster has said, guided by randomised controlled trials. There is no conspiracy of people presenting healthcare information wrong on purpose. Just normal people, medical researchers and clinical staff, doing their best.

Have you visited an optician?

(not being sarky at all btw - opticians are highly qualified to assess vision problems. You might have more luck than through general practice)

Same with thyroid, my TSH wasn't over 10 but I felt awful
Immunology found my thyroid antibodies were high and suggested I needed a referral. My GP said no
Ended up on meds in the end but it took feeling shit for ages

Blurred vision when you stand up sounds like low blood pressure.

Why do you think Ethiopia has witch doctors? @pinkzebra02

Dance around you? You sound racist op

I appreciate your frustration but you’ve misunderstood. It is not guidelines, it’s the lab values that your blood sample went to.
I would suggest you follow up with another GP for a second opinion.

Whilst we are all here. I paid for a private iron infusion which triggered an horrific reaction called hypophosphatemia. It was the brand FERRINJECT that is most likely to cause this. Biggest error as I've never recovered. Was hospitalised for weeks.

Anyone looking at iron infusion privately just make sure it isn't this brand. The reaction doesn't happen to everyone btw but this brand has lawsuits against it right now in the US.

I have POTS which does this. Massive blood pressure drops like you say. Hideous. Lots of deficiencies make it worse.

Iron infusions should only be used in very limited situations and should not be available on request privately. I would suggest referring the company who did it to the CQC and the dr to the GMC.