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.

NICE guidelines

Low ferritin in particular is treated very dismissively in the NHS. It's mainly a women's issue due to menstruation so who gives a fuck if we're practically on our knees with fatigue?

Not sure about your take on the NHS more widely though.

Are you serious? You think the NHS provide a good service? They're completely incompetent.

ILikeItWhatIsIt

You won't mind when it is privatised then and you have to pay?

@ILikeItWhatIsIt
Who is "they"?

Where I work (U.K. NHS primary care) < 30 is considered deficient (and 30 is lower end of normal range on the hospital lab quoted parameters)… and if symptomatic most GPs top up anything < 50 and consider cause.

We’re not all shit, I’m sorry you have had such bad experiences though.

What was your hemoglobin though?
The ferritin level below 30 only matters if your hemoglobin (Hb) is also low.
https://cks.nice.org.uk/topics/anaemia-iron-deficiency/

I already pay for it. Why do people think it's free? They should be done under the trade descriptions act for calling it a service.

Mine was low for 15yrs and no one told me until one brilliant GP tested me and the blood results flagged me as being low and I am now up near 100 with a mirena coil in.

But I don't blame the NHS, I blame myself for not asking about the results and being informed.

The bits of the NHS that treated my husband's stage 4 cancer were pretty competent - he doesn't have it any more and I'm pretty sure that's not because it was abducted by aliens.

OP, I'd go back to the GP and ask them to investigate what the problem is if it isn't your iron levels. And if they're not sure, then suggest perhaps treating that might help to rule things out.

Low ferritin isn't really a problem if your red blood cells & harmaglobin are normal.
Ferritin is just back up iron storage it doesn't have any other function & definitely doesn't transport oxygen. That's the haemoglobin in the red blood cells. Low ferritin definitely doesn't mean your body is starved of oxygen.

I have a medical condition which means I have frequent severe anemia needing blood transfusion. My ferritin nearly always reads <4 which essentially means zero. It doesn't have any affect on me.

The Hb is the test to look at to determine if you are anemic. It's possible to have low ferritin but not anemic which I'm guessing is what your doctor is saying.

There's many, many reasons for fatigue & it sounds like you have had extensive tests to rule out anything serious. Alot of the time no reason is found for fatigue. That's not because the doctor is rubbish it's just they don't have all the answers.

You are likely to benefit from improving your diet or taking a supplement.

I think you've got your guidelines and reference ranges muddled.

I can understand your frustration! It looks like the reference range is incorrect, my blood test results from the NHS shows under 30 as being deficient. Make sure you are tested again 3 months after treatment to check you are absorbing it too. I suffered for a long time without being retested and found treatment wasn’t working. Could have found out years ago if they had followed the NICE guidelines and simply retested. There’s now much more research and evidence to show that low ferritin has a profound impact on health, not just iron levels which many professionals still focus on. I hope you get better treatment soon

Anyone else reading; this is not true. Low ferritin is associated with fatigue and many other symptoms.

Just one paper on the subject: www.ncbi.nlm.nih.gov/pmc/articles/PMC3414597/

Completely agree, there’s so much evidence to back up that low Ferritin needs to be treated! Some Doctors haven’t kept up with the pace of research.

Your organs aren't being starved of oxygen because your ferritin is low end.of normal!

This argument is really annoying. We are allowed to support an NHS system or concept whilst still acknowledging the utter shit show we all have to deal with! I imagine most don't want privatisation. To be honest I've met just as many incompetent idiots privately. The point is we are paying for a service that's an utter disgrace and then end up paying again to actually access some help, support, guidance, treatment. I've lost thousands dealing with significant chronic illness because of the NHS.

I'd just like to know where the number 10 as an acceptable level has come from, if not plucked from thin air. Because I can't find any papers or other evidence anywhere that suggests it's a level consistent with health. Did someone choose the number 10 because it's an even or lucky number perhaps? I honestly wouldn't be surprised the way some trusts are run.

I just want to have my health coveted by a professional working with sound theory behind their practise, and no not come home from a day's work absolutely exhausted because I'm ill and have to do a doctor's work for them.

Doctors are highly trained and the majority want to do the best for patients. You must understand though that they are being asked to see a record number of patients on less and less funding (once inflationary costs are considered).

The NHS and primary care especially (preventative services) need more investment.

Of course numbers aren't plucked from thin air. Professionals who have spent decades training and continue to do so are responsible for setting tolerances. They have generally been doing the job for decades.

I find your attitude very dismissive and entitled. If you don't agree with their interpretation of your blood work, with your basic research from doctor Google, then ask to go back and speak to someone about it. Send an e-consult requesting clarity. Don't diss the whole organisation. Many people everyday get world class treatment from the NHS, I'm still very proud to have it. A system that isn't perfect by any means but, when your lucks out and your health is poor, it supports you. In many other countries you're on your own.

Unfortunately, people will only realise how lucky we are once it's gone. And once it's gone, it's gone for good ☹️

When mine are 24 I feel amazing. Currently at 6 and iron tablets make me feel sick. Gp said that he’ll push for an iron infusion if they’re low after 3 more months… they’ve been low since 2020 so not sure why he thinks the next three months will be different. He blames my heavy periods…. I don’t have heavy periods but my make gp doesn’t believe that. Sigh.

Op I was going to come on to say about my low iron experience and my daughter.. I had hair falling out, blurred vision, I felt power to draining out of my veins.
I had anxiety, struggled to sleep and so on.

Low iron.

Mumsnet has told me ideal levels are around 70 and the NHS is known for this... Someone at NHS was angry with by dd results and told me to always get your results and look yourself... So I did for my dd and she was right on the iron border. The doctor said her results were perfect.

It’s be from a critical analysis of cost effectiveness and clinical effectiveness randomised controlled trials.

@pinkzebra02 I completely agree someone need to hold them to account and about nice guidelines... Why are they so different...

Have you tried Spatone?