To wonder why the NHS has such a high threshold for blood work?

[SailAwaySandra]

In a nutshell, my folate levels are actually low after all. But they’re NHS borderline.

For about 6 months now, I’ve felt like utter death. Really stanage symptoms, fatigue and joint pain making me feel like walking through treacle.

It turns out my folate levels are borderline and actually low. And the ideal is that they’re much better than they are!

I’ve had 3 blood tests via the NHS, each time going to the GP very worried as I am only 26 and physically felt like my body was aging! Sometimes I had to flinch to move a leg, for example, if I had to sit for a minute or so and get up again

GPs kept saying all was normal. Nothing to worry about.

Paid for a blood test and told within 72 hours that my folate levels are too low. And to take folic acid (I’ve already put loads of it in my diet)

Why or why did no GP say ‘it’s within normal range but your folate is in the low side. You might want to consider buying some folic acid and introducing more of it into the diet’?

Does anyone know anything about ‘my future health’?

I’m wondering whether it will throw up better results for people.

So buy over the counter iron tablets - they are widely available!

https://www.boots.com/health-pharmacy/vitaminsandsupplements/vitamins-supplements-shop-by-ingredient/iron

She already had three NHS tests so it was easy enough to get supplements. She didn't, as far as I understand, get a private prescription. She was just told to take supplements at a private clinic.

NHS absolutely does blood tests for vit D. I look at blood tests as part of my clinical work.

OP, if you don't feel any better after supplementing, I suggest you ask your GP for a referral to a chronic fatigue service.

I can't remember where I read it, but the reference values are based on the Normal range - as in, the mathematical meaning of the word Normal.

And the Normal includes 95% of the populations - including very sick people.

So yes, if you're at the bottom end of the "normal" by definition this is not ok, nowhere near optimal.

Which is why there are private companies willing to take your money to check how close to optimal you are in any given factor: thriva.co/hub/blood-tests/what-are-optimal-ranges

I had a blood test recently and went to the surgery to pick up the results - was told “all normal” by the receptionist. But I asked for the print out, as I wanted to know the levels. (Post memo and feeling run down, wanted to check thyroid, iron etc before fiddling around with HRT doses and tbd the female GP agreed to the test). She huffed a bit and said I had to fill in a form to get it (!) so I said I would, then she just printed it out for me anyway. So I took the print out home and went through it with Dr Google. My ferritin and B12 were on the low side of the ranges, ferritin particularly so. So now I’m talking a simple iron tablet and Berocca every other day.
I wonder if the problem is people get told “normal” but never see the actual results?

GPs don't seem to look at the actual readings, they just see the "normal range" and tick the "satisfactory-patient can be informed" box.

It's often not even the nurse/GP that you consulted with and ordered the blood test who reviews the results, and they don't check the system to read the notes as to why.

I have T2 diabetes and for the last 3 annual "check ups" when I phoned the reception for results, they just said "doctors says it's ok", so I just thought things were good. (They take the blood during the consultation, so the nurse doesn't have the results obviously when during the review, whilst checking feet, blood pressure etc)

I got a GP appointment for something else and casually mentioned the diabetes and that I was well under control, etc and he said, no, it wasn't under control at all, the blood sugars were going up year after year and were too high for the medication I was on - they were in the "normal" range for a diabetic apparently, but not one who was one 3 different diabetic drugs!

He pinged a message to a diabetic nurse who got back to me a few weeks later and we started a monthly dialogue and monthly blood sugar blood tests to work to getting it down again. All going well, then she left. Radio silence from the surgery again. I phoned the reception for the last blood test result, and it was back to the old "GP says it's satisfactory". I asked for a consultation with a diabetic nurse, but receptionist said they can't because GP had put on system that the blood was satisfactory! I was assertive and the receptionist finally said she'd ping this random GP to tell her my comments and ask what to do. She rang back a few days later with the same "GP says it's satisfactory" and just to wait until the next annual review!

Just had that annual review and blood tests have come back - still too high, and they were still too high last time too. So a new diabetic nurse will be contacting me shortly!

It's not just that GP's take too much reliance on the "normal range", nor that they don't read the notes on the system, but by doing so, they block the patient from seeking further advice from the actual staff who know what they're doing!

Wrongly gatekeeping!

If you get the NHS app, you can access all your results on there without having to ask for them to be printed.

Agree with pp that the 'normal range' includes people who are sick or elderly and thus this skews the range to include very low values that are a long way from optimal. It's not just folate but a lot of things. My particular beef is with thyroid ranges. They are a long way from 'normal' and do many people who need to be diagnosed and treated a disservice as they cannot get the thyroid hormone they need prescribed.

I may be wrong but I don’t think we have it in Wales. I know the NHS England app works this way. I tried to do that a few years ago but it doesn’t exist the same way, you get redirected to the Welsh website. Happy to be corrected if they’ve now got their act together! (Wish they were merged anyway but Health is devolved so results in things like this; on the other hand we do get free prescriptions).

NHS absolutely does blood tests for vit D. I look at blood tests as part of my clinical work.

I love it when people post about their own experiences and are adamant that it must extrapolate to everyone else’s! Absolutely, vitamin D blood tests are available on the NHS but the criteria for trying to get one has been hugely limited in recent years. Have a Google or speak to your local friendly GP to find out more and why.

Sorry! - I didn’t know you were in Wales.

Wish we had free prescriptions!

I came across an article earlier this week about the commercialisation of healthcare. This sounds like another example.https://bylines.scot/health/physician-associates-the-hidden-agenda/?fbclid=IwY2xjawE5repleHRuA2FlbQIxMAABHb0h0qCLHDzQd0Crc8WjxV6QLb3qwQND1J8omPsdjeRA0wS7j8sfBK1eww_aem__4vXlQKwi5joHR72-cvG3g

Thankfully, for the first time, my latest blood test results are all on the NHS app. No one told me this. For the few years using the app, all that was on it were appointments and prescription renewals - everything else was previously blank. I found out quite by chance by ordering a prescription and just thought I'd check other bits of the app and they were all there. Just the latest set, no history of previous ones. There are a couple of them where I'm literally right on the lower border of the normal range, one being the ferratin, so I'm going to do some research and do something about them.

This is a really good bit of progress to allow patients to see their own health so that those who are willing and able can take more control.

My OH has had cancer for 6 years and has always asked for a printout of his blood test results every time he goes for his monthly infusions. They always huff and puff, but print them out for him, and it's enabled him to keep on top of things as he plots them on a graph so he can see the trends of what's steady and what's increasing/decreasing as the months pass. It enabled him to pick up on areas where there was either a long term downward trend or where something that had previously been steady has suddenly gone up or down. He then has the detail to discuss things with the consultant and if his monthly drugs cocktail needs tweaking, then it can be done sooner rather than later before problems arise. He picked up himself that his iron levels were slowly falling, so initially started taking OTC iron supplements, which initially steadied it, but then got the consultant to prescribe higher strength iron supplements which have started to increase the levels again. Consultant hadn't picked it up as despite the levels falling over time, they were still within the "normal" range. The consultant actually said they usually wait until iron falls below normal levels and then do infusions! Surely taking tablets a bit sooner is better/cheaper than doing infusions once it gets too bad and starts causing problems!

As I say, OH has had cancer for 6 years - when first diagnosed he was given 18 months to live! He's still pretty well fit and active today. He puts that down to taking control, keeping on top of the detail, lots of his own research, etc!

Knowledge is power!! We really shouldn't accept being kept in the dark by medical professionals and shouldn't accept their "we know best" attitude!

That's a very recent thing with our GP surgery, literally the last month or two. As I've said, my latest blood test results are all on it. The ones I had done three months ago aren't!

None of my OH's monthly blood test results are on it, but they're done by the hospital rather than the GP surgery, so it looks like the hospital don't put them on it.

As with all things NHS apparently, different trusts, different GP surgeries, different hospitals, do different things. There's no standardisation, so that kind of helps explain why it's all a fragmented mess.

You're wrong about the vitamin D, my NHS GP absolutely does vitamin D testing. I have it once a year as I was found to be extremely deficient (17) 3 years ago and prescribed vitamin D.

This all day long. First, they did not want to test my iron as I hadn't lost that much blood giving birth last year. They then did and conceded I had low iron and high platelets counts (which is common with very low iron and can cause your bones to hurt, as well as fatigue). I spent months feeling like absolute crud, and then when my iron went just above minimum (and platelets borderline high) they said all was good. Fortunately I have been taking extra multivitamins because I am still far from ideal. But the GP did not mention this once only that I was 'now within normal parameters'. So many people could have a much better quality of life if just give the actual info. If someone is only one below the minimum reading, they can see why they may not be feeling 100%. This would actually save the NHS money in the long term!

So buy over the counter iron tablets - they are widely available!

Of course I just buy an iron supplement but my GP said my levels were normal when they were borderline and, in my case, low enough to affect my health. You were questioning the obsession with borderline results, in some cases borderline is enough to cause problems and iron is something you shouldn’t supplement if it’s not needed.

Lots of private providers do tests that have no evidence base to them and then dump the marginally abnormal results on the GP. very unlikely that a borderline low folate will cause the symptoms being described. We do tests if they are needed and evidence based and the result will change management, not on request.

would love to get stuff tweaked so my thyroxine, hrt, various vitamins and amitriptyline were working together

what does that even mean?
what do you mean by 'working together'?

It doesn't make any scientific sense.

Believe me, as a GP that thought has never crossed my mind. I don't care if you pay for your prescriptions or not, it doesn't affect me financially and it's a drop in the ocean of the financial car crash that the NHS is at the moment.

This is why I ended up going to naturopaths and alternative practitioners. My health is much better than it was and they seem to have more of an understanding of how issues with one organ or gland can have knock on effects through other bodily systems. I never chose to seek out alternative medicine, i just wasn’t getting treatment through the mainstream system.

That sounds like total nonsense. The reference ranges are for healthy people. They are often laboratory specific too as different labs will have different machines doing the tests, so will have slightly different reference ranges. There is specific guidance on common scenarios where a person in a particular group is outside the reference range - for example have mildly low white cells is very common and not clinically significant. There is NICE guidance of all of these scenarios so check your results against the guidance first.

https://cks.nice.org.uk/topics/hypothyroidism/management/subclinical-hypothyroidism-non-pregnant/

This is interesting. I had no idea our thresholds were lower. I have regular blood tests as I have chronic illnesses and I’m always on the borderline or low on several measures, feel like crap all the time yet I’m repeatedly told my bloods are generally ok. I’m constantly left wondering why I feel so crappy and sometimes even think I’m imagining my symptoms, so this is really good to know. Thank you!

I've been dealing with similar issues over the past few years. But when I was at my doctors ' surgery recently I saw this poster which might shed some light on the reason:

Same with phosphate. My ds was suspected of having low phosphate / hypophosphatemic rickets by dentist aged 6 in 2018 as he had spontaneous abscess and other bone problems in jaw.

NHS did one blood test and said no, his levels are normal. They were actually on bottom of normal. Referred for genetic testing but genetics then wouldn’t test as ‘phosphate levels normal’ so can’t be that.

Taken him private this year as he’s gradually got worse. We were looking at surgery for knock knees and leg x-ray showed he has rickets. Could have been picked up years ago if NHS didn’t set normal levels so low or had done an xray to double check. They always want to do the minimum. This is a condition that affects bone development with much better outcomes if picked up early.