To think that more women may be happy to give blood if the NHS treated any resulting anaemia properly?

[Herriet]

I realise this may just be me, and if it is then I am definitely unreasonable!

I gave blood every three months for years and during those years I slowly became more and more anaemic. I was in my twenties, healthy and eating well, and my periods were not heavy.

We know that heavy periods (over 80ml per month) can cause anaemia. This equates to 240ml every three months. But for some reason the NHS doesn't mention that giving away 470ml in a donation might cause anaemia too.

I've since had babies and ended up with an iron infusion. These are expensive. But now I have a lovely iron store, likely to last me years and years. I see the NHS is desperate for donors (link below) - should I restart donating and give it all away again? If I get anaemic again they will say 'take iron pills', but I've tried a variety of these before and they do not agree with me. So I can choose to give blood and eventually need iron pills and be permanently constipated, or I can choose not to, and be happy and healthy. I would donate if they would give me an iron infusion at a reasonable 'ideal' level of ferritin, rather than only doing it once ferritin is 5 or whatever and I can barely function.

I'm O negative. The NHS really really wants my blood, according to the article below. But not enough to offer me another iron infusion in future if I become anaemic again due to donating.

https://www.bbc.co.uk/news/articles/c98p0pj7dypo

Anaemia and iron deficiency aren’t the same thing. What most posters have described in this thread is iron deficiency and not anaemia. There’s free iron in the blood, there’s ferritin which is your body’s stores of iron to draw on when dietary intake is inadequate, and then there’s haemoglobin which isn’t iron. Don’t mix them up.

I’ve been very iron deficient with my ferritin undetectable but I wasn’t anaemic. My haemoglobin was fine. I felt like crap. My GP insisted on me having a colonoscopy and gastroscopy done to check for bleeding and because I have coeliac disease and reflux. Everything was normal with no bleeding so he cleared me to have an iron infusion. It was great. It put my iron stores up to healthy levels with no gastric upset. I’m not in the UK. I used private health insurance to get the procedures done.

I have an iron infusion done every 2 years or so. Probably costs about $200 before rebates. Well worth it to not feel as dead and to not suffer through iron tablets that never make much improvement to my ferritin levels. Lots of GPs do them now so they’re readily accessible if you can afford the upfront fee.

I’ve never donated blood. My veins are terrible, blood tests are hard enough and are painful, and I have a chronic illness that excludes me from donating.

Slightly off topic from donating, as I’d never even consider it as I think I’m probably borderline on iron even with taking tablets.

By the same principle, the fact that the OP and some others have given blood over a long period and have become anaemic is not an evidence base for attributing the anaemia to blood donation. There are many reasons why ferritin lvels can drop, and having good levels in your twenties, as the op says she did, and poor levels a long time later is by no means evidence that the donations were responsible.

BTW, a few posts have said that women can donate every 12 weeks. I think that is only true for men. It is 16 weeks for women, precisely to minimise the risk of the issues spoken of here

I was first diagnosed with anaemia aged 10 (interestingly, didn’t start periods till 13 so not sure why)
@RaspberryRipple2 Anaemia or iron deficiency? Periods aren’t required to be iron deficient. My DD was iron deficient at 4yo due to inadequate dietary intake. Certainly no periods involved at that age. Not anaemic. We tried various forms of iron supplements over the years and at 11yo she had her first iron infusion. Her periods hadn’t started yet. The probably the first time in her life she had colour in her cheeks and wasn’t ghostly pale. She’s had at least one more since then because her ferritin dropped again. Periods are light so it’s not them causing low iron. Still no anaemia. Periods aren’t the only cause of iron deficiency. For my DD it’s inadequate dietary intake.

Quite a high proportion of the population either can’t give blood or have blood types they aren’t interested in collecting. I’m the latter group. There simply aren’t enough people with my blood type for it to be worth their while. I’ve been on their list for years. Gave blood twice a long time ago. I think they used it for blood plasma or platelets or something, rather than haemoglobin. This was pre children. I then received a letter saying don’t bother turning up unless I hear from them. I never have. I’d be willing to give blood still, but the message is pretty clear: your blood is useless for giving to other people.

The NHS can be a pile of crock shit. My DD is doing GCSEs and had ferritin at 2 or 3 and Hämoglobin in the 50s but she won’t get an iron infusion. It’s reserved for the elderly or those with cancer but apparently her future and mental health doesn’t matter. She had glandular fever too.
And the privately available iron infusion in London are almost 1000 pounds. Thankfully I found a lovely doctor in France for when we go there next month who will do it for a very reasonable price. It’s a disgrace.
The GP has now sort of diagnosed DD with anxiety and we are on the pathway. But it may just be her physical health! It’s a real joke. If we lived in France, Germany or Switzerland they would have first sorted the physical stuff.

£1000 is ridiculous. It’s a cannula, bag of saline and 1000mg of iron liquid, a few minutes for a doctor to place the cannula and remove it at the end, and a nurse to supervise and monitor the infusion running. Oh, and a band aid or dressing once the cannula is removed. That’s not $2000 worth.

To cut side effects - take prescription iron every other day with 1000mg vitamin c, it does help
i am taking ferrous fumerate (over the counter) as my ferritin was already a bit low at 60 and I lost 400ml blood in an operation

The actual iron costs the NHS £154.23. I guess private healthcare companies might have to pay more for it. But £1000 does seem insane, even taking into account one hour's worth of nursing costs.

Ref: The NHS cost is about a third of the way down this page https://www.britishjournalofnursing.com/content/product-focus/addressing-and-mitigating-the-high-costs-of-extravasation-and-infiltration-to-patients-and-healthcare-organisations/

Some of us have both and still get bugger all. My HB was low but wasn’t dangerously low to go for NHS infusion.

thankfully I found a very reasonable place further north. It has changed my life tbf, I can do my food shop now without nearly passing out, simple things like hair and teeth don’t seem like tireless chores.

I paid £300 off someone’s recommendation on here. Was a private clinic and worth every penny.

It is expensive in London privately because they cannot just give an iron infusion , they say they have to also do a full consultation based on the blood work etc first, plus I guess the risk of allergic reaction. The point is though the NHS SHOULD give a child doing GCSEs with a Haemoglobin in the 50s a prompt iron infusion and a ferritin of 2.

I actually relate to this a lot after reading the same article this morning. I am the same and I am happy to donate, but I can’t do it at the detriment of my own health.
I’ve had multiple failed attempts and to top it off the nurse dropped the needle last time which scratched my arm ever so slightly and I couldn’t donate. So I’ve given up!

I was unable to donate blood last year due to a ferritin level of 10; I had to cancel an appointment I had. I was given supplements by my GP but they stopped them after 3 months, when my blood was retested and my ferritin level was found to be 23, which they said is aqeduate. It really isn’t for a woman of my age (mid 40s, still having periods) from what I’ve read. So I feel the same, especially as my levels might have gone down again since (they aren’t retesting).

don't forget cost of the well maintained resus trolley and maintaining the skillset to manage anaphylaxis. You could probably get it a bit cheaper if you cut out those bits, but just every so often it'll kill someone.

https://www.medrxiv.org/content/10.1101/2021.12.13.21267744v1.full

This is an interesting study from the Netherlands which seems to support OP's experience (overall picture of a significant drop in ferritin levels in male and female regular donors over the course of 2 years).

I am a regular donor (more than 25 donations) and my ferritin was a bit low on my last annual GP blood test. I always pass the haemoglobin test when donating, although sometimes they have to do the test on the glass slide (last time worked in the copper sulphate for the first time in a while). I don't feel anaemic (have been anaemic in the past after giving birth), but I think I will start taking Feroglobin to up my ferritin levels.

Thanks for raising this, OP.

I'm female, and my blood bag is always marked NEONAT, because I'm clean of CMV; which is dangerous to neonates.

You can buy the supplements at the pharmacy @whiteluckycat - they aren’t expensive. I do not think they are more than the adult prescription charge. Ferrous Fumarate is like 7 pounds in London.

In our case, the NHS should have just done the iron infusion for 153 pounds. Instead we have had multiple GP appointments, referral to CAMHS, school filling in ASD/ADHD forms, referral to paeds as well. I obviously do not know if any of that is going to be relevant or not, but it may just be physical symptoms.

I have numerous friends, all female obviously, who got CFS even ME and often also associated with low iron stores, haemoglobin issues, unknown allergies/intolerances like diary/gluten, all discovered and managed by them years later. I am not doctor, but obviously all this stuff, including gut health does hang together and for the longest time, the health of teen girls and women has not been proactively supported.

This is fabulous, thank you!

From the article in the quoted post (my bold):

Generally, in male and female donors, it appears that all donors show some level of decline in ferritin levels, and the degree of this decline may depend on baseline ferritin levels. Based on previous studies showing a high prevalence of iron deficiency in repeat donors, and a relatively long recovery of iron stores, this finding might not be very surprising [1, 5, 9, 24]. While Hb levels may remain stable over consecutive donations, iron stores continue to be depleted which remains unnoticed when ferritin levels are not measured

I was going to post what my midwife told me about donating blood but think I would get people attacking me for “trying to put other women off” so I guess I won’t.

I think it’s really wrong of those posters trying to shut down a discussion they don’t like btw.

I wish I hadn’t donated tbh

I’m constantly borderline on Hb and ferritin, not low enough to get any treatment - especially not an infusion - but low enough to affect me. I’ve been turned away about half the time for donations.

I am not vege and don’t have heavy periods, no idea why I’m so low, but donating won’t have helped.

Precisely my point. Blood donations alone do not always cause anaemia. They may contribute but are not a cause alone.

Not the point of the thread OP, but could you please tell me about your iron infusionS? Been anaemic for years and really struggle with taking the supplements as they affect my stomach.
Do you pay for your infusion privately and where do you go? Thank you

I am not the OP but had one last year.

I had blood work done at my GPs, told things were ‘a bit low’ and just take oral pills.

I went to see a private consultant who specialises in anaemia and b12 issues, based in Cambridge. I sent him my blood results in advance. He said no wonder you feel so awful! Oral iron is not going to get that up significantly or quickly so you’re a candidate for infusions.

He also thought my b12 was low and folate. He tested me for autoimmune disorders as they often cause these issues going hand in hand. I tested positive.

i had the iron infusion on the day, and since have had b12 injections, and prescribed high strength folate. It made a big difference.

The iron infusion was about £1k (in total I think I paid about 1.2k ish can’t quite remember). Worth every penny.

It was a revelation to have someone listen to me, and acknowledge that I was feeling so dreadful for a genuine reason- it wasn’t in my head and dismissed.

I also had to stop donating due to low ferritin. I cannot say whether donating contributed to the lowering of my iron stores but I absolutely agree that regardless of cause this is not something that is taken seriously enough or adequately treated on the NHS.