To ask you to help me get an iron infusion on the NHS.

[SomeoneSpesh]

Last time I had my bloods done, my ferritin levels were 4, but haemoglobin was borderline.

The GP prescribed me iron and put me on the contraceptive pill to stop my periods. Please don’t judge me, but I didn’t go on the pill because I was considering having another child. I don’t think that’s going to happen now.

I have been on every type of iron known to man, and despite changing dosage, timings etc etc, I absolutely cannot tolerate it. It makes me feel so horrendously sick. I can’t cope. Especially not on top of all the symptoms I’m already trying to deal with. I am completely exhausted and worn out.

I have been refused an iron infusion, and can’t afford it privately. I know that this would be life changing for me. I feel so drained that even walking is strenuous for me.

Is there anything I can do? I appreciate I didn’t do the right thing with not taking the pill, but I just need to sort this. I am really, really suffering. 😢

I’ve had four. Not sure what to suggest really as a gastronomic consultant arranged it for me after looking at bloods and said my life was at risk if I didn’t have it done. I was on iron tablets but having absorption issues through my gut.

I hope you don’t mind me asking, but your post has frightened me a little. Why did he say it was life threatening? What was the risk, if that makes sense?

I’m really glad you were able to access the infusions.

Watching with interest OP and sending my best wishes. IME GPs don't care that low ferritin makes you feel like death and you are lying breathless on the sofa.

Be interesting to know how they would react with a man though.

Have you had all the tests to see if there is a reason for the low levels?
Is it just due to your periods?
As above, the only way I've heard of people getting infusions is via the gastro route

I am a GP. Our local iron service will only accept referrals for infusion if haemoglobin is below normal ie 120 for women in most labs. 100-120 our waiting time is 1 year! Below 100 it's urgent which still means 6-8 weeks. If you're above 100, there is literally no chance of being accepted no matter how much the GP referral letter begs (I know, I have tried!).
There's a newer form of oral iron called ferric maltol. In my area it's specialist recommendation only so your GP would need to send advice and guidance to haematologist for permission. It seems to be much better tolerated than the traditional ferrous fumarate/sulfate/gluconate. I'd try asking for that. Your GP may not have heard of it. I spotted it in mentioned in a patient's haematology letter a few weeks ago and looked it up.

I got one but they refused at first.
I didn’t take the iron tablets as I couldnt tolerate any of them I did try feroglublin otc. But apparently this wasn’t high enough
They eventually agreed but this was in hospital With a severe heart condition

I’m on the tablets now hough and I seem to be ok on them as long as full stomach.

It has always been put down to my periods. I don’t really think it’s fair to just assume that. Although I do have heavy periods, so could realistically be the cause.

Have you been tested for coeliac disease? Just wondering if you have an underlying malabsorption issue? Ime a GP is too quick to blame low iron on periods with no evidence.

I haven’t, but I don’t have any other symptoms of that.

X post.

Can you not ask your doctor for anti sickness tablets to help you take the iron tablets?

A lot of people are “silent coeliac”, so no gastro issues. But such low iron store is a possible symptom

It's a nightmare isn't it? My referral was refused last time then they re-sent it and it went through fine. All seems a bit random.

I only got one when I was pregnant as they wouldn’t let me give birth without it.

I hope you get one- the relief was instantaneous.

Do you have really heavy periods? Have you had any other investigations into why your ferritin is so low? You’ve tried ferric maltol and’s iron bisglycinate or things like floradix or spatone? I know you said you’ve tried everything but these are the gentlest kinds of iron, if you can’t take any of these then at this point I would be going back to the gp listing everything you have tried and the side effects plus your current symptoms.

Just to be clear, what I'm about to say is say is not all serious, the bit about iron supplements is.

You could try getting a stomach ulcer and waiting for it to bleed. I came out of hospital, after this happened to me, and I had both a blood transfusion and an iron infusion. Cannot say they made me feel any better.

I'm now on iron tablets, and I understand to a certain point, what you say about taking them. . I had stomach cramps and a big reduction in my appetite. I tried taking them with orange juice and the cramps disappeared, but may be it was just my body getting used to them.

My appetite is still vanishingly small and I've been advised to eat for calorie input, and not concern myself with healthy eating for the time being. Treating that as excuse to have ice cream for breakfast 😁

If you can afford it, private was under a grand. I needed consultant appointment (£250ish), blood tests (I think £80 or so), and infusion itself was only £300 or so. That was a Nuffield.

What about this? https://luckyironlife.com/collections/lucky-iron-fish

I have gone through the same thing very recently. My iron was 3 but heamaglobin was ok. The doctor put me forward to have an infusion on the NHS but it was refused. I have part of my bowel missing so we know why my iron levels are low. The GP said they will only give an infusion if both levels are low. I have taken every kind of iron tablet. Currently on Ferrous Maltol.

So on Feb 1st I bit the bullet and paid for a private infusion. I just had to, my levels were on the floor and I could barely function.

If you find the answer let me know!
Had to pay privately and put it on my credit card.
I feel a little better but not like the miracle cure I was hoping for. Slept for 14 hours last night and still feeling tired 😩

They won't do it.

Unless your blood levels are dangerously low.
So it doesn't depends on the ferritin level but rather if you are anaemic or not.

Things you can try are.

Trying the iron syrup instead.

Better with this.

Cos even if they say take 10mls twice a day.

It's better to take some rather than none.

So even if you can take 2mls a day it's better than nothing.

Other things to try would be spatone- a little expensive. Or mutivits that contain iron. The iron content is much lower in those so less likely to cause issues.

As well as iron rich foods.

It's not up to the GP

It's the hospital.

They just reject the referral if the blood level isn't low enough.

My absolute idiot sexist pig GP told me it was in my head. Ferritin was in single digits and stress causes that apparently.

My teens ferritin was 13 so just in the range but the NHS range is seen as conservative these days. I haven’t managed to get any iron supplements into her but she has taken to eating lots of steak and in 4 months ferritin has gone up to 38.

Probably diet/supplements aren’t good enough for your levels but I did buy some Spatone which is iron rich Welsh water which is meant to be easier on your stomach. Also not drinking milk with any iron rich food as it stops absorption, I think Vit C aids it.