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. 😢

Spatone is amazing.

4 sachets of it over 2 days saved me from a blood transfusion after I had an emergency caesarian.

Have you tried ferric maltol?

Have you tried iron bisglycinate?

This paper describes potential causes of iron deficiency without anemia and it has flowcharts which would take you to the point of needing iron infusion if intolerant to all oral preps and all strategies suggested failed. I don't know if a GP would be able to do much with it though or if a hospital would accept a referral. Staffing iron infusions takes a lot of resource as it takes place in a clinic and people have to be watched for potential allergic reaction, so that is space and staff that the system seems unable to afford these days
https://pmc.ncbi.nlm.nih.gov/articles/PMC8002799/ "Iron deficiency without anaemia: a diagnosis that matters"

I'm currently having further tests because I've been identified as having something called myocytic anaemia.

My haemoglobin cells are micro sized and the iron cells can't stick to them.

I believe that's the crux.

Still waiting for definitive answers, having to have a test redone. I've had anaemia on and off since my mid teens. I have very heavy periods (I have endometriosis) and have spent more of my life plant based, or at least not eating red meat. Those have been blamed before, but its by chance a doctor looked at all my tests on one screen together and saw a pattern.

I'd be wondering if you had any iron absorption issues, and whether that affected how you react to the pills.

You will need to help yourself and take the pill to stop the periods for a start.

Try spatone liquid, you can get it on Amazon . I've been anaemic for years, prescribed iron tablets but can't take for long as I have ulcerative colitis so always been under the advised iron level. Have been taking spatone for a few months and now above the level for the first time. I take a sachet a day and it's really helped.

Where in the uk are you? There’s an affordable clinic in the north west

Thank you for posting OP. I have tried to get an iron IV for months and as the GP on the first page said, unless your Haemoglobin is under 100 they don't allow it. Mine is 108 and my MCHC is 315 and I am already taking injections for B12. I can't work as just going out for an hour makes me sleep for most of the afternoon and I have been struggling for 2 years.

Im so sorry. I had this dance with my GP last year. Horribly anaemic, waiting for an iron transfusion and not being able to have the operation I needed, hip replacement, until my anaemia was sorted. I was in agony.
I took 3 iron pills a day for over a year and my iron levels did not rise.
In the end out of desperation I put a private transfusion on my credit card.
We have a private iron transfusion unit here at Yeovil hospital. It was £800.
There is a lot you need to know about anaemia for example cereals such as Special K and weetabix have your whole iron for the day in one portion but if you eat them with ordinary milk and drink tea or coffee at the same time you destroy 70% of it.
You need to have it with plant milk and drink tea or coffee at least an hour later. Calcium and tannin prevents iron from being absorbed properly.
If you go onto AI Gemini or the like it will give you an iron rich plan and tell you the best way to absorb your iron.
You can also buy iron rich spring water from chemists. Here in Glastonbury we have Chalice Well an iron rich natural spring and I drink 2 pints a day. Its free from the well tap.
You are better off with liquid iron also ditch the pills.
Ive been anaemic for over 30 years even after my periods stopped. Now Ive got it right under control. Good luck.
My GP didnt help me at all. I had to find all this out myself.

In my experience as someone who fought tooth and nail (successfully) for an iron infusion when pregnant (ferritin 4) and being a healthcare professional myself, it would help you argue your case to include key phrases like this:

I am finding myself unable to fully care for my child without significant, additional help.

My symptoms of (…) are debilitating and I am now unable to perform normal day to day activities independently such as….

It is now impacting my quality of life and mood.

I am planning to conceive in the next (…) and I am concerned that this will further adversely affect my physical and mental health during that pregnancy, particularly in light of pregnancy further reduces iron stores

I have trialled (…) number of first line options for my deficiency and despite trying numerous ways of taking them, this has not reduced their side effects which I am unable to tolerate.

I have thoroughly researched alternative options including an iron transfusion, and have weighed up the pros and cons including potential risk of transfusion. I have familiarised myself with the process of an iron transfusion and that the nursing staff are highly trained to identify risk of any adverse reactions to the infusion and stop the infusion if necessary. This is a risk I have weighed up and am willing to take as the benefits outweigh the potential small risk.

I am asking for you to treat the person sitting in front of you and not just the figures alone. If you are not willing to offer appropriate alternative treatment I would like you to clearly specify in my medical notes why you are refusing me referral for an iron infusion.

I really hope you get somewhere with this. Perhaps meeting with another GP who may be more sympathetic might help alternatively. I have been there in the trenches of iron deficiency and unless someone else has experienced it, it is hard to understand just how debilitating it is. Good luck x

I got an iron infusion on NHS but I was feeling awful. Ferritin was two and hb was 72 ( went down to 69 over a couple of days) I felt like I was drowning when lying down and developed liver pain. I thought it was gallstones tbh.

I needed to have a blood transfusion first to raise hb and then an iron transfusion. They only do them for in patients where I am so you need to be sick enough to be hospitalised. I did get a top up iron infusion a month later.

Thats the one. I couldnt remember the name. Its an iron rich well in Wales. We have our own iron rich well in Glastonbury. The water is free. Im off there later to get some.

@SomeoneSpesh coming back to this thread to say that my iron levels are up and the only change I've made is using the oral spray, so it may be worth a try if you don't get anywhere with an infusion.

If they have refused because you’re not suffering from anaemia there’s not much they can do.

Have you tried a Lucky Iron Fish and a Spray iron vitamin? Red meat and leafy greens with vitamin C?

@NNforthispost Gastronomic - adjective meaning "relating to the practice of cooking or eating good food."
E.g. "the hotel restaurant serves the most exclusive gastronomic delights"

Typo - should have said ‘gastro’ as in ‘gastrointestinal’. Hope that helps.