Anyone managed to get iron infusions on the NHS, and if so would you mind sharing how?

[AnnaBelIa]

I am struggling to get my iron up on oral supplements, which are also causing side effects, but my GP shut down my suggestion for an infusion.

I have read varied information from people who got infusions on the NHS and wondering if anyone who has managed to get infusions would mind sharing their situation and how they managed to get them?

My concern is supplements are already hard enough to tolerate, and when I am pregnant it will be harder. Without supplements my ferritin is 11.

Thanks for the help.

I am actually very angry Wes Streeting decided as Health Secretary to fund a report on over-diagnosis in ADHD and Autism knowing full well the NHS was partly responsible through not being preventative about anemia in pregnancy. What a wankery thing to do, stirring up all of that division rather than solve the root cause!

I thought the evidence linking maternal iron deficiency with ADHD / autism in offspring was, so far at least, moderate for association, weak for causation?

At a private clinic in SW London that offers various treatments and physiotherapy. I had an off duty NHS GP deliver it, which gave me confidence.

“I thought the evidence linking maternal iron deficiency with ADHD / autism in offspring was, so far at least, moderate for association, weak for causation?”

My understanding was it is still subject to research.
But look, even a suspicion or the possibility of it, should encourage women to have blood tests before getting pregnant and support all sorts of common vitamin deficiencies and anaemia adequately. There is nothing more important than helping women have healthy pregnancies and babies and prevention of poorer outcomes for mothers and babies. It is a false economy not to.

Especially if there may also be research linking Covid to iron metabolism dysregulation.

I have one in a few weeks ( ferritin of 8) and have a series of B12 injections going on.

According to google it has been known for years (2019)

• Intellectual Disability (ID): Risk increased by 120% (OR, 2.20 overall; up to OR, 2.72 for ID without ASD). Absolute rates were 3.1% in children of early-anemic mothers vs. 1.3% in non-anemic mothers.
• Autism Spectrum Disorder (ASD): Risk increased by 44% (OR, 1.44). Absolute rates were 4.9% vs. 3.5%.
• ADHD: Risk increased by 37% (OR, 1.37). Absolute rates were 9.3% vs. 7.1%

https://news.ki.se/early-maternal-anemia-tied-to-intellectual-disability-adhd-and-autism

Especially if there may also be research linking Covid to iron metabolism dysregulation.

Well precisely, with that compounding factor maybe someone better at Stats than me can work out if this correlates to the "over-diagnosis" numbers that they say has happened in a similar time frame?

Are they really doing this just so they don't have to spend on supporting SEN in schools or regulate the independent SEN sector? I can't see any other benefit at all to ignoring the effects and not resolving the root cause, or at least primary contributory.

This article, published in Nature (ie a reputable source) in Dec 2022, doesn’t support a causal link:

“In summary, this study provides no evidence to support any relationship between maternal iron status during pregnancy and symptom severity or risk of ADHD symptoms in 7-year-old children.”

https://www.nature.com/articles/s41598-022-23432-1

That is just for ADHD and assumes it is diagnosed by age 7. Karolinska Inst. (whose study includes intellectual disability and autism) is hardly an unreliable source. If you add the covid studies mentioned, surely it should be taken seriously as having an effect. I don't understand why they didn't fully rule this out with a study rather than funding a study to support over-diagnosis.

My ferritin is 6 and my hb is 122 and they won't give me an infusion this time because I'm not anaemic. I think hb has to be 120 to be classed as such. I'm waiting for an operation that has been cancelled once because of my low ferritin but the anaesthetist has now decided that he is happy for it to go ahead.

I'm taking the oral spray at the moment along with a glass of orange juice and more red meat than I would like a week. One Dr suggested the iron fish that you can cook with. Previously they were happy to give me both injections and an infusion, so I'm not sure what's changed now.

I've had low ferritin for years and it's only recently, since we have had two female GP's join our practice, that they have finally decided to investigate what might be causing it and are sending me for scans and have run tests to rule out various things.

I absolutely agree the impact should be studied.

The NHS have a woeful record / blind spot re nutritional deficiencies- on a personal level I had a ferritin level of 7 and was told by a GP to go and eat a steak. I know of many others with similar stories (found in a support group on FB which I turned to when my GP could offer no help).

I’m just saying that iron deficiency in pregnancy does not mean (based on current evidence) that the child will definitely develop/be born with ADHD or autism.

Sorry havnt read the full threat but wanted to say I had a transfusion and it barely moved my ferritin levels I think I went from 7 to 11.

they don’t like giving them as they can cause your arm to go orangey/brown sometimes for no apparent reason and I don’t know if that’s a permanent thing or just something that lasts a long time

I havnt found anything that helps me properly yet although people keep telling me to try nettle tea

I get that, but some research does suggest it increases incidences at a relatively high rate. When we are dealing with a study that has literally just questioned why we have a higher rate than expected for SEN, you would imagine the Health Sec might look at some biomedical causation rather than "it's all in their heads".

also suggesting ferric maltol as mentioned by @Dunnow1, DH gets this one (cancer patient, throat cancer, which also causes gastro issues) and it's been a massive improvement.

Please do get yourself checked for Coeliac disease if you are iron deficient.
Coeliac disease is a serious autoimmune disorder that affects 1:100 people but sadly only one third of sufferers are ever diagnosed.
My daughter had no bowel symptoms with her Coeliac disease, only iron deficiency and joint pains.

www.coeliac.org.uk/app/uploads/iron-and-iron-deficiency-may-2024.pdf

I have open access to book into a small day unit at my local hospital when my haemoglobin falls below 8 (or 80 depending on which scale you use). I have my bloods taken every twelve weeks to check.
They never infuse based on ferritin. I live with that in single figures.

Saw my GP yesterday about other things but mentioned the iron infusion. Currently 12 month waiting list here. She did recommend something called blue iron from Holland and Barrett - apparently better on the stomach if you can’t tolerate oral iron. Takes longer but definitely helps.

My haemoglobin was 99 (should be 115), ferritin 6 and they still didn't recommend infusion. I did manage to get both my hb and my ferritin up with supplements over a period of 8 months, but only as far as 21. I then needed surgery and 21 was judged to be too low, so I had two infusions, one week after another. I don't know what my level went up to - it was tested but no one gave me the result. I have to have another surgery in the new year, so they'll check again at that point - I'll be curious to see what it'll be then.

This is an issue that has bugged me for a while as I know quite a few women who have struggled very badly with low ferritin levels, who have been fobbed off repeatedly by doctors. Is it because low ferritin is something that tends to affect women and not men? The understanding of how low ferritin affects your overall health seems to be very very poor among doctors. At the same time I understand the reluctance to give infusions - they are expensive and time consuming and there are a number of risks, including serious allergic reactions. The general belief is that because you can treat it with very cheap supplements, an infusion is massive overkill. The problem is that there seems to be no recourse for people who have tried supplements and get no result from them.

Thanks for the info, a year is not bad, I am researching private options, it's just frustrating, as my private healthcare costs are adding up each year but this seems like the safest option for the baby.

Yes, I feel the same, that the root cause is always being overlooked. GP said maybe heavy periods and offered the coil (she knows we are planning on getting pregnant next year, so don't think messing with my hormones at this point is a good idea anyway) ... I do not think it's heavy periods though.

Good luck with everything next month and hope it all goes smoothly for you x

I’m having one on Wednesday after a three week wait. Prescribed by gastro as despite treatment with oral iron over several years I obviously don’t absorb it. Ferritin 15, not anaemic and GP ignored. Consultant agreed due to failure of oral treatment, fatigue and hair loss. Desperately hoping it helps. Has not been above 20 for 15+ years

Do you know why your ferritin level is low? Has the cause been investigated?

OP, Floridix with Iron, a liquid that is perfect for upping your numbers.
I snacked daily on pumpkin seeds and dried apricots.
I had a small glass of fresh orange juice when I ate meat to help absorption.
I washed and fried fresh spinach in a little butter and squeezed lemon juice and black pepper over it, several times a week.
Within one month of the above my iron was hugely increased and i felt like a new woman at 7 months pregnant.

GP suggested heavy periods and to go on the coil, but whilst my periods are heavier than what is the published 'average' is, I don't think it's that. I have also heard horror stories about the coil. It's difficult as the NHS seems to just throw treatments at you without getting to the cause... and I've made this mistake in the past when it came to my health and am ultimately paying the price years later for not insisting on investigations and instead just accepting medications etc.

This is promising, thanks for sharing, and good luck with the infusion!

Im also having gastric surgery on November the 5th to remove a slipped gastric band possibly causing my iron problem so I plan to ask gastro if they can give me an iron transfusion also.