Iron infusions on NHS

[ThatKindBiscuit]

Just wondering if anyone has any tips on actually getting an iron infusion on the NHS (can’t afford them privately unfortunately!).

Ferritin levels have always been a bit borderline but after 2 miscarriages earlier this year, one of which required an ERPC, my ferritin level is currently sitting at 6 despite 6 months of iron tablets. I tolerate the iron tablets fine but they are having zero effect on my ferritin level. Ferritin was 32 pre miscarriages, 12 after miscarriage number 2 and now 6 following treatment. Haemoglobin was 146 last year and now is 129 so technically “normal” but has clearly dropped and is dropping quite significantly. I feel absolutely horrendous, I’m pale with dark circles so people constantly ask if I’m ill, exhausted all the time, hair is falling out in clumps, short of breath- I’ve went from running half marathons to not being able to run a kilometre, I have brain fog and pains and just feeling rubbish. GP is insisting on another course of iron tablets and says I’m not entitled to an iron infusion because my haemoglobin is normal (despite evidence its dropping!).

I’m reluctant to waste another 3 months when it’s clearly not helping because I feel awful and also I’ve read about low iron causing fertility problems and now wondering if this is why we haven’t fallen pregnant again and at 34 don’t want to waste more time. Has anyone managed to get an infusion with low ferritin and normal haemoglobin on the NHS? I think I’ll cry if I have to keep feeling like this!

No unfortunately. Even at 38 weeks pregnant, with ferritin of 8 and haemoglobin at 106, I could not get one. It's really only haemoglobin they care about, so you need to get it under 105 (or 110 if not pregnant I think)?

Do you take the iron tablets with vitamin C and away from any other food? Have you tried more bioavailable forms like bisglycinate?

Also re affording a private infusion... It would be around £800 I believe, and is a one-off cost. I fully understand that many people don't have this money, but if you can't afford this, how can you afford a baby? They cost a lot more!

I managed it after my haemoglobin dropped to 75. They didn’t want to know before then despite ferritin of 3 for years.

Google your trusts criteria for referral, mines a Hb below 80. The hospital will reject referrals if you don't fit the criteria

There is a Facebook group called The Iron Protocol, run by someone who isn't a HCP but seems very knowledgeable (has studied all the data). The group appears a bit "culty" at first glance but there are really detailed guides on the original (US) version of the site about improving how much ferritin you can absorb orally.

Of course, an infusion would be preferable but if that genuinely isn't an option, I'd suggest reading through those guides. I thought I knew a lot about oral iron supplementation but still learnt a lot.

I had one on the NHS, but had to wait til haemoglobin dropped to 115, and very low ferritin as well. I had to then show I'd tried three different preparations of oral iron, on different dosing schedules (every other day, twice a week, etc), with or without food, and still had intolerable side effects (that were likely to increase the anaemia if they continued). After a rejected referral when Hb was barely normal, then accepted once it had fallen, then three months waiting list, I finally had it done. Given the time beforehand waiting to get my GP to agree to test ferritin etc, it was probably a whole year of knowing I probably had low ferritin and feeling lots of the symptoms, to finally having the infusion. Starting to see improvements now a month on.