Experiences of private iron infusions for low ferritin and heavy periods

[Sleepy21]

Looking for peoples experiences of iron infusions - I have a ferritin of 15 and I cannot tolerate the iron tablets GP gave me - I am taking iron bisglycinate but it will take forever to build up especially as I have quite short cycles and fairly heavy periods. My haemaglobin is 127 so NHS won’t give me one so will have to pay privately. Thank you!

Sorry no help with private infusions , but my ferritin was 6 and managed he higher it with tablets . Have you tried taking it before bed with orange juice . Seemed to stop any. Stomach issues.

Tablets of any kind didn't seem to help me. I had an iron infusion and it has made such a difference. Low ferritin can also cause heavy periods. I did have a D&C around the same time, so don't know if that has made the difference, but my periods have been lighter since.

Ferritin as low as 8 here, have successfully gotten it up with ferrograd c several times but keeping it up is the trouble! Have had 2 x iron infusions and they give an amazing boost but again, just don't last.

Key thing in my opinion is getting the heavy periods under control - have you tried tranexamic or mefenamic acid? If you can tolerate birth control and it helps getting the periods flow down, I would really recommend. I've been aneamic my entire life it seems but it was only after having no period for a year while breastfeeding that I made the connection with my heavy flow.

I had very heavy periods and a low ferretin of 7 a few years ago.I was feeling awful and couldn’t see how iron tablets would work. I contacted a consultant at Spire Hospital in Manchester who was an expert in this. I had to provide recent blood results and a telephone consultation. I had the infusion a few weeks later and felt like a different person a few months later.Best £750 I have spent.My ferretin level went up significantly,I think to about 130 ( which was too high)
I don’t know what my levels are now,3 years on ,but feel like they must have dropped again. Unable to get a GP appointment to check my bloods. Don’t you love the NHS🥺

If you can afford a private infusion then go for it, when I had infusions I felt amazing. Ferritin is dropping again now but still within range so no infusion, doctor instead told me to try some new kind of nano particle iron pills to see if they help (everything else I've tried I've not tolerated)

Different country but I’ve had iron infusions and I love them. Can’t tolerate iron tablets. Cost about $200-$250 AUD so much cheaper than the UK.

Try to get your periods to be lighter through contraception or tranexamic acid so that you’re not losing so much iron. My iron level has been much better since I got a Mirena and I stopped having periods.

I can understand why you’re considering an infusion if the tablets are difficult to tolerate, especially with heavy periods. It might be worth discussing the options with your GP and asking whether the cause of the low ferritin can also be addressed, rather than just replacing the iron.

Dd has recently had 2 private infusion. Her ferratin was 5.

are those the sucrosomial iron or liposomal iron? I've read about those but not had the doctor recommend any - can they be prescribed? They don't seem easy to come by. I've not tolerated any of the supplements either. I used to be fine with them, but this past year, not any longer, and I've tried several types. I will have an infusion eventually but once I've had it, I think it's unlikely I'll get a further one on the NHS unless my levels get this bad again, so I'm hoping to try to keep them topped up and hoping that a smaller dose will be tolerable yet enough to maintain levels.

No, it's iron hydroxide adipate tartrate, its only available in a few countries at the moment, not sure if the uk is one of them. Was otc but the pharmacist questioned me and said they can only sell it to people who are definitely iron deficient but she was satisfied with me explaining the doctor told me to get it. Haven't tried it yet because I forgot to take it before I left for work but really hoping it works and doesn't fuck up my stomach.

DD got told to take sucrosomial iron and so far she's had no stomach issues but she doesn't remember to take it every day.

thanks. I've not heard of that one so not sure it's available in the UK. I think even the sucrosomial iron etc have to come from an EU source and ordered online. I doubt any of it would be prescribed here. I'm glad I finally got an infusion prescribed, but am hoping I'll find something I can take afterwards.

Hopefully the sucrosomial iron is helpful. The nano particle iron is really new, think it only came out last year, so might take a while to reach the UK

I haven't even found the sucrosomial stuff yet - I expect it will be quite expensive so maybe I'll be able to just take a normal multi vitamin/mineral with small amounts of the usual stuff in. I'm waiting til after the infusion to see what I can tolerate once I've had it and am at stable levels, and then see how much I need and whether I'll have to pay for more expensive stuff. Pretty sure no NHS prescription for anything like that - they wouldn't even prescribe any iron tablets even when ferritin was really low, as they said i could buy them myself, but other surgeries appear to so I guess it's locally decided.

I was offered infusions on the NHS as my ferritin was through the floor and I couldn’t tolerate iron pills prescribed by the doctor. The gastro offered me infusions or a new drug called ferracru and when I researched the potential problems with infusion I went for the drugs, which got my ferratin from <5 to 26 in a a couple of months. HB was just about ok but I felt like death.

Then I had an endometrial ablation, which solved the problem completely.

This was ten years ago now and I know it couldn’t be prescribed by my GP at the time and I had to make a right fucking nuisence of myself to get a referral but it was totally worth it.

I had a private iron infusion in February which took my ferritin from 5 to 135 after my GP helpfully suggested I’d be fine if I ate more spinach.

Currently keeping my levels topped up with Three Arrows heme iron from the US. It’s expensive but far less than an infusion and can be taken any time of the day and there’s no need to avoid tea or dairy. So far absolutely no gastric side effects either.

Thank you all for your responses - I am really considering doing this now, despite the very high cost! @Iheartmysmart yes, my GP thinks its ok now as my ferritin went up from 13 to 15, and 15 is now within range! @Nincompoo what were the potential problems with an infusion?

Anaphylaxis was the one that scared me off! Although, as I say, it was a long time ago.

anaphylaxis is definitely one. Also chance of permanent staining if the IV leaks, and creates a brown stain over your skin. Sometimes a reaction during the infusion that's not an allergy but apparently still makes you feel a bit weird, flushed, heart racing etc. Sometimes all your skin generally looking darker for a while (temporary usually). Sometimes low phosphate a few weeks later that can cause bone pain and so on. More commonly, a sort of 'flu'-like reaction a few days later that lasts a couple of days - that seems to be the main one that quite a few people get, from what I've read. Various other random symptoms in the days and weeks after. Most of these are rare, and apparently the bad side effects are very rare these days with the new formulations, but they are still a bit sobering to read!! It's why I'd want to have one in a clinic that has medical help available, rather than some of the more wellness-type ones (though some of those are medical as well). I'm a bit nervous still.

But also apparently for some people, massive massive improvements to loads of their symptoms.

I thought the range had been changed and ferritin under 30 was now considered deficient. Although the haematologist I saw privately is of the opinion 80 is the minimum for women.

I’ve had two iron infusions and other than a touch of ‘iron flu’ for about 24 hours a couple of days afterwards, absolutely no side effects whatsoever.

My first one was at the local hospital under the NHS and the second one privately at The Oxford Iron Clinic.

The positives have far outweighed any possible negatives in my experience.

Have some research and def agree about having one in a proper medical setting - I would feel too nervous to do it elsewhere! I feel nervous about having one anyway but I don't feel like I will ever get my levels up any other way - I think all this stems from heavy periods and I had a lot of blood loss apparently when I had my c-section. Sounds so stupid now but I never even thought to take any form of iron supplement until a few months ago when I learned I had low ferritin

I feel you OP. Mine was 8, felt horrendous and had to take ferrous sulphate for 4 months which I hated. Gave me such a sore stomach and volcanic black poo.
It went up to ‘within range’ and I was signed off as fine. Uffff

The same reaction I had to ferrous sulphate - such bad stomach aches and yes, awful black poo as well. What range did they get you up to? I have to say, I gave up on them quite quickly!

I was up to 32. Apparently normal. Although apparently for a very active 34 year old female it should be at least 70 to feel like you can function normally.
I used to be a competitive swimmer-can’t imagine doing that now. Although I am better than before.