Anaemia and Iron IV infusion - can anyone share experiences please?

[WoolyMammoth55]

Hi all,

I've got Hashimoto's and anaemia. Feeling broken and exhausted. GP suggested that the combination of the 2 conditions both with fatigue symptoms could be the issue - thinks solving one might create a big improvement.

I've kind of exhausted options for treating the Hashimoto's so now trying to fix the anaemia. Oral supplements aren't making much difference to the levels so GP suggested IV iron but it would need to be private as no NHS provision for my circumstances.

It would be a stretch to afford it at our local iron clinic - £650, which we don't have lying around! Also Google throws up some scary side effects/risks.

Can anyone who's had one for any reason tell me (a) how was it, (b) did it improve your iron levels and fatigue, and (c) would you recommend to your loved ones? I don't know anyone who has had one so really keen to hear any stories from people who have.

Thank you! x

There is quite a lot to unpick here.

Why have you exhausted options for treating your Hashi's? If it's too complicated for your GP, which is quite common, ask for a referral to an endocrinologist and also join the ThyroidUK community at healthunlocked(dot)com. If you can post your last test results there together with the reference ranges, they should be able to help you.

Secondly, have a look at this:

cks.nice.org.uk/topics/anaemia-iron-deficiency/management/management/

Basically, your GP should refer if oral iron is ineffective. Infusions are usually safe and effective, with levels rising within about 48 hours. However, you should not have to pay if you meet NHS criteria.

Have you had vitamin D, B12 and folate tested as well. Where are they? Are they optimal? If not, that will create more exhaustion and fatigue than the Hashi's.

Ive had two iron infusions (not in UK). Both for anemia. They made a huge difference. Felt wonderful a few days afterwards.
slight metallic taste afterwards and told to take it easy for 24 hours. Highly recommend them.

Felt I was dying for a few years and all bloods were normal, thought it was CFS. Was referred to consultant who did extensive bloods and although my haemoglobin was on low side of normal, my ferritin was dangerously low. I had an infusion and within 2 weeks felt AMAZING. I didn't keep falling asleep during the day, actually had energy and I could think straight. Had another one last year, both on NHS. No side effects at all.

I had a total gastrectomy so need regular infusions for life. Why won't the NHS provide them for you? I know GPs can't prescribe them but consultants can.
I have no problems with them but get a headache for a couple of days afterwards. Fatigue wise I don't notice the difference because I have three types of anemia and chronic malnutrition.

I've had two iv iron infusions, a year apart, in the UK, both my gp referred me for. It made a huge amount of difference. I would push to be referred

Oh, and no side affects as far as I am aware

I had 3, they helped with me getting completely out of breath from walking, but honestly made zero difference to my fatigue. I have CFS, complex regional pain syndrome, anaemia both iron and b12 few other little things. I'm not in the UK. I had 3 infusions done in hospital, there was a long wait to get it done the forth time and my GP wasn't happy to do an infusion in the clinic after I reacted badly to my 3rd infusion, I was really sick for several days, but was happy to do an iron injection instead. This wasn't expensive at all, I don't know if that might be an option for you? My irons stayed good for longer this time as I also got a more permanent form if contraceptive and don't get periods anymore.

There are things you can do that might increase your bodies ability to absorb iron from supplements if you're not already. Things like using an iron in a form that's more easily absorbed like iron polymaltose. Taking vitamin C with your iron supplement and avoiding having dairy or anything with calcium for an hour or two after and before.

I've had 3.

I felt incredible after each one but for whatever reason - the benefits didn't last for long so it all felt a bit pointless really.

But that's just me and they're still trying to work out why my body doesn't absorb it