Anaemic and can’t tolerate iron

[Nowmum43]

I have always been anaemic on and off throughout my life and cannot take iron.
i was diagnosed again in November and said I would try liquid iron, Dr suggested taking this before bed and that should lessen symptoms.
i took it for 5 days and didn’t sleep! I felt so nauseous 24 hours a day, crippling stomach ache with and urgency to go to the toilet.
she said to stop it and book an appointment with a pharmacist. I haven’t as I am not sure what else they can do.
last year I asked for an infusion but as I wasn’t officially anaemic at that point they refused.
just after any ideas how I can up my iron without taking iron!
I am vegetarian but have a pretty decent diet (most of the time)
I am exhausted to the bone and wake up everyday feeling like I’ve drink 10 pints the night before!
I just want to have some energy

Sorry if I’ve missed it but will the GP not refer you for an infusion? This way there will be proper monitoring during (my DD had a funny reaction) and after?

I looked at that website and I can't see iron transfusions only vit drips?

I had issues taking iron, I would get awful stomach pains and urgency for the loo. A pharmacist told me to take the tablet with a small glass of orange justice. It worked brilliantly and had no problems at all.

@Nowmum43

I am vegetarian but have a pretty decent diet (most of the time)

What does this really mean?

Is it not possible to include more sources of iron in your diet?

It says iron infusion £120

I have been trying for a year now to get them to give me an infusion and they won’t. Not sure why

Active Iron is really gentle - it’s a bit pricier than some of the others but well tolerated. They sell it in boots. I ended up in crippling pain when I took the stuff the doctors prescribed.

As another poster said, less is more when it comes to iron. I take one tablet ferrous fumarate every other day.

However if you are very deficient and intolerant of oral.iron you should be able to get IV iron. Google your local.guidelined.

There are huge disparities here in prices, posters paying 800quid and then this place is 120?

Whats that about?

I had a private iron infusion recently (also in Yorkshire area) it was 485 including consultation. Just a small clinic but monitored properly. Can't say whether I feel much better yet as there's been other stuff going on but was v straightforward and got in within a few days which was good.

It is a huge difference - worth asking the cheaper place which infusions they offer and at what dosage. Unless they use Ferinject or Monofer (perhaps there are similar ones) I wouldn't take it seriously.

@Nowmum43 I would ask them what iron infusion they use. Is it the same as you would be offered in the NHS? Will they arrange follow up blood tests as part of that cost? It states it is pharmacist led - do they have life support training and equipment on site. Anaphylaxis is a rare side effect of the “proper” iron infusions.
Do they need to be registered with any quality assurance organisation and are they? Ask to see some written information about the iron infusion - to properly consent you should be told about potential hazards/risks as well as potential benefits.

vitamin infusion clinics are likely unable to give the prescription only iron infusion.
this should be given in a clinical setting only as the (rare) side effects can be severe. this is why it costs so much.

Check the nhs information about iron infusions - there are side effects and dangers, normally in the NHS you’d be monitored for about an hour after having the infusion, and warned what to look out for afterwards. A real iron infusion (not just a vitamin IV drip) is quite a big deal.

This is really good to mention. I also had a bad reaction to Ferinject. I didn't end up in hospital, but felt absolutely awful for weeks.

Another thing to throw into the mix: not only can I not tolerate iron in any form, even when I do take it, it doesn't elevate my iron levels at all. I was doing some research online and found that if you have low copper levels, you won't absorb iron efficiently. After my last infusion I started supplementing with copper and it seems to stabilise my iron levels. Maybe I'm even absorbing iron now from my diet, I can't tell, but I haven't had to have an infusion for a couple of years now.

My teen DD had one at the iron clinic Harley street yesterday. Hers was £590 as had a smaller dose due to her weight. Money well spent as she’s been struggling for years and NHS don’t care sadly. £150 seems cheap, i’d ensure its doctor led. My teen has some elevated liver levels so I wanted doctor advice on whether this was right approach. Fortunately her father reimbursed me. She may need another, will check in 3 months

Hi all just wanted to update.

Taking the gentle iron didn’t work and I had ended up to the point where I feel constantly like I going to be sick and the exhaustion is becoming difficult to live with!
I went to a wonderful doctor on Friday who is re sending me for bloods and then going to do everything she can to get me an infusion. She was furious that when I have asked previous doctors that they have refused to even refer me for one!

I am feeling a little bit more hopefully and hoping I finally get that long awaited infusion

Good luck @Nowmum43 I had bloods done in January after feeling awful for quite some time. My ferritin came back at 5 and my serum iron below range. My GP marked them as borderline and sent me a text to say eat more iron rich food.

I managed to get an iron infusion via my work private health insurance about four weeks ago and feel so much better already. The haematologist recommended taking iron supplements three times a week post infusion until my ferritin is at least 80.

I’ve always struggled with the gastric effects of tablets so am taking heme iron which I know isn’t suitable for you as a vegetarian but there have been no side effects so far.

I really hope you manage to get referred via the NHS, it’s totally baffling why they are so reluctant to give them when they’re life changing. They’d rather leave women, and let’s face it, it is predominantly women who suffer from horrific low iron, until they are barely functioning. Anaemia can be really quite serious if left untreated.

I had my infusion yesterday
feel absolutely awful today but hoping that is just part of the process.
i am excited to feel human again!

Have you tried ferrous fumerate?
I couldn’t tolerate ferrous sulphate, terrible on my stomach and avoided taking it, ending up very anaemic. I was then prescribed ferrous fumerate which had no side effects at all for me.

Hope you bounce back quickly, glad you got it sorted!

I did try this and it still made me feel really unwell

Great news @Nowmum43 I felt bloody awful just after mine so it’s not unusual. Think it’s called iron flu. You should feel better in a couple of days.

This makes me feel more positive. Thank you x