Iv iron - where can I get?

[Tiredsotired23]

i have anemia and I don’t absorb iron. I’ve had enough of feeling so rubbish and want iv iron. My gp won’t refer. Where can I go? I’ve seen the iron clinic in London online. Is there anywhere else that’s less pricey?

Why won't your GP refer? What are your Hb and MCV? Why don't you absorb iron? Do you understand the risks of IV iron specifically? Lots of questions before I'd feel able to advise.

I’ve been taking iron since I had my son who is now 11. In various forms and strengths. My levels don’t get above 16. They are currently

ferratin 8.3 (low)
mcv 93
haemoglobin 112 (low)
MCHC 309 (low)

also free thyroxine and vit d low. TSH 1

i have all the symptoms and have been struggling for years

gp won’t refer as says iv is only for extreme cases. I’m happy to pay for it. He just wants to stop my periods. He says I do absorb iron but must lose it through periods

I just can’t go on like this. I need to feel alive again

I honestly can not believe GPs allow people to suffer like this, and for a long time. Until last year, my gp let me suffer for over 3 years with ferritin below 3. They just wouldn’t refer me. I felt like whit for a long time. Luckily, I was also under gynae due to heavy periods and he happily referred me for an infusion. Are you able to ask for a referral to a gynaecologist if you are having period issues? Say you would like your gynae issues investigated and see if they could then refer you for an infusion? But if you do pay privately, the iron clinic is supposed to be good. Look at Sally Jacks channel on YT, she is a tv presenter and had years of low iron, she too was let down by her gp so went through the iron clinic, she has a clip of her infusion on YT. I hope you get somewhere with it, low iron and low stores are awful. I didn’t realise how many issues with my health were related to my low ferritin including aura migraines.

Sorry, I see you mention the iron clinic. I don’t think there are many places offering private iron infusions tbh.

Iron infusions can have nasty side effects. I'd try a different GP over a private clinic first. Or try a different form of iron? I use Syton which is (prescription strength) liquid and has been really helpful for me.
https://www.chemist-4-u.com/sytron-elixir-500ml?gclid=Cj0KCQjwla-hBhD7ARIsAM9tQKufRN9tp4ufcpnrSShilOmCjb_2iHmi-jKP-YFJQcPTXJhrEriSER4aAgLREALw_wcB

I’ve tried every formulation of iron as this has been going on for over a decade🙁

iron infusion have a (small) risk of severe allergic reactions. it needs to be given in a place that is set up to deal with these.
usually that means hospital outpatient.

tbh I would give the place a call. but be prepared that it will be quite expensive.

I work in a hospital and we wouldn’t give IV iron for the blood results you have posted.

I looked into them a few years ago I think it was almost £1000 per infusion and regular blood tests which cost over £200 each.

Have you tried taking vitakin d? Nhs recommend taking it everyday in winter

Was just thinking this.

I've had a permanent black mark on my hand since they gave me IV iron and it leaked into a vein... been there 4 years now

I’ve got permanently low iron - it can be a sign of lupus and other autoimmune issues. You need further investigations. I don’t have periods (been on the mini pill for years and now menopausal at 42) and I am still anaemic, have been all my life. When I was pregnant with my daughter I had daily iron injections, Jectofen but I don’t think they do these anymore. What has been a game changer for me is taking a lower dose daily, rather than the short term higher courses. As I would take a higher dose course and would then stop and it would return. I now take 210mg ferrous fumerate daily long term and it’s been keeping me fairly stable.

I got an IV iron through GP but my ferritin and HB levels were considerably lower than yours but I wish I’d just went private a few years earlier as I’d been feeling crap for years with hindsight and struggling with various iron tablet types unsuccessfully. I think as well as the iron clinic there might be a place in Manchester but also perhaps worthwhile giving BUPA or Nuffield a call as I’m sure at the time I’d read Nuffield offered it.

The one iron supplement my stomach has been able to tolerate is floridix but by the time I’d discovered this my iron levels were just too low.

i can highly recommend the iron infusion if you can get it and also the newer brands are less likely to cause allergic reactions.

in my case I developed a hiatus hernia from pregnancy and bad morning sickness and take reflux medication for that - I’d been taking tablets just whenever I remembered for years but now am aware they impact iron absorption so I’ve been much more regimented in my approach - multivitamins with iron in the morning with breakfast and fruit or vitamin c drink to help absorption then no coffee or tea for a few hours to let that absorb and no reflux medication until a few hours after main meal. My iron levels have managed to maintain what they were after the iron infusion for over a year now so hoping that approach will maintain things. Maybe worthwhile also looking at when your taking supplements, making sure no tea or coffee for a few hours afterwards etc.

I don’t think you need iv iron

Looking at your results, the reason the GP won't refer you is that you probably don't meet the local referral criteria. I'm sorry you feel rubbish, you could look at private clinics and see what their policy/ criteria are.

I don’t think my iron results are the worst thing in the world but the crushing fatigue and freezing cold is. I can’t even play with my kids or go anywhere anymore. I wake up tired after 14h sleep.
im not looking for it free on the nhs. I just want to pay and get fixed.

I’ve taken iron in various strengths and formulations every day for more than 10 years. I still am. I’ve followed all the advice about vitamin c and caffeine and empty stomach etc

I also take multi vits and vit d high strength with k2. Yet these are still my results

i just want advice on where to go

What other tests have you had? I think you need investigation for Addisons, lupus, hypothyroidism, pituitary issues etc - your GP should be able to arrange tests for these if you haven’t had them done already.

Your MCV doesn't really fit with the low Hb and ferritin - have you had your B12 and folate checked?

I agree with a PP who has advised a second opinion before doing anything else - as a doctor I'd want to rule out other explanations for your tiredness.

Your TSH is good (at 1 - lower half of normal range), so I wouldn't be worrying about your thyroid.

This is what I think too @Xrays but he vertically laughed when I said that because my TSH levels are fine. I said isn’t that a sign of something being wrong with pituitary or something (low free thyroxine and not elevated TSH). He was adamant TSH is fine your fine

Virtually

I would be asking for a second doctors opinion or if you can afford it pay to see an endocrinologist privately.

GP’s only let women of working age suffer with anemia.

I used to work on a day procedure ward, if you are retired, over 65, have severe dementia, a bed bound 95 year old man, you will get an iron infusion. I used to infuse people with better numbers than myself all the time.

its pathetic. I’ve been anaemic since I started my periods.

@CakeIsNotAvailable

my b12 is 134 and folate is 5

ive had b12 and b vit injections. A few months ago Trying to sort out the tiredness