For wanting an iron transfusion now

[rainraingoaways]

Been with lowish iron levels most of my life due to heavy periods but through vitamins and lots of steak as ferrous sulphate makes me very sick. I’ve managed to keep them up just enough to be ok. After my pregnancy I was given ferrous sulphate as i lost loads of blood and although it made me so nauseous and constipated I carried on with the dosage I was given as I’d lost so much blood I needed it badly. I got so run down after my pregnancy and everyone kept telling me I was just exhausted from my baby. I knew something was up but was dismissed until I insisted on an iron blood test. I also suffered from pnd as I just felt so weak out of breath and exhausted constantly Turns out I was severely anemic and sent straight away for an iron transfusion. After this I never felt better felt so good and energised. Since then my periods are still extremely heavy even with transanamic acid. I’ve been so exhausted as of late I’m getting nine hours of sleep napping when baby is at nursery so out of breath having to sit down after a short walk. I requested another test and low and behold I’m low again not as low as last time but borderline. I’m really scared of getting worse again I burst in to tears on Tuesday as I just had to sit down from walking up the stairs and my baby was screaming at me over wanting to be carried back down stairs. I’ve got a call back regarding my results on Monday and I know they won’t offer me a transfusion until I’m under the limit. They will suggest I take some iron from the pharmacy but it makes me so nausea all day every day and the lower dosage that I’m on just isn’t enough. I’m trying for another baby so waiting for that to happen and then I will be stopping my periods. I have some small savings so have considered paying privately for one but it’s a huge cost.

I felt exhausted and breathless with a ferritin level of 13 - I suspect it’s very individual. My GP wasn’t interested once a FIT test had come back clear.

Mine was 11 and they wouldn't offer a transfusion. Try iron bisglynicate, it's not as harsh.

I lost 2ltrs of blood during an emergency c section. That was August 2023. Felt horrendous. Couldn't lift baby bc ny arms were just too weak and I wanted to sleep all the time. Felt like I'd ran a marathon just walking into the kitchen. Went to gp & they took my blood
My iron level was at 2.
That was in Feb 2024 & they're still making me take iron & folic acid tablets now. It's never risen above 6 as my periods are horrendous too. Still won't give me friggin infusion.
Moved areas and under a new drd now. Going for chest xray & bloods took monday and appointment friday to discuss the results. Been a woman sucks

Evidence please

I am apparently "a little anaemic" (I have chronic kidney disease and it showed up on my latest routine blood test). Apparently the iron level was OK but the haemoglobin was low. This has never been mentioned before but could explain why I’m getting so tired and easily breathless.

My consultant has ordered me an iron transfusion because he said they work better than taking tablets. So it can be done - it just needs a doctor with the will and authority to prescribe it. I hope you get sorted out soon.

My iron was 5. Before they agreed a infusion

I have endometriosis and my ferritin is around 4, I had the infusion twice and they didn't really last.

I get 6 monthly blood tests done, and 6 monthly endo internal scans done. It's pretty shite tbh!

My ferritin is currently 6. I was referred last month to haematology in the “hope” (gp’s words) they will give me an IV. I’ve been on iron tablets for 6 months. I have to wait until May for that appointment so I’d not get your hopes up for one immediately. (I’ve actually gone private but been advised to keep NHS appointment as they think I’ll need another).

Same as @ChillyBhere. My ferritin is 5 and haemoglobin 86. Been like this for 2 years. Tried so many types of different iron supplements but nothing works.

Finally got referred to gastro for an infusion - the average waiting time is 18 weeks.

Have you tried Iron bisglycinate, it is easier on the stomah. Also have you joined the Iron protocol facebook group? There are guides to read and lots of helpful advice if you ask for help.

The NHS is utterly useless at treating anaemia and iron deficiency. They’d far rather you destroy your stomach with harsh tablets for months/years than give infusions which work really quickly.

I had a blood test in January after suffering from massive hair loss, extreme breathlessness, exhaustion, horrific itchy skin and constant mouth ulcers. My ferritin was 5 and my serum iron way below range. My GP marked my results as borderline and suggested I eat spinach!

I used my work private health insurance and spoke to a haematologist. She said even if I could tolerate tablets, which I can’t, I’d be looking at two years to reach optimal levels. With diet alone, it would be impossible.

I had an iron infusion in February and feel better than I have done in years.

The clue here is in the words “my consultant”.

GPs can’t always refer for infusions in some areas. Where I work it has to be done via haematology, gastroenterology or oncology for example.

I’m just going off what my GP told me but she used to be in obstetrics and gynaecology. She said my levels of 23 fell within normal range but that for menstruating women that was often too low to feel normal and well.

I went on iron bisglycinate with vitamin C which made me much better and restored my levers to 140 before my next pregnancy.

she said the scale didn’t differentiate between genders. Perhaps that wasn’t truthful of her to say.

This. I think our treatment of women with iron deficiency is appalling.

14 is absolutely low.

I had a private iron infusion and it was so worth it (my ferritin was lower than yours, OP, Hb was similar). No regrets. Also got a Mirena and it helped hugely.

I'm in a similar situation. My ferritin has been around 9 for years.

Can't stomach oral iron, have had stuff like celiac ruled out as I am also deficoent in b12.

My fatigue is awful and my life has changed so much because of how exhausted I feel all the time. Like I'm living in a vat treacle.

I'm curious how much a private infusion is but I probably can't afford it.

I think I paid around £750.

I know my GP would look at the history, see that oral options aren't suitable, that a transfusion worked well previously, and just go that route again.

I can see the sense in trying the oral route first, but theres absolutely no logic to them insisting on that again given the know you're fine with an iron transfusion previously and the oral option doesn't work for you.

You may need to remind them of these details of course!

I’m currently at 7 and getting a transfusion Monday. Took a lot of back and forth and the only reason I’m getting it is I have been diagnosed with ARFID for over 30 years, have coeliac disease and can’t take tablets due to chronic constipation. Last had it 3 years ago before the coeliac diagnosis and wasn’t half as difficult. I should be cleared now to have them 2 x a year if needed as the consultants at the hospital have agreed.

It’s so hard to get now.

OP.........I cannot tolerate ferrous sulphate for the same reasons as you.
However, I have been taking "gentle iron" ie, iron bisglycinate for six months with absolutely no effects whatsoever. I definitely recommend it.

Gentle iron refers to iron supplements, typically in the form of iron bisglycinate, designed to be easily absorbed while minimizing the gastrointestinal side effects—such as constipation, nausea, and stomach pain—often caused by traditional iron supplements like ferrous sulfate.

I do take gentle iron but it’s not a high enough dosage according to the doctor. my ferritin got as low as 4 last time and the haemoglobin was really really low in the end. It’s all been sorted my husbands private bupa thing through work so all I have to do is pay the excess doctor was really lovely. Got a call from my gp booked for Monday so will see what they say first. But if no luck will pay the excess. Thanks to my husband for reminding me as I always forget we have bupa due to it increasing our premiums and excess but after how terrible I feel it’s seems a worthwhile cause to use it.

Geez the people saying Ferritin of 14 isn't that bad 🙄🙄🙄. It's just above the NHS threshold and as other have said a level of 50+ is good for health and energy.

Sadly NHS support in this area is poor. You can try different versions of Iron, taken on an empty stomach, with Vit C... and save for private infusion.

https://www.youtube.com/live/x4XlD4QrqIM?si=j0qAxe7_XAWVBfVP

Crikey my Ferritin is 11.40ug/l according to my test results. Apparently I’m not low enough for anything. Although my Haemoglobin is fine at 38mmol??

Are you mixing up Hb and HbA1c - the latter is regarding diabetes which 38mmol is an appropriate value. If it was Hb was 38, I’d expect you to be in hospital as an emergency, deathly pale and bleeding out from somewhere having urgent blood transfusions.

Probably!

You may as well have this too. I haven’t a bloody clue and my GP just said all fine! 🤷🏼‍♀️