How low would HB need to be to insist on iron infusion!?

[Newnamefor2021]

So, I've bled now almost everyday since August 2020. I was on iron until Jan 2021 for iron deficiency anaemia. I was added to the list for surgery in Oct 2020 (ablation, sterilisation and exploration). I don't tolerate iron well, GP has always said tough, just take it as much as I can as I am not anaemic enough for infusion. Iron makes me very sick, very painful stomach cramps, vomiting, upset tummy, just basically like a sickness bug. So it's pretty horrific for me.

I was due to get bloods repeated but there is blood vial storages so not doing unnecessary tests here and I can't ever get an appointment with my GP. It been an awful 15 months with bleeding, fainting and generally feeling so ill all the time. I'm sore from pads etc, I can't stand for ling which affects my jobs and my family life, I feel so helpless.

Anyway, had pre op this week, which is good (although I had pre op for another surgery I need in oct 2019 and I'm still waiting on that one). They did bloods and called and say my HB is 71, nurse said she will contact consultant and with levels that low she thinks they will call me in for infusions, which would be good, but I have to speak to GP first.

Just wondering what the clinical level where they are indicated are. I did try googling and can't see it, wondering how far off I am that I can try and insist they help me properly this time, I'd like to be able to not worry about fainting constantly and be able to cook without sitting on kitchen floor.

@jesstommin

My HB was 17 and I was given iron tablets. 4 weeks later it was 18 so I was given and iron infusion. I was then monitored every 4 months and it turned out I needed an iron infusion every 15 months or so. After 10 yrs I was finally given a hysterectomy in Jan 21, I'm close to being discharged and no longer needing infusions.

Wow 17! You win lowest. You must have felt terrible. I asked for hysterectomy but they want to try ablation first. Glad it helped for you. Terrible they leave women that ill.

@Blackopal

OP I think you need to push your GP hard now. Not being able to function and fainting regularly is not ok!

Low HB that is getting lower is serious, can cause heart damage and is potentially life threatening.

My HB 43 was due to heavy periods, fibroids, endometriosis and hormone imbalance.
All I knew at the time was I bled heavily and felt awful.

I am so sorry that you are dealing with this.
I am slightly horrified by the regularity that these threads pop up and women are being left to cope.

I always try and comment as I was just trying to carry on and not make a fuss untill admitted as emergency during covid for blood transfusions.

I feel like I haunt the anemia threads a bit but I just want to tell you all that you need to push for the care you should be getting.
In this area GPs seem to be very blasé about women wandering around fainting and losing serious amounts of blood!

I'm so sorry. I can't believe how many people have or had significantly lower than me, it's crazy it's allowed to happen. I can only imagine how you must have felt. Given how awful I feel.

Yeah I was shocked that the GP didn't seem bothered by my fainting. Or the hospital for that matter. It's been a fairly regular thing for me for over a year.

I have children with additional needs including autism and it's quite easy to just forget myself in all that, but it's also extra hard as they don't understand and get scared when I bleed through everything and faint. Or have injuries From fainting.

I paid for a private iron infusion last week as I knew I wouldn't get one on the NHS and I can't tolerate iron tablets. It wasn't cheap (£770) but I'm happy to send the details if you're interested.

I'm not sure I'd have another one as I've found the side effects pretty horrid but if you've had one before then you know what to expect!

@Blackopal

OP I think you need to push your GP hard now. Not being able to function and fainting regularly is not ok!

Low HB that is getting lower is serious, can cause heart damage and is potentially life threatening.

My HB 43 was due to heavy periods, fibroids, endometriosis and hormone imbalance.
All I knew at the time was I bled heavily and felt awful.

I am so sorry that you are dealing with this.
I am slightly horrified by the regularity that these threads pop up and women are being left to cope.

I always try and comment as I was just trying to carry on and not make a fuss untill admitted as emergency during covid for blood transfusions.

I feel like I haunt the anemia threads a bit but I just want to tell you all that you need to push for the care you should be getting.
In this area GPs seem to be very blasé about women wandering around fainting and losing serious amounts of blood!

No one has ever tried to explain my symptoms other than heavy periods. I get night sweats too. I'm also very hard of hearing and my hearing loss is accelerated by hormones and my EMT consulted advised against contraceptives especially while waiting for the survey to hopefully stop my hearing loss taking all my hearing, which is almost has in one ear. But been waiting for surgery for that for 5 years now. So it's all sorts of things fighting against each other. I want to persevere as much hearing as I can but I feel because I don't take the IUD option then no one cares. They also make my mentally unstable but no one cares, I have no issues when not on hormones but on them I'm Really mentally unwell, but again, they don't care.

So weird and like someone else Said, they wouldn't treat a man like that.

Mine was 78 post ds1, the doctors said they considered transfusions but they looked at ferritin (they looked at stored iron levels so might be serum iron as well, I don’t know) and they were ok so didn’t transfuse. Midwife who visited wasn’t sure that was the right call and explained very helpfully that I would feel hit by a bus for the first month and see my new mum friends recover and start going out and wonder why I didn’t feel up to that. I think 75 they’d have done a transfusion.
Currently pregnant this time in aust and my ferritin levels came back at 12 or 14 and should be over 30, I forget as I haven’t seen them, obstetrician called and told me I had to start taking iron now. I should have asked hb! He also said we’d check again in 3 weeks and then would talk about a transfusion, but I assume he meant if they were lower again. I don’t really understand ferritin levels but don’t think 12 or 14 is transfusion level.

I can't believe all you are coping with. Looking after your children and fainting, that's terrible.

I look back now at the blood loss and how I simply dragged myself through every day.
I have now had a hysterectomy and am on HRT for imbalance. Life is very different.
I hope you are able to get the care you need and can say the same soon.

You need a blood transfusion not an iron transfusion. I think they would give you iron if your ferritin was low but if your haemoglobin is only 71 you will almost definitely need a transfusion before surgery. It's not something your GP would organise though, should be the hospital as you would need to be admitted for it.

@timeisnotaline

Mine was 78 post ds1, the doctors said they considered transfusions but they looked at ferritin (they looked at stored iron levels so might be serum iron as well, I don’t know) and they were ok so didn’t transfuse. Midwife who visited wasn’t sure that was the right call and explained very helpfully that I would feel hit by a bus for the first month and see my new mum friends recover and start going out and wonder why I didn’t feel up to that. I think 75 they’d have done a transfusion. Currently pregnant this time in aust and my ferritin levels came back at 12 or 14 and should be over 30, I forget as I haven’t seen them, obstetrician called and told me I had to start taking iron now. I should have asked hb! He also said we’d check again in 3 weeks and then would talk about a transfusion, but I assume he meant if they were lower again. I don’t really understand ferritin levels but don’t think 12 or 14 is transfusion level.

She said everything was low. I struggle to hear as I'm hard of hearing and was an unexpected call.

Sorry you are going through that, I've had iron infusions in all my pregnancies as they seem to take more notice then but when I'm not pregnant it's a fight. Hope you get the help you need too and feel better.

@Blackopal

I can't believe all you are coping with. Looking after your children and fainting, that's terrible.

I look back now at the blood loss and how I simply dragged myself through every day.
I have now had a hysterectomy and am on HRT for imbalance. Life is very different.
I hope you are able to get the care you need and can say the same soon.

I think women just do that don't we? My husband starts work early and finishes late everyday so if I didn't then things couldn't happen, children wouldn't get to school etc. But it does have a big impact on everything and I find myself struggling with simple things like house work and walking. My own business was hugely affected by Covid and I've not done much to pick up back up since as I just don't have the energies I need. I've put on weight and that obviously affects my mental health and assuming my health. It all impacts each other doesn't it?

Does the HRT help? I've been having nighty night sweats, I'm 37, but wondering if I'm going though early menopause but doctors don't seem interested.

@HalloHello

You need a blood transfusion not an iron transfusion. I think they would give you iron if your ferritin was low but if your haemoglobin is only 71 you will almost definitely need a transfusion before surgery. It's not something your GP would organise though, should be the hospital as you would need to be admitted for it.

It sounds like it's under 70 for blood. I think iron will help, it has in the past. It seems so many on here have been as low as 40 or lower. It's terrible how woman are treated.

@belimoo

I paid for a private iron infusion last week as I knew I wouldn't get one on the NHS and I can't tolerate iron tablets. It wasn't cheap (£770) but I'm happy to send the details if you're interested.

I'm not sure I'd have another one as I've found the side effects pretty horrid but if you've had one before then you know what to expect!

I am booked in for the same on Friday (same cost so assume the same place), how was it? Did you have any side effects?

Whoops clearly only read the first part of your message before starting my reply 🤦‍♀️

@PrincessPaws I went to Cambridge for mine but I know there's a place in London which does it for the same price.

I was very nervous but it was absolutely fine at the time. No pain or side effects while I was having it done and didn't feel anything for about 72 hours afterwards. I smugly thought I'd got away without any side effects, which was stupid of me as I'd been warned I'd get flu-like symptoms.

For the last 5 days I've been feeling pretty awful with exhaustion, aching all over, swollen glands, headache etc. Basically like the flu. I've slept a lot and struggled to keep up with working from home. Today I've turned a bit of a corner and am not in pain but still feel completely wiped out. I'm just praying it's worth it!

Everyone's different though and I think mine has been quite a bad reaction compared to what I've read about other people's experiences. I have actually wondered whether I've maybe also picked up a bad cold and it's just been a coincidence.

Good luck with yours, happy to answer any other questions.

What's your ferritin levels? I get an iron infusion if they drop below 30 regardless of my HB levels.

[quote belimoo]@PrincessPaws I went to Cambridge for mine but I know there's a place in London which does it for the same price.

I was very nervous but it was absolutely fine at the time. No pain or side effects while I was having it done and didn't feel anything for about 72 hours afterwards. I smugly thought I'd got away without any side effects, which was stupid of me as I'd been warned I'd get flu-like symptoms.

For the last 5 days I've been feeling pretty awful with exhaustion, aching all over, swollen glands, headache etc. Basically like the flu. I've slept a lot and struggled to keep up with working from home. Today I've turned a bit of a corner and am not in pain but still feel completely wiped out. I'm just praying it's worth it!

Everyone's different though and I think mine has been quite a bad reaction compared to what I've read about other people's experiences. I have actually wondered whether I've maybe also picked up a bad cold and it's just been a coincidence.

Good luck with yours, happy to answer any other questions.[/quote]
Thanks so much for that, I'm a bit worried about side effects but am so fed up of feeling absolutely horrendous for the last couple of years that I'm willing to give it a go. I hope you feel much better soon

Its a nightmare getting infusions in my experience.
My iron was 49 and my b12 was 7 during my last pregnancy which had me gasping for air, fainting, weak, confused, dizzy and i had numb hands.
This is onto of a high risk pregnancy with an extremely high pre eclampsia risk, with a history or preterm birth and very low birth weight, and aneamia can cause most of the above.
I was given iron tablets and b12 injections but after ending up in a and e again for falling and being unable to breath, the drs there told me I should have been sent straight to hospital for a several infusions as I was at risk of permanent damage to me or my baby and still birth.
Thankfully baby was sort of OK at birth and is completely fine now

@belimoo

I paid for a private iron infusion last week as I knew I wouldn't get one on the NHS and I can't tolerate iron tablets. It wasn't cheap (£770) but I'm happy to send the details if you're interested.

I'm not sure I'd have another one as I've found the side effects pretty horrid but if you've had one before then you know what to expect!

Yes awesome, thank you.

[quote belimoo]@PrincessPaws I went to Cambridge for mine but I know there's a place in London which does it for the same price.

I was very nervous but it was absolutely fine at the time. No pain or side effects while I was having it done and didn't feel anything for about 72 hours afterwards. I smugly thought I'd got away without any side effects, which was stupid of me as I'd been warned I'd get flu-like symptoms.

For the last 5 days I've been feeling pretty awful with exhaustion, aching all over, swollen glands, headache etc. Basically like the flu. I've slept a lot and struggled to keep up with working from home. Today I've turned a bit of a corner and am not in pain but still feel completely wiped out. I'm just praying it's worth it!

Everyone's different though and I think mine has been quite a bad reaction compared to what I've read about other people's experiences. I have actually wondered whether I've maybe also picked up a bad cold and it's just been a coincidence.

Good luck with yours, happy to answer any other questions.[/quote]
Poor thing. Sounds horrendous. It's been at least 7 years since my last one and I don't recall any side effects other than maybe feeling a little achy.

Hope you've turned a corner now and start to feel the benefits.

@Mammyofasuperbaby

Its a nightmare getting infusions in my experience. My iron was 49 and my b12 was 7 during my last pregnancy which had me gasping for air, fainting, weak, confused, dizzy and i had numb hands. This is onto of a high risk pregnancy with an extremely high pre eclampsia risk, with a history or preterm birth and very low birth weight, and aneamia can cause most of the above. I was given iron tablets and b12 injections but after ending up in a and e again for falling and being unable to breath, the drs there told me I should have been sent straight to hospital for a several infusions as I was at risk of permanent damage to me or my baby and still birth. Thankfully baby was sort of OK at birth and is completely fine now

That's terrible. So sorry you went thought that, in pregnancy I've been lucky, they have taken it seriously and I've not been that ill. It's so terrible the things we have to put up with. Total postcode lottery of what care you will get.

Thanks @Newnamefor2021 I've sent you a pm with the details of where I had mine done.

@belimoo

Thanks *@Newnamefor2021* I've sent you a pm with the details of where I had mine done.

Thank you 😊

Yes the HRT helps alot.
Obviously the blood transfusions and the hysterectomy were the turning point for me.

Not facing massive blood loss every month had such a good affect on energy levels, weight loss and generally enjoying life more.

I retained my ovaries by choice but have very low progesterone which I take 21 days of the month now. This has helped massively with exhaustion, anxiety etc.

I am 40, this all began for me around 37.

@Blackopal

Yes the HRT helps alot. Obviously the blood transfusions and the hysterectomy were the turning point for me.

Not facing massive blood loss every month had such a good affect on energy levels, weight loss and generally enjoying life more.

I retained my ovaries by choice but have very low progesterone which I take 21 days of the month now. This has helped massively with exhaustion, anxiety etc.

I am 40, this all began for me around 37.

I'm 37, been going on a couple of years but I've always had gyn issues. I've put in weight since, it's been so hard as I had been losing weight but now I just eat terribly as I'm looking for any boost to get me to be able to do things. If that makes sense. I'm going to pick kids up form school so had some biscuits to try and help boost my energy. I know it's bad and makes things worse but I just can't help it.

GP rang! She was nice. Went on and on about how it's an emergency now and that I can't let it get lower! Like I was doing something to make it lower 😆

She is contacting both gyn and gastro to try and get an emergency infusion. So waiting game now I guess.

My folate is extremely low too, she didn't say want it was, but I struggled to hear her anyway, she did say both were dangerously low.

Will have oral iron too and folate. Not looking forward to taking that again. 😭

Totally understand re the food. I gained weight over the three years, some of simply down to constantly looking to boost energy.
I also started to crave really odd foods that I never eat, extreme salty foods.
However, the hrt has made the most difference for weight loss.

I am glad your GP sounds like she is taking this seriously. I would say once your symptoms are treated you really need the cause more thoroughly investigated.