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.

I think after having my babies, I was told the cut off was 75. I had 78 with one and 76 with the other. They told me it was up to me but they suggested I did have it, so they were more than willing to offer it to me at those levels.

It sounds like you need surgery expediting (probably following a pre-op blood transfusion). I wouldn’t necessarily rely on the pre-ass clinic managing follow-up of the results and would probably call to the consultants surgeon’s secretary myself to ask for a phone conversation to discuss it. If you have no joy from the surgeons then your GP may be able to get through to them by other means. Iron replacement (either IV or oral) is only going to have a limited response unless they turn the taps off and stop the blood loss. In the meantime I’d also have a low threshold for presenting to ED.

@bluesky45

I think after having my babies, I was told the cut off was 75. I had 78 with one and 76 with the other. They told me it was up to me but they suggested I did have it, so they were more than willing to offer it to me at those levels.

Excellent. Thank you. I've had them frequently in pregnancies as I'm always anaemic lol but I know I can't fix this on just iron tablets, so hoping they will arrange. Thanks

It's not entirely about numbers; your day-to-day physical condition is important. Tell them you're fainting and can't stand up for basic tasks and demand it. It was miraculous for me but I had to make a big fuss.

I had four blood transfusions at HB 43.
Consultant said they give blood transfusions under 70 iirc.
I really hope you receive proper help.

@Greybeardy

It sounds like you need surgery expediting (probably following a pre-op blood transfusion). I wouldn’t necessarily rely on the pre-ass clinic managing follow-up of the results and would probably call to the consultants surgeon’s secretary myself to ask for a phone conversation to discuss it. If you have no joy from the surgeons then your GP may be able to get through to them by other means. Iron replacement (either IV or oral) is only going to have a limited response unless they turn the taps off and stop the blood loss. In the meantime I’d also have a low threshold for presenting to ED.

Thanks, I'll wait and see what happens, the nurse has been so lovely with me so far. She said if the GP doesn't call me by midday to keep calling them. So I'll see what they say. I will contact consultant secretary if I get no where, thanks for that, has considered doing that.

I think nurse was hinting I should be pushed up based on bloods but she obviously can't say that and right now, I just want to be able to cook a meal or not have to sit down if I stand up too fast etc.

What does low tolerance for ED mean? Sorry if I'm being stupid, my brains frazzled.

Thanks again.

@villainousbroodmare

It's not entirely about numbers; your day-to-day physical condition is important. Tell them you're fainting and can't stand up for basic tasks and demand it. It was miraculous for me but I had to make a big fuss.

Thanks. I've had them numerous times before during pregnancy but my GP has refused three times saying it wasn't bad enough. I did end up in A&E once when I was fainting a few times a day and my le el was low then but not dangerously I think. A&E doctor said if it was a bit lower they would have kept me in fir blood transfusion, but it wasn't quite that low.

It's a bit weird really as I've felt better when it's been lower before, if that makes sense. I think it's low enough now but I can only see one thing saying that and it's American so probably won't apply.

Thanks though. It's amazing stuff isn't it?

@Blackopal

I had four blood transfusions at HB 43. Consultant said they give blood transfusions under 70 iirc. I really hope you receive proper help.

Wow! That's really low, so sorry.

It's iron infusions I was hoping for, but seeing that it could be a lot lower then I'm maybe not quite low enough yet, will see what they say. Thanks though.

I really hope you're feeling better now? You must have felt so ill! So sorry.

ED is the emergency department (which is what MN still calls A&E!). An Hb of 70-ish causing syncopal symptoms needs fairly urgent attention. The nurse might be lovely, but she’s passing the buck back to someone who can’t actually fix the problem (the GP).

@Greybeardy

ED is the emergency department (which is what MN still calls A&E!). An Hb of 70-ish causing syncopal symptoms needs fairly urgent attention. The nurse might be lovely, but she’s passing the buck back to someone who can’t actually fix the problem (the GP).

Ah ok, did wonder if you meant Emergency department. I went last year after constant fainting episodes and they weren't the most helpful. Doctor there was lovely again although I had several comments from a nurse at coming at A&e with just a period.

I'm sure the nurse can do less than the GP though and she has sent it to my consultant. So will see what happens. Sounds like some people have a lot lower so it's maybe not as low as I thought it was.

Will see what GP says tomorrow and go from there. You e made some really great suggestions, so see what the GP says and then contact secretary Monday. Thanks so much.

Mines been
Low as 4 A&E sent me home even though really dizzy almost passing out. GP said infusion was option so went and waited hours sadly it’s up to whoever’s on duty and how busy department was if you just get sent home. They helpful gave me one single iron tablet and said go home!

@Akire

Mines been Low as 4 A&E sent me home even though really dizzy almost passing out. GP said infusion was option so went and waited hours sadly it’s up to whoever’s on duty and how busy department was if you just get sent home. They helpful gave me one single iron tablet and said go home!

That's awful. So sorry, are you ok now?

I have infusions as the tablets don't seem to work.
I can't remember the exact cut off however it sounds like you're very close to it. Personal opinion is you often have to be direct and ask for what you want, several reasons you want the infusion a) you don't tolerate the tablets well b) they're not working c) beneficial for your op/recovery to have good iron levels.
Do you know what your ferritin levels are op? Mine get below 2 sometimes I think.

@controve

I have infusions as the tablets don't seem to work. I can't remember the exact cut off however it sounds like you're very close to it. Personal opinion is you often have to be direct and ask for what you want, several reasons you want the infusion a) you don't tolerate the tablets well b) they're not working c) beneficial for your op/recovery to have good iron levels. Do you know what your ferritin levels are op? Mine get below 2 sometimes I think.

Thanks, no don't know, she said it was all quite low but I'm hard of hearing and wear aids so phones are problematic. I only know HB as I repeated it back to her. I'll try and get more info from GP tomorrow.

I was direct in the last but I'm in Wales and services are on their knees.

@Newnamefor2021 oh bless you. We've moved now but I have family still in Wales and one with a history of skin cancer has just waited 9 months to have a biopsy on what it quite clearly a cancerous growth. The services are just shocking there.
If you're phoning it might be worth asking if they checked your folate levels. I'v got folate deficiency anaemia on top of the iron, I think they can go hand in hand and it also causes nasty symptoms.

In my experience its transfusion if heam is under 7 in old money and 70 in new money.

For infusions is usually under 8 (of 80). No idea if ferritin is a deciding factor as I never have any! (It's usually at 2 but sometimes doesn't show up on blood tests)

A&E /admission have given me blood after a faint or fall and I have had infusions through referral to gastrology.

It's an area of no interest or importance to most drs. You can pay privately, it's about £800 for an infusion through the iron clinic (it's worth it to get your life back)

I've been anaemic several times over the years and done a huge amount of reading and research. I actually dont know the cut off for a transfusion, but it is dependent on symptoms too. One person can be functionally normally at a level of 70, whereas someone else might be fainting at 100. There is also pernicious anaemia where you cannot absorb iron in the regular way, and need Vit B12 injections every few months.

I don't know if its still done, but there used to be the option of an iron injection into the buttocks. If not done correctly, using a Z track method on the needle, it can leave a tiny, pin prick tattoo mark from the iron though! It does, however, provide a much quicker effect than oral iron, but not as quick as a blood transfusion.

You may already know all this, but iron tablets are only part of the solution. Diet can play a massive part too. Always take iron supplements and iron rich food with Vit C rich foods (citrus, peppers etc). Avoid tannin rich food (grapes, wine, tea/coffee) when having supplements and ideally, cut back as much as possible.

Are you taking a prescribed, high dose of iron? Some people just take over the counter iron supplements or multivitamins with iron. When deficient, you need a much higher dose of prescribed iron. The over counter ones are just a daily dose and will never correct a large deficiency.

Spirulina is a blue/green algae which is also high in iron. I wouldn't use it to replace prescribed iron tablets, but it might be useful to be used with them.

I’m fine now but that’s just how NHS is
Sometimes if you can take iron tablets they seem be desperate for you to do so before do anything. Sure it I was man I would got it!

Surely it's not up to you GP now!

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.

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!

[quote controve]@Newnamefor2021 oh bless you. We've moved now but I have family still in Wales and one with a history of skin cancer has just waited 9 months to have a biopsy on what it quite clearly a cancerous growth. The services are just shocking there.
If you're phoning it might be worth asking if they checked your folate levels. I'v got folate deficiency anaemia on top of the iron, I think they can go hand in hand and it also causes nasty symptoms. [/quote]
Yeah it's pretty much destroyed here. Protecting things like free prescriptions at the sake of key services.

My GP just doesn't pick up anymore and they switched over to ask my GP and that doesn't seem to work anymore either.

My mum has skin cancer and that's been hit and Miss.

@nodogz

In my experience its transfusion if heam is under 7 in old money and 70 in new money.

For infusions is usually under 8 (of 80). No idea if ferritin is a deciding factor as I never have any! (It's usually at 2 but sometimes doesn't show up on blood tests)

A&E /admission have given me blood after a faint or fall and I have had infusions through referral to gastrology.

It's an area of no interest or importance to most drs. You can pay privately, it's about £800 for an infusion through the iron clinic (it's worth it to get your life back)

Thank you. That's good to know. Our A&E are quite hostile, I guess as it's full of people the GP should have helped. I think especially with gyn issues.

Really good to know my options. My concern is I bleed so heavily at times. As in I can bleed through super plus tampons and over fill a pad within 30 minutes. Sometimes less. Plus I wonder if that will impact how quickly I'm seen for surgery. Maybe it won't make a difference but least now they can see my job going down they may take me more seriously.

@Hairyfriend

I've been anaemic several times over the years and done a huge amount of reading and research. I actually dont know the cut off for a transfusion, but it is dependent on symptoms too. One person can be functionally normally at a level of 70, whereas someone else might be fainting at 100. There is also pernicious anaemia where you cannot absorb iron in the regular way, and need Vit B12 injections every few months.

I don't know if its still done, but there used to be the option of an iron injection into the buttocks. If not done correctly, using a Z track method on the needle, it can leave a tiny, pin prick tattoo mark from the iron though! It does, however, provide a much quicker effect than oral iron, but not as quick as a blood transfusion.

You may already know all this, but iron tablets are only part of the solution. Diet can play a massive part too. Always take iron supplements and iron rich food with Vit C rich foods (citrus, peppers etc). Avoid tannin rich food (grapes, wine, tea/coffee) when having supplements and ideally, cut back as much as possible.

Are you taking a prescribed, high dose of iron? Some people just take over the counter iron supplements or multivitamins with iron. When deficient, you need a much higher dose of prescribed iron. The over counter ones are just a daily dose and will never correct a large deficiency.

Spirulina is a blue/green algae which is also high in iron. I wouldn't use it to replace prescribed iron tablets, but it might be useful to be used with them.

Hi, that's helpful, thank you.

Diet wise I've spent my life battling my levels so I'm pretty good. Lots of things like spinach daily, red meat, no tea or coffee, lots of fresh organiser juice especially when taking tablets (which I think had a big effect on my teeth when I was younger). I make iron rich smoothies and juices. It's harder now as I'm feeling so poorly I don't have the energy.

I had lots tests like nuclear medicine test to look for other sources of bleeding as a child. I don't think I absorb it well but of course GPs never listen. They just say take it as I can even though I end up vomiting and like a horrific sickness bug for days.

@Akire

I’m fine now but that’s just how NHS is Sometimes if you can take iron tablets they seem be desperate for you to do so before do anything. Sure it I was man I would got it!

Yes definitely.