Anaemia- totally exhausted, breathless, signed off work, now having chest pains

[Chocolota]

My energy levels have been low for months but I put it down to being busy at home and work ...

In hindsight though, I was also getting bouts of nausea, some dizzy spells, and especially tired just before my periods. (I have endometriosis and adenomyosis)

Then felt awful mid Oct with the heavy cold that's been going round, during half term my daughters and husband both tested positive with covid and I started to get lots of the same symptoms as them. Fatigue, needing to nap during the day, severe headache above my eyes, body aches etc... but no positive pcr test.

By last Friday I was experiencing extreme breathlessness and exhaustion, even from climbing the stairs or trying to hold a phone conversation.

Phoned GP last Monday who felt it sounded like covid and sent me to urgent care centre red hub, oxygen levels, bp and blood sugars fine. Got sent on to A&E for chest x-ray, ECG and blood tests.

10 hrs later, I was told all fine except iron levels low, so came home at midnight with Ferrous Sulphate 200mg to take 3 times weekly, advised to book another blood test for 6 weeks' time, and also Tranexamic Acid to take during first 4 days of my period.

Phoned the GP to discuss the blood test results and they hadn't been sent through with my discharge results, so phoned the hospital to request a copy but they said they could only send to GP.

Had phone appointment with GP yesterday and he diagnosed Iron Deficiency Anaemia, said my ferritin level is 3 and my haemoglobin is 104.

He was going to prescribe Ferrous Fumerate but when I said A&E had given me Sulphate he said stick with that. Asked if anything else I can do to help symptoms or aid iron absorption etc, but he said no, everything else looks fine on bloods, just ferritin and hb so just take the tablets and rest, should start to see improvement in 2-3 weeks.

He's signed me off work for this week and next, as at the moment the most exertion can manage at a time is a 5 minute walk to school or hang up the washing etc, before I'm completely wiped out and have to sleep it off for an hour or two. If anyone phones me I always sound out of breath like I've seen rushing, even if I'm laid on the sofa.
In the last few days I've started to get more noticeable heart palpitations especially in the evenings, and tonight some quite sharp chest pains. Think another call to the GP may be needed tomorrow... any thoughts anyone please?

Any of this ring true for you? Any advice gratefully received... should I be asking for a copy of the blood test results? Am drinking a glass of orange juice or soluble multivitamin drink after the iron tablets, and trying to make all my meals iron rich with vit c too, but should I also be taking B12? vit D? Magnesium? Zinc? Anything else?

Thank you if you've read the whole of this post, it's taken me about an hour to write, that's how slowly my brain is working at the moment xx

No advice, but I'm in the same boat so just wanted to wish you well. 🤞 we both get sorted soon

Ah, sorry to hear you're experiencing the same, it's horrible isn't it? I never realised the effects of anaemia could be so extreme. My iron levels dropped a bit when I was expecting dd1, but nothing like this. Hope your levels start to pick up soon.

Bloody hell. I’d go back to your GP and explain how rough you feel and push like mad to be admitted for IV iron therapy. A ferritin level of 3 is dreadfully low and is dangerous. I’d also call haematology at your local hospital and say exactly the same to them. Don’t leave this.

You also need to get to the bottom of what’s causing it too. Can’t believe all they’ve done with such low levels is oral therapy. That’s simply not right.

Yeah, I did think they would be looking at more than tablets to be honest when i heard the figures the doc said on the phone. But its so hard to think straight and get a sentence out let alone argue my case with a busy gp over the phone.

Thanks, I'm definitively calling gp back in the morning, peehaps they'll change their tune when they hear about these chsst pains.

It'll be a result of very heavy periods due to endometriosis and adenomyosis- both mg ddswere crash emergency c section and I had 1 ovary removed due to a cyst a few yrs back. A&E doc started me back on tranexamic acid to reduce the bleeding so that should help....

I had ferritin levels of 10 and couldn't face the tablet side effects and slow recovery. I went to the Iron Clinic in London and paid for an infusion. Check them out - I was so glad I had it and felt so much better. I also made sure to take folate and B12 - they are co factors that work together to produce new red blood cells. There are helpful groups on FB. Now I take liver pills and the odd iron bisglycinate to keep on top of it. Be sure to take any tablets first thing in the morning with vitamin C - it helps absorption. Also, newer research suggests taking every other day with tablets gives better outcomes than daily use. Google will bring up the study. Hope you feel better soon x

@Ayupmeduck1

I had ferritin levels of 10 and couldn't face the tablet side effects and slow recovery. I went to the Iron Clinic in London and paid for an infusion. Check them out - I was so glad I had it and felt so much better. I also made sure to take folate and B12 - they are co factors that work together to produce new red blood cells. There are helpful groups on FB. Now I take liver pills and the odd iron bisglycinate to keep on top of it. Be sure to take any tablets first thing in the morning with vitamin C - it helps absorption. Also, newer research suggests taking every other day with tablets gives better outcomes than daily use. Google will bring up the study. Hope you feel better soon x

Thanks for the advice. Yes I think I'll start taking a good b12 and folate too. Yes I'm having a glass of oj too.

I'm not near London unfortunately but have juat looked up the guidance for my local nhs trust re iron supplements they offer. Seems ferrous sulphate is the 1st option as cheapest but Fumerate may be an option as it can be better absorbed.

The guidance details possible risks and complications from infusions especially for asthmatic patients so I wonder if they may rule this out for me on these grounds.

I know how debilitating anaemia is. It totally wipes you out. The first time I was diagnosed it took me by surprise. The iron tablets help a lot. You need to eat iron rich foods and it settles down. I now recognise the symptoms and begin the iron tablets pronto. People do not realise just how exhausting it is. I feel for you.

are you having chest pains now.
if so, i think you should ring 111.
good luck.

@Justaflippertyjibbet

I know how debilitating anaemia is. It totally wipes you out. The first time I was diagnosed it took me by surprise. The iron tablets help a lot. You need to eat iron rich foods and it settles down. I now recognise the symptoms and begin the iron tablets pronto. People do not realise just how exhausting it is. I feel for you.

Thank you. Yes I've been having steak, mince, spinach, lentils, beetroot, kale, chickpeas, watercress, you name it ...

Wiped out is exactly it.

@alexdgr8

are you having chest pains now. if so, i think you should ring 111. good luck.

Morning. The chest pains did eaae off a little last night and haven't had any this morning, but will get on to the GP at 8am, as it's a change from original symptoms.

@Squeezedtillipop

You also need to get to the bottom of what’s causing it too. Can’t believe all they’ve done with such low levels is oral therapy. That’s simply not right.

It's what they do - my ferritin was 0 this time last year. I've been stuck on ferrous sulphate for a year but as fast as I get it in, my next period wipes me out!

I just keep getting told to take the tablets (so am now investigating getting a private infusion)

I've seen the GP this morning and he checked my breathing, oxygen levels, and pulse. Also mentioned I've developed involuntary muscle spasms, jerking arm etc, which happened while I was in the appointment too, so he's added that to the list of symptoms! Blood pressure was on the high side.

He wants me to have another blood test and ECG in the next 5 days. I asked if no improvement or if levels are lower then are we looking at an alternative treatment and he said no, the criteria for iron transfusions are pretty strict - only if haemoglobin is below 90. I pointed out that 104 is not much above that really and he didn't disagree.

Luckily the surgery have had a cancellation so have booked blood test for later this morning and ECG for after lunchtime, so we shall see...

That’s not right - the criteria for infusion isn’t based on haemoglobin, it’s on ferritin. He needs to refer you to haematology NOW.

@Squeezedtillipop

That’s not right - the criteria for infusion isn’t based on haemoglobin, it’s on ferritin. He needs to refer you to haematology NOW.

OK, when I'm back at the surgery in half an hour for the blood test I think I'll ask the receptionist which of the GPs there specialises in this area. I've got the print-out from last week's blood test too so am looking through that in more detail now.

Not to sound negative but from my experience, GP's lack knowledge in this area massively. I've been anaemic for most of my life on and off. I hope you have success with your GP of course but I just got frustrated with mine, hence paying privately to resolve the issue and feel I could function again! Dr Toby Richards who runs the Iron Clinic was fantastic explaining my blood test results - my levels began to effect my bone marrow. They might give you some free advice on the phone? This group is really helpful too:

www.facebook.com/groups/anemic/?ref=share

I gave birth three weeks ago and lost three litres of blood and was severely anaemic and symptomatic like you describe. HG levels were 83, Literally couldn’t get out of bed for days and when I did heart racing/out of breath just standing up etc. I had two transfusions in hospital and there was the option of an iron infusion also - it sounds like you could benefit from this. The iron tablets given by the hospital are shit and will take months to take effect - I’m taking a bioavailable iron+ supplement that has b12 in it on an empty stomach with orange juice (vitamin c can help you absorb iron). Good luck!

@Ayupmeduck1

Not to sound negative but from my experience, GP's lack knowledge in this area massively. I've been anaemic for most of my life on and off. I hope you have success with your GP of course but I just got frustrated with mine, hence paying privately to resolve the issue and feel I could function again! Dr Toby Richards who runs the Iron Clinic was fantastic explaining my blood test results - my levels began to effect my bone marrow. They might give you some free advice on the phone? This group is really helpful too:

www.facebook.com/groups/anemic/?ref=share

Thank you. I have joined that fb group and will read info from the clinic. Will see what blood test results say tomorrow and go from there but may contact the clinic for advice if no joy from gp.

@FrangipanFlower

I gave birth three weeks ago and lost three litres of blood and was severely anaemic and symptomatic like you describe. HG levels were 83, Literally couldn’t get out of bed for days and when I did heart racing/out of breath just standing up etc. I had two transfusions in hospital and there was the option of an iron infusion also - it sounds like you could benefit from this. The iron tablets given by the hospital are shit and will take months to take effect - I’m taking a bioavailable iron+ supplement that has b12 in it on an empty stomach with orange juice (vitamin c can help you absorb iron). Good luck!

Bless you, I can't imagine feeling like this with a newborn. Congratulations though, and glad you got the right treatment.

Have you checked b12? Try using a b12 spray that helps. Being deficient in b12 can cause anemia and other issues.

@Mamabear12

Have you checked b12? Try using a b12 spray that helps. Being deficient in b12 can cause anemia and other issues.

I think I'm going to get a b12 to start taking today. Don't know my levels, it's not on the blood test.

That's not enough iron. Did you mean to say weekly?

www.nhs.uk/medicines/ferrous-sulfate/

@CottonSock

That's not enough iron. Did you mean to say weekly?

Oh my goodness, no, sorry I meant 200mg x 3 tablets daily! That's how bad my brain fog is, I'm sure I re-read that a couple of times before posting! Thanks for clarifying.