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Original poster

Is it normal to feel this awful with anaemia

37 replies

HiyaCathyy · 08/12/2020 16:22

I’m just wondering if anyone can help who has been in diagnosed with similar low numbers. Tested in summer as I felt knackered all the time, achey, limbs felt like lead. Ferritin was 5, haemoglobin 110.
Tested a week ago and they are at 8 and 125. I still feel awful, tired when I awake, achey like I am about to get the flu all the time or something and a racing heart.
I can’t concentrate on anything. Do I just keep taking the prescribed iron and this will slowly go up? Gp didn’t say much except it will take a long time.

I’m off work today as I can’t function. Anyone else had numbers at this level and how long did it take to feel okay? Thank you.

OP posts:
Bumblesbumbles · 08/12/2020 17:09

Did they work out why you were anaemic? Think that’s important- I was anaemic with low ferritin and found to have coeliac disease. It’s a blood test but may be worth looking into?

JamesMoriarty · 08/12/2020 17:11

^I agree, coeliac was the cause for me.
Did they test anything else- b12, folate, vit d?

Todayissunny · 08/12/2020 17:13

Yes it's normal. can you have an infusion?

Original poster
HiyaCathyy · 08/12/2020 17:14

Hi there, I have been investigated or coeliac before and the blood test was negative. They didn’t mention vit d or the rest.

OP posts:
Muckish · 08/12/2020 17:14

Yes, it does feel that awful, and no, I'm not back to full health yet, as the underlying cause of my low iron is taking time to sort out.

My GP suggested doubling up the usual doses of iron while the cause is sorted, but I know some people find that makes them constipated.

Do you know why you're so anaemic?

Original poster
HiyaCathyy · 08/12/2020 17:14

I want to ask to be signed off work as I feel like I could fall asleep at any time and I’m always weepy! Wondering if I am being dramatic.

OP posts:
Bumblesbumbles · 08/12/2020 17:17

Sounds like they need to look at other causes too- maybe glandular fever etc? Assume all other bloods are normal?

RUOKHon · 08/12/2020 17:17

In my similar experience it is normal and it takes flipping ages to get back to feeling okay again. I have been on weapons grade iron tablets and vit D for most of this year. Felt dreadful for about three months and then started to turn a corner. If I don’t stay on top of it I can quickly slip backwards though. I have had ALL THE TESTS and they can’t find anything wrong. It’s so strange. And very annoying.

JamesMoriarty · 08/12/2020 17:20

I would definitely get vitamin d, b12 and folate levels checked then, it can make you feel awful in addition to the low iron.

Original poster
HiyaCathyy · 08/12/2020 17:20

Thanks for the replies, should I ask for b12 to be tested?

OP posts:
Original poster
HiyaCathyy · 08/12/2020 17:21

Sorry cross post, I will see if I can get that looked at, thanks

OP posts:
Tunnocks34 · 09/12/2020 22:11

I had pernicious anaemia which caused my iron anaemia - I would definitely ask for your b12 levels to be checked

ThornAmongstRoses · 22/12/2020 11:46

When I was diagnosed with anaemia my levels were at 92!

I was put on iron supplements and had blood tests 15 weeks later as that’s how long I was told it would take to correct my levels.

When I had my blood levels checked after 4 months of treatment they were still only 121.

It’s been almost 6 months since my initial diagnosis and I still have days where I feel I have no energy and get breathless on exertion.

Original poster
HiyaCathyy · 22/12/2020 18:47

Ugh you must have felt dreadful. I was very breathless at the 110 level. I’m feeling a lot better this week, I have more colour in my face and looking less like Morticia 😁

OP posts:
DownstairsMixUp · 22/12/2020 18:48

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.

tobee · 22/12/2020 18:59

Weirdly, for me, I only really seemed to feel bad after I was diagnosed and on the iron tablets. It took ages to get my haemoglobin "store" back up; not helped by mine being depleted repeatedly as mine was period relate.

Sympathies op; it was only when my numbers went to normal I realised i had got used to feeling crappy before I was diagnosed.

tobee · 22/12/2020 19:00

Ferritin store not haemoglobin.

generallygenial · 22/12/2020 19:01

You need b12 and folate testing!

I felt exactly the same

tobee · 22/12/2020 19:01

Just remembered my gp said expect it take 6 months Shock

Holothane · 22/12/2020 19:03

Last year I was aneamic didn’t realise it can take a few weeks to feel better once you’ve started on the iron tablets hugs.

DayBath · 22/12/2020 19:19

You probably already know about this but just in case the label doesn't mention it, don't take the iron tablets with a cup of tea or coffee as it blocks absorption. Milk is supposed to block it a bit as well, so it might be best to leave it an hour or two between the pills and a drink.

I got on best with Spatone drinks, helped me to avoid the worst of the constipation and they're more gentle on the stomach. Try and boost it through your diet at the same time, if you like red meat then get stuck in and it will speed things up. Take vitamin C at the same time to enhance absorption.

I had a transfusion in hospital a few days after rapid blood loss, so I presume it's the same effect and I felt very similar to PPs. Very faint and clinging on to things as I walked, out of breath at the slightest exertion. I can't imagine having those symptoms longer term, you have my deepest sympathies!

Caramel81 · 22/12/2020 19:25

When my ferritin was 9 I felt like I was dying or there was at least something very seriously wrong with me. It has taken a year to get my ferritin up to 70 and I still don’t feel great (although a lot better than I did). Apparently it’s not until levels are around 120 that you start to feel properly well again

Original poster
HiyaCathyy · 22/12/2020 21:01

Thanks for the replies Smile yes it’s not very nice is it, and it’s been going on so long I feel like it’s kind of changed my personality :( it’s only as I’m feeling more normal that I realise how miserable I’ve felt. Hopefully on the way up now though. I look a bit like I’ve been away and caught some sun so something must b working!

Thanks for the tips on absorption. :)

OP posts:
Original poster
HiyaCathyy · 22/12/2020 21:02

I know I need to ask my gp about those two! @generallygenial

OP posts:
JingleFails · 22/12/2020 21:08

I had low ferritin ( HB low but normal ish)and felt absolutely dreadful.
Palpitations, severe fatigue, I felt the life was draining out of me, MH issues, OCD and anxiety.
I couldnt go up stairs without needing to lie down.
I had horrifically heavy, flooding periods.
Once that was sorted and I was on Ferrous gluconate I felt better.
In fact I had been ill for so long and fobbed off by the GP, the change was miraculous.
Low ferritin is VERY underdiagnosed and ignored by GPs.