to ask how on earth you manage day to day with something like aenemia?

[Cotherstone]

I’m just so shattered, it’s ridiculous. It’s almost embarrassing. It’s not like I want to sleep all the time, I just want to sit down every time I try and do something. I’ve been feeling more and more run down for months but I put it down to my age (40s) for ages before finally going to the GP, so now my ferritin is 4 and my Hemoglobin is in the 90s.

I’ve made the mistake over the past few months of not telling anyone how I felt because if it was just getting older, what could anyone do? So now it looks to my family like I might only feel this bad because the doctor has told me I have something. DH kind of gets it but says things like, maybe you should try and get more exercise, eat more fruit, have the odd early night - none of it bad advice I suppose but he kind of sees it that I’ll be fit as a fiddle within a few weeks, because I never really told him how long I’ve been feeling bad for.

The day to day reality is two kids at school, a f/t job (though mostly wfh) and and f/t working DH who does shift work. There’s nothing much to give, really. Work know and I’m currently in the middle of a few weeks of reduced hours which is helping while I get used to iron tablets but it’s not a long term solution.

I’m so tired I know I’m snapping at the kids and I keep bursting into tears feeling overwhelmed by it all.

Sorry, self-centred rant over. Does any have any tips or words of support? I know it will slowly get better but I just need something to focus on to get through the next month or so while it’s still really rough.

Empathy OP. It sucks. It’s happened to me a few times and presuming you’re on ferrous sulphate now, it will only be a few weeks of the absolute soul crushing tiredness.

I am in exactly the same position as you and all I can do is tell your DH he needs to step up with the day to day drudgery (cleaning, cooking, packed lunches, ironing etc…) and you need to concentrate on getting as much sleep as you can.

Once you start to feel better then make sure you keep the iron up, eat well, exercise, I find floradix great as a day to day supplement when I’m over the anaemia.

I take supplemental iron, eat a lot of iron rich foods, and try and force myself to exercise anyway and drink a lot of water.

I am exhausted. All the time.

Can you ask for an iron infusion to give you a boost? My ferritin was 6 and I take lost of iron, then start forgetting once I feel okay then it plummets and I take them again. I need to get to a point I take them around my period but not all the time because I hate the side effects.

Get some ferrous Fumarate, you’ll soon feel the benefit.

I’m on ferrous fumurate fortunately, so good to know it will kick in soon. And thanks for the empathy too, I feel like I need that at the moment 🙂

Unfortunately DH can’t step up too much more due to his work and hours - it’s great when he is here but there are many days when it’s just me and the children and there’s still clubs and homework and all that. I think I need to gently get my 10yo to help out a teeny bit more.

I’m struggling to eat much with the tablets which doesn’t help but I’m sure that will pass as I get used to them and I can get a lot more steak and dhal in me!

Oh, it sucks to be a woman sometimes 😉

I would chug down Floradix as well for a good few weeks as it has all the stuff in it to help your body absorb iron. Tastes not great but it's kept in the fridge. Made a massive difference fairly quickly for me.

It's going to take quite some time to recover, can you actually take sick leave from work? Did they also check your vitamin D levels?

I have chronic anaemia. I second asking for an infusion or transfusion, the worse they can say is no.

Vitamin C is a great booster with your iron tablets and food.

Avoid/limit iron reducing foods, reduce caffeine products including chocolate.

Rest when you can and same with exercise. Some days for me it’s just stretching, other days a proper gym workout.

It does get better but it takes time

I’d pay for an iron transfusion if NHS won’t, the oral iron takes so long. My teenage daughter has very low ferritin, she had to have a blood transfusion after her first period, the bleeding wouldn’t stop. She’s not been the same since, 2yrs next month. She starts the pill next week to try and help. She really struggled and it affects our life a lot

Are you on tablets or liquid op? The tablets actually made me feel worse and the doctor prescribed some ferrous fumarate liquid (140mg/5ml) - It's made a huge difference to my energy levels - i take 10ml in orange juice on an empty stomach - it tastes awful (like liquid chaulk imo) but the difference it's made has been amazing. It does get better x

I had a ferritin level of 3 , I have 3 dcs and I was mid 30’s when I had it. I took slow release iron tablets (some name beginning with f.) and although my levels went up I honestly didn’t notice a huge difference in energy tbh . Exercise made a huge difference, I got back into running again. I force myself to go to bed early . With 3 kids though and a lot of work on and we have absolutely no family support we are tired , it’s normal. Definitely try and exercise more once your levels increase. Tbh it didn’t really matter about explaining to plp how tired I was , my dh has always been amazing but no one else cared so I just had to sort stuff out for myself.

I paid over £700 for a private iron infusion.
I also take 2 iron pills per week just to keep me topped up plus iron rich food.
A glass of fresh orange juice daily.

I cut out almost all caffeine.

I feel SO much better. It's been 6 months since my infusion and the difference is crazy. Worth every penny (can't really afford it but I couldn't carry on like I was).

I took ferrous f with vit c and it definitely worked at increasing my levels but I didn’t notice a massive difference in how I felt tbh as I’m always tired with how much we have going on. Sleep and exercise made a huge difference

Omg you've said exactly what I've been feeling - for months I've been feeling shattered and barely able to keep going, then I got covid and put a lot of it down to that. Went to the docs and got bloods done and I'm borderline under active thyroid. They want to retest in 3 months but I'm not sure I can wait 3 months - I've almost every symptom but when I was chatting on the phone to them about my results I didn't know what the symptoms were because it had never occurred to me- so I couldn't tell them that. Today I am beyond running on empty. I might call them again on Monday and explain. But I feel rotten and my partner doesn't get it, he keeps saying I just need a good nights sleep 🙄 I could sleep the clock round, and still feel like shit. Sorry you're feeling crap too OP

I can't afford an iron transfusion. So many women suffer with this, it seems barbaric that it's not available on the NHS.

I had anaemia for 35 years (since I was 12). I was on ferrous fumate but blood tests kept coming back saying I was anaemic. I was never offered anything other than the same prescription.

I was scheduled for a hysterectomy and they did a pre-op blood test and told me I was so anaemic, I’d need a transfusion before they’d operate. (Iron levels were fine for me to cope with for 30+ years though…) I had to have two transfusions, then another 3 during surgery.

There is a world of difference between a transfusion and tablets. I feel like a new person (obviously helped by the fact I’m no longer losing blood for 365 days a year!)

I felt rubbish all the time and turned out I had kidney disease. Not saying this will be the case for hardly anyone but worth keeping in mind.
I also advise that if you are feeling rough and thinking of asking for blood tests, take out critical illness insurance first! Once you book the test, if anything comes up, you won’t get insurance if it’s serious and that money can make a huge difference during difficult times.

Have a look at the spoon theory for managing chronic illness op but hopefully once the iron kicks in, you will feel better. Anaemia makes life really tough so you have my sympathy 💐

I’m sorry @onlymyselftoanswerto1, it’s frustrating when they just tell you to have a good nights sleep, isn’t it?

I’ll get the Floradix too. I’m managing 3 tablets a day at the moment and are trying really hard to time them around food and caffeine so they work well. Exercise feels like a mountain too far at the moment but I will try as soon as I can.

And thanks loads for replying and the sympathy, it’s reassuring really to know that I’m not being a wimp!

I have critical illness and private medical, thank god. I do think it probably is periods causing this so have been prescribed tranxemic acid to help, fingers crossed. My GP did at least happily order full bloods so it seems everything else is ok, but if I don’t improve in a few months I will push for more tests.

I get you OP, when I was diagnosed with Iron Deficiency Anaemia I had a ferritin of 0 and my haemoglobin was 76. I had felt awful for years, but been fobbed off by my GP time and again (they wouldn't even do blood tests, I only found out as I was having private blood tests for something else!)

Like you I just assumed that it was age, I had also been told that I was tired because I'm overweight so just needed to do more exercise (really hard when tying your shoes leaves you breathless!!) My hair was falling out because I was getting older, my pica (ice crunching) was all in my head, my joints hurt because I was fat, my palpitations were because I was fat and/or stressed, my brain fog was just hormones etc etc

I think it was also because it creeps up on you and you get so used to feeling like shit that you keep resetting what you think is 'normal' and just soldiering on because you don't want to make a fuss. It wasn't until I was telling one of my friends (a nurse) and told her my levels and she said 'holy fuck, how do you even get out of bed in the morning?' that I eventually broke down and told her how horrendous I had been feeling. I also told my husband

I tried 600mg of ferrous sulphate daily for 9 months but because my horrendous periods (spot the username) are the cause I was just topping up my levels just for the new iron to flood out of me during the next period, so after all that time my ferritin was 3. I ended up getting a private iron infusion in Harley street (they were also surprised how I managed to function) which brought my levels back up to the low end of normal but my pica is back so I know if I tested now I'll be anaemic again

It's really lonely OP, because unless you've been there you just can't understand. I've found it helpful to explain it in terms of essentially having half the amount of oxygen in my body than I need, which affects everything you do - although that is very simplistic people kind of get it.

Have you had your bloods tested for b12 deficiency?

Really sorry you’re feeling so crap. I had this last year, ferritin was 4, I just couldn’t keep my eyes open. I felt much better within a few weeks on 3 ferrous sulphate, now on 2 and feeling pretty good. I had follow up bloods, ferritin got to 42 within a month which isn’t amazing but much better than it was.

Tranex has changed my life too, I hope it works for you. I’ve gone from not being able to leave the house on day 2 due to constant flooding to not having to consider it much.

If you had full bloods I’m sure they checked your b12 but the “acceptable” levels in the U.K. are very low compared to other countries so I’d ask for or access your results. B12 deficiency is chronically under diagnosed and can make you feel the same, it’s possible to have crap ferritin and crap b12.

Might be irrelevant but I wanted to mention it just in case.

This resonates so much - that I’ve been ploughing on ploughing on, not mentioning to anyone quite how bad I feel, and now it seems difficult for them to understand that as you say, the simplest things leave me exhausted and breathless. But it’s also like now I know I’m ill, it’s really hit me like a tonne of bricks. My concentration is utterly fucked too.

I believe my B12 and that was fine but I’ll double check my results again.

take SPATONE it “transfers” better (no idea what this actually means except it gets to sorting you out quicker) it is also gentle on the stomach so really good.

and I’d just go in and cry and beg for an infusion. Within a week you’ll be feeling much better. They tend not to do it unless you beg for some reason. Money? Not sure. But really really really worth it.

also get regular (at least 6 monthly) bloods from now on.

I am a blood donor and am very slow to replace my red blood cells after a donation so often get turned away as anaemic. I recognise the exhaustion and, as I live near hills, suffer from breathlessness when I go up hill for weeks after a donation.

I struggle to recover with non-haem iron (supplements or green vegetables, etc) but find that I can get my levels up quicker with plenty of haem iron in my diet - red meat and, specially, liver. I hate liver but pate seems to work.

I think you said you have private medical insurance? I would not suffer a moment longer TBH. See a doctor privately and request, sorry DEMAND an iron infusion. They will see it is necessary from you iron panel blood tests.

But maybe your GP is private, not sure. If he is NHS, don't hesitate and go privately. I cannot believe you are prepared to tough it out for another FEW MONTHS! No way you can have any quality of life with those blood results. Do not be a martyr please.

I am speaking from experience here. Fobbed off for a few weeks with iron tablets. Made me sick and no improvement after two months anyway. Went private and got an infusion. I was like a flower opening up in the morning! I have never felt better, and maintain iron levels with Iron Fizz soluble tabs + vit C every day. No ill effects and bloods holding up well, touch wood. I get tested every six months and if iron levels dip below a certain parameter I will be offered another infusion. My life has been transformed. I paid for it myself and it is the best money I have ever spent in my life so far. Fiddling around with tablets is not enough when you reach your low iron levels.

Do not wait any longer, and I wish you well.