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.

@hillbillyannie thats interesting, I had no idea that a transfusion was something you could get privately - I assumed it was either needed or not, it would just be the speed?

I had a Mirena coil fitted as it was heavy periods causing mine. I didn’t think they were that heavy, but they were obviously heavy enough to have my ferritin down to 7

Hi, What I was referring to was an iron INFUSION, mine was called Ferrinject and took under an hour fully supervised in a private hospital, having been ordered by the consultant via the doctor, all private. It is an infusion of iron, not a blood transfusion.

I hope you can push for that privately! It is based on haemoglobin levels, well at least mine was. Just to add that my anaemia was related to GI (gastro) internal bleed which was serious enough for sure. The infusion was follow up treatment.

However, the doctor said that they are using it more and more re women with menstrual problems instead of the long haul of tablet supplementation. I found this article while I was waiting for my treatment. It might help, but it refers to US based treatment options, but they are usually first to get ahead, and the NCBI is a respected organisation. Women should never have to suffer like you are if there is a solution. Scroll down the article to "heavy uterine bleeding". Hope you feel better soon.

But it’s also like now I know I’m ill, it’s really hit me like a tonne of bricks.

That's the thing though, it really hasn't - you feel exactly the same as you have for a while, it's just that you now know that it isn't all just in your head, you are actually allowing yourself to realise how bad it is!

You can get this done without going through consultants if you are willing to pay. I went through the Iron Clinic in Harley Street (there must be other providers) and although I felt dreadful straight after (iron flu) it really helped

Have you been scanned or seen by gynaecologist?

I had this, horrific anemia for years every period. I self medicated on iron for ages as no one would refer me. Then it got even worse but found an awesome doctor who got me a scan. I have adenomyosis. I loose a lot of blood. I’m now on the mini pill and don’t get periods and feel like I’ve got my life back.

Also take vitamin c and d with the iron tablets and avoid caffeine

I had this and ordinary iron tablets didn’t work for me. I take Heme iron - you can buy it on Amazon- and the difference was jaw dropping. I had no idea what it was like to have normal levels of energy.
There’s a Facebook group called The Iron Protocol that has a lot of info and support on it, which is where I got the info about heme iron tablets.

Ferrous formate didn't work for me but Floradix worked wonders. I took a double dose for a couple of weeks.
I did feel better but nothing got my energy back properly until I went on HRT. It was a game changer tbh! I'm 41 and looking back had been gradually feeling worse for a couple of years. Progesterone starts to decline in our mid 30s. Could you be peri menopausal? Lots of people that are peri have low ferritin/iron. Just something for you to consider.

Thanks for the extra thoughts. I’m going to chat to someone at my private health tomorrow and see if there’s anything that can be done through them. Otherwise maybe we will just pay for the iron transfusions.

So far no investigations have been mentioned because it’s so new and I do agree that really, we just need to try the tablets and the tranexemic acid for a bit. I’m not prepared to go back on hormonal contraception again or take HRT yet (family history of breast cancer) so a private transfusion might be the only way.

I have had anaemia for many years. It is a horrible condition. I fall to sleep so easily (when travelling in a car, when sitting in a meeting and so on). It is a crushing tiredness. I also get incredibly breathless, although this could also be due to COPD (under investigation for this).

I am going to try one or two of the suggestions given here.

Thanks

Have you had your b12 levels tested. Do not take b12 tablets until you’ve been tested as they can give a false healthy result when injections are needed.

also d3 and thyroid

The NHS normal range for iron and b12 is abysmally low, so easy to be fobbed off and remain I’ll

It's exhausting isn't it? I was lucky in that I've actually collapsed from low b12 so my matching low iron result was taken a bit more seriously but it absolutely does flatten you. I've found it generally takes about 3 weeks of tablets to start feeling much better.

Top tips:
Take your tablets in the morning with orange juice as the vit c helps absorption.
No caffeine for an our or so either side as it blocks it.
Try both types of tablet - some people respond better to ferrous fumarate and some to ferrous sulphate.
They will clog you up so probably best to get some laxatives ready.

I think you should also talk to your kids and say you're really tired from being poorly and please can they go easy on you for a few weeks. They're old enough to at least try.

We also have a freezer drawer with healthy meals for when I'm totally wiped out. It just makes things much easier, although beans on toast is also a great option.

Take it easy, you will get through this! And maybe double check it's not menopause or thyroid related too?

I had heavy periods and very low iron attributed to that but when they stopped and it still continued, I was eventually diagnosed as a silent coeliac which affects the absorption of iron and other nutrients.

I haven’t read all the replies so apologies if this has already been mentioned but after years of heavy periods & anaemia I finally had an endometrial ablation a few months ago. It’s been amazing & my periods have completely stopped, I feel so much better. It doesn’t have any effect on hormones so is a great option if you need to manage your periods without taking pills. It can only be done if you don’t want to get pregnant again. I just thought I’d mention it because lots of people haven’t heard of it & I think it’s important to treat the root cause of anaemia if possible rather than taking supplements. I hope you feel better soon xx

I've found my people! Recent accidental discovery of ferritin at 8 and haemoglobin at 102. Aged very late 40's. Now waiting for results of a battery of tests. Periods regular ish but super heavy. The week leading up to them has me emotional, suicidal and a completely different person.

It's so debilitating but DH currently has some much more serious medical issues which trump mine so I'm breadwinner, housekeeper and carer all whilst I quietly fall apart inside. Hopefully I'll get a miracle pill when my results come back.

Hope it all gets better for you OP

Actually my mum had this in her 40s and it’s definitely on my radar if the periods don’t lighten up!

I’m sorry it’s so rubbish for you too. I looked up the quotes for a private transfusion as other people mention and it’s about £700-800 - is that something you could stretch too?