To not treat anaemia/ iron deficiency

[Catkitkat]

My ferritin is 3 and hb is 9, so it’s on the low side. GP referred me to haematologist but insurance says no, iron levels are low due to my lifestyle choices so I should exercise, eat leafy greens and take supplements to raise my energy levels. NHS says I should get birth control which reduces periods, otherwise just get on with it.

The thing is that I’m already taking supplements (when I remember) and I eat a lot of iron rich vegetables on a daily basis, I really love vegetable so this is not an issue for me. I’m also not a vegetarian so I will have red meat every now and then.

So what more can I do? I can’t really change much on my own to improve my energy levels elsewhere or wellbeing. I feel wiped out, I can’t even explain how tired I am all the time. It’s not fair on my children to have a mother who is this low on energy.

And also, what happens if I leave this untreated? Is there a long term risk associated with these levels, am I risking something by not seeking a second opinion?

@seekinglondonlife

I was the same OP, I was taking oral iron which didn't seem to be doing the trick and one weekend I fainted a few times, felt very ill and phoned the GP who sent me to rapid response clinic in A & E for an infusion. I might have exaggerated my symptoms slightly. I felt AMAZING after the infusion.

Sad that it has to go that far before they will consider infusions! It seems to be so helpful. My friend who is in a better financial position to me goes for infusions almost annually, there is a clinic in London run by a haematologist where you can self refer, and they evaluate and treat you promptly. In excess of £1000 so out of the question for me

Go back to NHS gp and ask to be referred again. If they refuse ask to speak to the practice manager and get the NICE guidelines for referal protocol.

Leafy greens are not good enough.
Proper supplements would make you feel much better. I find the liquid version easier on my stomach.

Things like Spa Tone and health food shop Iron isn't a high enough dose.

For what it's worth, I had an iron transfusion recently, and I feel so much better for it. It worked quickly and although expensive I do think it is worth it to be able to live more fully again.

Would recommend.

On further looking at guides u will need to have tried oral ferritin 200mg for 3/4 weeks before a referal can be made. Can you get this prescription from the GP? And then a follow up blood serum level.

. In excess of £1000

It is £750.

Spatone liquid iron is great. You can get them with vit c added so you can just drink the sachet without mixing with juice. They really helped me when I was anaemic.

Isn't normocytic anemia more of a symptom of something pretty important going on, rather than a condition in itself?

They ought to be looking for the cause if its normocytic anaemia.

You definitely need to take more than just floradix, you'd have to take at least 5 times the normal dosage of it for it to be any help. The tablets don't do well with my stomach either, I'm currently taking Maltofer chewable tablets which are 100mg, which don't seem to have much impact on my stomach (although still waiting to see if they have much impact on my haemoglobin levels too), dunno if you can get them in the UK (they taste horrible though, supposed to be chocolate flavour... they are not)
Don't take within two hours of tea or dairy, and set a daily alarm and when it goes off immediately go and take them, before you have a chance to forget. With vitamin C. I take mine in the evening, when I've long since stopped drinking tea so I don't have to plan around it.

My Hb was 7 at one point, I was exhausted. The doctor put me on Ferrous fummerate 210mg 3 times a day for ages, then reduced to 2, now for the last 5 years it's one a day. The doctor had told me if it is that low for a long time not only would I be breathless and exhausted it can affect your heart. Mine is now within normal range although low end (12) My nails have grown long and strong too.

My iron is always low. Surely the doctor has you at least on ferrous fumerate capsules for short term. I have to double up on dosage daily for a month to get my iron up so I'm not cold and exhausted. Then capsule daily when I'm feeling half human. I usually take in.middle of the day with lunch. I take fybofel morning and evening plus omeprazole in morning to help stomach.

That's 305mg capsules of ferrous fumerate

I order ferrous fumerate capsules online from easy meds pharmacy. Exact same ones dr prescribes but easier for me this way as they deliver to the house

Ferrous fumarate is easier to tolerate on the gut than ferrous sulphate.
So is ferrous gluconate

Please go back to your NHS GP and ask them to prescribe one of these. They know that non compliance with iron supplements is often due to the gut side effects!!!
And do pay attention to taking them not with milk/dairy/caffeine. Like others on here I take mine in the evening, with vitamin C, as I only drink tea til midday. And I take them with/after dinner to reduce impact on gut.

Doubling up on Floradix just won’t cut it - others have given specific figures but there is like 10 x times more iron in a single ferrous fumarate tab than in Floradix dose !

Go back to your gp and ask for a private referral. The letter will need symptom start date, what the symptoms are and the clinical reason for the referral. For an infusion, you'll also need to include the results of your blood tests. Go back to the insurer and ask again for it to be pre-authorised. The referral should be sent to the clinical team for review who may ask for more information. If the "advice" and lifestyle choice comments were made by the advisor who took the call, please raise a complaint as they're not supposed to give medical advice and will be retrained.

What method of contraception are you using? If nothing, you really don't want to conceive with such low levels - the amount of blood loss in birth or termination/miscarriage could be life threatening.

Just a few months of not bleeding could help give you a chance to improve your levels if there isn't a medical contradiction to back to backing pills if you don't fancy a Mirena.

I have just checked the strength of my iron tablets that I buy from the pharmacy counter in my local chemists (sometimes boots, Lloyds or a supermarket depending where I am when I realise I am running out) they are Ferrous Sulfate 200mg tablets. I try and take 2 a day. The iron tablets on the shelf are too low dose but my consultant told me they could be bought cheaper over the counter and were the same as what he would have prescribed. I am meant to take with a glass of orange juice to aid absorption ( I am also meant to take calcium and vit D tablets as well)

Sometimes I get Ferrous Fumate, but tolerate the others better.

I am in a very similar position to you op. My ferritin is 4 and HB 9, I have been like this for years due to very heavy periods and have stupidly just put up with it. I feel like I am wading through life in concrete boots. All the iron prescribed by my GP has wrecked my stomach (I have IBS), even Floradix. Only Spatone is ok but my doctor says that’s not much better than water. I was referred to haematology for an infusion last month but it was refused, they wanted me to get my blood checked again today so I’m hoping they will agree for me to have an infusion.
Do you know the reason for your anaemia? I have awful heavy periods and am due an ablation this Wednesday but am thinking of asking for the Mirena first.
Definitely ask your gp for a referral to haematology, it’s a horrible way to live, constantly knackered and low in energy amongst so many other things, must be even worse with young dc.
Also take a look at The Iron Protocol FB group, they have some great advice on there.

Perhaps I'm wrong but I thought the take-up of Floradix was good, so you can't simply compare doses with less well absorbed supplements. Anyway I'd be taking it straight away while you pursue treatment through your GP. No way can you accept your levels as normal.
I got my ferritin levels up from 6 by thinking about iron in everything I ate. I had liver once a week, beef stews, molasses, mussels and shellfish, whole grains, dried fruit, tahini, greens - the lot! - along with Vit c so it was absorbed. I avoided coffee too as it's supposed to inhibit absorption.

@RedPandaWanda

I am in a very similar position to you op. My ferritin is 4 and HB 9, I have been like this for years due to very heavy periods and have stupidly just put up with it. I feel like I am wading through life in concrete boots. All the iron prescribed by my GP has wrecked my stomach (I have IBS), even Floradix. Only Spatone is ok but my doctor says that’s not much better than water. I was referred to haematology for an infusion last month but it was refused, they wanted me to get my blood checked again today so I’m hoping they will agree for me to have an infusion. Do you know the reason for your anaemia? I have awful heavy periods and am due an ablation this Wednesday but am thinking of asking for the Mirena first. Definitely ask your gp for a referral to haematology, it’s a horrible way to live, constantly knackered and low in energy amongst so many other things, must be even worse with young dc. Also take a look at The Iron Protocol FB group, they have some great advice on there.

Sounds very similar to my situation! Almost relieved to hear I’m not the only one living like this. My GP said that as the iron levels go down over a relatively long period of time, your body gets used to it, so you just think it’s normal to be exhausted all the time.

I hope you get that infusion, fingers crossed. And I will check out the fb group

And no, I have no idea why my iron is this low. Periods haven’t changed. I used to have normal or slightly low iron at times but never like this. Three pregnancies maybe explains it? And I sort of went off my food, it’s been hard to eat properly but I’m making an effort to get at well

@AnnaMagnani

You can buy a proper iron supplement over the counter for cheaper than a prescription charge in the UK.

You only need to take it once a day with some orange juice.

Veg is not going to cut it. The amount of leafy greens you would need to eat to raise your Hb, an elephant would struggle with. You need meat, proper iron, sorting your periods out.

But prescriptions are free in most of the U.K, it’s only England who pay for them.

Did you forget that England isn’t the whole U.K.?

Treat it.
Its not just about iron in your diet, it's all about absorption. Have vitamin C to aid absorption.

Iron in leafy greens is a myth. Someone once put the decimal point in the wrong place, and we've been undoing that misinformation ever since.

"On the low side" is the understatement of the century! I am amazed how passive you are being in all of this. You need to take your iron supplements daily, not when you "remember", and with Vitamin C - a decent formulation will include Vit C but adding more doesn't hurt and may increase absorption. The odd bit of spinach and steak will not fix this. There are, as others have pointed out, many other forms of iron, that may suit your stomach better. I am amazed you have not investigated this yourself, simply by reading the labels of the bottles in the chemists, or apparently read any guidance online for your situation. I am also surprised you are not experiencing flaking, brittle, and ridged fingernails and hairloss/inability to grow/bad condition hair, already, but that's something to look forward to. You don't have to live like this, but you really will have to make a concerted and consistent effort over a long period of time - months and years, not weeks, and certainly not just an iron pill when you remember, to improve your levels.