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?

OP- As many of us have suggested, being anaemic long term IS bad in itself and your ARE putting yourself at risk! Not only feeling dreadful, short of breath and tired among other things, but it also makes your immune system weaker and FAR more susceptible to other conditions! Covid for one, influenza, but even so called more minor illnesses you'd usually just fight off like UTI, norovirus etc you could get very unless from with life long issues!!! I'm also unsure why you keep mentioning insurance when you are in the UK and your insurance clearly isn't covering anything anyway? Your GP has already referring you to a hematologist, so what has this anything to do with your insurance?

If this is related to heavy gynae bleeding, then you need a gynae referral and checks for peri-menopause, fibroids etc. It could be related to slow bleeding from elsewhere or mal-absorption of your iron supplements. If your NHS GP is dreadful, then see another at the same practice! I can't believe you have put up with this for years! Sometimes you need to push for help.

My ferritin and Hb were both higher than yours (and my symptoms milder) and my GP put me on heavy duty prescription iron tablets until they came back up. You need to go back to your NHS GP (or see a different one in the practice) and at least see if you can get the prescription tablets to see if things improve.

I feel reassured to hear about how others have had very similar levels to me, and have managed to improve things on their own by taking their supplements regularly, so I’ll set a daily timer to remind myself.

So my question is if I am somehow putting myself at risk if I don’t manage to improve my iron levels?

You’ve had this answered a number of times already in the thread.

I guess not, or the insurance and my NHS GP would have referred or treated me?

You seriously believe that insurance companies never try to get out of paying for something, or that GPs are never wrong?

My ferratin went lower than 3 - but you can get it treated on the NHS (assuming UK) - or OTC iron supplements like plant based floradix.
You may need to try diffent types of iron supplements to find one that suits you - they can have side effects (weirdly constipation AND diarrhoea) - whatever you get, you do have to remember to take it .
If the underlying problem is heavy periods, do look at getting that sorted too - and beware of taking tranxaemic acid over a long period of time, I found it not particularly effective at reducing severity of periods (well, who knows, maybe it did, they might have been even worse without it!) but great at making my blood clot, I ended up in A&E with DVT.
If your GP isn't great at resolving/investigating the gynae issues, arm yourself by reading the nice guidelines.

On reflection, my periods had always been heavy (I hadn't realised ) - but did get worse in my 40s - Fibroids and thickened womb lining - but you should get this investigated.

@Hairyfriend

OP- As many of us have suggested, being anaemic long term IS bad in itself and your ARE putting yourself at risk! Not only feeling dreadful, short of breath and tired among other things, but it also makes your immune system weaker and FAR more susceptible to other conditions! Covid for one, influenza, but even so called more minor illnesses you'd usually just fight off like UTI, norovirus etc you could get very unless from with life long issues!!! I'm also unsure why you keep mentioning insurance when you are in the UK and your insurance clearly isn't covering anything anyway? Your GP has already referring you to a hematologist, so what has this anything to do with your insurance?

If this is related to heavy gynae bleeding, then you need a gynae referral and checks for peri-menopause, fibroids etc. It could be related to slow bleeding from elsewhere or mal-absorption of your iron supplements. If your NHS GP is dreadful, then see another at the same practice! I can't believe you have put up with this for years! Sometimes you need to push for help.

It was my private GP who referred me and I need approval upfront from the insurance company before I can book any further appointments, otherwise they won’t cover any of it. They always make their own decisions, their job is obviously to approve as few referrals and treatments as possible…

I did try my NHS GP too but she wouldn’t refer me or prescribe anything

I forgot about this but it can get really bad. My dad was bleeding, and didn't tell anyone or do anything about it. Eventually he went to the GP and mentioned "a little bit of blood" and they did blood tests that morning

By 3pm they had an ambulance there for him with him protesting he needed to finish work. Somehow they bundled him into the ambulance and he had two blood transfusions. Turns out he had polyps (I think they're called) and every time he went to the toilet he was pouring blood out and decided it wasn't worth mentioning
He did eventually agree he felt better after the transfusions!

@ThinWomansBrain

My ferratin went lower than 3 - but you can get it treated on the NHS (assuming UK) - or OTC iron supplements like plant based floradix. You may need to try diffent types of iron supplements to find one that suits you - they can have side effects (weirdly constipation AND diarrhoea) - whatever you get, you do have to remember to take it . If the underlying problem is heavy periods, do look at getting that sorted too - and beware of taking tranxaemic acid over a long period of time, I found it not particularly effective at reducing severity of periods (well, who knows, maybe it did, they might have been even worse without it!) but great at making my blood clot, I ended up in A&E with DVT. If your GP isn't great at resolving/investigating the gynae issues, arm yourself by reading the nice guidelines.

On reflection, my periods had always been heavy (I hadn't realised ) - but did get worse in my 40s - Fibroids and thickened womb lining - but you should get this investigated.

I take Floradix! It’s the only one which doesn’t give me gastrointestinal trouble…

I think I can’t take tranexamic acid due to elevated platelets? Periods have always been the same so I’m not that concerned about them, if anything has changed in the last years it’s probably my diet

Sorry OP, but your insurance issues have been a drip feed and weren't clear from the start. I would still see a different GP at your NHS practice if your private GP isn't looking into things. At least you'd have have a 2nd avenue for help whilst awaiting the hematologist referral.

I'm not sure who your insurers are, but their response is APPALLING. Unless they're spying on you, or you admitted to living on ice cream and vodka, how can they justify this?

Meanwhile, you need an iron infusion.

The problem is that when you're this anaemic, you don't really have the will to have good compliance. Everything is too much of an effort.

Ironically, if you are anaemic, you usually have heavier periods.

I cannot believe you got a far as a haematologist and didn't get an infusion.

Your GP obviously wanted to help, in that they requested an infusion. Did the request just go to a private hospital needing insurance approval, or were you requesting it at an nhs hospital? It maybe a clinical decision, but we now know that women are treated unfairly in health care, and expected just to put up with things.

I'm also baffled that no one had checked your gut.

If your periods haven't changed, how do they know you haven't got a gut problem, micro bleeding? coeliac? There are tons of potential issues.

Meanwhile I agree with go back and pester. Transexamic acid from them, and another request for an iron infusion from them, and ask about absorption/gut.

Meanwhile, buy a serious iron supplement, yes to the fumerate version. And set an alarm to take it every day, before/with a meal.

Try even for 2 weeks, when you're nearly at zero you'll start to get better much more quickly. The red blood cells don't all turn over in one go .

From day one of taking the supplement, every new rbc will pick up some iron, until you'll be at max in 3 months. So some people feel the benefit within days.

IF you get through 2 weeks, try another 2 weeks. If you get to 8-10 weeks with literally no change in your energy levels, you need to go back again to your gp, and ask for further advice.

Coeliac disease is one of the most common causes of anaemia, and given your periods haven't changed I'd say a gut reason is far more likely. When you cannot tolerate gluten (or avenin in oats), the vili that usually stick out in your gut get flattened, and can't absorb nutrients. It would be interesting to know what your b12 and vit d look like too.

You can suddenly become coeliac, after illness, with age, etc etc. It can been genetic, which the gene being expressed only after many years and/or stress such as illness.

Forgot to mention - something to be aware of is that caffeine impairs absorbtion of iron from food - and presumably supplements.
I had decaffeinated drinks for a few years, and it was about ten years before I started having the occasional coffee after a meal.

OP- Floradix is a general vitamin supplement for iron maintenance. It will not correct an iron deficiency such as yours! It contains 15mg of iron. A prescribed supplement to help correct an actual deficiency such as yours would be over 100mg a day! Didn't either of your GP's prescribe an iron supplement with Hb and ferritin levels as low as yours- rather than advising an extremely low dose over the counter iron supplement???

I did discuss an iron infusion with GP -at the time it wasn't available on NHS until the iron supplement route was exhausted.
Looking back, I was initially prescribed Ferrous sulfate, then switched to Ferrous gluconate. I was on them for about nine months in all, but my iron levels were much improved after about three months.
As PP has suggested, Floradix is weaker than prescription supplements.

X post, just seen about the tran acid.

With the best will in the world, Floradix is like rearranging the deck chairs on the Titanic.

You will find fumerate hard on your gut, but then try one that's a glycinate/bis-glycinate.

In making big assumptions here, but if you're able to afford a private gp, and private health insurance, you can afford the best iron supplements.

Consider this the most important issue in your diary right now. Truly. Get some good stuff, and start taking it.

Also, it occurs to me, the decision to not let you have an infusion is a financial decision, not a clinical decision.

I think, in this instance, going private is actually doing you a disservice. (Not making any judgement on private etc, just observing the outcome of your situation so far).

You can buy ferrous fumarate, ferrous sulphate etc over the counter from a pharmacist. Buying it like this is cheaper than paying the prescription charge. I think this is what PP meant.

if Floradix has 15mg of iron, I was taking 3 x 300mg ferrous gluconate tablets daily, with each tablet containing 35 mg of iron - so occasional floradix won't help too much.

Don’t drink milk or have dairy around the time you take iron supplements. This was the biggest learn from me. It depletes iron by 60% . You have to leave something like two hours either side

The reason Floradix doesn't upset you is there isn't any iron in it!

You need to try different prescribable iron supplements and the current advice is that they are more effective at a dose of once a day than three times a day, which is also a lot easier on the bowels.

Ferrous sulphate, ferrous gluconate, ferrous fumarate. You can buy these in the pharmacy for not much.

I'd also agree that going private has not helped you.

I think it is the wording of the attempted referral which is why it has been rejected. The cause could be serious , the treatment is a different matter

Do you have heavy periods? If so the referral needs to be to a gynecologist for that.

Do you have abdominal pain/ change in bowel habit/unexpected weight loss /blood in your poo? Have you had a FIT test - any of these should trigger a gastroenterologist referral.

Either of the consultants could then get a haematologist involved for an iron infusion.

Agree with previous posters ferrous fumerate 210mg three times a day . It can be bought over the counter if you speak to a pharmacist. It is cheaper than a prescription

@lborgia

I'm not sure who your insurers are, but their response is APPALLING. Unless they're spying on you, or you admitted to living on ice cream and vodka, how can they justify this?

Meanwhile, you need an iron infusion.

The problem is that when you're this anaemic, you don't really have the will to have good compliance. Everything is too much of an effort.

Ironically, if you are anaemic, you usually have heavier periods.

I cannot believe you got a far as a haematologist and didn't get an infusion.

Your GP obviously wanted to help, in that they requested an infusion. Did the request just go to a private hospital needing insurance approval, or were you requesting it at an nhs hospital? It maybe a clinical decision, but we now know that women are treated unfairly in health care, and expected just to put up with things.

I'm also baffled that no one had checked your gut.

If your periods haven't changed, how do they know you haven't got a gut problem, micro bleeding? coeliac? There are tons of potential issues.

Meanwhile I agree with go back and pester. Transexamic acid from them, and another request for an iron infusion from them, and ask about absorption/gut.

Meanwhile, buy a serious iron supplement, yes to the fumerate version. And set an alarm to take it every day, before/with a meal.

Try even for 2 weeks, when you're nearly at zero you'll start to get better much more quickly. The red blood cells don't all turn over in one go .

From day one of taking the supplement, every new rbc will pick up some iron, until you'll be at max in 3 months. So some people feel the benefit within days.

IF you get through 2 weeks, try another 2 weeks. If you get to 8-10 weeks with literally no change in your energy levels, you need to go back again to your gp, and ask for further advice.

Coeliac disease is one of the most common causes of anaemia, and given your periods haven't changed I'd say a gut reason is far more likely. When you cannot tolerate gluten (or avenin in oats), the vili that usually stick out in your gut get flattened, and can't absorb nutrients. It would be interesting to know what your b12 and vit d look like too.

You can suddenly become coeliac, after illness, with age, etc etc. It can been genetic, which the gene being expressed only after many years and/or stress such as illness.

My vitamin D and B12 are normal so I think I tea not a coeliac issue in my case, but I agree this is so important to be aware of.

I never got as far as to see a haematologist, my insurance requires up front approval which was not given in my case.

I guess they feel that iron deficiency is more of an inconvenience than a medical concern, and as such can be managed through lifestyle changes. Healthier diet, exercise, supplements as needed. I think the key for me is to get better at taking them regularly. It gives me hope that previous posters have had their issues resolved this way

@Hairyfriend

OP- Floradix is a general vitamin supplement for iron maintenance. It will not correct an iron deficiency such as yours! It contains 15mg of iron. A prescribed supplement to help correct an actual deficiency such as yours would be over 100mg a day! Didn't either of your GP's prescribe an iron supplement with Hb and ferritin levels as low as yours- rather than advising an extremely low dose over the counter iron supplement???

I don’t tolerate ferrous sulfate etc very well, I have tried different versions in the past and the side effects were difficult to cope with. You can double up on the Floradix and eat red meat, spinach etc. It will just take a bit longer to work

@Swirlyspiral

Don’t drink milk or have dairy around the time you take iron supplements. This was the biggest learn from me. It depletes iron by 60% . You have to leave something like two hours either side

Thanks - I actually thought 30 min would do the trick!!

Don’t rely on the menopause helping you in the short term. Many, many women experience much heavier periods in the peri menopause.

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.

@lborgia

X post, just seen about the tran acid.

With the best will in the world, Floradix is like rearranging the deck chairs on the Titanic.

You will find fumerate hard on your gut, but then try one that's a glycinate/bis-glycinate.

In making big assumptions here, but if you're able to afford a private gp, and private health insurance, you can afford the best iron supplements.

Consider this the most important issue in your diary right now. Truly. Get some good stuff, and start taking it.

Also, it occurs to me, the decision to not let you have an infusion is a financial decision, not a clinical decision.

I think, in this instance, going private is actually doing you a disservice. (Not making any judgement on private etc, just observing the outcome of your situation so far).

Insurance is through husbands work. It doesn’t cover any medication. I agree with all PP who have pointed out that’s it’s not helped me to have this insurance at all. I am so fed up with it, it’s completely at their discretion if they cover something or not and more often they won’t - this isn’t just me, I read an article a while ago on this topic. Private health insurances will recommend cheaper treatment options which may not be the most suited ones. This article focused on knee injuries from skiing, where the majority of insurers are not approving whatever the more costly therapy is, leaving patients with worse outcomes etc etc

I honestly didn’t know you could get these higher strength iron supplements over the counter, I have definitely learnt something new today.