Low iron, can't get any help

[IshipTomHardysohard]

Hiya I've have hit a brick wall with getting any treatment regarding my low iron levels.

I've always had anemia since having periods I'm now 35. A few months ago I moved house and it was extremely stressful. My youngest has sever autism and he found the move very hard. I developed psoriasis, it took the doctors a few weeks to work out what the rash was, I was then put on 4 different and strong steroid creams until the found one that actually helped the psoriasis.

The weekend of may bank holiday ny taste started to go, first of all the doctors thought it was oral thrush. Had several treatments to cure it, my taste still didn't come back. Eventually they did some blood tests and it came back saying I was extremely anaemic. I can't take iron tablets, they make me very ill, we tried the liquid version and I also had a reaction to that.

While all this was going on all I can eat is the odd price of toast, build up milkshakes and some cereal. I've lost 2 stone now. I went to the dentist just to rule any mouth problems out as the doctors were not helping at all with the lack of taste now. I have developed anemia tongue. So the only way to get my taste back is to get my iron levels up. I went back to the doctors and saw a new doctor. He referred me urgently for a iron transfusion. That was 2 weeks ago, today I found out that the hospital have said no to the transfusion and have referred me to the gyni 

I don't know what to do anymore, I'm so down because I can't eat, I feel like death warmed up. And now even if I can manage to eat anything, I'm throwing it back up now. I constantly feel light headed and have fainted a few times. My kids finish school Friday and I'm so worried I'm going to faint and scare them,

I'm going to go back to the doctors tomorrow to try and find out why I was turned down for the transfusion. And see if there is any way I can still get it down. If anyone has any advice on this I would be ever so grateful.
Thanks for reaching

[LovelyBath77]

Could they give you oral iron instead?

[IshipTomHardysohard]

Hiya thanks for the suggestion, but I can't take the tablets or medicine. They make me feel ill, sick with stomach cramps and feel like hell

[kyz1981]

Do you know why your anemic ? I had very low iron and still do it turns out that I had undiagnosed ceoliac disease, its left me unable to absorb iron as my villi are so damaged so I am awaiting the healing process whilst fighting for a transfusion and living on iron tables, vitamin C and spartone in the hope that something helps. I have also been given oral contraceptives to stop my periods to prevent me from loosing more iron. If my levels still do not come up they will have to transfuse or give me injections to bypass the stomach.
With your symptoms I would be heading straight back to the GP. I would also be trying to take spartone which is gentler on the stomach.

[LovelyBath77]

Yes, you can get gentler iron but sometimes not on prescription. I got one called Hemaplex which was good. HTH

[LovelyBath77]

or Spatone, as suggested.

[fenneltea]

It sounds as if the best way forwards will be to treat the root cause of the anaemia, if this is caused by heavy periods then your gp can prescribe tranexamic acid or norethisterone to stop your period until your gynae consultation.
Hopefully the gp will be able to prescribe something to boost your iron intake, but make sure you're eating plenty of iron rich foods too, and taking vitamin c can help boost iron intake.
I hope you feel better soon, anaemia can make you feel dreadful.

[Diamond25]

Spa Tone is very gentle & you can take 2 sachets a day but it's not enough for severe anaemia to build up the stores.
I can't tolerate iron tablets either & get severe stomach reactions to various ones I've tried.
I had iron injections but I am in Australia & they give injections or infusions ok here as we pay to see the Dr.
I had 5 injections in the bottom over 2 weeks but it leaves terrible staining like massive bruises that took 2 years to fade. The needle is very large & painful. I still got a systemic reaction after each injection & weeks after too, I had an upset stomach but not as bad as taking the tablets.
With the infusion they pour all 5 injections into a bag & you get it all at once. I don't know if I would have had a worse reaction if I'd had it as an infusion.
I have heard from some reason in the UK thet are reluctant to do iron injections or infusions.
I hope you get somewhere with the Drs. Say you don't feel safe as you feel dizzy & faint & we looking after children. They shouldn't let you go on as you are.

[Groovee]

I was referred to gynae because of my low iron and the link they felt was to my periods.

I had an endo ablation on Friday. Started back on iron tablets yesterday and my diet has a lot of iron in it. Really hoping this works as for 2 years it's been a failing cycle. My skin is horrific, my hair is so thin, I feel like crap.

My mum offered to pay for an iron transfusion if it was needed for me. Could you ask the GP the same. I was turned down prior to the surgery because any iron I put in was being bled out. So it would be a waste of money.

[Pleasemrstweedie]

You actually need an infusion NOW, but you probably won't get one. That would bring your levels up within 48 hours or so. That would give some space to look for the underlying issue.

If they won't do that for you, then you're stuck with oral preparations. I sympathise with you. I could''t take ferrous sulphate, or ferrous fumarate, which was all the NHS could offer, but I finally had success with this: www.cytoplan.co.uk/wholefood-iron recommended by someone on MN.

Good luck

[EllenRipley]

Sorry you're feeling so unwell, that sounds awful. Agree with others, v important you get root cause sorted - but frustrating they're not giving you an infusion. If it's not down to heavy periods then as someone suggested, you should get tested for coeliac. I use iron bisglycinate, very well tolerated and more 'bio-available' than the usual prescription stuff. Nettle and blackstrap molasses are also very good natural sources. It might take a while but as soon as your stores are replenished you will get your health back, good luck x

[IshipTomHardysohard]

Thank all so much for the advice and support, have written all you have suggested down and will order and buy them.

It's amazes me how many of us have such a reaction to iron, but the doctors are useless at helping us with it.!

I went back down the doctors today to see what was happening, the gp managed to get me an emergency appointment with the gyni tomorrow. When they rang me to confirm I will be coming in she said that if I need a iron transfusion I'm looking at 2-3 weeks for one. Hopefully that will get my taste buds back running so I can start eating and getting myself back to normal so to speak. I do suffer from heavy periods, maybe now that can also be sorted out. So I'm not making myself anaemic every month

[Gettingonwithit1]

Can you eat liver once or twice a week with orange juice.

[Ktown]

You need to change your diet long term so you can do this yourself anyway: steak, liver, chick peas (houmous) and orange juice.
In the meantime try every iron supplement in the pharmacy and take a low dose to reduce side effects. If you remain aneamic you will feel horrific for years.
So sorry to read this- I have been through the same and it is awful.

[NuzzleandScratch]

You can take magnesium to counteract the constipating effect of iron, if that's the issue you have. You have to take it at a separate time to the iron though, otherwise absorption is reduced. Drinking black tea (no milk) or green tea can also reduce iron absorption, so avoid those.

[Mulledwine1]

You could try blueiron - www.blueiron.co.uk/ it's made with blueberries and might not cause you the same sorts of problems as more traditional supplements so.

It is stronger than spatone, which I didn't find gave me enough iron.

I also use soluble iron tablets, they are not that easy to come by in the UK but I bought Ferraglobin online.

[Diamond25]

I am in Australia & my DD has started taking this iron liquid called Maltofer. I looked it up & you can get it on Amazon. It comes as liquid & tablets. It doesn't upset the stomach.

[Diamond25]

Sorry not Amazin but EBay.

[Jaytee38]

I have anaemia and very low Ferratin due to heavy bleeding. They had to sort out cause of my bleeding before they'd consider iron infusion. I've just had my first iron infusion last week and get second this week. I'm NHS Scotland. Depot provera has been a miracle for me
Hope you get something sorted.

[IshipTomHardysohard]

Hiya just thought I'd give you all a update.

Had the iron transfusion on Friday!
I've had no nasty side effects, and feel pretty good so far. Just waiting for the taste buds to kick back in now. They have been boy working for so long think it will take a good week before they come back. But I know the end is near.

Gyni have also sorted a scan out, and for me to keep going to out patients.

Before all this kicked off I wasn't the best at looking after myself, my youngest has a disability, also have a 8 year old, single mummy. I've realised things have to change and I can't keep running myself ragged. Going to sort the heavy periods out, eat better and get more sleep.

Thank you all, you have all been so lovely and understanding.

[Groovee]

Glad you got your transfusion OP.

[fenneltea]

Glad you're getting sorted out, it just shows how important it is to look after ourselves too. Take care!

[Pleasemrstweedie]

Sopleased you have been able to have the infusion and that you are now starting to feel better. What they need to do though is find the underlying cause, even if it is only the heavy periods, which is what it was with me. Good luck for the rest of your journey.

[Janey369]

I take Tranexamic acid for heavy periods and it has made a huge difference. It's not hormonal, it just drastically reduces the amount of blood you lose