For wanting an iron transfusion now

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Been with lowish iron levels most of my life due to heavy periods but through vitamins and lots of steak as ferrous sulphate makes me very sick. I’ve managed to keep them up just enough to be ok. After my pregnancy I was given ferrous sulphate as i lost loads of blood and although it made me so nauseous and constipated I carried on with the dosage I was given as I’d lost so much blood I needed it badly. I got so run down after my pregnancy and everyone kept telling me I was just exhausted from my baby. I knew something was up but was dismissed until I insisted on an iron blood test. I also suffered from pnd as I just felt so weak out of breath and exhausted constantly Turns out I was severely anemic and sent straight away for an iron transfusion. After this I never felt better felt so good and energised. Since then my periods are still extremely heavy even with transanamic acid. I’ve been so exhausted as of late I’m getting nine hours of sleep napping when baby is at nursery so out of breath having to sit down after a short walk. I requested another test and low and behold I’m low again not as low as last time but borderline. I’m really scared of getting worse again I burst in to tears on Tuesday as I just had to sit down from walking up the stairs and my baby was screaming at me over wanting to be carried back down stairs. I’ve got a call back regarding my results on Monday and I know they won’t offer me a transfusion until I’m under the limit. They will suggest I take some iron from the pharmacy but it makes me so nausea all day every day and the lower dosage that I’m on just isn’t enough. I’m trying for another baby so waiting for that to happen and then I will be stopping my periods. I have some small savings so have considered paying privately for one but it’s a huge cost.

They usually have to try oral treatment first due to the risk of anaphylaxis with the iron infusion. It’s definitely worth asking though.

Have they looked for other causes for your breathlessness eg blood clots? If your haemoglobin is borderline rather than significantly low then it shouldn’t make you so breathless that you can’t carry your child or walk upstairs.

Have you tried Maltofer iron tablets?

Haemoglobin is low ferritin is extremely low at 14

If you are above the threshold for a transfusion on the NHS guidelines then your only option is to go private.
I think you have posted about this before?

I recommend Spatone- a liquid iron supplement (basically natural iron rich water) that you can safely take up to 2 sachets of each day. I dont get on with tablets either and this is much more easily absorbed and helped me go from being anaemic to fine in a few months on the 2 sachets a day. They sell it at supermarkets including Tesco, and online

14 isnt dire, so I'd say you are unreasonable - yes

there are other oral iron salts you could try that you might get on better with. Are you sure it's iron deficiency causing the symptoms though? Lots of us get no symptoms at all with a ferritin that high so it's worth thinking about other things too (but also worth remembering that iron stores aren't the only thing that can affect ferritin). Sounds like you need a better plan to manage the heavy periods otherwise it's never going to get any better.

Spa tone doesn’t have anywhere near enough iron in it to treat a deficiency, it’s basically iron flavoured water. The OP needs daily high dose iron taken with high dose vitamin c for absorption.

14 is pretty bad given most menstruating women only feel ok with ferritin of 75-100. The range the NHS uses is wild and doesn’t account for menstruating women.

you just be feeling awful OP. Can you ask for a second opinion?

Have you tried Sodifer liquid? I can’t tolerate iron tablets, but this worked ok for me.

Have you told your GP that ferrous sulphate makes you sick? They can offer alternatives like ferrous fumarate.

Also look at Floradix as a supplement.

OP- Dr here. I’m sorry you struggle with oral iron- have you tried ferrous gluconate or federate, some people get on better with this especially in liquid form? Also, sometimes taking in an empty stomach can help some (not all). Failing that, ferric maltol (ferrucu) can be tried as it is sometimes better tolerated than any of the iron salts. Anecdotally, this has been a good option.

unfortunately, if you don’t meet local clinical criteria for iv iron transfusion then everyone’s hands are tied, even if we are sympathetic. You have said your ferritin levels but not your Haemoglobin levels, but I assume your Hb is below 120g/L. If it isn’t you would meet criteria for it iron infusion according to our local criteria, no matter what your ferritin is. I’d add in, that you have to have been shown to be genuinely of intolerant of 3 iron salts and ferric maltose- or not responding to oral replacement (e.g. due to absorption problems). If you want a quick solution, and you don’t meet local criteria then your option is to go private, I’m afraid.

It might be worth discussing with your gp (if you haven’t, I’m guessing you probably have) why your periods are so heavy. I know it can be difficult to get to the bottom of it, and sometimes there isn’t a reversible cause, but that would probably be better than continually topping up the iron. I know it’s a longer term process which doesn’t help right now though.

It’s only going to go down I got as low as 2 last year iron deficiency is anything less than 30 I want help now not once it’s extremely low

You need to try ferrous fumarate before a transfusion.
Transfusion carries own risks such as staining/ bruise on arm. Reactions etc

Haemaglobin was 114 I have endometriosis numerous surgeries and medication hasn’t worked so trying for baby no2 then onto to something like the pill to pause my periods temporarily. Thank you for your advice.

Sytron liquid. I'm not saying it won't upset your stomach, but I found it tolerable, having never tolerated any other iron formulation. And it's a proper high-strength formulation so I did manage to absorb plenty. Being a liquid you can easily tweak the dose if the maximum is too much.

You will need to try different formulations if they won’t refer you to the infusion service. Have you tried one iron tablet every second day? I find taking it before bed is least likely to make me feel unwel. It helps to take it alongside 1000mg of Vitamin C.

There are also long acting tablets (Ferrograd), ferrous fumerate and Maltofer to try.

I have endo and taking naproxen from first spotting hugely decreases the flow, I don’t find Tranexamic acid very useful on its own.

Have you considered a Mirena coil , may possibly help with the period , reducing the anaemia , allowing you to build up levels again ?

I can't do iron salts either, but had no trouble at all with iron bisglycinate. There's also ferric maltol. They are more bioavailable and easier to digest and therefore cause far fewer digestive problems.

Yes it would be nice if the NHS would give us iron infusions at a less depleted level. But they aren't going to change it for you, so you are going to have to help yourself. Try iron bisglycinate and ferric maltol, and take them first thing with orange juice, at least half an hour before you eat. Go for another ferritin test in two months or so and see what your levels are then. If they have stabilised/improved, great. If they haven't, you can say you have tried everything and an iron infusion is the only option.

My ferritin is 12 , same as you I’ve been low forever and don’t absorb iron , had a transfusion 6 years ago and want another but gp explained the path to that is oral iron or liquid with gastric tablets for stomach, some investigation or to check you have no stomach bleeding then the haematologist can tick off their list that you’ve tried this and that and all investigations clear and you may get iron injections or a transfusion , just follow the steps and asked to be referred , other than that it’s private, I’ve never been able to absorb iron but my last transfusion I was between 2-4 so has to get pretty bad not that I don’t feel pretty bad atm but that’s the sad reality.

Get some iron tablets from the pharmacy 🤷‍♀️ they aren’t as bad as the prescription ones I’ve found and also you should be taking them with vitamin c and b12 or there’s no point as it won’t be absorbed properly.
get your periods sorted out too asap as that is the cause of the anemia and once you’ve finished having children have a hysterectomy- best thing I ever did after a lifetime of iron levels down to 6 most of the time and infusions and blood transfusions regularly not working. You need to see someone to manage your hormones and probable endometriosis/adenymyosis as that is more than likely the cause of the excess bleeding

have you tried taking them every other day? That’s the advice now to minimise side effects
I take ferrous fumerate (can just buy it) with 1000mg vitamin C every other day and find it a lot better

I'm quite surprised you're feeling that exhausted with a level of 14. Mine was 8 two years ago and yes, I felt tired, but I was still running 3x a week and living a completely normal life - I actually had no idea my ferritin was so low.

As you are feeling this awful though and you know how the last iron infusion made you feel, why not ask the GP if you can have one? The worst he can say is no. And if he does and you can afford it, get a private one. The Iron Clinic will give you one if your ferritin is below 30 and you've got recent blood tests to prove it https://www.theironclinic.com/

It varies enormously between people. I had ferritin of 8 and hb was 100, and I felt absolutely fine, not even slightly tired. Everybody is different, but the point is OP does feel terrible.

I felt rough as guts at 20 back in summer last year. My heart rate was accelerating during exercise and I was finding lifting weights and HIIT really hard going, plus I was permanently exhausted. My doctor prescribed supplements after testing my ferritin.

My ferritin has been as low as 4 so it wasn’t a matter of it being my first rodeo with iron deficiency anemia. 14 IS low and not in range for our NHS area.