Anyone had an Iron Infusion?

[BriefcaseOfFacts]

I am anaemic and have not been able to stomach iron tablets or liquid so have been advised to have an iron infusion.

Dr Google seems to suggest there can be serious side effects but presuming that it goes ok , how did you feel immediately afterwards? I know it will take weeks for it to have an effect on my iron levels/anaemia.

[EightToSixer]

I have them every six months or so (1 a week for five weeks each time).

I have to go to the local hospital for mine, they hook up a drip and inject the iron into it, it takes about 20 mins to 90 minutes depending on how you tolerate it.

Symptoms
Initial slightly higher blood pressure due to increased fluid which manifests itself in pink cheeks in me.
I instantly get the taste of metal in my mouth, but it doesn't last long.
After about 24 hours I get a headache that lasts a couple of days, but it can go with paracetamol.

Other than that nothing. I've had three courses so far (following emergency blood transfusion of three units two years ago). It takes about three weeks to begin to feel the benefits, so quicker than the tablets which I can't stomach either.

Does this answer your questions, happy to respond to any more if you need it. Hope you feel better soon :)

[BriefcaseOfFacts]

Thanks eighttosixer that is good info! Do you feel tired afterwards or is it just drive home and carry on as usual?

My haematologist seems to think I will really notice a difference once I start getting some iron in me. I've been tired for quite a ŵhile now ans it seems like the new normal if you know what I mean. Am secretly hoping in a month or so to feel like superwoman

[EightToSixer]

It does make you feel much better. You only realise how rubbish you have become accustomed to feeling when you begin to feel better. When I'm anaemic my hair falls out, I get foggy headed, weepy, exhausted, depressed etc etc. iron infusions are very effective.
I drove to and from each appointment, but didn't feel like rushing onus the rest of that day. The worst side effect is undoubtedly the headaches, but compared to anaemia, it's tolerable for a month or so.

[idlevice]

When I had my iron transfusion I was told there was a very small chance of an allergic reaction & due to that, they start the transfusion rate very slowly at first & monitor you to check if you're ok before they ramp the rate up. I didn't notice any side-effects, but I was feeling so rubbish I doubt I would have noticed.

I had mine a few days before I had DS2 so I can't say if I felt more energetic or not! Also my transfusion lasted 8-9hrs - must have been due to amount I needed and circumstances, up to 90mins sounds much more sensible.

[MultipleMama]

I was hooked up for an iron IV for 5 hours the other day due to extremely low levels. I will have another in 2 weeks. Then go from there. I feel slightly better, no side effects as of yet.

[HDEE]

Can I ask, what are your levels when they give you an infusion?

[galwaygirl]

I just had two recently following the birth of DC2. Like another poster above I had a small amount then a break to check for allergic reaction then the rest - that was the first time. I was pretty high from the birth and having brand new DS so I didn't notice feeling too bad. My hb was 82 before the infusions and a week after the first one it's 101 so they're definitely way better than tablets! I was amazed at that increase.
I haven't noticed any ill effects from the infusion but again hard to tell as with a newborn I'm all over the place anyway!

[BriefcaseOfFacts]

Thanks everyone! There are some horror stories online this is much more reassuring.

My ferritin was 8.7 a few months ago (no doubt is lower now as hb had gone down in 5 weeks but I wasn't told the reading) and haemoglobin 10.1, I'm not pg and don't have periods so I shouldn't be anaemic, they are currently investigating me to try and find out if I am losing blood internally. Lovely eh?!

I think having the infusion rather than tablets is due to your tolerance of tablets/liquid. I found them really hard on my stomach (constipation and stomach cramps with iron tablets/diarrhea and stomach cramps with liquid iron) which is why I am having the infusion.

[EightToSixer]

Hopefully you will have more luck with the investigations OP. I'm 23 months not mine and have been signed off by three departments, waiting for gastro cameras now to see whether I'm either not absorbing Ron or losing it gastro-somewhere. The HHS is being and has been ridiculously slow and UN-connected departmentally for me unfortunately, with six months wait for each department each ime.

[dottyaboutstripes]

This is interesting. My ferritin is 2 and haemoglobin 8.5 with no obvious explanation. Dr suspects coeliac so I've had bloods taken (seeing GP on Mon for results) and if negative, he says they will investigate internal bleeding with cancer in mind

[BriefcaseOfFacts]

Oh Dotty, your GP is a massive alarmist (unless you have lots of other symptoms). Firstly coeliac can only be indicated by blood test, conclusive diagnosis only comes from biopsies of your gut (lovely term eh). Secondly, there can be many, much more benign reason for internal bleeding such as polyps or a burst blood vessel in your bowels or a stomach ulcer. My information comes from the consultant gastroenterologist I am seeing. Why your GP would jump straight to a possible cancer diagnosis I am not sure.

Those numbers are very low - you must be feeling awful, you poor thing. Please ask to be referred to a gastroenterologist rather than getting this frightening half-information from your GP.

[EightToSixer]

I second what Briefcase says too Dotty.

There are about 150 reasons for anaemia before you get to the possibility of cancer. It must be frightening to hear that, especially while feeling so awful. First things first, get a transfusion or infusion ASAP and then check the other possibilities like heavy periods, fibroids, absorption issues and things first.

[dottyaboutstripes]

Well of course I googled! And coeliac testing was standard in anaemia like this from what I found. I don't have heavy periods and I eat a decent diet so no clear cause. But I was amazed when he said the C word! If I have some kind of internal bleeding its not coming out anywhere.
I am just SO exhausted. It's like permanent jetlag

[BriefcaseOfFacts]

My gastroenterologist said you can get negative coeliac blood test but can be coeliac and positive one and not! Actually a haemotologist might be best way forward for you and then they can sort out transfusion/infusion and send you to the right department for investigation.

In my opinion your GP was irresponsible bandying the word cancer about at such an early stage on your behalf. Has he even prescribed iron tablets yet? (although at those levels it will take a while to notice an improvement)

[dottyaboutstripes]

Yes I started on the iron on Friday. Funnily enough, my nephew has coeliac disease but his bloods were fine.
I thought exactly the same, how irresponsible of the doctor. He specifically said bowel cancer - and my grandfather died of it. I sat there silently freaking. But the odds of it are really slim I know

[EightToSixer]

Dotty when I first found out I was anaemic I had a call from the GP saying "get to hospital right this minute they are expecting you for an urgent blood infusion", he had me very worried about potential bowel cancer too, but two years later they still have not found a cause. Try not to panic about the worst case scenario just yet.

[Littleturkish]

I have had one and would DEMAND another if my iron drops that low again! It was great. Took a week for it to kick in, but it got my iron up high enough to have my baby in the midwife unit so I was happy!

I also can't have the iron tablets, have Ulcerative Colitis and was pregnant so needed them up. Was amazing, I was so used to being permanently anaemic it was a novelty to have levels of 9.5!

Really should get another blood test.

I hope they find your cause soon! Have they tested your stools? Have you been referred to a gastro expert?

[MrsPinotGrigio]

I had an iron infusion last year. I have Crohn's disease & can't take iron tablets as they cause constipation. It took a few weeks but my hb level went up from around 8 to over 10. It's been the same level for a year now so haven't needed another. This is the highest my hb level has been for a while - I've had 2 transfusions cos it was so low. Hope you feel better soon.

[classifiedinformation]

I'm currently (attempting) to take iron tabs as my hg levels are only 10.3. They are making me feel awful, I was taking 3 a day, but had such a bad reaction I thought I had a tummy bug.

The Dr has lowered the dose to 1 tab every other day and I'm still getting diahorrea pretty badly (have ibs) and have had to start taking loperamide to cope with it so that I can actually go out! Dr seems to be reluctant to try any alternatives, how long did you have to suffer side effects from the tabs before your Dr tried something different. Getting desperate here.

[idlevice]

What tablets are you taking? Some formulations are better than others in terms of iron absorption and effect on tummy/bowel. The more commonly available & cheapest compounds are the worst offenders, eg ferrous fumurate. Iron bisglycinate is a more absorbable one, haeme supplements are the most absorbable (try Victoria Health online shop for examples).

Also check what else you are eating/drinking when taking the supplements. I believe you should take with Vit C at the same time to increase absorption but avoid tea at the tannin inhibits absorption. I'm not exactly sure & there may be some other food/drink combos to avoid so have a google around.

Check B vitamins as well, as lack of B12 I think it is can also contribute to anaemia. And your iron store levels should also be looked at, as well as just the circulating Hg levels.

[classifiedinformation]

I am on the ferrous fumerate. Dr has refusef to change it he says that other tabs are pretty much the same, although tbh I think this is more to do with pricing. DP had to come off his ADs (prescribed by previous surgery) as they were deemed too expensive for this surgery and he didn't fancy changing tabs, so just weaned himself off.

They are pretty good in the main, but not with this. I will make another appt for next week.

[classifiedinformation]

Oh, forgot to add my iron stores were pretty low a few years ago and since then my hg levels have decreased, but have no idea whether my stores have gone down too.

Dr thinks the culprit is heavy periods and has told me that I could get treatment for that to see if it helps, will mention that next week. Really fed up of being so exhausted.

[gobbin]

I've had infusions as I have Crohns too. Levels went from 10.2 to 12.5 (or 102 to 125 - they've taken away the decimal point when reporting figures now).

The difference became noticeable very gradually and took about 4 months before I felt significantly better. It's wearing off again now tho and I could do with a top up.

OP the scare stories you may have read online relate to which preparation of iron is given. They will be most likely giving you the one that people generally don't react to, so don't panic! They will keep a close eye on you and monitor blood pressure and ask you how you're feeling regualrly during your first infusion. I felt nothing different at all during mine.

[BriefcaseOfFacts]

Thanks Gobbin, google is both a useful and a massively unhelpful tool
It's frustrating at how slowly things move with treating anaemia. When my blood tests first came back from my GP he said he wouldn't start giving me iron until I'd seen the haemotologist to find out why I was anaemic. It took a month to see her (and that was privately so quickly compare to the NHS!). Then I tried the tablets for a few weeks, no luck, spoke to the haemotologist and she suggested the infusion, then of course it's a few more weeks to wait for that and then when it's done it will be a few more months before it starts having an effect!! If you go in with tonsillitis you have antibiotics within the hour.

I know I shouldn't be whinging, eighttosixers time frame makes mine look like lightening speed but I'd just like to stop feeling as if I'm doing everything through a layer of fog iykwim.

Aaaaah, grumble over. That's better

[Littleturkish]

Briefcase- get knocked up, you get seen at lightening speed!

;)