Ferritin 9 - iron infusion experiences?

[BlondeBelle]

Hi All,

Looking for advice/experience with low ferritin ♥️

Due to low levels I have found the few years tough but it’s been dreadful particularly the last few months.

I can’t seem to stomach iron tablets as I have IBS-C and even when I up my prescription laxatives it is still tough on my bowels, so I have just been plodding on thinking maybe it’s normal to feel this way.

At my last blood test my ferretin was 9, haemoglobin 112, red blood cells 3.74 and haematocrit 0.336.

I’m so exhausted and crying all the time - I’ve can struggle on and off with low mood but this is pretty constant and I was very active up until a few months ago but now have no desire to do anything.

My Dr has been good and offered me an iron infusion as I don’t tolerate the iron tablets - can anyone share their experiences with an infusion?

Upon researching it just seems people have bad experiences or the permanent skin staining and it’s putting me off.

Many thanks!

ive Had iron infusions in the past when pregnant but even they only last a certain amount of time. I also struggle with bowel on iron tabs but have extremely low ferritin without.

I now take the mouth spray 10mg - 4 sprays per day and it’s sorted me out and no stomach issues as the spray goes straight into your bloodstream and bypasses the bowel.

My ferritin is 5 due to heavy periods, caused from multiple fibroids. I’ve stopped the tablets myself Can’t tolerate them but I would be interested in the spray ? Is it prescription only ? Thank you

I had an iron infusion back in February when my ferritin was only 5. My GP wasn’t interested but I have private health insurance through work and arranged it via them. The consultant haematologist I spoke to said when levels are that low, improving them with iron tablets is a long and slow process.

I had my infusion on a Friday, it only took 30 minutes then I had to wait for an hour before I was allowed home in case of any delayed reaction. Drove home and relaxed for the rest of the day. I did feel pretty awful for 24 hours a couple of days later which is very common. It’s called iron flu.

I started to feel better within a few weeks. The utter exhaustion was almost gone and lots of other niggly issues were greatly improved. Including ones I didn’t even put down to my iron deficiency. My ferritin had gone up to 113 on my follow up blood test.

No staining at all and I feel so good I’ve just completed the couch to 5k running program after being too knackered to do anything much for the last few years.

If you don’t want to go down the infusion route, then I recommend Three Arrows heme iron which is what I’m using to keep my levels up. It doesn’t interact with tea/coffee/dairy like normal iron tablets nor does it cause any gastrointestinal problems. It isn’t vegetarian though if that’s a consideration.

can I ask this as well is it on prescription mines 11 having to have a colonoscopy before they will give me an infusion despite already knowing I don’t absorb iron well, as I had an Infusion in 2019

I have iron infusions for ferritin and they are fine. It’s very calm in the hospital department where it takes place. I often start dropping off to sleep. I’ve always been absolutely fine afterwards although it takes a couple of weeks to feel the effect of it. I’ve never noticed any skin staining and I’ve been having them for years.

That’s reassuring, thank you!

Can I ask what mouth spray you use?

Thank you for the reply - amazing how much low ferritin etc affects us!

Makes me feel there is light at the end of the tunnel.

Thank you - great to hear you’ve had no experience of skin staining!

Good luck @BlondeBelle You’ll feel so much better after your infusion if you decide to go ahead.

The iron spray is Better You and it comes in 5mg or 10mg strengths. It is mild on the stomach but isn’t anywhere near strong enough if you have an iron deficiency. The higher dose options which are usually recommended for anaemia/iron deficiency have between 35mg and 65mg of elemental iron per tablet by comparison.

I've had a few iron infusions and they work very well for me. I've never had any staining at all. They make a huge difference - I've got rheumatoid arthritis and can't tolerate any iron that the consultant has prescribed. They normally take less than 30 mins and I have to wait for 30 mins afterwards to make sure there's no reaction. I feel so much better afterwards - good luck whatever you decide

I had one a few weeks ago. Initially thought I was reacting with iron flu but turned out I picked up viral meningitis (likely in the hospital) so it took a while before I felt the benefits. 7 weeks on a and I feel so much more myself. I was down to 6 ferritin level and struggling. My male gp delayed help for years but I cried to the female gp in February and she referred me, then in May i chased and she chased and I had a consultation over the phone then I was rushed in 2 days later.

I’ve had many iron infusions since 2018. 1 a year on average.
They are fine.
Take a kindle or just relax. Hydrate well before and afterwards. Relax during
I have had occasional side affects - mild headache, metallic taste in the mouth. But not every time.
About a week afterwards I just feel amazing. Full of energy and much happier.

I was sent for an iron infusion about 5 weeks ago when my ferratin was 5. I felt like a new woman within a few weeks once my red blood cells had a chance to regenerate. No side effects at all.

I cant beleive I was left feeling so bad for so long when it was resolved that easily.

From what I have read you are lucky to have been offered an infusion.
I'd grab it with both hands if I were you!

Hey the spray is Better Health Iron - 10mg

I really recommend you go for the infusion. It makes a real difference within a week or two. I’ve had half a dozen infusions now and have felt fine after all of them. No iron flu, nothing. I have once had a small instance of skin staining. Have posted a photo of it on my inner arm and you can decide whether you can live with that. For me it's been well worth it.

I've also recently tried the spray but haven't been tested again yet. It's not too bad. Might work as maintenance once you have the infusion - again, I would recommend it as the fastest way of getting your life back.

Low iron, fatigue and IBS: have you been tested for Coeliac disease?

I had an infusion just over a year ago and I felt much better for it. I have IBD so can’t tolerate oral iron.
I got some temporary skin darkening in areas where straps rub eg waistband but it all disappeared quickly. My nails stopped breaking and I no longer felt like I’d run a marathon by breakfast.

i think you’re lucky to be offered an infusion on NHS and I would take it, though I understand the nerves about the side effects as I am also a bit wary of those. Did you have to have gastro tests first? My GP referred me a few weeks ago for infusion for not tolerating oral iron but I can see on the app that the referral has now gone to upper gi assessment and I don’t know if they’ll accept the infusion referral, and if they do, if I’ll have to have the scopes first, because of my age (even though I’m pretty sure the low iron isn’t from a GI cause, but they might have to check anyway). The waiting list could be months from the sounds of it anyway.

Following, I had my first iron infusion on Monday.

Have the infusion. Don’t worry about the stories of skin staining.

My DH, teen DD and I have all had iron infusions multiple times. Love them. DD had very minor skin staining from her first one because she moved a bit when the cannula was being adjusted or something like that. We didn’t even notice it for months. At first I thought she had a bit of dirt on her arm or maybe a faint bruise. We eventually worked out it was iron staining. It’s gone now. It faded after a year or two. It was worth it to see colour in her face again and for her to have energy.

I will have no hesitation to have another infusion when needed. It’s about $250 to have done privately in my country. I’d easily spend that on iron supplements if I didn’t have the infusion. At least this way I don’t get constipation or tummy upsets and I start to feel like a human again after about a week.

You have to keep your arm with the cannula in very still while the infusion is running so take something you can do one handed for 30-45mins. Scrolling on your phone, a book to read or something like that.

My ferritin is finally remaining in a good range since I’ve had iron infusions done and had a Mirena to stop my periods. Lots of women have horror stories about Mirenas, just like you’ve found about iron infusions. Others have great experiences with nothing negative to talk about. Personally I’ve had great experiences with Mirena insertion and removal. Barely any pain. I just had my third one fitted. Great GP and she puts plenty of numbing gel on my cervix.

If the worst happened and you got a big iron stain then you could get a tattoo to cover it up.

I have had many due to a medical condition which means I can’t absorb iron. I have had quite bad skin staining a couple of times - the worst one took nearly 4 years to fade but it eventually did.

its worth it - can’t comment on how it made me feel as my main condition meant correcting the anaemia didn’t make a huge difference - but its quick and easy, you’re in and out within an hour. Do it!

I was fine for a couple of days after my infusion then very ill for a few days - sort of as ill as you could be without feeling the need to call an ambulance is the only way I can describe it. Probably the illest I’ve ever been outside of Covid. Like I was tucked up in a warm bed, shivering so badly my whole body was shaking. Couldn’t do anything at all for a few days.

But….i did then finally feel better after years and years of exhaustion so overall it was worth it!

was that from the “iron flu” that I’ve read about, or low phosphate (which I’ve also read can happen after infusions, some more commonly than others) - did they measure your phosphate before or when you were ill? Some say they should do a baseline measurement beforehand but I don’t think most places do unless you’re at higher risk.

They didn’t measure phosphate as far as I know (NHS in England). I think it was just “iron flu”, it did match the symptoms I’d been warned could happen.