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!

The phosphate complications sound quite worrying when they happen, but it seems rarer with the new types of infusion (as do the allergic reactions). I keep reminding myself of that, in case I get approved!

the iron flu I could deal with, as it’s temporary, though it seems not everyone gets that either.

I don’t think they do any blood tests on the day of the infusion at the hospital near me, not phosphate and no further checking of Hb, although that might depend on how long the wait is - I think the blood tests should be within 8 weeks of the infusion, but given nhs wait times, I imagine it might be longer, but hopefully they don’t they redo the tests before they decide whether to offer infusion or not.

I had one in January due to low ferritin, and ferritin failing to rise for over a year on iron supplements. I had a headache the next day, but that was it! It has definitely improved things for me overall. My levels shot up to 145. They are now 80, so falling, but still good. Interestingly, I used to suffer badly from recurrent UTIs, but since having my iron infusion, I haven’t had a single one. I am convinced the infusion boosted my immunity in terms of the UTIs, as I hadn’t changed anything else!

I had one in Jan when my ferritin was 10. It changed my life! My ferritin is now nearly 200.

However you should also check B12 and folate levels. The three work together so if you’re low in one you’re likely low in the others.

Also have a coeliac test as that can cause poor iron absorption.

I saw Dr Andrew Klein who is a specialist in iron and B12, he was brilliant.

I’ve had four infusions - they’re great. No problems. You’ll feel amazing afterwards.

@BlondeBelle Ive had several iron infusions and one blood transfusion due to low ferritin, was 3 at its lowest, and I felt like you described. I was also incredibly out of breath even doing minor things. The infusion helped within the first week, and with the first one I don't remember any side effects. The ones after, however, I woke up in the night having panic attacks which, after speaking to the infusion team, they said was a common side effect.
But, they helped me much more than any iron tablets ever did with much less ill effects.

How quickly did those of you who had infusions start feeling better?
If you were menopausal, did you have to have colonoscopy or other camera tests first/as well (if you had it on the NHS)?
Did you also have a blood count on the day to check your Hb levels, as I know some of the infusions determine the dose by a combination of your weight and Hb level, and I don’t know whether a test four to six weeks earlier will count.

I had new blood tests on the day. I felt better within a week. I didn’t have to have a colonoscopy to get it done.

I’ve been having regular infusions for the past 8 years (twice a year) no issues.

I've had a few done, during the last one I kept getting discomfort and pain in my arm but the nurse was very attentive and every time it happened she stopped the drip and checked the infusion area to make sure there were no issues. She slowed down the rate of infusion which helped. No staining any time.

Thank you. I’m hoping they’ll accept the referral for mine without colonoscopy but not sure because of my age. (NHS). Interesting that they repeated the blood tests on the day - was that just to get baseline values, or did they wait for the results and then decide the amount of iron based on them? Great news that you started noticing a difference within a week, as I’ve read such varying reports! Now if only the waiting list wasn’t likely to be months…

How have you got on @BlondeBelle? Did you have it yet? I’ve now been referred, which is good, but a 3-4 month wait, so a long time to get nervous about it!

It was to get the dose right, I think?

Fingers crossed you get it soon!

I heard the reports of feeling incredible after an iron infusion but I didn't feel that way after mine.

Thanks. I didn’t know they could do a blood test on the day and get the results back that fast to decide the dose. I’m booked for three months from now so presumably will need a repeat test at some point. I am going to try to get on a cancellation list too.

I did have a long day of waiting at the hospital…but worth it to get it! Previous times I haven’t had same day blood tests, they took recent readings.

I had it when ferritin was 3. I would definitely have one again. It has made a huge difference and I don’t remember any negative side effects. Even if I had, I’d take a blotch on my arm over feeling so unutterably dreadful anyway!!

That’s great to read, thank you!

Having it Tuesday next week 🙏

How frightening for you, so pleased you are on the mend and feeling better ❤️

We seem to get ignored so much - I by chance saw a different Dr this time and he is amazing!

Thank you - am looking forward to feeling brighter!

So pleased you’re feeling so great, am hoping I do too!

I have felt like this is normal me for so long, we seem to plod on don’t we!

I’ve read this too!

I’ve started seeing a new Dr who has been amazing - it transpires when I requested a blood test previously due to exhaustion (18ish months ago) my bloods were the same as now and nothing was actioned.

No consistency!

Thank you for your reply and am glad you’re feeling better.

Can I ask if anything was done differently the time you had staining?

I’m booked in next week and am nervous!

I got tested in 2024 which came back negative but don’t recall being advised to increase my wheat intake.

Am increasing it now for a test in a few weeks.

That’s great to hear, thank you!

I had one. Absolutely fine. Felt a bit under the weather for a day or two after, but still able to go about my business as usual. No staining (that's statistically not that common).

My consultant advised me to make sure I'd eaten well before I went and to be well hydrated.

It really helped me regain my energy.