Iron Infusions

[KatieG75147]

Hi all, just wondering if anyone in this group has ever had an iron infusion? When I was first diagnosed with my B12 deficiency, they also found that my vitamin D was deficient and my iron was only just in normal. Vitamin D is now fine on the daily tablets, but I've been struggling for about 18 months to make much headway with my iron levels and I get really unpleasant side effects from the tablets. As my fatigue (amongst other symptoms) has never really gone away, despite me being on 4 weekly B12 injections, I do think being able to bring my iron levels up might make a difference, even if it's small. I've booked myself in for an iron infusion at a private clinic and just wondered if any other members had ever had one and, if so , their thoughts or any advice? TIA!

[Narwhal10]

Hi KatieG,

I looked at your other post to get up to speed. In the height of COVID, my ferritin was in my boots and I was diagnosed with PA. I did have a total iron panel but the only place that did a private iron infusion was 150 miles away. I simply could not have made the journey. I took the cheap and nasty prescribed 210 mg ferrous fumarate 3 times a day. Then went to Solar Gentle Iron and Spatone.

Once I could walk again, I carried Spatone with me. In the afternoons, I would become dizzy, fatigued, short of breath and my legs would give way. Then I had other investigations and the report suggested copper deficiency too. I introduced copper citrate and noted my physical response. In a week, the sitting on pavements and crawling into taxis breathless was no more. However, what works for one does not for another.

I know several women who have been on repeat prescriptions of iron supplementation for years. It is not diet related. I ask them how their stomachs are and have they had any further investigations to find out why. They just shrug.

Hope others will reply to give you their insight and experience. So, you can have a wider viewpoint.

Best wishes.

🐳

[KatieG75147 in reply to Narwhal10]

Hi Narwhal, thanks so much for sharing your story. It sounds like quite a journey you've been on and I'm so glad to hear you found something that made a difference for you. I'm lucky as I found a clinic close to home, so I can try it and hope something clicks. I'm possibly being naive, but I'm hoping that if the infusion gets my ferritin levels to a better place, I can then try and find a supplement to keep me going longer term. It's taken me 18 months to get from 15 ug/L to 24 ug/L. I've had to move to working part time and I am willing to try anything to try and get back on my feet, but I don't think I can keep going at this pace.

[Rexz]

Hi KatieG, yes I had to have 11 iron infusions. With advanced stage autoimmune gastritis/PA and achlorhydria I am no longer able to absorb iron orally. Because of the chronic inflammation we are keeping my Ferritin levels above 100 our target is 130.

I can't paste it here right now but check out my post in my profile on Iron Deficiency Without Anemia (IDWA). There are some good references/links there.

Best wishes, Rexz

[KatieG75147 in reply to Rexz]

Hi Rexz, thanks so much for your reply and for pointing me to your previous posts. It's all really helpful info!

[Jason_h123]

hi Katie,

I had one in August and it made a huge difference, not as soon as I’d hoped but within 6 weeks I began to feel much better, combined with EOD injections nearly all of the neurological issues have gone and depression feels a long way away.

Good luck with the ‘marmite’ drip, that’s what it reminded me of 😀

[KatieG75147 in reply to Jason_h123]

Hi Jason, thanks for sharing your experience and also really helpful to have an idea of timings, so I'm not disheartened if I'm not instantly buzzing!

[Orchard33]

I had a ferritin infusion two weeks ago and am beginning to feel the benefit. Early days. I see the haematoligist at the beginning of April when it will be clearer what the effect has been. I will post more then. My test levels have been bouncing along the bottom fir at least three years at 30-ish. A normal result in the primary care universe.

[KatieG75147 in reply to Orchard33]

Thanks Orchard! I'll keep an eye out for your future posts. The best levels I've managed to get is mid-20s, and I totally agree that my experience is that's all fine. Although I have found a good GP who acknowledges getting my levels up would likely help and whilst she can't really do anything for me as my levels are normal, she has supported me looking for my own solutions. From reading stories of other members, I don't think it's always the case, so I'm grateful she's open minded and practical. Good luck with your next steps!

[Suesue246]

I had one nearly 3 weeks ago. No difference in how I feel physically yet. I also have no stomach acid and was told my oral iron tablets prescribed by the g.p. wouldn't work for me.

[KatieG75147 in reply to Suesue246]

Hi Suesue, sorry to hear you haven't had any improvement yet. Fingers crossed you do get some benefit eventually.

[Fluffyfloo in reply to Suesue246]

How was it determined that you have no stomach acid? I have an upper endoscopy and colonoscopy coming up very soon. I have asked my doctor if he could test my stomach ph during this procedure, and he said they had no such test to do that in their system. He said maybe in a few research type environments they would be able to do this, is my recollection of his response.- In other words, that this testing is rather obscure. (This is in a very prominent university health system in one of the biggest cities in the United States. And its doctors are attached to an Ivy League medical school here.) So I am at a loss as to how people get a determination of no stomach acid. I have heard several people say this, the same as you have though.

[Suesue246 in reply to Fluffyfloo]

I am in the UK. I had a test which I think was called a 24 hour manometry test. It was an nhs test. I had a thin tube inserted through my nose down into my stomach. It had a monitor attached to the other end. I had to press a button every time I had symptoms for 24 hours then remove the tube. I had to return the monitor to the hospital the next day. The results were then analysed for frequency and type of reflux and how well the swallowing muscles worked. It showed I had zero stomach acid.

[Fluffyfloo in reply to Suesue246]

Thank you for your reply. I believe that I have heard of this test that you are describing and which looks for reflux.

[Loupharm]

hi yes had an infusion a year ago following total “crash” due to COVID in the august prior to that. I’m a lot better now and recommend the physician I saw privately in Cambridge. I would also recommend seeking advice on other supplements you may need from a nutritional therapist or dietitian.

Best of luck, it does take time even after an infusion (for me was 6-9 months really, though was back working - desk based- in 3 -4 months) but keep the faith and I’m sure you’ll get there.

[Suesue246 in reply to Loupharm]

This is good to hear. My infusion was also at Cambridge nearly 3 weeks ago. I so hope it helps in time.

[KatieG75147 in reply to Loupharm]

Thanks Loupharm, that's really helpful. I did look at a private clinic in Cambridge as part of my research, but sadly I live too far to make that logistically possible. I'll definitely look into options for nutritional therapy. I'm taking quite a lot and have been pondering on this for a while. Really good to know you've found it worthwhile!

[DiNL]

I had 5 infusions but now maintain my iron levels with heme iron tablets. I also have PA with AIG about heme iron is absorbed much better as it is a natural form of iron. Anyways it works for me. Good luck

[Reembow]

hi Katie,

I hope you are well!

So basically I have been ferritin deficient all my life. My level is 9 as we speak. I am trying to find away to get them up since everything I’ve tried gives me a reaction. I took an iron infusion several years ago but had a horrific reaction several days later with palpitations up the roof they thought I might be having a heart attack. I was also pregnant at the time. Be careful with iron infusions! I also get palpitations recently from my iron pills and even after eating liver so I’m not sure what to do next

[KatieG75147 in reply to Reembow]

Hi Reembow, thanks so much for sharing. Sorry you've struggled so much, but I definitely appreciate you sharing your experience. I feel a lot more aware of what to watch out for now!