10 posts Page 1 of 1
So I have been on the OMS diet since Jan 2015 & my GP has been monitoring my iron stores which are steadily declining. I have now reached a point where an iron infusion is required (can’t tolerate iron tablets).

Has anyone here had an iron infusion before? I’ve been reading that it may not be good for PwMS; is that true? How have you managed your low iron stores?

Feeling a bit torn about whether to go ahead with it or not - I feel so fatigued, get shortness of breath, dizziness etc which I know aren’t 100% MS related....
Hello Virginia,

Sorry to hear of your additional problems. It’s not as if MS isn’t challenging enough on its own already.

It might be worth your while doing a good search of the forum for previous discussions of iron deficiency and infusions. I remember forum member Blueberry writing about this issue, and - I think - going ahead with an iron infusion.

There was also a good article in the OMS newsletter a year or so ago about keeping up iron levels. Basically iron comes in heme (animal-based) and non-heme (plant-based) forms. The non-heme iron in spinach etc much less readily absorbed by the human body and in order for our bodies to make use of it we need to consume it with lots of vitamin c.

I find an easy way of doing this is to make an EVOO salad dressing with fresh lemon juice and zest and have this on the baby spinach leaf / rocket (aragula) / watercress salad I have with two of my daily meals.

Adding some seaweed into your diet might also help you a lot. I posted about seaweed earlier.

Good luck with finding a way forward.

All best wishes,

Jette
The Gut Microbiome is KEY to optimal health.
The OMS site & forum are brilliant! Thanks, everyone! :D
Your post is very similar to mine a couple of years back.
I even messaged George who replied but too late as I had infusion.
If you were in nz I’d say do not have infusion as here they make iron out of a kind of sugar now. (Cheaper ) so do find out what is made out of.
I was crook for 10 days and in bed for most of them after infusion.

I too can’t tollerate iron pills.

The iron definitely helped my energy levels afte4 a couple of weeks of feeling like crap and it stopped my hair thinning out.
But now I will do my best to avoid infusion.
I’ve chosen to have a small lean piece of wild venison every couple of months.
I also eat a lot more black beans, and sometimes have molasses.
Some of us just can’t get enough iron however hard we try to eat vegan iron rich foods.

Just a note iron infusion did not cause an attack.
Thanks for the posts Jette & Blueberry.

Blueberry, I'm interested to know why/how you felt unwell after the infusion; I've heard people should feel the effects quickly & feel much better? I'm booked in to have on the 16March & will go ahead with it. I'm just so tired & old MS symptoms are waxing and waning & I think it's because I feel so lethargic (MRI 1 month ago was stable & lesions significantly improved). Did you find the lack of iron made your symptoms worse?

Also did George reply to your post?
I’m certain had the infusion been from what they made iron out of a few years back and not this new cheaper stuff I would have been fine.
I have a friend who also had an iron infusion at the same time as me.
She has 1 a year and it was the first time she was sick as a dog too.
So it really was the new type being used in nz and it really likely where you live uses a better type of iron infusion and you will have no ill effects only good ones.

The fatigue from low iron is truely awful.
If I were you I’d go for infusion to get levels high then try to keep it from slipping too much by eating iron rich vegan foods more than you were.

George’s reply was..

Sorry for taking so long getting back, and you have probabably have had the treatment already.
Hope everything is going well for you. Be well.
George.

So no info or advice on what is best.

Btw Jette you have a remarkable memory!
All the best to you both.
Ax
Hi all -
How low are you guys talking here? My ferritin is 10. I just saw my Nero yesterday and he said that is too low. I'm taking iron supplements and tolerating them fine. None of my doctors have recommended infusions but I do want my iron up. I do feel sluggish with it so low.
Michelle, yours is very low, mine was 15 when I got infusion.
You probably know.. but it is absorbed better with vitamin C.

It definitely comtribes to fatigue and my hair thinned rapidly when I was low.

An infusion will help get level up quickly.
I’m quite surprised despite taking iron pills you are so low.

Do keep persisting about this situation with your doctor.
Good luck.
All -
This information might be helpful to others too because we eat a lot of nonheme iron foods on OMS. Green tea blocks the absorption of nonheme iron which is mainly found in a plant-based diet. My ferritin level was down to 10 but just one month after I stopped drinking green tea every day, my ferritin was 20. I'll have it check again in September and hopefully, it kept going up.
https://hemochromatosishelp.com/heme-iron-vs-non-heme-iron/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5093162/
I'll update again after my results in September.
Okay, so I just had my Ferritin rechecked and it's back down to 12. So stopping the Green Tea never made a difference. I stopped taking the iron supplements when it was at 20, hoping it would continue to go up but I guess not. So I'm going to get back on iron supplements. I do eat a rich plant-based diet but I'll have to see about my vitamin C intake.
10 posts Page 1 of 1

Who is online

Users browsing this forum: No registered users and 1 guest

cron