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Not able to tolerate Iron supplement

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Avena

Senior Member
Messages
138
Long story short: tests show low Ferritin and low Iron (for years). I am not able to tolerate Iron supplements.

I have tried several types, all oral, but I have never been able to stay on any of them without heavy increase in autoimmune symptoms. (Increased joint pain/stiffness, neuro-symptoms, daily migraines.)

I have severe ME, and I have kept on trying as I am curious of how my body would function with normal levels. But I am about to give up oral supplements for good now. A crash after a few days trial can set me back for weeks and months. It is simply not worth it.

My question: do you think injections would be tolerated better? Maybe an injection could be easier for a severely ill body to take advantage of? And maybe it could get my levels up faster and give my body longer intervals of rest between the setbacks, instead of a daily exposure.

Please feel free to comment.
 
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barbc56

Senior Member
Messages
3,657
I'm not sure about injections but I had the same problem and possibly not absorbing iron because of IBS.

I was referred to a hematologist and got an iron infusion which lasted eight hours. That was over four years ago and my ferritin levels have remained normal. Make sure your doctor knows that optimal ferritin levels are different depending on your health condition. I have RLS and your ferritin level needs to be higher.

I was able to get off medication for RLS after having this done. However as far as me/cfs/fm symptoms, I didn't see an improvement.

Good luck.

Barb
 
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Avena

Senior Member
Messages
138
Thank you Barb. Both a Hematologist consult and an 8 Hour infusion is impossible for me (bedridden/never out of the house).

Interesting to read about your RLS though. I am sure getting rid of that would help both sleep and rest. Did you only have this one infusion?
 
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barbc56

Senior Member
Messages
3,657
Yes, only one infusion.

Can you get some kind of home medical services? You are also given benadryl with the iron, so I slept most of the time but you do have to have supervision by a medical professional.

I'm not sure where you live or the type of health insurance you have but coincidentally, I received a letter from my health insurance today which expands the type of home medical services you can get. Even routine physicals.

As I said above, I have no idea about the pros and cons of infusion vs shots.

Keep us posted.
Barb
 
A

Avena

Senior Member
Messages
138
Barb: that insurance sounds fantastic! I live in a different Country/different system.

CFS_for_19_years: thank you, great reminder! I used Floradix in my teens and liked it, but have never tried it during my years with ME. I have recently noticed that my body is much better at taking advantage of liquids than tablets (folate and vit-D), so I might need less for effect here as well. That might be helpful for tolerance as well. Will try. Thank you.
 
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