Intravenous Iron?

[+ FreshFluff]

I was hoping to avoid this, but it looks like I have no choice. Despite taking tons of the best oral iron available plus Rx medication to address the cause of the low iron, my stored iron (ferritin) levels are still in the single digits. The symptoms of that are really showing now. The hematologist I saw agreed to use the gentlest IV iron available, Venofer, at a very low starting dose. Nevertheless, I'm apprehensive about the potential side effects, particularly an allergic reaction or extravasation aka the iron escaping the vein and leaving a huge permanent brown tattoo.

 

Since you guys are a seasoned bunch, I wanted to ask if you know anyone who has had this done and whether they had any problems.

[+ sniper]

I don't know as I have the opposite issue - too much iron. Are you taking Vitamin C supplements and cooking all your red meat in a cast iron pan? Those can get more iron in you.

[+ FreshFluff]

Unfortunately, I’m well past the point where food can do much. I’ve been taking 3 times the maximum dose of iron supplements since January. The active ingredient is animal-sourced iron, which is very well absorbed.

 

I mostly eat out, but I now eat red meat several times a week. As for Vit C, I've tried it briefly, it appears not to affect absorption of this type of iron. I think I'll give it another try to see if it can increase absorption of iron from food. Thanks for the suggestion, sniper.

 

Sorry about the hemochromatosis. Are you giving blood to try to get the levels down?

Edited August 2, 2018 by FreshFluff

[510guy]

I

I don't know as I have the opposite issue - too much iron. Are you taking Vitamin C supplements and cooking all your red meat in a cast iron pan? Those can get more iron in you.

I had the same issue of having iron overload. I used to take out a pint of blood every two weeks and doctors said I would probably need to do this the rest of my life but after two years my iron level went back to normal and that was over 10 years ago

[+ Gar1eth]

I'm sorry about you needing the iron. If you consider the number of people who receive it in intravenous nutrition, I'm thinking the incidence of allergic reactions is fairly low. Maybe some of the physicians on here could speak in reference to patients they've had if anyone has had a bad reaction.

 

Gman

[+ FreshFluff]

I

 

I had the same issue of having iron overload. I used to take out a pint of blood every two weeks and doctors said I would probably need to do this the rest of my life but after two years my iron level went back to normal and that was over 10 years ago

 

510guy, I'm glad to hear your levels have stayed normal for that long. That's one thing you don't have to worry about anymore.

[+ FreshFluff]

I’m going to have to bite the bullet on this and hope for the best. I’m scared but the alternative is unacceptable. I did the same with the egg freezing and ended up regretting not having done it earlier.

 

I just met someone who had it done twice. No side effects, she said.

[+ Funguy]

Sorry about all of this.

I think we had a discussion a while back about diagnosing but we did not get into treatment. If you have tried the other sources then this is what you are left with. I do have a friend who had multiple iv iron infusions and she did fine, just slept during the procedure. No pain, no reactions.

 

By the way, an anectdote - she had an asymptomatic hiatus hernia (esophagus to stomach) which was causing a very slow, constant, undetectable loss of blood. They did find the hernia with the usual studies and told her it was small and since she was asymptomatic nothing needed to be done. But she was getting more and more anemic, needed the iv iron, and so she convinced the surgeon to repair it and, lo and behold, her bleeding stopped and she was fine ever since!

[+ FreshFluff]

Thanks, funguy. As for other ways of solving the problem, I've tried it all except for hormonal stuff. (I use a new non-hormonal drug popular in Europe.) Eventually, I will likely have surgery but no one will do that with my current iron levels anyway.

 

That's interesting about your friend. I'm glad she was able to solve the problem. I hope that I don't have another issue (besides the primary one) that is causing this but I may take a Cologuard just in case.

 

How are things with you?

[+ FreshFluff]

I did it yesterday. I feel all emotional now because I can't tell how the injection site is going to turn out. The doctor is very smart and willing to listen, but the nurses—while friendly—weren't that attentive or well trained. They totally butchered another lady in the infusion room, pricking her 7 or 8 times and finally hooking the IV to her big toe. When she got to me, I had to insist that she stop moving the needle around and try again on a new site. Anway, now IV site is pink and tender, which alarms me. I'm afraid that the iron infiltrated and I'll end up with a huge brown splotch on my arm. I won't know until a few weeks from now. Luckily, it's on the underside of my forearm but that's still not great dependin

 

Vent ahead: I have no right to feel bitter, but I do. Anemia isn't a huge problem, and I'm lucky that's all I have (besides insomnia and the rest). I hate that my well being depends on nurses and on my ability to tear them away from their phones to check to my IV. I'm so alone already and I suffer from bad insomnia (despite sleep meds). And now this bs on top of it. Lots of people my age have no medical issues at all.

[+ Gar1eth]

I did it yesterday. I feel all emotional now because I can't tell how the injection site is going to turn out. The doctor is very smart and willing to listen, but the nurses—while friendly—weren't that attentive or well trained. They totally butchered another lady in the infusion room, pricking her 7 or 8 times and finally hooking the IV to her big toe. When she got to me, I had to insist that she stop moving the needle around and try again on a new site. Anway, now IV site is pink and tender, which alarms me. I'm afraid that the iron infiltrated and I'll end up with a huge brown splotch on my arm. I won't know until a few weeks from now. Luckily, it's on the underside of my forearm but that's still not great dependin

 

Vent ahead: I have no right to feel bitter, but I do. Anemia isn't a huge problem, and I'm lucky that's all I have (besides insomnia and the rest). I hate that my well being depends on nurses and on my ability to tear them away from their phones to check to my IV. I'm so alone already and I suffer from bad insomnia (despite sleep meds). And now this bs on top of it. Lots of people my age have no medical issues at all.

 

 

FF, I'm sorry about the IV. I hope it will help if I tell you that IV's can become a bit red and irritated even if the drug stays in the vein. IV's aren't natural. And so they can irritate the vein even if saline is running thru it. So there is every chance that the iron didn't extravasate outside the vein. I am sorry that it is hurting you. Try putting a cold compress on the site. If it remains red or seems to be getting redder/spreading, then you need to call the doctor.

 

Gman

[+ FreshFluff]

I went to see the doctor today because of course I did. He thinks it's just a bruise. He said he couldn't feel a cord that would suggest infiltration. He suggested a cold compress too.Time will tell, I guess. It's not as if I had a choice if I want to keep my hair.