When Are Iron Infusions Justified?

[Happy DSr]

I am meeting with my Hematologist this week. I would like to be armed with some specific information.

Question - if you have iron infusions, what is the threshold that your Hemo uses to determine it is time for them. (In the past I have seen posts that certain Hemos will infuse as soon as ferritin gets to XX level. I can't find those posts to get the number and not even sure what the units and range are if I did find them.)

Question - are there any studies/literature specific to DS iron absorption and infusions that would support this discussion? I have seen so much anecdotal testimonials for their success, but the science and facts will help me to better make my case

Note that I am in Canada, so units and ranges may be different that those you use, so I need to be clear with my numbers.

Ferritin
my lab's reference range is 10 to 291 UG/L (micrograms per litre)
my results: from the high 200s and 300s in my first couple of years post op, I am now down in the 20's. But still technically "in range"

Iron
my lab's reference range is 11 to 27 umol/L (micromoles per litre)
my results: these have bounced around, but for the past several years, I have been "in range". My last results were 18 which isn't bad.

But the Ferritin is the stores and I am concerned that I am almost "out of stock". Somehow I am managing to get enough iron absorbed to stay in range, but the stores have depleted drastically. I was supplementing with 3 Proferrin daily, and have switched recently to FeraMax 150. I will get my most recent labs when I see the Hemo and can see if they have helped.

I raised the issue of infusions briefly at an earlier appointment, and her immediate response was that infusions came with a lot of risk, so they were not her first choice. I would like to know at what point the numbers make it a choice worth making, so I can encourage her in this thinking

thanks in advance

Ann

 

[brooklyngirl]

I got the same response from the hematologist I saw after my last set of labs, that she didn't want to risk the potential side effects when my numbers weren't "too low". So I'd like to know some more info on this too.

 

[Spiky Bugger]

I'm not much help...I pretty much demand them. Well... I ask if is there is any rational reason to believe that iron in a pill would be better absorbed than iron in a ribeye steak. That's when my doctors decide that, since I don't absorb iron from food and I take so many other supplements that timing oral iron can become problematic, that there's no point in oral iron supplements...AND...so far, my hematologists are not big fans of the injections.

I get the infusions maybe every 6-10 months. Usually a series of four to six, depending on the doctor. (Today was #3 of 4 in this series.)

It makes a huge difference in my energy level...I hope you can find doctors who can be convinced that living on the bottom end of normal with ZERO chance of recovery without infusions is just not the way to go. If you continue to trend downward, why in the world would you have to become almost unable to move in order to repair the problem?!? Why not observe, see that it is heading for disaster and stop it while it's still a SMALL problem?

 

[Happy DSr]

no luck in moving to infusions.....yet

My iron numbers are still in range while ferritin is low. My hemo wants to give it another few months with the FeraMAX 150 before considering any other action.So now I hope it tanks so I can get some action

 

[Sheanie]

I've never heard of a hematologist who thinks that iron infusions are dangerous. That's bullshit. So now what are you waiting for, your ferritin to totally tank? My hematologist infuses when my ferritin gets down to 50, **OR** I become symptomatic, whichever happens first. Are you symptomatic? Go in with the laundry list of symptoms, and tell this "hematologist" how many you NOW have. It sounds like maybe you need to be demanding and forceful, let your beloved Inner Bitch out. If my ferritin was where yours is, I'd be way past symptomatic and into deep depression.

Now on the "infusions". Are we talking the old-fashioned, butt injections? The kind where they have to use the "Z" injection technique or you have a permanent black spot where the iron stains your body? Because as I understand those, they can be dangerous. But if you go to a recognized infusion laboratory, where they also perform chemotherapy treatments, you get a totally different treatment. Venofer in a diluted IV solution, run slowly over several hours, while under the close professional observation of a registered nurse, carries very low risk. You are observed closely (chairside) during the initial few minutes for a reaction. You are in a setting where a doctor can be summoned to treat any adverse reaction. In THAT setting, iron infusions are safe and low risk. In office, "Z" injection in the gluteus muscle is, in comparison, risky.

If you are in Michigan near me, I go to Varadarajan. I highly recommend him.

 

[brooklyngirl]

This is good info I need to write down to bring to my next appt.

 

[Happy DSr]

I've never heard of a hematologist who thinks that iron infusions are dangerous. That's bullshit. So now what are you waiting for, your ferritin to totally tank? My hematologist infuses when my ferritin gets down to 50, **OR** I become symptomatic, whichever happens first. Are you symptomatic? Go in with the laundry list of symptoms, and tell this "hematologist" how many you NOW have. It sounds like maybe you need to be demanding and forceful, let your beloved Inner Bitch out. If my ferritin was where yours is, I'd be way past symptomatic and into deep depression.

Now on the "infusions". Are we talking the old-fashioned, butt injections? The kind where they have to use the "Z" injection technique or you have a permanent black spot where the iron stains your body? Because as I understand those, they can be dangerous. But if you go to a recognized infusion laboratory, where they also perform chemotherapy treatments, you get a totally different treatment. Venofer in a diluted IV solution, run slowly over several hours, while under the close professional observation of a registered nurse, carries very low risk. You are observed closely (chairside) during the initial few minutes for a reaction. You are in a setting where a doctor can be summoned to treat any adverse reaction. In THAT setting, iron infusions are safe and low risk. In office, "Z" injection in the gluteus muscle is, in comparison, risky.

If you are in Michigan near me, I go to Varadarajan. I highly recommend him.

thank you for the advice. I did review my symptoms with her, but I was not especially forceful...I am a typical Canadian that way. My doctor is young and is trying very hard to pin down the answers to some hemolysis problems I am having, so iron/ferritin is not her primary concern. I think she wants to clear that up first. But I will be having additional ferritin and iron testing blood work done over the next few months and will return armed with both the numbers and the "inner bitch" to forcefully make my case

Iron injections are crap. They hurt, stain and aren't very effective. My Hemo agrees that this is NOT the way to go

Iron infusions are a possible solution, if I can show her we have made an honest attempt at the oral iron supplementation. It turns out she has one other bariatric patient, but I think she is a RNY. So I think it is time to educate the doc. I left her with some articles I found

and sorry, Michigan is a little far for infusions and wouldn't be covered by Ontario's health care program. Hopefully I can get this addressed at my next appointment

thank you so much for the input

 

[Sheanie]

@Happy DSr , I think your ONLY solution with ferritin THAT low is iron infusions. At a certain point, taking oral iron is useless. Once you get your infusions, you can delay the next set of iron infusions with oral iron. But when your ferritin is this low, you NEED IRON INFUSIONS, period.

 

[jjordan8130]

This may be a really stupid question BUT:

Is it an option to just not take oral iron and request infusions instead??? (I haven't had any issues so far and my first set of labs is tomorrow) I really hate taking iron. I've had a terrible time with constipation. I just made a post on taking Tender Iron vs an iron prescription. But I've often wondered if I could just do infusions periodically instead.

 

[Sheanie]

@jjordan8130 , lots of us stop taking oral iron after we start infusions. In my case, my (very young) hematologist said to keep taking my Proferrin twice daily after my infusions. His reasoning was that perhaps we could delay my next set of infusions this way. Since I have no adverse reactions to Proferrin like I do with other irons (I get the opposite problem: diarrhea from iron), I have done as he said. I have yet to tank low enough for my second set of infusions. I'm getting there, but my ferritin was 185 at last labs, so until I'm symptomatic **OR** my ferritin dips to 50, he won't infuse me again.

For me, continuing with the oral iron (Proferrin Forte by prescription) isn't a problem, and it's kept my ferritin up for almost two years now between infusions.

So, to answer your question, Yes, you certainly can stop taking oral iron if you wish. But before you do that, price your co-pay on iron infusions. Mine is quite steep, and is one reason I don't have a problem paying for Proferrin in the interim.

 

[Elizabeth N.]

I am fortunate that my insurance is really good about covering infusions when they're properly coded. I think the doc might have added in something about inability to tolerate oral iron....Or maybe I've just been lucky and insurance hasn't second guessed whatever codes he's used. I've gotten my infusions while not yet "technically" in anemia range, but close.

Every oral iron I've tried has torn up my guts something fierce, so I gave up.

 

[Spiky Bugger]

My hemo docs both said that it doesn't matter if iron goes in via a food or a supplement...in my case, it just doesn't absorb well enough.