Need an iron primer please

Could someone please talk about iron? 
Specifically:
which are the iron related labs?  What ranges should we shoot for?
What are the iron supplement options?  Is there sort of a list of what to try in any order?  Should you start with carbonyl iron and then move to other forms before you try Proferrin?
When do you know you need infusions?  Should you just skip all the supplements and go straight to infusions?  When do you need a hematologist?  Can a pcp order iron infusions?  What is involved in iron infusions?  What are the risks?

And any other iron related issues that I don't even know enough to ask about.

So far I am doing okay on carbonyl iron but I know I'm not the only one who doesn't understand iron and the DS so I am hoping I won't be the only one to benefit from answers to these questions.

Thanks!!

~Becky

I'm going to take a stab at answering...but I don't have answers to all your questions.

Iron related labs:  Hemoglobin, Hematocrit, Iron, Serum/Ferritin/UIBC/TIBC/% Saturation
Hemoglobin: 12+
Hematocrit: 356+
Goals:  Iron, Serum:  80-100
Ferritin:  200-300

Lots of supplement options--you can try anything but the "slow" formulations.  It seems to be YMMV with any of the options.  I think most people start on carbonyl because it's cheap and if it works, great.  Many use it in combo with polysaccharide iron with good success.  Again, cheap combo.  I progressed from carbonyl (tender iron) to polysaccharide to proferrin to infusions.  Couldn't use carbonyl because it constipated me terribly, even with slowly trying to up it.  Polysaccaride didn't bother me, but my iron didn't move (very low) and Proferrin (2, split in half) actual caused my iron to drop.  Proferrin is pricey so I decided to stop trying to figure it out and get infusions (iron was at 54, Ferritin at 5, Hemoglobin at 11.7).

Since my ferritin was at 5 and nothing I took made it budge, I made the call (in consultation with my surgeon) to see a hemotologist.  However, your PCP can order infusions. 

I get Ferrlicit infusions, one time a week for 90 minutes for 4-6 weeks.  I had my first set (6 weeks) in September, got my Ferritin to 25 and just finished my second (4 weeks).  Hopefully this wil get my Ferritin and Hemoglobin (my hemotologist key indicators) into respectable ranges.

Apparently, Ferrlicit carries the lowest risk of adverse reactions (allergic reactions to the iron), but it can still cause rash, hives, difficulty breathing, anaphalatic shock, etc. if you're sensitive.  (I'm not).  I've had no problems with getting my infusions.

There are several other options--large doses where you don't have to repeated;y go back--one 8 hour day, etc.  However, my hemotologist doesn't like these because the risk of adverse reaction rises incrementally with the dose.  Some people have to have steroids and benadryl administered prior to the infusion (I know Julie here has major issues with infusions) to prevent reactions. 

We'll see where my ferritin is at this week to determine my rate of loss, so as to approximate how often I'll likely have to do this.  I'm also getting an ablation this week to help with blood loss (oh, please work!) and hopefully that'll prolong things as well.  As much as I enjoy "me" time weekly every few months, it is a bit of a hassle.

Interesting side note and I haven't confirmed any relation yet, but once I got my iron semi-straight (or at least moving in the right direction), my D shot up and my PTH plummeted.  Coincidence?  I don't know, but it's all working the way it should be so I'm not messing with the plan.

Ferritin (ng/mL)	12-156	90	9	13
Folate (ng/mL)	>1.9	9.1	15.1	> 24
GFR	>90	>60
Globulin (g/dL)	2.3-3.5	2.4	2.3
HDL (mg/dL)	>59	46	38	39
Hematocrit (%)	37-48	31	33.5	38.8
Hemoglobin (g/dL)	12.0-16	9.3	10.2	13.1
INR	1.2
Iron (ug/dL)	60-160	25.2	23.5	125

Great information!

So here are my labs...for about a year after the birth of my son my iron was in the tank...literally and all my labs evidenced that. For the last year+ I have been taking 4 iron/day. My iron is right where it needs to be but I have noticed that my ferritin hasn't moved. My PCP didn't say anything about this but it has worried me... that is my iron reserves right?  (labs are above...first column of numbers is the reference range on the lab results).

Should I be concerned?

OMG, I about freaked out when I saw the original post as I could only see your first result column--geez you were really low.  

From what I've read/heard, you may have to add in a different type of iron to get that ferritin moving.  What are you taking now?  And yes, ferritin is like a "savings" account.

OK, I could only see the first column, so you were saying iron at 25 is ok? LOL. NOW I can see all the columns. Whew.

My order of preference is carbonyl.

cheap, adjustable, low side effects for about 98% of takers. Can't OD in this form of iron, and it is what it says it is. Since it's not iron salts, the mg quoted is the elemental iron. Seems, anecdotally, to build ferritin before the actual iron.

Don and I have used this form since the 90's. Our first ferritin draws ever were at 4/5 yrs post op, respectively, so 1999. I was at 800, he was at 600. This iron only. Reluctantly, we stopped taking any iron and watched our ferritin fall about 100 pts per year, with the iron holding steady.

Once the ferritin got to about 300, we added the iron back in but didn't know how to dose. So, it continued to fall until we reached the dose we "left" in 1999. 300mg elemental. Our irons both went back to around 90, and ferritin 200-300.

Oddly tho Don has been the injured one, 2011 is my year to hang out at doc offices. My ferritin was 502 last wk. Fortunately, I saw my hema and we both know which kind of inflammation is attacking me, so I didn't have to peel him off the ceiling.

OK, moving aloneg The poly is the highest OTC dose, and again is not an iron salt, so the 150mg is elemental iron. It is the generic for Niferex. The rx forms are Niferex Forte or Gold. Tne iron is the same, but they include a few more bells and whistles, like folic at rx strength.

If I take one, I will never poop again. Don uses them for that very purpose. He stopped taking all rx meds for the big D, which was his lifetime, not just post-op. His iron levels didn't change substantially with the addition of 2 of these (300 elemental) to his 300mg carbonyl. Odd?

For some people, the stuff is magic and shoots them right to the top. It USED to be my second choice.

NOW, Proferrin ES is my 2nd choice and the only hesitancy is due to the price. I'm still figuring out the dosing because at only 12mg, it's not a direct mg for mg cross over. It is heme iron, does not need or want vit C and isn't as picky about what you take near it. I added it in 2008. I hemolyze*. So, while I have fabulous iron and ferritin, my H&H were bad. Oddly, it fixed only that, leaving iron and ferritin where they've been for years.

*hemolytic anemia has to do with cell turn over and is not nutritional in nature

Over the years, we used the various amino acid chelates: glycinate, bisglycinate and trisglycinate. We had zero success, and that "we" means many of us who tried them.

While ferrous fumarate is what the ASMBS is saying today, most medical people progress thru the irons thus:
ferrous sulfate (bzzzt, don't do it)
ferrous fumarate
ferrous gluconate

So, the Fe fumarate is merely the 2nd choice after finding that fe sulfate doesn't work. To us here in these parts, this rewound the clock back to about 1995, since we found all this back then. We now wait while the wheel is being rediscovered.

The ferrous irons are measured in iron salts, so most will say "325" or "324". You have to flip the container over and hunt down "elemental iron" to see exactly what you are getting.

I'm not a huge fan of ferrous irons because they are more likely to upset people, either tummy area or on the outgo (or non outgo, as the case may be).

Since we have these ittby bitty common channels, people with our iron levels are kinda rare. EXCEPT for the clump of us that went thru the "iron discovery phases" together. I send gobs of ppl to my hema. He still doesn't understand how I hold these levels while ppl with less radical surgeries are on infusions.

Some ppl prefer infusions, but I'd hate to base my life on that when they are spendy and so many people have negative reactions to them. Something to be considered, before embarking on a life time of expecting iron by arm vs pill is insurance. I know our insurance changed in Oct. We didn't have a choice. The plan we had ceased to exist. If I was scheduled for any regular procedure like this, I'd now be picking up a larger % of the tab.

I should reference the Ferrets liquid iron here. It is basically liquid heme iron. During Don's time** (most of 4 months) on the feeding tube, I gave him one serving per day. Again, how much do you dose this stuff? After the 4 months with no oral intake, the only thing that dropped at all was his serum iron, from a "fabulous" of about 100 to a "mighty fine" of 66. Since I didn't remember the liquid until just before the tube was removed, that's a mighty fine recovery from several months of none.

** Don's time on feeding tube due to broken neck, nothing to do with his WLS



Why do you need iron if you are say, for example, female and over 40? Or male at all? Because iron is absorbed in the duodenum. I realize all you guys have varying amount of one, where we have none (in use), but that thing was designed to be 12-18" and even if you have as much as say, 4", you still DO NOT HAVE many inches, in use.

To my eye, once you have had any kind of bypass, what went on below the waist is moot. It's what does NOT happen after the stomach that is the great leveler.

 Thanks so much Michelle!

I take 65mg elemental in the form of ferrous sulphate. 

I will start taking carbonyl. I gotta get my ferritin in shape. 

Great information!

I don't think switching to 65 or so will do it. I think maybe thinking in terms of 300mg elemental might be more realistic. Then shopping through the iron types.

Just don't get backed into a corner with too little, too late. Then you started losing choices.

I hate losing choices.

 sorry! Should have clarified...I currently take 4 of these a day so am getting about 260mg/day. 

Ok, right dose, wrong iron

getting closer!

We were on 260 back in the day, but the dose per pill changed, so we ended up at 300. They usta be 65mg before 1997. There was a big change in iron rules then, and most irons just vanished from the shelves. poof. Anything over 29mg had to be blister packed. Anything under 29mg could be in a bottle, which is when we ran thru the glycinate family.

Then, we were able to get the carbonyl in 25's. But it was off/on for the next 3-4 yrs and I finally had them made so I'd have a reliable supply. I can't be messing with this stuff. I see what happens when the iron bites the dust! I don't want that!

Not that you needed the last 15 ys history of OTC irons, but I said 300, then said 260 was the same. Well, CLOSE ENOUGH

I did mention my surgeon told me I could get my iron that way since I was having so much trouble with pills. Since posting that here I have read several people mention how they do the same. I was actually surprised I would have to supplement it at all being post penopausal and eating a lot of beef. I guess I wont know for sure until my first labs.