Severly Anemic-11 years out

Hello,

I am 11 years out from a Duodenal Switch with a lap band added later.  My beginning weight was 401 and today I weigh 161.  Over the years I have had trouble with anemia.  I have tried everything to get my levels up eventually having to have iron infusions.  After 3 or 4 infusions over 2 years and thousands of dollars later I could not afford them any longer!  Insurance had a coding on the procedure that made my out of pocket cost ridiculous for a simple infusion.

I tried the pill form which made me sick to my stomach all day long as did the liquid.  Lastly I tried taking flinstone chewable multi with Iron and that also did not work.

My levels read:

Iron Serum 17 normal 35-155

Iron Saturation 4 Normal 15-55

Ferritin Serum 4 Normal 13-150

Anyone have success with this?  How do I get my levels up so I can regain my energy! 

If you are past the age of baby-having you may want to consider uterine ablation so you won't lose blood every month.  It doesn't alter you hormonally.  You can also switch to cast iron skillets/cookware.  Those add a little iron to everything cooked in them.  And try to eat high iron foods every day.

Next, there are dozens of iron pills on the market.  Some people like Tender Iron.  Keep trying different pills till you find one that works.  Then there are a bunch of prescription piils out there too.  Ask your doc to get some samples for you to try.

If a couple infusions holds your iron up for a year or more, you may want to consider traveling to Costa Rica for a vacation and some infusions.  Much cheaper outside the US.  You could get any dental work you needed too.

Flintstones will never work for us unless you are chewing up a handful at a time.

Spot on with the cast iron cookware!

I have a very old "family heirloom"  that leaches iron into the food very nicely.  I plan on buying an entire set of cast iron cookware as I am able.  It's expensive, but a very good investment for health's sake!

 

Also does great grilled cheese! 

I take my iron at bedtime.  Therefore any stomach upset is covered by my sleep.  All is well when I wake up in the morning.  I take a combination of carbonyl iron and proferrin iron along with Vitamin C.  Seems to work well and doesn't cause any gastro distress.  I just have to stay away from ferrous sulfate.  It is SO wrong for me. Maybe you should change your dosage time and make sure you are taking the kinds of iron that don't cause so many problems.

 

 

Haven't tried yet because the Proferrin ES is pricy, but tender iron and Vitamin C is what I was told. 

 

I need to try it as well....the Proferrin is suppose to really give to Tender Iron the push to get in your system real good.

 

If you just use the Tender Iron its will slight go up, but it is not enough, the combination of all three is suppose to be awesome.

Keep an eye on it  because it might shock you, how much it goes u*****t, but definitely get tested 3 months later.

I haven't read before that combining carbonyl iron and proferrin iron would increase their absorbency. I would like to know more about this.

Gail, I'm certainly not an expert....but contact Majormom, she does the daily vita bites or Vitalady.

 

At your levels, I would say you need infusions immediately. Dont waste any more time any money on supplements, high iron foods, cooking, etc. You can try those things later, but you are in a position where trying is not applicable. You have to see a hematologist and get your levels up.

A hematologist can perform iron absorption tests to see if you absorb heme or carbonyl iron. The only way to truely know is thru the test. My hema told me not to waste my money until I had the absorption test. I absorbed neither. I will rely on infusions, always. This is very very common among DSers.

I dont recall hearing anyone ever complain of the costs. It shouldnt be a problem getting insurance to cover. Maybe you need to work with your hema and ins company to find the right code? There are others who know more about the insurance side of things.

I spoke to my gyn last week about an ablation. It will help, but how much is hard to tell. If you are a heavy bleeder (which my gyn described as "quarter size clots"), then an ablation would be very helpful. If you have light periods, it wont help as much. However, light or heavy, it WILL help.

I would suggest getting advice from the vets on the other site as well. I think you would be told to run, not walk to the hematologist. You need to take care of it immediately. They could help you with insurance as well.

Thank you all for your suggestions.  Fullhousemom is right, I need to quit trying things and get an infusion.  I am not sure why I have such of a high out of pocket.  Each infusion cost me around $2,000.  I meet my deductible and still have a 20% out of pocket.  Here in Arizona (I am not sure how insurance works or areas it covers) the coding considers it inpatient so it drives the out of pocket price on my end.  We just had a renewal with our Health Insurance at the beginning of the year, I guess it is time to get back on the phone and start asking questions again, maybe things have changed. 

I have looked into the "Stop the Flow" procedure.  The only thing that made me step back was that they have to put you under anesthesia.  Oh yeah did I mention there is a high out of pocket for that too!  lol  I have had 4 major surgeries, I just hate pressing my luck when I do not have to.  I am turning 47 next month so maybe I will start Menopause soon.  

I work 45-55 hours a week, have a 5 year old and battle Fibromyalgia and Iron Deficient Anemia....  I want a nap!

My input is just a bit different. I'd suggest getting one last infusion, even if your copay is hideous. Still cheaper than being disabled or worse.

Then begin to try the orals. I have 100 cm common channel, and the 300mg of Tender iron keeps my level roughly, serum iron (35-170) at 90 or so and ferritin, (whose range is so elastic it's hard to state, but let's go with 20-350), my stable is between 200-300 and has been for years. That was on the 300mg of Tender Iron alone.

I added Proferrin ES before bed as an experiment to see if I could influence my hemolytic disorder, BUT since it's genetic (killed my dad), I've had nearly 10 yrs to stop it "with a pill" and I give up.

However, the other levels have increased just a bit. But the heme seems to kinda "know" where it needs to go. Savings account (ferritin) or checking account (serum iron). I used to suggest the polysacharride iron + Tender Iron and for many, that is the charm. Now, since so many prefer the heme, that would be the 2nd guess, after Tender iron. Cheaper than Proferrin, and may help if your bowels are slightly loose.

The iron absorption test is usually done with ferrous sulfate. I started seeing my hema since my dad got sick in 2003, so we've had many words about iron types and determining if one should try orals. The default for most seems to be that if you can't get it from your food, don't even bother with orals. But that doesn't take into account malabsorption.

My friend had a ferritin of 9 pre-op, but nobody knew or cared what that meant. She was doing weekly shots, Mega needle in the glut. She learned to z-track them so she didn't have the yellow bruises on her gluts.

Just as a good sport, she took 150mg of Tender + 150mg poly. Eventually, she went to 2 shots per month, Then 3, then monthly. When she finally stopped, her serum iron was appx 100, ferritin was 437. I remember because it had been done. 9 to 437. Took 3 years, but her hema had insisted it could not b e done. Perhaps the shots kept her stable and the orals were allowed to build. She's been off shots nearly 10 yrs now.

I think it CAN be done, but much harder to build with no foundation. So, if you can get a really big whopper of an infusion, that might buy you some time to experiment with the orals, Tender being the cheapest way to start. And it's odd, kinda builds backward, ferritin first. Some docs will do shots and/or let you do your own shots, so then it's ,more affordable than the infusions, but being a glut, you need to find someone to shoot you and teach them to z-track.

The problem with life-long infusions are 2 serius ones. The cost or loss of insurance AND suddenly becoming allergic. I talked to my hema about the concept and he was horrified, having just recently nearly lost somone who'd been on infusions for a year or so. Anaphalactic shock. God thing they were just across from the hospital.

I was iron anemic my whole life. Until my WLS, and daily iron became part of my life.

My issues with the hema are genetic. I make lousy cells with a short life span and I've been short on platelets for more than 30 yrs. Ironic that I can make iron by the bucket load, but no dang little trucks to haul it around, huh?