Didn't get infusion

[Charris]

I went to get my iron infusion today. They got my blood work back saying all my levels were in range. According to my weekly test results I was told I was anemic. Because the rbc, Hemoglobin and hematocrit are low the said I was anemic.

My blood work for the infusion said everything was in range. So whats going on?

 

[Munchkin]

How do you function with those nails? But they are very cool. I think you should post a picture of them. If I had those I would be injuring myself constantly.

What they tested looks good! Be happy!

 

[Charris]

Lol @Munchkin I do worse, without them. Ive had long nails for 24 years.

 

[Munchkin]

OMG... So my nails would look great but the rest of me would be covered with puncture wounds and bandages! Those are art!

 

[aaa]

Gotta be honest, I had no idea those were fingernails, lol.

 

[DianaCox]

Coincidentally, I'm typing this from my hema's office. My ferritin was 28 and on a downward slope, crit is 41.3, Hgb is 12.9. I'm getting infused.

 

[robs477]

Coincidentally, I'm typing this from my hema's office. My ferritin was 28 and on a downward slope, crit is 41.3, Hgb is 12.9. I'm getting infused.

OK, this is where you’ll are losing me…PLEASE pardon my ignorance in advance. Diana, why are you getting infused? As diligent as you vets are on the supplementation and eating, labs etc, why would this happen. It’s starting to concern me more and more being a pre-op seeing all these long term issues everywhere. Its saying in my brain, “Holy shit, if this can happen to her, it can happen to everybody”. So, my questions are:
1) Have you had infusions before?
2) Do all DS patients need this at one time or another?
3) Did you just get lax on your Labs, supplementing, eating or any combination to bring this on?
4) What do you think the percentage of DS patients require infusions long term and if so, how often?

 

[southernlady]

OK, this is where you’ll are losing me…PLEASE pardon my ignorance in advance. Diana, why are you getting infused? As diligent as you vets are on the supplementation and eating, labs etc, why would this happen. It’s starting to concern me more and more being a pre-op seeing all these long term issues everywhere. Its saying in my brain, “Holy shit, if this can happen to her, it can happen to everybody”. So, my questions are:
1) Have you had infusions before?
2) Do all DS patients need this at one time or another?
3) Did you just get lax on your Labs, supplementing, eating or any combination to bring this on?
4) What do you think the percentage of DS patients require infusions long term and if so, how often?

I'll answer for me:
1) I had my first infusion this Sept.
2) Not everyone but remember, iron is absorbed in the small intestine and for DS'ers much of that is bypassed.
3) Even those who are diligent can end up needing infusions...and for many, oral iron tears up their gut.
4) I'll let someone else answer that one.

My husband is 5 weeks ahead of me, his ferritin is high and has been since his DS. I started that way but the last two years, went from 108 in Jan 2013 to the 50's in Jan 2014, to 26 in June 2014.

I am past menopause so that is not a consideration for me and had a hysterectomy over 20 years ago. So my iron should be as stable as a male. BUT it's not.
Thing is, it's NOT just DS'ers but RNY'ers...we just seem to be more ANAL about getting all possible labs and are more use to advocating for ourselves. Many more may need iron that are just not tested.

 

[DianaCox]

Iron infusion - I (and many other DSers) don't absorb iron properly. I was OK for 4 years, and then my ferritin went down to 12. I tried orally supplementing for a miserable year with various oral iron supplements, all of which made me nauseous and/or constipated - and didn't change my ferritin. So I had my first infusion in 2009, and a second one in 2011 (18 months later, when my ferritin went down to 23) - and that one lasted until now.

We should NOT wait until it is out of range (which according to my lab's suggestions is 8!! ridiculous!) before getting infused, because the lower it goes, especially if your hemoglobin is also low, the harder it is to get it back into a nice normal to high range.

It has nothing to do with how I supplement - though I don't even bother trying to take oral iron because it makes me miserable. Getting tanked up every couple of years is MUCH easier!

I don't know what percentage of DSers need to supplement - after 5 years I'm sure it's many more than sooner, and there are way too many factors to figure out how often it will be needed - clearly, women who are menstruating are losing iron at a higher rate. My hematologist said to me that I'm clearly losing iron somewhere (and I have been in menopause for 6 years), based on how it dropped off - but where? Do I have a slow bleed somewhere? Where? Gastrointestinal? Somewhere else? I have a feeling there's an occult blood stool test in my future.

 

[star0210]

@DianaCox how is this infusion going to affect your h&h and total iron serum?

 

[DianaCox]

Probably bump everything up a smidge.

 

[Elizabeth N.]

I had my first iron infusions five years out. I'm post-hysterectomy, so the docs grumbled and I got a top and bottom scope. No blood loss anywhere. A year later I needed infusions again. The docs were bitterly unhappy with this. Apparently you're not "supposed" to lose iron, or maybe better said, we are supposed to be better at recycling our own iron. Whatever. Anyhow, that doc, who is a very alert fella, ran some additional tests that showed me to be positive for hemolysis, which is your body killing your own red blood cells. While this goes slowly for me at the moment, it could change at any time, for reasons I still don't get--but I haven't studied up much on it.

They tell me there's no known way to link this to having WLS.

 

[Charris]

OK, this is where you’ll are losing me…PLEASE pardon my ignorance in advance. Diana, why are you getting infused? As diligent as you vets are on the supplementation and eating, labs etc, why would this happen. It’s starting to concern me more and more being a pre-op seeing all these long term issues everywhere. Its saying in my brain, “Holy shit, if this can happen to her, it can happen to everybody”. So, my questions are:
1) Have you had infusions before?
2) Do all DS patients need this at one time or another?
3) Did you just get lax on your Labs, supplementing, eating or any combination to bring this on?
4) What do you think the percentage of DS patients require infusions long term and if so, how often?

I've had several infusions. I got sick after my hysterectomy. Dr. K said the surgeries were too close together. My mom has 10 siblings 5 of them died from complications from diabetes. RENAL FAILURE. My Gm lost her sight and both her legs. My mother was also in stage 4 renal failure when she passed. The others that are living 2 of them are In Renal failure. I was taking 8 insulin shots a day. I'd way rather supplement every now and then than to go in to renal failure and need dialysis a few times a week.

 

[Munchkin]

I had my DS about the same time as @DianaCox . I have never yet had an infusion. Why? No way to tell for sure. First 5 or so years post, I lived in MN and drank highly mineralized well water. But I moved away from there in 2008. And iron was the only pill that made me sick. So I didn't take it till I found an iron glycinate I could tolerate last year. So I didn't even take any iron supplements for about the first 10 years. And my iron is fine. The multis I take every day have a little iron but not much. I do use cast iron skillets quite often.

Lots of normies have these same problems. They just never get tested to find out!

 

[robs477]

Lots of normies have these same problems. They just never get tested to find out!

Thank you Ladies for the info. You guys are pricelss, and I truly mean that! I just learned a lot. AGAIN! I think that last sentence @Munchkin said says a lot too. I’ll bet there’s a lot of non-DS folks iron deficient also, you guys are just on top of it more. Also, I do understand the individuality of it all. I can remember way back that my Mom was always low on iron and had to take some kind of pill. Also, many ladies have that monthly depletion. Bottom line for me, even if every DS patient had an iron problem, it appears to be a minor inconvenience for the most part for many, but when compared to never having the DS and having the plethora of all the other MO related issues, (not to mention quality of life)...many wouldn’t even be around to have the need to have your iron checked...I got it!