Anemia Update

So I had my visit with the hematologist and once again I'm here asking for advice from my fellow RNYers. Maybe I had unrealistic expectations going into my visit but I can't help but feel discouraged. He did acknowledge the fact that I am anemic and my ferritin level is low but he basically said it was because of my surgery. He said that it's obvious I don't absorb iron. So his soloution was to continue doing iron infusions. In November I had 3 Venefor infusions at 200mg each which brought my ferritin from 5 to 12. He said I would most likely need infusions the rest of my life or until I become pre-menopausal. I asked him why my ferritin dropped in 5 weeks but he could not tell me why. Maybe I'm stressed over nothing, but wouldn't a referral from my PCPindicate there is a problem that is out of her range to fix? He ordered labs (CBC, Iron/Transferrin,B12/Folate) to establish a baseline for him and once they are back he is going to order infusions. He couldn't tell me the dosage or frequency of the infusions until the labs came back, which I totally understand.

1. Is it normal for ferritin to drop in such a short time span? (It went from 12 to 6 in 5 weeks) I thought ferritin was your "storage" so shouldn't your body make more red blood cells? My ferritin was low for quite some time so does it need more and more to keep a reserve?

Any and all suggestions/comments are appreciated!!!  Thanks for listening!

Amanda

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Hi All,

back in October 2013 I was diagnosed with anemia. I presented to my PCP for an unrelated complaint and my blood work came back all kinds of crazy. 

WBC: 9.07

RBC: 4.19

Hemoglobin: 9.7 (Range of 12.0-15.0)

Hematocrit: 31 (Range of 35-45)

MCV: 75 (Range of 80-99)

MCH: 23 (Range of 27-34)

RDW: 15.9 (Range 9.0-14.5)

Platlet Count: 470 (Range 140-400)

The biggest surprise of all, and to quote my doc, "Your ferritin is almost non-exsistent" Which is a 4. (Range of 20-200)

I have been taking iron since surgery, obviously not enough etc. She wanted to try 1 month on a different iron and recheck. We did that and my ferritin jumped up to a whopping 5. So at this point she is scheduling my infusions. I did 3 Venofer infusions and had blood drawn a month later. (It should have been right after the last infusion and 2 weeks after that. I misread my orders) 

January 1st I had labs redrawn:

WBC: 5.24

RBC: 4.77

Hemoglobin: 12.5

Hematocrit: 38

MCV: 80

MCH: 26

RDW: 19.7

Platelet Count: 334.

Ferritin: 12

Now 5 weeks later my blood work came back. Not good. My iron/total iron binding/transferrin saturation came back perfect. Not low. Not high. Right in the middle. However...

Hemoglobin: 11.2

Ferritin: 6

Has anyone ever had this happen before? My PCP and I were in agreement that a Ferritin of 12 is still low, but we were on the right track. Now it seems we're going backwards. The second week of January I did have some odd, unknown bleeding in my mouth. It was enough I had to rinse and spit, but I could not find the source. It happened 7-8 times one day and 2 the next. And not again. She ordered a PT/INR and that was normal. But did mention if it happened again she would talk with a Hematologist for an opinion. After this last set came back, she called me with the results and a referral to a Hematologist, who I see next Thursday. In the interim does anybody have suggestions,comments or personal experiences they would like to share? 

My initial  4 iron infusions got me from 9 to 95... I am post menopausal and we thought that I will not need another series in few years. The following year my ferritin dropped to 25..  I got another series of 4. This time I ended up with ferrritin in 190.. Only to drop in 6 months to 95.  But since then overt one year it dropped only to 80's.. So far so good. I will see this year in April or May what my level would be.   A lot of people report that the infused iron dfo not last long in us. The hemas don't know why, so they keep pumping us with iron.

Not sure how old you are and if you plan to have children. If not - getting endomertial ablastion helps in eliminating or reducing blood loss during periods. But that is done mostly in women who are not planing to have children. 

If you don't mind me asking, what kind of iron did you get? Maybe that makes a difference? As I said above my ferritin went from a 5 to a 12. Then back down to 6. The hematologist did not order any tests etc to find a reason why it dropped, he just wanted to start infusions. I know iron takes calcium so I don't want to become calcium deficient in the interim. And it aids in tooth decay. I am 32 and eventually I plan on having children...My cycle is extremely regular and has not changed. Even when I was at my heaviest I always had a regular cycle.

I think I got another iron, but I am not sure if that matter, most of the time they do not know why our iron do not hold Up. I dont think there are any tests that he could do. If you know of any- left me know. 

Based on my experriance - an initial jump in ferritin is the body loading on it - then a drop may indicate some of it did not get really "attached" to proteins ort got used to replace some low numbers in the bone marrow,   build more blood (your new numbers - Hemoglobin, MCV, Etc - indicates your body is building new - bigger RBC - that weere the iron went.  You having menses cause loss of blood that needs to be relaplaced.

As for calcium - calcium gets absorb before iron. So taking irton does not deplete your calcium. 

Since iron binds to proteins (ferrritin) I always make sure to load on proteins before asnd during infusion days.  

Not sure what iron you tookm but many people report good results with OTC carbonyl iron when taken in higher dosasge together with enough vit C, and ast least 2 hrs away from calcium and other  vitamins or coffee / black tea. 

The doc prescribed iron does not get absorb by us well enough. 

You may try that to limit how many times you would infusions. 

Also my hemo told me that measuringb ferritin cames error - and when he sees 10 - to him tghe patient masy be really 5-15... Depends on many factors. 

Inflammation in the body casnt make ferritin # reading really high - even whern there irton storage is rather low.