Question:
Iron Infusions, etc.
(I posted this in the main message board, but am also posting it here on Q&A . . . ) D-R-A-M-A, D-R-A-M-A, D-R-A-M-A, and drama was her name-oh! OK. It's been awhile again since I posted, but here I am, back again whining and needing support . . . For the past couple months I've been feeling REALLY tired & weak, getting worse and worse. I went for my labs about a month ago. My protein & B12 levels were good, but he was concerned about my iron so he sent me to a hematologist, as well as to a neurologist to delve into some central nervous system-type issues I've been having . . I finally just got into the hematologist Monday. He explained to me that a normal level is 14, low is 11, anemic is 8 and I'm a 3. (It all sounds greek to me, but I think he was referring to hemoglobin) Because I take a multi-vitamin w/iron & minerals 2X daily and an extra iron tablet each day, he's assuming I'm malabsorbing iron from supplements and food, but is also referring me to have me checked for internal bleeding. He wanted me to start iron infusions right away. So yesterday I go for my first in a 3-week series of iron infusions, and lo-and-behold I break out in extreme hives from the test dose, so he can't proceed with the treatment. Apparently, there is another iron infusion drug he can use as a second choice, but it's "not approved" so there may be a problem with insurance. What then??? And how long can I walk around as a 3??? Am I dropping to a 2, 1, 0, or negative as we speak?? I'm trying my hardest to be strong, but I am really very scared. I've battled depression most of my adult life, and I am a trooper. I always found a way to plaster a smile on my face and make my day happen successfully. But this anemia is kicking my butt. It's unlike any sick I've ever felt. (Maybe that's because I finally felt what feeling good really felt like, and I love it!) I was so looking at the glass half-full instead of half-empty and glad when there seemed to be an end in sight, and then I turn out allergic to the end. Then, of course, in the back of my mind I'm thinking "is this the kind of thing they will want to reverse my RNY for??" (????) Has this happened to anybody? What can I expect from here? One thing I did learn, though, is we really are our own best stewarts of our health care. I trusted the Dr's to know things and take care of me. My family doctor AND my surgeon both had these results, but neither of them told me I was a 3 when I should be a 14. Actually, my PCP told me I was "mildly anemic" and I should take an iron supplement until my surgeon reviewed the results. From here on in, I will request a copy of my labs and monitor that along with my doctors. Then again, maybe I'm over reacting, who knows. Do you think I need some cheese to go with this whine?!?! Audra, Open RNY 8-7-03. 5'6"/248/fluctuating 139-143/140 — jellybean0605 (posted on September 16, 2004)
September 16, 2004
Please go get some chloraphyl asap atyour health food store and takeit 3
times/day. you will notice adifferance in a few days and see an improvement
in your blood work inaweek or two.iron does not work because because it
isnt readily absorbed by the body chloraphyl is.All the best! Tracey
— traceybubbles
September 16, 2004
Yes, if you are a BPD or RNY type, we malabsorb iron. It just takes time
for it to show up. Yours probably was dropping gradually over time, which
is why, yes, you need to track your labs along with them. YOU will spot
trends before they do. You're only looking at YOUR labs, they're looking at
50/day! I'm guessing you took ferrous sulfate, and you didn't mention vit
C, so I'm guessing you took it whenever convenient and didn't know to
isolate it? There are iron SHOTS, as well as the infusions. If you can
find someone to Z-track it for you, it should not leave a stain. It's a
much slower way to build up the iron, but doing that plus correct oral
supps should gradually build you up over time, as long as there is no other
disease process going on, of course.
— vitalady
September 16, 2004
If your hemaglobin is 3 I am surprised they ae not going to give you a
blood transfusion to get it up and have you feeling better fast. I do not
know that much about treatment of anemia but I do know people ussually get
transfusions if their HGB is that low and you are that symptomatic. Keeping
tract of your own lab work was an important tip I recieved at this site. I
put it in an excel program so I can easily see any changes or trends. Good
luck it seems to me you should not wait to get this corrected Your hgb
carries oyxgen to your body and your ability is low this can affe. RNY
11/02 300/140ish
— cathy G.
September 16, 2004
Audra: I, also, am shocked that your doctor has not done something sooner.
This is serious. You might also ask him about B12 and ferrous sulfate
levels. These can factor in on the hemoglobin. The B12 injections work so
fast and the ferrous sulfate will definitely make you feel better. I would
ask the dr. about all this and if I didn't get a satisfying answer, find
another dr...quick!!!!!
— juju524
September 16, 2004
Same here,Went in just a couple weeks ago blood down to6.6
Doc sent me in for blood transfusion.Up to about 11 Had a period went down
to a 9.Taking iron tablets,going in to gyn to see if something can be done
about my period cause they are less then 20 days apart and very
painful.Also being sent to a Doc of internal meds.They want to see if I'am
having problems with absorbing also.
But if you are going to have cheese with your wine I will be glad to share
with you baby swiss or chedder?(LOL) .Keep us updated.And Good Luck RNY
264/144/135 out 16 months
— madbird
September 16, 2004
Hi Audra, Long time no talk or see! It's funny you are running into this
as I just spent 4 days last week, 5 hours a day getting iron infusions. I
assume what they tried to infuse into you was diluted with saline and done
slowly through an IV. If not then that may have been why you reacted so
bad. I got 250mg of iron each time, but the total solution injected was
about 270ml. The first day I got a low grade headache off of it but that's
it.
<p>I'm guessing you are mixing up numbers because if your hemoglobin
is 3 then you need blood transfusions. Mine got down in the 7's after my
first PS and they were freaking about that. I know how I felt at that
range I cannot even imagine what one would feel like at a 3. I had my 18
month blood work last month and my hemglobin was 10.5 and my iron I believe
was like 5. So I'm thinking maybe the 3 is your iron level, at least
that's what I hope is the case. What kind of iron supplement are you
taking? If it's ferrous sulfate we really do not absorb that so you need a
different kind. Not sure which one but I know some others on this board
do.
<p>As far as the docs and reading bloodwork I've had a somewhat
similar experience. At 12 months Georgen said my blood work was pretty
good but my liver numbers were a little whacko and my good cholesterol was
low, but did not tell me it was 24. As I was leaving that day I asked for
a copy of the results and as I looked at them I freaked when I saw the HDL,
plus there were flags on quite a number of things. I had an appointment in
a few weeks with my internist so I took a copy along. Good thing I did as
he was not happy with the liver numbers at all and did further testing. He
found I was low in zinc. He also reran the bad things and found out that
my HDL was 42, not 24, so Theda Clark must have reversed the numbers when
recording it, as it is impossible for my HDL to have changed from 24 to 42
in 2 weeks. At that point I realized that as anal as the WL docs are about
us getting our labs they seem to brush things off a little too easy. The
same happened with my hemoglobin and iron. They gave me sheets with goods
rich in iron and some other things I am slightly low in, but that was it.
When my internist saw my iron and hemoglobin he decided it was time to get
things up to where they should be, especially since I'm having another PS
in less than 2 months. In my case my iron and hemoglobin were fine till I
had the first PS and I just have never been able to recover from the 5 unit
blood loss, even though I got 3 units of blood. Then again I had another
PS 3+ months ago, so my body just needed some help to get back to normal.
<p>As far as the experimental drug insurance may cover it because
something needs to be done and you cannot tolerate the standard approved.
I'd fight all the way, that's for sure. I don't have any great words of
wisdom for you but just know I am here and only across town if you need to
talk. I'd definitely ask for a copy of the labs so that you can see first
hand exactly what numbers belong with each thing. You may have missed the
hemoglobin number as they were rattling many things off too you. I cannot
imagine that any doc would ignore a hemoglobin of 3, but could imagine them
ignoring a iron level of 3. Keep in touch!
— zoedogcbr
September 16, 2004
Audra...if your hemoglobin is 3, you must go to the ER IMMEDIATELY!! You
need blood transfusions. If you're confused and it's your iron level
that's a 3, then I'm really not sure about that because I don't know
anything about that part. But a hemoglobin of 3 is deadly. Don't want to
scare you, but you need to get a direct answer from one of your docs about
whether it's the hemoglobin or the iron level that's 3 and go from there.
Good luck and God bless..kathy
— Katherine F.
September 18, 2004
My ferratin iron level was 1 last week. I started IV iron treatments this
past week. I've had 2 already, 1 more to go next week. I think I feel a
little better but it could be psychological LOL. My iron was low before my
RNY 13 months ago, it was 8, none of the docs or the surgeon told me. Now
that I'm bypassed, I haven't absorbed any iron from pills for a whole year.
When my family doctor refered me for the iron IV in June, my level was 7.
By August it was 1. So yes, it can go down very fast. I'm hoping to feel
the effects of the iron IV in the next few months. More iron IV's are
definately in my future according to the specialist. They are easy and
mostly painless. The specialist told me there are 2 different iron meds
that can be used in IV therapy. The one he gave me was Venofer. I don't
know the name of the other. Sorry. Good luck getting those levels up :)
PS. I got all the info I needed for my family doc about iron IV through
this website. It is not a common therapy here in Canada.
— mary ann T.
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