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In a message dated 11/17/2004 5:31:42 PM Central Standard Time,

mvnpatten@... writes:

My CBC is normal!!! Yeaaaaaaaaa!!

However, i am very sick for 24 hours after every injection. There

are four GR/DS patients were I work and three of us either have or

are currently receiving IV iron.

I'm sorry this is so long. My question is; Are we the only ones

this is happening to? Has anyone else had iron side effects? What

are you doing for them?

_____________________________________________________________

Mikell,

I had Blood transfusions in December last year. So far(Knock on wood) my

hgb and hct has been low normal since a hyst in April. I go get my labs

Drawn Friday (yearly) so I will have a very good picture of how well the hyst

is

helping because I had a TT/Herina repair and brachioplasty in October. I told

my Gyno the iron problem is from the periods, and if it wasn't the cause, it

sure wasn't helping. A new sympathetic GYN saw the problem from my point oif

view and so far things are better.

Mel

http://hometown.aol.com/mdl1031/

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In a message dated 11/17/2004 5:31:42 PM Central Standard Time,

mvnpatten@... writes:

My CBC is normal!!! Yeaaaaaaaaa!!

However, i am very sick for 24 hours after every injection. There

are four GR/DS patients were I work and three of us either have or

are currently receiving IV iron.

I'm sorry this is so long. My question is; Are we the only ones

this is happening to? Has anyone else had iron side effects? What

______________are you doing for them?

__________________________________________________

Oh, Also....After I had the IV iron Early last year, I was fine the first 2

and then puked for 4 hrs and was dizzy after the 3rd one. I swore never

again! That's when I looked for the new GYN.

Mel

http://hometown.aol.com/mdl1031/

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Hi Mikell

This is not a DS answer but I also had very low iron for some years (before DS

actually). Finally a specialist suggested I take the pill continuously

(ignoring the inactive pills). This meant I didnt get periods at all, and

reduced the monthly drop in iron. My PCP is fully supportive and I have yet to

come across any evidence of detrimental side effects. I havent had a period in

about 3 years, and my iron is pretty good. Just some food for thought....

Cheers,

Kristy

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> I'm sorry this is so long. My question is; Are we the only ones

> this is happening to? Has anyone else had iron side effects? What

> are you doing for them?

>

> Any input would be much appreciated.

>

> Thank you,

> Mikell

Hi Mikell, nice to hear from you! Sorry you are having problems.

(from Alabama) had to have a hysterectomy for excessive

bleeding and that solved her problems. I do not bleed and that is

probably why I do not have anemia. I noticed my H/H was trending

downward and switched from Centrum Silver to regular Centrum with

iron. My levels are not as high as they were when I was younger and

menstruating, however.

You are not the only ones having this problem, but wow! Such a high

concentration of anemics in one location, odd.

Marta

going off to get checked now...

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> Hi Mikell

>

> This is not a DS answer but I also had very low iron for some years

(before DS actually). Finally a specialist suggested I take the pill

continuously (ignoring the inactive pills). This meant I didnt get

periods at all, and reduced the monthly drop in iron. My PCP is

fully supportive and I have yet to come across any evidence of

detrimental side effects. I havent had a period in about 3 years,

and my iron is pretty good. Just some food for thought....

>

> Cheers,

> Kristy

Thank you Kristy,

I am very progesterone intolerant since my DS surgery, but my GYN

wants to put in a new IUD with some hormones in it that is supposed

to drasticly reduce my periods and maybe even stop them. I already

take an herb called vitex that lightened my periods signigicantly.

Thanks,

Mikell

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>

> > I'm sorry this is so long. My question is; Are we the only ones

> > this is happening to? Has anyone else had iron side effects?

What

> > are you doing for them?

> >

> > Any input would be much appreciated.

> >

> > Thank you,

> > Mikell

>

> Hi Mikell, nice to hear from you! Sorry you are having problems.

> (from Alabama) had to have a hysterectomy for excessive

> bleeding and that solved her problems. I do not bleed and that is

> probably why I do not have anemia. I noticed my H/H was trending

> downward and switched from Centrum Silver to regular Centrum with

> iron. My levels are not as high as they were when I was younger

and

> menstruating, however.

>

> You are not the only ones having this problem, but wow! Such a

high

> concentration of anemics in one location, odd.

>

> Marta

> going off to get checked now...

Hi Marta,

Good to hear from you too!! I am glad you are not anemic, and a

couple of people up here have had hyterectomies too.

I have another question for you. Why are docs so afraid to give IV

iron. Noone would touch me except the oncologist. Everyone else

said they were afraid of anaphalaxis, but I looked it up and the

chances are smaller than a blood transfusion. Just curious.

Thanks,

Mikell

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> I have another question for you. Why are docs so afraid to give IV

> iron. Noone would touch me except the oncologist. Everyone else

> said they were afraid of anaphalaxis, but I looked it up and the

> chances are smaller than a blood transfusion. Just curious.

>

> Thanks,

> Mikell

Yep, no way would I give it myself. I would refer the patient to

Heme/Onc for the infusion. Same logic. Maybe it is more deadly than

having anaphylaxis from other drugs, unsure. I am just afraid, very

afraid! lol Maybe the liability is the issue. I also try to avoid

pregnant woman!

Marta

waiting for my HCT to be spun right now...

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>

> In a message dated 11/17/2004 5:31:42 PM Central Standard Time,

> mvnpatten@y... writes:

>

> My CBC is normal!!! Yeaaaaaaaaa!!

> However, i am very sick for 24 hours after every injection. There

> are four GR/DS patients were I work and three of us either have or

> are currently receiving IV iron.

>

> I'm sorry this is so long. My question is; Are we the only ones

> this is happening to? Has anyone else had iron side effects?

What

> are you doing for them?

> _____________________________________________________________

>

>

>

>

> Mikell,

> I had Blood transfusions in December last year. So far(Knock

on wood) my

> hgb and hct has been low normal since a hyst in April. I go get my

labs

> Drawn Friday (yearly) so I will have a very good picture of how

well the hyst is

> helping because I had a TT/Herina repair and brachioplasty in

October. I told

> my Gyno the iron problem is from the periods, and if it wasn't the

cause, it

> sure wasn't helping. A new sympathetic GYN saw the problem from my

point oif

> view and so far things are better.

> Mel

> http://hometown.aol.com/mdl1031/

>

>

>

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>

> In a message dated 11/17/2004 5:31:42 PM Central Standard Time,

> mvnpatten@y... writes:

>

> My CBC is normal!!! Yeaaaaaaaaa!!

> However, i am very sick for 24 hours after every injection. There

> are four GR/DS patients were I work and three of us either have or

> are currently receiving IV iron.

>

> I'm sorry this is so long. My question is; Are we the only ones

> this is happening to? Has anyone else had iron side effects?

What

> ______________are you doing for them?

>

>

>

> __________________________________________________

>

> Oh, Also....After I had the IV iron Early last year, I was fine the

first 2

> and then puked for 4 hrs and was dizzy after the 3rd one. I swore

never

> again! That's when I looked for the new GYN.

>

> Mel

> http://hometown.aol.com/mdl1031/

>

>

>

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I think you have to have a Acls certified Nurse on

> premises

> to do the infusions and Most docs offices use med techs who either

don't

> have a degree or are LPNS(VN " s) ..My 2 cents.

> Mel

Good point, Mel. We don't have a single nurse working at any of our

many clinics. They are all MA's.

Marta

who has ordered other meds IV, but never Iron

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I do not now if this helps or not. But I no longer have my period and

was always anemic even after my hysterectomy. To keep my iron levels

normal I take : 2 Trinsicon (prescription elemental iron -110 mg

each) with a 500 mg of Vit C to help with absorbtion.

My iron levels were fianlly at the low end of normal at one yr out. I

have them drawn again in January and will know then if they are

holding steady. I have read that many struggle to keep their iron

levels up after surgery, it is just finding the right combination for

you. Have youtried any of the prescription iron pills ? The Trinsicon

works well for me. There are several others too I am just not sure of

their names....what is most important is the amount of elemental iron

in them.

Ginger <><

>

> Hello Friends,

> I have been gone for quite some time, but have been having some

> trouble lately. I am two years+ out and have lost about 150 lbs.

I

> take my supplements religiously and eat well. I was exercising

> regularly until I started school. My problem started in May when I

> had my two year labs. I was anemic with very low iron and ferritin

> levels. My TIBC was very high. I took 2 ferrous fumerates with

OJ,

> on an empty stomach for one month, I then had my period and dropped

> my hemoglobin another point. At that time I changed my iron to one

> twice a day, on an empty stomach with OJ. After three months of

> excrutiating stomach pain, my iron had dropped another 40 points.

My

> hemoglobin was better but my gastroenterologist said that I was not

> absorbing the PO iron. He referred my to the local oncologist who

> has started me on IV iron once a week. I am getting 100mg once a

> week for at least 15 weeks. My CBC is normal!!! Yeaaaaaaaaa!!

> However, i am very sick for 24 hours after every injection. There

> are four GR/DS patients were I work and three of us either have or

> are currently receiving IV iron.

>

> I'm sorry this is so long. My question is; Are we the only ones

> this is happening to? Has anyone else had iron side effects? What

> are you doing for them?

>

> Any input would be much appreciated.

>

> Thank you,

> Mikell

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As far as a uterine ablation that Mel talked about they work for some

people and not for others. I had one before my hysterectomy. It

helped short term, but not long term. My doc explained it was the

last step before a hysterctomy and usually they work, but sometime

they do not. I was the sometime that did not work..so went ahead with

the hysterectomy.

Ginger <><

____________________________________________

>

> Mikell,

> If you don't want a hyst, There is always the option of

uterine ablation. It is Not a major procedure and it burns

(cauterizes) the lining of the uterus. My Step sis had it and loves

it. Same doc reccomended a hyst for me.

> Never knew why the difference.

>

> Mel

> http://hometown.aol.com/mdl1031/

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>

> As far as a uterine ablation that Mel talked about they work for

some

> people and not for others. I had one before my hysterectomy. It

> helped short term, but not long term. My doc explained it was the

> last step before a hysterctomy and usually they work, but sometime

> they do not. I was the sometime that did not work..so went ahead

with

> the hysterectomy.

> Ginger <><

The same happened to me. First the D & C, I kept bleeding. Then the

ablation, and I kept bleeding. Then the hysterectomy. And that

stopped it. I bled for 2 years straight before my hysterectomy, to

the point of anemia. Then 6 mos after my hysterectomy I had my DS

and havent been anemic since.

We are all so different...

Sharon in Onyx

who is still trying to catch up with this chatty bunch...lol

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>

> I think you have to have a Acls certified Nurse on

> > premises

> > to do the infusions and Most docs offices use med techs who

either

> don't

> > have a degree or are LPNS(VN " s) ..My 2 cents.

> > Mel

>

> Good point, Mel. We don't have a single nurse working at any of

our

> many clinics. They are all MA's.

>

> Marta

> who has ordered other meds IV, but never Iron

No nurses Marta?!?

We definately have more MA's than we used to, but luckly we have a

few nurses left.

Mikell

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> Marta,

> Who gives the IV meds you order? Here in Alabama, A RN has to

give IV

> unless certified otherwise. It always frustrated me when I worled

with a LPN

> and they gave us equal patients and then expected The RNS to give

all IV meds

> and cover their charting.

Mel, Sorry, I meant in an outpatient setting. We do have IV

certified LVNs here in California. In our clinic there are no

actually nurses, however. I am not one of the docs who starts her

own IV's and runs fluids and pushes drugs. If, however, I decided to

give a medication IV, then I would have to do it myself.

Marta

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It always frustrated me when I worled

> with a LPN

> > and they gave us equal patients and then expected The RNS to

give

> all IV meds

> > and cover their charting.

And I meant to comment on how unfair that is!

Marta

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  • 3 years later...

B and C vitamins help Iron. and yes Caffeine does deplete the body of

iron and b vitamins.

>

> I heard that coffee or tea can leach iron out of your system, and

that

> B vitamins can help make iron usable to the body. Someone here said

> that there is no natural way to remove iron from the body. Another

> place, I read that only 10% of iron is excreted from the body.

>

> I was wondering if anyone else heard that tea can leach iron. Or

that

> B vitamins make iron more usable.

>

> Pete

>

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