Anemia - going to hemotologist

July 7, 2006

Wow, my second post in two days! Yesterday I posted on how wonderful

things have been. I know I have been dealing with anemia for the past

two years and it has just gotten to be 'the norm' and never looked at

as debilitating. I am exhausted and nothing makes me feel any better,

so I just keep plugging along and taking the iron 2x a day and

getting my follow up labs and told to keep doing this. In my post

yesterday, I told you I was starting to ride horses again. This is my

passion and I think of nothing else all week. I got to the barn, and

yes I was tired, I tacked up and started riding. I could not do

anything but walk my horse. I would try to post in trots and got 1/2

way around the arena and had to stop. I kept trying to push myself

because I know I have more than what I was doing, and finally I

blacked out while riding. Thankfully, he stopped and I just layed

there across his back for a moment, but this has never happened

before. I could barely walk and was confused and my hands were

shaking. I know it is the anemia and lack of oxygen to muscles.

I had made an appt earlier this week with a local hemotologist and

that is scheduled for next week. My questions are these: Since the DS

is not a popular procedure around here (Chicago) all my docs have

many questions. My labs are as follows:

Hgb - 7

MCV - 61

MCH - 18

TIBC - 643

Iron Sat - 1<

Ferritin - 1

Iron - 8

I have been on oral iron 2-3 xs daily over the past 2 years with no

improvement, always taken with vit.C. This newfound extreme weakness

and blacking out has me afraid. Even in the phone consultation to

make the appointment, I felt like they predetermined that I would

just need to continue oral iron and follow up.

Becasue my care is now going to be specialized under a heme guy, and

not my PCP, do I go with the flow and do the same thing I have been

for 2 years? I am frustrated (I know, even before I get in to see the

guy) from the fatigue and because my passion for riding has to stop

becasue of the danger.

Does anyone have any suggestions on how to explain the DS and anemia

treatment from their own experience to a physician who has very

limited knowledge of the procedure?

Thank you,

Ellen W

July 9, 2006

Thank you all for your replies, and i apologize for not responding

sooner. After I posted this, I thought " What is stopping you from

calling Dee and just asking? " DUH!!! So, I did call her and she said

to have myself checked, just so I didn't have trouble with driving

and possibly passing out - Be safe. So, on the way home from work

Friday I stopped by the ER and am just getting home from being

admitted. While I did not have the picture to show the doctors, the

hematologist did say she was going to call Dr. K to get a better

understanding of how we absorb nutrients and what dosage we can go up

too in the event certain meds do not get absorbed fully.

I had consults from my internal med. who said I should start with

iron injections and he believes the lowering counts to be caused by

my only apparent blood loss; periods. He then consulted the GYN who

said " Yup, lets do a uterine ablation, better yet you can be sure it

won't be a future problem and have a hysterectomy. He said he would

have just pumped me up with transfusions and then dealt with

injections of iron later. Then, the hematologist was never informed

of the start of iron injections, and wanted me started with an

infusion and was confused as to why I was confused with what I should

be doing to fix this. The labs kept coming back with the numbers

going up to 8.5 hgb down to 7.3 and back to 8.3 inthe last three

days, which caused even more confusion. Needless to say, I am still

confused. I am going to do this: Continue with iron injections three

times a week 100 mg Dextron until the end of the month. I am supposed

to have a pelvic ultrasound and then consult the GYN about ablation

vs. hysterectomy. Then meet with the hematologist at end of the month

to see where I am.

I have been taking iron daily for the last two years now. And yes,

there are days when I miss a dose, but like the calcium I have iron

stashed everywhere so that when I remember I take it. I can honestly

say I have always gotten at least one dose in a day, and 90% of the

time in the last two years I have managed to get both doses in,

inbetween my coffees to keep my body awake and my calcium/TUMs. It

would seem that I have been below 10 hgb for at least three years,

since reconstructive surgeries and just do not seem to go upwards. I

will let you know how things turn out. Thank you again for all your

replies. No horseback riding for me until I get levels up somewhat,

makes me sad.

Ellen W

July 9, 2006

Ellen, thank goodness you got that checked quickly. Don't feel sorry,

you will be back riding before you know it and you will feel much, much

better.

Marta

> I

> will let you know how things turn out. Thank you again for all your

> replies. No horseback riding for me until I get levels up somewhat,

> makes me sad.

>

> Ellen W

July 9, 2006

In a message dated 7/9/2006 7:32:27 P.M. Central Daylight Time,

ewagen@... writes:

.. I am supposed

to have a pelvic ultrasound and then consult the GYN about ablation

vs. hysterectomy. Then meet with the hematologist at end of the month

to see where I am.

______________________________

Fyi, I asked about an ablation prior to my Hyst. The Gyno told me that it

was better to go ahead and have a hyst because the majority of people end up

having a hyst anyway and why worry with a ablation? I didn't plan on needing my

uterus anyway and wanted a hyst anyway. The best move I ever made. My HGB has

been low normal ever since and I'm sometimes forgetful about taking my iron.

Actually I hate to take it due to the smelly fart situation, and forget on

purpose when I'm going to be around people. But before the hyst. I had blood

transfusions and as hospitalized at Christmas in 2004(?) in an emergency

situation when my routine labs came back at panic levels and transfused with

prbcs and had been on oral and iv iron infusions. Hopefully those days are gone

with my uterus!

Mel

July 9, 2006

In a message dated 7/9/2006 11:47:11 P.M. Central Daylight Time,

plwboy1@... writes:

wow Ellen. I am so sorry. Im anemic too but yours sounds way more severe. Im

confused- why a possible hysterectomy?

V-

________________________________

Vicki

Not ellen, But Blood loss from Uterine flow is a common cause of anemia

in women according to dr K. When I talked to him after seeing my Male GYN he

told me that I wouldn't be having these problems that he had a doc there that

he worked with who would have done what he wanted. MY male GYN wanted to do

The whole Anemia workup which had been done before. And we had already

decided it was from uterine bleeding(duh-2 periods a month!) A new female gyn

and

presto, hyst a month later and I'm better!

Mel- who

loves her lady gyn

July 9, 2006

wow Ellen. I am so sorry. Im anemic too but yours sounds way more severe. Im

confused- why a possible hysterectomy?

V-

ilbn69 wrote: