HELP! End of rope with doctors...am I the doctor?

[Guest guest]

I'm currently researching on the Internet and my husband is even home

today trying to help me. If any of you could please help steer us in

the right direction today--I'm at a loss now even where to turn, who

to see!

I'm becoming quite discouraged because I go to a prominent hospital

and I'm not getting the level of care I think I should be getting.

It's not negligent; it just seems as though I have to think of all

the ideas, do my research and present them. This hospital has almost

every specialty and sub-specialty available in the nation. I just

don't know where to go next!

I was diagnosed with iron-deficiency anemia in early February.

Despite long-standing hormonal migraines, no blood had been checked

since 2001. I requested blood check at " well woman " exam Feb 2004 and

that is when anemia was discovered. Looking back, sure I had it a

good two years ago as I was profoundly fatigued, losing a lot of hair

in the shower, and this was all " misdiagnosed " as depression when in

reality I just needed a nap.

Here is my lab history since early February.

2/3/04: H&H (10.4, 31.9; normal range 11.5, 33.3); ferritin 6.8

(normal 20-300). Started on ferrous sulfate twice a day. Hemoccult

cards ruled out occult sources of blood loss.

2/27/04: H&H (11.6, 35.4; normals range as above, out of anemic

range; still iron deficient; ferritin 14.4 (normal 20-300). Remained

on twice daily iron. Doctor pleased with immediate results.

5/06/04: Ferritin had decreased to 13.0. Doctor recommended iron

three times daily.

Family doctor at prominent hospital oversses all my care. I have had

two gyn surgeons who have had access to all this information at same

hospital; one outside. Sometimes I think the reason they are not

helping me further is because they want me to have the TVH they

recommended. I'm SO frustrated!!!!

Family doc overseeing all care had not retested blood since 2/27, so

my DH and I decided we should request it; I was still tired and we

just thought it was time. Doctor placed orders, but then I got two

periods in a row (my normal period and one caused by

starting/stopping BCP after 7 days; i.e. a heavier amount of bleeding

than had been normal for me).

My main doctor was out yesterday and will be for three weeks

(hospital service, vacation), so I saw a younger doctor (resident?)

in his absence. He almost left me leave without drawing my blood

(orders were standing), saying there was little chance I would be

anemic if I was taking iron. I insisted on test. Later that day my

main doctor called me with results from hospital and left message on

my voice mail. All he said was " Fortunately there are no signs of red

blood cell count decrease, but you are certain still iron

deficient. " He said he wished I had been home to speak with him and

suggested iron three times daily and a re-test in two months.

WHAT AM I TO DO? I'm still tired, just had two periods (my normal

period, plus another period caused by starting and stopping Mircette

BCP after just 7 days due to severe migraines). The BCP caused a

second period that was heavier than my usual. It stopped after 5-6

days, but now a couple days later I have wipe bleeding, nothing even

on pad, but I'm worried it won't stop.

My husband and I need to get progressive about this, but don't know

where to turn. Injections of B12, etc.? Seeing a reproductive

endocrinologist? Seeing my favorite gyn surgeon of my three consults

to see what she suggests? What type of doctor? I don't want any

invasive treatment at this time because prior to the birth control

pill " mess up " I was doing just fine in watchful waiting.

My main goals are to build my ferritin back up. I am out of anemic

range, but still iron deficient. Is there any other way to do this

that they should be suggesting and are not? I hate to toss ideas at

them, but we're getting very frustrated. So tired today that my DH

took off of work to help me cope and I don't ever do this.

Also want to do whatever is necessary to avoid hysterectomy and would

like to see someone who might suggest some type of therapy other myo

or embo at this time--any drugs, therapies. They had tried the

Mircette to hopefully control hormonal migraines and this was the

second BCP (first Yasmin) that worsened my already severe migraines.

Is there anything else? Progestin-release IUD? Don't want Lupron or

Depo-Provera.

So frustrated that I am the one who has to think of everything

(including asking for my blood to be drawn earlier this year after

five years with migraines, nothing working, and docs putting me on

disability as a result!) My life is on hold, and this morning I sure

would appreciate any advice from you on what to do (if anything)

further about my ferritin and what steps I can take to avoid myo,

UFE, or hyst at this point. Main concern is ferritin level, as I'm

very fatigued.

Can you PLEASE help? We have the time to do things today, husband

home to help me. This is a " prominent " hospital with many resources,

but I don't know whether to go to Endocrinlogy (repro endo). Thank

you so much! Sorry for long post.

Meg

[Guest guest]

Meg:

Just thinking aloud here...but...

If you have not done so already, perhaps you should be tested for

HYPOTHYROIDISM. Some of your symptoms (fatigue, bleeding irregularities, AND

persistently

low ferritin) could be suggestive of a poorly functioning thyroid.

And... could your hormonal migraines be influenced by possible thyroid

problems? I don't know the answer to that, but it wouldn't hurt to check it out.

That's just speculation from a fellow patient--not evaluation from a medical

professional. But, perhaps you need to have a new doc (hematologist?) assess

your situation--with fresh eyes. And rule out your thyroid as a possible

contributing factor.

" Textbook " iron deficiency anemia is seen in blood work with the following

results:

low hgb, low ferritin, low MCV, and sometimes elevated platelets. All of

which at one time, you apparently had. You'll have to get a copy of your latest

CBC to check your most recent counts.

If all your red blood cell parameters are now OK (which your doc told you,

no?) then it APPEARS that you are technically no longer iron deficient. HOWEVER,

if your ferritin is still low, you are still IRON LACKING.--meaning your

problem, as you know, is to build up your stored iron.

If however, you find that your MCV (one of the RBC parameters on your CBC) is

still low, (even with *normal hgb*) you would be considered still IRON

DEFICIENT.

What is MCV, anyway?--it's the average size (actually, volume) of each one of

your red cells. (RBC) The total number of your RBC divided by the hematocrit.

When your MCV is low,--even if your hgb is normal, that's very convincing

evidence of iron deficiency. Because when you're iron deficient, your many of

your RBCs can be smaller, irregular in size.

BTW, ferritin is not iron, but is a protein that STORES IRON and releases it

on an as-needed basis. Short term storage. (There's also a long-term storage

form of iron, but I'll spare you the " hemotrivia " !)

But this is how ferritin works: Too little iron in your diet? Or

iron-depleted by excessive menstrual blood loss? Ferritin can release iron to

compensate

for the lack. Too much iron? Ferritin can store the excess, until needed. We

should all have some iron in storage to compensate for changes in diet, and of

course, excessive blood loss.

Any iron that is not being used by the body to make hemoglobin for your red

blood cells will be stored as ferritin.

BUT-It takes a while to build back those ferritin reserves--and remember, the

body is limited in how much iron it can absorb.

There apparently is a " rule " in hematology that says the first values to go

awry are the LAST to return to normal. Unlike hemoglobin, your ferritin

deficit will take a long time to normalize, and might well be the LAST to return

to

normal.

So, Meg, try to be patient. Patient, but PERSISTENT.

The only way to correct the deficit is with supplementation.--AND by adopting

strategies to improve your ABSORPTION of the iron you are taking in.

I posted a short while ago about dietary measures to help improve your

absorption of iron. (i.e. combining citrus with meat, heme and non-heme sources

of

iron, etc.).

But, there are foods/drinks to AVOID as well. to maximize iron absorption:

such as not drinking coffee (which contains polyphenols) and tea (which contains

tannins). Also, antacids are known to diminish absorption. And there are

other measures which some of the IDA LOL (=Iron Deficiency Anemic Ladies of the

List) can suggest.

Perhaps a consult with a hematologist can assist you in getting your ferritin

levels up, and if necessary, administer more sophisticated iron tests.

And don't forget to get your thyroid checked!

-Roma

In a message dated 5/7/2004 4:38:17 PM Eastern Daylight Time,

galations522@... writes:

I'm becoming quite discouraged because I go to a prominent hospital

and I'm not getting the level of care I think I should be getting.

It's not negligent; it just seems as though I have to think of all

the ideas, do my research and present them. This hospital has almost

every specialty and sub-specialty available in the nation. I just

don't know where to go next!

[Guest guest]

Meg:

Just thinking aloud here...but...

If you have not done so already, perhaps you should be tested for

HYPOTHYROIDISM. Some of your symptoms (fatigue, bleeding irregularities, AND

persistently

low ferritin) could be suggestive of a poorly functioning thyroid.

And... could your hormonal migraines be influenced by possible thyroid

problems? I don't know the answer to that, but it wouldn't hurt to check it out.

That's just speculation from a fellow patient--not evaluation from a medical

professional. But, perhaps you need to have a new doc (hematologist?) assess

your situation--with fresh eyes. And rule out your thyroid as a possible

contributing factor.

" Textbook " iron deficiency anemia is seen in blood work with the following

results:

low hgb, low ferritin, low MCV, and sometimes elevated platelets. All of

which at one time, you apparently had. You'll have to get a copy of your latest

CBC to check your most recent counts.

If all your red blood cell parameters are now OK (which your doc told you,

no?) then it APPEARS that you are technically no longer iron deficient. HOWEVER,

if your ferritin is still low, you are still IRON LACKING.--meaning your

problem, as you know, is to build up your stored iron.

If however, you find that your MCV (one of the RBC parameters on your CBC) is

still low, (even with *normal hgb*) you would be considered still IRON

DEFICIENT.

What is MCV, anyway?--it's the average size (actually, volume) of each one of

your red cells. (RBC) The total number of your RBC divided by the hematocrit.

When your MCV is low,--even if your hgb is normal, that's very convincing

evidence of iron deficiency. Because when you're iron deficient, your many of

your RBCs can be smaller, irregular in size.

BTW, ferritin is not iron, but is a protein that STORES IRON and releases it

on an as-needed basis. Short term storage. (There's also a long-term storage

form of iron, but I'll spare you the " hemotrivia " !)

But this is how ferritin works: Too little iron in your diet? Or

iron-depleted by excessive menstrual blood loss? Ferritin can release iron to

compensate

for the lack. Too much iron? Ferritin can store the excess, until needed. We

should all have some iron in storage to compensate for changes in diet, and of

course, excessive blood loss.

Any iron that is not being used by the body to make hemoglobin for your red

blood cells will be stored as ferritin.

BUT-It takes a while to build back those ferritin reserves--and remember, the

body is limited in how much iron it can absorb.

There apparently is a " rule " in hematology that says the first values to go

awry are the LAST to return to normal. Unlike hemoglobin, your ferritin

deficit will take a long time to normalize, and might well be the LAST to return

to

normal.

So, Meg, try to be patient. Patient, but PERSISTENT.

The only way to correct the deficit is with supplementation.--AND by adopting

strategies to improve your ABSORPTION of the iron you are taking in.

I posted a short while ago about dietary measures to help improve your

absorption of iron. (i.e. combining citrus with meat, heme and non-heme sources

of

iron, etc.).

But, there are foods/drinks to AVOID as well. to maximize iron absorption:

such as not drinking coffee (which contains polyphenols) and tea (which contains

tannins). Also, antacids are known to diminish absorption. And there are

other measures which some of the IDA LOL (=Iron Deficiency Anemic Ladies of the

List) can suggest.

Perhaps a consult with a hematologist can assist you in getting your ferritin

levels up, and if necessary, administer more sophisticated iron tests.

And don't forget to get your thyroid checked!

-Roma

In a message dated 5/7/2004 4:38:17 PM Eastern Daylight Time,

galations522@... writes:

I'm becoming quite discouraged because I go to a prominent hospital

and I'm not getting the level of care I think I should be getting.

It's not negligent; it just seems as though I have to think of all

the ideas, do my research and present them. This hospital has almost

every specialty and sub-specialty available in the nation. I just

don't know where to go next!

[Guest guest]

Meg:

Just thinking aloud here...but...

If you have not done so already, perhaps you should be tested for

HYPOTHYROIDISM. Some of your symptoms (fatigue, bleeding irregularities, AND

persistently

low ferritin) could be suggestive of a poorly functioning thyroid.

And... could your hormonal migraines be influenced by possible thyroid

problems? I don't know the answer to that, but it wouldn't hurt to check it out.

That's just speculation from a fellow patient--not evaluation from a medical

professional. But, perhaps you need to have a new doc (hematologist?) assess

your situation--with fresh eyes. And rule out your thyroid as a possible

contributing factor.

" Textbook " iron deficiency anemia is seen in blood work with the following

results:

low hgb, low ferritin, low MCV, and sometimes elevated platelets. All of

which at one time, you apparently had. You'll have to get a copy of your latest

CBC to check your most recent counts.

If all your red blood cell parameters are now OK (which your doc told you,

no?) then it APPEARS that you are technically no longer iron deficient. HOWEVER,

if your ferritin is still low, you are still IRON LACKING.--meaning your

problem, as you know, is to build up your stored iron.

If however, you find that your MCV (one of the RBC parameters on your CBC) is

still low, (even with *normal hgb*) you would be considered still IRON

DEFICIENT.

What is MCV, anyway?--it's the average size (actually, volume) of each one of

your red cells. (RBC) The total number of your RBC divided by the hematocrit.

When your MCV is low,--even if your hgb is normal, that's very convincing

evidence of iron deficiency. Because when you're iron deficient, your many of

your RBCs can be smaller, irregular in size.

BTW, ferritin is not iron, but is a protein that STORES IRON and releases it

on an as-needed basis. Short term storage. (There's also a long-term storage

form of iron, but I'll spare you the " hemotrivia " !)

But this is how ferritin works: Too little iron in your diet? Or

iron-depleted by excessive menstrual blood loss? Ferritin can release iron to

compensate

for the lack. Too much iron? Ferritin can store the excess, until needed. We

should all have some iron in storage to compensate for changes in diet, and of

course, excessive blood loss.

Any iron that is not being used by the body to make hemoglobin for your red

blood cells will be stored as ferritin.

BUT-It takes a while to build back those ferritin reserves--and remember, the

body is limited in how much iron it can absorb.

There apparently is a " rule " in hematology that says the first values to go

awry are the LAST to return to normal. Unlike hemoglobin, your ferritin

deficit will take a long time to normalize, and might well be the LAST to return

to

normal.

So, Meg, try to be patient. Patient, but PERSISTENT.

The only way to correct the deficit is with supplementation.--AND by adopting

strategies to improve your ABSORPTION of the iron you are taking in.

I posted a short while ago about dietary measures to help improve your

absorption of iron. (i.e. combining citrus with meat, heme and non-heme sources

of

iron, etc.).

But, there are foods/drinks to AVOID as well. to maximize iron absorption:

such as not drinking coffee (which contains polyphenols) and tea (which contains

tannins). Also, antacids are known to diminish absorption. And there are

other measures which some of the IDA LOL (=Iron Deficiency Anemic Ladies of the

List) can suggest.

Perhaps a consult with a hematologist can assist you in getting your ferritin

levels up, and if necessary, administer more sophisticated iron tests.

And don't forget to get your thyroid checked!

-Roma

In a message dated 5/7/2004 4:38:17 PM Eastern Daylight Time,

galations522@... writes:

I'm becoming quite discouraged because I go to a prominent hospital

and I'm not getting the level of care I think I should be getting.

It's not negligent; it just seems as though I have to think of all

the ideas, do my research and present them. This hospital has almost

every specialty and sub-specialty available in the nation. I just

don't know where to go next!