Anemia

[Guest guest]

I'm not sure if it's common or not Sue, but I wouldn't be surprised, especially

since we're

often warned (by some of the leading docs) to " never " take iron.

I think it's always wrong to make blanket statements, as clearly some people may

need

iron (and other related nutrients) and that could in fact be one of the reasons

for their

CFS, esp if their iron deficiency has gone on for years.

Iron is ESSENTIAL for proper immune function and proper neurotransmitter

function...

That being said, have you tried a liver supplement, like dessicated liver, or

there's one

called Energizing Iron? From what I've read, we need all the co-factors along

with iron, in

order to resolve anemia -- like copper, zinc, b12, folic acid, manganese...etc.

Perhaps

your doc could test your copper levels. If you're low, that might explain why

your anemia

still persists.

I was diagnosed as anemic back in June -- haven't been retested yet, but will

try and get

an appt this month. I just started the liver a couple of days ago as I think

(feel) I'm still

pretty bloodless!

Also...infections could be robbing you of the iron or copper (etc). A

lactoferrin supplement

might help you " grab " the iron, keep it from the infections???

Just my two anemic cents!

Dan

[Guest guest]

NellieThe most important thing to determine is how much of the anemia is due to CLL and how much is due to an autoimmune hemolytic anemia. The treatment will differ depending upon the answer. There are many treatment options still available. Rick Furman, MDSent from my Verizon Wireless BlackBerryFrom: nell day Date: Sat, 07 Mar 2009 20:12:48 -0800 (PST)CLL Chronic Lymphocytic Leukemia<CLL@...>; < >Subject: Anemia Has Rituxan stopped working for me? I’ve had only Rituxan and IVIg infusions since my good partial 4-year remission ended in 2005, and my Hemoglobin and Platelets began to tank again. Both infusions have been accompanied by decreasing amounts of steroids and occasional Procrit injections. (After enduring steroids for a year or so, I talked the attendant out of using them at all in conjunction with the IVIg infusions, although I’d had bad reactions to another brand of IVIg, and recently I stopped taking oral ones in advance of the Rituxan infusions but am still enduring infused ones.) I’ve had 27 Rituxan infusions between 9/28/2005 and 3/5/2009. Each time until recently, my Hemoglobin recovered, but after the one I had 1/28/2009, it went even lower, bottoming at 8.5. I suspect the last infusion hasn’t been effective either, as I’m still exhausted. I have an appointment to consult Dr. Rai on March 23, hoping he can suggest other approaches. The last time I consulted him, in 2001, my remission began mysteriously almost immediately without my doing anything further! My oncologist agrees that this fact alone makes it worthwhile to see him again! I had had Fludara and Rituxan in 1999-2000, the remission apparently having been a delayed reaction to the chemo. During much of the remission period, I had frequent phlebotomies to reduce iron overload caused by transfusions in 1999-2001. The remission began to falter just as the Ferritin count neared normal. I’ve been in touch with Kathy Lebedun whose experience with Exjade for Ferritin reduction (while she was transfusion-dependent) apparently has had unexpectedly positive results. I have many other interesting but not particularly painful symptoms which may or may not be relevant: a chronic cough throughout much of the time since the remission ended, a rather sudden onset of Neuropathy (I also have Type 2 Diabetes, but am told the glucose is under good control), dermatological and dental problems and eye infections. But my major complaint is exhaustion. Any advice would be appreciated. Thanks. Nellie of Manhattanage 77, dx 6/99Seize the day!

[Guest guest]

Thank you. Is there any way to diagnose AIHA other than a Coombs test? Have you found this test to be reliable?Nellie of Manhattanage 77, dx 6/99Seize the day!

From: rrfurman@... <rrfurman@...>Subject: Re: Anemia Date: Sunday, March 8, 2009, 10:30 AM

NellieThe most important thing to determine is how much of the anemia is due to CLL and how much is due to an autoimmune hemolytic anemia. The treatment will differ depending upon the answer. There are many treatment options still available. Rick Furman, MD

Sent from my Verizon Wireless BlackBerry

From: nell day Date: Sat, 07 Mar 2009 20:12:48 -0800 (PST)CLL Chronic Lymphocytic Leukemia<CLLLISTSERV (DOT) ACOR.ORG>; <groups (DOT) com>Subject: Anemia

Has Rituxan stopped working for me? I’ve had only Rituxan and IVIg infusions since my good partial 4-year remission ended in 2005, and my Hemoglobin and Platelets began to tank again. Both infusions have been accompanied by decreasing amounts of steroids and occasional Procrit injections. (After enduring steroids for a year or so, I talked the attendant out of using them at all in conjunction with the IVIg infusions, although I’d had bad reactions to another brand of IVIg, and recently I stopped taking oral ones in advance of the Rituxan infusions but am still enduring infused ones.)

I’ve had 27 Rituxan infusions between 9/28/2005 and 3/5/2009 . Each time until recently, my Hemoglobin recovered, but after the one I had 1/28/2009 , it went even lower, bottoming at 8.5. I suspect the last infusion hasn’t been effective either, as I’m still exhausted.

I have an appointment to consult Dr. Rai on March 23, hoping he can suggest other approaches. The last time I consulted him, in 2001, my remission began mysteriously almost immediately without my doing anything further! My oncologist agrees that this fact alone makes it worthwhile to see him again! I had had Fludara and Rituxan in 1999-2000, the remission apparently having been a delayed reaction to the chemo.

During much of the remission period, I had frequent phlebotomies to reduce iron overload caused by transfusions in 1999-2001. The remission began to falter just as the Ferritin count neared normal. I’ve been in touch with Kathy Lebedun whose experience with Exjade for Ferritin reduction (while she was transfusion- dependent) apparently has had unexpectedly positive results.

I have many other interesting but not particularly painful symptoms which may or may not be relevant: a chronic cough throughout much of the time since the remission ended, a rather sudden onset of Neuropathy (I also have Type 2 Diabetes, but am told the glucose is under good control), dermatological and dental problems and eye infections. But my major complaint is exhaustion.

Any advice would be appreciated. Thanks.

Nellie of Manhattanage 77, dx 6/99Seize the day!

[Guest guest]

Yes, there are other things besides the Coombs test that factor in. Sent from my Verizon Wireless BlackBerryFrom: nell day Date: Sun, 08 Mar 2009 19:46:18 -0700 (PDT)< >Subject: Re: Anemia Thank you. Is there any way to diagnose AIHA other than a Coombs test? Have you found this test to be reliable?Nellie of Manhattanage 77, dx 6/99Seize the day!From: rrfurmanmed (DOT) cornell.edu <rrfurmanmed (DOT) cornell.edu>Subject: Re: Anemia Date: Sunday, March 8, 2009, 10:30 AMNellieThe most important thing to determine is how much of the anemia is due to CLL and how much is due to an autoimmune hemolytic anemia. The treatment will differ depending upon the answer. There are many treatment options still available. Rick Furman, MDSent from my Verizon Wireless BlackBerryFrom: nell day Date: Sat, 07 Mar 2009 20:12:48 -0800 (PST)CLL Chronic Lymphocytic Leukemia<CLLLISTSERV (DOT) ACOR.ORG>; <groups (DOT) com>Subject: AnemiaHas Rituxan stopped working for me? I’ve had only Rituxan and IVIg infusions since my good partial 4-year remission ended in 2005, and my Hemoglobin and Platelets began to tank again. Both infusions have been accompanied by decreasing amounts of steroids and occasional Procrit injections. (After enduring steroids for a year or so, I talked the attendant out of using them at all in conjunction with the IVIg infusions, although I’d had bad reactions to another brand of IVIg, and recently I stopped taking oral ones in advance of the Rituxan infusions but am still enduring infused ones.) I’ve had 27 Rituxan infusions between 9/28/2005 and 3/5/2009 . Each time until recently, my Hemoglobin recovered, but after the one I had 1/28/2009 , it went even lower, bottoming at 8.5. I suspect the last infusion hasn’t been effective either, as I’m still exhausted. I have an appointment to consult Dr. Rai on March 23, hoping he can suggest other approaches. The last time I consulted him, in 2001, my remission began mysteriously almost immediately without my doing anything further! My oncologist agrees that this fact alone makes it worthwhile to see him again! I had had Fludara and Rituxan in 1999-2000, the remission apparently having been a delayed reaction to the chemo. During much of the remission period, I had frequent phlebotomies to reduce iron overload caused by transfusions in 1999-2001. The remission began to falter just as the Ferritin count neared normal. I’ve been in touch with Kathy Lebedun whose experience with Exjade for Ferritin reduction (while she was transfusion- dependent) apparently has had unexpectedly positive results. I have many other interesting but not particularly painful symptoms which may or may not be relevant: a chronic cough throughout much of the time since the remission ended, a rather sudden onset of Neuropathy (I also have Type 2 Diabetes, but am told the glucose is under good control), dermatological and dental problems and eye infections. But my major complaint is exhaustion. Any advice would be appreciated. Thanks. Nellie of Manhattanage 77, dx 6/99Seize the day!

[Guest guest]

Hi Keianne

Here is a search link on info about HCV + Anemia

http://search./search?ei=utf-8 & fr=slv8-tyc7 & p=Hepatitis%20c%20%2b%20anemia & type=

love

don in ks

From: Keianne <key_adamcomer@...>Subject: [ ] Anemia Date: Sunday, September 27, 2009, 3:23 PM

i'm severely anemic and it's taking a toll on me..i've been told i cannot take iron supplements so what do i do short of a blood transfusion??any suggestions?------------------------------------

[Guest guest]

Why is it important to treat anemia for persons with hepatitis C?

Sustained viral response—In order to achieve a sustained viral response (maintenance of a low level of virus long after treatment has been completed), it is important to treat with a sufficiently high dosage of interferon and ribavirin. Treating anemia allows the patient to continue the combination therapy, as planned.

Quality of life—By increasing hemoglobin levels, patients experience improved energy, activity level, and overall quality of life. Even mild anemia can result in extreme fatigue and can interfere with your ability to work, perform daily tasks, or participate in family and social activities.

How is anemia treated?

Treatment for anemia depends on correctly identifying its cause.

Increase nutrient intake—If you have too little iron, vitamin B12, or folic acid to make your red blood cells work effectively, your doctor will likely suggest that you change the foods you are eating, or take specific vitamins or iron pills.

Improve hemoglobin production—If your anemia is due to too few red blood cells, in selected cases, your physician may prescribe a medication called recombinant erythropoietin, a synthetic form of the naturally occurring hormone that stimulates red cell production

Blood transfusion—If you red cell count falls rapidly too low, you may require a blood transfusion in addition to erythropoietin.

From: Keianne <key_adamcomer@...>Subject: [ ] Anemia Date: Sunday, September 27, 2009, 3:23 PM

i'm severely anemic and it's taking a toll on me..i've been told i cannot take iron supplements so what do i do short of a blood transfusion??any suggestions?------------------------------------

[Guest guest]

there may be a time when

your doctor discusses a separate treatment called

PROCRIT or EPOGEN for the anemia and the side

effects you are experiencing.

PROCRIT or EPOGEN is identical to erythropoietin

(e-RITH-ro-POI-e-tin), the substance your kidneys

normally make. It stimulates your bone marrow

to make new red blood cells. As a result, more red

blood cells can carry oxygen to the body, which

may increase your energy level and provide relief from the symptoms of anemia,

such as fatigue and shortness of breath.

PROCRIT or EPOGEN is available only by prescription. It is an injection given

underneath the skin like the injection of interferon you are already receiving.

Your doctor will tell you what dosage is right for you.http://www.hepfi.org/nnac/pdf/hepc_anemia.pdf--- On Sun, 9/27/09, Keianne <key_adamcomer@...> wrote:

From: Keianne <key_adamcomer@...>Subject: [ ] Anemia Date: Sunday, September 27, 2009, 3:23 PM

i'm severely anemic and it's taking a toll on me..i've been told i cannot take iron supplements so what do i do short of a blood transfusion??any suggestions?------------------------------------

[Guest guest]

http://www.homemademedicine.com/home-remedies-anemia.html

are homemade remidies for anemia:

Home Remedies for anemia #1 It's very important to get the proper nutrients into the body. Eating a diet rich in cereals, rice, pastas, dairy products (milk, yogurt and cheese), vegetables and fruits, meat, poultry and fish, and finally dry beans, eggs, and nuts. Has been proven to help boost the immune system.

there are 6 more tips.

[Guest guest]

WebWarriors links - HCV + Anemia

http://health.dir./group/ /links/009___HCV_and_Anemia_001254083573/

From: Keianne <key_adamcomer@...>Subject: [ ] Anemia Date: Sunday, September 27, 2009, 3:23 PM

i'm severely anemic and it's taking a toll on me..i've been told i cannot take iron supplements so what do i do short of a blood transfusion??any suggestions?------------------------------------

[Guest guest]

Since you are a woman, you did not say how old you are or if you have had any

other conditions such as heavy bleeding or something like fibroids. As a woman,

I do have a rather large fibroid... which they say about 40% or more women have,

and yes... anemia is something I am careful of. Male Docs sometimes forget to

ask that sort of thing? And us " women " tend to make light of it. Just thought I

should throw that in there...

in NH

anemia

If there is someone whom could help me with this short question I would be

forever greatful. I have been cleared? for spinal surgery day after tomorrow.

The late clearance has been due to anemia and possible heart problems. I am

going to go with the fact that the shortness of breath, chest pain and left arm

pain is caused from stress as I have been checked in emergency for this and they

found nothing at that time and my doctor has said no more on the subject.

Now a colonoscopy last week did not find the reason for the anemia and I am

just borderline 11.5 anemic therefore my primary care doctor has cleared me for

the back surgery. Please give me your opinions or hopefully expert advise on

this.

Thanks forever;

[Guest guest]

Hi : I just had spinal surgery 10 weeks ago. In order to have the surgery

I had to get a medical clearance from my primary. He ordered several test as

well as nuclear stress test and echocardiogram, due to changed shown on the ekg.

What was found was 3 small leaks, in 3 valves and a mildly enlarged heart. I

was put on metoprolol a beta blocker to slow down the heart as it was pumping

too fast causing the leaks. I had been having extreme stress for 2 years from

financial losses. The pain from spinal stenosis had been going on for five or

more years and the end result causing massive nerve impingement that epidurals

etc no longer helped. Needless to say the heart problem was scary enough

without the worry of surgery. My doctor cleared me for the surgery so with that

thought in mind I went ahead with it. I am now 10 weeks post op[, take no pain

meds, numbness and pain is gone from my legs. And I didnt have any

complications after surgery. Hope that helps.

Betty in NJ

eedisorderssupportgroup , " mary194320 " <mary194320@...> wrote:

>

> If there is someone whom could help me with this short question I would be

forever greatful. I have been cleared? for spinal surgery day after tomorrow.

The late clearance has been due to anemia and possible heart problems. I am

going to go with the fact that the shortness of breath, chest pain and left arm

pain is caused from stress as I have been checked in emergency for this and they

found nothing at that time and my doctor has said no more on the subject.

> Now a colonoscopy last week did not find the reason for the anemia and I am

just borderline 11.5 anemic therefore my primary care doctor has cleared me for

the back surgery. Please give me your opinions or hopefully expert advise on

this.

>

> Thanks forever;

>

>

[Guest guest]

Betty;

Thanks so much. I am extremely nervous tonight and your words give me some

much needed hope that I am doing the right thing. My surgery is in the

morning.

It sounds like you have been through a lot.

I am ever so thankful for you that you have found some relief.

> >

> > If there is someone whom could help me with this short question I would be

forever greatful. I have been cleared? for spinal surgery day after tomorrow.

The late clearance has been due to anemia and possible heart problems. I am

going to go with the fact that the shortness of breath, chest pain and left arm

pain is caused from stress as I have been checked in emergency for this and they

found nothing at that time and my doctor has said no more on the subject.

> > Now a colonoscopy last week did not find the reason for the anemia and I

am just borderline 11.5 anemic therefore my primary care doctor has cleared me

for the back surgery. Please give me your opinions or hopefully expert advise

on this.

> >

> > Thanks forever;

> >

> >

>

[Guest guest]

Hi : You are so welcome. I understand your nervousness as I was the same.

Remember to follow all your doctors advise and you will be fine. Betty

> > >

> > > If there is someone whom could help me with this short question I would be

forever greatful. I have been cleared? for spinal surgery day after tomorrow.

The late clearance has been due to anemia and possible heart problems. I am

going to go with the fact that the shortness of breath, chest pain and left arm

pain is caused from stress as I have been checked in emergency for this and they

found nothing at that time and my doctor has said no more on the subject.

> > > Now a colonoscopy last week did not find the reason for the anemia and

I am just borderline 11.5 anemic therefore my primary care doctor has cleared me

for the back surgery. Please give me your opinions or hopefully expert advise

on this.

> > >

> > > Thanks forever;

> > >

> > >

> >

>

[Guest guest]

Here is my protocol.

Jeanne Blankenship, MS RD

-------------- Original message from "anne_marquart" <amarquart@...>: --------------

How much iron would you use to treat a pre-op patient with an iron level of 17 and H/H 9,6/30.7? I read the SOARD paper and saw recommendations to prevent iron deficiency, but not to treat it.Thank you!Anne Marquart, MS, RD, LDRoller Weight Loss Institute

[Guest guest]

Has anyone had a problem with anemia. This was one of the first things I noticed

was I got really tired about 6 years ago and was low on iron. I donate blood 4

to 5 times a year so we thought that this was what the issue was. Went on iron

and stopped donating and things went back to normal. I am now anemic again. Had

a colonoscopy with negative results about a year ago.

Arkansas

[Guest guest]

>

> Has anyone had a problem with anemia. This was one of the first things I

noticed was I got really tired about 6 years ago and was low on iron. I donate

blood 4 to 5 times a year so we thought that this was what the issue was. Went

on iron and stopped donating and things went back to normal. I am now anemic

again. Had a colonoscopy with negative results about a year ago.

>

> Arkansas

>

As you can see from my test results, I have no iron problem.

I had an ex-fiancee though that had issues with it for years, and would feel

really terrible.

She slept about 10 hours a day when it got bad.

I know this sounds stupid, but have you ever tried eating liver, or some nice

rare steaks?

[Guest guest]

I admit I am not a big beef eater and never eat liver. I have started an iron

supplement again and stopped donating blood. I gave 4 times in 09 and have not

donated this year since May.

From: marc200134470 <cfs38@...>

Subject: Re: Anemia

Date: Friday, September 10, 2010, 10:40 AM

 

>

> Has anyone had a problem with anemia. This was one of the first things I

noticed was I got really tired about 6 years ago and was low on iron. I donate

blood 4 to 5 times a year so we thought that this was what the issue was. Went

on iron and stopped donating and things went back to normal. I am now anemic

again. Had a colonoscopy with negative results about a year ago.

>

> Arkansas

>

As you can see from my test results, I have no iron problem.

I had an ex-fiancee though that had issues with it for years, and would feel

really terrible.

She slept about 10 hours a day when it got bad.

I know this sounds stupid, but have you ever tried eating liver, or some nice

rare steaks?

[Guest guest]

Yes I have problems with low Ferritin and Iron we don't know why I think it's

Thyroid and my being Hypopituitary.

I started on iron pills taking this brand 2x's a day with 1000mgs of vit C.

http://www.walgreens.com/store/catalog/Minerals/Ferrous-Fumarate-324-mg/ID=prod1\

194792 & navCount=0 & navAction=push-product

http://www.myvitanet.com/supbiocbuf36.html

If you want to read a long story about my battle with Anemia I can bore you with

it.

Co-Moderator

Phil

> From: Dan Meatheany <dmeatheany@...>

> Subject: Anemia

>

> Date: Friday, September 10, 2010, 11:33 AM

> Has anyone had a problem with anemia.

> This was one of the first things I noticed was I got really

> tired about 6 years ago and was low on iron. I donate blood

> 4 to 5 times a year so we thought that this was what the

> issue was. Went on iron and stopped donating and things went

> back to normal. I am now anemic again. Had a colonoscopy

> with negative results about a year ago.

>

> Arkansas

>

>

>      

>

>

>

> ------------------------------------

>

>

[Guest guest]

Dan,....I don't eat liver either, but I know it is high in iron.

I DO eat some nice rare thick steaks though. I started getting grass-fed Bison

though instead of the hormone/anti-biotic filled beef at the grocery store.

WAY lower in fat, and actually contains some omega 3's.

You might want to try some,.....I love the stuff.

[Guest guest]

Don't forget about the foods, etc, that block absorption of iron. Ironically,

spinach contains lots of iron, but also lots of a chemical that blocks iron

uptake, so if you have a spinach salad with your steak, that's not a good

combination. Other things which do the same thing - coffee, tea, red wine,

antacids. Well, you can Google on " inhibit iron absorption " or something

similar and see what's involved.

>

> Dan,....I don't eat liver either, but I know it is high in iron.

>

> I DO eat some nice rare thick steaks though. I started getting grass-fed Bison

though instead of the hormone/anti-biotic filled beef at the grocery store.

>

> WAY lower in fat, and actually contains some omega 3's.

> You might want to try some,.....I love the stuff.

>

[Guest guest]

Here is a link from STTM site this is how I figured out I low on Iron.

http://www.stopthethyroidmadness.com/ferritin/

Co-Moderator

Phil

> From: Barb <baba@...>

> Subject: Re: Anemia

>

> Date: Friday, September 10, 2010, 11:38 AM

> Folks that are hypothyroid have a

> hard time retaining iron and tend to be anemic.

>

>

> >

> > Has anyone had a problem with anemia. This was one of

> the first things I noticed was I got really tired about 6

> years ago and was low on iron. I donate blood 4 to 5 times a

> year so we thought that this was what the issue was. Went on

> iron and stopped donating and things went back to normal. I

> am now anemic again. Had a colonoscopy with negative results

> about a year ago.

> >

> > Arkansas

> >

>

>

>

>

> ------------------------------------

>

>