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Frequent Contributor
Posts: 116
Registered: ‎11-05-2017

Anemia Diagnosis

Hi. I'm not really asking for advice on what to do next, but just fill like I have to vent. I tend to keep things to myself, but my husband has been super supportive.

 

Two Mays ago, my internist told me my iron levels were low, 10,  and it was imperative that I see if I was bleeding internally. It scared me so much, I almost gave up a trip to Savannah.

 

So, first to the gynecologists which included a cervical biopsy, and later a D&C for a thick lining of my uterus. No cancer. The biopsy, in the office, hurt like hell. Two ultrasounds before the biopsy. No bleeding. Nothing.

 

Then I go to a Hematologist. A "gazillion" vials of blood taken. He suggests iron infusions. One week of infusions, and my level goes up to 11.0. He also suggests I see a gastroenterologist. One colonoscopy, two endoscopies, and two capsule endoscopies later, no sign of bleeding.  And my iron is now down to 9.5.

 

Scheduled to see the hematologist in October. He said 3 months from last appointment, but not sure I should wait that long. I think I might need another run of iron infusions, but not sure anymore. I've have never had anemia before in my life.

 

I've seen some very old posts on anemia. Some talked about eating ice. I DO tend to do that. I'm not sure if it's a recent thing though. I am thinking I need to call the hematologist and make an appointment to see him sooner. I'm feeling frustrated. I've said yes to all the test, and have been very cooperative. There were times I've felt like a human guinea pig. I hear that also happens when you are on Medicare. (a little paranoid, I know)

 

As I've said, I'm just really venting. I normally don't talk about my bodily functions. Thanks for listening. 

 

 

Honored Contributor
Posts: 17,186
Registered: ‎07-03-2013

Re: Anemia Diagnosis

Go with your gut, move up your Dr appointment.  I had anemia when I went through chemo.  I remember all too well how it made me feel.  I was around 6.  Ask the Dr if adding iron rich foods to your diet will help.  Good luck getting some answers.

Esteemed Contributor
Posts: 5,932
Registered: ‎03-09-2010

Re: Anemia Diagnosis

[ Edited ]

@Addie2118 wrote:

Hi. I'm not really asking for advice on what to do next, but just fill like I have to vent. I tend to keep things to myself, but my husband has been super supportive.

 

Two Mays ago, my internist told me my iron levels were low, 10,  and it was imperative that I see if I was bleeding internally. It scared me so much, I almost gave up a trip to Savannah.

 

So, first to the gynecologists which included a cervical biopsy, and later a D&C for a thick lining of my uterus. No cancer. The biopsy, in the office, hurt like hell. Two ultrasounds before the biopsy. No bleeding. Nothing.

 

Then I go to a Hematologist. A "gazillion" vials of blood taken. He suggests iron infusions. One week of infusions, and my level goes up to 11.0. He also suggests I see a gastroenterologist. One colonoscopy, two endoscopies, and two capsule endoscopies later, no sign of bleeding.  And my iron is now down to 9.5.

 

Scheduled to see the hematologist in October. He said 3 months from last appointment, but not sure I should wait that long. I think I might need another run of iron infusions, but not sure anymore. I've have never had anemia before in my life.

 

I've seen some very old posts on anemia. Some talked about eating ice. I DO tend to do that. I'm not sure if it's a recent thing though. I am thinking I need to call the hematologist and make an appointment to see him sooner. I'm feeling frustrated. I've said yes to all the test, and have been very cooperative. There were times I've felt like a human guinea pig. I hear that also happens when you are on Medicare. (a little paranoid, I know)

 

As I've said, I'm just really venting. I normally don't talk about my bodily functions. Thanks for listening. 

 

 


@Addie2118   I had IDA, which is what you have.  My iron was almost undetectable it had gotten so low.  I got iron infusions weekly until mine came up to 9 and my doctor insisted I eat iron-loaded foods. 

 

You did not ask but telling you what I do in the interim.  I make soups with marrow bones and use the broth from same when cooking vegetables instead of butters or oils.  I eat chicken livers at least once per week.  When I cook chicken, I save the broth for other dishes because it has more iron than what you buy on the shelf.  Freeze it and use it.  I do fine and rarely now do I need an infusion. 

 

I see my hematologist every 3 months.  Just saw him 2 days ago and all checked out fine. I seem to be stable at this point and I think my diet has saved me from so many infusions.

 

There may or may not be a need in moving your appointment up.  Call the staff and ask them.  They can ask your doctor for you.  I am due for an endoscopic/capsule and colonoscopy because I recently had diverticulitis so I get one earlier than required by the protocol.

Honored Contributor
Posts: 10,337
Registered: ‎03-10-2010

Re: Anemia Diagnosis

 

Hi @Addie2118 ,

 

I spent 5 weeks in the hospital in 2008 with a bleeding colon. My Hemoglobin reading started at a low 6.9mgdl. Needless go say that is serious Anemia. They knew my colon was bleeding, as did I when I saw blood in the toilet.

 

During that stay I had 6 Colonoscopies(2 with no anesthesia), also swallowed the "camera pill", still could not find the bleed. Had at least 20 units of blood transfusions, along with several Iron Infusions.

 

Was transferred to another hospital that had the equipment to do 2 Double Balloon Enteroscopies, 1 lower/1 upper. The lower(same place as Colonoscopy) took over 4 hours, but they found the bleed.

 

I suffered from Anemia for 7+ years and during that time I  had over 130+ blood transfusions. Today? Total number of Colonoscopies? That would be 15. Total number of Double Balloon Enteroscopies? That is 5. Iron Infusions? Over 30, had 2 of them about 2 months ago.

 

While in the hospital I had multiple tubes of blood drawn every 8 hours, mainly to check my Hemoglobin and my Iron Ferritin readings. I understand your issue and can personally emphasize with you.

 

I believe your Hemoglobin Readings are the numbers(7.0/9.5) not your Iron Readings. Hopefully they find your issue and you are not Anemic as long as I was for over 7 long years.

 

I have also had over 30 Endoscopies. Have to get one annually because of my Barrett's Esophagus. I just took/take it all in stride and move along with my life.

 

Wishing you my best,

 

 

 

hckynut(john)

 

Esteemed Contributor
Posts: 6,562
Registered: ‎06-25-2012

Re: Anemia Diagnosis

I suffered with a horrible case of anemia years ago after I had an ulcer. I was mysteriously craving ice all the time! But the worst ordeal was my extreme sore tongue. It was just horrible. At that time, my doctor couldn't figure out what was going on until he finally took a complete blood test. Yup, there ya go, I was severaly anemic. He put me on over the counter ferrous sulfate tablets and my anemia was cured. I was so greatful for ferrous sulfate! I feel for you OP, anemia is not a fun thing to have. 

"Pure Michigan"
Valued Contributor
Posts: 593
Registered: ‎03-30-2012

Re: Anemia Diagnosis

@Addie2118

Do you take anything for acid reflux like Prilosec or Prevacid? I think long term use of them can mess with your iron. I wish you well.😊
Frequent Contributor
Posts: 116
Registered: ‎11-05-2017

Re: Anemia Diagnosis

No, I don't take any of those things. Thanks for your kind thoughts.

Frequent Contributor
Posts: 116
Registered: ‎11-05-2017

Re: Anemia Diagnosis

I've been considering taking the ferrus sulfate. Did it make you constipated? It was once suggested to me, but not by my doctor. Thank for repsonsidng. I was just feeling so down last night with all this. 

Frequent Contributor
Posts: 116
Registered: ‎11-05-2017

Re: Anemia Diagnosis

Hi John, 

 

You've been through it too!  I will most likely move up my doctor's appointment. Take care.

Frequent Contributor
Posts: 116
Registered: ‎11-05-2017

Re: Anemia Diagnosis

Interestlngly enough, my doctor has not talked about what I need to add to my diet. I wish doctors were trained more in this aspect. I'm going to do some research on iron rich foods.

 

The endoscopic capsule isn't bad, but the first time, the battery died, and this is why I had two of them. Good luck on your capsule endoscopy.