Discussions By Condition: I cannot get a diagnosis.

Blood Disorder

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: redsonya1201
  • January 22, 2010
  • 08:20 PM

My mom(65) has been sick now since July 2009 with severe anemia. She's had several blood transfusions in the past few months. She is unable to keep her red blood cells up and doctors don't know where the blood is going. She does have a B12 issue where her body doesn't obsorb it correctly(had a shot of that and folic acid and now takes folic acid everyday). Doctors told her she suddenly had diabetes...she never eats bad, doesn't eat red meat, eats all kinds of veggies and is barely overweight. They told her that her thyroid is underactive, so she takes meds for that now and takes meds for diabetes. She also takes meds for a stint that was put in due to heart disease. She has high blood pressure and takes meds for that, but that has come down alot since she started having all these blood problems. She now can hardly walk without having to stop to breathe, sometimes can't get out of bed due to the fatigue she has daily. Has pain everywhere. Has been told she had hepatitis B before, but has no idea how that could have happened. And recently had a bleeding ulcer in her stomach. Has cataracs suddenly worsening, which don't help with her unstableness in walking. My mother was totally fine before July 2009 and now she is going downhill quickly. Dr. told her it could be 3 blood disorders/diseases including leukemia! Does this sound familiar to anyone? Any information is helpful. Thank you.:confused:

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  • I just want to tell you that if she started taking thyroid medicine only now last summer, she may still need more time to see substantial improvement. Usually you can see improvement in a month or so, but can be also 6 months. She should take her thyroxin every day (really, EVERY day) at least 20' BEFORE breakfast. She should also have another test done to see how well her dosis compensates her hypothyreoidism.Also anemia may need some more time. Is she also taking iron? I was once diagnosed with severe anemia, got iron supplements prescirbed, and after 3 weeks of using it was diagnosed with extreme gastritis and ulcers...depending on the form in which the iron is supplied, it can be pretty nasty to the digestive tract, which makes absorption even worse. (iron in the form of sulfate tends to irritate)
    Anonymous 42789 Replies
    • January 23, 2010
    • 10:53 PM
    • 0
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  • My mom(65) has been sick now since July 2009 with severe anemia. She's had several blood transfusions in the past few months. She is unable to keep her red blood cells up and doctors don't know where the blood is going. She does have a B12 issue where her body doesn't obsorb it correctly(had a shot of that and folic acid and now takes folic acid everyday). Doctors told her she suddenly had diabetes...she never eats bad, doesn't eat red meat, eats all kinds of veggies and is barely overweight. They told her that her thyroid is underactive, so she takes meds for that now and takes meds for diabetes. She also takes meds for a stint that was put in due to heart disease. She has high blood pressure and takes meds for that, but that has come down alot since she started having all these blood problems. She now can hardly walk without having to stop to breathe, sometimes can't get out of bed due to the fatigue she has daily. Has pain everywhere. Has been told she had hepatitis B before, but has no idea how that could have happened. And recently had a bleeding ulcer in her stomach. Has cataracs suddenly worsening, which don't help with her unstableness in walking. My mother was totally fine before July 2009 and now she is going downhill quickly. Dr. told her it could be 3 blood disorders/diseases including leukemia! Does this sound familiar to anyone? Any information is helpful. Thank you.:confused:I feel so bad for your mom!! I am now 61 and was diagnose with severe anemia in Feb. 2008 at the age of 59. I have never been sick with anything like this in my life. At that time I thought I was just fatigued from the passing of my husband In Oct. 2007. I had to have 7 units of blood in Feb.08. From Feb. of 2008 I have had many, many, transfusions until this day. I was hospitalized for two weeks at that time in Feb. 08. They did not know where my blood was going. I left the hospital and 4 days later ended back up in the hospital again with pneumonia and shingles and low blood again. I was in there 7 more days. They did do a bone marrow biopsy and found that I had low grade Leukemia. The doctors said that the Leukemia was not active and was not the cause of my anemia. I changed doctors and when to and Hematologist - Oncologist and took all of my medical records to that point. The new doctor did another bone marrow biopsy to make sure my blood lost was not from the low grade Leukemia. They also told me it was not from the Leukemia. The doctor started me on B12 shots for 6 months. My blood level went back up to 11.4 and stayed there for all that time I was taking the B12 shots. They quit giving me the B12 shots and then in June of 2009 I started to freeze again, couldn't breath, and was so fatigued that I could not walk from one room to another without the assistance of my son. I knew the symptoms so well and knew it was starting all over again. I went back to the doctor and again she was mystified with my symptoms again. They thought I was having Hemolytic Anemia, but it didn’t have the rest of the numbers to prove that it was that. So I was referred to a Specialist in Dallas, TX and my doctor told this new doctor that she thought I had Hemolytic Anemia but the rest of numbers didn’t prove I had this. Well here we go again!!! This new doctor put me through test and couldn’t find out what it was. He then also concluded that he thought I had Hemolytic Anemia and what is called (Cold Gluten) the actual name is longer than that… they just cut it short. The Cold Gluten causes your red blood cells to clot together when you are cold and then the white blood cells thinks it is an infection and destroys my red blood cells and makes me Anemic. This happened in June (summer) not in (winter) like Feb. 08. This new doctor has put me through 5 months of Chemo and wanted me to do 6 months cause he thought it my destroy some of my white blood cells to where it would not attack my red ones any more. Now my blood has dropped again and I need transfusions. I said enough is enough and I refused to do any more Chemo because it has not helped. I am so depressed and frustrated that they do not know what is wrong with me and can not tell me where my blood is going and they only are mystified at my condition and I continue to loose blood and need transfusions. This continuous lost of blood is putting a strain on all of my other organs and causing other medical conditions. I now will have to search for another Hematologist out there somewhere, that might have a patient like me, and that might know what I have before I pass away with mystery killing me. I hope they find the cause of your mothers blood loss!!! Thank You for listening, Lee
    Anonymous 42789 Replies
    • February 4, 2010
    • 05:54 AM
    • 0
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  • I feel bad for your mom that she is going through similar condition as I!! I am now 61 and was diagnose with severe anemia in Feb. 2008 at the age of 59. At that time I thought I was just fatigued from the passing of my husband In Oct. 2007. I had to have 7 units of blood in Feb.08. From Feb. of 2008 until to day, I have had many, many, transfusions. I was hospitalized for two weeks at that time in Feb. 08. They did not know where my blood was going. I left the hospital and 4 days later ended up back in the hospital again with pneumonia and shingles and low blood again. I was in there 7 more days. They did do a bone marrow biopsy and found that I had low grade Leukemia(CLL). The doctors said that the Leukemia was not active and was not the cause of my anemia. I live in a small town in Texas. I changed doctors and went to and Hematologist - Oncologist in a near by city and took all of my medical records to that point. The new doctor did another bone marrow biopsy to make sure my blood lost was not from the low grade Leukemia. She also told me it was not from the Leukemia. She started me on B12 shots for 6 months. My blood level went back up to 11.4 and stayed there for all that time that I was taking the B12 shots. I also had to take folic acid everyday. They quit giving me the B12 shots and then in June of 2009 I started to freeze again and was so fatigued that I could not walk from one room to another without the assistance of my son. I had blurred vision again. I knew the all of the symptoms so well and knew it was starting all over again. I went back to the doctor and they were mystified with my symptoms again. She thought I was having Hemolytic Anemia, but it did not have the rest of the numbers to prove that it was that. So I was referred to a Specialist in Dallas, TX and my doctor told this new doctor that she thought I had Hemolytic Anemia but the rest of numbers did not prove I had this. Well here we go again!!! This new doctor put me through test and could not find out what it was. He then also concluded at last, that he thought I had Hemolytic Anemia and what is called (Cold Gluten) the actual name is longer than that… they just cut it short. The Cold Gluten causes your red blood cells to clot together when you are cold and then the white blood cells thinks it is an infection and destroys my red blood cells and makes me Anemic. This happened in June (summer) not in (winter) like Feb. 08. This new doctor has put me through 5 months of Chemo and wanted me to do 6 months because he thought it might destroy some of my white blood cells to where it would not attack my red ones anymore. Now my blood has dropped again and I need transfusions. I said enough is enough and I refused to do any more Chemo because it has not helped. I am so depressed and frustrated that they do not know what is wrong with me and can not tell me where my blood is going and they only are mystified at my condition, and in the mean while, I continue to loose blood and need transfusions. This continuous lost of blood is putting a strain on all of my other organs and causing other medical conditions. I now will have to search for another Hematologist out there somewhere, that might have a patient like me, and that might know what I have before I pass away with mystery killing me. If they have not done a bone marrow biopsy on your mom, you may suggest it to be done. I have had two and they are not pleasant, but at least it can rule out Leukemia.I hope they find the cause of your mothers blood loss!!! Thank you,clomaleeI am a Newbie, sorry if my answer to your post ends up twice! I didn't know how to post a reply the first time. I tried and did not see it under yours so I read on how to do it... and reposted.clomalee
    clomalee 1 Replies
    • February 4, 2010
    • 07:06 AM
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