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Hemoglobin E disease, low levels. advised to take nutritious food to increase Hb levels. CT scan, MRI done, no cancer detected. Treatment for low levels ?

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My mother is 65 years old and presently suffering from Haemoglobin E disease(E/E) and present haemoglobin level is 7. In jan'2011, it was 9.8. Her weight has drastically reduced from 65 kg to 47 kg in last 10 months. Doctors have advised to take nutritious foods to increase Haemoglobin level. But no improve in weight gain and also Haemoglobin level. Also done CT scan, MRI etc. and no cancer is detected.
Please advise what to do next.
Posted Sun, 15 Apr 2012 in Blood Cancer(Leukemia)
Answered by Dr. Robert Galamaga 6 hours later
Hello and thanks for the query,

In the setting of Hemoglobin E disease in a homozygous carrier of the gene, hemolytic anemia is very common and can require periodic transfusion.

I am sure no cancer is present but also she must feel weak especially when the hemoglobin level falls below 8.

Thanks for providing the historical information including previous laboratory results. This gives me a good picture of the relative stability of her hemoglobin.

In order to support her hemoglobin level and minimize hemolysis or destruction of the red cells she should focus on a diet XXXXXXX in fruits and vegetables with adequate Vitamin B12 and Folic acid. Maintaining a healthy exercise regimen and low stress level is also essential.

This can be a debilitating illness and sometimes the spleen will grow in size and press on the stomach. In pressing on the stomach it may diminish the appetite which may explain the weight loss. This is something that should be discussed with her primary physician who may consider some high protein supplements or possibly an appetite stimulant.

Thank you again for submitting the query. I hope this response has served to be helpful. If you have additional concerns I would be happy to address them here.


Dr. Galamaga
Above answer was peer-reviewed by
Follow-up: Hemoglobin E disease, low levels. advised to take nutritious food to increase Hb levels. CT scan, MRI done, no cancer detected. Treatment for low levels ? 18 hours later
Thanks a lot for your reply.

Test for spleen has already been done and result was negative.
Now the doctors here have suggested to do a whole body PET scan to exclude malignancy/Cancer. Is it normal practice or is there any chance detect cancer by PET scan?

But she is very disturbed and under tremendous stresses because she is not gaining weight & no improvement in hemoglobin level. How to make her stress free. Should we take her to a Psychiatrist. Please advise.
Answered by Dr. Robert Galamaga 4 hours later
Hello and thank you for the follow up question.

I think at this point it is reasonable to consider performing a PET scan. These scans are very highly sensitive scans which can in fact pick up any abnormal cellular activity including cancers.

Regarding her appetite. There are some appetite stimulants which can in fact work very well for patients in the same situation. There is one medication which comes to mind called Megace. This medication doesn't work sometimes very well but does have some side effects, which your doctor will monitor.

Regarding the low hemoglobin this is something which will be a chronic problem. I am afraid there are no certain solutions to this because if she is dealing with a genetic abnormality which can get more difficult to manage with age. Transfusions are readily available and she will be able to obtain these under the supervision of her primary physician.

I completely understand the fact that she is under a significant amount of stress in dealing with quite a bit of anxiety. I think the first practitioner that she should talk to would be a psychologist. A psychologist is specially equipped with tools which allow them to help patients cope with certain situations without the need for medication. If she does need some medication to control anxiety. Her psychiatrist just yet.

I thank you again for submitting your question. I hope you found my response to be helpful and informative. If you have any additional concerns I would be happy to address them.


Dr. Robert
Above answer was peer-reviewed by
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