I'm new here , and pleased to have found this site.

Hello to everyone.  I am a 48yo male that has been suffering the symptoms I read about here for years, but recently they have gotten worse.   I found out I had Thalassimia about 20 years ago when my sons were diagnosed and I was tested as a result.   I assume I have thalassimia minor after reading the symptoms online on the medical web sites and the postings here.  I am not sure which combination I have for sure.  I started looking after I recieved my blood tests today and my HGB and MCV were found to be low and my RDW,RBC was high.  I was reminded that I had it, and although I never considered thalassimia as a cause of my fatigue, narcolepsy and various un-determinable abdominal and side aches, now see how I share many of the symptoms you all have described.  I was diagnosed as type 2 diabetic 2 years ago, and as a child age 5 in Greece suffered from hepetitus.  Lately I had a CT scan which showed a walnut sized CYST in my spleen, but nothing was detected when they looked at it with ultrasound.  I am wondering if deposits of iron can show up on the CT but not the ultrasound.  Because of upper back pain and pain in left side in the area of my kidney, I will be having an MRI in the next few weeks.  THis is my second episode in 7 years that they strongly felt I had kidney stones, but all tests show none.  I also was exhibiting all the symptoms of shingles on my back, except there was no rash, fever or visible signs.  My doctor has been stumped as I have since I have been fighting aches and pains so bad that I would come home at the end of each day and pass out lying on my back to eleviate the pain.   Any thoughts or experiences that you all could share would be great.   I will have my doctor check my iron levels.  Does anyone have experience asking to have their DNA checked to see what combination they have?  Would it be unreasonable to ask that of my doctor?    I look forward to hearing from anyone that can help. 

 I read about Lisa and wanted to add a final note that even though I am new here, I appreciate the gift that she left for me to find, it sounds like she was a great human being. 

Hi Nick and welcome to our group,

If you have had chronically low Hb levels for many years I would suggest that you have the possibility of extramedullary hematopoiesis investigated. When the bone marrow cannot produce enough good red blood cells, masses sometimes grow in the body that will create red blood cells to supplement what the bone marrow is producing. These masses are called extramedullary hematopoiesis and they are frequently found in the abdominal cavity, where they are sometimes attached to organs, liver and spleen in particular. In addition, these masses can cause moderate to severe pain because of pressure they exert on the spine. When they press on the lungs, breathing can become difficult.

The reason I bring this up is because of the pain you have experienced. Your doctor may not be aware of the realtion between thalassemia and extramedullary hematopoiesis, so it should be brought to his attention and if it is a possibility, diagnostic tests should be done. This is sometimes treated with either blood transfusions, which reduce the growth of the mass, or chemotherapy, such as hydroxyurea, which can shrink the mass, relieving the pressure that is causing the pain. In extreme cases, surgery may be required to remove the mass. You may need to see an experienced thal-familiar hematologist to diagnose whether this is the problem

 hi greekboy! WELCOME!Feel free to ask and surely everyone will pitch in for the answers to your questions.......... Do take Care!

Hello Greekboy,


 

ZAINI.