Hey guys, 10 months post spelectomy, interesting update

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Offline CUSO

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Hey guys, 10 months post spelectomy, interesting update
« on: December 19, 2013, 08:48:00 PM »
Ok, it has been a rollercoaster over the past few months. I had a good 3 months then 2 months ago my liver started hurting badly. I had fatigue bad and was kind of dizzy and out of it. Well they did a liver biopsy, and liver did not have disease, but it showed it was inflamed due to my liver overproducing blood. The hematologist then thought Polycythema, then he did a bone marrow biopsy and it was perfect. I have 4 Hematologist/oncologists involved with my case and they are pretty sure my thalassemia is the cause of my liver soreness. They are completely puzzled that My mother, grandfather and me all have thal B and have had to have spleens removed, my younger brothers spleen is getting big and soon he will have to have it removed. I think they are going to do a study on my family because it is unheard of in Thal B that so many family members get splenectomies. Also, my mother overproduces blood in her liver and is on blood thinning medication. I am not sure what is going on in my body, I am not diseased and I don't have cancer, but liver soreness and fatigue are taxing me. My platelets are 750 today. partly because my liver is overproducing blood. I only feel bad that my 3 year old daughter has the same thal as I do... that is why I am doing all these tests, so maybe they will find out what is going on and can take care of her earlier.

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Offline Andy Battaglia

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Re: Hey guys, 10 months post spelectomy, interesting update
« Reply #1 on: December 19, 2013, 10:56:55 PM »
It sounds very much like you have extramedullary hematopoiesis (EH) taking place in your liver, and this is also a reason why spleens are sometimes removed. The EH is the body's attempt to grow red blood cells outside the bone marrow and this can take place anywhere in the body, most often in the abdominal cavity, but it can take place anywhere, even within cells. This is much more common in intermedia thals who do not transfuse, but it is also found in majors who are under-transfused and occasionally it occurs in thal minors. I know one minor who has a growth of red blood cells that measured 18 cm and pressed so hard on her lungs that it caused an asthma-like condition because her lungs could not expand fully. Doctors may not hear much about this, but in my role here, I have heard reports from thal minors who do have EH and from those whose spleens became so enlarged that they needed it removed, so it is a problem for some thal minors, and probably far more than is known because most cases go un-diagnosed. In majors, this is treated by raising the Hb with transfusion and sometimes the drug, hydroxyurea is used to try to reduce the amount of blood being produced outside the bone marrow. My only advice is to do everything you can to keep your Hb level up. Wheatgrass and resveratrol should be tried for at least one year to see if your Hb will rise. Folic acid should be taken daily. Talk to your doctors about EH. They may not be aware that it does sometimes occur in minors, but that is exactly what happens. Red blood cells grow outside the bone marrow, and in your case it's in your liver. The main danger from these masses are when they cause great pressure on the spine or organs, but this is usually with masses growing in the abdomen.
Andy

All we are saying is give thals a chance.

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Offline CUSO

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Re: Hey guys, 10 months post spelectomy, interesting update
« Reply #2 on: December 20, 2013, 01:06:37 PM »
Thanks for the reply. Will these supliments increase my plstelets? I am at 750 now and csnt afford an increase. Also, if my liver is producing too much blood, how will increasing my Hb help? Thanks. Also, I do take testosterone, I think it may hsve something to do with this, but I need it because my T is quite low. Any info about thal and testosterone replacement? Unfortunatley for me, all of the people with thal in my amily still living are women so I have nobody to ask.

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Offline Andy Battaglia

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Re: Hey guys, 10 months post spelectomy, interesting update
« Reply #3 on: December 20, 2013, 02:49:15 PM »
The reason EH takes place is low Hb. The higher your Hb, the less EH will take place. I would also suggest taking natural vitamin E, as it is a powerful antioxidant and a mild blood thinner.
Andy

All we are saying is give thals a chance.

 

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