Polycythemia?

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Polycythemia?
« on: August 09, 2012, 01:51:27 AM »
A very long story short I was diagnosed with thal as a child and was more than fine until about 3 years ago. I went from being able to work out, do mma then go to gymnastics and still feel fine every day to getting dizzy spells, temperature would go from 86 something to 101 almost daily. Fingers, feet and face would burn red, I gained 20 lbs in 1 month despite working out (I was a personal trainer so I was moving around all the time and eating very well), headaches, vision problems, trouble breathing...the list goes on and on. So right now my hematologist and I are wondering about polycythemia. I have high rbc and hemoglobin, slightly enlarged spleen and high b12 even tho I was not on a multi and my "nutreval" came back that I'm deficient in every other b vitamin. Andy or anyone else can you please chime in and help? I'm going crazy with this 360 in my health. I've even had to quit my job because I am so weak now. My JAK2 test came back negative I think but my doctor still thinks I have this and is going to draw my bone marrow in 2 weeks.

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Offline Andy Battaglia

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Re: Polycythemia?
« Reply #1 on: August 10, 2012, 02:39:38 AM »
The B-12 test can be affected by hemolysis, the breakdown of red blood cells, which is characteristic of thalassemia.
http://www.nlm.nih.gov/medlineplus/ency/article/003705.htm
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Rupture of some of the red blood cells (hemolysis) in the blood sample may affect test results.

I would suggest re-testing for B-12 before doing a bone marrow biopsy. Since you tested low in all the other B vitamins, it is very possible that your symptoms are a result of deficiency. I normally suggest thal minors take a B Complex 100 daily, as hemolysis depletes certain vitamins and minerals.

Testing for polycythemia would show the following. Do you know what your hemoglobin or hematocrit level is? (Elevated RBCs are normal in thal minor, so that level suggests nothing more than minor).
http://www.mayoclinic.com/health/polycythemia-vera/DS00919/DSECTION=tests-and-diagnosis
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An increase in the number of red blood cells and, in some cases, an increase in platelets or white blood cells.
Elevated hematocrit measurement, the percentage of red blood cells that make up total blood volume.
Elevated levels of hemoglobin, the iron-rich protein in red blood cells that carries oxygen.
Very low levels of erythropoietin (EPO), a hormone that stimulates bone marrow to produce new red blood cells.
Andy

All we are saying is give thals a chance.

Re: Polycythemia?
« Reply #2 on: August 10, 2012, 03:42:24 PM »
Andy thank you for your response. I did have my b12 retested and every time its in 1800's. I asked for my blood tests the last time I left my hematologists office but the receptionist only gave me copies of my "nutreval" vitamin test and my ferritin. Do you want me to post those? He keeps saying hes worried because my hemoglobin is high but didnt't tell me a number. I will get those levels when I go back to see him in 2 weeks but that's when I'm getting the bone marrow test done. I just don't understand how within one month my health could deteriorate that quick. Is that normal for a thal? And also is the extreme weight gain within 1 month normal for a thal? Oh something else I saw in one of the other posts is that you wonder if there is a connection between hypothyroid and thal. I was diagnosed hypothyriod about a year ago (the reverse kind so I shouldn't take t4 levothyroxine) and am on cytomel and still haven't lost weight. I don't understand what is going on and overwhelmed because I don't have hope that this will ever get better. If the bone marrow test shows nothing is there any treatment for the high rbc and hemoglobin? My hematologist said the treatment for polycythemia is just to do phlebotomy. Would it make sense to that for thal to remove excess "sludgy blood" (as my other dr calls it) to reduce symptoms?

 

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