Transfusions Raising Hb but not Relieving Symptoms.Cardiovascular? Inflammation?

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Offline Valkyria

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I've had 3 transfusions now of 2 units packed rbcs, 3-4 weeks apart. They seem to relieve my symptoms for no more than 3-5 days. My hb has been 60-70g/l for the past 2.5 yrs, with symptoms of excessive fatigue, shortness of breath from minor exertion (vacuuming, climbing stairs), palpitations, lightheadedness, and a few fainting episodes. Prior to about mid 2009, I had few mild symptoms and an hb of 70-80. 
At first I thought antibodies were causing my hb to drop back to baseline, but this is not the case: pre-transfusion hb for 2nd transfusion was 75, and most recently 84.

My heamatologist said that if transfusions did not help my symptoms were probably of cardiovascular origin; this was after I had an specialized echocardiagram with pulmonary hypertension screening in September ordered by him. However the echo showed my heart to be pretty much normal and healthy with a few trivial exceptions - Mildly dilated left atrium. Evidence of possible anterior leaflet mitral valve prolapse, with trivial mitral regurgitation and slightly thickened mital valve leaflets. Tricuspid regurgitation with a TR jet velocity of 2.5m/sec (upper limit of normal) - does any of this sound significant enough to cause symptoms? 

Prior to transfusions, the heamatologist also said that my retic count low and not showing adequate response for an hb of 60-70 which could be due to an inflammatory condition - would this also explain my symptoms?
« Last Edit: November 26, 2011, 10:43:42 PM by Valkyria »

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Offline Andy Battaglia

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  • Will thal rule you or will you rule thal?
You once mentioned that you had genetic testing done. Do you know what your specific beta thal mutation you have? I would like to investigate that to see if it is one known to cause an anemia more consistent with thal intermedia than minor, or if there are other known interactions. And are you taking L-carntine, L-arginine  or L-citrulline? If mild PHT is involved, these may offer some help, although anecdotal evidence tells me that it may take some experimenting to find which one is best suited for an individual.
Andy

All we are saying is give thals a chance.

 

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