a new tactic with my doc........

As I was reading thru some older post, it amazed me just how illogical the medical community can be.  Like so many here, I was tested for BTM because of SYMPTOMS , but now that the doctors have confirmed I have BTM, all of a sudden none of my symptoms can be related to BTM  Instead, they think it is more logical to label me with multiple illnesses (chronic pain and fatigue syndrome, fibromyalgia, migraines, depression, poor circulation, clotting problems, "sticky" platelets, low blood pressure, palpitations, pulm hypertension, weak immune system, etc)  How can one person be so unlucky?  ???sn't it more logical to assume there is ONE underlying problem causing or making me prone to all these other issues?   :dunnoI'm going to try a new tactic.  It would be far more productive if my doctor could at least approach it this way:  IF BTM was symptomatic, what would that look like?  Just for arguments sake, let's start with the assumption, whether you believe it or not, that btm IS the problem.  How COULD btm explain everything?  IF btm  is the problem, what's the best way to treat it?  My doctor doesn't have to believe in btm as the cause, but she does have the medical knowlege (and the power of the prescription pad and insurance access) to help me live a better life.  As long as the "treatment plan for btm" causes no harm, I see no reason (except arrogance) why the doctor shouldn't humor me and "treat the btm" and see if all these other problems improve (or at least not get any worse).

I feel your frustration. I was just diagnosed with thal, and it took me going to several doctors to get them to even order the test. Thankfully, I now have a doctor that is willing to order me the tests that I request and to work with me to help me live a better life. I was misdiagnosed and felt like a guinea for the past year trying to get a diagnosis. Some of which I think caused more damage than good to my body. I got the fibromyalgia, chronic fatigue, and central sensitization syndrome diagnoses that were all wrong and was even told to just go on disability.   If your doctor is not willing to help you live a better life, then it is time to find a better doctor. It might take a while but its worth it.

With most doctors, you will get nowhere by attributing your symptoms to thal minor, even though there are two studies showing minors do have symptoms. In many cases it may be best to pursue relief for the symptoms without presenting it to your doctor in the context of thal minor, because unfortunately, many doctors will immediately assume it's all in your head once you mention thal minor. This is a terrible situation and frankly a shame on the medical industry, but you have to take a real world approach, so unless your doctor is one of the rare ones who accept that thal minor is symptomatic, it is best to talk symptoms and not thal minor.

Yeah ..
Just going through the posts and watching what happens
I also was a guinea pig before ...
But my doctor knows that taking some very strange symptoms I was a pretty healthy person.
I was tested for fibromyalgia and artrytes before but since I'm vegan person I don't have inflammation on my joints they just ache .... I was all negative for this things  I do have a lot of fatigue that goes always back to " anemia "  that actually is not ......so when my doctor asked me if I believed that everything I was feeling was related to my alpha that minor homozygous - 3.7 I said boldly yes I do believe ! I wasn't showing up there much because I don't want to bug him with my complaints and I was giving all my complaints to my naturopathic doctor that is my thalassemia doctor ,he knows what I'm going through, however here in the USA has somethings that just a Medical doctor haas authority to prescribe. I have been too tired too often to be able to functioning as mother as wife as housewife as worker and at this point I'm feeling bad again . I don't want just to leave my job but I'm facing challenges .after work I cannot do much at my home . I  work just to go back home to be laying down even on my days off.....    if my doctor mentions disability I think I will take it like that I can still help at home with some money and see if I can still have insurance to keep my treatments .Craziness ...I never though about it before ...