Posted by spoc on April 12, 2004, at 11:04:39
In reply to spoc, posted by Jaynee on April 11, 2004, at 12:26:25
......"D" as in "Doubting," that is -- Dr. Doubting Thomas. Just got off the phone with him. His family tree is extensive, you know, and many of them go into medicine. You've probably met with one of his relatives yourself at some point.
Oh, don't mind me, I'm just indulging frustration. I wouldn't want a doc who gave me no direction and was willing to create a nasty looking and expensive medical record for my present insurance company and any future ones to go on either. I have to weigh what tests to insist on especially carefully, since I have an independent policy, which in itself throws one to the lions. But it is also with a company I had planned to switch from someday (but it can’t happen soon, it’s diabolically hard to gather firm evidence and opinions on what companies you can “trust” long term with* independent* policies). Also, I pay for all lab tests myself under this plan. So, it’s very difficult for me to decide whether it's worth it in any particular case to override discouragement from a doc about certain tests.
Anyway, to the phone call with my new 'teenage' GP (not really named Thomas. Who has met me only once for a 30 minute history, and has seen no prior medical records on me). Surprise surprise, it was discouragement city. Of course I admit I only have a cursory grasp of hemochromatosis at this point. But nothing about the early signs doesn’t fit, except that basic thyroid tests have been clear.Jaynee, from your experience in helping people realize they should keep hemochromatosis testing in mind, have you found that 1] if a female does have it, she can indeed still be of childbearing age? 2] that she doesn’t necessarily have to have thyroid problems? 3] it's known to cause chemical sensitivity? I have that really bad these days, noticed in relation to the renovations they are doing in my building (I’m guessing the paint and glue). The allergist stated that my non-allergic rhinitus would cause that, but not to the degree of symptoms I have.
After basically ruling it out due to those things, this doc remarked that even if I did have it, no treatment would likely be given me since I still get my period and I "don't have symptoms." I was like, what do you mean I don't have symptoms???? That's why I'm calling you, bozo (sorry). I do fit the early signs, from several main ones down to more specific ones like (body) hair loss, and even many of the more idiosyncratic ones.
Then he said of the two most logical tests for it, the easier, cheaper one would likely not show it even if it were there; and that the more complicated genetic panel would likely be needed, but he didn't suggest it. Then he said he would do what I wanted, BUT if we were to proceed, he wanted to go with the simple, cheap one that wouldn’t be capable of diagnosing this in me! So let’s figure out what he’s really saying there – perhaps that he’s already made up his mind, but is willing to placate me with something that admittedly isn’t appropriate?
Ya know, my symptoms are not all constant by any means, but have been intermittent for years. But as soon as I enter a symptom-free phase (lasts only weeks at best, with nightmarish prolonged bouts starting up at least once a year), boy do I feel stoopid and down on myself. I hate this, don’t we all. Only when it grips me again do I have the confidence to *KNOW* something medical is up. Over time I have really still had nothing looked at beyond standard physical exam tests, basic thyroid, lead and connective tissue. Surely it shouldn't end there; and I have no history of looking for or even taking seriously that something is wrong with me. I've *always* somehow blamed feeling poorly on myself until recently, because things got so much worse and in reality *more* specific.
As far as hemochromatosis, I did flash back to an experience that might not be worth mentioning, but is too coincidental to ignore. A few years ago I had an extreme reaction to a sodium-based (?) chemical a doc was using on me during a cosmetic procedure, and he remarked that it was odd because he "typically only sees that in older men." Now I want to know what he meant by that, since apparently hemochromatosis is usually seen in that demographic. So I’ve left a message for him.
Also while talking to the GP today, I asked him to recommend an endocrinologist as that would be my next choice for exploring testing. All he said was that endocrinologists basically test for thyroid problems, and mine looks fine (it doesn't seem to me that posters on this board have indicated that thyroid problems are all endocrinologists look for). Then he said the ones they refer to are very academic types who would be unlikely to be open to patient input. I can't believe these are good reasons for me not to proceed.
ANYWAY sorry, all vented for now, I know I have to make my own decision. I guess I'll procrastinate awhile and try to get another qualified medical opinion telephonically about exactly how outlandish it is for a 40ish female to end up having hemochromatosis. But thought I’d ask you if you are familiar *offhand* with the details in my three questions above. Thanks so much for any comments; but if at this point it's too hard to speculate further, please disregard this. You've already helped a lot! : )
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> I still think you should get test, actually I thing everyone should, just to be on the safe side.>
> It causes fatigue, joint pain, depression/anxiety, medication resistant bi-polar, heart problems, diabetes, thyroid, certain cancers,etc, etc,. But if you catch it early enough you can save yourself a world of grief.
poster:spoc
thread:323727
URL: http://www.dr-bob.org/babble/20040412/msgs/335516.html