Discussions By Condition: I cannot get a diagnosis.

Carcinoid

Posted In: I cannot get a diagnosis. 14 Replies
  • Posted By: Delliasydney
  • November 15, 2008
  • 06:38 AM

I was tested for carcionoid and pehochromocytoma 25 years ago but the tests all came back negative. I was exepriencing high blood sugar levels, flushing, panic attacks and mood swings and was having trouble with my appendix and later my gall bladder. After 5 years of trying to get someone to fix the problems, I was eventually prescribed doxepin (deptran) and had my gall bladder and appendix removed because of infection, or so I was told. The gall bladder was severely atrophied but had no stones in it. The appendix was inflamed. The symptoms disapeared after this, (including the dfiabetes) although I have continued to take the doxepin for the last 25 years (basically because I'm terrified of the depression coming back).

In the past 3 months, the flushing has returned along with wobbly legs, a cough, shortness of breath, palpitations and chest pain. This can prevent me from sleeping or wake me in the night if it happens at night. I've seen a cardilogoist because my EKG came back abnormal (elongated st segment and inverted T waves) and had a stress echo and holter meter tests done. The cardiologist says there is no sign of heart disease and that the EKG changes and rapid heart beat (up to 180 within the first few seconds of the stress test, daily waking average of 110 and sleeping of 80 from the holter and the echocardiograms were clear) are due to the deptran and to change medication. My blood pressure is also fluctuating between 160/90 and 110/70, but he doesn't seem concerned about that. I also had a glucose tolerance test as my blood sugar levels are high again (8 fasting up to 14 on the GTT), and have just started metformin this week, although the BS levels appear to be higher on metformin that without. Cholesterol is 4.5 without working on lowering it. The BS levels seem to rise overnight significantly, even after metformin and with nothing to eat or drink but water after 7pm, which is disapointing to say the least, partcularly as I've lost 4kg in the last month or so in trying to keep by BS levels normal, so it's not as if I'm eating much either and am paying particular attention to limiting (but not eliminating) carbs.

My issue is that I don't want to change medication as I don't want to risk another depressive episode while they muck about trying to find another medication that will work. (I did try Prozac some years ago and it didn't work). 1 depressive episode in a lifetime is more than enough. I'm prepared to put up with all these symptoms but just as I was walking out of the cardiologists office he called me back and said just to be on the safe side he wanted to test me for pheochromocytoma, partly because my mother has Conns syndrome and is also diabetic. I don't think pheochromocytoma is likely, as I had a chest and abdominal CT scan as part of the cardiiac work up and nothing showed up except for a large simple cyst on my kidney and one in my liver - nothing to worry about though.

I can't see how the deptran is causing the current problems as they are itermittent, and can happen several times a day for a few days then not happen for a week or more. I have also been taking it for 25 years with no problems so don't see why it should suddenly happen now. I'm only taking 50mg a day anyway.

Now that the flushing is back, (guaranteed if I drink alcohol, but also happens spontaneously on occasions), and given these other sypmtoms, I'm wondering if in fact I did have carcinoid 25 years ago, in the early stages and it was removed with my appendix and gall bladder - hence the cessation of the symptoms back then. If so, has it come back? Nothing showed up on CT scanning though.

Any thoughts? I'm a bit reluctant to ask my dr to check this for me as last time the merry go round of specialists and tests wasn't pleasant nor was the attitude of the specialists and I 'm sick of tests again already. I don't really fancy being treated like a complete idiot and time waster again and think I'd rather put up with the current symptoms and stick with the deptran. At least that way I can function normally. I have a fairly responsible job and the last thing I can afford is to go back into another bout of depression or keep taking time off to do test after test for them to come back negative.

Any thoughts would be appreciated.

Dellia

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