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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14 Replies:

  • I have been misdiagnosed twice in my life and I am only 45. The second time was last year in which they found a lung carcinoid tumour, by that point I was very sick nearly fatal, I am very lucky to be hear. It was misdiagnosed for at least 2 yrs, so many strange symptoms prior...flushing, asthma attacks,diarrhea, limbs swelling.........and I am still having abdominal problems major bloating and upper right abdominal pain very constant. The main thing I want to express to you is to be agressive and assertive....there is nothing to lose. There are so many conditons but we deserve an answer and trust you need the answer asap!!! I have been through so many doctors now and if it is carcinoid gosh I had one on my lung and even I have all these symptoms they have neglected so many tests. I am in Canada and we seem archaic up here, a complete lack of knowledge. Its very frustrating to say the least. I have finally located a doctor, this is the 5th one, a gastrointerologist that knows something about it. Its crazy that we have to be our own doctors but take your symptoms seriously, its just no fun not feeling as good as one used to feel. I wish you the best of luck!!! There has to be an answer for you! For information on Carcinoid there is lots of info at the Carcinoid Cancer foundationkat:o:)
    kathouse1 6 Replies
    • February 8, 2009
    • 09:57 AM
    • 0
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  • one more thing, I did find a blog I dont where it was now..........many people have had their gall bladders removed unneededly and found a different health problem later, its seems to be a commen organ they take out when confused........good luck with the doctors and just dont worry what they think of you being persistent but you definitely need an answer. All of this has really made me mad at how many times they send us home and tell us to take vitamins and read a book........they pass the buck often and if it isnt an easy answer many doctors dont care to try.......my lawyer girlfriend has taken on law suits for this sort of thing......Well if I havent motivated yet.........plug away and toss the doctor if he isnt ordering up test after test , as many as it takes!! This is your life and we are the only ones that can drive it and life is worth living even when we are sick:)!!:):D
    kathouse1 6 Replies
    • February 8, 2009
    • 10:03 AM
    • 0
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  • Could your flushing be hot flashes?You don't have any other symptoms of carcinoid,so I doubt that it's that.Whren your appendix was taken out,it would have shown whether it was carcinoid or not.I don't think your antidepressant has a thing to do with your symptoms,not after 25 years and at such a low dose.
    richard wayne2b 1232 Replies
    • February 8, 2009
    • 01:17 PM
    • 0
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  • Richard Wayne...I think you know quite a bit about Carcinoid correct? If so, I have a question for you...as I am a bit panicked! SO, 6 years ago (at age 28) I had a sigmoidoscopy and they found a 3mm carcinoid in the rectuim, removed it and never thought about it again. He said to get a repeat colonoscopy 3 years later, which I did and everything was fine. about 3 years ago I began having very vague LRQ pain, came and went, nothing terrible. Ultrasounds were normal. Pain went away for a year and is now back. AGain, nothing horrible. Had CT and it was fine. Is there a chance that this could be another carcinoid? Would it show up on CT or blood work? I have diarhea every now and then, but no other carcinoid symptoms. Do you have any thoughts? If I had one in teh rectum is it likely to have others somewhere else???Thanks!!!
    mcaseyw 4 Replies Flag this Response
  • The first thing have another sigmoidoscopy.If you want tdo blood and urine also,you get a chromagranin test and a 24-hr urine 5-HIAA test I doubt that it's a recurrence,but you need to make sure Good luck.
    richard wayne2b 1232 Replies Flag this Response
  • If the chromogranin A or the urine is positive,you would then need an octreoscan.
    richard wayne2b 1232 Replies Flag this Response
  • Thanks :-) WOuld any of this have showed up in my ultrasound or CT scan? If there were mets to liver or something wouldn't they have shown up?Thannk you!
    mcaseyw 4 Replies Flag this Response
  • Yes,mets should have shown up on both tests,but not if you have a small primary lesion in the rectum.
    richard wayne2b 1232 Replies Flag this Response
  • could there possibly be one in the small intestine that didn't show up on CT? I have had pain in the LRQ for 2-3 years now...no diagnosis...one dr thinks adhesions from c-section. I guess I am just concerned that since I had ONE carcinoid in the rectum that there myay be others that were not found??? Doe sthis happen or am I being parinoid for a 35 yr old women? Do these come in groups or usually form singally?
    mcaseyw 4 Replies Flag this Response
  • The small intestine is an unusual place for a carcinoid,I think.I doubt that your pain is due to a carcinoid tumor.
    richard wayne2b 1232 Replies Flag this Response
  • I've never read that they come in groups.
    richard wayne2b 1232 Replies Flag this Response
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  • I was wrong about them not being in the small intestine.
    richard wayne2b 1232 Replies Flag this Response
  • thanks again! will these tumors cause pain? if so what kind of pain?
    mcaseyw 4 Replies Flag this Response
  • Rarely.Most cases are asymptomatic and are found at autopsy.
    richard wayne2b 1232 Replies Flag this Response
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