I am a 24y old f. from Germany with chronic intestinal pseudo-obstruction. I have no colon, a permanent ileostomy , a suprapubical catheter and a Hickman catheter (not longer used due to high risk of sepsis and significantly decreased caloric needs.
Within the last 6 months I have been experiencing new and fast progressing endocrine/metabolic.
Abnormal levels of cortisol w/reversed diurnal rhythm and high DHEA were measured.
The following was stated: slightly elevated reddish nodules in the duodenum/stomach via endoscopy (diffuse lymphoid hyperplasia? ), several significantly enlarged lymph nodes along the ieal wall via sonography (no acute infection/inflammation) , lymphoid hyperplasia of the term. Ileum via biopsy of the gut tissue, possible intestinal lymphangiectasia., IgA-levels, enlarged spleen, Raynaudâs., slight tricuspid insufficiency.
According to the literature a possible association between carcinoids and CIP is known.
My symptoms include: decreased metabolism/very low caloric needs (parenteral nutrition has been stopped); extreme sleeping disorder; excessive thirst (at night as well) and increased urine output, easy dehydration; increasing muscle weakness and muscle atrophy despite of the best nutritional status I have ever had during the last 5 years thanks to parenteral nutrition; high frequency of(catheter-related) infections including sepsis/suppressed immune-system (4 infection with sepsis within 5 months); flank pain; abruptly changing of stomal output (previously little thick output, now massive and liquid output/diarrhea-like); altered body composition but steady weight (50kg, 170cm)despite little oral intake and intestinal malabsorbtion, redistribution of fat tissue and accumulation in the abdominal area, loss of muscle tissue; extensive fatigue; irreversible osteoponia; increased body hair, especially in the belly area and face; sudden attacks of sweating etc)
I have never experienced any of these symptoms before even with a weight of 37kg and in my 4 year history of marked underweight while I already had Low-T3-Syndrome (not as bad as now)
It would be very helpful for me if you could comment on the following questions:
1. Do you think/know if a carcinoid can be secondary to CIP?
2. Do you think that the enlarged lymph node and the various lesions that were observed via endoscopy have any clinical significance and should be addressed again with respect to the neuro-endocrine abnormalities??
3. May an intestinal carcinoid produce more than one hormone at the same time blurring the typical clinical picture of a single hormone excess and creating mixed symptoms? E.g. ACTH excess(causing moderate symptoms of cushing's) and serotonin excess (causing diarrhea, reducing the severity of cushing's)?
4. Do you think further clarification regarding neuroendocrine tumors and intestinal carcinoids is justified with the clinical piture I present? And if yes which screening-tests would be reasonable? (serotonin in the 24h-urine? CgA ?)
5. What's about imaging of the adrenal glands due to the new and increasing flank pain and possible tumor there?
6. Could the abrupt changing of stomal output indicate secretory diarrhea that is caused by excessive (digestive) hormone production subsequently to a carcinoid?
Previously, I had very little and thick output (almost like âconstipationâ) and intermittent massive liquid output due to bacterial overgrowth but this kind of diarrhea did seem to correlate with oral intake.
7. Are there other possible locations for a carciniod tumor with this clinical picture? Could it be an ovarian carcinoid (due to increased DHEA levels)?
I would be very grateful to hear your opinion. Thank you very much in advance!
Even if you had carcinoid disease, this would not account for the numerous and complex symptoms that you describe. In fact, other than intestinal obstruction, small carcinoids within the GI tract rarely cause any symptoms unless there is also a massive spread (metastasis) of carcinoid tumors to the liver.
A serum Chromogranin A level and a 24-hour urine 5-HIAA level are good screening tests for carcinoid disease, although the urine 5-HIAA test is associated with a relatively high incidence of false-positive results. If these tests are both elevated, however, then a a CT scan of the abdomen and pelvis, and an octreotide scan, can be performed to further assess for the possibility of malignant carcinoid disease.
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