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- Tue Feb 08, 2005 3:57 am
This will probably be a long post but I am not sure what else to do but seek help in a place like this.
I have been sick for about three years. I have Hashimotos and have lived with fibromyalgia for almost 10 years. I take no drugs for my fybro and have a high tolernace for pain. I have four children and am a busy wife and mother. I work full time.My husband is a class 1 driver so is gone all week.
Three years ago a pain started in my right side. It was intermitant and I just put up with it for a while. It got quite annoying so I trotte off to the doc who sent me to the hospital where after a couple of days they decided to out my appendix. Voila that pain felt much better . Three weeks later the doc called me I had a 2mm carcinoid tumor in the appendix. they were surprised because at the hospital I had no fever or elevated blood count no symptoms beyond unbearble pain. After they took it out and found the tumor and a gummed up scarred appendix from many infections they kinda thought it was funny I had no pervious signs. about two months later pain started in my left side and started having problems going to bathroom have horrible bout s af diareah and sometimes constipation. They tested everything , cat scan xray blood tests, bone scans. Nothing. everything is fine. months went by. I am getting tired all the time, they check thyroid oh its just hashimotos you will feel better in a few months. I take my pills and months later still feeling bad. Get a bad flu throwing up and end up in hospital twice dyhydrated with horrible watery diareah. They send me for all the tests again colonoscopy, endoscopy, xrays . Surgeon says no looks good. I get these weird flushes sometimes. My face feels lie it is burning and getts all red. I am soooo exausted all the time. Tired of them testing me and saying nope nothing. I am not crazey. I am fed up. Afraid to go back to docs because they are tired of me saying I am sick still. Pain in left side by ribs wrapps around to back. Always around everyday. A dull ache makes it hard to sleep. Bowels sometimes are weird color a yellow and a couple of times almost white and they are all broken up and float I don't get it at all. can someone shed light on me or am I just a hopeless cause I am getting depressed over this.
| Dr. Shank
- Sat Sep 24, 2005 6:52 pm
Thank you for your detailed post. That makes my job a lot easier and my reply a lot shorter.
You did not mention, however, whether your carcinoid was benign or malignant. Since you have given an almost textbook description of carcinoid syndrome, I believe that it was malignant. If the primary tumor was in your appendix, even having the symptoms that you describe would be virtually diagnostic of metastases. The blood from that area drains to the liver, which is usually able to breakdown the highly active hormones and hormone-like substances that may be produced by a carcinoid tumor. Symptoms from a tumor originating in structures derived from the embryonic hindgut usually mean that the tumor has spread to the liver itself or to tissues that do not drain into the liver.
The first thing you must have is an endocrinologist, which you are obviously have not had. Endocrinologists are the experts in endocrine cancers, like carcinoids (and in Hashimoto's, for that matter). You can find an endocrinologist near you by searching the website of the American Association of Clinical Endocrinologists (http://www.aace.com).
The next thing you need is testing for a long list of chemicals that could be produced by a carcinoid tumor, with an emphasis on those that might explain your symptoms and physical findings. The primary reason for this is to identify the products of your tumor to use as markers of your disease activity. The other reason is that drugs are available to block the effects of many of the products of carcinoid tumors. The endocrinologist will know how to do all this.
The third thing that you will need is an octreotide scan. Nearly all carcinoid tumors have receptors for somatostatin. Octreotide (Sandostatin) is a synthetic version of somatostatin. A radioactive tag attached to the octreotide molecule will tend to accumulate at the site(s) of carcinoid tumors. While this is the best test for locating carcinoids, unfortunately, most carcinoid tumors are too small to show up by this or other imaging. CT, MRI, ultrasound, and PET scanning have virtually no role. If tumor can be identified, it may be surgically resectable. That may reduce your symptoms and extend your life, but it will not be curative for metastatic carcinoid.
Next, you will need to be treated with octreotide. It can be given in a long-acting form (LAR), usually once a month. Octreotide reduces the production of these chemical substances by carcinoid tumors and usually tends to shrink the tumors, or at least slow their growth, and it prolongs life. It seems to be more effective than the other synthetic versions of somatostatin. Massive doses are sometimes required.
Interferon has been reported to work with octreotide. Octreotide can be used to selectively carry powerful radioactive substances to the tumor cells (such as with Indium-111-octreotide). [131I]-metaiodobenzylguanidine (131I-MIBG) is commonly used in the diagnosis of other types of hormone-secreting tumors, but some benefit has been reported with using it in high doses for carcinoid tumors. Conventional chemotherapy is not very effective. Conventional radiation therapy may give partial temporary relief for local symptoms.
Thiazoladinediones are drugs that are most commonly used to treat diabetes. Two of them are available: rosiglitazone (Avandia) and pioglitazone (ACTOS). Both of them have been shown to have very favorable effects on abnormal cell growths, including some tumors and even cancers. There is one report that pioglitazone reduced the growth and caused a special type of cell death called apoptosis (analogous to suicide) in carcinoid cells grown in the laboratory. Since the thiazoladinediones are extremely safe, they would be well worth a try. I would consider using more than the doses that are recommended for diabetes.
Treatment will need to be lifelong. The primary goal should be to control the production of the chemicals by the carcinoid or to block their effects.
Finally, you will have to be monitored for endocrine, digestive, and nutritional deficiencies that can occur with long-term octreotide therapy.
I am concerned about the pain under your left ribs and around to your back. It suggests either that your carcinoid is producing large quantities of gastrin, which would stimulate stomach acid secretion and could cause intractable ulcers, or that you may have a relatively large tumor in your pancreas. Metastases to bone, while not common, would also fit your discription.
The "wierd" yellow or white floating stools are harder to fit in. They suggest that you either have some sort of biliary obstruction or that you are malabsorbing fat. You could also have these changes if the carcinoid caused food to move through your bowels too quickly for fat to be broken down and absorbed or for bile to be converted by bacterial to the pigment that usually gives stool its brown color.
The comments made to you about your Hashimoto's disease show a disturbing lack of knowledge about the condition. I suspect that your treatment for the hypothyroidism has likewise been suboptimal. This may be contributing to our extreme fatigue and your fibromyalgia symptoms.
Fibromyalgia is being increasingly understood as a neuropathy. In other words, the symptoms are due to abnormal nerve functioning. Treatment with the same drugs that help to control other types of neuropathies, such as various diabetic neuropathies, can greatly reduce the symptoms, although I find that fibromyalgia patients are usually able to tolerate only very low doses and very slow titration of these drugs.
I hope that this is helpful.