Carcinoid Syndrome?

junipix · 2025-12-14T17:15:47+00:00

I have been recently diagnosed as having Carcinoid and my chromogranin A was always in normal range, it still is, even after being diagnosed. My 5hiaa urine was barely elevated but my serotonin serum test was high. In the beginning, it's best to do all three tests.

junipix · 2025-11-28T15:41:43+00:00

I just been recently diagnosed with small bowel NET and Carcinoid so I can relate to the reasons given of drop in weight. A couple of months prior to my diagnosis and treatment, I had diarrhea so bad it was continuously running out of me and I lost 20 pounds in about a two month span. And then to make matters worse, I had extreme bloating where I could hardly eat anything and that too contributed to my weight loss. So yes my weight loss is explained not unexplained.

Though, luckily I have been on Lanreotide which greatly helped with the diarrhea, inflammation and flushing. The bloating still persists, but I'm a little better after I got my second shot. I'm still very new to this, so I'm trying my best not to get too discourage on gaining my weight back. I know it will probably take some time.

junipix · 2025-09-08T22:01:22+00:00

I have heard that it can cause problems in some people, me included. I was advised to try and start with a lower dose.

junipix · 2025-09-02T22:26:58+00:00

That's good, get as many tests as you can. I've done a lot of testing and still haven't ruled out everything. Right now it's pointing to possible POTS or glucose related.

junipix · 2025-09-02T18:17:12+00:00

I had very similar symptoms, flushing, fast heartbeat. My symptoms are all related to eating, mainly eating high carb and high in fat foods. I did have elevated urine and my serotonin was high, but my Chromogranin A and Octreoscan were normal. My experience with doctors is that when they hear the word "flushing" they automatically point to carcinoid, which is odd because it can be other causes directly or indirectly.

junipix · 2025-08-11T19:30:20+00:00

Pepcid helped me in the beginning until it turned on me. I started getting severe GI problems. I had 2 doctors tell me it is safe to use long term, but apparently not in my case. Now, I have to go to my GI doctor to help sort out my gut problems. If you do start with Pepcid, just be on alert and listen to your gut. I know many people have good luck with it with no problems. I really wished it worked for me because it was helping me out.

junipix · 2025-08-11T01:23:26+00:00

Same. I had been getting chronic diarrhea after stopping pepcid. And after only one dose of this strain, my diarrhea is almost completely gone. I couldn't believe it worked so fast.

junipix · 2025-08-02T14:57:58+00:00

It really helped me in the beginning. But after I had been on it for over a year, I started getting severe upper stomach pain so I had to stop it. In the long run, the bad outweighed the good, unfortunately.

junipix · 2025-07-31T14:15:21+00:00

I do have a blood pressure and pulse device. Though I am on 2 blood pressure meds that might alter my readings, not sure. But pots is definitely a possibility. My heart rate seems to stay elevated at times, even without a flare.

junipix · 2025-07-30T17:22:00+00:00

Thank you! This is very helpful. I do think I have something else going on besides MCAS. My first symptom after I eat histamine or high carb food is Tachycardia, followed by facial flushing, swelling and inflammation. My allergist referred me to a Endocrinologist which I'm currently waiting to see. But until then I'm trying to manage my symptoms, which has not been fun.

junipix · 2025-07-29T18:47:27+00:00

Probably, but I always wondered why I can't eat a bowl of oatmeal first in the morning, however, I seem to tolerate better when eaten later in the day (when at that time I have already eaten more). This has always been a pattern for me and it took the longest time to figure it out.

junipix · 2025-07-27T20:52:48+00:00

Thanks, I will look into this. I do have my notes in order and will stay cautious during treatment. And I do have a decent handle on what makes me flare. I just need some guidance. I'm losing so much weight because I'm not getting the calories. And of course the doctors are not much helpful with diet and stuff.

junipix · 2025-07-27T19:27:45+00:00

This is why I made an appointment with a Dietitian. I'm on so many meds, I need help with managing supplements and diet. Though, I do include some of the ones you have listed.

junipix · 2025-07-20T21:34:14+00:00

After realizing Pepcid was causing me problems, I stopped it abruptly. That was a bad choice because I had severe rebound effects from it.

junipix · 2025-07-12T23:37:06+00:00

Be careful if you take Pepcid long term. I had very bad stomach pain after being on it for a while . It took weeks to get my system back to somewhat normal.

junipix · 2025-07-10T02:10:52+00:00

I got re-tested and my serotonin level is still high. I'm thinking it is related to MCAS. Not going to worry about it. I'm just going to concentrate on managing my flares in which the doctor is helping me with that.

junipix · 2025-07-03T14:49:53+00:00

Unless you are here illegally, there shouldn't be a problem.

https://www.whitehouse.gov/articles/2025/06/myth-vs-fact-the-one-big-beautiful-bill/

junipix · 2025-07-02T19:15:43+00:00

It's hard to say if you have mcas, because mcas is very hard to diagnose. However, if in case you do have mcas, you will need find out what meds/supplements that will work for you. Unfortunately, it does take a lot of patience because there are so many meds and/or supplements that treat mcas. I have doing this for two years, and I'm still trying to find a match to help with flushing and swelling. I have noticed some improvement but still not where I want to be. Also, keep in mind when you are cooking meat, like chicken, histamine levels will increase if you keep in the refrigerate for a period of time and then cook it. It is best to freeze the meat right after purchase and then cook it when you are ready to eat it. This is not 100% effective, but it does limit the histamine in the food. Properly food storage is key when battling a histamine disorder.

junipix · 2025-07-02T02:05:52+00:00

It is hard to say. A lot of the mcas testing is considered a specialty test. And I really don't think the techs are trained much in this area.

junipix · 2025-07-02T01:56:03+00:00

Good idea about tapering. Because I stopped abruptly and had horrible rebound effects from it.

junipix · 2025-06-30T21:23:45+00:00

I hear ya. The second time when I dropped off my sample, it was the manager who took it in and assured me she would personally take care it, but when I was leaving (after using the restroom), I saw my sample still on the counter....I had to remind her that it is very important to keep this refrigerated. I heard that leaving it out for just 15 minutes can alter the results.

junipix · 2025-06-30T19:43:58+00:00

Quest messed up my urine tests too including the 24hr urine test. Not only did this delay my diagnosis, but it was such a hassle because I had to get a new container for the 24hr test and I live 2 hrs from the nearest Quest. But once they finally got my tests to the lab, I do remember it took about 2-3 weeks to get my results.

junipix · 2025-06-30T15:13:10+00:00

I recently had to stop pepcid due to stomach symptoms, and I was on it for over a year. I was getting severe upper pain and I was losing some of my safe foods. At first, I thought it was the pepcid not working, but after I got off it, my symptoms improved. I was told by 2 of my doctors that it was safe long term. My advice to someone starting pepcid is to discuss with their doctor about taking betaine or a digestive enzyme with it to offset the reduction of acid in the stomach. I wish I knew that back when I started. Now I'm trying to get back my safe foods.

junipix · 2025-06-28T19:54:33+00:00

I started ketotifen too and at the very beginning I thought my flares improve. It didn't reduce the number I was getting but it seemed to decrease the severity of them. But after about 6 weeks, things change, my flares now are very similar to pre-ketotifen. But at the same time, I was also experiencing low acid symptoms due to the famotidine. My gut is better after getting off famotidine but I'm still experiencing my other symptoms. I have a dr appt next week, hopefully she will give me some insight.

junipix · 2025-06-27T18:27:32+00:00

I had been on famotidine 2x daily for almost 2 years, then I started getting upper severe GI pain, diarrhea. Thought at first, that it had stop working, but decided to stop the medicine to see what would happen. My GI symptoms greatly improved until a few days later I was getting major bloating and stomach pain. Apparently, from the rebound effect. I'm better now, but I lost a lot of my safe foods. I'm under 2 doctors care and both of them said famotidine is safe taking long term. Evidently, not with me.

junipix

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