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Carcinoid Syndrome

Posted , 2 users are following.

sasha75333
sasha75333

Just wondering if anyone has been diagnosed with this? 

I have suffered from microvascular angina for over twenty years, and one of my worst sympotoms, (along with chest pain), is breathlessness on exertion. Over the past couple of years this has become much worse. I am also having bad bouts of feeling exhauseted and very hot with my face going red and sweating profusely. It passes if I rest, or go out into the cold for a few minutes.

Because of this, I have been asking my doctor if there could be something else causing these other problems.  He thought I had some of the symptoms of Carcinoid Syndrome. I have googled it, and I also have some of the other underlying symptoms. I had an endoscopy seven months ago because I was suffering with bad heartburn and feeling nauseous all the time. The diagnosis was Gastritis. I was prescribed 30mg of Lansoprazole once a day. Initially this worked, especially for the heartburn, but the nausea has returned with a vengeance.

I have been referred to an endocrinology clinic, but unfortunately the earliest appointment isn't until 20th July! I am now stressing out and worried, because my dad died twenty years ago with a brain tumour, which was a secondary from a tumour found in his stomach. I just wish I could have the tests sooner to see if I may have a tumour. It says they are slow growing, but if I do have one, it could have been lurking for some time. 

Any help/advise would be really appreciated.

Thanks,

Sasha 😊

0 likes, 3 replies

3 Replies

  • debbie75601
    debbie75601 sasha75333

    Posted

    Would the endoscopy not have shown anything? I have suffered with nausea every day since January, was diagnosed with Gerd and gallstones, had gallbladder removed in March, and still having reflux and nausea everyday. I also have no appetite and significant weight loss. Do you have those too? Get hot and cold, hot and cold, throughout the day? Any pain in your abdomen, under rib(s)? I would ask your doctor, since you have a history of cancer in your family, if he can push the endocrinologist to see you sooner. I'm puzzled as to why you are being referred to that type of Doctor though? I would think you need to go back to a GI Doctor. I know how scary this is, as I have been searching for an answer since January. We just have to keep pushing until an answer is found. Good luck and keep in touch. 
    • sasha75333
      sasha75333 debbie75601

      Posted

      Hello Debbie,

      Thank you for taking the time to reply to my post.

      I'm sorry to hear that you have all those digestive problems. Gerd and reflux can be horrible. I once had a bad experience of acid reflux almost choking me during the night. I was laid on my back and it just came up without any warning and really burnt my throat. The nausea is also horrible to deal with, so I really sympathise with you.

      I have had gerd, reflux and heartburn for quite a few years. It was mainly caused through taking anti inflammatory drugs for arthritis since my late twenties. They have ruined the lining of my stomach. I have always coped taking anti acid meds, but when it got really bad last year, my doctor sent me for an endoscopy. I wasn't happy with the way I was treated. I was told it would be done with sedation at the hospital. It was done in a local, medical centre with no sedation, and it was very rushed as they were running late. Anyhow, it revealed I also had Gastritis, which didn't sound too bad, and I was prescribed Lansoprazole 30mg once a day. It worked for a few months, but now I wake up every morning feeling very nauseated, and it lasts all day. I have no appetite and have to force myself to eat something. The reason I have been referred to an Endocrinologist, is because of a few other symptoms I have, my GP thinks it may be a rare carcinoid syndrome, (which effects hormones), and can cause a tumour to form, mainly in your digestive system, but also in the liver, lung, brain. The information I have acquired has mainly come from googling the syndrome. My doctor told me not to get too alarmed if I did google it, as it may not be that. But I worry because both my parents died of cancer. My mother had skin cancer,breast cancer and died of bone cancer. My dad had a secondary brain tumour, which I spoke about before. My grandmother also died of breast cancer, my mums brother died of brain tumour. So, as you can guess, I am hoping to get to see a specialist and have tests asap. 

      Thanks again for replying. I hope you can get some relief from your symptoms, as you say, we have to keep pushing for an answers.

      Good luck, and keep in touch. Please keep me updated with how you are coping. 

      Kind regards,

      Sasha. 

    • debbie75601
      debbie75601 sasha75333

      Posted

      Thank you for replying to me. I would still pressure the doctor to get you in ASAP with the specialist, due to your family history. I hate how they think it's okay to make us wait, especially with something so devastating. I too got woken up from the acid in throat, three times. Have no idea why. Perhaps antibiotics. Let me know what happens for you. Good luck 
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