Carcinoid Tumor diagnosis!

Posted by nathanb1979 @nathanb1979, Sep 10 9:31am

Hi, I have had autoimmune illnesses popping up since 2009 w/tachycardia and bladder spasms didn't know I was having bladder troubles while my heart was racing since 2009 and my hydroxy5 test came back positive not super high # then they did another one with in a week and it went up a lot of laboratory points in one week is that mean it's growing faster? So I have the carcinoid syndrome I'm having a pet scan this week should I go to Mayo for removal hopefully if hasn't spread? And what are my chances if I've had since 2009 it wouldn't have spread? Also if I asked my endocrinologist to get me to a surgeon I knew something was wrong and he couldn't get my tsh thyroid under control since 2009 and my parathyroid glands have been high w/calcium meaning their were tumors in at least one but I had surgery last Thursday for my ablated thyroid that was going back n fourth from hypo to hyper to hypo to hyper and extremely hypo and hyper and parathyroid glands were going to come out by a Dr and he cancelled my surgery I was 37 then and my thyroid that was ablated also but I just had like I said last Thursday by luck from my gastro Dr said you need to see the surgeon next to me the thyroid surgeon yours needs to come out and your parathyroid are wreaking havoc on your body and now I also have autoimmune illnesses along w/carcinoid tumor/syndrome! Could I sue my endocrinologist for cancellation of surgery in 2017 and blocking me from seeing a surgeon since I've been asking in at minimum 2012 to see one every appt once or twice a month!? Thanks!

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) group.

Hi @nathanb1979, you do have a lot to take in with this new diagnosis of carcinoid syndrome along with autoimmune conditions and endocrine issues. I have added your post to the Neuroendocrine Tumors (NETs) group here: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

I did this so you can connect easily with other carcinoid members like @hopeful33250 @char1962 @coco1 @carcinoid23462 @sophiarose @mfgw @sophiarose @kjstein @marilyn2525 @ceavce and others. I'm confident that many, if not all, members will share with you that diagnosing carcinoid tumors is often a long and twisted journey. They are notoriously challening to diagnose.

I recommend seeing a oncology team specializing in neuroendocrine tumor and carcinoid syndrome. If Mayo Clinic is an option for you, you can begin the appontment request process here to find out more: http://mayocl.in/1mtmR63

How did your thyroid surgery go? Will you see a NETs specialist next?

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Hello @nathanb1979 and welcome to Mayo Connect. I am glad that @colleenyoung tagged me as I have had surgery for three neuroendocrine tumors and also have hyperparathyroidism. I can certainly understand your frustration with these long-standing health issues.

Seeing a NET specialist is very important and Mayo has some great doctors who could help you understand this process and the next steps you need to take.

As Colleen mentioned in her post, many NET patients have been through the process of being misdiagnosed with other health issues before discovering NETs.

What is your next step?

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