Some Good News

[cordellia]

hello all,

recently did a few rounds of testing (blood/urine) and was told that

5HIAA was elevated and this along with some other symptoms suggested a carcinoid tumor. followup CT scans were clean,

my endo was visibly relieved when she gave us the good news...

she is a fine doctor with a very caring attitude. her name is alina gavrila. her foci are diabetes and obesity. i was referred into the endo clinic (beth israel, boston, MA) and she happened to have the first available appointment. my dysautonomia is foreign to her. she explained that i need to find a

good neuro... (the search continues) in spite of her unfamiliarity with autonomic issues, she tried very hard to help. she ordered tests and more tests--left no stone unturned... battled with my wretched insurance company and wrote lovely referral letters, returned calls quickly and took her time in office to share and explain... though we came up empty handed--i am so grateful to have met her and happy to report that the scans were clean.

with healthful wishes,

cordelia

[yuliya]

Just wondering what symptoms were you having that led the doctor to test for that?

[Chaos]

Congrats on the good news! That's terrific!

[Lenna]

Cordelia,

There is a department at Beth Israel called the Center for Autonomic and Peripheral Nerve Disorders. While the personality of the doctor who runs the department may not be everyone's cup of tea, he does understand POTS. In fact, he is a leading researcher in the field. That might be a place for you to start.

Be well,

Lenna

[sue1234]

Cordelia,

I am at the moment doing a 24-hour urine for a 5-HIAA test myself!! Last night as I was lying in bed reading in my bedroom, I had my millionth hot flush(dry) for the day. I thought, that's it! I was going to get up this morning and do a 24-hour urine to rule in/out a carcinoid. I have done these a couple of times over the last couple of years and they were negative. BUT, I had not started flashing daily yet, they had only been sporadic.

I am glad it was not carcinoid. But, I am wondering what the elevated levels now mean? Serotonin is one of a few things that can cause vasodilation. That's why I am checking things off my list that cause it. I sit and next thing I know, I am getting hot from my chest up through my face, down my arms to my hands. My whole face turns red, even my forehead. It is a dry flush. My hands swell with all the blood. I can handle this in winter, but don't know what I'll do when the heat gets here.

So, did the doctor say what the elevated levels might mean?

[juliegee]

So happy, Cordelia. What a relief that must be!!! How wonderful to find a caring doctor and get good news. Phew!

Hugs-

Julie

[janiedelite]

Hi Cordelia,

My mom has had carcinoid syndrome for most of her life, and often her scans are negative. Most of her tumors are the size of pepper granules. She has a few larger ones that have started showing up after decades of growing, but she has to have contrast in order to show them. Her octreoscans are always negative. The BEST marker right now for carcinoid syndrome is Chromogranin A. It's a blood test that will show carcinoid tumor activity over the past week or longer. 5HIAA only shows carcinoid activity during that 24 hour period, which sometimes leads to false negatives (not so in your case). The fact that it was positive could mean you have another condition that causes elevated blood serotonin. Are you on any SSRIs? There are other MEN (Multiple Endocrine Neoplasia) syndromes that can elevate a 5HIAA, as well a few folks who lack the enzyme that breaks down serotonin in the blood.

I also have participated in the local neuroendocrine tumor support group and have seen quite a few carcinoid patients whose tumors were only found after surgery, like my mom. My advice would be to research the markers of carcinoid syndrome which include primarily chromogranin A, but also pancreastatin, gastrin, peptin, and more that I can't remember right now. Anyway, it would be a good idea to research this because you can isolate the general area of your tumor depending on what markers are/aren't elevated (areas include foregut (lungs), midgut (stomach/intestines), and hindgut (colon)). If all of the other markers for carcinoid are negative, then you are in the clear and could just have them re-checked periodically.

I may have given you more information than you need, but my mom went for over 7 years being told that her symptoms were in her head before she was properly diagnosed and treated. I'm so glad you have a doctor that takes you seriously. Any endocrinologist could run these markers, if you choose this route. My mom's endo was the doc who finally diagnosed her as well. Feel free to PM me for any other questions.