carcinoid /syndrome?

My 15 year old daughter has been experiencing facial flushing(red hot to the touch) that comes and goes every weel or so , along with loose stools, abdominal pain, chest pain and nausea. She /we thought she was passing anopther kidney stone but Urology dr ordered renal lasix test and no, DERm dr ordered 24 hr urine and 5 hiaa was 2.5 (values were 0.0-6.0) but the VMA was 4.6 H values were 0.0-3.9) so it was only a little high. Blood labs taken on a day that her face was flushing (symtomatic) were NEU 72 H(50.0-70.0), LYM 19.7 L (25.0-45.0)TSH 0.246 L (027-4.20) IGD 199 H (0 -178)The Metanephrine was 34 , normal at (0-57) , normetananephrine was 142  , normal (0-148)Epinephrine below reportable range? Noreprine was 558, dopamine also below reportable range.Catecholamine Total was 558 .

Now I can't tell was a seratonin test done or is the catecholamine test the same thing? How about a ChromagraphinA or something like that? Shold this be done? My daughter feels so sick and she sleeps all the time when she gets home from school, I just want her feeling better.
Thanks

[Kamal S Saini, MD, MRCP (UK), DM]

Hi,
Carcinoid syndrome is caused by the involvement of the liver with carcinoid tumor of the gastrointestinal tract.
Your daughters blood reports are all near normal. However, she needs to be investigated for the symptoms. The most straightforward way would be to image her abdomen, and also her pelvis and thorax.
A CT scan would give us information about the underlying cause of her symptoms, and direct further testing or therapy.
All the best, and God Bless!

[lil sunshine]

Thank you,
My daughter has a referral to GI and is being followed by Dermatology and Rheum and Endo. Hopefully between all these drs they can find a dx . Her Uro dr had already ordered a CT last year to rule out kidney stones, it showed  "free fluid" and a small calcification, likely a phelobith? Not to worry we were told, meanwhile her pain has escalated, as well as her nausea etc.
Thanks

[Kamal S Saini, MD, MRCP (UK), DM]

Hi,
With increasing abdominal pain and nausea, it is very appropriate that the GI specialist will be evaluating her. Let me know how it goes.
All the best!

[lil sunshine]

Now her Hpylori Bacteri has come back positive  at 1.27  Range (0.00-1.09)   so it is only slightly elevated. What can this mean? A Derm Dr said he thinks my daughter has Rosaca but her skin does not have any of the looks of this. It is smooth, it comes and goes , she has no pustules, acne or  veins. I disagree with this. But then I look up Hpylori and it is associated with Rosaca? What do you think? I did ask another Derm dr who knows my daughter and he also disagrees with the Rosacea dx.
Thank you,

[lil sunshine]

Dr,
My daughter is having a SBFT and a colonoscopy soon. THe GI says they have narrowed down the dx to carconoid and hereditary angioedema. Some of her bloodwork agrees with the HAE but she doesn't look like it. So she is very complex.

Thanks

[Kamal S Saini, MD, MRCP (UK), DM]

Hi,
A barium follow-through has relatively low sensitivity for small lesions, and may not detect carcinoid of the GI tract even if it is present. Sometimes a colonoscopy too may miss a carcinoid lesion.
A more sensitive and specific test would be a modified PET scan, where a radio-tracer (DOTA-NOC) that specifically binds to neuroendocrine tissue is injected into the vein and the images obtained using a regular PET scanner.

[lil sunshine]

Dr , then WHAT (pardon the caps, it is the only way I know to EMPHASIZE) will the SBFT show? Is it looking for scar tissue from acid reflux perhaps?We are Military so everything for us is free. I can understand from a cost review they would want to do the least expensive tests 1st, also the least radio active as well for my daughter's sake.

She was in the ER last night with a "tight " throat and chest pain , abdominal pain, and her B/P was 137/78 and pulse was over 115 the whole time. It has been over 100 for a long time now. It is not uncommon for her to come home from school and have a pulse of 120 but B/P of 112/76. Flushing and diareah  but she has nausea  everyday.

I am ready to give up, I am so tired!

[Kamal S Saini, MD, MRCP (UK), DM]

Hi,
A barium swallow with follow through will detect bigger lesions, and give useful information about the caliber of the esophagus, stomach, and intestine.
Please dont give up. Modern medicine has a lot to offer your daughter. You are lucky to be in the armed forces, where the medical expenses are covered.
Good Luck, and be strong!

[lil sunshine]

A related discussion, Follow-up for DR Sanai was started.