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High CEA, High Pancreastatin, High Calcitonin, High ChA
Just some advice:
- I've experienced a considerable amount of unintentional weight loss in the past 5 months (over 25% with a BMI at 18 or less).
- I have extreme fatigue (which is very very unusual)
- I had the following CEA levels measured: 5.4, 5.8 and now 6.1
- My Pancreastatin is close to 700 and my newest Pancreastatin is 1200.
- my calcitonin is slightly elevated as well.
- my HVA (24 hour urine) is very elevated as are my fractionated catecholamines (serum)
- my HA1C is virtually undetectable after several measurements (I'm not diabetic and I didn't use insulin)
- In fact, I have frequent, persistent and dangerous episodes of hypoglycemia in the absence of any insular type medications.
- I have ceased producing haptoglobin and my reticulcte is low and falling.
- I have nonmegaloblastic macrocytic normochromic anemia with worsening acanthrocytosis, increasing (now moderate polychromasia). I have increasing large granular lymphocytes (from 12%, to 27%, to 41% to now 55%).
-CA 19-9 is normal but I am Lewis negative.
- I'm heading in for a gallium pet and an MRI with elastiography.
- Persistently vitamin D deficiency (servere)
- severe Exocrine Pancreatic Insuffiency (84 and now 31)
- Vasoactive Intestinal Peptide is very very very low (repeated)
- CgA is elevated but not crazy
There is more but has anyone seen anything like this?
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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Hello @sgilbert and welcome to Mayo Clinic Connect. After reading through your long list of symptoms/test results, I can see how quickly you could get overwhelmed by all of these details and trying to put this puzzle together to figure out what is causing the unexplained weight loss.
I thought I would include this link to some additional information about unexplained weight loss in case it is at all helpful in at least confirming that there may be an underlying health condition involved.
- Unexplained weight loss:
https://www.mayoclinic.org/symptoms/unexplained-weight-loss/basics/definition/sym-20050700
All that said, I am curious if you are at a medical facility that has teams working together across multiple departments to make sense of all of your symptoms?
Hello @sgilbert
I would like to join Amanda, @amandajro in welcoming you to Mayo Clinic Connect.
You certainly have a lot of interesting symptoms as well as lab results. I'm sure that these, combined with the weight loss are concerning to you as well as to your medical team. I am glad to hear that you will be getting a Gallium Scan soon. That is important for the kind of symptoms you are having.
Here are some discussion groups on Connect which might be helpful, I encourage you to read them,
https://connect.mayoclinic.org/discussion/neuroendocrinetumour-in-pancreas/
https://connect.mayoclinic.org/discussion/net-insulinoma/
I would also like to invite @ahtaylor to this discussion as she might add some other thoughts to your situation.
Has your doctor suggested a particular diagnosis right now? Have any meds been tried yet?
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1 ReactionI do and I'll be honest, I'm completely underwelmed. I'm on diazoxide and several others. It's been kinda disappointing.
Hello @sgilbert
When you last posted you were going to have a Gallium scan. Have you had that yet? I hope you are finding some answers. Will you post again with an update?
Yes I've had my imaging. I meet with the pancreatic surgical oncology group tomorrow after the tumor board meets. I have hepatology (cancer and transplant clinic) after that. I'm not feeling great. My stomach has stopped almost all digestion and my hypoglycemia is pretty constant, even with DIAZOXIDE. My CEA and cga and Pancreastatin all increased and so did my HVA. I have pretty severe anemia and my blood smear was worse. I need to just get Rollin and what comes will come. It'll work out. We have 5 small children that provide a lot of encouragement. Thanks again.
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1 ReactionIf there are people that have also had MTC I'd like to talk to them. I developed pulmonary vascular and just feel terrible. I'm surprised at how widespread this is.
@sgilbert, you will find others talking about Medullary Thyroid Cancer (MTC) in the Thyroid Cancer group, in particular see this discussion:
- Anyone here with Medullary Thyroid Cancer ? https://connect.mayoclinic.org/discussion/anyone-here-with-medullary-thyroid-cancer/
How did your appointments go with the pancreatic surgical oncology group and hepatology?
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