NET - Insulinoma

So my daughter has had a few Seizures but they can't find what's wrong. Everything comes back normal, I know she's not epileptic shes had maybe 8 in the last 5 years her last seizure was march of 2022 her fasting sugar shows its high, Doctors just say she is Hypo glycemic

@hoochinmama

On Connect there is a discussion on blood sugar problems which might be more helpful to you. Here is the link, https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/.

You might post about your daughter's hypoglycemia in that discussion group. There are many members there who can offer you some support.

How is your daughter feeling now? Is she currently seeing an endocrinologist for the hypoglycemia?

Called tried to see an endocrinologist he told me there wasn't enough info on her problem so my referral was denied 😒

I suggest that you post on the Connect discussion group about Diabetes and endocrinology. Here is the link, https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/.

Perhaps someone in this discussion group can offer some support and encouragement.

Don't miss this week's Member Spotlight featuring fellow NETs member @ahtaylor interviewed by none other than NETs mentor @hopeful33250. Learn more about @ahtaylor behind the scenes and what motivates her to help others and find balance in life.

– Giving it All You've Got: Meet @ahtaylor https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/giving-it-all-youve-got-meet-ahtaylor/

I'm going thru same problems with dangerous hypoglycemia. Have had Whipple also. Only thing that helped, caused bad side effects, blood sugar got so high, they had to give me insulin. I ended up on dialysis from fluid retention. Currently doing chemo with capecitabine and telmodar. Not noticing improvement. Hopefully you find out something at mayo. I was referred there but financially I wouldn't be able to get there or do it.

I am new to the group. My husband who is 62 years old starting having problems right after Easter this year (2023). He passed out twice and had low blood pressure. He was seen by a cardiologist they upped his blood pressure medication. After we saw our GP we talked about the possibility of having Addison disease because he was on high dose steroids for 9 months for pulmonary pneumonitis, which is an autoimmune disease. Turned out no Addison but his symptoms got worse so the GP thought he might have an insulinoma. We have had a very difficult time getting a diagnosis. He got a blood glucose monitor and it showed blood sugars between 60-120 and then he got a Freestyle sensor this is making catching these very blood sugars easier. He has had multiple blood tests all negative, a CT scan which was negative. We are very frustrated. His symptoms all fit with the insulinoma. We live in Colorado and the Endocrinologist in our area will not see us. They said the glucose monitor was not correct. Does anyone have any suggestions on how to be seen by the specialist to get the diagnosis????? We are willing to travel.

I'm 53 and have already had 2 parathyroid adenomas removed. Had on-again-off-again high gastrin (could be atrophic gastritis), 5-HIAA, ADH, & metanephrines and a couple low a.m. ACTHs.

Oh, and high serum B12, high speckled ANA, high C3 & total hemalytic complement proteins, high interleukin/cytokines (IL-2R, IL-6, IL-10), high chromogranin A. The B12, ANA, & IL-2 are unusually high. I'd call the rest consistently elevated.

I haven't had anymore luck than you & your husband getting a specialist to look at all that from a multiple endocrine neoplasia perspective.

I am researching self-pay imaging options. I have read that you can order a 68-Gallium Dotatate PET-CT yourself in some states. (CT without contrast would miss many NETs. Don't let them tell you that a normal CT scan means nothing is there. NETs can be very small & still active.) A self-pay imaging center may not be as reliable, I suspect, as a major medical center's imaging team. But if you get a NET imaged, your PCP should (I would hope!) be able to get your husband in with a multidisciplinary team.

Check any referral! Look up who you are being referred to. If your husband gets referred to a pituitary or adrenal specialist solo practitioner, they won't look beyond their one area of the endocrine system. Or, at least, that's been my experience.

It's frustrating. It takes forever to get anywhere. But you can do this. Took me 2 years to get the parathyroid surgery. But I did it and I likely slowed my bone loss. It's worth the work.

Just keep asking questions and reaching out. ❤️

Welcome to the group! Insulinoma diagnosis can be tricky. In brief, I was diagnosed in 2015 and it took around a year to get to the diagnosis. My first endocrinologist, after a long consultation, stated “you are not really hypoglycemic” and wanted to refer me to a neurologist. After driving with my 2 small kids (at that time) and not knowing where I was and a glucometer reading of 34, I got a second opinion. My PCP set up both endocrinology referrals. After a year of various testing, the second endocrinologist set me up for a 72 hour fast which is one of the better diagnostic tests. My blood sugar dropped around hour 38 and my labs pointed to an insulinoma. An endoscopic ultrasound revealed 2 and I had a modified Whipple in 2015. In 2017, I was referred to Mayo after hypoglycemia persisted and increased in frequency and severity. Prior to the referral - 2 MRIs and and endoscopic ultrasound did not reveal any additional insulinomas. However, after a week of extensive testing at Mayo, 4 more were found and an additional 5 were found during my surgery at Mayo. A month later the hypoglycemia recurred and after additional testing - Only through a test called a calcium stimulation test - have we discovered there are additional insulinomas in my pancreas and as of April 2023, my liver. None of them show up on imaging. All that to say, finding/diagnosing insulinomas is not always simple.
A couple of thoughts - Have you tried a different endocrinologist? What testing other than a CT has been done? I could talk all day on this topic and would love to be of any assistance I can 🙂
I truly understand the frustration! Continue to be your husband’s advocate! Continue to seek out the care you feel he needs, until you have answers you need! Please let me know if there is any additional information you feel would be helpful or if you would like to connect in conversation. I am happy to do so.
Best wishes in this journey - keep fighting!

Thank you so much for sharing your story
I would like to chat and hear more of your story.
You have given me hope.
Thank you and may ypu continue to heal
Pam