1. < Neuroendocrine Tumors (NETs)

Should I see a specialist?

Posted by mtnmom @mtnmom, Jan 27 10:26pm

Hello! I am 43 F and having episodes of hypoglycemia for years that have gotten more frequent. I’m also constantly hungry. I mentioned this to my primary doctor last month who ran some blood work and noted concern that I had a glucose of 60 and insulin of 25. She felt the insulin was too high for that low of glucose. This was about an hour after I had coffee and a protein bar.
She recommended seeing an endocrinologist, and I’ve called but they are backed up months and months. They also seem more focused on diabetes care than low blood sugar. They were confused about my actual problem when I tried to make the appointment! I do think it’s possible I have an insulinoma.
I guess my question is would this be worth traveling to Mayo for some testing? I live on the east coast. It would certainly be expensive but I want answers sooner than later and I want them from someone who knows what they’re doing. Would love some insight. Thanks!

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

lindabees | @lindabees | Jan 28 10:00am

Hi @mtnmom
Im sorry you’re going through this. How frustrating to have to wait that long for an appointment! Perhaps there is another endocrinologist that could see you sooner?
In the meantime, has your primary doctor conducted a 72 hour fasting test? This is apparently the “gold standard” for diagnosing Insulinoma. Here’s a paragraph from the NIH explaining it:

In adults with symptoms of neuroglycopenia or documented low blood glucose levels, the gold standard for biochemical diagnosis remains measurement of plasma glucose, insulin, C-peptide, and proinsulin during a 72-h fast (Table 1). This prolonged fasting test can detect up to 99% of insulinomas[39].

Unfortunately, most net specialists won’t see you until you have been diagnosed with a net. However, Mayo would be an excellent starting point with an endocrinologist who, if Insulinoma is confirmed, can then hook you up with a net specialist. The same can be said for any institution with a net specialist in its network.

Best of luck to you!

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 7 12:18pm

Hi @mtnmom, I agree with @lindabees that you would be well served to seek a second opinion from a NETs specialty team at Mayo Clinic. Given that you're on the east coast, you may prefer to consult with NETs experts at the Mayo campus in Jacksonville, Florida. Whichever location your prefer AZ, FL or MN, you can get started by submitting a request here: http://mayocl.in/1mtmR63

REPLY
1 reply
mtnmom | @mtnmom | Feb 8 7:40am
In reply to @lindabees "Hi @mtnmom Im sorry you’re going through this. How frustrating to have to wait that long..." + (show)
@lindabees

Hi @mtnmom
Im sorry you’re going through this. How frustrating to have to wait that long for an appointment! Perhaps there is another endocrinologist that could see you sooner?
In the meantime, has your primary doctor conducted a 72 hour fasting test? This is apparently the “gold standard” for diagnosing Insulinoma. Here’s a paragraph from the NIH explaining it:

In adults with symptoms of neuroglycopenia or documented low blood glucose levels, the gold standard for biochemical diagnosis remains measurement of plasma glucose, insulin, C-peptide, and proinsulin during a 72-h fast (Table 1). This prolonged fasting test can detect up to 99% of insulinomas[39].

Unfortunately, most net specialists won’t see you until you have been diagnosed with a net. However, Mayo would be an excellent starting point with an endocrinologist who, if Insulinoma is confirmed, can then hook you up with a net specialist. The same can be said for any institution with a net specialist in its network.

Best of luck to you!

Jump to this post

Thank you! Fortunately I did get in with a local endo and can be seen end of March. Wish I didn’t have to wait that long, but it’s better than July.
I hope they recommend the 72 hr fast when I go.

REPLY
1 reply
mtnmom | @mtnmom | Feb 8 7:40am
In reply to @colleenyoung "Hi @mtnmom, I agree with @lindabees that you would be well served to seek a second..." + (show)
@colleenyoung

Hi @mtnmom, I agree with @lindabees that you would be well served to seek a second opinion from a NETs specialty team at Mayo Clinic. Given that you're on the east coast, you may prefer to consult with NETs experts at the Mayo campus in Jacksonville, Florida. Whichever location your prefer AZ, FL or MN, you can get started by submitting a request here: http://mayocl.in/1mtmR63

Jump to this post

Thank you for the info! I’m certainly going to look into the possibility of getting to one of the Mayo locations.

REPLY
1 reply
lindabees | @lindabees | Feb 9 10:20am
In reply to @mtnmom "Thank you! Fortunately I did get in with a local endo and can be seen end..." + (show)
@mtnmom

Thank you! Fortunately I did get in with a local endo and can be seen end of March. Wish I didn’t have to wait that long, but it’s better than July.
I hope they recommend the 72 hr fast when I go.

Jump to this post

I’m glad to hear that! Be sure and ask them about it if they don’t

REPLY
Turkey | @tomrennie | Feb 10 11:57am
In reply to @mtnmom "Thank you for the info! I’m certainly going to look into the possibility of getting to..." + (show)
@mtnmom

Thank you for the info! I’m certainly going to look into the possibility of getting to one of the Mayo locations.

Jump to this post

Or at least do a video consultation.

REPLY
Please sign in or register to post a reply.