Blood Glucose 230-->74 In 9 Minutes

[DoozlyGirl]

Hi all,

I have recently posted details regarding blood glucose issues as the cause/trigger of my severe cognition issues, blurry vision, migraine headaches, vomiting, forced sleep, and adrenaline surges. Saw my endo today, who admitted that she is troubled by my significant swings in BG, and that the severity of my crashes, along with my previous labs, and adherance to a clean diet all point to insulinoma. Since she is about to have a baby, and is moving over 60 miles from here to another healthcare system, today was my last visit with her. I am anxiously awaiting results of my continuous glucose monitoring (which was ordered by a different local endo), which ended yesterday. I did have a lousy day on Sunday, hopefully the CGMS will point to a definitive cause, so I was surprised when she graciously counseled me on "how to choose a pancreatic surgeon, which tests I should ensure are ordered to localize a pancreatic B cell tumor and where I should have my imaging performed". She will talk to her partner about me, so the office will be able to refer me to other specialists if my CGMS demonstrated a value below 60.

I am wondering if anyone with autonomic dysfunction has already been diagnosed with insulinoma? I've read all the insulinoma sites, but those forums are not active, so I thought I'd try here. Would love to chat with someone who has been through this. Thanks for your responses.

[juliegee]

Scary My endo suspected an insulinoma and spoke about putting me in the hospital for a long period of fasting to see what would happen... I never got beyond that. I do recall that my endo thought it was a good sign that my BG would rise on it's own after a crash. I measured 50 in the office & he made me wait it out till it started to go up on it's own, 55. I guess it indicated that my body could release glucose appropriately. But why the crashes???

Sorry you are going through this. Tell us what you learn. Sending good thoughts your way.

Julie

[sue1234]

I had my EUS(endoscopic ultrasound) looking for an insulinoma, but they didn't see one. I haven't heard yet what the next step is in looking for the cause of my low blood sugar , IF they even offer a next step. I know the other alternative is usually an overgrowth of beta cells releasing way too much insulin needed for the situation.

But, yea, the 72-hour fast is the first diagnostic test(mine was negative, but that's not totally unusual), then an EUS to locate it. It is good that you have a doctor on the ball.

[janiedelite]

Best wishes on your treatment! My mom has a neuroendocrine cancer called carcinoid syndrome. She and I have worked with the founder of the North American Neuroendocrine Tumor Society (www.NANETS.net). They just published the consensus guidelines for diagnosing and treating neuroendocrine tumors. There should be info in there about insulinomas.

[HopeSprings]

I hope your answers come soon. Sounds like you're on the right path and have some good Dr's working on it. Let us know when you get your test results.

[DoozlyGirl]

Thanks for your responses and well wishes. As you all know, the waiting is often the worst part. Hyperplasia could also be the culprit, but at least my crashes have now gained the attention of two endos, my neuro, neuro NP, and dietician. I can just feel the momentum picking up and hope to actually get somewhere.

Julie, My endo said the same thing: good thing that the numbers come back on their own, but since I react to food (postprandial hypoglycemia), this presentation is rare, but well documented. So may not have to do the 72 hour fast. CGMS is quickly replacing a prolonged fast in diagnostic algorithms.

Sue, my endo stated that a calcium stimulation procedure in interventional radiology with an interventional radiologist who has performed the procedure before(all the better if trained at a large academic center) is the most reliable test for localizing an insulinoma preop, and is her recommendation if my CGMS comes back with a value below 50. Recently read that EUS captures only 77% of tumors, but captures more if done in conjunction with CT. Can't find the link now, but there are great stats in a emedicine.medscape article on insulinomas.

thankful, thanks for the heads up on the consensus guidelines. Will defintiely look those up.

Naomi, will definitely post again when my I learn my results.

Thanks again for your support. Lyn

[Guest maia]

very interesting. I have POTS and all my life i have been hypoglycemic. I found this out when i was 19 and someone i worked with checked my blood sugar on a whim. I was running around work feeling fine and my sugar was 40. I had a 3'gtt done and my sugars were all low but followed the normal curve and i spilled sugar. I was told to change my diet and did and thought it was under control until i was put on fludrocortisone and had wicked brain fog, forced sleep, nausea, inability to eat carbs... so i decided to start checking it with an old meter i had laying around. I realized the gatorade i was told to drink as much as possible of for the pots was making me have these symptoms too so i tested before i drank it... usually around 70, then within 10 minutes of having half a g2 gatorade my sugars would be over 250 and then within 20 minutes be down around 80... i told the doc, they did a 3'gtt again and refused to test at 10 or 15 minutes and told me that the results of the blood were normal and that i was spilling sugar which was to be expected(of what i dont know). I still cant get anyone to send me back to an endo.. and still cant eat normally despite being off the fludro.

Please keep us posted on this, very interesting!

Hope youre feeling well.

[DoozlyGirl]

Maia,

Thanks for sharing your experience of fludrocortisone. Have had a filled script for months, but haven't started it yet. Will definitely want to follow though with this path first.

I have read up on "hypoglycemia unawareness", when the low blood glucose (as in 40 in your case) does not properly activate the adrenegric system to provide an adrenaline rush, which is the body's way of screaming for help, to get multiple body systems to get the sugars up. This unawareness has been documented in diabetics and those with autonomic dysfunction/dysautonomia. I've also read that 3 hour GTT may not capture the hypos. 40s are not healthy, no matter if you have symptoms or not. Are you checking your blood glucose at home? This may very well provide some objective date to get the attention of a physician. You don't need a physician script for a unit and I buy my testing stips on Amazon.

Best Wishes, Lyn

[Guest maia]

Thanks doozy, i havent been checking it lately b/c i ran out of strips. ill be trying to get more at the docs in a couple days. the problem now is that my hgbaic's are normal because like lots of us, i barely eat so of course they seem normal even if i am spiking into the 250's sometimes. Im trying desperately to get someone to send be back to an endo. ill let you know how that goes. right now im just trying to figure out how to eat, what to eat, when to eat...lol.. without making my sugars spike or getting nasty pots sx's. the hypo doesnt seem to be much of an issue lately-actually the last few years, but that is interesting about hypo being sometimes a dysautomomic issue... i never had the adrenalin rushes and would have never known i was low except for that original test which was a complete fluke.

[lieze]

My mom is diabetic and she has drops like this.

She calls it double downing as she now wears a glucose monitor to alert her when her blood sugars are too low.

She also has nighttime phenomenon where she drops out of the blue in the night.

A year ago when I was staying here it went so low she seizured and she purchased and wears the continuous glucose monitor now and has it set to go off at a certain point.

It wakes her up in the night so she can get up and eat.

When her rapid drops start her monitor alarms to warn her with double arrows that alerts her to the fact she's dropping fast.

My sugars I don't believe ever go as high or low as yours but I do my own rapid drop and get symptomatic around 90 which doesn't really make sense.

I eat a low glycemic index diet for the most part and eat frequently.

I get a sensation when I'm about to drop and try to get

food fast. It can take me up to 15 minutes for that to take effect for me and although I've had some rough days with this I haven't really had the urge to test in a couple months so I think for the most part it's under control.

I do carry food with me wherever I go.