Insulinoma Testing

M M
on 3/1/10 10:18 pm

Connect the dots, la-la-la-la.

Pee_wee_hermanI saw an endocrinologist today, and apparently I went to the same doctor before back in 2007 with complaints of hypoglycemia, but I guess I just don't recall whatever came of it?  He -- unlike the Bariatric Surgeon -- seemed to recall who I was.  Go figure.  

It's now 2010, and finally... I will get testing to rule out or finally diagnose what I thought I might be dealing with, insulinoma due to nesidioblastosis caused by gastric bypass surgery.  

"With the increasing popularity of gastric bypass surgery for morbid obesity, physicians caring for these patients need to be aware of associated hypoglycemic syndromes. Indeed, hyperinsulinemic hypoglycemia has been described in these patients, primarily due to nesidioblastosis (2)."

I will be going inpatient for a 72 hour fast - 

"The standard test remains a 72-hour fast while the patient is closely observed (1); (3). More than 95% of cases can be diagnosed based on responses to a 72-hour fast. Serial glucose and insulin levels are obtained over the 72 hours until the patient becomes symptomatic. Because the absolute insulin level is not elevated in all patients with insulinomas, a normal level does not rule out the disease; however, a fasting insulin level of greater than 24 mU/mL is found in approximately 50% of patients with insulinoma. . Values of insulin greater than 7 mU/mL after a more prolonged fast in the presence of a blood glucose less than 40 mg/dL also are highly suggestive."

Okay.  I understood the process when the doctor described it -- however -- it does seems backwards, considering I typically drop drastically after eating, but since I do drop out of the sky sometimes and in the middle of the night?  

 

  • About 85% of patients present with symptoms of hypoglycemia that include diplopia, blurred vision, palpitations, or weakness.
  • Other symptoms include confusion, abnormal behavior, unconsciousness, or amnesia.
  • About 12% of patients have grand mal seizures.
  • Adrenergic symptoms (hypoglycemia causes adrenalin release) include weakness, sweating, tachycardia, palpitations, and hunger.
  • Symptoms may be present from 1 week to as long as several decades prior to the diagnosis (1 mo to 30 y, median 24 mo, as found in a large series of 59 patients).
  • Symptoms may occur most frequently at night or in the early morning hours.
  • Hypoglycemia usually occurs several hours after a meal.
  • In severe cases, symptoms may develop in the postprandial period. Symptoms can be aggravated by exercise, alcohol, hypocaloric diet, and treatment with sulfonylureas.
  • Weight gain occurs in 20-40% of patients. Because of hyperinsulinism, many patients may be overweight.
  • Presence of symptoms of hypoglycemia 
  • Documented low blood sugar at the time symptoms are present
  • Reversal of symptoms by glucose administration.
Yeah, I haz those.  Did you see the little party I threw over here?  A DIAGNOSIS?  Could you imagine? Could THIS explain EVERYTHING?!  MAYBE.

 

But, I know, I know, it might not have a damn thing to do with my pancreas.  

I may simply just have reactive hypoglycemia, and I might just simply have seizures, etc.  But wouldn't it be lovely to connect dots?

 

And, I swear, if the dots get connected, and it turns out that my self-diagnosis circa 2006/2007 was CORRECT?  I want my MD, retroactive, and about four years back, please.  And then?  For repayment -- I want answers for all 116 people on my seizure registry. There's GOT to be something to this.

PS.  Read thisholy **** right?  *thud*  (You have to read my archives.  It's ALL there.)

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vitalady
on 3/2/10 12:38 pm - Puyallup, WA
RNY on 10/05/94
You really do NOT want this dx.

There are a few ppl around who've had the sx to remove a chunk of pancreas and have reported no change in symptoms.

There was a report on this last year at ASMBS. I suspect it, as well, but I just do not want to know.

Michelle
RNY, distal, 10/5/94 

P.S.  My year + long absence has NOTHING to do with my WLS, or my type of WLS. See my profile.

M M
on 3/2/10 8:53 pm

I know, I don't necessarily want treatment, but if it could help explain some of this - I would feel a little redeemed, you know?

 

vitalady
on 3/3/10 2:05 am - Puyallup, WA
RNY on 10/05/94
Well,k pop over to yahoo grads and enter the world of RHG, where those who have it far, far outnumber those who do not

Michelle
RNY, distal, 10/5/94 

P.S.  My year + long absence has NOTHING to do with my WLS, or my type of WLS. See my profile.

M M
on 3/3/10 3:51 am

I thought I was already on the list ... maybe not?

Link me? 

vitalady
on 3/3/10 4:13 am - Puyallup, WA
RNY on 10/05/94
http://groups.yahoo.com/group/Graduate-OSSG

Go back and pick up any subjects "roll call" and you'll get a thumbnail of the faces there., some chatter, but you'll see so many of us are far, far out from surgery

Michelle
RNY, distal, 10/5/94 

P.S.  My year + long absence has NOTHING to do with my WLS, or my type of WLS. See my profile.

jadeland
on 4/8/10 11:19 pm - MD
Hi I just came across this message string. I had RNY GB in 2006 and developed severe hypoglycemia with syncope and seizures about 18 months later.  Dietary changes did absolutely nothing. High carb meals cause spikes and drops, but avoiding them does also. I wore a continuous glucose monitor for five days that showed I bottomed out during the night every night dangerously low. I had to set my alarm to eat something every two hours during the night. What a pain!!! After trying Diazoxide and Octreotide unsuccessfully, I had an 85% distal pancreatectomy July 09 at Johns Hopkins. The pathology confirmed nesidioblastosis. They were doing a study on this condition. After doing a study on me, they believe the cause is the GLP-1 gut hormone that is triggering the abnormal release of insulin and causing an enlarging of the beta cells in the pancreas. I was episode free for the first few months and even required insulin injections. Eventually the hypoglycemia returned necessitating stopping the insulin. Now I still experience some episodes although not as severe as before and now they are talking about doing a GB takedown or reversal. They hypothesize that the bypassed portion of the gut (where GLP-1 is produced) is the culprit and using that portion of my intestine again should solve the problem but they really don't know the optimal treatment and I am basically a guinea pig. Unfortunately, I had so so many severe episodes pre-pancreatectomy and so many seizures that I now have confirmed permanent brain damage (cognitive, memory and difficulty dealing with stress) and am disabled. If you are experiencing severe hypoglycemia, do not put off doing something about it. Waiting too long can cause irreversible damage.
jennnys609
on 9/6/11 6:34 am
I am experiening the exact same problems you describe.  I can only eat 4 carbs and try to eat those every two to three hours and make them protein carbs, like eggs, yogurt cheese. Otherwise, glucose spikes then crashes. I will also go low for unkown reasons, even when I think I am doing everything right. I am considering a takedown. Did you have it and did it help you?

jadeland
on 9/6/11 10:12 am - MD

Hi, sorry you are going through so much.  It really sucks that this surgery that was supposed to "save our lives" ended up disabling us.  Anyway, I have not had the takedown yet.  Hopkins has done three takedowns and I have been following their progress by email to see how it went before I decide.  I have also tried a couple of other medications that only offered mild improvement but the side effects were awful so I stopped.  Of the three takedowns, two have had a distal pancreatectomy like me, they were doing well for the first year and began experiencing a return of hypoglycemia although only moderate so far.  The third did not have a pancreatectomy and the takedown did not help her and apparently she isn't doing well.  I have just recently decided to go ahead with the takedown and they are talking about converting to a gastric sleeve to give me restriction because I am scared of weight regain.  I am an emotional eater and have been soooo depressed through this ordeal.  I really don't trust myself not to resort to food for comfort at this point.  I feel I need the restriction.  I figure even if it gives me moderate improvement it is better that where I am now. 

This summer the docs have had me try a strict Atkins type diet and it does help as long as I am sedentary but if I am active at all I crash.  I need the carbs for energy.  So I am learning to modify it around my activity level.  A combo I carbs and protein just before I am active seem to do ok.  I have to nibble through my walk too.  I don't know how activity affects your blood sugar but even a walk through Walmart makes me crash.  It affects me more than food.  I have to constantly think about what I will be doing and plan what I eat ahead of time to avoid a crash. 

I have been on long term disability since 4/09 and was just approved for SSDI at the hearing level FINALLY!!!!  I had no trouble at all.  It just took so long to get a hearing.  So if any of you are unable to work, it IS possible to get SSDI with this condition.  

I will keep you posted on the progress of my takedown.  Please keep me posted on your condition.  There are medications to try.  Octreotide, Diazoxide, Acarbose, Verapamil.  Some have success with these meds.  They are worth a try before you attempt surgery.  I have been on Acarbose for about a year and a half.  It definitely reduces the severity of the spikes and drops.

Sounds like you have a good handle on your dietary restrictions.  I hope you have a good endocrinologist.  Keep in touch and best wishes. 

M M
on 4/8/10 11:23 pm
 Jade -

Thanks for this --

Can you email me?

[email protected]

I'm going through the nesidioblastosis testing now -- but -- the doc suggests surgery isn't the path we would take.


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