Hyperinsulinemic Hypoglycemia with Nestidioblastosis After Gastric Bypass Surgery

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Comments

[Kim]

If you want any first hand information on this diagnosis please feel free to ask. I'm one of the individuals noted in this study. (I'm the 39 year old female) I had my surgery over three years ago where they removed more than half of my pancreas. I've been doing much better, but still have some lower blood sugar levels. The docs said they wouldn't worry unless I went below 60 however.

If you think you may have this I can't recommend Mayo enough. They were wonderful. Dr Thompson was my surgeon and a wonderful man.

[kim]

I was wondering if you could tell me a little about your pancreotomy? I to am supposed to have this opperation but I m very aprehensive. I am glad that you are doing much better but I have heard that some people go back top the same symptoms after the surgey. I can't emagine going through a major surgery like that and it not working but I can't emagine living like this for the rest of my life either. Could you give me some details about the surgery like how long are you in the hospital? Was there alot of pain? Was there any complications? I heard that most people have to enter into ICU after for a few days, is that true in your case? Thank you so much ahead of time for taking your time to answer my questions and I hope all is well with you..Kim

[MM]

I hope you get some answers, Kim...

[Kimberly]

I am a 35 year old woman who is 2 years post op RNY. I had lost 130 lbs within 9 months of my bariatric surgery. I was very happy until I developed gallstones. Just shy of my first year of losing all the weight - I had my gallbladder removed.

At this point - I started to have issues with sever right pain where my gallbaldder used to be (I call it my phantom gallbladder attackes) which traveled under my left lung and into my right kidney.

After seeing a number of doctors and going for countless tests - I was asked to seek the advice of a Psychiatrist. Knowing that I am a completely SANE person - I ignored this advice and went on with my miserable life

In July I started with kidney problems both infections and stones - and then October came...

In October I started with spells of sweats, trembles, confusion and nausea. The nausea I was used to - I've been on Zofran for over a year now for my phantom gallbladder attacks.

My primary doctor gave me a blood sugar monitor and low and behold my sugar was dropping as low as 28 on somedays. Armed with this new bit of information I headed back to the surgeon with proof. Again - I was brushed off - new doctor new test.

I went for a mixed meal test over 3 weeks ago. I'm supposed to get my results this Friday. I have 2 fears - (1) they find nothing and tell me to see a Psychiatrist again or (2) they find that they have to remove some or all of my pancreas.

On Sunday - I spent 4 hours with sugar that would not rise above 40. The more gluclose I took - the further it would fall. I went to bed that night thinking that I wasn't waking up the next day - the only way I could have fallen asleep that night was to let myself pass out - I couldn't fight it anymore.

I have passed out 4 times in the last 3 weeks (once waking up in a rescue - only to have the ER nurse accuse me of being drunk). My condition is becoming increasingly worse and apparently I've become gluclose resistant. I no longer get the sweats or trembles instead my hearing becomes incredible, my heart pounds and get a drunk like paralized feeling. I cannot communicate at all.

Please - if there is ANY help ANYONE can offer me - please respond. My email is Kimberly9801@yahoo.com.

Thank you!
Kimberly

[Kimberly]

Can anyone recommend a Doctor at Joslin in Boston??? I posted a while back and now I've started with seizures. I'm seeing too many doctors and the hypoglycemia is getting worse! New tests and no answers....
thanks :)

[Kimberly]

Well, after years of trying to get a diagnonsis I finally have: nesidioblastosis (well that's today - who knows if the doctors will change their minds). So, my surgeon, endro and now a pediatrician need to form a team and decide when I if I should have 90% of my pancreas removed. I just have a couple of questions:

1. how long is the operations?
2. how long are you in the hospital for?
3. how long is the recovery once you're home?
4. will I be able to resume my job or am I going to be out of work indefinately?

I've been so stressed lately at work which is only driving my suger even lower. I've had several doctors telling me that the stress is affecting my sugar. I have been losing my hearing when my sugar is low and my heart pounds. I have a seizure 4 weeks ago not to mention the depressionand resent sleepwalking!!!!

Anyone with some answers - please help me, I'm desperate!

Kim
kimberly9801@yahoo.com
(sorry for all the spelling errors - I'm working with 1/2 a brain)

[Click]

OMG I could have written these same words! I just this past Thursday had vein testing done to confirm which portion of my pancreas was causing my severe hypo incidents (which have included seizures as well)!!

I found out TODAY that the test was positive, the tail is the portion causing the most problems for me. I have been using Proglycem with success for about a year but the last few months it has gradually lost it's effectiveness. I am 6 years out from my RNY and in Kansas (can I be any further from Mayo-LOL?).

I am however blessed to have found an awesome endo who has fought hard for answers for me and led me down my current path with RESEARCH to back it up. It took a bit to find someone to do the actual vein testing to be able to show EXACTLY which portion of the pancreas is screwed, but it's been worth it. I see my surgeon next week to discuss the WHEN of when I'll have surgery. I, of course, know no one as severe as me and don't know any details of the same questions you've posted Kim so I'm interested to see any replies as well.

One plus is that I just this month also got approved for one the continuous glucose monitors and am VERY excited about the freedom that machine will give me. I'm hoping to have it here in about a week or so. :-)

Sitting back to watch to replies of HOW the actual surgery went, what to expect etc. :-)

Hugs from a fellow RNY hypo sufferer!

[Kimberly]

Well, after almost a year - I have now been asked to seek the advice of the endo's at Joslin Diabetes Clinic. However; I do not or ever had diabetes (try telling that to someone there when you make an appointment).

Anyone know how difficult it is to drive 2 hours away to see a new doctor when you can't even drive 2 blocks??? I just don't get these doctors that don't want you to drive, but then arrange an appointment with a doctor from out of State? They are completely out of touch with people sometimes. I can't even dial 911 when my sugar is 32 - never mind drive to Boston.

Well, I've been diagnosed by 2 doctors - both with separate problems; however - I can't seem to get these diagnosises in writing. I am a neurological mess. I have ticks, temors, blurred vision, my legs and arms go numb all the time, forgetfulness, etc. I'm sure everyone can relate. Sorry for the spelling, but at this point I'm lucky to be able to even turn the computer on.

Joslin's appointment is a month away. I have to be out of work because I can't drive nor function in the office. Work cancelled my health insurance on me with less than a 30 day notice (even though I'm out on a medical disability and note). The stress can't get any worse at this point.

Has anyone woke up at night either sleep walking or hallucinating?

[Kimberly]

Just wondering if anyone has done some investigating regarding adrenal gland deficiency? Hypoglycemia and low blood pressure seem to go hand and hand with the adrenal gland. I know for myself, that I haven't had my period (sorry guys!) since June of this year. I also suffer from Vit. B, B12, and D deficiencies. My red & white blood cell count have hit rock bottom also. My last blood work stated that now I have a low Bilirubin count (whatever that is). My blood pressure is low and sometimes when I stand up I feel like I'm going to pass out - and all my senses fail except for my hearing.

I think we should get a list of questions together to ask eachother, those of us that suffer from this. There has to be some link. All I know is that yesterday, without warning my sugar dropped to 37. I literally felt like I was going to die - and the only people who truely understand this feeling are the people that write into Beth's website. I have now bypassed the sweats, shaking, numbness and hunger. When I drop - I litterally drop....

Thank you Beth for having this available to people like me. At least I know that I'm not as crazy as the doctor's think.

[Anna Fabian]

Is there an online site for this condition that we can chat back and forth?
I have same as the rest of you but with elevated live counts.
Has anyone else had this to happen?

[Anna Fabian]

I meant liver count! LOL

[mm]

Maybe a Yahoo group?