Hyperinsulinemic Hypoglycemia

Hello Everyone!

I am not sure if anyone else has been diagnosed with this condition but, I have. It is called "Hyperinsulinemic Hypoglycemia". I have been told by 2 different endocrinologists it is from my Roux-en-Y gastric bypass. Just a heads up for anyone that has had the surgery and has the same symptoms.

A half hour to 2 hours after I eat, I get shaky, sweaty, incoherent, and sluggish. A lot like a Hypoglycemic-which is part of it.

What is happening is that my body is over producing insulin (still producing insulin for a 309 pound person) and dropping my blood sugars.

My blood sugars have dropped to as low as 33. After doing research, I have read about others whose have dropped to 25 and even passed out.

They doctors have tried medication but, the two kinds they tried did not work. I am currently undergoing more labs and will have to try injections to slow the production of insulin. If the injections do not work, they want to remove part of my pancreas. I have mixed feeling about having part of my pancreas removed because I don't want to have the reverse effect and become diabetic.

If anyone has any info on this condition, let me know. Both endo's told me this condition is rare so any information is helpful.

If anyone wants more information I will be more than happy to answer questions or elaborate. I have been kind of vague but more than happy to share any other info I have.

:) Jamie

This sounds like reactive hypoglycemia, which is actually relatively common after RNY.  Is there a difference?

Lora

According to the endo's I saw and the net. By the sounds of it they are pretty similar. I have not compared. Just research the Hyperinsulinemic Hypoglycemia since that is what I was told I have. Do you have the reactive hypoglycemia?

Just a very mild case that is very easily controlled by eating every few hours and always eating protein and complex carbs together.  I actually ahve MORE trouble with what would be just regular hypoglycemia... I get extremely shaky, lightheaded, etc. if I go too long (more than about 4.5 hours) without eating.

Lora

Thanks for sharing this information.  We need to know the risk of of developing new metabolic issues no matter how remote the possibility.  I am also hyperinsulenemic, but thankfully not hypoglycemic too.  I hope you get a second, third, and fourth opinion before having your pancreas alterd.  Perhaps there is an alternative out there.  Best wishes to you. 

I had severe hyperinsulinemia for many years before my surgery, and was actually taking medication to lower my insulin levels.  EDITED TO ADD:  I was able to discontinue that medication immediately post-op, while still in the hospital. 

Now, I do have reactive hypoglycemia as a post-op, and my doctor believes that my body is also producing enough insulin for a much larger person who is eating larger quantities in general, and larger amounts of carbs than I currently am.

Like other posters said, I have been able to control my blood sugar by eating every few hours, and I am always careful to combine protein with complex carbs.   

Good luck in finding a non-surgical solution!

without the severe low numbers- that is happening to me 7+ yrs post roux-en-Y. The surgeon says it is the wild SWINGS that cause my symptoms- which are past feeling light headed and into severe dry heaves and waking up every morning in a drenching sweat (not hormonal due to menopause) ... I have severe belly pain which has been Dx as being from gas/bloating due to dysbiosis in the bypassed roux limb (and only 80 cm was bypassed)
I have a high opinion of my surgeon and believe he did a great job in the surgery. It is the many-years-after situation where I find myself.
I have good doctors, good GI doc, a Registered Nutritionist who specializes in Gastric ByPass patients & diabetes... I am DOING "all the right things" - but there may be some RIGHT THINGS I don't know about and would be happy to hear from anyone who has ideas on either the reactive hypoglycemia or gas pains in the bypassed segments.
On the plus side, I don't know what health problems I would be facing today if I DIDN't have the surgery. So it's relative I am sure.
At my worst I thought of reversing the surgery - or having a laproscopic look as to what may be in there thats causing life altering pain.
But first- going to try to overcome the bad stuff WITHOUT "going back in" - the sad part is that I may be too unhealthy to go through a surgery right now.
MY intention is not to make others wary- just to face some long term down the road problems, that are MY problems this past year.

 Hello, I was diagnosed with hyperinsulineic hypoglycemia two years ago after having low b.s. episodes for about a year. When my daughter found me totally out of it and helped me check my b.s., it was 32.  Since that time I have worked with dieticians to reduce the number of carbs that I eat.  I am also taking Arcabose at each meal and snacks for a total of 150 mg per day. Up until recently, I was unaware when my blood sugars were below 70--in fact, I did not realize until the numbers were 50 or below.  Now I am aware when the numbers are now in the low 60s and that's a good thing to head it off early. 

If medication and carb control does not work, the only other option for severe hyperinsulinemic hypoglycemia is removal of the pancreas.  

 Jamie, 

   Any medical professional that something is rare healthwise run! They are either lying *******s who just barely passed medical boards and never continued their education and do not plan on doing so in the future. " Rare" is not rare anymore. IF it were, then how come so many conditions are at epidemic proportions in epic number of people.? I know what you going through. I wish I had answers. Its sucks. A person goes for medical help out of desparation and wanting to live and ends up  going through procedures, medications whatever only to trade off for worse health. I had my RNY 39 months ago and I still havent been able to go back to work, nor drive. Pretty much house bound and tried every supplement and suggestion short of another operation that is a band aid giving a temporary reprieve.  Please don't let them talk you into having your pancrease removed. They have already shortened you life whether you realize it or not.  I know you post back in April, of this year. I hope I am not to late. Wait to get to the point you go into seizures and having blackout spells and not knowing how you got there. I have cracked and broken ribs to prove it in the past 9 months including my face and jaw and have teeth dislocated. Can't go anywhere unsupervised and when I am able to go anywhere I have to use either a wheel chair or scooter and then not for very long. If you by some chance come with some cure, I am all ears. I check in with OH periodically. 
I dont have much trust and faith in the medical community anymore.