My hypoglycemia visit to Joslin (long)

I have posted here over that last couple of years about my post-op reactive hypoglycemia and have had a lot of helpful information in managing it from the boards. I have been frustrated with some of the medical professionals lack of understanding with this issue.

On Friday I went to an appointment at Joslin Diabetes Center in Boston with Dr Mary-Elizabeth Patti who I have read information on that she has studied the problem of post RNY hypoglycemia. All I can say is WOW!!!

I started by having some lab tests done and then saw Dr Patti. She spent over an hour with me taking a detailed history and asking lots of questions about my weight loss, where I carried my weight, family and personal history, hair, skin, diet and about everything else. She then did a through physical exam. Part of that exam included taking my blood pressure lying down (121/70) then had me stand up and took it again (90/60). Weird, huh? I would have thought it would be higher standing…… She repeated it in both positions later in the exam with similar results. I do normally (even when very heavy) have lowish BP.

Again, more questions about my hair, body and head. I have never been a particularly hairy person, but honestly haven’t shaved my legs in years. Why shave what isn’t there? I only have about 4 underarm hairs and very little pubic hair. I do have less body hair than I used to, but I figured that was due to menopause. The hair on my head is very normal (although at 55 I am starting to get a few gray ones!) Apparently a lot of these questions, including the odd blood pressure readings, are related to adrenal function. From what I have read adrenal problems can exacerbate hypoglycemic issues as well.

Dr Patti went over a 7 page handout with me titled “Hypoglycemia after Gastric Bypass Surgery". I am certainly willing to scan it and send it to anyone that would like to read it if you PM me your email address. It includes treating and preventing low blood glucose. She wrote me a prescription for Abarbose to take at the beginning of each main meal and for Glucagon Emergency Kit that I will have my daughters trained to administer if needed.

She ordered MORE lab tests, including testing for adrenal dysfunction, and said that my treatment would be different if that came up positive. After going back to the lab I then saw a nutritionist for almost another hour. I got to Joslin at about 1:30 and didn’t leave until after 5. None of that time was sitting waiting! I was completely exhausted when I left and had a brain that just wanted to hit the internet looking at information about adrenal dysfunctions.

One of the things that I was told to eat was “Extend" bars or snacks which contain uncooked cornstarch which help to prevent low glucose levels over an extended period of time. The nutritionist gave me coupons and a couple of samples. There is also a coupon available on the Extendbar.com website. They are available at Walgreens so I went there and got the Caramel and Chocolate Drizzle snacks. I really liked those! They are like mini rice cakes with a sweetish drizzled topping. I have ordered both from Amazon.

Here it is Monday morning and my head is still swimming. I hit the grocery store and spent lots of $$ buying all the things that are on my new diet plan. I still have questions that I am jotting down for my next appointment and will continue to research things that come to mind on the internet.

I’m sure that I haven’t covered everything, but this is probably long enough anyway!! 

Martha

sounds like a very productive visit! keep us posted. Judi

I would love a copy of that handout, but can't figure out how to PM...

Just under any of my post**** the "Contact" button. That will send me a message that doesn't post to the public.

Martha

Thanks so much!  I can't believe I haven't had to PM anyone before.  Duh! 

Sounds like an amazing visit!  I'm going to message you for the info to share with my family.  My sister is a DS'er who has spent time in the ICU with hypoglycemia. 

Thank you for sharing - I hope your new plan is sucessful!

Laura

Glad you found someone who can help. Keep us informed on your progress and blood test results please. Information is our friend.

Wow, that's interesting! What specifically was she looking for regarding your hair? Just to share the (tmi) I thought I'd point out what my "hairyness" issues are and what aren't... I do get sparse under-arm hair. To give an example of how much, I shave my pits at the beginning of summer, and at the beginning of school in august,, but I wear under-arm baring clothing from the beginning of summer until around October. I don't need to shave more than that, and I stand in front of a classroom full of teenagers. I also shave my legs that often, and that's only because I'm aware that if you LOOK CLOSELY you'll note that I have sparse hair there, and well.... I teach teenagers. I've been known to go years without it being noticeable unless you're up close and personal. I have exactly SEVEN chin hairs that I pluck once a month. Well.... one upper lip, three on one side of chin, two on other, and two beneath the chin. My hair on my head, however, defies this by growing more than an inch a month. Lately I've been dying a swath pink, and at 3 weeks after, I actually measured roots to pink... and it was more than an inch.

Like you I've always had low-ish blood pressure, even at 350 lbs. I also have higher blood pressure seated than standing, just like you. I get a drop of both numbers if I stand up.

My endocrinologist gave me a glucagon kit, and I have two of them. One I give to the school nurse during the school year and one I keep at home. When we go on long trips I bring it with. Not sure if during my cruises I should mention this to the medical whomever and have them hold onto it, or if I should just have it in my room. I can refill that prescription one more time, and bring two with me for my two cruises if doing both makes more sense. Though I generally know when it's bad, and try to carry glucose tabs with me at all times just in case.

What did they want to know about your skin? Very curious. My skin is oily on my face, dry everywhere else.

I'll have to look into the adrenal functions stuff too. Wonder if there's anything in there that might explain my recent collapses. Both times my blood sugar was fine, but it is a curiousity.

What kind of stats do the "Extend Bars" have? I've been doing "pillow snacks" to see me through the night, but lately my hunger at night makes it really a forced food, I don't want to eat a protein/fat forward anything before sleeping. Perhaps the extend bar might be the best "pillow snack" to see me through the night.

I'll PM you my email address. Thank you so much for sharing. My endocrinologist gave me a scrip for the glucagon, test strips and lancets but no other meds.

I scoured the Internet for some of these same questions when I got home! This is a quote from one that I found again quickly tonight:

Your adrenal glands produce a variety of hormones that are essential to life. The medical term adrenal insufficiency, or Addison's disease, refers to inadequate production of one or more of these hormones as a result of an underlying disease.

Signs and symptoms of adrenal insufficiency include:

• Fatigue
• Body aches
• Unexplained weight loss
• Low blood pressure
• Lightheadedness
• Loss of body hair
  

Another website is this one , but it doesn't mention the body hair loss. http://www.womentowomen.com/adrenalhealth/adrenalhormonedysfunction-symptoms.aspx#labtests It does specifically address the blood pressure that goes DOWN upon standing when with most people standing BP is higher and not lower. The skin questions were more to do with coloring, white patches, dark patches, etc. None of those seem to apply to me though.

The Extend products are supposed to give you 9 hours at night and 6 hours during the day of stability in blood sugar. I haven't researched stats yet as I have just been crazy busy looking at all the other stuff!!

I hope this has been helpful!!

Martha

That is very interesting and good information. My son has a glucagon kit, luckily we have never had to use it and I hope you don't either. The training seems simply enough though.

I hope you are able to get some answers and treatment!