Does anybody know a great RH or revision specialist

ashleyyy
on 11/17/16 6:49 am

does anybody know of a great, well educated, experienced reactive hypo specialist? Every specialist, endo I see that is coming with high recommendations doesn't have experience with how severe my RH is and doesn't know what to do.

im only able to eat literally 28 different things, It impacts my life so severely that I'm at the point where I need my surgery reversed, and/or part of my pancrease removed.

 

Does se anybody know of a great endo who specializes in severe RH OR a great BS who is well versed in revision surgeries.. preferably in the Pa/Nj/va/DC/md area.

thank you!

H.A.L.A B.
on 11/17/16 9:32 am

I am sorry you are dealing with all those things.. 

but how about you try to be positive? I know it sucks...

 

with my RH and food allergies., SIBO and IBS  i have maybe 10 items that I can eat. Yeas - initially I cried....Then I put my big girls panties on ... found recipes taht I can make using just those items....

my diet can be boring....but I make it interesting... adding different herbs and spices makes the chicken taste yummy. 

I bake my own "cookies and bread" (no grains - just using coconut or almond flours) and found yummy snacks made from nuts...

meat, chicken,fish eggs...no starchy veggies, good fat like olives, avocado... nuts.

some fruits (berries - once in awhile).  

there are so many things I can make just using those... 

Maybe you can get revision - or maybe you can';t - in a meantime try to make your life better by finding ways you can "do" with the 28 items...that you can..

good luck. 

 

Hala. RNY 5/14/2008; Happy At Goal =HAG

"I can eat or do anything I want to - as long as I am willing to deal with the consequences"

"Failure is not falling down, It is not getting up once you fell... So pick yourself up, dust yourself off, and start all over again...."

Citizen Kim
on 11/17/16 10:28 am, edited 11/17/16 2:29 am - Castle Rock, CO

If you come across any surgeon that wants to do a take down or touch your pancreas, RUN!!!   Aren't you like a year out?   It's ridiculous to even suggest surgery for this.

RH is manageable by diet and honestly, 28 things is awesome!   Staying off carbs will work just fine and if you have to have them, make sure it's vegetables or coarse grains, no fruit or white carbs and you MUST eat protein with the meal.

Many of us have this at one time or another and for most of us, it's a phase and certainly not worth having surgery for!!!!

Proud Feminist, Atheist, LGBT friend, and Democratic Socialist

ashleyyy
on 11/19/16 2:48 pm

I am 26 months out. I'm not sure but I think that this might be a bigger issue since I have PCOS.  (My endo had forewarned me back in 2006 ((after reviewing the results of my 3 hr glucose tolerance test)) that my pancreas over produces/dumps massive amounts of insulin, and at some point in my lifetime my pancreas will die due to overproduction/exhaustion).. 

My 28 items are; VEGGIES:peppers, lettuce, broccoli, cauliflower, mushrooms, spinach, tomatoes, cucumbers, avocado, celery,onions, PROTEIN: eggs, chicken (which I thoroughly dislike), beef, bacon, tuna DAIRY: whey isolate,hard cheeses, sugar free/lactose free creamer, cottage cheese and ricotta cheese  FRUITS:lemons, strawberries (2 or less) blueberries (10 or less)-- berries must be eaten with/after a source of protein OTHERS: fresh & dried spices, pam spray, coffee, splenda/sugar free flavorings

It's very hard, I lost my job in August due to my RH. I absolutely have to eat every hour or two or I start to lose cognitive functions. My bloodsugar would drop to 35 regularly at work. I have to carry around a glucagon needle with me, in addition to glucose tabs/liquid (since I used to black out regularly) but now I know when it's coming.  My husband and I now have a very limited social life, since we are limited on restaurant options, my new bedtime (from exhaustion), and that I cannot do anything physical- I cannot walk up a flight of stairs without needing a spoonful of cottage cheese immediately. 

Is this normal, and what you go through daily as well? How do you do it - I absolutely have NO ENERGY! And what do you mean by phase? does RH somehow resolve itself?

seattledeb
on 11/17/16 7:23 pm

What do you eat? How often? Signs/symptoms?

Many of us here have lived through RH. Mine was very difficult from about 18 months to about 3 years out.

(deactivated member)
on 11/18/16 12:58 pm, edited 11/18/16 4:58 am
(deactivated member)
on 11/18/16 1:16 pm, edited 11/18/16 5:17 am

i totally respect Halas experience with this dilemma.cant relate much myself ... probably what i like to eat is mostly complex ( non insulin spiking) natural grains and carbs and of course veggies and fruits

i usually cant stomach meat ... or even clams fresh conch crabs and very fresh fish . i get offered all of these delicious delicacies from my fisherman dock tenants without cost .. it makes me so sad to have to turn them down.

today i ate three fresh  eggs on a toasted bagel for a six am breakfast : with salt pepper ketchup and hot sauce ... boy was it good . its now 4 pm and i havent eaten again except for fat free tostones - usually twice fried mashed plaintains  ( with garlic / butter buds salt ) . 

i cook em in the microwave 3 min peel and slice em then mash em with a bottle : put garlic salt on top bake briefly .... yummy yummy yummy . i considered buying an "air fryer". then realized it still involves oil... much better in my opinion is very dry oil free alternative : tastes great but i suspect u eat a lot less just cuz its harder going down ...what do u guyz think? 

ashleyyy
on 11/19/16 3:02 pm

I am 26 months out. I'm not sure but I think that this might be a bigger issue since I have PCOS.  (My endo had forewarned me back in 2006 ((after reviewing the results of my 3 hr glucose tolerance test)) that my pancreas over produces/dumps massive amounts of insulin, and at some point in my lifetime my pancreas will die due to overproduction/exhaustion).. 

My 28 items are; VEGGIES:peppers, lettuce, broccoli, cauliflower, mushrooms, spinach, tomatoes, cucumbers, avocado, celery,onions, PROTEIN: eggs, chicken (which I thoroughly dislike), beef, bacon, tuna DAIRY: whey isolate,hard cheeses, sugar free/lactose free creamer, cottage cheese and ricotta cheese  FRUITS:lemons, strawberries (2 or less) blueberries (10 or less)-- berries must be eaten with/after a source of protein OTHERS: fresh & dried spices, pam spray, coffee, splenda/sugar free flavorings

When first discovering this issue in Januaryish? about a half an hour after eating, I would start to get tired, very sweaty, heart palpitations, and lose cognitive functions, become mute, super anxious, hysterically cry, and pass out.  Depending upon what I ate/ where my bloodsugar was at determined the severity of my symptoms. 

I lost my job in August due to my RH- Which i'm pretty sure is illegal but... :( I absolutely have to eat every hour or two or I start to lose cognitive functions. My bloodsugar would drop to 35 regularly at work. I have to carry around a glucagon needle with me, in addition to glucose tabs/liquid (since I used to black out regularly) but now I know when it's coming.  My husband and I now have a very limited social life, since we are limited on restaurant options, my new bedtime (from exhaustion), and that I cannot do anything physical- I cannot do chores, or even walk up a flight of stairs without needing a spoonful of cottage cheese immediately. 

I see you said it WAS difficult?! so did your RH resolve itself? How did that happen?

seattledeb
on 11/19/16 8:26 pm, edited 11/19/16 12:27 pm

What helped for me was  eating every 2 hours, only eating carbs  if I ate any protein +fat, tracking my food, and always having food with me.  I remember the symptoms you describe..that scary sense of doom anxiety and losing the ability to speak or think. Just absolute panic. Sounds like yours is even more severe and frequent..and for that you have my total sympathy.

I can still have these symptoms if I forget to eat or sometimes when I get sick with something else but it's much less common. My last one was eating oatmeal by itself and crashing so fast.  It had been a few years and I "forgot" how deadly that is.

I do know that there have been many women through on OH having the surgery with a precondition of PCOS. Hopefully they will chime in.

I wish you luck in finding the answer.

siberiancat
on 11/22/16 11:30 am - COLUMBIA CITY, IN

You talk about exhaustion and no energy.  What are your iron and ferritin levels?  I found my iron level was OK but my ferrtitin level was nonexistant.  I had iron infusions and feel much better.

I am gluten intolerant and have RH.  I also have a lot of nausea.  My food choices are very limited.  I rarely eat out  (never fast food) and often eat the same breakfast, lunch and supper daily.  It can be boring - but not getting sick or nauseated/bloated  and keeping my blood sugar from plummeting is worth the boring eating.

I don't eat anything with more than 7 grams of sugars unless it is with high protein/fat meal.

My general rule is 1 gram of protein for every 10 calories.  I try to keep under 70 grams of carbs a day.

I'm 7+ years out, I'm enjoying life.  I don't live to eat anymore but definitely eat to live (for nutrition and health) not enjoyment - like I did when I was morbidly obese.

My bariatric physician helps with my RH, but I've found personal experience, daily food log, and research to help me the most - since each person's experience is different and personal - AND changes the further out from RNY that we are.

Best wishes,

Penny

 

 Penny
Highest Weight 255  * Wt loss includes 19 lb lost before surgery

    
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