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I 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.

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 this, holy shit, right?  *thud*  (You have to read my archives.  It's ALL there.)

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24 February 2010

Fail.

I saw my original bariatric surgeon today at Tufts in Boston, MA.  (Remember my last post about this.)

If you recall - I was contacted by the doctor himself- because someone from the internet (Hi!) contacted him about ME.  That person suggested to him that he should check in with ME.  He did, and asked that I make an appointment with his NP.  I didn't do it immediately.  I was pissed that he suggested seeing a nurse.  I need a doctor.  

Instead, I called another hospital's bariatric program atBeth Israel Medical Center, and asked about getting seen THERE, they asked me for $500.00 and I passed on it.  That hospital has been suggested to me over and over again by my MIL because she Loves Her RNY with a passion.

I went today to the original surgeon - after calling the other day - and telling them I had "an ulcer."  I was surprised for the actual appointment with a doctor!  (Though I will note that the doc said later, that "I can always get an appointment with him, " this, after he told me to "make appointments with the nurse.")

I weighed in (GASP!) and went in the room and chatted with his assistant.

She asked, "So, you're here for some stomach pain?"  

I explained, that yes, there was burning and pain, but it's intermittent, and I thought it might be an ulcer.  I told her that the pain was the real precipitating event to MAKE THE CALL (again) to see a doctor.  This feeling was NEW and EXCITING and might be worth a look.

"So, there's more?"  she asked.

I share that it's a long story, but what does she want to know?  She looked terrified.

I explained my very quick history, pretty much LIKE THIS -  which I had done - one year ago in the same place -

• RNY gastric bypass 4/2004
• Miscarriages 2005/2006
• Pregnancy 2006
• Vitamin issues
• Anemia > iron infusions (Initiated by the OB/Midwives!)
• reactive hypoglycemia 
• neurological symptoms 
• complex partial (was thought to be a stroke)seizure on the birthing table 
• continued neuro issues
• continued hypoglycemia
• visit to the PCP who > sent me to PSYCH > who diagnosed me with cognitive disorder and memory issues "likely from RNY gastric bypass"
• continued neuro issues
• grand mal seizure in front of plastic surgeon at BIDMC
• testing, no diagnosis, issues continue
• grand mal seizures continue until 2/2009 when I was put on Phenytek during 2^nd hospitalization
• complex partial seizures continue daily (currently)
• neuro issues continue
• weight gain
• hypoglycemia continues
• "ulcer" feelings begin
• Here we ARE.

The assistant takes as much of this as she can with pen and paper, nodding and empathizing a bit.  "Wow."  I know it's a lot - but I cut it down as much as possible.  

She suggests that they'll "send me home with ulcer medication," and "set up an endoscopy, let me send in the Dr."

"Hi!  I'm Dr. So and So."  It's been a long time, he has no idea who we are. (Mr and I are both patients of his.)

He explains that our files have been archived, and he doesn't have any history on me.  I repeat the run-down of issues, much briefer, as he isn't having it.

He tells me that hypoglycemia is a dietary issue, and to "follow the prescribed diet," to cure it.  I explain that I've been there, done that, worn the CGMS.  "And it didn't stop?"  Uh.  He goes on to say "diet."  And, that is simply it.  Go on a diet.  He also suggested I "see a dietician" (for the umpteenth time) and his endocrinologist.

That topic dies, I tried to discuss more, but, he wasn't having it.

And, he made me feel like I was a complete moron, and a hypochondriac.  Which is funny because I avoid going to the doctor for anything, and I shrug off most illness.

He goes on to say there is NO REASON for seizures due to gastric bypass unless there were VITAMIN DEFICIENCIES.  

He asks how my blood labs have been.  

My last draws were decent, aside from Vitamin D, as far as I know.  These were taken within recent months.  He says he'll pull my labs from my last visit to their clinic, which was LAST YEAR.  (When I saw Dr. Stiles, who was suggested to me from Dr. Jacques from Bariatric Advantage, and she's gone.)

I ask - "Is it possible that an UNDETECTED deficiency at some point could have triggered enough damage to cause seizures that continue NOW?"

He says, "I'm not a neurologist."

I ask - "But, is it possible that an UNDETECTED LOW THIAMINE level at some point could cause seizures that continue?"  He said, "Yes."  

So, seizures COULD potentially be caused my undetected vitamin issues?  Yes, but...  He asks, "Have you had follow-up and labs drawn?"  I say that I have been to hematologists, endocrinologists, PCPs and OBs, so YES I HAVE.  (So, I'm a liar.)

He addresses the pouch pain, and I'm to have an endoscopy.  /end topic.  The nurse said things like, "fistula" and yummier issues.  I still say, simply, "ulcer."  I have an appointment for the procedure.

Then, he addresses weight.  

He asks, "Is your weight stable?"  

I say "No. I was 150 lbs. -- I've gained XX lbs in the last YEAR."  

I add on that I feel that it's triggered A LOT by eating to control the blood sugar, in conjunction with brain-numbing drugs for seizures.  He completely disregards this, and tells me to "diet."  They're going to "teach me" how to eat the "right things."  (This might be where I started to lose it.) 

I tell him that I feel that I struggle EXTRA because my sugar tanks regardless of intake, and I am constantly feeding the beast.  He tells me to "diet."

He was starting to try to wrap up the conversation - and I just ASKED - "Could he reverse my RNY?"  He flat out said no.  He said, "You can't undo it.  It's done.  And, it's just not that easy.  And if I did, you would regain everything."  I said, "My quality of life is THE SUCK (basically) does that make a difference?"  Nope.  

I ask about revising.  Could I have a duodenal switch or a band on my bypass to slow down digestion?  He looked at me like I kicked him.  "Wait, you want what?"  No, "we can't do that," or something else, basically trying to explain to me that it's just not something that surgeons DO.  

He ended the appointment.  No lab slip, no testing, no suggestions, no empathy and ZERO answers.  I felt like I wasted my entire day, DH took the day OFF with one day notice, the 1+ hour drive, the parking garage and co-pay entirely, and I left.

Bob and I discussed on the way out, that it was Much Nicer when we went in there at 320 and 370 pounds respectively and were preparing to have weight loss surgery, the sales part is a lot different than the return part.

PS.  It's ironic that this post has Google ads for their program below.  LOL.

MM = PRODUCT INSTIGATOR. REVIEWS, RANTS + RAVES!

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• Bolthouse Farms Perfectly Protein Mocha Cappuccino

Vanilla is close to the top of the list of my favorite flavors -- my fave protein supplements have been mostly vanilla based.  Add espresso to that, this HAS to be a winner.   I got my hands on an advance sample of CLICK Vanilla Latte.  And, completely ignoring the fact that my espresso machine is dead, this was the perfect day to try it out.

As with any CLICK protein flavor - the suggested method of serving is to add the protein powder to 12-14 ounces of water, and mix well either cold, or warm it up.  I added 14 ounces of steaming water from my hot tap on the water dispenser.  Alternatively, I could have used my "Cocomotion," but it's in the cabinet.

The result:

It was lighter in color than the Mocha Flavored CLICK, more like a cappuccino.  It even frothed, but that could have been from the psycho blending I do to it.  It definitely tastes like a vanilla latte, perhaps not the way I order it (Hi there extra shots!) but very taste-friendly to the espresso virgin.

 
 The verdict.  HELL YES.  Thank you CLICK, I loves it. (Don't tell Beth Smith, but I think I prefer this one to the Mocha.)

• Product - CLICK Espresso Protein Powder Vanilla Latte Flavor
• Price - Pre Order on Amazon
• Via - Amazon
• Pros - 15 grams of ass kicking protein that you could never guess was a protein drink.
• Cons - Not available yet, you have to wait.
• Rating - Pouchworthy, MM.
 

Short history:  I had gastric bypass in 2004, originally weighing in at 320 lbs.  I hit a low of 149 lbs, and have seen every number from 149 - 210 lbs. since then.  My highest regain came during a pregnancy in 2006, and I was able to lose the weight again, and consequently regain some.  It's been a game of up and down since that point.  My husband, also had gastric bypass in 2004, going from 370 to a low of 165 lbs.  He's been hovering from 180-195 lbs, and is currently at his highest regain since surgery now, somewhere in the 195 range, though he won't tell.  We have family members who have also had gastric bypass, with varying results.  

It's become increasingly obvious that there is a NEED for more discussion about a touchy subject out there in the world of "life after weight loss surgery."  

REGAIN.

You may find that there's not much out there about the topic, without folks screaming "FAILURE!  FAILURE! YOU ATE THE DORITOS NOW YOU PAY, SUCKER!"  The land of post weight loss surgery peers can be really harsh.  For some bizarre reason -- empathy melts away with weight loss in some post-ops, and when they're at goal and tossing around their stats -- you're tempted to just -- QUIT.  

Or in my case, get flustered and have some cheese and crackers.

Regardless of my own level of success or regain -- I feel that we need to understand regain better. 

To avoid, to repair, to get answers, and to ultimately - get past it and find a place where we can healthfully maintain a NORMAL BODY WEIGHT without drastic dieting measures, obsessive exercise or eating disordered behaviors.

This, is where I want to talk about it.  Join me.