all_for_my_7_kids

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It has been since April since I have written, and so much has happened. Here is what I have learned about my Hypoglycemia...

I can't eat most foods. Sad as it is, I have learned what will send me up, and what will send me down.

Foods that spike my blood sugar:

Any food with fat content, including red meats, sauces, anytthing fried, gravys
Anything with bread
Anything dairy: ice cream, milk, whipped cream, yogert

Foods that drop my sugar after a spike:
Ice cream, mayo, milk, caramel

So, what have I learned...obviously not enough. I at a Jr Bacon Cheeseburger tonight - without the top bun. Sometimes you just have to have food to CHEW! Salads just don't cut it three times a day...

But, I have figured out that I can drink the premium protien drinks (35 grams protien) in the morning and take my vitamins...and I do much better.

High blood sugar for the week:  219. Not too bad.
Low blood sugar for the week:  39. Yucky.

Can't drive any more. But no seizures since June!

I am sick of Doctors. I have really taken all doctors off the pedestal they were on before and have decided that they are just skilled workers, and just like every other skilled worker they have things they don't do well - even in the practice of medicine.

I am a harpist. For years I would practice and practice and practice until my pieces were performance ready. Practically perfect, actually. I would have never imagined performing without the level of perfection that I would achieve.

But I guess that's why they call it medical "practice". They may have a few skills that are perfect enough to perform, but I have yet to meet one who can tell me what is happening with my body.

It took going to a masters level dietitian to make the sugar spikes and drops stop.

So - here is the history of the last month.

I ended up in the hospital again a few weeks ago...pain in my abdomen. I've had the pain multiple times over the years, thinking that I'm passing a kidney stone. This time it wouldn't stop and I had to have some help with the pain. Spent all evening in the ER, testing galore, blood testing, urine testing...they found NOTHING.

I just happened to have an appointment with my endocrinologist. She decided I had Hyperinsulinemic Hypoglycemia with Nesidioblastosis, Dumping syndrome, and severe hypoglycemia due to gastric bypass. But when I asked her what I should do differently, she said, don't eat sugar. So I stopped. But the hyperglycemia continued to happen. Painful hyperglycemia - 280 - 350 on my blood glucose. My heart pounding out of my chest...wanting to pull the hair out of my head...my hands ice cold...having very difficult times breathing. The hypoglycemia continued to occur, and she didn't believe that the seizure activity that I have now been experiencing with my low blood sugars were related to my hypoglycemia. So, she wanted me to see a neurologist and a cardiologist, claiming that the symptoms had nothing to do with each other.

She wanted me to do a 72 fasting glucose test and then a glucose tolerance test. But, because the insurance won't pay for anything to do with my gastric bypass, I was left to do it on my own and hope to get to the doctors for a blood test before I had a seizure and had to be taken to the ER.

So I started fasting. 24 hours...35 hours...48 hours...52 hours and my BGL never dropped below 63, and it would bounce itself back up to 80 if I would just wait long enough....

So finally after 61 hours with my blood sugar never going below 62, I called her and asked if I could just eat. I knew I didn't have fasting glucose problems. They said yes, because I wasn't meeting the point of the fast which was to get my blood sugar under 50 before I tested. So I ate! I had a roasted chicken wrap.

Then it happened. 90 minutes after easting my blood sugar was over 260 and then an hour and a half later - I was down to 42. I ran to the doctors office and asked for a blood test. I was refused. They are all fasting tests.

But there happened to be a nurse there who started talking to me. She was post gastric bypass 4 years. She said that the second year after that she started having the same problems. After going doctor to doctor she finally had a doctor that tested her thyroid. He put her on thyroid medications and she never had a problem again.

So I went home and did some homework on Thyroid disease. That was when I found Grave's disease.

I read it and felt like I was reading my journal.

"Hypoglycemia, a condition of low blood sugar, can occur as a transient condition in patients with Graves' disease. The hypoglycemia that occurs in patients with Graves' disease is caused by insulin antibodies that cause a condition of insulin autoimmune syndrome.

Hyperglycemia, a condition of elevated blood sugar can occur in patients with Graves' disease as part of a hyperglycemic hyper-osmolar state, similar to dehydration."

Read more: http://autoimmunedisease.suite101.com/article.cfm/atypical_graves__disease_symptoms#ixzz0DrZJbYT8&B


I took the nurses opinion on ANOTHER endocrinologist and called and made my appointment. Before the Doctor would agree to see me, I had to go to a nutrition education session with a registered dietitian and then the doctor would see me - sometime in July, his next opening.

So, I decided to pay for myself to see the registered dietitian. I told her my story, and the sweet young lady charted down what it was that I reacted to and didn't react to. She looked at me and asked how long I had been diabetic. I told her I wasn't diabetic. She was really confused. She looked through the list we had just made...and then she said it. "You're not hypoglycemic".

OK - I was really confused. 

She looked through my list more and saw that I was having blood glucose problems when I was eating things with no carbohydrates, like when I was when eating hamburger and cheese.. A diagnosis of hypoglycemia just didn't fit in her mind.

She got this odd look on her face, and said "You have Celiac Disease".

Great - another suggestion of a diagnosis. But I agreed to play her game. Celiac is a genetic form of gluten intolerance. I took her suggestions about the diet and agreed to go on it the next day. I would no longer eat anything with gluten, nor would I eat sugar/carbohydrates.

So, the moral of the story - finally...

It worked. I am one week completely symptom free. My blood glucose hasn't gone over 117, and it hasn't gone below 88. Not once...Never.

I eat nothing that has gluten. I eat nothing that has obvious carbs. I am on nearly pure protein. Chicken, pork loin, protein drinks, turkey, ultra lean ground beef (4% or less), buffalo, lean fishes...No sauces, no dressings, no anything that makes food go down smoother.

Then I decided to cheat. I had one bite of a cheese bread stick. No sauce, NO SUGAR. 90 minutes later, my blood sugar jumped to 222. But it never fell below 80.

So, now I'm confused. Am I actually diabetic? Do I have Celiac? Do I have Graves? Or is it just my dang gastric bypass?

What I do know is that I have lost another 9 lbs with no effort...Its amazing what happens when you get off carbs.

So, I have months until I get into the "right" doctor. I really want to keep up on this diet. My brain is coming back. I'm not foggy anymore. I feel energy. I actually had enough energy the other day to do my hair AND makeup in the same morning. I painted my house in one weekend...My kids are excited to have me back. I even bought a bike yesterday. I feel like I'm coming back to life.

What I do believe is that I have some form of an autoimmune disorder. Whether it is graves, celiacs, or some strange combination, everything is pointing to the fact that my immune systems is directly effected by the foods that I eat.

Bets anyone? Which one do you think it is? Graves, Celiac, or just the gastric bypass? Or throw in another diagnosis! I'm up for more confusion...:~)

I have been asked a lot lately..."Would you do it again?" With my blood sugars going crazy and my new addition to my lifestyle of what I am finding are seizures I have had to learn a new way to may my eating priority again. I can't put my children, my employees, my husband, or my body through these seizures because I choose to eat something "off" my diet.

I must say, at this point, an overwhelming "YES! I would do it again!" My husband would have me do it again. My children, well, I don't know what they would say. When I start to have a sugar drop my kids get freaked out - they don't want to see another seizure. That was more than hard on them.

But in the big picture...I know I would. I was practically disabled when I was at 300 lbs. I had blown out my lower back, couldn't wear anything other than open back shoes because my ankles were so huge. I couldn't cross my legs. I wore potato sacks for clothes because nothing else fit. I didn't feel like myself - I was hidden and saw no end in sight. I couldn't exercise - I was mainly on canes when I was walking, when I could walk.

But what would I have done differently before the surgery?

I wouldn't have lied to myself. I was eating too much. I was eating the wrong things. I was not educating myself as to what was eating me that caused me to be eating. Why was I hiding myself behind a world of fat? Why did I allow the process of eating create the serotonin in my brain to calm my aching heart?

I would have tried other options first. HCG diet maybe? getting a personal trainer and a counselor to help me with what I now KNOW was body dysmorphic disorder?

What would I change about the surgery process? I believe pre-operative evaluations should be a full year in length. This surgery is NOT a quick fix. Your body may get skinny, but your brain takes time to get there. There needs to be full pre-operative counseling and there needs to be PROOF that individuals requesting the surgery have the ability (mentally, financially, time expenditure, and emotionally) to "stick to" the "lifestyle".

Unlike many that are in this forum, I am years post operative. I DID NOT do my homework. I saw it as a quick fix. I DO NOT want to discourage anyone from having the surgery, but I can blatantly tell everyone in here that the nutrition class gave me a lot of "do's and don'ts" but not the "why's" so I could understand the consequences of nutritional choices. This needs to be openly discussed, questions need to be asked, and answers need to be real, not just sketchy informed consent.

For those of us that are years out know that we were more of the test rats and the problems will be ours first. I didn't really think of it that way. I will admit that one of the things that I did not recognize in my "fat desperation" was that years later I would become bold and prideful, thinking that I could "go back to normal" at some point just because I am now "skinny".

So, here is what I am going to do - I want to help educate. I will review literature...I will take feedback from others...but most importantly I WANT other peoples experiences to weigh against my own.

As for me and my surgery...I am now fighting for my health my life in a different way than I was before the surgery. It is no longer my weight but my quality and consistency of life that is imperative.

I am nearing my 9th anniversary. It is so hard to believe. I have managed to somewhat maintain my loss. I was 300 lbs to begin 9 years ago. It was only in the last year that I gained weight back. It was directly related to my blood sugars going crazy.

Here is my history...

Got my surgery - lost a total of 185 lbs within 6 months. Was gaunt and gross at 114 lbs, and decided I needed to gain some back. I actually had to work at it! It was so much fun...

By June of 2001 I had gained back 20 lbs. Was very comfortable at 135 lbs. but had started some really really bad habits. It was that month that, after eating a small piece of bread dough, I burst my seam and had an intestinal blockage. So, surgery number 2 happened as an emergency. The stupid ER surgeon even cut straight through my belly button. Can you believe it! You don't take a newly skinny womans belly button!

Healed up from that one and learned a few things...mainly that I had the willpower of a gnat.

It was that October that I started having hypoglycemia. Don't let people fool you - Dumping syndrome and hypoglycemia (at least for me) are two totally different episodes. DS, I want to stick my finger down my throat to get rid of the pain and anguish from whatever I shouldn't have eaten. I get the sweats, my stomach ACHES...No mistaking it. Hypoglycemia on the other hand, I get dizzy, slur my speech, get confused, and now Ive started the wonderful sugar drop siezures.

I didn't have many episodes of the hypoglycemia - just some when I would eat the very wrong things, such as milk and ice cream. Whereas with DS, I would have it every time I would implement a new food for months on end.

Time moved on and I got control of both of them. I would say by year four or five I was no longer throwing up and blatantly deserved the HYPO symptoms I would experience because I would cheat (don't forget the gnat comment from before).

But 2008 was different. Hypo started with the new year. Frequent passing out, frequent episodes of my husband forcing glucose down my throat. I would talk to my general practitioner about it, but he just said to "avoid sugar." Hmmmm....yeah, like thats easy. No one ever told me to check my levels. I wouldn't have known what that was.

Then it happened. October 2008 was when my body just broke. I went into what I believe now to be a ketotic seizure from having severely high glucose levels (I ate french fries with BBQ sauce, they were wonderful, but have never touched them again). Then after my own system decided to kick in the insulin, I went into severe hypoglycemic shock. I knew it, but I was stranded where no one could help me. I didn't get any food for nearly 7 hours. By then the damage had been done.

Since that day my sugars skyrocket and plunge with nearly everything I eat. So, I am back on the weightloss kick, but not because I want to...I am just blatently affraid of food. I've lost 20 lbs since October. I drink most of my meals (high protien drinks are about all I dont react to anymore). I measure my bood 15 times daily (and as a harpist that doesn't help my fingers at all). With any given meal I may shoot up to 350+ and within 2 - 3 hours Im down between 27 (my lowest I have recorded without an ER visit) and 35. The biggest problem is how fast I drop now. It can happen within 15 minutes with few to no symptoms until I am completely catatonic and can't tell people I need sugar. Thank heavens I have kids that are aware now, a husband with the eye of a coon dog for my sugar levels, and employees that keep stashes of glucose all over the office to help me fight my next episode.

I have lost my license. Im not upset about it - I know Im not safe to drive. I wouldn't want to drive with my kids, let alone around anyone elses kids and have that kind of an episode.

So - I am on the research kick now. Not finding much more than what has already been found on here, but it is pretty comforting to do the research and remind myself how serious it is for me.

My biggest problem is now my insurance refuses to pay for any of the "complications related to GB Surgery" so I am on my own and can't afford the medical support that I think I need.

Two days ago I had two siezures in one day. Im scared.

Two days drop free...But what that really means...two days no food. Dropped another pound since Thursday.