Replies to This Discussion

Permalink Reply by Don on February 6, 2012 at 3:46pm

I agree sugarboy, and some efforts are still being wasted on beta cell transplants which ignores the fundamental issue of the autoimmune attack. Who knows if Dr Faustman's idea will work but at least she is looking at the right aspect of the problem! Dr. Zhao's idea is kind of cool in that we barely need to understand the disease and so the cure could come about much, much faster than otherwise.

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Permalink Reply by acidrock23 on February 6, 2012 at 3:31pm

So how did the call go? Hopefully better than the U of I basketball team did yesterday...

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Permalink Reply by Gary on February 7, 2012 at 3:51am

I wouldn't say islet transplants are a waste. Even if stopping the immune attack ends up being effective it may only work well enough on some people to actually relieve them from insulin or it may relieve no one of insulin dependence. If they can at least stop to auto immunity problem and then get a transplant to recover the cells we could end up with a valid cure. The key word is "IF". This trial is pretty exciting just because it was actually done on long standing (not near as long as me) diabetics and ended up allowing them to cut their insulin down a decent amount with a single treatment and virtually no side effects. My biggest problem with diabetes by far is my sensitivity to elevated sugar. Not even high. I am not kidding when I say post 95 and it starts getting nasty. No one believes me but I've documented it enough to know. In general I feel horrible and its very disturbing because it affects my mental stability and I have severe mood swings. As far as the call, lets just say I'm working on it.

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Permalink Reply by Don on February 7, 2012 at 9:19am

I agree, Gary, even a small recovery of beta cell function would tremendously improve bg control and quality of life. I am excited by this study because so often successful studies with mice don't translate to humans. This re-education process has already shown promise in humans and seems (from my layman perspective) relatively simple and cost-effective, so maybe we should be ready to jump on a plane and get cured anywhere the laws allow!

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Permalink Reply by Gary on February 7, 2012 at 2:23pm

I proved it again today. Two hours post my meal at work I had the disturbing symptoms of high blood sugar. Minor cotton mount, Unable to focus, Irritability...etc and my sugar was only 110. I was doing a lot of physical work for a continued two hours. It was about 1 hour post that reading when I actually started feeling a little better. When I got home just a couple of minutes ago I tested and was 80. Though I don't feel perfect I feel much better then at 110. I have a serious problem with this that most diabetics will probably never experience. To feel like my blood sugar is very high when its only slightly elevated is a diabetics worst nightmare. Most diabetics don't feel well when they are a bit low but that's not a big deal because how often is one very low? In my case my sugar must never really get post 100 after a meal or I am just besides myself. Many on the board insist there is no way it could be BS problem but I've done this long enough to know it certainly is.
To be honest I am not convinced even having my own insulin production would fix my problem. It's real and its nasty. I'd love to sit down with a top Endo and discuss my what I believe is a very unique situation. Not only the sensitivity but the actual kind of symptoms I get both physically and mentally. Despite how others view my situation I believe its extremely unique.

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Permalink Reply by Don on February 7, 2012 at 3:17pm

I suppose you have already ruled these things out but could your symptoms be due to what you eat? Celiac disease or maybe allergies to certain foods? Or insulin allergy? I sometimes don't feel right while active bolus and meal digestion battle it out but what you describe is several notches above what I experience. Sometimes my heart beats too fast for a while.

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Permalink Reply by Gary on February 7, 2012 at 3:31pm

Well, there is some physical and mental disturbance. I eat much of the same stuff and can't correlate the problem to any specific foods. In fact I usually feel the best at night after my final bowl of cereal. Some of the symptoms I experience include buzziness, pressure in my hands,feet and head, body temperature feels off, hunger, nervousness, anxiety, very difficult to concentrate extreme irritability, Basically I feel like jumping out of my skin. The hypoglycemia can be bad also but that is much more mental then physical. I can get real meloncholy and paranoia sets it. To put it mildly I am a mess. Everyone is like you need to get yourself on a happy drug. I just have doubts whether a pill is really going to camouflage these symptoms. I really hate my F*****G life and I'm really scared at the same time. I feel unless this gets resolved I will eventually flip out.

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Permalink Reply by Don on February 7, 2012 at 4:30pm

Something sure isn't right. I guess the only real clue you have is that it generally happens post-meal? If so, then it seems it has to be diabetes and/or the specific foods? If you don't eat for a while and bg is level, do you still feel off sometimes? For me, my mental state so often follows my physical state. I sometimes experience unrelenting mental negativity when low and sometimes this is how I realize I am low!

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Permalink Reply by acidrock23 on February 7, 2012 at 4:39pm

Maybe if you ran your BG higher a few times, the 110 highs wouldn't bug you as much? I try to keep a tight leash on mine too but hypo-unawareness seems to go away if I run higher, like once/ insulin bottle when it's "faded" and doesn't quite "rock" as much? Perhaps there's some "software" involved in the sensation process that you could mess with. If it were unpleasant for a short time but made you feel better for a lengthier period, perhaps it would help?

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Permalink Reply by Gary on February 7, 2012 at 5:37pm

All I know is extremely disturbing and it's going to kill me one way or another. My only chance to get relief is going to sleep. If I am fortunate enough to fall asleep that is 8 hours less I have to deal with it.

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Permalink Reply by LaGuitariste on February 7, 2012 at 7:16pm

Gary, it sounds to me like a different endocrine disorder interacting with your diabetes -- perhaps thyroid issues or adrenal issues. Our other endocrine organs are just as subject to genetic flaws and issues as our pancreases are, and everything to do with our hormones impacts all the other hormones -- think of it as a symphony of hormones -- if one is out of "tune" then the entire symphony is impacted.

In my case, I have what I have not-so-fondly named "Bubble Syndrome" because I have "bubbles" (aka non-cancerous growths/lesions/nodules) in several endocrine glands: my thyroid glands, my adrenal glands and my ovaries. Everything isn't always directly about diabetes and the pancreas, unfortunately. I had a researcher tell me once that my susceptibility to melanoma was probably related to the same genetic flaw(s) that gave me my adrenal lesions/nodules, because the skin cells and the endocrine cells all come from the same original cell group in the developing embryo. So I either inherited a flaw that impacts those cells or else I had some kind of developmental accident during very early embryonic development that left those cells flawed or weak and susceptible to damage.

The adrenal thing is probably all wound up with the pancreas thing which is all nested in the thyroid thing which is intertwined with the ovary thing. I'm a mess, genetically speaking. I get your frustration and hopelessness -- try having reactive hypoglycemia, murderous PMS, crazy thyroid symptoms (heart palpitations, thinning hair, peeling thin nails, irritability, freezing cold when everyone's hot, hot when everyone's cold), chronic and recurring clinical depression, endless and unrelenting food cravings, full-blown panic attacks, etc. etc. etc. all through your twenties and thirties -- long before diabetes finally rears it's head -- and throw in a terrifying bout of malignant melanoma there for good measure. I'm not telling you this for sympathy, but because I want you to consider that your morbid focus on "diabetes = death" might be a SYMPTOM of larger endocrine system issues, not a rational conclusion. When our hormones are screwed up, it's really hard to think rationally, to make calm and dispassionate decisions, to winnow through what is fight-or-flight hormones (adrenaline) or stress hormones (cortisol) or sex hormones (testosterone/estrogen) "talking" and what is real.

May I suggest that you keep a careful journal for a few weeks, and write down everything related to your mood, your senses, your symptoms, your diabetes stuff (BG's, food intake, insulin, etc.), exercise, sleep -- and then meet with a competent endocrinologist to go over it and ask about any additional tests that might help you get a handle on what else is going on besides/beyond diabetes, because no one should feel so sick and disturbed just from a BG of 113 or 121 unless you're spiking and crashing, spiking and crashing and just cruising through 113 at high speed as you roller-coaster (which sounds unlikely.)

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Permalink Reply by Gary on February 8, 2012 at 4:35am

Jeanv,

Thanks for your perspective. I was seeing a counselor back around 1999 when I had insurance. He was a type 1 himself. Right around that time I got a new endo and learned that after 25 years of two shots of NPH and eating all kinds of stuff that I had no idea raised my blood sugar there was no way to control this sucker. I then learned how to count carbs and felt everything moving forward was going to improve greatly. I was a real bad mess just from not having a clue how to manage this disease. Initially it was a huge improvement but as time went on I realized I still don't feel well. I was testing 4 times a day which was a lot for me. I kept a record of my sugars I took for the endo and made notes to myself. In general anytime I test and it reads over 95 I don't feel well. It's crazy to think if I'm between 80 and 90 I feel well but pushing 95 and I start getting irritable with both physical and mental symptoms. I don't have actual panic attacks but my mind is racing and everything around me seems disturbing especially when I'm in my car. I guess its a form of anxiety but its coming from my system being off from the sugar levels I assume. I feel like my world is closing in. Yet if I have no disturbance from the sugars I just go off and do what I am out to do. Don't get me wrong its not that I never feel good but the levels have to be in that target range. I would love it to be another endocrine problem that would hopefully be treatable because this is just horrifying. I've been told it could be my thyroid but I asked how my thyroid was the last blood work and she said everything looks great. I see a nurse practitioner who specializes in diabetes but she is not an endo. I agree it seems crazy to actually being able to feel anything but perfect at numbers that are within 125 bs post meal but my mind and body says different. My father is also diabetic and he has virtually no symptoms of high BS. He said he can't even tell. Lows he feels but not highs. Something is definitely wrong here that is correlating to my glucose levels even if that is not the specific cause.

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