How can I help without sounding like a crackpot?

By russellstamets Latest Reply 2011-10-10 23:45:46 -0500
Started 2011-09-28 16:09:49 -0500

I’ve done something that’s not exactly in line with the diabetes establishment. I know it’s relevant right now as this epidemic gets fully ramped up. There’s no way I can be such a complete genetic outlier that my experience doesn’t apply to other diabetics. I think that as a LADA, standing at the crossroads of Type 1 and Type 2, my perspective is unique. They’re still guessing about LADA. They know it’s autoimmune, and they know there’s a multi-year year window until insulin is required. That window makes all the difference. In 2009, when I told my extremely evidence-based-medicine-driven physician (DO) that I would do anything to avoid the FSIS (F***ing Shot in the Stomach), he said, “Well, any endocrinologist would put you on insulin now, without a second thought. But there’s no evidence that your outcomes would be any better than waiting until after meds and lifestyle changes have become ineffective.” That was 2 and a half years ago (HbA1c=11.1). The next year and a half progressed exactly as he predicted. The metformin, glipizide and reasonable lifestyle changes initially dropped the HbA1c to 6.4, followed by a slow rise to 8.8 at the end of 2010. We doubled the metformin. The numbers came down, but not as far, and for not as long. By February of 2011, my fasting BS was headed up again. But I didn’t wait for that. As soon as we doubled the metformin, I took charge (I’m sure my wife would call it obsessed). I utterly rejected the FSIS as an acceptable option. If western medicine shrugged and saw only one path… I’d look east. And I’d look at lower grades of evidence. Hell, I’ve taken at least one supplement based on a mouse study. As long as my DO and nutritionist could see no harm.

So… it’s nearly October, 2011. My HbA1c has dropped to 5.5, and I quit the glipizide more than a month ago per the DO’s OK after my once a day morning fasting BS stabilized below 126 (the magic line on my graph). Fantastic story, huh? Even I, a fairly crusty skeptic, have allowed myself to get a little excited. Have I banished the FSIS forever? It’s pretty undeniable my pancreas is functioning at a substantial level. Have I reversed an irreversible autoimmune disease? It’ll take years to know for sure, but LADA is supposed to be a worsening progression, NOT dropping numbers with fewer meds. Exactly which, or what combination, of strict diet, excersise, supplements, acupuncture, meditation, stress reduction (only achievable via extensive mental re-build) has been/is the solution? We have no idea. None of my team (DO, acupuncturist/nutritionist) can write this up and submit it anywhere. Too many variables. I sure as hell wasn't going to double-blind test myself for each component (or combination) of this “treatment”. I wouldn’t have lived that long, even without diabetes. So you’re not going to hear about this from your doc, or read about it in JAMA. I’m not a usable data point.

I could just sail off toward my now happier and healthier, insulin-free horizon and leave the rest to fend for themselves. But it would seem such a waste not to share the the fruits of my self-experiment. Every body’s different, and would have to customize the recipe, but none of the ingredients are new, or costly. So I ask again, both longtime diabetes warriors and newly diagnosed alike, how can I lend my body of evidence to help without sounding like a snake oil salesman?

49 replies

annesmith 2011-10-10 23:45:46 -0500 Report

Well, I am ready to sign off for the night—-I HAVE A QUESTION ABOUT YOUR GETTING YOUR NUMBERS DOWN, I see where you did that great diet, but, I am kind of confused, like I said in my last e-mail——I'm about as confused as you are…if you are LADA, then how did you manage, even with a strict diet , to get the numbers from 11.1 to 5. something? And being that the older man I know is type 1 and so am I , we are not LADA, definitely not type 2, how in GODS NAME did him and I find a way to get our sugars down to not needing insulin for awhile—-THEN, in the meantime—-a lot of people don't believe us—-nothing is worse than not being believed…WHY US? HA, HA, HA,HA…seriously, how come you, me and this older guy could not just have regular type 2 or straight on mid to high range type 1——I mean, we ask questions everyday, all 3 of us have BENT OVER BACKWARDS and THEN some more, to stay off of insulin, or we only took it when we were dying ( as in my case)——GEEZ, I don't know right now whether to LAUGH, or THROW something—-it isn't fair…OKAY, so, now I sounded like a 5 year old…it just isn't fair. I could understand if we were getting some ANSWERS in general—-no offense to anyone on this site—you guys have ALL been great. It seems the 3 of us are caught inside some kind of continuous WEIRD zone, and it seems as though it never changes. It reminds me of one of those weird dreams a person can have at 3 in the morning, when you feel TRAPPED inside it, and you try to wake up but you can't. You try to move, but you can't…strange. I will NOT, simply will NOT start all the tests over again——-with the next doctor—-if he has a different opinion, THAT I can deal with, but, I will not start on over again, when I don't need to. I am better off with NO doctor at all, than to do that——sorry , but that's the way I feel. Back to my QUESTION: so, you have to deal with not KNOWING if and WHEN you will eventually need insulin permanently? I feel sorry for you there…I really do…HOW then, are you to know? I guess things could be worse—-but, not KNOWING, then being able to lower your numbers when they insisted you start on insulin when you were at 11.1——-did the doctor that day say there is little chance you could lower the 11.1? I think it's GREAT that you did, but, I'm just kind of confused about the 3 of us, even though the elderly man I know does not have a computer. I mean, we all 3 BEAT THE ODDS for type1, but I guess, not much more for me to ask, —-if you have time, write me back—-SORRY FOR THE LENGTH———HA, HA…anne

annesmith 2011-10-10 23:28:12 -0500 Report

Hi…thank you for your kind reply again…I AM STARTING TO GET KIND OF CONFUSED in general and also, I am just ASTOUNDED at the rare types you , myself, and the older man I know have. At the risk of sounding very bitter, or , I guess sounding kind of angry, I am wondering in my mind " WHY did you , myself and this other guy get the rare types, and we have to struggle CONSTANTLY, to figure out what in the HECK is going on, and then we have to deal with day after DAY, of people not believing us? I mean, good GOD. I realize all types of diabetes are a struggle everyday, but, YES, I have had days where I feel very IGNORED, and I feel people are calling me GEORGE when my name is ANNE…ha, ha, ha…I can laugh tonight, but, I kindly remind myself before I go to bed every night, to CONTINUE to pray to God that I can find another internist—-the last one found everything, then someone tried to get into my medical records—-YEP, IDENTITY THEFT—-I have not been HAPPY about that at all…as, being I am barely a type 1, have had insulin, whoever it was that tried to get into my record was some woman , and SERIOIUSLY this happened: She was NOT diabetic at ALL, and HER record went into MY RECORD—-so, here I went to try 2 new doctors , not knowing this, and they stare at me, saying " According to this record, you are NOT diabetic"——well, that would be nice, but it simply isn't true——-I got that straightened out, but I am just wondering, why ME? What's the deal in my life? Why do I have to be first off, INVADED by another person, who was attempting to STEAL my identity, then, TURNED AWAY after it was found without a doubt and recorded that I am a severe diabetic, because I am POOR—-I work 2 jobs, and can't afford health insurance…OKAY, I have said enough——I just PRIMARILY would like to ask God, and it's not his fault, but, WHY do I have to keep going ignored basically, told I am someone I am NOT, then on top of it all, a clinic LOST my medical records FOUR times, …GEEEZ…sorry to sound like a complainer—-I honestly normally am NOT a complainer——what the HECK?! THEN, I almost DIE in the emergency room in 2005 after my pancreas rejected the Metformin——-I guess I don't understand why I have to go through so much TROUBLE just to find another internist—-that's all.. I have looked and looked—-most of them are FILLED UP, then a whole bunch of them are in Des Moines, Iowa——that's a 2 hour drive from here. GOD will help me, I have no doubt, ——I just have to keep praying harder. It could be WORSE—SO, everybody , I hope you FORGIVE me for venting——I am just so TIRED of walking around without a regular doctor—-I won't even touch a general practitioner, because he will just REdiagnose me—-I don't need to be rediagnosed——my diagnoses was found without a doubt—-I started to sign on with a general practitioner about 4 months ago, but I asked questions first—-first thing I was told by the secretary was " He will start all the tests on over again for your diabetes, then he will decide"——no, no, no, and NO is my answer to that——-no way am I going to START OVER again—-not when I was already found to be diabetic without a doubt—-I am sick and tired of that —sorry to go on, but really, the sooner I find a new doc the better. It's just like I have been strongly CURSED all my life to NOT see a doctor——is there SOME KIND OF CURSE THAT SOMEONE PUT ON ME?!!!!——ha, ha, ha,ha…the curse is that I am a severe diabetic, but am not allowed a doctor PERIOD———-seriously, I am beginning to WONDER——it's been four years now with no doctor—-ANNE

MewElla 2011-10-06 13:58:30 -0500 Report

Hey, I think it's great you jumped into YOUR life and took charge…Good for you!

russellstamets 2011-10-06 14:19:30 -0500 Report

Your support is SO appreciated. Sometimes when you charge ahead, you're afraid to look back, in case no one else is in sight.

annesmith 2011-10-07 23:11:41 -0500 Report

HI again. I am replying to one of your e-mails from a few days ago. I am SO relieved that I found someone else that is in a weird zone.. For the last 6 years or more, I have felt like someone on Star Trek or something…ha, ha. All the free clinics wanted to do was GENERALIZED my diabetes WAY down…in fact, they are so so so general about it, that I have grown exasperated by them. They are beyond great for antibiotics, etc, but, other than that, I continue to look for and endo. I had one doc ——nice guy and all, but, he walked in one day not too long ago, only looked at my lowest A1c #s, and said " You are not even diabetic." Nothing could be farthest from the truth…I then said " But I was already diagnosed by one of the best internists in the state of Iowa. He said " I DON'T CARE——-you are NOT diabetic." I got mad. I said " LOOK, you can think what you want, but you are just way off base." I OFFERED to show him my diagnosis, which even STATED " Childhood brittle diabetes." He DELIBERATLEY turned his head the other way, and said " I DON'T CARE WHAT THAT SAYS…" I then said " Okay, then just give me my refill on my sleep med." I never ONCE asked the clinic doc to treat my diabetes, YET, he DELIBERATLEY tries to change my diagnosis…I will just ignore that, but, it was very hard to ignore at first…only reason I left the excelllent internist that found my diabetes back in 2005 was because I could not afford him…ANNE

Pynetree 2011-10-03 10:23:48 -0500 Report

…doesn't sound like you're a crackpot. Just sounds like you taking charge, not relying on one source, and being a bit holistic in your personal choice of treating. Thanks for sharing.

digitaldoorbell 2011-10-02 20:13:33 -0500 Report

One way not to sound like a "crackpot" is to try to elevate your language. You're an adult now. You followed this post with "how are your nuts?"
A teenage might find you amusing. I don't.
I do wish you good health though.

jayabee52 2011-10-02 21:08:22 -0500 Report

A lot of people thought that title cute and clever, including me! And I think it fit the subject quite well. I am far from being a teenager!

russellstamets 2011-10-02 20:30:12 -0500 Report

Sorry if I offended you. But if we can't lighten up a bit about all this, then we get stuck in a place that's not worth the struggle to live in it. I respect your opinion though.

thetraveler59 2011-10-02 19:02:57 -0500 Report

Thank God you are strong enough to take control of your life and say F__K to the AMA. I was once there my self 6 years ago where I got my fasting blood sugars to 70. Now out of control again I need some help! I was not clear as to what supplement you were taking to get the success you wrote in your post. Can you share that with me? Oh and by the way many, many (not all) doctors are nothing more than snake oil salesman for the drug companies is my belief!

russellstamets 2011-10-02 19:41:53 -0500 Report

Hey thetraveler59, look about 2 inches below this. raico asked the same thing and I wrote a pretty detailed reply at 12:08 today with all that I'm doing, including supplements. Check it out!

jayabee52 2011-10-02 21:14:33 -0500 Report

Unfortunately since we're all in different time zones, this website adjusts for time zone changes, and what you said you posted at 12:08 pm, my screen reads 11:08 AM. (pacific daylight time) So to reference replies using the time on the post, can be a bit tricky, especially if someone is not aware of the time zone shift.

kasd 2011-10-02 21:43:42 -0500 Report

anyone else that has some info. on what asked jayabee about feel free to contact me please.

kasd 2011-10-02 21:40:42 -0500 Report

jayabee, I would like to talk to you about some dieting ideas and motovation. I read your dicussion on this and would like to learn more, for I too am overwight, have neurpathy real bad in hands and feet.

jayabee52 2011-10-02 21:46:46 -0500 Report

I am certainly willing to "talk" if you want you can start a new discussion, go to a discussion where we're already talking about it, or you can inbox me here on DC and we can discuss it there. YOUR choice!

raico 2011-10-02 09:49:11 -0500 Report

I appreciate your post but I don't understand what you did to bring your #'s down, can you pls be more specific?
You mentioned the East, Supplements, etc.
Are you selling something?

russellstamets 2011-10-02 13:08:45 -0500 Report

You’re right raico, my few posts and replies so far only give a few specifics. I’m not selling anything. I’ve been skittish about the medical advice rules here, but I guess it’s clear this is all just what I’ve figured out for ME. It’s quite a laundry list. I don’t know exactly what’ working. It’s certainly some combination. I have some “science” that supports (for me) each of these things. I can’t put all that here. Probably on the blog eventually. It’s hard with full time job and the extra time some of this regimen takes. Everything is intended to either help with the autoimmune (type1), insulin receptivity (type2) or stress (huge driver for both). But here’s a quick rundown of what I’m doing/taking:

-quit all alcohol (my acupuncturist said stress on liver = stress on pancreas)
-quit almost all caffeine (one study suggested it and saturated fat spike BS)
-quit animal saturated fat (no dairy, fatty meats have to be grilled, i.e. no pot roast)
-other than those, eating the kind of lean, low carb diet you see posted here a lot. Slight differences than some, including limitless fruit and nuts, especially flavanoids like strawberrys and blueberrys, lots o cinnamon.
-eat constantly, every 3 hours or so, nothing after 7pm
-extremely strict adherence to all the above.
-15 minutes meditation daily (besides the stress relief, google Wim Hof - autoimmune)
-weekly acupuncture (stress, getting the pancreas “burner” going)
-perpetual motion (especially after meals, like 20 min walk after lunch, standing at work computer, stairs)
-supplements include: fish oil (autoimmune, inflammation), Alpha-Lipoic Acid (type2, BS control), B complex (stress, biotin source), Vitamin D (type1, autoimmune), NAC (type1, inflammation), GABA (type1, autoimmune, one mouse study showed both beta cell regeneration and reduced immune attack on them), Zinc (type2, amylin prevention)
-still taking metformin, quit the glipizide in August

CAUTIONS: It’s doubtful that any 2 individual’s lists will be the same. My doctor and nutritionist see no risks in this approach for ME. Don’t forget I’m LADA and have to work on both Type 1 and Type 2 aspects. Some things, like the fact that animal saturated fat spikes my blood sugar may be completely unique to my genetic makeup. Nobody else seems to have seen this. Don’t forget that I started skinny and that the activity increase and lean diet try to make me skinnier. I’m eating more fruit carbs along with my pounds of almonds to keep the weight on. Many of you Type 2’s probably wouldn’t mind the weight loss my regimen generates without those added carbs. But that’s mostly a quantity thing.

Please keep asking questions. This conversation will take time to tease all the details out. I believe the hardest parts are the mental changes. Giving up beer was hard, but truly being happy about it is harder. That’s why you hear me saying things like “if you play the victim, this won’t work”. Stress is probably my biggest driver. It would take books worth of explaining to get at all of just my issues. Everybody’s different. For me, a lot of the stress was because I’ve a talent for being a bit of an a**hole. Learning to instinctually become a kinder person is MUCH easier said than done.

Is that any help?

annesmith 2011-10-07 23:58:44 -0500 Report

Animal saturated fats spike my blood sugar WAY up———-this might help you. I am defined as type 1, but barely type 1. I am not LADA, though. My triglycerides were almost 500 2 months ago——-this all ties into the blood sugars, too. Amazing, because, when I was 18 and 19 years old, I ate MORE of that stuff, and my triglycerides then were PERFECT——-but, I was very diabetic from age 2 on…amazing how our genetics and habits line up——-I know that most doctors would tell me right now, " You simply ate too much fast food"——true, but, I also walked, ran, increased my running, and the count went up, not down. Ha, ha…I guess, what I am trying to say in a nutshell is, that I prefer to be more human, and eat what I want, along with the greens, salads, etc——I have cut back on my oil when I cook now, but, it's going to take some time for me to get that atrocious triglyceride count down——-my LDL is off, my HDL is off, but , 20 years ago, they were perfect , too———-animal saturated fats are BAD for anybody—-diabetic or not——SOME is good, but, I did some research on that, and they are finding more and more that we were all meant to eat GREENS first, NUTS, protein from fish and eggs, THEN desert—-ha, ha, ——-I will always TRY to eat more greens, but, to be honest, I love my Mcdonalds…nurses are pretty mad at me lately over that, but, OH, WELL——-they wouldn't have jobs if we all ate perfectly———-ha, ha——-ANNE

annesmith 2011-10-09 22:45:30 -0500 Report

It sounds like that diet works pretty good for you—-I commend you. I take it the "Paleo" diet is the one where you listed giving up all alcohol , no animal saturated fats, and lots of nuts and berries, along with eating several times throughout the day, with exercise. I tried that ——more of my own version, 6 years ago, and it did a LOT of good, that's for sure, HOWEVER, in my case, it did not work good after about 6 months . I felt weak, but, I know I was drinking too much water along with it. I was also overhashing my exercise—-I ate nothing after 7pm. I myself didn't find it to be realistic, but no offense at all to you…I think it is highly commendable what you do. Your A1c was at one time 11.1? If you HAD started insulin, the problem with that might have been it might have dropped you too fast too soon, but, I'm not a doctor, ha, ha. Maybe it would have been a good idea, I don't know. My own opinion is anybody with and A1c of 13 or over should not hesitate to get insulin. However, every body is different—-I must not forget this. I found out through my last internist that anything over an 8 for me is dangerous, because I am polydiabetic, so my system gets overworked believe it or not at 5.9 on up. I was surprised, as, at the time, I thought all diabetics were not overworked until they hit 10.0 or higher——very interesting . Maybe you could write a book with that diet—-it is a very very healthy diet. I have thought about writing my own book with a diet that I have basically been doing ( made up) on my own for the last 4 years—-only problem is it is highly similar to a popular South Beach diet or something like that——what I do ( over the last 4 years) is I eat a little bit of everything—-BUT, the big flaw is ha, ha—-my diet is full of plenty of cholesterol. If a doctor or nurse looked at it, they'd probably drop in some ways, but there are several aspects of it that work. My primary rule is : never miss exercise and do it at the same time everyday—-do not vary the time at all. This consists of running and walking with weights —-5lb weights for 20 minutes every other day. Don't walk and run EVERY day, because, this gives the body a chance to rebound from any possible lows. Then, eat Mcdonalds—-BUT, eat the cheesburger with a salad on the side, or at the very least, add extra onions, veggies with it—-SOUNDS LIKE A JOKE, I know, but, I will continue…Eat a LOT of green peppers towards the EVENING——and other vegetables—-stir fried or baked. When you bake food, add spice to it like garlic or olive oil. Breakfast and/or lunch must be the 2 biggest meals of the day—-with no eating after around 8pm. That way, body has protein and carbs when you go to bed at night, and ALWAYS walk and run TOWARDS the evening——it bumps the metabolism UP, and burns off excess sugar and salt. Coffee is GOOD, but no more than 2 cups a day, with limited creamer and some sugar, or black. That is what I have been doing for 4 years—-it works pretty good for me, BUT, I have had to cut BACK on my oils——-desert is allowed, but no more than once a day —-even skip that every so often. The big big downfall to this diet is that it is HIGH in protein and oils, but the big positive is it has a LOT of vegetables…I have a tendency to FORGET about pasta altogether—-so, I have added pasta ever so carefully, as, it drives my blood sugars up to TITHER really quick—into the 300s and 400s. SO, there you have it—-it is kind of humorous——I know—-ha, ha…ANNE

annesmith 2011-10-06 00:36:58 -0500 Report

Hi…I am SO glad I finally found somebody that is ALSO in a wierd zone. I had years of untreated childhood diabetes , then I was initially diagnosed as severe severe brittle type 2 at age 35. The internist tried me on Metformin, my pancreas rejected it, I fell WAY TOO LOW…then, landed in the emergency room with such a bad low, I passed out…then they had to give me glucose shots to raise it, and it SHOT STRAIGHT UP TO 701 immediately, I almost went into a COMA, THEN, they had to give me a shot or 2 of insulin to bring it DOWN, as , it would NOT come down at all. This bumped me down from 701 to 144. They said I responded beautifully to the insulin, but NO MORE METFORMIN. The internist changed his mind, and said I am type 1, he wrote me a prescription for insulin, but, I never got it filled, because, I was so poor at the time, I was scared to death to take the insulin on an empty belly—-I had very little in my refrigerator at that time—-for a long time. In the meantime, because I took the Metformin —-had been taking it for a whole year and a half before it almost killed me, it put my body into a LOW STATE——as if I were flying a plane TOO low for a LONG time——-I agree with my internist—-I'm type 1, because my highs are always in the 500s, 600s, and have even hit 700——-I am still trying to raise my A1C BACK UP——-I will NEVER ever EVER, go through the lows again—-sorry to sound rude. NEVER AGAIN————it was awful—-I am not classified as LADA——I had several diabetic seizures since age 2——-I am very very fortunate to be alive——-I am a LOWER END TYPE 1, but type 1 nevertheless. I would not wish lows on ANYBODY—-ha, ha. I knew an older guy that went type 1 untreated his entire childhood, too, and he had seizure after seizure from it——he and I BOTH saw ANGELS for YEARS when we were younger——OH, yes, …we are rare. I have 10% beta cell production——-most type 1s have 1-3%-5% ——anything below 20% is NOT GOOD—-it is type 1——I walk and run avidly, and have bent over BACKWARDS to stay off the shots———-HOW did I stay off, after having insulin in the E.R.?———EXTREME EXTREME extreme measures———-PURE greens and zero pasta and zero bread, exercising while low——BAD IDEA—-I don't do that anymore, no supper at all for a long time—-I now eat supper though, serious walks STRAIGHT up the highest hill I could find for a long time, and a LOT of water. That is how I did it, but, most of that was NOT GOOD——I do NOT suggest anyone try this . I now really live realistically——-however, my triglycerides are almost 500, my A1C has been an 8, 16 at one time, 6.3, 5,9—-my blood sugars have always been and still are like LIGHTNING——I am very very very very brittle, so my blood sugar might be 300 in one reading, 150 an hour later, and maybe 86 in ten minutes—it is literally like watching lightning during a big big big big storm…my blood sugars change so often, that nobody can keep up with them…when I do get enough to eat, as in 3 good square meals a day, my fasting ranges between 300 and 450..I hope this helps you———sounds to me like you are a little brittle possibly——that will cause a LOT of confusion at the doctors offices…ANNE

russellstamets 2011-10-06 13:06:56 -0500 Report

Oh Anne! Your story is so intense. How many flavors of this thing are there? “Brittle” Type 2. What a descriptive name. And I thought my LADA was sensitive to small inputs. You’ve got some amazing strength. I’m curious about the % of beta cell production you mention. Do you know which test provides that? I’d love to know what % I’m at. I’ve also been thinking about the “lightning” effect. I’m beginning to think the more frequent one tests, the wilder the swings. I’ve had to resist all temptation to do it more than the morning fasting. Otherwise, I’d obsess and stress and drive it up. How do you manage stress? Use any of the cost effective tools like meditation?
I can’t tell you how much your experience affects me. You’ve explored much further into the brittle unknown than anyone I’ve run across. Thank you for sharing.

annesmith 2011-10-06 23:15:13 -0500 Report

HI again…I forgot to tell you that, yes, brittle is bad, and there are MANY different flavors, ha, ha, ha. I was told by all doctors that brittle is still in the minority of most diabetics. Once I had it confirmed mine is like a continuous storm with lightning, I actually was able to relax. Why? Because, for a long long long time, I could not figure out for the life of me why I felt the way I did..ha, ha. It is humorous in a way…but , yes, very serious. My diabetes is actually defined as COMPLEX and brittle, so, for me to have insulin again, I must absolutely be as stabilized as POSSIBLE. Complex diabetes is extremely RARE—-it is almost more rare than type 1. Type 2 is the most common. Type 1 is very less common, but becoming more common—-used to be called juvenile only. Complex diabetes, like I said is very very very rare. What my body does basically is, it fights the storm all the time. I have one heck of a strong rebound , though, once I get what I really need. However, I was warned by an emergency room physician, that I cannot, absolutely cannot afford, to go with too little to eat anymore—those days are DONE. My body does NOT handle lows well at ALL…as in, if I do something really dumb and don't eat most of the day, then drink strong black coffee—not good—-I completely stopped doing this since I had KEYTONES reading at the E.R. again last fall——the doc said more diabetics die from LOWS than they do highs. IN ANSWER TO YOUR OTHER QUESTIONS: Meditation I DO do—-I HAVE to, because, otherwise, if I get STRESSED too much, I either go higher than the clouds into the 400s and 500s, or I drop DANGEROUSLY low, down to the 50s——not good. I am a cigarette smoker, and , I do not advice people to smoke to relax, BUT, in my case, the nicotine in the cigarettes actually stabilizes me probably half the time…but, I have cut back to under a pack a day. I do not take my blood sugar enough, as the strips cost me an arm and a leg—-I just average out a few days worth a week—not good, so I am going to find a way to be more sensible on taking it. YOU SAID that your sugars go too high when you take it more—-maybe if you take it 3 times a day, possibly 4, dependent, that might help. However, if you are tempted a lot, I am thinking that maybe if you write it down more, you might not be tempted to take it more than you might need. I was found to have something called POLY diabetes—-it is in DIRECT correlation to the brittle getting more severe over the years—-basically, I am defined as many-diabetic, ha, ha,ha…not that this is funny…sorry if I offended anyone, but, in a nutshell—-IT'S STORMY as heck——-in summary, COMPLEX STORM——-ha, ha—————-a complex of storms, not just one———THEORETICALLY, a person can't have more than one type I have been told over and over by most people, but, I KNEW A LADY that had FIVE different types of diabetes———NO JOKE HERE—-FIVE DIFFERENT TYPES——she had type 1 adult onset, type 2 brittle, gestational when she was pregnant, and alcohol caused diabetes—-the kind a person can get after drinking alcohol for years. I HAVE PROBABLY made some people mad ——I HOPE NOT—-I DO NOT want to confuse ANYBODY—but, I am telling the TRUTH—-the lady had FIVE different kinds——MOST people though, have ONE kind—type 1 or type 2——ARE YOU SCRATCHING YOUR HEAD ? YOU ARE PROBABLY GOING " OH, my GOD…"————SINCE I DON'T WANT TO CONFUSE THE PEOPLE ON THIS SITE, I will sign off for the night—-SORRY FOR THE LENGTH OF THIS LETTER——-HOPE THIS ALL HELPS——BY THE WAY, LADA, IS autoimmune—-HOWEVER, I am not as familiar with LADA—-I just know it is autoimmune———-my own opinion on LADA, which is what you have—-and ONLY A DOCTOR knows for sure, so take this as being JUST MY OPINION—last thing I want is a doctor on this site to be ANGRY at me, ha, ha…but, my own opinion is that, being that you are LADA, you are in a ZONE that is serious—BECAUSE, it's autoimmune——not only that, but, like myself, your body is fighting this all the TIME——-I'm not saying type 2 is not serious—-it is too——did not mean to offend anyone at all. But, I would be VERY careful if I were you on not taking any insulin AT ALL, because, you COULD, possibly eventually collapse , dependent…ANNE

annesmith 2011-10-06 22:48:08 -0500 Report

Thank you…yes, I am very strong…in answer to the beta cell % test, I honestly do not remember the name of it…they did it for me in the emergency room after my body literally would not sleep AT ALL for 3 and a half days—-I walked into the E.R. with very dark circles under my eyes, and boy, I was really feeling bad. At first, I thought it was general insomnia—-the first night. I went to work anyway after not sleeping 24 hours. Then, next night rolls around, and I was very confident I would sleep——no…it got even worse…what blows my mind is, I had very few symptoms of high blood sugar—-in fact, it did not even cross my mind. I went to work the 2nd day, and this time people were noticing I looked very very very tired. The 3rd night rolls around, and then I was kind of panicked. So, after that 3rd night with zero sleep ( I tried everything under the sun—-reading, even watching a little television, took an extra sleep med I always take)—-nothing worked. They ran the beta test—-I THINK if you just go in and simply request to your doctor " I need to have a test run to see what my beta cell production % is", they will definitely know the test name and do it for you. Mine was 10% function at best he said, but I averaged he said around 7-8%, HOWEVER, he said I showed without a doubt all the way down to 3-5%. So, overall, my beta cells produce insulin anywhere from 3% up to 10% on a good day. It's about like running on one tire——it's been this way for a long time so far as I know. What happens over time is, the body really gets tired , and at times, my pancreas simply freezes—-they caught that on X-RAY the night I hit 701. They took and X-RAY, showed it to me when I came conscious again , after they gave me insulin, and what it LITERALLY showed was : when I arrived in the E.R. my pancreas was WAY WAY WAY overworked, then, about 20 minutes later, it LITERALLY stopped working completely—-it just STOPPED——-then, I almost died——I saw ANGELS at some point , and I can remember LEAVING my body—-as in, OUT OF BODY EXPERIENCE. I knew a girl that had juvenile type 1 at age 3 on up, and she said her beta cell production was around 3%——however, she was one of the worst cases EVER in the state of Iowa…poor thing. My plan is to try to stay OFF of insulin , BECAUSE, I GAINED 8 LBS total in a few years, as I also was given more insulin in summer of 2009, with that 3 DAYS insomnia . He gave me SLOW ACTING insulin, and BOY, did I EVER FEEL BETTER after he gave it to me—-seriously, my vision cleared up, I had not felt that good for at LEAST 25 YEARS. I personally think I just need a LITTLE bit of insulin after I eat right now—-because, my average 2 hour readings are ATROCIOUS—-bad for the organs. My average 2 hours are 300-600, so yes, I am doing what I can to stay off insulin, but, realistically, I give it about 4 years, then I will be on it all the time. I felt my veins in my eyes literally POP yesterday, right before I went for my usual walk and run—-it scared me. I hope this all helps—-sincerely, ANNE

Jan8 2011-09-30 10:00:20 -0500 Report

I have LADA also and went on insulin after a 1year honeymoon phase. Never felt better in my life.but,now everyday is a struggle on insulin.My do told me tests showed the pancreas just wasn't working. I have to commend you for thinking outside the box and you do not sound llike a crackpot to me at all.

russellstamets 2011-10-01 00:52:38 -0500 Report

Jan, thanks for adding more clues to this unfinished puzzle. Were you on meds during the honeymoon phase? Did your A1c rise steadily? This thing is so unknown, maybe there are still choices for you. I keep thinking that solving the autoimmune riddle is the key.

kaf821 2011-09-29 11:31:23 -0500 Report


Thank you so much for posting your story. It fascinated me on so many levels! I had no idea LADA existed but, I’ll bet that’s what I had/have/had when I was first diagnosed two years ago at age 35. The DO I was seeing at the time (old school) diagnosed me as a Type 2 based upon findings of sugar in my urine and put me on metformin and told me to start eating better (which I thought I was). Next visit, sugar levels were still up so he added glipizide to the plan. The next thing you know, I dropped approx. 30 pounds in the upcoming months (and I was already thin) and started feeling really run down. I decided to get a new doctor as well as an endocrinologist and they both ran a bunch of tests on me and determined (in their opinion) that I was a Type I and gave me insulin and sent me on my way (and yes, I HATE the FSIS….. with a passion!) Not to mention, it’s making me gain a ton of weight (which some was needed but, extra was not). After reading your story, I wonder if I would have changed up my habits a little better back when I was first diagnosed and stayed on the medicine if I could have turned out like you! I did some reading on LADA right before this posting and I guess there are certain tests you can take to see if you have LADA. My question is, if it can be determined if you have LADA vs. a full on Type 1 Diabetes, can you have LADA forever and just control it by medicine and a healthy lifestyle or does it eventually lead to Type 1. Also, in your opinion, how do you go about finding a doctor who is more “alternative” or one who gives a more “eastern style type medicine/advice”.

Thanks again for your posting. Looking forward to your thoughts and opinions on mine.


russellstamets 2011-09-29 23:38:47 -0500 Report


So glad you replied. Work was a little too crazy today to send a thoughtful reply earlier. You’re one of the folks I was pretty sure must be out there and that my experience could provide hints to. Let’s first remember these sites have good reasons for having rules against anything that sounds like medical advice, so please know that nothing I share is intended as such. As for your questions: there are tests for LADA. The two most relevant appear to be GAD and IA. They both detect antibodies. I was positive for GAD but had a 0.0 on the IA. Here are 2 questions I asked my DO at this point along with his answers.
Q: How is it possible that it could be LADA or autoimmune-related when the IA (islet-antibody) test showed 0.0?
A: No test is 100%. GAD is positive in most LADA such as in your case. The other antibodies are not as specific in LADA but often in Type 1.
Q: How could it not be autoimmune related when the GAD indicated as much and I don't seem to fit Type II?
A: I believe you are LADA and, therefore, autoimmune. There was a study that looked at 5 criteria: 1) age <50 2) BMI <25 3) Acute symptoms ie. Weight loss, polyuria, poly dypsia 4) personal history of autoimmune disease 5) family history of autoimmune disease. The sensitivity was high if you had 2 or more of these and you have the first 3. Then by having the positive GAD pretty much confirms this.
I think as far as the science goes with LADA, this was a sound analysis he provided. The answer to your next question is the one I’m hoping I can prove my DO and the accepted evidence wrong about. They say LADA leads to insulin. Period. Anywhere from 2 to 12 years before you can’t control your BS any other way. Originally, my hope was that however long I could delay it might see the development some magically perfect pump, or viable islet transplant, or… another pill? It’s only in the last 100 days, when the predicted, “inevitable” upswing in my carefully tracked morning fasting numbers flattened, and then dipped, and stayed below 126, that I began to let myself contemplate some kind of reversal. My understanding is that the best I could’ve hoped for was a flattening of the trend, not a drop close to normal. But I won’t know for sure for years.
As to finding a physician? Wow. Good question. Don’t know. Young, evidence-based, DO? These are traits of the one I was lucky to stumble across. These days, any physician who wouldn’t let you query them about such things before hiring, might indicate a red flag. I think the team approach between my DO and acupuncturist/nutritionist was balanced. Careful though, quackery abounds on the eastern front. My acupuncturist gave me the name of a national organization my daughter (away at college) could use to find one, but I can’t find the note.

As usual, I was kind of wordy again. I hope any of this helps.


annesmith 2011-10-06 23:29:06 -0500 Report

If this helps any—-and , YEAH, I am still confused on these tests, too—-but, I specifically remember I tested positive for the GAD—-whatever GAD means, they said I tested positive for antibodies, whatever that means, too—and, I already told you my pancreatic is 7-8% average beta cell production—I said 10%, but, I forgot he said that is when I'm having a good day, not average. I hope you can get more answers—and by the way, you are NOT a crackpot——not at all. My biggest struggle is people not believing me half the time——-they say things like " seen your psychiatrist lately? There is no such thing as complex diabetes." I just get really quiet then, and change the subject. I already had the tests found, so, I guess I don't know what else to tell that 50% of people that never believe me…they can't help it probably—-it is very very very very frustrating, though, because, at work , we cannot talk about our health at all…and, so, I'm standing there talking to a customer or a co-worker ( this is on a HUMOROUS NOTE, but it's true), and, my blood sugars are changing constantly, so, they pause, look at me and ha, ha,…they are PERPLEXED———-I try to keep a good sense of humor—-GOT to, because life is too short——-ha, ha, ha, ha…ANNE

russellstamets 2011-10-06 23:53:43 -0500 Report

What you report is mind-blowing. I believe you because I think what they don't know about diabetes is more then what they think they know. Thank God you've got your sense of humor with the roller coaster you ride. You've given me plenty to think about.

annesmith 2011-10-07 23:44:39 -0500 Report

Yes…I was having trouble typing my last e-mail, and I fixed this computer so it will type good now. Like I said, I felt like someone off of Star Trek for the last 6 years, because I am in such weird zones. I would have to have one heck of an amazing strong body, though, as no matter which zone I am in, once I get what my body needs——-which is complex, but once I get in me what I need during a blood sugar attack—-whether it be high or low, I rebound beautifully. Thank GOD…because, for those out there that do not rebound strong like myself, I feel really sorry for them. One thing I am noting is that each of our bodies are different. What works for one diabetic may not work for another…a lot is dependent on what we last ate, how much exercise we got in for the day ( or lack of), and our stress levels. I had an extremely stressful moment one day about 5 years ago, and my speech became slurred after I had argued with someone, and I honestly thought I was in a severe LOW then. I left the room, went and took my blood sugar, and it was 500 something. Good thing I took it, as , I was ready to go and eat protein and orange juice to bring up what honestly felt like a low. Usually though, I can tell if I am high or low. I never go low at all if I get 3 good square meals a day…One thing I never do anymore is go for my walk and run when I have not had enough to eat…I can't believe how many days I did that…that is downright dumb. I found out the hard way…what it did is it burned off any sugar I had left in me, then , like someone driving a stake into the ground, it lowered my resistance to other things like colds, flu, etc…it's not good. It's like taking a hammer and pounding it harder and harder until there is nothing left——-so , once I quit that bad habit, my energy level has soared…I rarely go low anymore since…rarely. My big thing I am focusing in on now though, is my highs and the brittleness———it is not good for the kidneys, and so, I am working on leveling off as much as I can the unpredictable numbers——103 , then 10 minutes later 290, then , 8 hours later 500——it did not dawn on me until recently that that is just really really really hard on the kidneys and the heart——so, if I continue to work on LEVELING those to more consistent numbers, I will reduce my chances of chronic kidney disease in HALF. Good thing I am 41years old and not 81——-or I'd be kind of panicked…ha, ha…When I sleep every night, I go into some pretty big extremes—-either it goes up into the 300s, maybe 200s, or , if I have a virus, and my body grows exhausted from a fever, I will suddenly nosedive DOWN LOW——pretty low, into the 80s and 60s——-HERE IS SOMETHING I CANNOT FIGURE OUT—-MAYBE SOMEBODY CAN HELP ME : How come when I go down LOW for around 4 hours when I am sleeping, I sleep so DEEPLY AND SOUNDLY? I thought too low was bad for you, yet, I feel SO good and sleep SO darned good when I dip down into the 60s . That is a MYSTERY to me————-ANYONE KNOW , or have any idea why? ———ANNE

annesmith 2011-10-07 22:43:17 -0500 Report

Thank you…I often forget I am on a roller coaster ride everyday. I have a strong tendency , unless I am writing someone about it, to forget believe it or not. I do not know exactly why I forget…I guess mainly because I have gotten used to it over the years. This is a positive in a way, because, then less stress from thinking about it less is better all around. However, I have to remind myself that to forget about it is not the answer(s). For example, today and yesterday I got back on the wagon of actually taking my blood sugar. I often went days, even weeks , without taking it. Then, I'd just wait until my a1c reading came back. ANNE

annesmith 2011-10-06 00:51:34 -0500 Report

HI…this is Anne again—-I am not going to break any rules on this site, so , to everybody reading both my letters, this is what my experience and knowledge is: if the fasting was brought down below 126 for a long time, then you are probably LADA——-BUT, I am just wondering here———specifically HOW did you get it down that low, because, if you did extreme things, like zero meat, zero carbs, or very few carbs, then you could be worse than LADA———-just a thought——I bet you might be mad at me now for thinking that, since you hate insulin shots——I am scared of them myself—-don't care for them ——however, with my experience, as I told you in my first letter, I got tired…just dogged TIRED , of going to the extreme extremes to stay off of insulin—in fact, I am still trying to raise my A1C over a 6——I feel terrible at anything below a 7—-just awful for the most part——I am very proud of trying so hard to stay off the shots, but, good GOD, I took it too far for too long. I am wondering if you are similar on this——maybe it's time just to eat 3 meals a day, moderation is the key——that's what I strive for, and if you eventually need insulin———just take the insulin —-just a thought——it MIGHT be healthier for you to try this—-and keep on exercising—-I still, and always will , run and walk regularly——-I feel so much better since I just let myself be more human, ha, ha,ha…just a thought——-ANNE

MrsCDogg 2011-09-29 04:51:28 -0500 Report

I just have one question. What is LADA?

russellstamets 2011-09-29 08:13:01 -0500 Report

It's sometime referred to as Type 1.5, but Latent Autoimmune Diabetes in Adults (LADA) is how you'll find it in the medical literature. It's like the juvenile version of Type 1 except that it hits later, after age 35. For me it was age 49, although I might have had it for a while previously. The other difference from the more common Type 1 is that it can take years (2-12) between when you're diagnosed and when insulin is required. There are estimates that as many as 20% of Type 2's might be mis-diagnosed LADA's. At first, LADA responds to medications like metformin, and to lifestyle changes, like diet and exercise. But the steady attack by the body's own immune system on the insulin producing beta cells in the pancreas is said to be irreversible, leading to insulin for life. LADA is thought to be primarily genetic, but triggered by crappy lifestyle and stress.
I know I'm wordy, but does that help?

dIDYMUS 2011-10-01 16:39:09 -0500 Report

A lot. I had no idea what LADA was. Is this included in the tests the Dr. does? Everytime I think I doing good, there is another "complication" possible.Do you have to ask for GAD and H1? Do insurance restrictions apply. I don't think all of this is a viable solution for us who have minimal ins. coverage, with not a lot of cash. But I appreciate the knowledge you bring, and the hope that someday it could happen for all of us.

dIDYMUS 2011-10-02 17:48:53 -0500 Report

I will asked the Dr. and find out if there is a text or symptons etc. I am thinking about changing to a Gastro Dr. that can monitor all this. He is also an internist that I feel can manage other problems. Thanks for your input, and I will seriously thing about this. Opps!! No I won't, I am going to call him on Monday.

russellstamets 2011-10-02 17:56:44 -0500 Report

Very Cool. According to the people I talk to, you've already done more than most manage to, by taking charge of your care!

russellstamets 2011-10-01 21:25:00 -0500 Report

I had to ask for the GAD and the IA. I had spotted an article on a health news feed I get. I know one of them had to be sent to Mayo, so they cost. I'm lucky that my particular high-deductible plan covered it. But to tell you the truth, I'm not sure anything's conclusive enough. It seems like the docs are still going with their gut a lot. Just ask questions. If 20% of Type 2's are mis-diagnosed LADA's then maybe one should save the money from the tests and take some time to put it instead into some high quality food (organic, etc) and focus on living in a righteously chill manner, and bring those numbers down. Eating lean and fairly unprocessed doesn't cost me that much more. It probably evens out considering the savings from no fast or junk food. A half gallon of ice cream buys a lot of almonds! The supplements I take probably run about $100 a month, pretty steep. Still, I'm pretty sure I'm saving that from no beer. I'm shelling out 60 a week for the acupuncture. That's a budget hit. And I know even small extra amounts are as good as a million in this economy for some. Just do what you can. And don't hesitate to ask me anything I can tell you from my experiment.


Doc Murphy
Doc Murphy 2011-09-29 09:24:21 -0500 Report

I don't think you're a crackpot at all. It sounds like your approach to wellness is a "holistic" one; you are taking care of the whole body which leads to better general health and those numbers just have to budge in a positive direction. Congratulations…you are inspirational!

russellstamets 2011-09-29 10:50:32 -0500 Report

Thanks much! I guess what I'm doing is holistic. Didn't plan it that way. It's just that as I sifted through the mountains of studies, some of the things the "health nuts" have been saying all along appeared to be worth trying. And I'll be darned if they weren't right about much of it!

jayabee52 2011-09-28 18:03:46 -0500 Report

Well Russell, I think you did a pretty good job of it with this discussion.

I am a t 2 who has been on Metformin, and insulin and now manages my condition through my low carb high protein meal plan.

I just wish I had gotten to this place in my life with diabetes before I had gotten some of the complications I now have. But no sense crying over "spilled milk" I am where I am.

Blessings to you and yours


russellstamets 2011-09-28 21:26:14 -0500 Report

Thanks James. I'm considering a phase out of the metformin as well, but may wait and consolidate by gains for a while. Fall also tends to be more stressful for me. And going public's outside my zone, at least my old one. Thanks for the followup.


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