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Medical Forum / Diseases and Disorders / Diabetes / March 2006Paging Susan...
Susan, if you don't mind could you give me the blow-by-blow of your recovery from your RH symptoms when you were first diagnosed? The reason I ask is that I'm 6 weeks and 25 lbs from my discovery and I'm STILL having shaking problems, and now I get them as a reaction to things that shouldn't bother me at all (like a spinach and cheese omelet this AM! made with no milk). I was up shaking at 3 AM again this morning and after a spoonful of almond butter fell back asleep, only to wake up every half hour after that from 3:30 to 6 AM with more shaking. If you don't mind I'd like to know how long it took you to stop feeling that way and what kind of numbers and physiological symptoms you had along the way, if you remember the gory detalis. Also, did they put you on Metformin? I'm not on anything right now, am wondering if I should go back to the GP and have a snit in his office until he gives me it. Thanks LQ, in a world of hurt right now > Susan, if you don't mind could you give me the blow-by-blow of your > recovery from your RH symptoms when you were first diagnosed? I can't recall that clearly, it's been years. At first, I tried the Zone diet, still believing that lower fat was healthier, and I preferred that type of food. I lost a lot of water bloat right away, but every time I ate, still got shaky, clammy and foggy shortly afterward. By this point, I'd become so IR from my time on the Ornish diet that I was maintaining my weight on 800 scrupulously documented calories per day, too. :-/ I believe I gradually reduced carbs and increased fat and protein, based upon the reports of other women on the PCOS forum, over the next weeks or few months. Getting to Atkins induction levels screwed with my thyroid badly, my T3 went too low and I got awful depression, gained weight but my RH was gone pretty quickly at that level, never to return. I raised carbs to more like 50 net per day, and have stayed between that and 100 (rarely) pretty much in the years since. I think it was a couple or few months before I had it under control, and after a while, even an occasional white flour excursion didn't make me foggy, dizzy, sleepy or shaky (white flour, potatoes or any food starch were my worst triggers). > The reason I ask is that I'm 6 weeks and 25 lbs from my discovery and > I'm STILL having shaking problems, and now I get them as a reaction to > things that shouldn't bother me at all (like a spinach and cheese > omelet this AM! made with no milk). What is your sugar doing at times like this? I wonder if you're still having a hyperinsulinemic reaction or if your reactions are related to something else? I know you don't want a DM diagnosis at this point, but I think you really do need an evaluation by an endocrinologist ASAP. Meanwhile, Ozgirl may have more recall of her own RH experience for you. > I was up shaking at 3 AM again this morning and after a spoonful of > almond butter fell back asleep, only to wake up every half hour after > that from 3:30 to 6 AM with more shaking. I'm sorry you're having this experience so intensely even now; have you tried testing your bg during these nocturnal awakenings? > If you don't mind I'd like to know how long it took you to stop feeling > that way and what kind of numbers and physiological symptoms you had > along the way, if you remember the gory detalis. My symptoms were a lot like yours; I had the distinct feeling of moisture on my forehead and a clammy, sweaty feeling all over, disorientation, shakes, irritability, etc. It was a gradual process with diet modifications along the way, but resolution of RH was pretty quick when I went much lower carb. > Also, did they put you on Metformin? I'm not on anything right now, am > wondering if I should go back to the GP and have a snit in his office > until he gives me it. I asked for and got metformin a while later, because I wanted to reduce IR and couldn't lose the induction weight I'd picked up. Until this past year, I had a severe fatigue problem with it and couldn't stay on it. I'm on 1500 mg per day now, to reduce IR. If you get metformin, you're going to have the dx you don't want on record. If you're now willing to chance that, I'd recommend having a good endocrinological evaluation before going on meds. HTH, Susan Thanks, Susan, I appreciate it. > What is your sugar doing at times like this? I > wonder if you're still having a hyperinsulinemic > reaction or if your reactions are related to > something else? It may still be the hyperinsulinemia, and my hunch is that I'm getting swings from: - eating - from the liver dumps I get when I don't eat, and - from the liver dumps getting turned off by my eating, but before the food gets absorbed. For example: In the middle of the night, if I wake up to pee, with no shakes, my bg is in the 80s oftentimes. Has been as low as 77. If I wake up with the shakes it's mid to high 90s. I figure that at some point I went low enough that the brain and liver freaked out and I got a liver dump. I have these during the day sometimes if I don't eat - bg will be perfect (85-90s), then I start feeling weird and shaky and find that it went up 10 or 20 pts. Then if I'm shaky and eat the bg goes DOWN for about a half hour, then goes back up as the food gets absorbed. I think the initial drop is from when my first phase insulin tells the liver to shut up and stop dumping glucose. At least I have some of that phase left ::sigh::. I was at 98 the other day, shaky, ate a half a wasa cracker with peanut butter, and dropped to 78 10 minutes later. At a half hour was back up to 96 or so. I was running out of strips so didn't take all the numbers during the almond butter incident of this AM, but was 99 when I finally got up for good, shaky as hell. Then I exercised and barely made it through, had to stop and have a half wasa cracker with peanut butter and go back to it. Then ate the omelet and got shaky immediately afterwards, tested at half hour and I was 87. Then tested at 1 hour and I was 101. I don't think it's meter error as the meter has been pretty consistent with how it reads vs. how I feel. Plus when they pulled blood at my first doc I stuck myself at the same time and the meter was only high by 2. None of the numbers are bad, but I can feel the movement, as you know. And I'm very sensitive to epinephrine, which is whats tripping the dumps off. I did have a 141 yesterday AM 1 hour after an omelette and a bunch of vitamin pills, but it may have been an anomalous reading or something on my hands. I went to the bathroom and washed my hands and took another reading and it was 99. For most people that would be enough to write it off as an anomaly but I've proven that my bg can actually move that fast so I'll never know. I'm wondering if I'm just not eating enough. so every few hours the liver goes "whoa, time for more sugar". But while I've cut cals substantially they aren't ridiculously low. I'd probably have some beautiful low numbers if I could get the liver to shut the hell up. Re: the metformin. Can't they give it to me for IR, not just DM? A diagnosis of IR would be a lot less damaging to the insurance situation than a DM would be, and I'd still get the stuff. There's always Canada - I'm a half hour from the border....;) LQ > For example: > In the middle of the night, if I wake up to pee, with no shakes, my bg [quoted text clipped - 5 lines] > perfect (85-90s), then I start feeling weird and shaky and find that it > went up 10 or 20 pts. You might try variations on bedtime snacks (try protein, frex) and on middle of the night ones. > Then if I'm shaky and eat the bg goes DOWN for about a half hour, then > goes back up as the food gets absorbed. I think the initial drop is > from when my first phase insulin tells the liver to shut up and stop > dumping glucose. At least I have some of that phase left ::sigh::. I'd say that you have a very robust first phase response; it's taking time to turn it off. > I was at 98 the other day, shaky, ate a half a wasa cracker with peanut > butter, and dropped to 78 10 minutes later. At a half hour was back up [quoted text clipped - 9 lines] > was 87. > Then tested at 1 hour and I was 101. I'm only speculating here, but it may be that while you're still having a hyperinsulinemic first phase response, you're also improving your insulin sensitivity with the modifications. The trick is to get your overachieving pancreas to slow down to match your improving IR, if that's the case. > I don't think it's meter error as the meter has been pretty consistent > with how it reads vs. how I feel. Plus when they pulled blood at my > first doc I stuck myself at the same time and the meter was only high > by 2. Good. > None of the numbers are bad, but I can feel the movement, as you know. > And I'm very sensitive to epinephrine, which is whats tripping the [quoted text clipped - 4 lines] > on my hands. I went to the bathroom and washed my hands and took > another reading and it was 99. It was very likely something on your hands. > For most people that would be enough to write it off as an anomaly but > I've proven that my bg can actually move that fast so I'll never know. > > I'm wondering if I'm just not eating enough. so every few hours the > liver goes "whoa, time for more sugar". But while I've cut cals > substantially they aren't ridiculously low. How low are they? I should mention that the resolution of my RH came with eating 3 moderate sized meals and two snacks daily, never going more than 3 hours without food, except for sleep. I ate a small bedtime snack, too. If I were you, I'd try a mostly protein bedtime snack. > I'd probably have some beautiful low numbers if I could get the liver > to shut the hell up. I don't think your liver is pumping out tons of glucose, you're in decent numbers at night. I think the problem is more pancreatic overachievement, maybe. I really think an endo is in order ASAP. > Re: the metformin. Can't they give it to me for IR, not just DM? A > diagnosis of IR would be a lot less damaging to the insurance situation > than a DM would be, and I'd still get the stuff. Yes, they can give it to you for whatever they want. > There's always Canada - I'm a half hour from the border....;) I understand your eagerness, but I think your insulin sensitivity is improving and you have plenty of insulin. Screwing with self medication isn't your best option here, getting a med evaluation by an endo is, IMO. Susan "Pancreatic overachievement" :lol:, I like that phrase. If that's the case it would be truly good news. I completely agree on the endo thing - but they won't take me without a diagnosis and referral from my GP and he doesn't think it's warranted. :P . It's like the fact I feel like crap counts for nothing, as long as the lab results are fine. I'm going to have to call him and whine until he listens to me. > How low are they? I should mention that the resolution of my RH came > with eating 3 moderate sized meals and two snacks daily, never going > more than 3 hours without food, except for sleep. I ate a small bedtime > snack, too. About 1200- 1500 cals. The meals are about 300-400 cals, the snacks 150 - 200. I've been doing 3 meals/2 snacks too. I've been trying to keep them all on the smallish side so as not to accidentally generate a spike that would crash afterwards and leave me feeling horrid. It's a shitty fine line to walk. But maybe at my height, weight, and activity level 1200-1500 isn't quite enough - I'm 5'10, 235, and doing 40-60 minutes of cardio a day. I just came back in from marching the hill I work on (about a mile long to the bottom and back). >If I were you, I'd try a mostly protein bedtime snack. I have, but got the shakes (later though - 5 AM not 3 AM)- maybe the amount wasn't enough. I think I'm a fast metabolizer - food just cranks through me. On nights I eat dinner later I haven't needed a snack and the night was better, eating earlier I need one and the night is usually bad. Come to think of it, one really good night I had was when I had a late dinner of a rather inordinate amount of sea scallops. I slept great and woke up with a bg of 77. Maybe I'll up the amount. Mornings are BY FAR the worst. It feels like my bg and shaking issues don't get sorted out until about 10:30 AM and then is better for the rest of the day, but by then I'm exhausted and completely screwed up. I was wondering if it would get worse before it got better, that's why I was curious about your story. Thanks for all the help, it helps to have someone who understands this, LQ > "Pancreatic overachievement" :lol:, I like that phrase. If that's the > case it would be truly good news. :-) You clearly have phase 1 working. > I completely agree on the endo thing - but they won't take me without a > diagnosis and referral from my GP and he doesn't think it's warranted. > :P . > It's like the fact I feel like crap counts for nothing, as long as the > lab results are fine. I'm going to have to call him and whine until he > listens to me. He doesn't have to dx you as DM or IR, just IGT and RH, or IGT alone. > About 1200- 1500 cals. The meals are about 300-400 cals, the snacks 150 > - 200. I've been doing 3 meals/2 snacks too. I've been trying to keep > them all on the smallish side so as not to accidentally generate a > spike that would crash afterwards and leave me feeling horrid. It's a > shitty fine line to walk. IIRC, when I did the Zone, the snacks were supposed to be 100 cal. You could try that. > But maybe at my height, weight, and activity level 1200-1500 isn't > quite enough - I'm 5'10, 235, and doing 40-60 minutes of cardio a day. > I just came back in from marching the hill I work on (about a mile long > to the bottom and back). If your weight loss continues at a rapid pace, you could dial up calories a bit. > I have, but got the shakes (later though - 5 AM not 3 AM)- maybe the > amount wasn't enough. I think I'm a fast metabolizer - food just cranks > through me. Two hours later was a tip off that protein is what you should have. It was too soon to expect things to just go away the first time you try something. The endocrine feedback loop is a 3 month deal. > On nights I eat dinner later I haven't needed a snack and the night was > better, eating earlier I need one and the night is usually bad. > Come to think of it, one really good night I had was when I had a late > dinner of a rather inordinate amount of sea scallops. I slept great and > woke up with a bg of 77. > Maybe I'll up the amount. I wouldn't eat huge meals; high calories trigger high insulin response. I'd have protein at bedtime, though. > Mornings are BY FAR the worst. It feels like my bg and shaking issues > don't get sorted out until about 10:30 AM and then is better for the > rest of the day, but by then I'm exhausted and completely screwed up. See if that improves after consistently having protein before bed. > I was wondering if it would get worse before it got better, that's why > I was curious about your story. > > Thanks for all the help, it helps to have someone who understands this, > LQ Sure. Just don't expect fixes to be immediate. Susan Tried a chunk of chicken before bed last night - it lasted until 4 AM then I woke up with ferocious shakes and I was at 103. Maybe I'll try it with some extra fat to slow it down next time. And this AM I was at 116 1 hour after a scrambled egg with canadian bacon and a cup of steamed green beans. This is a worse number than I was getting back when I first started this on the same meal. There's hardly any carbs in that, maybe 9 g total. Things are getting worse, overall, and I don't understand why. I know that stress plays a role - could it be that the diet and exercise is stressing my body enough that it's raising my numbers even though I'm losing weight? Plus I'm not sleeping well because of the shakes, that's adding to the cortisol level as well. I'm reacting shakily and with inordinate numbers to amounts of carbs as small as just a few almonds - I don't understand what's going on, I feel like I'm watching my pancreas die in front of me.. Off to beg for an endo consult, LQ > Tried a chunk of chicken before bed last night - it lasted until 4 AM > then I woke up with ferocious shakes and I was at 103. Maybe I'll try > it with some extra fat to slow it down next time. Fat could help; how big a chunk was it? > And this AM I was at 116 1 hour after a scrambled egg with canadian > bacon and a cup of steamed green beans. This is a worse number than I > was getting back when I first started this on the same meal. > There's hardly any carbs in that, maybe 9 g total. > Things are getting worse, overall, and I don't understand why. I think things are in a sawtooth pattern for you, not necessarily all worse; for instance, 4 a.m. is better than 3 a.m., the 5 a.m. after scallops was better than 4 a.m.... But I understand your frustration. > I know that stress plays a role - could it be that the diet and > exercise is stressing my body enough that it's raising my numbers even > though I'm losing weight? > Plus I'm not sleeping well because of the shakes, that's adding to the > cortisol level as well. I'm just now recalling that I felt horribly jittery and sleepless for three weeks during the time that I dropped my carbs very low, during my Atkins induction trial, then it got better, but I felt like jumping out of my skin til then. If you're as bad off, or worse, than I was, it may take you longer than the 1 week most new low carbers take to adjust. And again, it takes 3 mos. for your entire endocrine system to make the adjustments. You're going to have to take a leap of faith here and try to stop measuring your success by 24 hour changes. Every new thing you try may help, but you won't know that in one day. > I'm reacting shakily and with inordinate numbers to amounts of carbs as > small as just a few almonds - I don't understand what's going on, I > feel like I'm watching my pancreas die in front of me.. It may not be the carbs; are you salicylate sensitive? Have a food sensitivity otherwise? Your pancreas isn't dying, it's overachieving. ;-) And if you keep thinking in such catastrophic terms, stress hormones will continue to muck up the whole process. Do some meditation, deep breathing, biofeedback, cognitive behavioral therapy, whatever it takes to stop these negative and unrealistic thoughts from affecting you. This may be the most important step you can add right now. > Off to beg for an endo consult, > LQ Good luck! Susan > Fat could help; how big a chunk was it? About 2 oz, I'd estimate - 1 end of about a 6 oz breast. > It may not be the carbs; are you salicylate sensitive? Have a food sensitivity otherwise? I had a naturopath tell me that I'm wheat and dairy sensitive, but they tell that to everyone and I haven't had problems with either so I don't know if I believe her. No known problems with eggs, pork, green beans, or almonds. I was tested for food allergies as child and it came up with corn, rice, chocolate, and apricots. I may have outgrown them- never had a problem eating them once I was older (and now I don't eat them at all). I've been dealing with the shakes and crashes for 7 weeks now, it's extremely hard to stay relaxed when dealing with this. The lack of sleep alone is enough to send me around the bend. I wonder if it's the stress from what's going on making the IR worse, which makes the stress worse, and around we go. The shakes are purely physiological but then cause a good deal of stress because they feel so f---ing bad. LQ >>Fat could help; how big a chunk was it? > > About 2 oz, I'd estimate - 1 end of about a 6 oz breast. Okay, so maybe something like that with some fat; try it and see if, OVER TIME, it helps. One night isn't an answer. >>It may not be the carbs; are you salicylate sensitive? Have a food > [quoted text clipped - 8 lines] > rice, chocolate, and apricots. I may have outgrown them- never had a > problem eating them once I was older (and now I don't eat them at all). Well, some of that is high salicylate. I recall having a bad, shaky reaction to almonds after a stress test, but I'm salicylate sensitive. > I've been dealing with the shakes and crashes for 7 weeks now, it's > extremely hard to stay relaxed when dealing with this. The lack of > sleep alone is enough to send me around the bend. Sure it is, I know that. That's why I think you need to employ a focused discipline to achieve relaxation. You have to clear the stress hormones out of the picture so you know what the rest is like on its own. Plus you'll just feel better. > I wonder if it's the stress from what's going on making the IR worse, > which makes the stress worse, and around we go. The shakes are purely > physiological but then cause a good deal of stress because they feel so > f---ing bad. That's for sure. I hope you get that endo referral. Susan Queen...did you try fibers? If you can't get enough of it through your diet ( 35 g/day -pretty hard to achieve) use supplements. They tend to stabilize BG levels after meals. I am surprised your GP is not giving you a referral. Some places like Joslin accept self referrals. But I am not sure about the insurance coverage in that situation. Weight loss should eventually take care of this problem. I've been eating a lot of vegetables and will periodically swig down a glass of psyllium mix or guar gum (benefiber). I should probably be doing it on a more regular basis, and measure how many grams I'm getting of it. I'm completely "regular" in the other sense so haven't worried too much about it :lol:. I think the intestines are the only part of me that's working well right now...... LQ Relaxation techniques were just about the best thing I ever learned for me and my body. In turn, I used them on my emotionally/mentally challenged daughter with great success in calming her, and she was *far* beyond what we are talking about here. Her situation was life threatening, and whenever she felt that she was going down, she would ask for me to do it. I taught her to go on her journey to her *special place* even whenever she might be in public or surrounded by people. Even breathing techniques help a little bit during the shaky times........ whenever I remember to do it, though. :o) Billie in AR bh-wages at swbell.net ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ That's why I think you need to employ a : focused discipline to achieve relaxation. You have to clear the stress : hormones out of the picture so you know what the rest is like on its : own. Plus you'll just feel better. : Susan I can empathize with the feeling that the shakiness gives you. I get the shakes for no apparent reasons sometimes, and sometimes it is even worse than when I have a low bg. It really does make you feel bad all over, and very frustrating whenever the bg reads normal or a bit high. Having an answer of a low bg is easily rectified with treating the low. If it is normal or above there is nothing to do but to wait it out, even though there *have* been few times that I ate a bit of sweet/carbs and it helped the shakes. Crazy. I have so many other things wrong, and take so much medication so it is hard for me to pinpoint the problem. Good luck! Billie in AR (dx RH in '71) Type 2, MM 715, Humalog Symlin bh-wages at swbell.net ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ : Off to beg for an endo consult, : LQ > Tried a chunk of chicken before bed last night - it lasted until 4 AM > then I woke up with ferocious shakes and I was at 103. Maybe I'll try [quoted text clipped - 17 lines] > > Off to beg for an endo consult, You are very possibly not eating enough carbs now. There is a fine line between too little or too much and the right amount. Too much and you get the typical RH episode, too little and you can remain hypoglycemic. Like before bed I would be having a combo of fat, protein AND some carb. If you are waking through the night have a carb by the bedside. Those little snack packs of crackers with cream cheese or peanut butter are ideal, half of one those should do the trick. It took me a good six months to get a proper routine. At first it as having to eat like the above avery half hour of my waking hours. Unfortunately little and often is the key. > You are very possibly not eating enough carbs now. There is > a fine line between too little or too much and the right [quoted text clipped - 5 lines] > peanut butter are ideal, half of one those should do the > trick. Jan, I think the above is good advice, hard won, but what do you make o the fact that her non carb, protein bedtime snacks allow her to sleep a couple of hours longer without waking and shaking, compared to carbier snacks? I hate to have her trying a different thing every night, not giving herself time to adjust. Any special issues you think she should raise with the endo? Susan > x-no-archive: yes > [quoted text clipped - 12 lines] > couple of hours longer without waking and shaking, compared to carbier > snacks? I can't remember LQ's previous snacks. Unfortunately for severe RH we have to find the thing that works for us. I eventually found my waking hours solutions, including exercise snacks but the only thing that actually worked for me, to get me right through the night was a bowl of Special K with milk and sugar. I can't stand Special K anymore, lol. As a diabetic that snack wouldn't last more than hour. If I didn't wake that was fine, but my RH started a few weeks after giving birth, so I pretty well had to get up through the night and I would always have to have another snack then. > I hate to have her trying a different thing every night, not giving > herself time to adjust. > > Any special issues you think she should raise with the endo? I can't think of any because there are different degrees of RH, different YMMV's and on top of that, even if the hypo isn't reactive, some people can just plain go hypo from not eating enough. My 28 yr old rake thin daughter is like that. She rarely eats much at the best of times but if she goes a few hours with no food she goes hypo in the real sense. Unfortunately it's a case of experimentation. As for me who had to eat a little of fat/protein/slow carb every half hour. Even now, my 9 or so meals/snacks work better in all ways than 3 meals and a couple of snacks. 2 hours was an absolute max time that I could go without food and even today I tend to be like that. At 2 hours I am flagging. It doesn't take much to pep me up again though. > Unfortunately it's a case of experimentation. As for me who > had to eat a little of fat/protein/slow carb every half [quoted text clipped - 3 lines] > today I tend to be like that. At 2 hours I am flagging. It > doesn't take much to pep me up again though. Even now? Wow. When I was RH, 1.5 -2 hours was my max, but it's since extended to 5-6 hours on LC, though I try to remember not to let it go that long. Susan |
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