Aussie Bear

Is there any merit in having reactive hypoglycemia formally diagnosed?

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I've recently had a few medical professionals tell me that some ongoing health concerns are indicative of diabetes. They've been turning me into a bit of a pin cushion if I'm honest....and it is really annoying me. So far they're only doing fasting blood sugars which are always low range normal. Curiosity though had me pull out a glucose monitor (when I've been feeling pretty off)  and the readings have been pretty eye-opening, with very high readings followed later by very low readings after meals containing any carbohydrate. I was always fairly sure I was suffering reactive hypoglycemia, although never had the proof. Other than knowing this myself and taking the step to avoid the carbohydrates everyone seems to want me to increase, is there really any value in having this formally diagnosed? To be honest just the thought of having a full glucose tolerance test makes me cringe. Not because of the blood draws, rather because I know how unwell I'll be until my body balances out again after the test, and our local pathology centre is really an uncomfortable place to wait around in (uncomfortable unsupportive chairs in a very public waiting area) when I know the reaction I'll have to the glucose load will force me to need to lie down.....and very likely need to sleep off the glucose load.

I'm interested to know if others that suffer this have just self diagnosed and adjusted to it themselves, or if they have been formally tested. Also, if you have reactive hypoglycemia and had a glucose tolerance test, how did you find the experience. Has having a formal diagnosis made any difference at all to how doctors treat you, or is there really nothing they can do anyway.....making the diagnosis a useless inconvenience?

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First thing that comes to my mind is that you may be able to get medication to keep your bs under control. You don't want it fluctuating up and down too much if you are able to control it.

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1 hour ago, Readytobeme said:

First thing that comes to my mind is that you may be able to get medication to keep your bs under control. You don't want it fluctuating up and down too much if you are able to control it.

I'm pretty sure there is no medication that will stop the fluctuation. Using glucose tablets just causes the cycle of high then low to start over again. Diabetics can take insulin to help their intolerance issues, but reactive hypoglycemia occurs when insulin response is very efficient. A bit like you can take medication to lower blood pressure when you suffer hypertension, but the same doesn't happen when someone has low blood pressure to be able to raise it. Then again, that's why I've asked the question, to find out from those that have this condition what (if anything) can be done to help manage symptoms.

Edited by Aussie Bear

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Oops, sorry. For some odd reason I was thinking that you were talking about diabetes. I have been so tired lately and I guess that I had a brain lapse while reading this.

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I was diagnosed during my second pregnancy.  With my first pregnancy, the GTT was normal when they drew blood, however it hit me after I left while I was driving which was terrifying.  I pulled up to the stoplight and couldn't remember whether green meant stop or go!  So, with the second pregnancy (having told my dr of that) they did a longer time period and sure enough it bottomed into the 40's. 

The only management really is diet.  I cannot consume pure carbs ever or I end up a shaking, sweaty, babbling mess.  I learned what worked for me which is likely what you'll have to do as well.  This all happened way before WLS and it really hasn't changed post-op.  Well, except that I now don't really do much sugar at all anymore so that helps a great deal.  I just know that if I eat high sugar fruit that I need to have a string cheese or PB with it. 

As far as whether official diagnosis is helpful or not, I guess it really only would be if you needed to have some sort of accommodation at work or school (such as being allowed a snack), or if you were hospitalized it would be helpful for medical providers to have that information.  Otherwise, I can't really think of a compelling reason to pursue a diagnosis if you don't want to.

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4 minutes ago, msmarymac said:

I was diagnosed during my second pregnancy.  With my first pregnancy, the GTT was normal when they drew blood, however it hit me after I left while I was driving which was terrifying.  I pulled up to the stoplight and couldn't remember whether green meant stop or go!  So, with the second pregnancy (having told my dr of that) they did a longer time period and sure enough it bottomed into the 40's. 

The only management really is diet.  I cannot consume pure carbs ever or I end up a shaking, sweaty, babbling mess.  I learned what worked for me which is likely what you'll have to do as well.  This all happened way before WLS and it really hasn't changed post-op.  Well, except that I now don't really do much sugar at all anymore so that helps a great deal.  I just know that if I eat high sugar fruit that I need to have a string cheese or PB with it. 

As far as whether official diagnosis is helpful or not, I guess it really only would be if you needed to have some sort of accommodation at work or school (such as being allowed a snack), or if you were hospitalized it would be helpful for medical providers to have that information.  Otherwise, I can't really think of a compelling reason to pursue a diagnosis if you don't want to.

Agree with @msmarymac - only management is diet

@AussieBut it sounds like you have documented this... I mean if you have the glucose meter measurements for the couple of hours after a sugar load, then you could probably just give those to your docs and call it a day. The relevant numbers on available on the internet as a benchmark. I'm pretty sure you can buy one of those bracelets with your medical condition(s) on it without it having to be approved by your docs!

If you passed out someplace, or got hauled out of your car after an accident at least the EMTs could give you a shot of some glucose while they hauled you to the hospital. 

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@msmarymac and @BurgundyBoy.....that's what I thought. I will tell my doctor when I see him next week. I did do the conversions to the US measurements on Tuesdays results and after meals the measure jumped to 200....after sixty minutes it was down to 50. It took another hour before levelling out at my usual 85-90 level. 

I also had these symptoms in the months before my surgery....that was after significant weightloss though.

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19 hours ago, Aussie Bear said:

@msmarymac and @BurgundyBoy.....that's what I thought. I will tell my doctor when I see him next week. I did do the conversions to the US measurements on Tuesdays results and after meals the measure jumped to 200....after sixty minutes it was down to 50. It took another hour before levelling out at my usual 85-90 level. 

I also had these symptoms in the months before my surgery....that was after significant weightloss though.

Wow, you have it. Write it up, including the name of the device you use, and there you are. 

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15 hours ago, BurgundyBoy said:

Wow, you have it. Write it up, including the name of the device you use, and there you are. 

You sound surprised BB. I never really doubted I had it, but was surprised by the numbers for some reason. Having another episode right now. It's driving me nuts. Just clocked my lowest reading ever....into the 40s this time. Thankfully I'm not driving at the moment.

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Oh, like you only surprised by the height and depth of your readings. Sorry this is happening to you!

Can I ask if this happens even with "low glycemic index" carbos?

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5 hours ago, BurgundyBoy said:

Oh, like you only surprised by the height and depth of your readings. Sorry this is happening to you!

Can I ask if this happens even with "low glycemic index" carbos?

Unfortunately the Low GI will also do it although I'm not sure how high or low the readings will spike as I've really only just started measuring. Yesterday's came after a wholemeal grain sourdough roll that I had as a late (read very late) lunch. I didn't catch the high on this though as I fell asleep......only woke up to the low.

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Here's hoping you can find things, either because they are low GI or small enough quantities, that you are ok. 

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I have issues with this as well. The program's internal medicine guy said: smaller portions, all six meals should be about the same size, watch the carbs (NB they do NOT advocate a super low-carb diet), and eat more slowly. Better to prevent a spike/fall than to deal with one. 

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13 hours ago, Carina said:

,all six meals should be about the same size, watch the carbs (NB they do NOT advocate a super low-carb diet), and eat more slowly. Better to prevent a spike/fall than to deal with one. 

Crikey Carina....if I had six meals a day I'd have no time for anything else but eating. I admit it probably is the best way to eat these days.....but it's hard enough now planning for three meals with a snack or two. I guess it's really all trial and error....im just sick of the high error rate I seem to be getting right now.

I'm going away for the next few days and will be driving many hours each day. My plan is to stick to the protien while away and try a few other things when I get home again. I just can't afford to lose time with lows with my schedule. I'm told the standard here is "5 to drive" (US equivalent is 90 mg/dl), any lower and you can invalidate your insurance.

Edited by Aussie Bear

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5 hours ago, Aussie Bear said:

Crikey Carina....if I had six meals a day I'd have no time for anything else but eating. I admit it probably is the best way to eat these days.....but it's hard enough now planning for three meals with a snack or two. I guess it's really all trial and error....im just sick of the high error rate I seem to be getting right now.

I'm going away for the next few days and will be driving many hours each day. My plan is to stick to the protien while away and try a few other things when I get home again. I just can't afford to lose time with lows with my schedule. I'm told the standard here is "5 to drive" (US equivalent is 90 mg/dl), any lower and you can invalidate your insurance.

Haha, well, I use the term “meal” loosely! Protein shake...cracker with cottage cheese and cucumber... 

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@Aussie Bear, if you're going to be doing a lot of driving, make sure to bring your meter with you and have something handy to consume if your sugar falls below 70. 50's and 40's are way too low, and need to be treated when that happens.

Check your sugars often :) 

Edited by Nana Trish

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On 25/03/2018 at 2:57 AM, Nana Trish said:

@Aussie Bear, if you're going to be doing a lot of driving, make sure to bring your meter with you and have something handy to consume if your sugar falls below 70. 50's and 40's are way too low, and need to be treated when that happens.

Check your sugars often :) 

I'm home now (arrived back about an hour ago). I did make sure I had bananas and protien drinks in the car....very glad I did because I really needed them on the trip down. Talked to the doctor about it and he was shocked at how low my blood sugar drops. I've now been instructed to provide a week long blood sugar diary, which he insists he'll follow up on next week if it doesn't hit his desk on Tuesday. Kind of wishing I hadn't said anything now because he told me there is mandatory reporting to our drivers licence authority for patients with blood sugars that fall that low. He's kept it off my record for now but not sure how long that will hold out....and I'm not sure what the consequences would be for him disclosing the condition.

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@Aussie Bear, I'm so glad you made it to your destination and back home safely, and SO glad you brought food with you to counteract the low sugar episodes. I completely understand where you are coming from with not wanting your doctor to report your condition to your drivers license authority. Please take this as it is intended...concern for you. I think with sugars that low, it is necessary for him to report it. For your safety as well as that of other drivers. I know the consequence may be limited driving, and I hope that doesn't happen, I truly do. But I also do not want to hear that you've been injured or God forbid killed in a car accident bcause of this. My sister is epileptic, and she needs a doctors report each time she renews her drivers license (every 8 years here in New York) that says she has been seizure free, or what the current state of her epilepsy is. She drives every day and has been successfully treated for years. I know there are treatments for hypoglycemia, which it almost definitely sounds like you've developed. Sending loads of hugs your way, and know that I'm thinking of you ❤️❤️❤️

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9 hours ago, Nana Trish said:

@Aussie Bear, I'm so glad you made it to your destination and back home safely, and SO glad you brought food with you to counteract the low sugar episodes. I completely understand where you are coming from with not wanting your doctor to report your condition to your drivers license authority. Please take this as it is intended...concern for you. I think with sugars that low, it is necessary for him to report it. For your safety as well as that of other drivers. I know the consequence may be limited driving, and I hope that doesn't happen, I truly do. But I also do not want to hear that you've been injured or God forbid killed in a car accident bcause of this. My sister is epileptic, and she needs a doctors report each time she renews her drivers license (every 8 years here in New York) that says she has been seizure free, or what the current state of her epilepsy is. She drives every day and has been successfully treated for years. I know there are treatments for hypoglycemia, which it almost definitely sounds like you've developed. Sending loads of hugs your way, and know that I'm thinking of you ❤️❤️❤️

I knew exactly what your intention was in writing this post Nana Trish. I admit I have juggled with this decision at moments in time. I discussed this issue with my doctor....the 8 hour round trip drive was specifically to have that appointment. My logical self says I was concerned enough to discuss this with him, so I need to follow his advice. Added to that I chose him because he is so thorough, and I wanted that in the doctor I was relying on to manage my post-bariatric health into the future as my surgeon follow-up are being cut back. The two driving days showed no highs or lows on testing because I was so careful with eating/ drinking and I will notate that on the diary so he knows I made an effort to ensure I was safe (as we're other road users). Tomorrow I have an appointment with the visiting general surgeon here for an unrelated minor issue....it just happens the visiting surgeon is my bariatric surgeon, so I'll raise the issue with him (if I get the chance) and see what he says. I expect he'll just handball it back to the family doctor though. 

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On 3/27/2018 at 1:39 AM, Aussie Bear said:

I'm home now (arrived back about an hour ago). I did make sure I had bananas and protien drinks in the car....very glad I did because I really needed them on the trip down. Talked to the doctor about it and he was shocked at how low my blood sugar drops. I've now been instructed to provide a week long blood sugar diary, which he insists he'll follow up on next week if it doesn't hit his desk on Tuesday. Kind of wishing I hadn't said anything now because he told me there is mandatory reporting to our drivers licence authority for patients with blood sugars that fall that low. He's kept it off my record for now but not sure how long that will hold out....and I'm not sure what the consequences would be for him disclosing the condition.

Sounds like you are on all-protein foods when driving or "operating heavy machinery" as they say here (how many of us drive heavy machinery??). No reason not to do some experimentation to find out what keeps you level. Good luck on this, not being able to drive (or drive safely) is a drag!

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7 hours ago, BurgundyBoy said:

Sounds like you are on all-protein foods when driving or "operating heavy machinery" as they say here (how many of us drive heavy machinery??). No reason not to do some experimentation to find out what keeps you level. Good luck on this, not being able to drive (or drive safely) is a drag!

I actually got caught out by a breadless burger that I had at a Cafe with one of my kids at lunchtime. I swear the relish they put on that thing must have been 100% sugar. I was about to head onto a no stopping freeway when the hypo hit. Once I dealt with that it was like I was playing catch up the rest of the day, just trying to prevent the high I had just induced from wearing off. I usually have to sleep my hypos off.

I was surprised when I read my latest specialist referral that my doctor had added "sugar" to my allergy list. I'm not sure I'd call it an allergy although it certainly causes a reaction. I might use that excuse next time someone nags me to eat some kind of sweet treat with the "one won't hurt you" line. I really can't stand those kind of people who won't take "No" for an answer.

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You do NOT want to sleep if you are that low, it can be very dangerous. Like, slipping into a coma, having a seizure kind of dangerous. 

Also, for a while they were experimenting with some medications for reactive hypoglycemia in bypass patients...i can't remember the name but I think it started with an A. It basically blocked carb absorption or something? Might be worth looking into. 

Hugs. Low blood sugar is scary. My daughter had a few episodes a month ago due to the flu and not eating enough (so not reactive, just regular low blood sugar) and it was terrifying as a parent. We were a few minutes from heading to the ER if it hadn't come back up. 

Edited: I found the article. A brief scan says yes, this is worth further looking into. Not only are there a few medications you can try, but they also need to rule out an insulinoma. If your current doctor doesn't have the experience to deal with this you may need to seek out one that does. https://www.mdedge.com/ccjm/article/134721/diabetes/hypoglycemia-after-gastric-bypass-emerging-complication

Edited by ktgrok
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Thanks for your response @ktgrok. My doctor does seem to know what he's doing.....that's why I chose to have him do my regular health monitoring despite the fact that his practice is a 4 hour drive from my country town.  When he was practising locally, he kind of drove me a bit nuts with his tendency to overtest stuff....now I'm actually happier that he does. He has told me that he suspects it is hyperinsulinemia due to late dumping syndrome post RNY. Mind you I was experiencing some hypoglycemia symptoms prior to my surgery...i just didn't know what they were at the time and my doctor at the time really wasn't interested. I don't know if that is just another name for hypoglycemia or not, but I expect he'll be telling me once he gets my blood glucose diary. I've been having regular abdominal/pelvic CT scans since before my hysterectomy in 2/15....while my most recent doctor decided they were unnecessary now, this doctor has already told me he'll be bringing them back.....I do have oversized peri-portal lymph nodes, although their size hasn't changed in time they've been being watched, and nothing else untoward is showing up.

I have been googling (trying to stop for now though because I'm seeing far too much scary stuff) and had actually read the article you linked....along with many others. I was aware of the medication option (Acarbose) and both surgeries being used as treatment options. There appears to be lots of negative studies regarding pancreatectomy being an effective treatment, and in my case anyway, my revisional surgery came about because a reversal of my previous surgery was just not possible. So with that being the case I would not even consider a surgical intervention even if it was on the table later. To my way of thinking, all these various preconditions (other than pancreatic tumours of course) seem to be best treated by dietary means so certainly need to be the first approach. My current doctor is watching this now and was very insistent that there be a blood sugar diary from me on his desk on Tuesday morning.....I know I'll get a phone call if there isn't....so rest assured that he's not going to let this slip by. He'll have a plan of action in mind dependent on what he sees in the diary. Given it is Easter weekend there will no doubt be an episode or two (hot x bun day today, and Easter eggs Sunday) that will show up. I did think about trying to eat carb free for the week, but decided that defeats the whole purpose of the diary.

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I'm glad he's thorough, and it sounds like you are in good hands. I definitely agree diet is the way to go as a first try at treatment! And knowing how rare insulinomas are and that you have regular abdominal scans yeah, sounds like it's over production of insulin because of bariatric surgery. Which sucks, but better than a tumor I guess, lol. I hope diet works! And definitely be careful - if it goes low again keep checking until it is back up, and if you can't get it back up you need to go to the ER. Or discuss with the doctor what he wants you to do, and at what level. 

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Oh the irony....for the whole time I've been on this site I've loved reading former diabetics talk about coming off their diabetes meds....yet today after losing more than half my bodyweight,  I was prescribed metformin.  Not overly impressed with this turn of events. The logic is that if they can stop the blood sugar surges then the hyperinsulinemia will decrease thereby stopping the severity of the hypos. Also had my first ever hbA1c test. At least I managed to talk my gyn out of ordering an OGTT. Not sure I'll have the same luck with my family doctor when he decides he wants one done, because he is a much harder task master.

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