duffy

PROGLYCEM- diazoxide suspension Usage for Hypoclycemia

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Need your Advice/Ideas:

Quick Background: Had my Gastric Bypass Feb 2016 primarily to get rid of my Type II Diabetes. Almost everything went well. Type II Diabetes-Gone, CPAP-Gone. All other Blood Tests Perfect. However, within 3 months of surgery, started having hypoglycemic events. My endocrinologist referred me to a Specialist Endocrinologist at a University Hospital. Got admitted to a Hospital for Insulinoma Testing. Results-Negative. Was diagnosed with "Post Gastric Bypass Hypoglycemia". Was told to manage through More Protein and less Carb diet. Have played around with diet for past 18 months but no significant improvement. Kept getting hypoglycemic events 2-3 times a week. She started me on acarbose but my stomach could not handle it since the Gas in my stomach was making my daily living miserable.  On Feb 23 of 2018, my specialist put me on Proglycem (diazoxide) suspension. 2.5 ml (Twice Per Day). Magic happened. Not even a single incident of Hypoglycemia. Medicine tastes awful but more than happy to take it. Well since things were going great, I had stopped measuring my sugars. I have having an Arthroscopy later next week and I had to go in for some pre-Op blood testing. My primary said that everything was fine except that my sugar was 282! Huh! I thought it was because I took the blood test without fasting. But then I have taken about 6 random blood sugars including early morning fasting. They are all above 200!! What a reversal from Hypoglycemia to High Blood Sugars!

Question: Is my high blood sugars because of Proglycem? Seems logical. Has anyone has kind of experience taking this medication?  Any alternative medications?

The only thing that comes to mind is that on March 27, 2018 I had an epidural injection of steroids in my C4-C5 for neck/migraine pain management. I know that steroid injections definitely increase blood sugar but it has been two weeks. Would the effect of high blood sugars from steroids remain there for 2 weeks? Anybody have this experience?

I have an appointment scheduled with my specialist next week but I feel gathering additional information from this splendid patient portal site is always a great idea.

Thank you In advance.

 

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Sorry I have no sage advice for your but certainly hope your medical team can come up with answers for you. I've recently been prescribed metformin for my reactive hypoglycemia. My blood sugars will spike to about 200 shortly after consuming most carbohydrates then drop to the low 40s within about an hour due to the hyperinsulinemia. I suspect that in the end the only real answer is staying low carb for life. I was not diabetic prior to my bypass so the diabetic medications and blood glucose monitoring are a whole new and unwanted world to me. For now I'm just focussing my attention on finding what foods will and won't set off a hypoglycemic episode. Lately these hypoglycemic episodes can happen multiple times a day....as soon as one happens, taking in carbs to correct sets the wheel in motion to start another. I pretty much lose the rest of my day once an episode starts.

ETA: The one thing I should have added perhaps is that the higher blood sugars after RNY are usually a result of higher absorption of sugars taking place  in the intestines. Not sure if that equates in your case to diabetes returning or not. Have you had an hbA1c lately. I would think that would be the telling figure in your case. Still waiting to hear what my recent test was, but not really in a hurry to find out even though I think mine will be fine given my blood glucose meter hasn't shown an average above 5.1 (US equivalent is 92).

Edited by Aussie Bear

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Just checked webmd site and this link does say proglycem can raise bloods sugars too high as it turns off your natural insulin response, and gives specific warning regarding using concurrently with steroids.

https://www.webmd.com/drugs/2/drug-11711/proglycem-oral/details

I've had steroid shots into my foot in the past and given they can give relief for many months, it makes sense that this could be the culprit. I'd be very interested to hear how you get on when you see your doctor.

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That does sound horrendous duffy.

I was diagnosed with reactive hypoglycemia after my RNY (early 2009 I believe) but I only react to starchy carbs (breads, cereals (regular or gluten free) and beans etc.).  7g or more of carbs from those sources will see my blood sugar drop drastically.

I can maintain a blood sugar reading of 70–100mg/dL by diet alone.

 

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Thank You Aussie Bear and Cinwa for your responses. After I meet with my specialists, I will post the the follow up. I wish I had kept measuring my blood sugars prior to starting Proglycem and prior to getting the Epidural steroids. That would have helped a lot in analyzing the root cause. Aussie Bear, you are absolutely right that Proglycem has the potential to increase your sugars and so does Steroids. Unfortunately, I am in a zone where I may have to wait it out to understand what happened. One easy and direct way to do that (will discuss with doctor first obviously)   is to stop Proglycem and monitor sugar levels for 2 weeks or so to see if I return back to hypoglycemic levels. The other options is to keep monitoring sugars for about 2 weeks more ( to let the steroids completely get out of my system) and seen if my sugars come down to reasonable levels. 

Serious lesson for me (and advice to others with this condition) is that always keep taking random sugars 2-3 times a week even if everything is going fine.  If you ever start any new medications or go in for any procedures that may involve steroids/other medications, start taking more sugar readings so that you and your doctor have more data to arrive at a reasonable solution if your sugar gets whacked after the new medication or procedure.  

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Duffy,

It would probably be worth you keeping a detailed record of your food intake (including times eaten and amounts/weights) to see if there are things that exacerbate the problem.

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Met with my Specialist Endocrinologist. She is also a bit confused about my situation a little. She has 13 patients that she has manages with "Post Gastric Bypass Hypoglycemia" and all of them are on Proglycem and all are doing well (except that everyone hates the taste of the medication). She is thinking that I may not have post gastric bypass hypoglycemia given my reaction to Proglycem. She is leaning towards that I may just have "Late Dumping syndrome" except for the fact that my sugars actually go down to 40-50 when I have the events. SInce this a a field that has not been studied much, you have to keep going at different options. Here are the directions she gave me. 1) Stop Proglycem and monitor sugars to see if they back to Hypoglycemic levels prior to starting Proglycem 2) Be very vigilant about managing Card intake 3) Add more Protein to my diet. If my sugars start tanking to add Acarbose to meals ( which i know will be disastrous to my stomach given past experience) 4) If my sugars do tank, she may put me on a calcium channel blocker ( see it lowers insulin production) to see how that works. Bottom line, everything is work in progress with no resolution or final diagnosis. My specialist is awesome and very patient and smart. I believe in her and I believe will be able to come to a resolution to this matter.      

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Glad you have options... and someone who will work with you!

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That's great news!

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10 hours ago, duffy said:

Met with my Specialist Endocrinologist. She is also a bit confused about my situation a little. She has 13 patients that she has manages with "Post Gastric Bypass Hypoglycemia" and all of them are on Proglycem and all are doing well (except that everyone hates the taste of the medication). She is thinking that I may not have post gastric bypass hypoglycemia given my reaction to Proglycem. She is leaning towards that I may just have "Late Dumping syndrome" except for the fact that my sugars actually go down to 40-50 when I have the events. SInce this a a field that has not been studied much, you have to keep going at different options. Here are the directions she gave me. 1) Stop Proglycem and monitor sugars to see if they back to Hypoglycemic levels prior to starting Proglycem 2) Be very vigilant about managing Card intake 3) Add more Protein to my diet. If my sugars start tanking to add Acarbose to meals ( which i know will be disastrous to my stomach given past experience) 4) If my sugars do tank, she may put me on a calcium channel blocker ( see it lowers insulin production) to see how that works. Bottom line, everything is work in progress with no resolution or final diagnosis. My specialist is awesome and very patient and smart. I believe in her and I believe will be able to come to a resolution to this matter.      

"Late dumping syndrome", "reactive hypoglycemia",  and "hyperinsulinemia"  are all the same thing. There are varying degrees of it, and only the severe cases require medication....well that's what I've been told anyway. Those most likely to be affected are women, not previously diabetic, and those who were given smaller pouches and a larger stoma (which is what my surgeon told me would by anatomical necessity be happening in my surgery prior to him performing it)...you must have really drawn the short straw Duffy....haha!!!! I had a very unpleasant interaction with my anesthecist on Wednesday when I had day surgery because of my diagnosis. This particular troglodite told me that he has had hundreds of patients claim they suffer it but in reality only seen one that actually did. He is obviously in the vast field of medicos that are disbelievers, which is why research is so limited. He even claimed it is a "trendy condition" made popular by women's magazines dating back to the 1990s. He did admit after seeing my blood glucose diaries that I was indeed his second true case. Not that I really cared what he thought....but he did make me angry enough to prove a point. It also made me feel I was fighting a bit of a battle regarding getting good medical help and understanding moving forward.....but that's for another time. It came up only because my medications included metformin, so he wanted an admission that I am diabetic....which I'm not and never have been. It's not just a bypass thing, but can also happen after significant weightloss without bariatric surgery. The logic is that when we are morbidly obese the beta cells in the pancreas enlarge and release lots of additional insulin. After significant weightloss, the beta cells remain large and pump out far too much insulin for the amount of blood glucose. Hence why some of us suffer even before surgery, and others will have a delayed onset once significant weightloss has occured.

I have an appointment tomorrow afternoon to discus this condition and the cessation or continuation of metformin to help control this. I've been keeping a very comprehensive blood sugar diary that is linked to my food intake, both type of foods consumed and frequency of meals/snacks etc. The one thing it has shown in comparison to the initial diary done prior to the metformin, is that my blood sugar levels now peak even higher than before, and drop even lower since starting the medication. Logically this is not supposed to happen. I can keep the blood sugars stable only if I keep my carbohydrate intake very low and eat at least 6 times a day. Eating is becoming an almost full-time occupation at the moment. It would seem the only carbohydrates immune to these peaks and falls in my case are the lactate in dairy products. I'm very thankful for this because I get much of my protien intake from dairy products.

In the long term, I suspect this condition is something that we are only going to be able to control via our diets and that medications really won't be part of the longer term solution once we know what our personal trigger foods are.

.......and to those pre-op people who say they would choose bypass over sleeve because they think dumping syndrome would be a useful weightloss tool, I say be very careful what you wish for because this condition sucks balls!!!! Eating anything that I haven't prepared myself these days is a total crapshoot. Just some added relish in a meat dish has, and will, send me spiralling down let alone putting sugar in something. I actually had an episode at the local hospital two weeks ago because the woman that served me in the cafeteria gave me a cappuccino instead of a latte....just that small amount of sugar in the chocolate powder sprinkled on top was enough to make the difference between a safe beverage and a nightmare. I wouldn't wish this condition on anybody.

Edited by Aussie Bear

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I did see my doctor today. Long story short he cut my metformin from 2 x 500mg per day (1am plus 1 pm) to 1/2 of a 500mg morning only, with instructions to continue a blood sugar diary for the next week and phone him for further instructions at the end of that week. On the metformin my blood sugars actually increased at the high end from 11 (196 in US)  to 13.5 (243 US), and the lows decreased from 2.8 (50 US) to 2.3 (42 US). His biggest concern was that I could go to sleep at night and not wake up. Scary stuff!!!! He said at least having hypos during the day the body sweats would alert me to the problem. Also instructed to self-correct at 3.5 (66 US). I'm only just managing to hold onto my drivers license at the moment. In Australia there is mandatory reporting to the Motor Vehicles Dept at the levels I drop to which is an automatic immediate suspension of license....as in the doctor phones them in your presence and your license is immediately suspended. Thankfully this doctor and I have a long term relationship of trust, and he knows I'm trying to get this under control and don't drive unless my blood sugars are above 5 (90 US) which is the level required in this country. Refusing to take a glucose tolerance test that my gyn wanted done is the only thing that has allowed him to keep this issue off my medical record for now. Once it hits my record I can kiss my license goodbye!!!!

How are you going @duffy without your proglycem? I do find that avoiding carbs helps, and eating 6 x daily seems to also make a big difference even though I suspect it is as much about stopping carb cravings more than anything else.

Edited by Aussie Bear

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Hi Aussie Bear, So far not bad. Sugars have certainly come down but definitely not down to Hypoglycemic levels. Two things, it takes about 6 days for Proglycem to get out of your system and 2) I had a Right Knee Arthroscopy on April 19 (Drugs used during procedure and no real focus on diet on my part post surgery is probably not providing an fair reading on my sugars). I am hoping that the next two weeks will be a more accurate representation of my sugars. After that my specialist will recommendations based on what she sees. 

Sorry to hear about your issues. If you are worried about your sugars tanking at night you may want to consider wearing the  Dexcom CGM unit at night. Among other things it will start beeping if your sugars goes below a set threshold. I used it for years. Not sure how your insurance works in Australia for getting it covered. 

I wish you the very best.

Duffy

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So now my sugar levels are back to where they were prior to starting to Proglychem. Getting 2-3 Hypoglycemic events per week and for the most part I can relate it the Carb intake prior to the Hypoglycemia (even though the carb intake was not excessive). It would appear that If I managed my carb intake very strictly I would be able to avoid the Hypoglycemic events. However, in reality I know that will be very difficult for me to monitor it in that fashion for life. I am meeting with my specialist next month to explore the very limited options remaining ( i believe calcium channel blockers is a poor option but it could help). 

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13 hours ago, duffy said:

So now my sugar levels are back to where they were prior to starting to Proglychem. Getting 2-3 Hypoglycemic events per week and for the most part I can relate it the Carb intake prior to the Hypoglycemia (even though the carb intake was not excessive). It would appear that If I managed my carb intake very strictly I would be able to avoid the Hypoglycemic events. However, in reality I know that will be very difficult for me to monitor it in that fashion for life. I am meeting with my specialist next month to explore the very limited options remaining ( i believe calcium channel blockers is a poor option but it could help). 

Managing carbs is really the only way to keep it under control. Unfortunately you firstly have to know which ones will cause your issues....anything with white flour or any sugar sets my blood sugars off. Even though I can control that most of the time, it's pretty much impossible if I'm not the one in control of cooking what I eat. Pretty much every time I eat out, I'm in trouble, that's even when I eat with family who know I have issues. I spoke with a bariatric GP last week....she only deals with bariatric surgery patients....and she said in the thousands of patients she's dealt with since specialising in this area, she's only seen true reactive hypoglycemia in 2 or 3 patients. Seems like we drew the short straws Duffy. Her suggestion was to deal with her full time bariatric surgery dieticians,  but she did admit that only the food we have complete control over can be counted on to not contain carbohydrates that might cause us problems. I still don't know all of my triggers and often get caught by surprise. My gynaecologist has told me to get a referral to an endocrinologist,  which I'll likely do when I next see my family doctor. I don't really want to continue on medications though if I can help it.

I have read that others don't have issues with carbs if they make sure to consume protien with them. Unfortunately that doesn't help my situation at all. Thankfully the carbs in dairy foods don't seem to affect me because that is primarily where I'm getting my carbs from these days.

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