So let me tell you a little about my situation. About 2 years ago I was given the whole pre-diabetic Type 2 speech. I was warned at my then 307lbs that I was border line and although I'd been on metformin for years, I was looking at the potential for insulin needs in my near future. After weighing all my options and doing a lot of research, I started the process for gastric bypass surgery in June of 2010. I ended up having my surgery on Dec 20th. I am now officially 153lbs. Now I've gone to the complete opposite end of the spectrum. I have severe hypoglycemic issues. In order for me to keep myself stable I'm eating something carb/protein balanced every 3 hours. If I eat higher carb, I crash in 2. I'm drinking a 30g protein shake before bed just to try and get through the night. I've never experienced anything quite like this. I've had an abdominal CT done to see if I have an insulinoma (insulin producing tumor of the pancreas) and I do not. I've been presented with the options of injections (not terribly successful) or removal of a portion of my pancreas to try and control my insulin production. Neither of these options seems particularly ideal. I'm trying (through my Endocrinologist) to get the Dexcom CGM but according to Dexcom these devices are only supported for a diagnosis of Diabetes type I or II. I find it odd that low blood sugars aren't considered as dangerous. It's documented that blood sugar readings under 50 can cause seizures and even death. While I don't live alone, I do have a husband that travels for work. He is gone on average 4 days every week. I can't get a monitor to warn me when my blood sugar is dropping so I can eat to avoid a crash simply because I'm not officially diabetic??? The irony that I had gastric bypass to get healthy, and now I’m eating constantly seems bizarre to me. Does anyone else out there suffer from extreme lows? My average BS reading is in the 70’s at any given time of day. Rarely do I spike higher than 110. It is however not unusual for me to drop to as low as 38-45. All of this and yet I’m not Diabetic…… It’s so terribly confusing.
I'm sure there are more complexities to your situation such as pacreatic tumors, but a few questions come to mind:
Were you put on Metformin even though you didn't have a Type 2 diagnosis to help with the insulin resistance common with your previous weight?
Has your endo discussed stopping the Metformin or at least lowering the dose since you've lost so much weight?
You say you are not diabetic. What is your A1C? You say you rarely spike higher than 110. Do you test 2 hours after eating? Especially after a high carb meal? Reactive hypoglycemia can take place for some people when they eat high carb, spike and then crash.
Finally a couple comments: You should not have to be eating more than you want or need to keep from going low. Something isn't right here. I would push your endo to check further or switch endos. Have you had an OGTT where you drink a very high carb sugar drink and then they test you over time to see how you react? Again an A1C would also be useful as depending on when and how often you test you may be missing spikes. However because you have frequent lows your A1C will be averaged down and that might put you below the diabetic range when in fact you are diabetic.
I agree that lows can be as dangerous as highs and more so in the immediate sense. Most doctors actually lean too far in that direction - thinking highs are ok to prevent lows. I don't know how many strips you get, but as frequently as you can test to see lows is good - your doctor can over ride insurance to recommend more or you can buy them otc.
Finally I would keep very thorough records of blood sugars and what you eat. It would be useful to see if the lows are coming in any particular patterns. The more records you have the better to present your doctor with useful information.
Hopefully you will get some help soon to improve your situation!
Wow thats crazy!Good Luck to you! My daughter is type 1 and her lows have been as low as a 29.... very scary, but was able to bring her up quickly with some fast acting carbs like skittles, juice, or sugar packets.... maybe try carbs and protien together because apparently the protien holds the carbs longer!!! Good luck
Actually. I've just recently changed Endo's. I've also been off the metformin since the two week liquid diet that I did before my bypass in 2010. According to my current Endo, based on tests he's ordered over the last month, we feel this issue is my body simply has not adjusted to my new weight. I've just leveled off in my weight loss post surgery in the last 3-4 months. My pancreas apparently is still producing the same amount of insulin for my previous 307lbs insulin-resistant self. We hope that over time it will adjust which is why we've discussed not removing part of pancreas at this time. Hence the CGM idea. I do have a meter and get plenty of strips and test frequently but the CGM could give me constant readings and potentially help with management. I think My biggest problem is the idea of eating constantly. Especially since I went through such extreme measures to get all that weight off.....
Thanks, I'm working at staying positive :)
That all makes sense. I lost 40 pounds at Diagnosis, much less than you are talking about, but it shifted many things in my body such as my blood pressure and cholesterol levels.
I can understand why he wants to put off more drastic action at this time. But I would still push for more definitive testing and diagnosis. Many doctors just say something like "you're fine" or "you don't have diabetes". If it were me, I'd want numbers.
Yes, I can understand why it bothers you to have to eat a lot. Though I didn't have to deal with the weight or bypass issues you have, I have 17 years recovery from an eating disorder. I had 13 when I was diagnosed with Type 1 and had a lot of issues to deal with - such as having to eat and weight and measure food (which to me said "obsess") and having to eat "sugar" which I haven't done in 17 years. When I'm low I just take glucose tabs and consider it medicine, but that's just me and my own bias..lol
Update on my struggle to get my CGM.... just a wee bit frustrated at the moment....
I've had it!!! It's crap like this that makes people go postal!!! Have just spent the last little while finding out the big problem is my ICD9 code is 4 digits and in order to get my device I have to have a 5 digit ICD9 code. We've been trying to get this device for 20 days now. Someone in their infinite wisdom has automatically decided that the exact opposite of Diabetes type I (the hypoglycemia 4 digit code of 251.2 I've been assigned) isn't CGM meter worthy....however if I had a Diabetes related Hypoglycemia code (which is 5 digits) there wouldn't be a problem. According to my Endo, I DON'T HAVE DIABETES, I HAVE THE EXACT OPPOSITE!!!! Apparently, I'm the only weirdo in the whole world with this issue. Could be another 17 days (as we are now in another precert process) and the answer could still be "no". Seriously, just shoot me. I'm starting to rethink the whole removing part of my pancreas option. Then if my body does ever adjust to my new size and my insulin production reverts to normal levels, hey, then I could officially reach Type I status, and qualify for the CGM.....IRONY at it's finest!!!! Sometimes I wonder why even bother.....
Ugh. That is very rough to deal with. I think you really need a CGM too :(
Can the endo write a letter stating that you need to have it to prevent you from being potentially hospitalized which will cost your insurance company a hell of a lot more than just paying for the darn CGM?
I dunno. Just a thought.
Maybe if you are denied again, contact the company that makes the CGM and see if there is any way they can help?
My Endo has submitted the written request for the CGM to my insurance as of today so we might be making some progress. Could still get a turn down as we are just in a pre-certification stage which could take another 17 days to complete. The hold up was apparently with the CGM manufacturer. My insurance says it's not a problem but the company (Dexcom) apparently never submitted the request to my insurance (Aetna) because my diagnosis code wasn't the 5 digit code and they just automatically said their device isn't approved (under any insurance) without a Diabetes diagnosis. So for the last 20 days my insurance never even had a request for the device. They didn't receive the special needs request until the 29th from a Dexcom distributor.
Tonight is a prime reason for trying to get me the GCM. I ate at 7pm. Had pizza (not necessarily a supreme choice) but did do a protein heavy version accompanied by a BLT chopped salad with a significant amount of cheese (again for higher protein count). It's not even 10 pm here and I just checked my BS with my manual meter and I'm 57. I just started to feel the symptoms of the drop. The shakes, the sweating, etc and I'm already that low. Luckily my husband came home today and was able to prepare me something (my normal bedtime shake to get me through the night) otherwise I'm not sure I could manage making anything myself and would go for candy or some other fast sugar to recover. Having the CGM would allow me to set alerts for lows which is what people with Diabetes do for their Highs.....why isn't this seen as a valid need?? Still confuses the crap out of me......
I appreciate everyone's comments and support....just having a place to rant and vent the frustration helps a great deal :)
Your story sounds familiar my sister in law had the surgery about 6 years ago, she really had no choice and was using over 1000u of insulin every day. She had some low BG issues but has learned to deal with it and she no longer uses any insulin or oral meds for BG control. The biggest long term health issue she has developed so far is Osteoporosis here body has trouble utilizing calcium in her diet and also has absorption problems with oral supplements.
Have you tried a letter of medical necessity from your doctor. Yes the CGM is FDA approved for diabetes but this does not mean a insurance company would not or should not cover it. Many years ago everyone including my doctor said UHC would not cover CGM in fact they had never payed for one....but they paid for mine don't give up if you have not gone through the appeal process with your insurance carrier your not finished..."don't give up"...!
It took my sister in law several years to get her life back together after her GBP. The best treatment is carbohydrate avoidance or restriction. Some doctors prescribe Acarbose, this drug slows down absorption of starchy foods and carbohydrates.
Hi,
I'm really sorry for your troubles! It sounds awful!
I don't know anything about the effects of gastric bypass, and this is something you and your doctor have probably already investigated, but has he checked your thyroid levels recently?
Best wishes for a good and rapid solution for you!
Marty1492
Actually, you may find that a CGM isn't really worth the hassle. I'm a type 1 and have used two different kinds of CGMs (Dexcom and the one that is integrated with my pump through Medtronic). For me, the CGMs were helpful at picking up on trends and patterns and thus helping me adjust my basal rates on my pump, but I actually didn't find them that helpful at alerting me to lows. Sometimes my CGM would tell me I was low when I was actually in normal range (and this led to treating of said low unnecessarily and then causing a wicked rebound high). In addition, I still had to test the old fashioned way (using my meter) and the results were pretty far off more often than not.
Even if you had a CGM and it said you were low, you would still have to test with a meter to ensure that you were actually low.
You may want to talk to your endo about medications that could increase your BG levels. You should also have glucagon with you at all times in case you have a severe low.
The CGMs are just not terribly accurate and I don't know if the cost and hassle (inserting a sensors, the risk of infection, etc) would be worth it in the long run.
I wish I had known all of this was a potential post surgery. Sure they tell you about all the other life threatening things when trying to scare you, but they don't tell you about the annoying things like this. Not that I would take back the surgery because I don't think I would. I think however I might have been better prepared instead of getting blindsided.
Funny you mention Thyroid Marty1492, I'd been stable in that area since I was 22 until recently. I'm back on track now in that area after lowering my dose too low and then raising it back some. I went from 200mcg to 150 right after surgery and am now back at 175mcg. The last two TSH tests have reflected that is now stable.
I think JohnG's comment about carbohydrate avoidance may be something I have to consider. Adding in everything else, I'm also gluten intolerant. Most of the breads, etc for people with gluten intolerance are higher in sugar, etc to accomplish a good taste. While there is a bit of a misconception that a GF diet is healthier, it's actually not. Maybe my best option until getting the CGM would be to completely limit the amount of fast carbs in my diet. It's not like I eat a lot of them anyway :( To be honest it's only been recently I've started to add more variety back in.
Thanks again for all the ideas / suggestions.... this is all so new to me..... I'm learning more each day and trying to look at it in a positive light. Maybe my story can help someone else :)
I agree. I love my pump, but have no desire at all for a CGM. From everything I hear they aren't that accurate and I don't want two things attached. Also they wake you up continually with alarms which would make me suicidal. (is there a word like homicide when it's a machine you want to kill?). Finally I don't wear a watch because I don't want to look at it obsessively so I don't want a CGM for the same reason!
Just in case it's relevant, some people here feel that the TSH test isn't sufficient for diagnosing thyroid issues. I don't know enough about it, myself. But one suggestion might be to evaluate the symptoms you are actually having, and whether they seem like hypERthyroid. I know that when my thyroid medication dose has been too high, I'll feel like I'm starving all the time. You have enough other complex physical situations in your life that it might be hard to separate out relevant symptoms, but it might be worth exploring further.
Most of the information I find has to do with hypO symptoms and situations, but there is hypER information out there also.
Two links that Gerri, here at TuDiabetes, passed on to me are:
And there are many other links in the Hypothyroid Diabetics group here at TuDiabetes in the "Cytomel Hell" discussion.
Best wishes!
Marty1492
In decades past an official diabetes diagnosis has a lot of societal, insurance rate, job qualification meaning so docs avoided it until the patient was having limbs amputated from gangrene. And many of those "penalties" still exist even if banned by law, so I bet some docs still avoid making it official. But again if you were taking metformin for years you were diabetic, and that must count for something in getting the help you need.
That said if you know the patterns of when low bg's are most likely, and what to watch for symptom wise, possibly with some sharing from folks here (I myself have had more hypos than you I'm sure!) I think you can be doing better without the fear of hypos permeating everything.
Update: After several denies by the insurance a peer review was done between the Medical director and my Endocrinologist. My Dexcom has now been approved. I should get it today or tomorrow. Here is a link to a TV News spot that we did here in Kansas City on Fox4
http://fox4kc.com/2012/03/16/woman-succeeds-with-gastric-bypass-faces-dilemma-with-insurance-co/
Not sure if this had any influence or not but I did give the reported access to my medical records regarding this issue. I know she placed many call to Aetna herself.
Now the fun begins: getting used to having this device less than 8ft away from me at all times :)
Thanks for all the responses,
Great news!!! Congratulations!!! I’m just sorry it took so long to get everything approved and that it took so much effort. But I’m glad there was success!
My son has had hypoglycemia since he was 2 months old. He is 28 now. His glucose levels will go down to the 30’s. He is on a medication called Proglycem that increases the glucose levels. It works wonderful…when he takes it. He HAS to take it twice a day. I am also struggling with the insurance company to get him a continuous glucose monitor. He is mentally challenged from all the seizures he has had in the past. He forgets to take his medicine sometimes and his blood glucose will drop, leading him to have a seizure. I’m not always home to remind him to take his medicine, so I need some kind of monitoring system to alert me when he is going low.
I would ask your doctor about taking Proglycem to increase your blood glucose. Especially if you can’t control with diet.
My first thought was " dumping syndrome" post gastric bypass. Then I found this on Livestrong:
While symptoms of Dumping Syndrome can occur shortly after surgery, post-bypass hyperinsulinemic hypoglycemia begins a year or two after the procedure. Symptoms caused by an increase in insulin secretion may include tremors, palpitations, sweating, hunger or anxiety, as well as more severe symptoms of fatigue, confusion, seizures and loss of consciousness. Attacks generally occur within one to three hours after meals and increase in frequency and severity as time goes on.
Nancy