Anyone Had Continuous Glucose Monitoring?

[DoozlyGirl]

Hi all,

I have been away from this site for most of the summer. Wish I could say I was off living life, but ongoing computer issues (virus, then a faulty hardrive on 4 month old computer) along with overwhelming unpredictable swings have really taken a toll on me. Now that I got my computer back and we've connected my worst symptoms to glucose dysregulation, I thought I'd post. Looking forward to any thoughts or previous experiences which relate to glucose metabolism issues. I've read all related previous posts, but seem to have a different twist to the expected sugar issues.

My crashes consist of blurry vision, severe onset of congitive issues (as if I was unplugged), severe myalgias, then forced sleep for 90 minutes to 3 hours, when I awaken with tachy, sweating, diaphoresis. I knew we were on to something when eating protein with every meal/snack, including at bedtime, has allowed me to awaken/be alert most mornings! Makes sense, huh? If my body doesn't adequately regulate blood pressure, heart rate, sweating, temperature, etc, why on earth hadn't I connected my issues to food and blood sugars??

A new endo ordered a fasting blood hypoglycemia screen (glucose,insulin, c peptide, proinsulin, insulin AB, etc) to be collected during my symptoms, When all came back normal, she had me come back for a radom draw of the above tests during symptoms after I ate. I had an insulin of 109, proinsulin of 41.8, c-peptide of 7.6 with glucose of 95. There are no reference ranges for random (non fasting)values of the above tests, but only the glucose of 95 is considered normal. Previously, a GTT showed insulin resistence with normal/minimaly elevated fasting sugars. I now know food intake has been triggering reactive hypoglycemia. A nutritionist evaluated my diet, which was ruled out as a source of my swings (nutritionally dense, allergen free, low GI carbs with protein every several hours, no soda, etc). I have been testing my sugars at home for the past month and range from 75 to one episode of 230, with symptoms below 95 and above 125. I was told that 70-120 was considered normal for non-diabetics, but my autonomic neuropathy has prompted continuous glucose monitoring (5 minute intervals for 4 days starting 9/8/11) to get a better idea how my body processes food, the levels which triggers symptoms, and identify my personalized "normal" range. Since "hypoglycemia unawareness" is linked to goofy counter regulatory measures in those of us with autonomic dysfunction, my medical team wants to better understand what my body is doing. Not sure what to anticipate -- diabetes, tumor, or just basic goofy "metabolic fubar" related to autonomic neuropathy, likely related to sudden shifts in sugars...

Any one else with such high unexpected glucose levels after foods that shouldn't warrant the swing or had continuous glucose monitoring? Any other thoughts? Thanks for your input.

[sue1234]

Good for you! You have "with it" doctors. I asked my doctor last winter if I could have CGM because of my roller coaster glucose, and lots of hypos if I don't eat. I suspected my glucose was going low also during the nights. I thought a CGM would be a good record of what was happening.

At first my doctor said okay, then I got a call from the guy who puts them on and does the data collection. We said, "Okay, well let's get you set up to see what your diabetes is doing". I said I don't have diabetes, I have hypoglycemia. Then, all the sudden, he was like, uhhhh, I will have to call you back. Well, he didn't call, but my doctor did, and she said we were not going to do the test. She said that the CGM is not accurate in detecting lows. I said, well if it is an insurance problem, I will pay out of pocket. She said no.

I think it would give a good picture, and I feel like us hypos are being "discriminated" against in this situation! It's like, if your a diabetic, we will go out of our way to do all of this. If you have hypoglycemia, it's like, "Go away, we have better things to do".

So anyway, I would love to hear what your results show.

[lizababy]

My endo requested a CGMS as well. I completed it back in July; however, it was discovered that the sensor was faulty. I am redoing it next week. She has expressed concern about my blood sugars possibly going too low as I have a lot of very random extremity tingling.

Hopefully, I can provide a little more insight afterwards. I know that when I took my sugars the first time it was always around 100 right after eating. I am ot sure what this means though.

[HopeSprings]

How do they do this test? I'd love to have it done. I know low blood sugar is an issue for me.

[DoozlyGirl]

Hi all.

I've reading up on glucose metabolism and while the autonomic nervious system is integral in kicking in whenever blood glucose gets too high or low, most of the sites are related to diabetes. Just learned that the pathway to diabetes has been ongoing for over 10 years before fasting blood glucose elevates. New information emerged recently about the importance in post-meal blood glucose, even though most endos have yet to act upon this important finding. Have yet to find published solid links between autonomic dysfunction, glucose dysfunction AND non-diabetics, yet alone patients with autonomic dysfunction. Most published data focusses on diabetic autonomic neuropathy, but of course that means the person is further down the diabetes pathway (full blown cell death of pancreatic beta cells which translates to lack of insulin production/sensitivity).

Since I have learned that my autonomic neuropathy is absolutely hampered by glucose metabolism issues, I am on the search to understand where in the glucose metabolism pathway my issues lie. This is all helping me better understand my symptoms, and the timing of my symptoms in relation to food intake. There is a whole undiscovered/underpublished world out there in understanding the autonomic nervous system, and not much published data linking our stuggles, but after reading through numerous sites, there is little doubt how much impact glucose metabolism plays in fatigue, muslce pain, cognition issues and brain fog, and stability in the ANS. One of the best sites in describing all this is Blood Sugar 101, written by a diabetic. I was particularly drawn to the article on "How Blood Sugar Control Works-And How it Stops Working." I recommend this site to anyone who has or is considering blood glucose/insulin issues as a piece of their autonomic dysfunction.

I will have CGMS beginning Sept 8 until the following Monday, and my insurance is covering it at 100%, due to my previous diagnoses/labs. A Diabetes Nurse is setting me up. All I know is that it goes into my belly, is taped in place and there are NO restrictions. There is a monitor which will track my meals, symptoms, etc, but I also need to log individual food items and quantity, description of symptoms and other interesting notes. We are hoping to catch the abrupt shifts in glucose, which drop anywhere from 30-50 in 15 minutes, which are likely well before my ANS kicks in and gives me symptoms. I was told the body often recovers from these shifts and often missed with home glucose testing. The article above describes how insulin is released in phases and why insulin release fails. I may not have true hypos (glucose that drops in the 40's or below), but the symptoms of these abrupt shifts are just as real, even if they are known as false hypos. Blood Sugar 101 talks about resetting the relative threshold for blood glucose, which can eliminate these shifts/symptoms.

Sue, maybe my experiences could help convince one of your docs to reconsider ordering the test. My local nutritionist is actually the one who recommended it, then rallied the onsite endo to order it for me. I did need to see this new endo before she could order it. The endo who originally ordered the hypo workup (60 miles away) is leaving her practice, but I do get to see her one last time before she transfers patients to her partners.

lizababy, they recommend 70-120 as the blood glucose range for non-diabetics. Fasting sugars staying below 100 (some say below 90). Timing of the tests after meals is important. Your 100 right after eating is good, but the tests are 'timed' to be 2 hours after eating, as this is when the meal you just ate is actually considered to reach the blood stream at peak.

Naomi, have you been testing sugars at home? If so, any values falling outside of this range 70-120 could very well prompt CGMS. I have read that two random tests above 200 could classify as diabetes and that anyone with normal glucose metabolism will never go above 140.

Would love to continue this discussion after learning more. Thanks for your input.

[sue1234]

I reread your first post and see that you had a high reading of 230. That probably qualified you to get the CGM. For me, I knew insurance would do it for possible diabetes, but found out they wouldn't do it for non-diabetes, and, now know, definitely not for hypoG.

I was curious if either of you have had an A1c done?

[HopeSprings]

I have tested at home several times and especially when symptomatic, but the readings are always normal. However, my blood sugar often comes back low on labwork - not crazy low, but in the 60's. I just didn't understand HOW they'd be able to test it continuously - sooo something goes into your belly? Dozzly, please tell us the details on this once you get it done. The question is even if you capture these big drops in sugar, how do you control it? The neuro I saw last ordered the A1c - just had blood drawn yesterday.

[sue1234]

Naomi, from what I understand, they stick a tiny needle into the "fat" of your abdomen. It is attached to a monitor that is taped really well at that spot. It monitors interstitial fluid glucose levels, and that's where the controversy comes in regarding whether it is accurate at hypo levels. They claim there is something like(I forget) 15% difference from that and plasma levels. My thinking is I don't care if we get accurate levels, I just wanted to see the trends.

I had my A1c done about three years ago and it was 4.9. From what I understand, around 5.0 is normal for normal people. I just did a home A1c a few months ago and it came in at 4.5!! From what I can find, that equals an average of 83. I KNOW after I eat an average meal, I can go up to 130ish. So, to me that means for every 130 I go up to, I had to have gone really low at some point to average that out! I asked for a CGM because I dream really deeply early in the morning(4-6 am), and alot of the time, it is nightmares and I'm always looking for food!! Once, I woke up at that time and quickly checked my glucose and it was 55. Now, that is not REAL low, but it is a low. That's why I wanted to wear the monitor, to see what was happening at night.

[HopeSprings]

Sue - I can totally relate. I sleep very deeply and suffer from nightmares as well - and when I wake up (often in the middle of the night) I am feeling sort of delirious and craving sugar. Run downstairs, shove a donut (or whatever sweet thing) in my mouth and go back to sleep. This also happens when I nap ...which is rare, because napping makes me feel REALLY bad. I also crave sugar badly after each meal. I don't know what it's all about because when I check with the little home monitor it usually registers as normal. Maybe I'm just not capturing it and that's where that test would be really useful.

[DoozlyGirl]

Hello all,

Naomi and Sue, I did figure there would be a needle in my belly with large tegaderm (clear plastic to hold it in place.) I will be sure to write more after the procedure. My A1c has been on the high end of normal for several years ranging from 5.5-6.0. Since this value is used to simulate a 3 month average of blood glucose, this value would miss capturing any of the variation, as highs and lows are averaged in. But the mildly high end of normal value does correspond with my fasting values sitting just above 100. My previous fasting glucose at the clinic was at 85 in June.

Haven't read about the logic differences between CGMS and lab testing, but I have read that home testing has definite accuracy issues compared to lab testing. Home monitoring in general can be up to 20 % off, 10 % on either side. I suppose this is why the nurse has had me test my home monitor along side the clinic glucometer. Sue, Wondering why the endo profession accepts home testing and just deals with the differences, while yours is using this as a justification against CGMS for you?? I recall learning about a generalized controversy between plasma and whole blood testing for all types of testing some 20 years ago while I worked in a hospital laboratory and performed insulin. glucose, and other hormone assays.

I too am looking for trends, but what I can tell so far with home testing is that my symptoms do correlate with values dropping below and escalating above my fasting glucose for that day. For example, my morning fasting glucose was 109, before I could get downstairs to eat, it dipped to 96 concurring with symptoms. After eating a balanced small portion meal, with 40% carbs, 30% protein and 30% fat, my levels dropped 2 hours later to 91, again occuring with symptoms. This has lead to a reactive hypoglycemia diagnosis. I've read that those ranges for hypoglycemia (values below 50 or 60 etc) are actually action levels for those on insulin/diabetic oral meds ONLY. This 50 cutoff does not apply to NON-diabetics. My nutritionist said it's important to figure out where my body has set up it's own thresholds, since my autonomic neuropathy negates any established values out there. While my values above are no where near typical hypo levels in diabetics, blood glucose is expected to rise 2 hours after adequate food intake, not drop. Assessing the trends can help determine where in the glucose metabolic pathway there are issues. I am really interested in learning how to reset my glucose thresholds.

Naomi, I am learning that eating a diet with a 40/30/30 balance with small portions every couple of hours should control these swings and over time, can promote your body to reset it's panic values and prevent the ANS from dumping out counter regulatory hormones to get the liver to convert glycogen to glucose or pull glycogen from the muscles to make up for the real(below 50's) or false (swings) dips in blood glucose which leads to typical hypo symptoms.

Sue, my 230 blood glucose occurred since I have been home testing and neither endo knows about it yet. I believe my random elevated insulin of 109 along with dx of neuroglycopenia (cognitive issues relieved with food = assumption that my brain is craving glucose and just shuts down to conserve energy)and reactive hypoglycemia established medical necessity to satisfy my insurance company.

Thnaks for your posts.

[sue1234]

I think what also contributes to our whacky glucose control is the fact that our body puts out adrenaline whenever we are upright. Adrenaline will naturally elevate glucose levels. So, if that happens, then our body spits out more insulin to lower the glucose. I think that's where we differ from normal people. We have that extra factor working against us that is totally out of our control--unless we lay down forever and not challenge the upright issue!

I cannot imagine why the endo would not delve further into my issues using a CGM. I just didn't have a good doctor like yours, apparently! It makes sense to put it on for three days and see what is going on.

[HopeSprings]

Doozly - can you tell me how/when to home test? I've just tested when feeling poorly, not really correlating it to meals or fasting etc. If I wanted to test over the course of one day, when do I test and what numbers am I looking for? Thanks.

[DoozlyGirl]

Sue, you hit the nail on the head - adrenaline surges, ughhhh! Thanks for reminding me to keep that in mind. I think I will begin to test my glucose laying down and see if that changes my baseline fasting and post meal values. Unfortunately, I have yet to find a doctor who has the initiative to delve into my issues without much preconcieved thoughful planning and preparation on my part. Call it Plan A, B, C, D for what I am asking for every time I see a new or existing practitioner. I'm like a dog with a bone and once they figure out I know what I am talking about and that they can't necessarily answer my questions, they agree to order a bunch of tests. I am just so lucky that the recent batch of tests in this domain are all coming back abnormal! I need to figure out what comes first, the adrenaline surges or the glucose swings.

Naomi, once I considered that my blood sugar control is likely as gooofy as my blood pressure or heartrate, then it became easier to figure out how and when to test. Routine orthostatic blood pressures never caught my orthostatic hypotension, because the procedure used was sloppy. Once I figured out the textbook procedure then "challenged" it, I could confirm my BP/HR issues. Same thing with home sugars testing. My endo gave me little direction and this really didn't get me anywhere. I then figured out the procedure they tell those with suspected diabetes to follow. Test first thing every morning before eating anything, which establishes your baseline fasting sugars. Test 2 hours after you eat, but be sure to log what and how much you are eating. This can determine your carb load at it's peak glucose in your blood, which is readily available to your brain and muscles. Test again with symptoms. Diabetics who are trying to obtain glucose control with diet test at this interval and diabetics on insulin may have to test before and after meals to assess their insulin needs. I was given the range of expected 70-120 for nondiabetics.

I took it several steps further. For multiple nonconsecutive random days, I would test first thing in the morning, before every meal, one hour and two hours after each meal and just before going to bed as well as everytime I had symptoms. This established my trending range, so I know what to expect. My range is between 70 and a few mid 140's on a balanced diet. Reactive hypoglycemia was already suspected, but confirmed with glucose home testing. Then I began to experiment with diet. I know I do ok with less than 30 g carbs (2 slices of bread) each meal/snack. I'd test a day with minimal carbs, then a few days later with more carbs to see what my glucose control is. I kept in mind that one days diet and glucose control sets up the next days glucose and insulin swings. Once my nurtitionist could determine that diet was not at play in triggering my spike/symptoms, this opened the door to massive swings as the trigger. Testing this way can be expensive, but I have found it is chepater to get test strips on Amazon than through my insurance company/pharmacy. I am hoping CGMS will allow for enough data points to better assess what parts of my glucose metabolism is messed up. This way I may be able to figure out how to repair that missing part of the chemical reaction. If only I would have been a better biochemistry student in college!

I am using my undertanding of how the body is supposed to work then figuring out what I can test to further show my specific impairments, which has lead to a methodical rebooting of various body systems. I fully believe I can fix me with the right experts as my guide. I've already made tons of progress over the past 18 months in rebooting other systems.

Please let me know if you have any questions.

[HopeSprings]

Thank you! I'm going to try this.

[HopeSprings]

Doozly - hope you're still reading this thread. I did the home testing today and wanted to see what you think. I had a four hour glucose tolerance years many years ago and the Dr. said my sugar didn't move. It stayed like in the 70's? the whole time. I thought it was all about not dipping below 70, but maybe there's more to it than that? If it doesn't rise or drops, does that in itself mean anything? Here's the results from today:

woke up 7am - blood sugar - 87

7:10am 2 cups coffee w/cream and sugar

8:15 blood sugar- 87

9:15 blood sugar - 97

9:20 ham and cheese on toast

10:15 blood sugar - 78

11:15 blood sugar - 85

11:20 1/2 chocolate bar

12:30 blood sugar - 79

12:35 bagel w/veggie cream cheese

12:45 blood sugar - 75

2:00 blood sugar - 84

2:05 1/4 of chocolate chip muffin

6:00pm blood sugar -90

6:05pm chicken, rice, corn

7:30pm blood sugar - 83

7:40 piece of chocolate cake

I know my diet kind of stinks, but the sugar craving is so intense, it's hard not to give in to it!

Thanks,

Naomi

[DoozlyGirl]

Hi Naomi,

Are you having any symptoms today? I like to start out my day with black tea and 1 t sugar and since I usually don't eat sweets, my nutritionist is not concerned with a T or two of sugar a day. I will crave a square or two of dark chocolate for a few days each month. Glucose levels are expected to rise a bit after eating, and you are right that there is more to it than just staying above 70. The autonomic nervous system is triggered to maintain blood sugar levels in it's balance act with insulin. I'm thinking that your values means your pancreatic cells are producing adequate insulin and the insulin is sensitive enough to help process the sugar/carbs in your diet well enough to sustain consistent blood glucose values. Since your GTT was in the 70's and your fasting is now in the high 80's, I wonder if this means your body is working a bit harder these days to process your carbs/sugars. Was your diet in the past few days similar? I've read that yesterdays intake can dictate todays set point and swings.

Maybe this will help. My body is unable to maintain blood glucose levels and process a carb load that exceeds 30 g carbs without eating 10-15 g protein. Protein and good fats slow down digestion, giving more time for my body to react to the carbs. Without protein, my glucose levels climb above 140 within two hours of eating two pieces of toast. At that level I get symptoms. I also get symptoms when it drops below 90, and I suspect due to the quick fall before glycogen is released to raise blood sugar levels.

Best wishes, Lyn

[HopeSprings]

Lyn,

Yes, I have symptoms everyday and notice more dizziness after eating. I just remembered I also came back with low insulin on one test, but the endocrinologist said it was normal. Maybe it's not sugar related - could be stomach blood pooling issues. Sounds like you interpret my levels to be fairly normal. I tried to find info on sugar that drops after eating, but found nothing. Thanks for looking at this and good luck with your test tomorrow!

Naomi

[sue1234]

Naomi, I'm going to look around, as I've seen something somewhere online about a "flat curve" GTT. I'll share it if I find it.

[DoozlyGirl]

Naomi,

I agree with Sue, since glucose is expected to raise after eating and in the GTT, and yours didn't, this is something to look into. I wonder if your symptoms are related to the velocity of change, not the absolute values, and by the time you test, your ANS kicked in to get glucose levels to a steady level. My response was directed at how your values seem to be pretty steady, which is so different than mine. I've even seen 50 point changes in 20 minutes, and never go below 70, but have symptoms throughout the day. Hopefully the CGMS will shed some light on this for me.

The endo wanted me to see the nutritionist to assess my diet and rule out diet as the trigger to my glucose swings. If I would't have already changed my diet over the years, we would be focussing on eliminating sugars and increasing fiber/protein at this point. Have you checked out Blood Sugar 101 and the pages on insulin pulses? Maybe this fits in your case?

Regards, Lyn

[sue1234]

And, Naomi, it might be interesting to see what your blood sugar does if you take the sugar out. As in, would it still maintain at a fairly even level?? Or, would it drop?? Do you think you could do a day where you cut the sugary stuff out and eat a balanced protein/carb/fat diet and see if you get the same result? It is puzzling.

I think it should just be a standard of care for endos to slap on a CGM for odd people like us.

[HopeSprings]

I found my test. I'm so glad I saved all these records. So the results were:

Fasting - 80

Hour 1 - 65

Hour 2 - 71

Hour 3- 80

Hour 4 - 67

This was from 2001. It was an AWFUL test, I was so dizzy through it. I just remember my Dr. calling and saying something about hypoglycemia because my "sugar didn't move." I'm thinking at some point during the test, the numbers should have gone higher than my fasting state. Maybe this is a variation of normal, but maybe it means something?? Sue - if you find that info, let me know. I'll check out the blood sugar 101 site, Lyn. Thanks.

[sue1234]

I literally have to rush out the door to an unexpected appt. to get medical clearance for my upper endoscopy tomorrow morning. Why they didn't ask 5 days ago when they were setting it up. Apparently not being able to stand up without being lightheaded jumps out of the anesthesiologist's pre-procedure report like a red flag. Thankfully my cardio with a non-open door policy agreed to quickly see me this afternoon.

Good luck Lyn with your monitor today! I have my scope for celiac biopsies and the ultrasound of the pancreas looking for an insulinoma in the morning. It is going to be a whirlwind 24 hours.

[HopeSprings]

Wow Sue. Good luck - let us know how it goes!

[DoozlyGirl]

Had my CGMS applied today and it was a breeze. No restrictions and will wear it until 3 pm on Monday. Had several episodes of neuroglycopenia today and one major crash, so can't wait to see the results. I saw my nutritionist in the hall today and asked her about my 230 glucose. I questioned if I should be open to diabetes and she said while they have no direct experience with beta cell tumors, she's had several conversations with the endo and they are highly suspicious of insulinoma. Hopefully the CGMS will shed some light...

Sue, I learned that the Medronics unit is set for a low end of 40, so will not capture below 40. The diabetes RN educator said it does capture hypos. Please let us know how it goes with your procedures.

Naomi, looking at your GTT, I wonder if your results indicate reactive hypoglycemia (RH)? I routinely have 1 and 2 hr postprandial values that are lower then my fasting and they called it RH, especially since my diet is pretty clean. Let us know if you decide to play with your diet a bit and post your glucose values.