I am looking for someone who shares my struggle with chronic lows. I mean I literally go unconscious and come back to consciousness on my own. I am 48 and was diagnosed T1D at the age of nine. All through my life I have been through this same low blood sugar struggle over and over. . . . .I broke my left wrist on the 4th due to one of my low blood sugar episodes and what bothers me is that I can’t keep breaking bones because of this and this is getting worse for me. So far these lows have caused me to break my back (shattered 2nd lumbar), break my nose 5 times and now my left wrist. It’s not so much the going unconscious part; it’s when I am trying to come back to consciousness. Anyone else struggle with this? I know I’m not the only one. I need some support.
Hi @Kelly7 Kelly, wow that sounds awful.
When I am not in my normal routine I have a fair share of both high and low blood sugars. I would say I have 9 or so times a week when I am lower than 70mg/dl. I would say I have 2 times a week lower than 60 mg/dl and 2 or 3 times a month lower than 50 with less than 1x a month lower than 45 mg/dl and according to my finger stick meter.
Do you use MDI, do you pump, do you have CGM?
I also have good hypo awareness. Even after 40 years of type 1.
So I guess I have chronic lows but nothing like what’s happening to you.
Hi Kelly, I read the message you sent to my email and replied but I am not sure you received it. It would be nice to speak with you about what you are experiencing. I have had similar issues and understand the frustration when gaining consciousness again. If you want to talk, please contact me springrhea2@gmail.com.
Hi Joe. Thanks for responding. I am not sure what MDI is, but I do have a pump. I think its the Medtronic 670. I do not have a CGM because Medicaid here in Colorado won’t pay for it. I don’t feel my lows very often anymore, and that is where I struggle. During the day I test about every hour, but at night is when I will have problems because that is the longest period that I go without testing. It is stressful on me and for my husband who deals with my “nastiness” when I’m that way.
Have you spoken with a Medtronic Rep or Trainer about this? If youre having these issues at night, something is wrong with the settings in the pump. Either Automode or Suspend Before Low should prevent you from dropping dangerously low due to basal.
Incorrect carb count, incorrect bolus estimate settings, and possibly stacking corrections by entering fake carbs are the only way to get really low blood sugars while using the 670G and Guardian 3.
Diabetes is biology, not rocket science. While unpredictable, it’s definitely manageable. I think you need to have an expert check out your pump.
Hi Kelly @Kelly7, you certainly have been through a lot because of your unawareness of low glucose/sugar levels. MDI is multiple daily injections - you are using a pump so you wouldn’t still be using MDI. You are not using a CGM so we can assume that your Medtronic 670G is in manual mode rather than automatic.
I’m not a medical doctor so I can’t give you ‘medical advice’, but I will offer you suggestions learned from many decades of trying to live an active, full and varied life. My first suggestion in addition to talking with and getting advice from your physician, is to properly set the basal rates used by your pump, validate those rates by extended fasting while checking your BG [blood glucose] at least every two hours, calculate your insulin sensitivity for several times during the day [including night], and once your basal rates are working for you, set about confirming and correcting your insulin: carb ratios for your bolus doses. All this stuff, including worksheets for basal, sensitivity, and bolus dosing is in your Medtronic User Manual.
If you need help and specific guidance be sure to ask. I, and many other members here will be happy to help you get things right - and as @SpecialEDy suggested get in touch with your Medtronic representative. I don’t use any automatic modes with the pumps I’ve used, but when I see my glucose level falling, I either use a temporary reduced basal rate of suspend my pump until I see my BG leveling off or beginning to rise. I started doing this following an event where I passed out [BG = 10 mg/dl, according to the Medics] late one evening when I should have been in bed.
Oops, I missed the part where you said that you didnt use the CGM. You’re 48 and you qualify for Medicaid? There might be others options in order to get you the sensors. With the CGM linked into the 670g, and everything set up right, you wont have to worry about going low because the pump will alert you and the pump will cut insulin delivery until you recover. Once again, reach out to Medtronic and ask about discounts or financial assistance. Next, you should talk to your doctor. Im not sure how different Medicaid is, but with regular insurance, the doctor can file an appeal saying that the CGM is medically necessary.
Look at it this way, the bottom-line way that insurance looks at it. The number of broken bones youve gotten, and other possible complications you could have, far exceed the cost of putting a CGM on you. They will save lots of money by getting you the CGM and preventing hospital visits.
I don’t have a CGM. Only the pump. My pump would truly work more effectively and efficiently for me if I had a sensor with it, but unfortunately medicaid here won’t cover the sensor. This was a problem for me the whole first 30 years before I had this pump. Basically I have been dealing with this my whole life, but I will say that since I got the pump, my episodes with unconsciousness due to low blood sugars have dropped more than in half.
I agree with you 100%, I just`wish that medicaid would too. I can’t say that I am ungrateful to have it, but it does limit options that are available. I guess I just do the best I can with what I have. In all true honesty this is the first time that I have gone to the ER for any of this stuff. It happens with me and knocks me down for a bit and I get up and move forward to the best of my ability. What is crazy is that this is
sorry I hit enter to early. This is the first time that I have broken a bone without having a seizure.
Kelly I have lots of drops, 3-5 a day! I don’t pass out, but I get very loopy and well, stuff just ain’t right in the world for me. But I know that if I pay attention, I can stop the lows to a certain extent, that is, but I would say this, maybe you’d be better off with CGM and pens rather than a pump. Just a question, maybe they will cover the CGM without the pump?
Just seems to me that you need to be more aware of your lows than the highs and well a CGM might do the trick for you.
Talk it over with Dr and see, most that can happen is that they say No.
Charlie
Hi Charles. I would be a million times better if I had a CGM, but I have done everything I can including my Endo. in everything and Medicaid is NOT going to cover the CGM. I would fall out two or three times as often without the pump, so I’m not willing to give it up, I do the best I can with what I have and that’s all I can do. I really thought that the low/unconscious episodes were more common in the Type1 community, but what I’ve learned is that it is not. I was able to make contact through TypeOneNation with another T1D who actually has a lot more problems than I do, but she has similar low/unconscious episodes like I do. I was so grateful to be able to connect with someone who deals with what I do. I am truly grateful for TypeOneNation. Thanks for your response.
Hi Kelly MDI is multiple dose injections such as a pen. I see you use the 670G without CGM. The best way i was told to get rid of my regular lows and to become hypo aware was to run high for about 3 months. I think people like ourselves aim too low and the body gets used to being low and doesn’t warn you. My DSN (in UK) said run high for a few months. This actually worked for me and i have hypo awareness back.
Hi Helen. The reason that I don’t feel my lows is because of nerve damage. I do still feel some of them, but I would say that for the larger majority of the 40 years I have had T1D, I have had this same problem. I WANT the CGM, but Colorado Medicaid, which is my insurance won’t cover it. I have done everything I can do and my Endo, has been included and I am just stuck without it. I do believe that if I had a CGM that I would never go unconscious from a low again. I have much fewer problems with the pump than I had without it, so giving the pump up is NOT an option. I will mention running high to my Endo. and see what she says. Thank you for some new information. It is something I have never heard before, but at this time I am truly learning a lot about T1D and it’s less common long term side effects. One thing I have definitely learned is that falling out/going unconscious is not common within the Type 1 community. Thank you for your response.
I hope you get some support. I haven’t had 670G long some things in auto I hate! it does run you higher anyway. tells you to take hypo remedy much earlier than I would normally. I still can go quite low in fact more lows than without CGM as it isn’t always same as BG. It lags a but particularly if you rise or fall fast. In Uk we have to pay for CGM separately but we are lucky as we don’t pay for pump. Good luck hope you get something sorted.
Hello! I hope the inclusion of the words, in a note to insurers written by your doc, would be “medical necessity.” That SHOULD carry some weight. Ongoing visits to the hospital or ER due to chronic lows, broken bones and whatever else carries astronomically higher costs than successful maintenance of T1.
It seems your doc SHOULD DEMAND a Continuous Glucose Monitor (CGM) as a medical necessity given your condition. Medtronic’s 670 has an accompanying sensor with one. Dexcom’s stand-along CGM (G4, G5, G6) has an alarm that alerts/sounds/vibrates for both highs and lows. It’s been a game changer for me - I’ve passed out from lows and have broken shoulders and more as a result. No more.
The Free Style Libre CGM however does NOT offer an alarm.
It strikes me that denying you this readily AVAILABLE medical device is both unconscionable, unethical and possibly illegal. Talk to a legislator. . . or a lawyer. And good luck.
Dear Kelly,
Having a CGM is the key. You might be able to get a Dexcom G4 for less money, either from Dexcom or get an online used one, assuming Dexcom will sell you the supplies. The Dexcom G4 and G5 transmitters both work on the same size sensor. If you put the transmitter on hypo alert and set your alert level at something like 85, the receiver will buzz loudly day or night. If at night, it will wake you up in time to drink orange juice or whatever is your go-to for fast action.
The other way to go as has been suggested is get help from Medtronic.
I’m wishing you every good luck,
Hi Kelly!! I’m sorry you’re experiencing these lows with such awful injuries as a result of passing out!!
I’m not sure what ur financial situation is but my brother in law uses the Freestyle Libre & pays out of pocket for it. The newer ones have alarms & u can use your smart phone, Android or Apple, to scan the sensor. He says that it’s a very reasonable cost because u only need 2 sensors a month & maybe one back up just Incase there’s a problem w one.
I’m not sure if u HAVE to buy the receiver or scanner. ( not sure what the thingy is called that u can use to scan the sensor besides your phone). If you don’t have to buy it, that is even better. But if you have to buy it, it’s only a one time fee.
Good luck!! I’m so glad your low episodes have decreased on your pump!! Keep us posted on how you’re making out!!
Hi Sandy. I don’t even own a cell phone because I live in a very rural area and have NO cell reception at home and because of pain I am usually at home. I am fighting for disability right now and have $0 coming in. My husband works, but pays all the bills by himself since I can’t work. Medicaid did not used to have co-pays more than $2, but I just got a doctors bill for $74.50.? It’s to the point that I can’t even afford medicaid. . . … … The medtronic sensor is exactly what I need. I got on TypeOneNation to try to find another T1D that deals with what I do as far as not feeling their lows. I DID find another T1D in California who has the same problem that I do and that is nerve damage that keeps us from feeling our lows. . . . . .My new friend said that she used to have a CGM and she never had problems while using it, but she is currently without for the same reason as me; Can’t afford. What I have learned is that the kind of nerve damage that we have is rare.
Hi Bill. I have done everything I know to do including my Endo in everything. To be quite honest, this is only the second time that I have sought out medical attention for something even related to T1D. The first time was my car accident in 1996 when I shattered my 2nd lumbar and this time since I fractured my wrist. All the other times I have either broken my nose (5X) or didn’t break any bones, just went physically unconscious from low with or without seizure, but I just don’t know why I need the doctor “after-the-fact”.
Since I have been fighting for disability and trying to have medical documentation for everything, I realize now how often these things happen to me. I got on TypeOneNation to find another T1D who suffers from the same kind of nerve damage that I have that keeps me from feeling lows and I did. She told me that when she had CGM. There were NO problems because of the warning that it gives, but she is currently without for the same reason as me. Can’t afford. I am struggling with medicaid, but know that I am not that I’m not the only one.