I was dx’d T1 almost 2 years ago. I always really felt my lows because I would get sweaty, shaky, etc, etc… All of a sudden I’m not feeling them (90% of the time) anymore. Lately I test my bg and am shocked to see that it is 36, 42, or 55, etc.
This is scaring me. Have any of you had the same experience of feeling your lows after being dx’d and then after some amount of time/years not being able to feel them anymore?
Any and all comments would be most appreciated.
There are many reasons this can happen. I’ve you continuously get hypo’s your body can adjust to those hypo’s, and you don’t feel them anymore. It’s no different when someone get’s used to hypERglycemia. I now for myself, sometimes I’m just so focused on what I am doing, such as walking; by the time I realize that I am hypo, i’m already there. If this has been a consistent problem for you, have you ever considered a dexcom device?
-Yogi
For years I was able to feel lows. But ever since I’ve tightened control, or tried to, I have realized that unless my blood sugar is very much off (high for a long period of time), I don’t feel lows either.
That’s where the Dexcom (or any CGMS, really) comes in very, very handy. I’ve been told I’ll be able to feel lows again. Let’s see when.
It isn’t necessarily time passed since diagnosis that causes you to not feel lows, but more likely how often you get them. If you get lows very often you will develop hypo unawareness. But it can be reversed by reducing the frequency of lows and then you will be able to experience them again. There are some people on here who have not been able to reverse their hypo unawareness, but usually that is after a lot more years than you are talking about.
Yes, this is hypoglycemic unawareness and it can be very dangerous. Do you have a CGM? If not, you should definitely look into getting one. They are not perfect and will not alert you ALL the time to lows, but they help. However, if you want to get rid of the “unawareness” you have to stop having so many lows. Your body is accustomed to being low a lot, so it’s no longer giving you the warning signs that you’re dropping. Personally, I was able to get rid of my unawareness (inadvertantly) by running high for a couple of years. I don’t recommend doing it the way I was doing it (I was just experiencing D burnout), but I did get back the ability to feel my lows. Now I’m working on trying to balance tight control with not consistently going too low. It’s a lot of work, but so far I am still feeling lows, despite being back on the pump and getting my A1C down into the 8s.
My endo has actually told me that she would rather see me run a little higher in an effort to avoid developing hypo unawareness, which I do agree with. Hypo unawareness can be extremely dangerous when driving or even just out walking (I almost got hit by a car a few years ago when I went low while walking into the office in the morning).
It’s a tough, tough balancing act.
The sweaty shaky starving part can easily go away.
Currently the way I know things are dropping is by feeling dizzy and having my right hand go numb.
No joke.
right hand numb, check BG.
A CGMS would benefit someone like you!
I’ve only had the sweaty shaky part (never had the starving) one time and that is when I was coming up out of being unconscious and was bathed in sweat. I was 38 when I tested but obviously had been lower. Other than that I find the symptoms of a low are more subtle. We all have different symptoms or combinations of symptoms, but once you discover your own you will train yourself to recognize it. For me the one that jumps out at me is that I’m having trouble thinking straight. So when that happens I think, “aha, check your blood sugar”.
But again, if you have frequent lows you will lose this awareness and need to reduce the occurance of lows to get it back.
Yes, I can identify with that! I measure in mmols and hypo is 4, but I rarely feel it before 1.8 which is a bit of a bummer because by then I am so far gone that I am an automaton and sweating so hard that I look as though I have just come out of a shower.
Part of the problem is a low target. I have been having to run my sugars for the last few months quite a bit higher than would be the norm to try and get some feeling back. I can now feel if they are dropping fast (feeling hypo even above normal levels), and sometimes I can feel them at 3, though I still get rogue ones.
Another problem I found was that I am actually allergic to human insulins. It took four years of hypoing about 7 to 9 times a day before I could get put onto pork insulin and then it improved. I was having a hypo (unfelt) and sitting stuffing sweets into myself when this stranger came along, took one look at me and said that I was on human insulin. He then told me that people who are over sensitive or allergic to human insulins (nothing human about them except they are made by humans!) can hypo often and not have any awareness that it is happening until it is too late.
He put me in touch with an organisation - which is quite local to me - iddtinternational.org who campaign for patient choice. They are not against human insulins for those who can use it, but they campaign for the choice of using pork insulin if they are having problems. I read their welcome pack and felt as though I was reading my own story! It took a lot of effort to try and get onto pork insulin - being told that it does not exist - it does, that I might be allergic to it - well let me try for 6 months and if it turns out that I am then I will eat humble pie and go back to human insulin. The hospital where I went actually dropped me completely and I spent 18 months without any care or support. Eventually I was given pork insulin from another hospital and immediately noticed a difference - pork insulin is smoother in its actions and I am most definitely not allergic to it. I lost my hypo awareness because of the human insulins that I was on. It is all in the information pack from iddt.
This has been confirmed when I was forced onto human insulin again on a drip several times in hospital (I now refuse to have insulin by drip and insist that I do my own insulin regime unless I am unconscious. Iddt has produced a “hospital passport” in which you can write instructions on how you treat your diabetes when in hospital, when you want your snacks etc and the hospital is obliged to respect your wishes. I hope this helps.
Claudia’s advice is correct; the symptoms can and do change over time, and they may become far more subtle than you are used to, but they may never return to the symptoms you once knew. A good program called Blood Glucose Awareness Training (BGAT) developed at the University of Virginia addresses how to recognize these more subtle symptoms but only a few CDEs even teach it presently (though you can ask your CDE to offer it, if enough people ask, they might try to become trained in this). They have an online version of the program that has been tested, but is awaiting a launch.
Thank you everyone for your responses. I’m pretty sure I know what is going on now. Three weeks ago I found out my A1C had gone from 7.9 to 8.7. Before that my A1C had been going down, not up. So of course I got a big lecture from endo about getting tighter control, and I have been having a lot more lows as a result. So I think my body was indeed adjusting to those.
I did call my endo about suddenly not feeling my lows anymore before I turned to you guys for help, and he told me “sometimes that just happens after you’ve been a a T1 for a while.” and offered me no other explanation. So I am really grateful for your responses.
I am currently doing shots. I tried to go on the pump (Animus Ping) last October, and then again this January, but I went back to shots both times because I was having so much trouble adjusting to pump. I haven’t given up on my pump though, and plan to try again (and again?) until I finally “get it.” And so no, I have never tried a CGM.
After I read your responses yesterday afternoon, I let myself run at between 150 - 180 bg for the rest of the day. This morning I woke to a low of 59 and I felt it! But I still plan on working on tighter control, just not so drastically as I was.
Laura, what you said about your right hand going numb…wow! That has happened to me too! When I told my endo that last year he said I must have just “coincidentally” had a pinched nerve, and he didn’t think it had anything to do with D or going hypo.
Thanks to all for being so understanding about all my ignorance, there is so much to learn when suddenly getting d’xd T1, it’s been pretty overwhelming for me. Thank goodness for Tu D, or I’d really be lost! You guys are THE BEST!
Glad you got some good response, Gina. Not knowing things early on in your diagnosis is normal. On the other hand, being an endo and not having a clue isn’t so forgiveable! Your doctor doesn’t sound too responsive to your concerns. Saying things like “that just happens” and “it’s unrelated” (without checking further) is not particularly useful. And “lecturing you” about your rise in A1C (like it happened because you were a “bad girl”) is shaming and uncalled for. His job is to give you the tools to get that A1C down without lots of lows!
I’m glad you’re not giving up on the Pump. I started with my Ping in January and I found about the first 2 months stressful and a pretty large learning curve. But when I got past I love it. I had been on MDI’s for nearly 2 years when I got my pump so I felt comfortable with I:C ratios, sensitivity factors, carb counting, etc. If you don’t have those skills down I think it’s a lot to deal with at once. I also have to say I’m partly retired and live alone so I could really focus my attention on getting used to the pump without having to run out each morning or care for children, etc. If I was working I would consider starting a pump during a 2 week vacation period to adjust.
Gina, I want to add that if you keep yourself at 100 as your lowest BG AND take glucose tabs to bring yourself up each time you run below 100, you will very nicely get your awareness back within about 2 weeks. I’ve seen it over and over with D friends.
Take a half a glucose tablet when you are between meals and not having had any short acting insulin recently. See how far up it goes. If you know exactly how far up a half a glucose tab takes you, you can take exactly the right amount to put you at 100-110. No need to ride higher. But definitely stay at least there. You’ll see your symptoms return.
I am also hypo-unaware. I have autonomic neuropathy and my hypo-unawareness is caused by nerve damage so running my BS higher is not going to fix the problem – in fact, that will only make it worse.
I try to test as often as possible to help reduce the chances of getting caught off guard. Going lower carb has helped because I don’t have as much fast acting insulin floating around in me. I have a Dexcom (which has been a lifesaver) but I am having problems getting more sensors. The Dexcom helps alert me when my blood sugar starts dropping. Besides know that you are going low, you also know how fast you are dropping so you can adjust your treatment. Being 65 with a straight across arrow will get a different treatment than 65 with 2 arrows pointing down.
I became hypo unaware about 14 years into D (had my first convulsion on my honeymoon…gads, who does that!). But it passed after about two years. That was about 22 years ago. My lows feel different now. I don’t shake or sweat, I just suddenly feel very tired.
What can I say?? I’m surprised that you don’t feel symptoms of lows after only 2 years. I had uncountable lows as a Child and seizures plus highs and maintained symptoms of lows. When I had my symptoms, the extremely fast heartbeat used to scare the bejeebers out of me. So I can say I don’t experience them anymore nor do I miss them. Call me weird!
I test often to know what’s going on with my blood sugar and correct, eat and exercise appropriately. I drink fluids including my Good amount of water during the day, so that I will wake up during the night to go pee plus test my sugar level. I didn’t stop feeling symptoms til’ about 8 or so years ago about 40 yrs. after dxd. But we all have different experiences, don’t we? Best to you!
All of your responses are so informative and usefull. I have read them all many times, and will keep for future reference. I’m not feeling scared anymore. I feel “in control” again, even if my D may try to dissagree (LOL). Thank you everyone!
Hey Gina,
Make sure you let people around you know what to do if you start to not make sense so they can help watch. Don’t drive unless you test first. Also, if you have insurance, your health insurance may cover a continuous glucose monitor because of hypoglycemia unawareness. Mine would, but I don’t have hypo unawareness, so I am out of luck and have to pay for the cgms out of pocket. I got the cgms because I had 3 seizures in less than 2 months from low blood sugars during the night. Usually from exercize or long walk before I went to bed. Seizures are very bad for the brain. = )
Leo is totally right. You have to keep your bg above at least 80 for 2 weeks. That means staying above 80 for 2 weeks straight. I suggest you read “Think Like a Pancreas” about this issue. Gary Scheiner changed my life a couple of years ago when I read this book. He taught me so much. I didn’t realize how uneducated my docs and I were. If you make yoruself stay above 80, you will want to cut back on your carbs (like no more than 45 at any meal) or eat in stages so the insulin can keep up wiht your blood sugar rise from eating. That will flatten out the bg’s.
One other thing - I have been type 1 for 28 years. Sometimes I feel lows and sometimes I don’t. If I don’t feel a low, then I start to feel it when my bg is up to 80m or 100. Symptoms seem to be different if I gradually drop down versus dropping quickly. Symptoms also seem to be different sometimes than others.
Yep, but took me until about 3 years ago when i first started having lows and minimal symptoms. I have had it 33 years. I got the DEX and feel much better about sleeping through the night. The lows at night-time scare me the most. I think insurance companies should have to cover pumps, CGMS and all testing supplies. Mine only covers 80% and I am capped on durable at $1000/yr…basically I pay for all these extras to prevent admission to the hospital. I can’t imagine not have the safety of the CGMS anymore.
Yes, this has also happened to me… I’ve been diabetic for 33 years, since1978, when I was 12.I think no longer feeling them may be a result of nerve damage, but I’m not sure. I’ve been on a Lantus regimine, so my control is pretty tight and I catch most of my lows, since I’ve noticed they seem to occur pretty nearly every 6 hours. The one that really got me though, was one that I had in my sleep. My brother saw that I did’nt look right and called paramedics, thankfully, but as a result I sustained a little brain damage and am having trouble remembering things now. 43 years old and I feel like an Alzheimer’s patient. Sigh…
Hi Eric. Since your lows occur every six hours, I wonder if it’s possible to pin down the cause of them. For instance, if your Lantus is peaking at those times, maybe a switch to Levemir would help, since Levemir has a lesser peak. Anyhow, knowing why you are going low on such a regular basis could possibly help to stop the lows from happening.