Fear of hypoglycemia

Type 1 and LADA
1

Hello!

This is my first post here, so I'm not sure if I'm breaking any of the etiquette rules or anything ;)

I've been a T1D for 14 years, and for a long time I was in a state of denial about my health. I pretty much just did the bare minimum to stay alive through my college years a few thereafter. Anyways, the past few months I've decided to regain control of my life and my diabetes. That being said, I'm experiencing lows once again since I'm managing my levels and insulin intake far better now but am still working out the kinks.

My question is: I have a (somewhat) irrational fear of lows. The panic that sets in during one is unbearable for me (and everyone else I'm sure), but it creates such fear in me, that I intentionally run high so that I don't experience them, which has already caused long-term complications in my body from this strategy. I live alone, and the only person that is involved in my life in any way is my boss (cause I work for him), so if something were to happen to me, it'd be several days before I was found (since he works part-time), and I fear it'd be too late by that point. How do I get over my fear of lows?

2

The first thing you need to do is get a CGM.

The best one is Dexcom.

3

First, good for you for taking the right steps to get back on track with things. I can assure you that you're not the only one who has done the things you describe (neglecting your T1D, running high to avoid lows, etc). Many of us are guilty of those things.

It's also not unusual to have a fear (even an irrational one) of lows. They are scary! And that fear is (I think) your body's way of trying to protect you in some way.

First question - is it possible to go on the pump? For me, the lows when I pump are far less severe and easier to identify and correct. I don't know if it's the same for others, but that's how it has been for me. This has made me feel safer and ultimately stopped my bad habit of letting my BG run high.

Second question - can you get a CGM? I know a lot of folks say that they feel so much safer using a CGM because it can alert them to an impending low. For you, a CGM might just give you the peace of mind you need living alone.

Third question - do you have hypo unawareness (where you can't feel the symptoms of a hypo coming on)? It sounds like you don't because you describe the fear kicking in when you start to go low. This is a good thing!! It's your body's way of telling you to get off your butt and do something about your dropping blood sugar. Because of that, it's highly unlikely that you will go unconscious from a low.

Keep in mind that for many people, a severe low that results in them being unconscious will result in their liver kicking in with a glucose dump, thus bringing them back to consciousness enough to treat.

I still have a fear of lows, but it's a healthy fear I think, one that generally drives me to test frequently and always carry fast-acting glucose. I do sometimes allow my BG to run a bit higher, but only in situations where doing so is for my safety (i.e., rock climbing, backpacking, etc). But to get to this point, I did have to go through an adjustment phase after years of letting my BG run high. It took about 6 months to get back to an A1C in the upper 7s. Again, for me, the pump really helped.

Also, keep in mind that as you bring your BGs back into normal range, you're going to feel low when you're not.

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4

Jack - Been there, done that! Yup I was the same in my 20s didn't really test that much and would have some crazy lows. Ok so first off the panic - make sure you always have something with you. I have always been able to tell they are coming on. My symptoms - which might be different from yours - were first hunger, then dizzy, not thinking clearly, feeling sleepy or weak. Anyway once you know the first symptom you can treat it before it goes too far.
BUT the better way is to not even get to the first symtom - to test and catch it before it happens is the best way to combat it. PLUS then you won't get the low and that fear will go away.
I lived alone for a bit when I was in my 20s, I get that if something happens no one will know for a while. The way to combat that is 1. get a roommate, 2. get a diabetic dog that senses when you are low, 3. have a friend or family member call you every 3 days to check in.
As for your fear of lows you need to know that under 4mmol is a low - living between 7-4mmol is ideal and you should not be constantly high just because you don't want to have a low. They will happen but if you test you can catch them early. I test 6 to 10 times a day. I test if I'm tired, hungry, have a head ache, don't feel right, and before every meal. Test and you will know if you are getting low. It's the only answer. Even if you have a CGM (Continuous Glucose Monitoring) I think that's what it means - you still need to know what is going on with your blood sugars. Lows are scary for sure but you can treat them early and not get low. :)

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Yeah, I've been looking a lot into a CGMS. I know the numbers aren't as accurate as a standard glucose meter, and are used primarily for trends and not exact numbers, but the accuracy of the CGMS has been a point of contention for me. I've never seen a side-by-side test of a CGM vs. a standard meter to see how off there numbers were in person, but I've seen a few forms with standard meters showing 55 mg/l and the CGM displaying 101 mg/l, which scares me more than a little. hah.

6

I've been looking more and more into a pump. The last time I looked was when I was a child, and they didn't appeal to me then, but I'm more responsible now, so I think I would benefit greatly from one. I'm just really self-conscious, so I don't know how I'd feel about wearing one all the time :/

CGMs look great, but accuracy is a little off-putting for me anyways. I've got an appointment with the 1st endo I've seen in 6 years next week, so I'm kinda nervous about it all, but I'm gonna ask him!

Yes, I have pretty serious hypo unawareness (isn't any serious though?). I rode my bike for miles 2 days ago and felt fine, and checked my blood when I got back just out of curiosity and came back at 48 mg/l! I felt completely fine too. That's kinda what prompted me to post this, because I've been really unsellted since that happened to me.

7

I've had roommates in the past, but I started devleoping extreme social anxiety during my college years and it has gotten worse ever year since, and my ability to seek out a roommate or have anyone close to me has greatly decreased. The only person I ever talk to or see is my employer, who is great, but he obviously has enough on his plate.

I've thought about getting a a dog. For selfish reason though (just cause I want one), but the cost of them put a halt to that real quick (insurance will not cover it). Maybe I should just start saving up :)

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Hi Jack, I would encourage you to give a cgm a try. If you don't go into it expecting to fingerstick test any less, you may find it really helpful for avoiding lows. It will also let you know which foods really spike you.

I've used a Dexcom since September and went from having lows almost daily to almost totally eliminating them mainly because I can see on the Dexcom when I'm trending down. That's my clue to test more and keep a close eye on it. Then I can bump it up a bit when I'm 80 instead of getting caught off guard at 50.

I'm also hypo unaware for the most part and my Dex has saved me several times at night when sleeping. It's peace of mind for me.

9

I am curious as to what you call "intentionally running high?" What numbers?

I am deathly afraid of hypos myself. I basically just stopped taking my fast acting because of it, and ended up gaining a lot of weight. (Around 30 lbs in 1 year!)

Now, I am slowly getting over my fear, and trying to keep the control as tight as possible. I don't fall in the high or low carb camp - both have not really worked for me. What I do is try and keep the meals I eat as a mainline so I can use the right amount of insulin.

I was recently put on Metformin to combat my insulin resistance (I am a LADA - but managed to muck up my IR over the last year..) That's one thing to look into - as it also curbs appetite - if you can stand the original side effects.

Once you have what you eat for breakfast/lunch/dinner standardized at first, you then can start to play a bit ewith the foods, adding in what you want and testing with the meter.

The reason I say this (and sorry if it seems like a lesson you don't need - I KNOW you've done this for 14 years already...) is because once you can prove to yourself that you are "okay" at the baseline foods - not going low, or even in a "normal" range, then you can gain the confidence to experiment a bit.

If you are all over the place with your injections, there is more room for error, and more room for highs/lows. (Especially when you are trying to figure what pizza+cake+salad would be for a bolus verses the night before when you had hamburger+salad+soup)

I actually went on the diabetic exchange diet to get back to a baseline. Once I get my stuff under control (and get over my fear of hypos,) then I will start experimenting with low carb again.

I hope my rambling has made a little bit of sense for you...

10

ALWAYS be afraid of this. It is a survival mechnanism. But do not let it control you or it will be too much.. CGM is a great start...

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11

I am completely opposite of your fear, I may have smidge of fear in the back of my head but only when I am out of my routine (camping, traveling, staying with family overnight). I have had some pretty bad lows, and I am suprised I haven't passed out because of them but I always tell myself to stay calm even in those situations. The times I have felt like I was going to pass out were times I was already sick and having a very low BG, both times I sat down on the ground for a moment (luckily I was in front of a fridge both times) calmed myself down and I was able to help myself but both of those instances were rare occurences, I have had D for 20 years. I also always have glucose on my person and in my car. I think if you have those back up measures, it allows you to stay calmer.

I agree that having a pump and CGM also adds to the piece of mind that you are searching for. At least the CGM is something you can start right away if you are not certain you would like a pump. Good luck!

12

Well, there are several Steps you Have to do and do them consistantly..
1. Test alot more Often..I normally ave 10x a day..
2. Novalog last about 3-4 hrs, but If your Too Low by hour #2 ( Like 130's) odds are your going to be Hypo by Hr #3.. Thus? Gots to Test 2 hrs after eating.
3. Testing Overnite- Yes, if you take your Basal at Bedtime and/or a CB for being High? Have to Set the alarm for 3 hrs and roll over and test. and of course having Glucose tabs or Those Mini Musketeers Bars ready to go.. And Knowing How mayn Carbs you need as well, Like 5 carbs drivers my BG's up about 25 points a Mini Musketeer Bar is 10 carbs = 50 pts..

4. Before doing ANY Physical Activity? Gots to have 150 and taking 5 carbs every 15 min. and of course, testing every 1/2 hr ..

5. Knowing what BG level you need to have B4 Going to bed so your basal won't drive you Hypo.. I have to have 120, if I am 90? I eat 5 carbs..

This and many other Tricks of the Trade and steps are discussed in the Book
THINK LIKE A PANCREASE
And if looking into a Pump? Might as well get John Walsh's -USING INSULIN>

and you can be 1 unit too much when eating and ? Bingo! Hypo..
Thus why So important to Know How many Carbs your Eating
And What your I:CR is to treat those carbs..
and based upon having a 100 BG at the time.

And guess what? Odds are? You were never taught this stuff, like so many of us others.. so it's Not your fault.. I blame the Medical Profession..

Hope that Helps..!

13

Experience is an EVIL teacher.

The problem with "tight" control is by definition it causes lows... the DCCT was painfully clear on that fact as well. Rarely mentioned, or even acknowledged by most white coats... and was blatantly and quite bluntly stated in the report itself.

Stop "fearing" them, and I offer we risk walking into the "tigers cage" and start slapping the tiger around (sic. stupidly). Not a bright idea, right? Zero wrong with your approach. Respecting lows is wisdom... if our fear stops us from living the life we wish to live, then action is required.

How high are we talking as being your "normal cruising altitude"?

14

Hello Dennis:

With respect, When is too much testing I ask...? The March 16-17, 2010 FDA meeting in Gatherberg MD was painfully blunt and clear... the meters are just not that blessed accurate... the industry is in no hurry to fix it either.

Consider until relatively recently there was no home blood testing, it did not exist period! Are we truly, honestly better off even being concerned about middle of the night data?

I have serious concern the generic approach being used causes more problems than it solves...

15

Jack, I can so relate to your living situation. I also live alone (not even a pet) and I'm not working so the only person who expects to see me each week is my guitar teacher, and I go to him. I used to have friends over all the time, but after an assault and some other incidents, I've become socially phobic (although I've been working on doing better and may have a regular visitor here soon to work on guitar duets with me.)

Social anxiety and the fear of lows all go back to the same thing, oddly enough: those darn fight-or-flight hormones. When we go too low or drop too fast, our bodies dump out adrenal hormones -- the same hormones our bodies dump out when we are being chased by a bear or a tiger. The good thing is that these adrenal hormones cause our liver to dump out glucose which raises our blood sugar. The bad thing is that they also make us feel super anxious -- and "starving" -- for some time afterwards, until we metabolize them.

I'm not an expert, but based on my personal experience, I think this becomes one of those negative feedback loops. We start off by dumping fight-or-flight hormones because of a low, but then we start fearing normal meter readings as being "too close" to low (because in our minds we come to associate lower BG's with that terrible fight-or-flight feeling.)

I think it's a kind of post-traumatic stress (PTSD) reaction to the lows -- a fear of the fear, if you will -- where our brains give us this strong message to do ANYTHING to avoid another low in the future.

I know from my work with a PTSD counselor (after an assault two years ago) that with post-traumatic stress, a good way to get better is something called progressive desensitization or systematic desensitization, where one faces a bit of the fear in controlled situations until one is able to tolerate things that remind us of the trauma without freaking out again.

The way that systematic desensitization works in the blood glucose realm is slowly working your way back down to tolerating normal BG's until you can tolerate maintaining a normal-ish average blood glucose without experiencing terror. If you've been correcting to (for example) 180, try 170 for a while, then when you can do that without fear, try 160. Then after that's tolerable, try 150, and so on. I'm still working my way down, but I'm getting much better. I was at 106 tonight before dinner and I was OK with it, I felt a little shaky/fearful but I didn't freak out. I hope to be able to tolerate readings in the high 90's without fear...then I'll hold steady there.

16

Having known a dear friend who was going blind back in the 1970's at the ripe old age of eighteen due to diabetic retinopathy, I'd say that YES we do need frequent testing with our meters and CGM's, even if they are not perfectly accurate. Knowing that you're 140 vs. 340 vs. 40 is a huge boon, in my opinion. People have much better control now than they did then. Middle-of-the-night testing is the difference between rolling over and ignoring a 54 or a 254 and treating it. In my opinion, anything that gets us closer to knowing what's going on is a boon to us (knowing how it's trending is even better!)

Of course I won't be satisfied till we can cure diabetes -- and in the meantime I really, really, REALLY want a perfectly accurate, non-invasive way to measure my BG's -- but the technology we have is so much better than even one generation ago.

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17

Maybe if you just got a gentle, attentive dog from the animal shelter, she would reassure you on a deep, primal level? I find dogs very comforting, especially a dog you know and love well. When I had my doggie, Rosa, if I was sad or worried, she'd come over and put her head on my knee and look up into my eyes with this very adorable concerned nurse look on her face. It was like she could speak and was saying, "Hey now, are you OK?"

I think even a dog who is not a trained diabetes assistant dog might be able to signal us when our diabetes needs attention just because they're so tuned in to us and ready to give us a woof, a knee-pawing, a whine or a very concerned once-over when we're not well or something is just not right.

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Good to see you back, Stu. I generally do not check in the middle of the night unless my body wakes me. Usually it does, if I am too low or too high. I check and the body feelings are almost always right. Of course I do a 3 am check when doing an overnight basal reset, but I do not regularly get up to check. I can understnd those that do it if they have frequent overnight lows.. it makes sense to. I agree with JeanV, on that one, we have many more ways to check and we can avail ourselves oto them, so much more than when I was diagnosed at 14 "Back in the Day". However,Everyone's diabetes is different.

God Bless,
Brunetta

19

What a wonderful thoughtful explanation , JeanV.. YOU are a winner , and I hope that Jack can use this info.

God Bless,
Brunetta

20

Jack, I think perhaps you need to look at your anxiety as well as your diabetes. Have you tried to receive help on this issue? I get that some people don't like to have lots of people in their life but you need at least a friend or two - not just your employer. I think this issues needs to take precedence. Yes a pet is lovely but they can be expensive. I'm glad that you came on here to ask questions and I hope you aren't offended by my concern and suggestions. If something is getting worse over time it's only going to continue. I think you need to get some help on that issue. Please do. Hugs!