Hello, My name is Kevin, I have been T1 Diabetic since 2005. I have had some troubles getting my BS under control, including highs, and lows. Until recently I did keep up with my diabetes and had it under control. But for the last 2 yrs my BS levels have been sky high. I have been hospitalized 2 times in 2 years for DKA, dehydration, and just being sick from high sugars. First and foremost I want everyone to know I do care about my diabetes and I would love to improve, but there are complications for me and I just can't grasp it. When i was first diagnosed with diabetes in 2005, my BS was always between 90-120, i had occasional lows but nothing to serious. Until one day when I was working my BS went to 33 with no symptoms whatsoever! Fortunately, I had caught it with just a routine BS check. That 1 time made me so nervous after that I had deliberately let me BS levels go high, thinking it was better for me. Now I am 22 years old and I still have the same problems, I am a very nervous person so I am constantly checking my sugar to make sure it is not going low. Now I am taking the right amount of insulin and my sugars still run kind of high. I signed up for this site to help other as much I can and also get advice from people my age that are going through the same thing as I am. Please respond if you have any advice for dealing with lows, or help with the road to recovery for me. Thanks
I have a story kinda similar to yours, only not as serious. I have been diabetic for a year now and about three months ago i was at my grandpas house, and still being new to things i was worried about being high, so i took alittle extra insulin for a couple cookies. About an hour later i was to week to pick up a cookie i was so low, i checked it and it was 30, sadly after getting back up i checked the number and realized it was programed wrong, so i dont know what i was... (i'm pretty sure it was lower then 30) I then started taking little to no isulin during meals because i was so scared of passing out. My blood sugars averaged 250. Now i get to 90 and i feel lower then crap... so latly i've been taking extra insulin to get lower to get the feeling back and everything and i'm past my fear... i dont think this helped you at all but at least u know ur not alone!
Your story was helpful just for the fact that I know its not only me that goes through that. I also have had numbers around 100 and felt like it was 25! I rarely purposely take extra insulin to test lows because I am too nervous I wont catch it in time again. My BS levels range from 300-400 right now with a low about twice a month. I am in a bad spot and need much advice on best ways to deal with lows. Thanks again
Hi Kevin! If you are really nervous about having a low just make sure to ALWAYS carry some glucose tabs or some form of fast acting sugar with you along with your meter, and check your blood sugar if you feel weird at all. Also if you are really nervous, I think if you check your blood sugar every hour you should be able to catch any lows before they get too bad! I think it is a lot worse for you to always have your blood sugar running so far than it is to have a couple lows every now and then. Just remember that it is the highs that cause complications later in life, so hopefully this will help you calm your fears just a little bit and gain back your control!
Have you talked to your endo about this? I know it may feel embarrassing, but hopefully s/he can help put your fears in perspective.
Unlike you, I get very anxious when I get high, worrying I'm on my way to blindness from the ONE event. I think anxiety is very common in people w/ T1 -- it's not an easy disease to deal with! But, I have certain routine things I say to myself to remind myself not to freak out (One time doesn't matter, you'll get it down quickly, your a1c is still good, etc). It helps.
I'd try slowly getting your sugars down or you'll feel awful and low if you're suddenly in the normal range. It will be worth it when you feel better! Good luck!
P.S. I've had T1 since 1981, and I haven't been in the hospital / passed out from a low since 1983, which was before the good monitoring we have now. Hopefully that helps!
Hey Kevin, you`re definitely not the only one out there! i think a lot of us have been in your situation before, and i think its great that you`re acknowledging it so that you can fix it! ....I`m not sure if you already do this or not, but do you log your insulin and your BG`s?? It might help you find patterns so when you see high's on paper you might be more inclined to fix them. Also, if you start to see patterns when you go high and low you'll be able to make more consistent adjustments to stabilize your BG's...good luck :)
i know what it feels like ta be scared about going low. ive had type 1 diabetes sense 1996 i was 3 when i was diagnosed, and im now 16. ive been hospitalized many times due to low blood sugars. i used to have very good control over my diabetes too, and just like you once i got older and realized what happens when i go low i was afraid of going low. i started keeping ma blood sugars high, and still to this day do, though im trying to get them back to normal. ive had type 1 diabetes for 13 years and still get more paranoid over lows then highs ones. ive had a seizure from as low as 5 to 52, so i really get scared of going low. which is hard seince my doctor wants me around 80-110. i used ta think of it as :: either i go low pass out and have a seizure, or i go high and just dont feel good, and maybee have to go to tha hospital for fluids. but ive been trying to get back on track for a while, because really as ive always know, any off blood sugars begin to attack your organs, i just never thought about it as much as i did the fact that i could have a seizure from lows. so im right there with you, you are not alone in your battle to try and get back on track ive been trying too. so i just wanted you ta know that youre not alone.
One option might be to talk to your doctor about going on a Continual Glucose Monitor- mine has completely changed my life. The best is that most of the time i dont even have any severe lows because it alarms when it is going down fast or when it is below a certain number. I used to always be anxious about my sugars- but i know exactly what they are every minute of every day now- which frees me up to worry about everything else in life :)
If you haven't yet. pick up Think like a pancreas: A practical guide to managing diabetes with insulin. It is a real practical guide to diabetes and using insulin to manage T1D.
It is written by a T1D and is real world.
Do everything in small steps.
What kind of MDI regimen (insulins, timing, etc.) or pump are you using?
Vered - thank you I am finally getting used to checking my BS constantly, but when I'm busy at work or sleeping is what I'm afraid about, or just not catching it in time. In my 5 years of diabetes my experiences of going low have always been very quick and not many symptoms. What are some good foods or beverages to carry with me instead of juice? Also, yes I can already feel some of the complications from being high for so long.
Travis - I take Humalog rapid acting with every meal, and Lantus 24 hr insulin. Once a day
Sarah - As of today I am between Diabetes docs and my last Dr was not very helpful with my anxiety problems. Also it is very inspiring to know you can go that long with no severe lows.
Virginia - I do currently log my BS levels, and I have since I got diagnosed. My problem and fear is of my sugar going low without me knowing it or not feeling it.
Jessarae - It helps a lot to have someone to talk to that has experienced all the alarming lows. As bad as it sounds, my BS has been high for so long I don't even feel tired or dehydrated when my sugar is high. I hate it but i feel a lot more comfortable when my sugar is 400 over when it is 120. It does help to have someone going through it right now.
Tina - That is a good idea, I'm in NY and my doctors have not even asked me about using that. I would like to try it out, any risks?
sjwprod - Thanks for the advice! I just ordered the book offline and hopefully reading it will help. I am worried that doing everything in small steps will take too long and I will be suffering from complications before I get any better. As for my medications I currently take Humalog and Lantus in syringes. I have had the pump but I could not live my everyday life when I had it in.
It is my experience (24 years old, T1D for 11 years now) that endocrinologists are not the answer to diabetes-related anxiety and/or depression.
Diabetics, especially at our age, are more likely to suffer from depression and anxiety. On and off for ten years now i have struggled with anxiety about going dangerously low. And this has gotten so bad at times that i cannot even go to sleep for fear of not waking up...As a young adult in the real world on my own, i worry about slipping too low and having no one around that understands how to help me. Of course we can handle a low on our own, but what if it slips so low that we really cannot take care of it alone? and what if there is no one around to help us when we really need it? these are the things i worry about. Constantly.
Back to my point. Anxiety and depression have similar symptoms to lows and highs. and by this i mean, it is difficult to determine if you are anxious because your blood sugar is high all the time or if your blood sugar is high all the time because you are anxious. Do you follow? its kind of like a "what came first" sort of situation...and mental/behavior health care professionals (in my humble opinion) are absolutely helpful. Stress and anxiety leads to high blood sugar for some people (like myself) so your worry about your blood sugar could absolutely be a caontributing factor to poor control.
I am from the Boston, MA area, and I am a patient at the Joslin clinic. That is the nation's foremost in diabetes care - and still, my endo cannot give me answers about anxiety and depression as it relates to my diabetes. My doctor seems to see things in black and white. my A1C is such and such, which means i am not taking care of myself, which means i am a bad patient, which means i need to do x, y, and z to fix it. For this reason, Joslin has a whole unit devoted to behavioral and mental health to deal with the burden that is our disease.
So, to make a long story even longer. I can relate to your situation. Very much so. I recommend looking up a specialist in your area. There are psychologists and therapists that specialize in diabetes. I mean, this is not just about insulin and blood sugar and exercise. It affects and interferes with EVERY part of our lives at one point or another, and it helps to have a professional to help us sort out all of it and understand where we are coming from.
I completely agree with everything smachado31 said- a psychologist/ therapist who specializes in diabetes will be the most helpful person when it comes to the depression and anxiety related to diabetes.
About the CGM- there arnt any risks that i know of however there are some negatives
1) its not always completely accurate but you still do blood sugar checks anyway so it is still extremely helpful
2) you can get some skin irritation at insertion sites
3) depending on your insurance it might be difficult to cover it- it took me multiple strongly worded letters to get mine covered but if you explain that you are high all of the time because you are anxious about lows and that the CGM will eliminate that anxiety they should support you
4) You might not be able to go on it until you get your BGs down- but you would have to talk with your endo about that
But for me any negatives/ issues attributed the the CGM are far outweighed by all of the benefits!
Kevin, I think that getting a CGM would really relieve the anxiety you are having while you sleep or work..it could make a world of difference for you! You could carry around a tube of glucose tabs its probably the most convenient, fruit snacks work well too, and fun sized skittles or pixie sticks. I hope you are able to get over your fears =)
You are definitely not alone! It can be really scary to have those low episodes, especially knowing that it only takes one really low one to end your life. But you have to balance it with what you know about the long-term effects of high BG's.
I think the BIGGEST piece of advice that I can offer you is to try and find an endo that is a good fit for you and will help you work on the issues of your diabetes that are most important to you. That has made all the difference for me. Not all endo's are created equal, some like to focus on different aspects of the disease, and some are just a bad personality fit for you - even if they're great with other patients. Can you call your general practioner's office and get a recommendation for a few different endos and then try them out? It can be embarrassing to meet a new dr and to come clean with the issues you're dealing with, but the one that's right for you will listen, be empathetic, and will help come up with a long-term plan for getting you on the right track.
I'm much older than you, but certainly understand your feelings. My nephew experiences much of what you do. Your feelings are more than just about diabetes and you're doing the right thing in seeking whatever help you can garner.
I'll second a couple of the comments I've read here from other folks. First, seek help wherever you can even if it's just talking about your situation with a close friend. Better yet, try and find a friend close to your age who has diabetes and can provide their own experiences. Even reading the posts in this and other forums will help relieve some of your anxieties. I also do advocate seeking professional help regarding your anxietes, but that is not always easy to do. But be assured help is out there. My nephew who is 24 now works with a therapist who specializes in working with diabetics that I found for him, but I say he's lucky to have that for there are many who do not for more reasons than just the cost.
Second, I do highly recommend getting a CGM if you can as a few others have stated. I'm new to using a CGM ( 5 months), but it has literally changed my life. A CGM is not perfect, but it can provide a level of comfort you cannot get in other ways. Mine is 95% accurate, but that other 5% it's off is the most important part. I've learned the hard way not to take its readings literally. Now, I never react to what it says without first chekcing my BG with a meter. And I'll add that even a meter can be way off. This morning for me was a perfect example. I checked my BG with my meter to calibrate with my CGM which said my BG was 179. The meter read 284! A second and third finger prick and test confirmed that it was really about 188. I love that it tells me whether or not my BG level is going up aor down and how fast it's chamging. that alone relieves anxieties. The CGM has certainly relieved most of my anxieties about lows and highs. My experiences with lows have been so frequent and expensive within the last 18 months, I literally borrowed the funds to buy one and have paid the price to maintain its use. I feel fortunate to have had the ability to do that. My cost was high, but well below the emergency medical bills with which I've had to contend. Fortunately, as many are finding many major insurace carriers now will approve and cover a major portion of a CGM's cost. Mine is now coverng a large portion of the cost of the sensors I have to purchase.
i hope what i'm saying proves of some help to you.
Small steps and short goals can get you there faster than you think and you won't be overwhelmed by the challenge and all the stuff that the T1D experience has to offer.
When I get off track I always go back to focusing on the small steps and short goal, and before I know it I'm back on track the the next challenge.
Keep the faith, you are starting over and you have your whole life to enjoy once you can feel that you have this T1D stuff under your control rather than it controlling you.
When I was first diagnosed, my biggest fear was going hi. I did not want to live with any complications. News media and comments from people scared me of the high's. So I tended to trend low. I was very careful with what I ate and did my best, but soon my lows were sneaking up on me. I always managed to keep my life sorted out but the low's hit me hard from time to time. So I switched to using a pump and CGM, which put me into a better routine. Plus I was more aware of things that I needed to be.
For your constant high's though, when you were with your last doctor did he/she ever tweak your lantus or insulin to carb ratio. I mean once you get that set, things could go easier, not to mention you can focus more on the carb counting, which would keep your numbers lower and more in check with what you need them to be. Low's are inevitable they will happen at some point. If you are careful and count what you eat and sort things out with your doctor with everything else, your fears will be able to decrease. I am still scared of low's while driving, but I know if I am doing everything right, the chances of any low happening is minimal.
Good luck, welcome, and if you ever have any questions don't hesitate to ask.
My advice to you is to get on a pump and a CGM. The pump will help stabilize you and the CGM will give you a warning if you are going high or low. You have a LONG life ahead of you and with the proper tools it can be a long and healthy life. I just had my first A1C since going on the CGM and it was 6.5. This was after years of having my numbers bounce all over the place. It will give you better control as well as help with your anxiety, something I suffer from as well.