Constant jumps and lows/damage

Hello, I’m a female T1D for 8 years now (im 22) and have recently been feeling extremely overwhelmed. I don’t know anyone else with T1, so I don’t really have anyone to compare too. Despite my hardest, my blood sugar constantly fluctuates 100 points. For instance it was 80 to 200 today, then back to 180 in the span of an hour. This happens constantly. while I’m working on tighter control, I’m scared I have already done damage to my body/brain. I’m about to graduate college and fear about going to grad school, I no longer feel confident and feel like my intelligence/capabilities has gone significantly down since diagnosis, especially since I need to take the GRE. Does anyone experience these constant highs and lows? It doesn’t help that I’ve looked at research studies on the web stating how significant jumps and drops can damage the brain. Is anyone able to fully function in a relatively “difficult” jobs while having issues like this? I feel like I can barely sit and study anymore, and I’m always exhausted. Plus with my anxiety, my thoughts are constantly surrounded on my Dexcom.
Thank you so much for any responses!

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Hi @Madison3131 . I commend you on your desire to keep tight control and your concern about the swings in your numbers. I’m going to redirect your question to ask the reasons for the swings: if you can figure that out it can help you manage them.
You’re under stress in college and with next steps (kudos to you on your plans!): what do you do for stress management? That’s a rhetorical question so no need to go into details here, but if you don’t have one you should find one. For some people it’s yoga, others do deep breathing or take a walk - find what helps you best.
Have you been on the same insulin regimen for a while? It does need to be tweaked from time to time - not because you’re doing anything wrong but because our body’s needs change, and while those of our “not so sweet” friends adjust on their own, we have to do some work.
If you’re not doing it already keep a log of your insulin, carbs, exercise, etc. and work with your doctor to find patterns. It may be you need to change your carb ratio, or your basal insulin needs to be changed. Are you on a pump? If so you may need different settings for different times of day, and if on injections you might need to change the dose, timing or type. A pump may be the easiest way to manage extremes for many people, so if you’re not on one look into it.
I have been on insulin since 1963 - we had long acting animal insulins - I took one shot a day through college. As I recall this thing called multiple daily infections, or MDI, with short or fast acting ones to inject with meals - didn’t come into the picture until the early 1980s - at least that’s when I started. I’m still here and doing well.
I don’t mean to minimize your concerns, which are perfectly understandable and valid. But our bodies are thankfully resilient so I hope you’ll focus on determining the source so you can take control. Don’t expect perfection but that should help you feel better both physically and mentally.

@Madison3131 Hello Madison, and a warm welcome to the JDRF TypeOneNation Community Forum!

You are definitely NOT alone in what you are experiencing; during seven decades of trying to learn this diabetes management thing i experienced what you are now living with many times. Remember that the worldwide diabetes experts have set a standard BGL [Body Glucose Level] range os 70 to 190 mg/dl and suggest that a person with diabetes [PwD] should achieve this goal at least 70% of the time to avoid “complications”; your 80 - 200 would appear to me to be fine - I AM NOT a licensed medical practitioner. I suggest that you glance periodically at the AGP Graph on your Dexcom Clarity report page and pay particular attention to your TIR [Time-In-Range] and standard deviation - for me, the most important factors in diabetes management and evaluation.

My guess, is that your swings in BGL might be due to the glycemic content of your meals and a delay in the bolus insulin being able to immediately negate. May I suggest, that you try not to concern yourself with “following numbers” but rather use those numbers intelegently as “guideposts” in making adjustments in future insulin dosing - look more to the BIG picture rather than just a single day and observe trends. Remember you have “only” 8 years in this insulin thing so far, and you have another 80 or so to go.

Does your college have a diabetes group? Another place to find people living with diabetes near you is to use the “Resources” tab at the top of this page and click “JDRF Near You” and enter your zip code to find a JDRF Chapter. Feel free to ask questions here, and best wishes in achieving your dreams - the GRE. Make diabetes fit into your life and please do not allow diabetes to rule you or your ambitions.

hello @Madison3131 welcome to Type One Nation.

It is statistically impossible to achieve perfect control. Variations in stress, errors and misinformation on food labels, minor even insignificant changes in exercise (even climbing more stairs today versus yesterday) will lead to variations in blood glucose levels. Now lets look at out glorious tools! a finger prick meter is +/-15% but at least it measures whole blood. A CGM is 15-20% accurate and measuring interstitial fluid, making it lag reality sometimes significantly.

put these together. that’s how I come to the conclusion that perfect (70mg/dl - 99 mg/dl constantly under every circumstance) is impossible.

now I want to bend your brain. I was diagnosed in the late 1970’s. we didnt have blood sugar meters. I cant even tell you what my blood sugar was for years. for years.

OK so that was 40+ years ago. Now I have a pump and a cgm ad my a1c is never above 6.4% Can I give you a tiny bit of advice? sugar happens. if you go up to 399 after a mistake and fix it, you are not going to break. you will not become brain damaged. Believe me. my total accumulated time at above 250mg/dl would probably stagger most people. just as my total accumulated time below 60 mg/dl.

I am going to be bold here now. I am willing to bet your exhaustion and your inability to concentrate are due to your anxiety. Stress can get me very far off center, and it can make me preoccupied to a very bad point. To the actual point of errors and accidents in my life. See I did suffer from anxiety along the way and I thought I was losing my mind. I also had severe B12 deficiency too, but you can fix that in a month with vitamins.

With and during swinging blood sugars, I was able to achieve a professional degree and work in a very high tech industry. even with a less-than-perfect blood sugar control I have had all the success in my field that I have sought after.

I think it would be best to bring these concerns up with your endocrinologist because there is some funky things that can happen with adrenalin and livers and your anxiety could be clinical. Best to eliminate any physiological stuff as early as you can. I’ve been in therapy for years and it really helps with intrusive thoughts/anxiety/depression and similar issues of PTSD and trauma in general. I hope you find peace!

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Hi Madison,

Like the comments that Joe shared, I have been a TI for 53 years - long before blood testing kits, cgm’s or pump. Like you, my BS would (and sometimes, still does) fluctuate wildly. I always was, and still am, much more comfortable with higher BS than low. I can feel great from 95 to 180, while feeling low (stressed, mind in a fog, shaky) at anything below 80. With my pump and cgm, today, my A1C averages in the high 6’s - which I consider a minor miracle. It takes a lot of work, but by keeping on top of my BS with these tools, I can level it out a lot more quickly and get off the roller coaster.

Don’t worry so much about brain damage; which by way, I have always been told is caused by excessive LOW, not high, BS. But even that is about long time, untreated diabetes. That is not what you are describing to us.

Like Joe, I have achieved multiple graduate level degrees and spent my life working in a highly technical, creative profession. While the occasional low BS can be an annoyance, it has not kept me from my professional goals.

But the stress and exhaustion you are feeling is most likely caused by the horrible roller coaster you are on. Slow moving BS, in either direction, is easier on the body. Once it starts to zoom up and down - you feel lousy. Fast dropping BS even from 160 to 100 can feel much worse that slow dropping BS from 100 to 70.

Have you thought about trying a more protein/less carb type of diet? I am super sensitive to insulin - I only use about 15-20 total/day and about 1-3 units/meal. How many carbs I eat can really make a difference and zoom me up quickly. A higher protein diet seems to keep me more stable. I’m not talking extremes - I eat about 80-100 carbs/day (sometimes more…). If you have not tried this, see if it helps.

Good luck and take those GRE’s !

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I can relate to the stress and frustration. I have wondered at times why I seem to fluctuate so wildly and others seem to maintain tight control seemingly with ease. I’m pretty sharp, so I can’t figure it out. Lol I’ll just share what I have experienced and perhaps some of it may appeal to you.

First of all, no matter how hard I have tried, I have never been as steady and in range without a pump and in Auto mode. Are you using a pump or Dexcom CGM only? I use Medtronic 670 G and there are things about it that I find incredibly annoying, but it keeps me in great range around the clock most of the time. ( I’m considering switching to Tandem Control IQ.) I have accepted that it’s the best option for me.

I found an awesome Endo and CDE. There’s nothing like the help that can provide. That’s the foundation for me.

I became aware of a program called Taking Control Of Your Diabetes some years ago. It went virtual with covid, but will return to in person conferences soon. They have a website. It’s by two long term, T1 Endos. They have virtual conferences, videos, music, links, SOOO much! They make you feel like family and not so alone. I can’t say how valuable it is. I literally shed tears it’s so amazing. They recently had a Holiday conference and I think it’s still available to view. They have some on You tube too. Check out their original music videos. They write, play and sing songs from a T1 perspective. So relatable. Lol They are planing a live conference in CA in 2023!

Despite challenges, I’ve managed to work as a professional for years. I practice law and have engaged in litigation, depositions, high stress situations, etc, for many years, with T1. I also got my real estate license a few years ago and that was a bear. So, it is possible to focus and excel in your endeavors.

This site is a great source of support too? There are very caring and knowledgeable people around here.

Good luck with everything!

@Madison3131 Hi Madison! Welcome to the Community.

I am a new T1D - less than 2 years - but I got diagnosed at age 56 so my life & situation is very different from a lot of people on this board. They inspire me and help me know that I can live a healthy life with this disease.

I also feel a great deal of health anxiety with being a diabetic. For me, I have slowly come to realize, is due to all of the great technology. Having a CGM has prevented many lows for me. I recently went on a pump - which has made a world of difference. HOWEVER, all of this great technology can be overwhelming because I find myself constantly checking my CGM (I have it on my Apple Watch) to see what I am at and what my trend it. Seeing the fluctuations or trend changes can make me anxious - will I go low, why am I so high, what did I do that is causing that up arrow, etc. I finally had to realize that the technology that is helping me is also scaring me with all of the real time data. Now, I let my insulin do its trick and I spot check my numbers a few hours after I eat or when I think I may be heading lower than I like. I am not afraid of a highs (reasonable and not prolonged) as I am of lows. I set my alerts to reflect his.

You have a long and wonderful life ahead of you. You have accomplished so much and have a great (and realistic) game plan for your future. Let the technology work for you while you go about your life. Don’t let the technology rule your life. Also, I will echo what @joe says, therapy is a great help.

Stay strong - you’ve got this!

MF

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