r/Type1Diabetes

I've been limiting my hiking trips to less than 2 weeks at a time because after the first few days my liver is releasing glucose and making it impossible to eat and not run sky high. After a while I get tired of eating nothing but tuna packets and so I go home, gain some weight, and eventually return to the trail.

Limiting my time on trail is taking too long to complete the long trails on my bucket list. I'm now faced with a situation where I'm running out of healthy time where I will be able to continue my endeavors, so I need to be able to stay on trail for months at a time if I am to finish the bucket list trails.

Any thru-hiker T1s or other ultra athletes out there who have successfully dealt with this? Any advice would be greatly appreciated, as I've been dealing with this for years and need to step up my mileage ASAP without starving to death in the process. Thanks!

I just have one thing to say and it’s a little bit of a long one, but pls let me know if i’m insensitive or if maybe you also can relate ! 😗

I genuinely hate hearing this. It’s something I heard when I was diagnosed, something doctors say, and something I constantly see in diabetes ads and on social media. And while technically, yes, I can eat whatever I want, I wish people would stop pretending it’s that simple. Because my life DID change. Before diabetes, I ate without thinking twice. I didn’t have to stare at a plate and calculate how many carbs were in it. I didn’t have to think about how much insulin I needed, when I should take it, whether I was going to spike two hours later, or whether that same insulin was going to send me crashing afterward.

Food was just food.

Now sometimes eating something I want means watching my blood sugar shoot up, giving a correction, watching it refuse to come down, giving more insulin, and then suddenly fighting a low because now there’s too much insulin in my body.

And somehow we reduce all of that to “just take insulin.”

My blood sugars were all over the place until I completely changed the way I ate. At this point, I eat probably 80% less than I used to. Less food. Less carbs. Less sugar. Less of basically everything that makes managing my blood sugar harder. Could I eat those things? Yes. Do I sometimes choose not to because I don’t want to spend the next several hours fighting my own blood sugar? Also yes.
And I think we should be allowed to say that without someone immediately responding, “But Type 1 diabetics can eat anything!”

I know we can.
That’s not the point.

The point is that being allowed to eat something and being able to eat it without consequences are two completely different things.
I understand why people say, “Your life doesn’t stop after diagnosis.” And no, my life didn’t stop. But it sure as hell changed.

I wish instead of trying so hard to convince newly diagnosed diabetics that everything can stay exactly the same, we were more honest about how much this disease can change your relationship with food, your body, exercise, sleep, going out, and even the most basic decisions you used to make without thinking.

I don’t want pity. I don’t want to be told what I can or can’t eat.
I just want people to stop sugarcoating how exhausting it can be to live with a disease that requires you to make decisions your pancreas was supposed to make for you.

My life didn’t stop because of Type 1 Diabetes. But pretending it didn’t change doesn’t make me feel empowered. It makes me feel like we’re not being honest about what living with this disease actually takes.

So I went into DKA at the start of this year and was diagnosed with T1D. But my parents seemingly still do not understand this illness, nor do they seem like they want to learn either.

My mom is kind of traumatized by T2D as almost all of her siblings, and both of her parents were T2D and she watched T2D complications slowly and painfully kill the both of them. And so because of that she took every measure in changing her lifestyle to make sure she avoided diabetes. We (me and my siblings) almost never had ultra processed foods or drinks in our food pantry or fridge growing up and were put in sports from a young age.

My parents seem to think that I’m a T2D diabetic and will tell me to limit or out right stop my short acting insulin usage…and then when my sugar is 300, 400 something they blame my diet even though I eat almost the same foods everyday, count my carbs, so on and so fourth. And I am very active physically (I have been running and lifting for the past several years for several days a week. I’m 170 lean at 5’8”).

I try to tell them that yes while my diet is important, things genuinely are not my fault.

Talking with my mom today I learned about a friend of family. I was too you to remember meeting him. He was a friend of my grandfather.

Jack McCarthy, diagnosed at 3, in 1937, and lived to 74. A T1D for 71 years.

Odds at the time said he wouldn’t make it to 20 years of age. He beat those odds and raised a family, 10 grand kids and 3 great grandchildren.

A large portion of his life was before CGMs, pumps, mRNA insulin, and test strips.

This is Impressive and encouraging to hear about him and what could be done with the old treatment options.

Jack even did a few fundraisers, walking 850 miles for one.

https://manufacturingchemist.com/jack-walks-the-walk-31039

I’ve had type 1 diabetes for the majority of my life, and something I’ve noticed among friends in the health sciences is how differently diabetes technology can be viewed when using it is temporary. For context, we have been studying diabetes and diabetes care for several years.

My peers have been giddy and even “jealous” about getting to wear a CGM. One joked about eating a ton of sugar just to see how high she could make her blood sugar and commented that the device “didn’t even hurt.” I understand the interest in trying a CGM, and I think firsthand experience with the technology can be valuable for healthcare professionals who will be providing diabetes education and caring for people with diabetes.

What is disappointing, though not surprising, is the lack of awareness surrounding the experience. A CGM may be an interesting two-week experiment for them, but it is a medical device that millions of people rely on continuously. The highs and lows that may be interesting to watch temporarily are the same ones people with diabetes spend their lives trying to prevent and manage.

The issue isn’t experiencing the technology; it’s treating a medical device as a novelty without recognizing what it represents for the patients who depend on it every day. It is particularly disappointing to see that attitude from future healthcare professionals who have spent years learning about diabetes and personally know someone who has lived with it for most of their life.

EDIT: Two non-diabetics are receiving leftover CGMs for free, one time.

EDIT 2: There’s nothing wrong with using a CGM out of curiosity, it can be an exciting opportunity to learn. Just approach it as a medical device, not a toy.

My son 35M has been diabetic since age 16. The NHS has been great looking after him but they won’t fund him an insulin pump (basically he’s too good at managing it). I’ve just had a pension payout and could fund one for a few years.

1. is it worth it?
2. Will the NHS still monitor him
3. How easy is it to transfer back to the NHS/old system when the funds run out?
4. Are there any other things I need to think of.

Thanks in advance.

Edit: Many have asked why he would want it if he’s managing well. Firstly it’s the constant injections, belly fat is really destroyed. Secondly it’s that support it would give so he can relax a bit, as you all know it’s just very tense.
You may also wonder why he cannot afford it himself. Well he did have a decent job as an ‘on the road’ engineer but his sugar levels fluctuated greatly at night and often caused him diarrhoea in the mornings. This meant he had to call in sick because he couldn’t drive. His sick record crept up and rather than be sacked he resigned. Since then he has started a new career path, working in an office as a project coordinator. They know his circumstance and tbh know he’s stuck and are only paying him just above minimum wage. Frustrating but long term there will be opportunities and they are retraining him. It’s difficult to start again at 35 and I would just like to give him one less thing to worry about.

First real post and I'm at a loss. About 3 years as a Type 1 diabetic. Went to Dollywood (FANTASTIC) and took 2 extra Dexcom's for only a 4 day trip. On day 2 I changed out my Dexcom 7 and it did not work at all. No biggy - I had another one so I put the 2nd one on and it worked only a few hours and then stopped working. I was at a loss. I did have a backup injection pens so that's what I did. Day 3 was scary but pushed through it by using multiple daily injections. Went to bed at 136 but woke up at 364. Woke up in DKA (feeling sick - head swimming, nausea) on day 4 but we were going home. Drank 3 large glasses of water and 2 cups of coffee. If my numbers were going to stay high or even moved higher - I was heading to the hospital. Took 4 units of regular insulin and some long acting insulin (outdated) and my numbers started coming down. Slowly but steady. Used my Tandem Mobi to start slowly knocking the numbers down.

Driving home I must have stopped 40 times to go to the restroom....I had guzzled water for sure but not as much as I was pee-ing out! When I got home I tested for DKA and was fine then. But, it took all day to get back to normal. New Dexcom installed. Took a 4 hour trip and turned it into a 6.5 hour trip because I had to stop every 10 minutes to go to the restroom. Guess that is what happens when you are in DKA.

Boy - this is challenging. I can see where this disease really kicks you in the rear! What a mess.

Hi everyone! I’ve been diagnosed with t1d for 8 years but i’ve always used humalog & lantus mdi or admelog when i was on a pump. I just got my lantus refilled but I’m currently having problems with my insurance and am unable to get my humalog refilled and only have 60u left so i’m switching to using Novolin R that you get otc at walmart. From what i’ve read i know it works a little slower and the duration is longer so i’ll definitely need to prebolus a little earlier? My carb ratio is 1:6 so i do generally take quite a bit of insulin I do have a dexcom g7 to monitor while i’m adjusting and switching however it’s not always accurate as im sure you guys know lol so i am slightly worried about that. Obviously I am talking to my endo team as well but I was wondering if anyone had any personal experience or advice with using novolin and what to expect with switching from lispro? thank you in advance!!

Tonight was the first time I accidentally dropped a vial of humalog and it shattered into hundreds of pieces. You would think the vial would be more heavy duty. Nothing like wasting a container of liquid gold. 😥

I’ve been diabetic for 35 years and have been using the Dexcom G7 and Tandem Mobi since they came out. I’ve also used their predecessors over the years.
My Tandem Mobi has been replaced twice, and over the past five months, I’ve had more Dexcom sensors fail early than actually make it through the full 10 days.
At this point, I’m just looking for diabetes technology that works consistently. I really like the Tandem Mobi algorithm and closed loop system, so I’m hesitant to switch, but I’m getting frustrated with the reliability issues.
For those of you who have tried different pumps/CGMs, what are you currently using and loving? And what have you used that you definitely would NOT recommend?

Hi there. So my niece is 3 years old and is newly diagnosed 2 weeks ago. She’s been put on the Libre 3 and is supposed to be going on the MiniMed this week. My issue and question is, that for example, last night the Libre alerted us 3 times throughout the night that she was low and below 4.0mmol but each finger prick shown she was above 6.0mmol but if the pump goes off readings like this, then it will be delivering insulin or pausing insulin based off of false readings. I’m on the Omnipod 5 with a Dexcom myself and don’t have these problems but they said she can’t have an Omnipod yet as it’s too harsh and the MiniMed isn’t compatible with Dexcom.

Does anyone have any advice about this, is it normal or should we avoid the pump for this reason. Or is there another pump to ask for before she gets it. Thanks in advance

I’m fed up with Control IQ. I’ve tried regular mode and sleep mode and it always makes me low. It’s good when sitting at my desk but the second I stand up, I’m so low I need over 100 carbs. Ive been so scared at times I’ve had glucogon at the ready. I’ve tried fixing ratios but it’s pointless, it’s just too aggressive. Does anyone else have this problem?

Also the Mobi alarms are giving me the worst alarm fatigue and burn out. It vibrates so loud and draws attention. Sometimes there doesn’t even appear to be a reason it’s alarming.