New to it, just about a year in

Hello,
My name is Jonas, I’m 47 years old and I currently live in Canada.
Fall of 2021 I got pretty sick around October felt like a cold, voice was terrible, was super weak, was sick for about maybe 7 weeks. Had trouble climbing flight of stairs, I was so winded.

Shortly after that, or to be honest could have been concurrently, I can’t quite remember - was waking up to urinate often, had an insatiable thirst that was absolutely unrelenting. I drank juice mixed with sparkling water to satiate the constantly parched mouth. Was scared I was dying of cancer or something. After bloodwork at the doctor had an A1C of about 12.5 or so.
He told me I was a diabetic, type 2, and prescribed Metformin.

Took me until about mid December to start testing my glucose w finger pricks.
Felt so awkward and embarrassing, especially out of the house, no one but my wife knew, and for some reason I needed to keep it a secret.

I didnt want anyone to know of my weakness (not lack of strength but my health condition, the fact I had diabetes I was convinced would be met with disdain by others). There was no real rationale for this, my belief was not an evidence-based but I do work in a very competitive but not toxic sales environment.

I still drank, still do, and smoked but started to eat keto bread and avoid carbs and whatnot.

In the beginning of 2021 I had started consciously losing weight.

I’ve walked around at about 180 lbs to even 200 at my heaviest for about the last 8-10 years or so.

I had started lowering my 4-7 tallcan of beer-a-day habit, eating fewer carbs and was intermittent fasting for about 4 months

I went down to 170 and I was pleased with myself.
At 155 then 150 I was thilled with my new 30" waist. I looked good and felt great.
At 135 I started to become quite concerned, and at 128 I was borderline panicking and thats when I went to the doctor that November.
March 2022 my Endo ran an antibody test after my aic remained largely unaffected by the Metformin and went on basaglar to start.
I decided to say screw fingerpricks and got on dexcom then libre 2 despite having no insurance. Then a few months later Bolusing was introduced. At that point I realised the very reasonable “slow reveal” my Endo was doing so I didnt get overwhelmed with all of it lol - grateful that tricky sonofagun did it that way (he’s great actually)

I adapted quite well and did it rather quickly in terms of carb counting/bolusing and the like. It’s now just part of my life, and it does get emotional at times.

Leaves me wondering what was the trigger?? Did I get Covid much earlier and not realise it and was that what caused the immuno response? Was it a reaction to the vaccine? I dont know and I guess its irrelevant.

I’ve kind of immersed myself in a newfound love of Stoicism over the last few years, even before this, and that has helped me greatly I think.

I have glucose swings at times of course, but work hard to be at 70% range, mostly I’m in the 60s.

I’ve recently heard of looping, read about the omnipod on this forum, and am curious about these types of methods of glucose management. The bulkiness of pumps seems so awkward and the thought of tubes even more so.

But I want to live a long time. I quit smoking a month ago, my wife is incredibly loving and supportive but she doesnt really understand alot of whats going on. Not her fault, she loves me to death, so I’m very blessed.

I was super emotional about this early last year, but have not really been broken up about things except for a couple times in the last 4-6 weeks I’ve just started crying out of the blue.

Im at about 165 lbs now, 5.9" tall, slightly muscular build w a wee belly lol.

Damned estimated A1C on the libre 2 never seems to change from 7.4, but I dont feel its very accurate. I thought that was decent, but now I realise it should ideally be below 7 so I’m working towards that.

Sensors keep failing sporadically (basically just do libre 2 now), are they any good with offering replacements for failed or “no alarm” ones? The cost goes way up everytime they malfunction. (Ontario isnt the best province for funding for diabetes)

Does one have to take pictures of the barcodes or something?

Anyways, this seems like a cool space, and am happy to have found it. Phone calls w the diabetes educators sometimes feel wierd or forced. This is the first time I’ve interacted w any platform about this.

I dont know anyone who has type 1 or if I do, Im not aware they do.

Im sorry for this jumbled post.

When I first filled my prescription for insulin I asked the pharmacist how to use it. He was stunned. He looked at me speechless. I said its the first time I’ve used it.
Felt like he almost didnt believe me. I know developing type one as an adult is rare, hence the term juvenile diabetes isnt really used anymore I guess.

Thanks for having this place and letting me put some of this out there.

7 Likes

Welcome - you’ve found a great place! D is nothing to be ashamed of. I have T2 and I felt the same way at first - like somehow it was ‘my fault’ because I ate too many cheeseburgers, but that most assuredly is NOT the case. FWIW, you mentioned not feeling the Libre2 was reliable - in my experience, you are right. It was often off by as much as 30 points on BG. There are a couple of threads about it if you poke around the site, but I’ve found the Libre3 to be an improvement in every parameter, including, most importantly, accuracy. The only downside is that it costs triple the amount on my insurance plan, so as long as the cost isn’t prohibitive for you, I’d recommend asking your doc to switch you over.

Good luck!

2 Likes

@Jpennell20 Nice intro! Glad you found us here at FUD! Not that you want to hear it, but welcome to club! We aren’t all of one mind, but we’re not shy and share our experiences freely in hopes of helping others. Feel free to ask questions and share your own thoughts!

You and I sound very similar, save I’m older (68). Mis-dx’d T2 ≈10 years ago, meds stopped working ≈2 years ago and correctly dx’d T1 by GAD test. Lantus/Novolog immediately, Dexcom a month later. MDI for a year while researching a lot! Changed to local Endo (more up-to-date knowledge), prescribed Omnipod Dash pump (I didn’t want tubes). Started Looping (-dev version) on my own last March (greatly improved control); doc didn’t help (no FDA clearance), but likes the results and has interest (FDA clearance last week may convert him).

We don’t often get dx’d at this age (you and me), but it’s not unheard of. We’ve very similar storylines, except I‘m very open about dx. I was already retired, so no fear of “work” negatives; if others can’t deal with my condition it’s because they lack education and understanding…I’ll help with the education, understanding is up to them. We both have very supportive spouses/wives (make sure she knows you’re thankful). Emotions are similar: I flew off the handle regularly (Type A: used to being in charge, particularly over myself)…T1 doesn’t care! I’ve either caved, gotten used to it, or (I like to think) I’ve changed (most of the time anyway) and don’t fly off the handle near as often (nobody’s perfect, eh?).

My advice: don’t be embarrassed, there’s nothing you did to deserve T1, it’s life. Tell people or don’t tell people, that’s your decision based on your needs/beliefs, your work/community reactions (their hang up, not yours), but you have to live there. Take in advice of docs, groups like FUD, ask any questions of anyone you value, but remember it’s advice, not edicts, no matter who it is. Do your own research, determine what’s right for you, and BE YOUR OWN ADVCATE! We see our docs for 15 min a few times a year, some of them “know” what they’re talking about, some of them stay up-to-date, some don’t, but you’re the one living with the results, so decide for yourself. Find a doc you trust, believes similarly or supports you appropriately! Lastly, this isn’t a sprint, it’s marathon, if you or your wife see signs of burnout, slowdown, give yourself some slack, and get help if you need it.

Sounds like you’ve made some good decisions and taken some good steps for yourself. Let us know what we can do to help…even if its just listen…and offer others the wisdom of your experience!

Hope to hear further from you!

3 Likes

Actually, that turns out not to be true. More than half the people who are diagnosed with Type 1 each year are adults, not children.

4 Likes

Hello, Jonas, @Jpennell20, good that your found this place.I am astounded that you weren’t given a little instruction on how to inject insulin from nurse educator. At least that’s what I got. It was no real issue for me because I had been giving vaccinations, antibiotics when necessary to livestock for years, both intramuscular and subcutaneous. Intravenous is a whole ‘nother thing.

Autoimmune type 1 diabetes mellitus appears to have a genetic variant present combined with a trigger. There are identical twins, one type 1 DM and the other not.

There is some evidence that a viral infection can cause (trigger) the T-cells to attack the Beta cells. One hypothesis is that some viruses have elements that are similar to something on the Beta cells. This causes the T-cells to misidentify the Beta cells as a viral invader. In effect the viral infection acted like a vaccination, setting the immune system to seek and destroy Beta cells.

Type 1 DM was called Juvenal Diabetes in the past and Type 2 DM was misnamed Adult Onset diabetes. Unfortunately this is engrained in the mindset of a lot of GPs.

Something else in the mindset of the general populace is the diabetes mellitus is a lifestyle disease. This causes a lot of grief for those who come down with any of the 3 main types of DM, but especially for those like me, insulin resistant type 2 DM.

I freely admit that I did lifestyle changes after diagnosis to gain good blood glucose management, but even with normal or near normal BG numbers for 10 years without medication, I never though I was cured. Eat a couple of doughnuts and watch BG spike.

Enough of that, you are here, Jonas, in a good place to learn from others experiences.

2 Likes

Welcome from me as well. If you ever can figure out how to look at profiles on this software, you’ll be able to see a lot about me - it always takes me about 5 minutes of fumbling around before I can get to my own profile, so I’m not too optimistic about that path.

@bkh, thanks for that pubMed post. Here’s a bit from the abstract:

Recent epidemiological data have shown that more than half of all new cases of type 1 diabetes occur in adults.

I wonder if the total number of new cases of type 1 diabetes is increasing or flat or decreasing? Does anyone know? (Sorry to hijack the thread for a second)

w/r/t your story @Jpennell20 - rings lots of bells for me as well. One of the wonderful things about these forums is that it’s a place where you can compare notes and work out some best practices. There have been a few threads on traveling and how best to do that as a T1D, for example. To call out a recent tip from @CarlosLuis , I am thinking about getting one of those elastic straps for my pump at night - thanks for introducing that to me.

Anyway, welcome and I hope you’ll find the forum as useful as I do.

3 Likes

Click on the profile picture / symbol in any posting. If I hover my mouse cursor over your profile photo in your posting, it shows the link Profile - bostrav59 - FUDiabetes

4 Likes

Hi Jonas, and welcome. The community here has a lot of very useful information. It’s been a great resource for me.

I was officially dx’d around your age (I was 48), but I had been having suspiciously high A1Cs (given my lifestyle) for a few years, so I was monitoring my C-peptide and antibody levels even before I reached the official “threshold” value. It’s possible your onset was sudden, but it might have been slow like mine and just not been tracked.

I also received very little counseling on the proper and safe use of insulin. When I was first given rapid insulin I got a few pens and a printout with a range of blood glucoses along with how many units I should use to correct for each one, given my estimated correction factor. That’s it–no discussion of prebolusing, carb counting, correcting lows or anything else. Amazing that people will dispense such a dangerous med without proper training. Sorry you had to have a similar experience.

3 Likes