@Kerio it’s a numbers game, the idea is to minimize bad dissolved fat in your blood to hopefully have minimal or zero arterial damage or plaque, and it’s to protect your heart, statistically. The data is still incomplete as to how effective it is. The ACE inhibitors (a blood pressure medication) they will recommend does protect your kidneys. There’s data on that. Not sure what type of research you were planning but good luck.
I 57 now (holy crap) I’m on a statin but my cholesterol is low normal. I take an ace inhibitor but my blood pressure at the time started (late 30’s) was high normal, now it’s normal. So for what it’s worth, Im active and trail bike and at the gym 2x a week
Hello!
I am a 37 year old who was diagnosed almost exactly a year ago. I had no idea what was wrong with me and ended up in the ICU for 3 days, and the regular hospital for 4 days. It was a really scary experience for me, the doctors didn’t know what was wrong with me for the first 3 days. They ran so many tests and took so much blood. I went with my boyfriend and next thing I know I woke up to my mom in my room. I looked at her and said, “You are not the person I came to the hospital with.” (kind of jokingly) She replied, “No, I’m not and you are in the ICU and you have been here for almost 24hours.”
I have mostly good days dealing with it, but there are days where I feel defeated. Like it’s not fair, I lived for 36 years without it, and now I have to deal with it for the rest of my life. Don’t get me wrong, I am very thankful to be alive, but it’s a struggle somedays.
I am sure we all have days like that, that’s why I decided to reach out on here. I am seeking a little support, and am willing to be there for anyone else.
Hi Samantha. Welcome to the forum and the club no one wants to belong to. You’re right, it’s not fair. But hopefully you have a good support system - your parents, siblings, boyfriend, friends and even co-workers (some of whom I hope you count as friends too😊). And hopefully you have or will soon find a good endocrinologist who specializes in Type1 diabetes - the field covers a range of medical conditions and not all endos are familiar with Type1. They may have a Diabetes Nurse Educator (Diabetes Care and Educating specialist may be the new title) who will guide you.
You’ve found yourself at the start of a steep learning curve but learn you will. Some of it will be by trial and error as you discover what works for you - and what does not. All of us do that, that no matter how long we’ve had it (I reached 60 years with Type1 this year!).
I highly recommend you check out the book Think Like a Pancreas by Gary Scheiner. He has Type1 diabetes and works in the field so has a unique personal perspective that is particularly helpful.
Keeping a log of what you do is invaluable, and when you go to see a new doctor they will likely ask you to keep one and return with it after a few weeks. I recommend you save yourself some time and visit fees by starting now so you’ll have info to share at your first visit - log your meals, exercises, general health notes, and of course blood sugars. There are lots of apps to choose from - many of them free: popular ones are SugarMate, MySugr, and Glooko. MyNetDiary is another if you are willing to pay a yearly subscription. I find they all do pretty much the same thing and it’s mainly a matter of personal preference.
Look into getting a Continuous Glucose Monitor (CGM) - they’re invaluable and best pricking your finger multiple times a day (which I did for more than 30 years before I got my first one) and will show you how your body is responding to what you do.
Your doctor may recommend an insulin pump. If that feels overwhelming - which it may at first - and you would prefer to stay on shots - say so. It’s a commitment and worth some serious discussion and research so don’t feel pressured. And it’s not a “plug and play” device - while it is certainly convenient there is some work that goes along with it. You can always change your mind later.
If you want to cry, rant, blow off steam, or share your successes and tips you find, you’re in good company here. In addition to us, here’s a link to some celebrities with Type1. They’re good company too but of course you can’t reach out to them😜: Celebrities With Type 1 Diabetes
Just remember - we share our experiences here but don’t give medical advice so if you have those kind of questions you need to reach out to your doctor’s office.
Looking forward to getting to know you here. All the best.
@Samantha2486 You’re right it isn’t fair! It isn’t fair for anyone old or young. That’s coming from someone that was 58 when dx’d T2, then correctly dx’d 8 years later as T1 and put on insulin! @wadawabbit is right, welcome to the club nobody wants to be in…but, all that said, the reality is we’re here! Know that you’re not alone, T1 LADA’s aren’t common, but they exist all around us! Fortunately, you’ve found a good source of support, training, and knowledge among others that bear the same dx! Ask any questions you have, someone here likely has experienced the same issue or question and has a/the answer for you! Note, we aren’t doctors, can’t dx your concern(s), but experience is often the best teacher and we freely share the information we’ve learned and experimented with! And to be clear, we probably all have moments of shear madness and distress, but knowing we can turn to others here and find solace, advice, and support!
@wadawabbit Thank you for your response! I haven an incredible Endocrinologist, she is T1D also. She has been super helpful every step of the way. I have a CGM that I love, pricking my fingers hurt so bad, and I type for a living. I do not have a pump because I feel like I am more in control taking shots. I also have a great family and boyfriend. My family is still learning things, but my boyfriend jumped in head first. He knows what my numbers mean and can sometimes tell just from my mood where my blood sugar is, LOL. I will get the book you recommended.
@Tlholz Thank you for your response! It is not fair for anyone for sure! It has been a whirlwind of a year, but I have learned A LOT and come a long way! Both my primary care doctor and endocrinologist are very proud of what I have accomplished over the last months. Things like this forum help a lot, this is my first time posting anything and sharing with people. I think it will be helpful for me to hear others stories and share my own!
Hi,
I was diagnosed last month - I’m 66. Mine is caused by the immunotherapy I’m receiving for cancer treatment. Currently taking four shots per day - many highs and lows.
Next week I’m getting the Mini Medtronic 780g pump. Praying that helps correct the swings.
Appointments with endos are a year out where i live! Currently seeing a nurse practioner who is also diabetic.
The book - Think Like a Pancreas was recommended to me and i got it. I highly recommend it! Speaks in language I can understand.
Good luck to you on this crazy journey.
Beth
Hi Sarah, I’d say welcome to the club, but not sure it’s a club any of us would sign up for ;). Similar to you I was diagnosed later in life as was closer to 50 than 40.
Hi Sarah, I was just diagnosed about 6 months ago, at the age of 59. Needless to say I was shocked!
I actually have LADA. My PCP had been treating me as type 2, since 2018. I responded to Metformin for 2 yrs, then he added Tradjenta, and I did well with that for 2 more yrs. When he added Jardiance, that’s when everything fell apart! I lost a ton of weight and my A1C eventually rose to 11.6. Very lucky I didn’t go into DKA. Even though I told him when he diagnosed me as type 2 that my Dad was a type 1 since the age of 7, he told me I didn’t have to worry about type 1 because of my age. The endo that he referred me to said it’s not just “juvenile diabetes” anymore. I still grieve my old life, and the things that I can’t eat anymore, even though the dietician told me to eat whatever I wanted as long as I covered it with insulin! On top of this, I have health anxiety & am currently seeing a mental health person for that. I try to be thankful that I was diagnosed at a later age, but still have days where I feel like this is so unfair! My Dad went blind and then took his life at age 60. I just pray that I get through the rest of my life with no major complications. Have got my A1C back down to low 7s. Glad to find a group of LADAs on here to find some support.
Hi @SherryP and welcome to the club. I just had my 60th year with Type1 and no complications. Thankfully if any do develop we know pretty well how to treat them, but hopefully that won’t ever be an issue for you.
Looking forward to your contributions here!
@SherryP hey Welcome to the forum. PCP will likely diagnose LADA as type 2. Its impossible to tell right away anyway. I am glad you are okay. I am glad you are reaching out. I’ve only had T1 for 45 years, so I’m not senior Yoda T1 here but I got a few miles on me and I have plenty of experience with depression and complications. I am very glad you are addressing mental health issues; the grieving process for health related loss can be significant. Anyway Welcome to the club!
@SherryPWelcome Sherry to the JDRF TypeOneNation Community Forum! I relate to much of what you have written having “been there” during my 7 decade life with diabetes.
I hear you saying that you have now been properly diagnosed with Autoimmune Diabetes, these days commonly referred to as “TypeOne” with out regard to the age diagnosed; in my book the “L” in LADA means Lucky - you successfully have had 59 years of not needing to stick yourself with needles. The bottom line is that you and your current doctors are now properly addressing your condition whatever name it is given.
In my humble thinking, if it may be of some comfort, in 1966 I was diagnosed with Retinopathy [I had gone years ignoring my diabetes] and told I’d be totally blind within two years. That frightened me and caused me to begin looking after my health and drove me to find help. I found wonderful ophthalmologist who wanted to experinemt with a cure I worked with him and others for 34 years and beginning around the year 2000 retinopathy dropped out of being the largest cause of blindness in the world.
As for finding a group dedicated to LADA, there are a few on-line groups I’ve seen, but in that your management is, although we are each unique, is similar to all TypeOne. There are a few LADA who have joined our monthly T1D coffee meetings and contribute and learn.
@SherryP Your and my stories are like mirrors, down to age and doctor actions! I didn’t go on your oral meds, but stayed on Metformin and Glyburide for 8 years until my body gave up on being somewhat responsive. PCP gave way to an Endo who did the needed tests and put me on insulin and a CGM! I’m now on Dash pods w/Novolog, G6, and DIY Loop with a TIR at about the 90% mark. I still have days where I lose my cool and wonder why, then I look at others, particularly kids, with far more to deal with and chastise myself for the self pity. Others here give me hope and confidence! My advice: Be the lead of your team, your own educated advocate, with docs as advisors, as you’re the one that will live with results! You’re in a good forum with good people to help you when needed. There will always be challenges, but hang in there!
Thank you for your kind words Tom! Yes, I feel guilty sometimes about self-pity when I know I could have been diagnosed this as a child like my Dad was. Still, it was a shock because I thought I had beaten the odds of type 1. It was much easier when I had to just take pills. I take Lispro Junior Kwik pen for my bolus, because I can dose in 1/2 units & Tresiba for my basal. I thought I had my dosages fine tuned on not even needing insulin until dinner time because I eat low carb for breakfast & lunch. About 3 weeks ago, I had to start dosing for those 2 meals as well, which flared up my anxiety. My endo explained it like type 1 is a constantly moving target that we are trying our best to hit. I also wear a CGM & have improved my TIR to 89% since diagnosis. I have been hovering around the forums here for the past couple of months & decided I just needed to join because I can sure use the support!
Hello & thank you for the welcome! You have done great to have type 1 that long & no complications!
My Dad, unfortunately, didn’t listen to his doctors. His retinopathy developed when he was in his 30s & he had to go on disability. In his late 50s he totally went blind. My grandmother was also diabetic (type 2) & had several strokes. That’s why this disease scares me to death, plus I also had to overcome needle phobia (I use insulin pens). My doctor told me that a year from now, this will just be a blip on my radar. I sure hope so!
89% TIR is amazing - congratulations! As for needing to bokus for meals, try not to feel bad. The pancreas wants what the pancreas wants - you haven’t done anything wrong.
Hello Dennis! My goodness, you have had a very long battle with this awful disease. I saw so much of what my Dad went through in his younger years, with having to go on disability, hypos, boiling his needles, etc. I am trying to be thankful for all the progress made in treatment. When my Dad passed away in 2005, I don’t think CGMs existed then. I look forward to being a part of this group & hopefully can learn some things since endo appointments are short, although she is always good to answer any questions through my patient portal account.
Hello, Joe. Yes my endo says LADA is basically the same as type 1, requiring insulin. I am on small doses right now (Lispro & Tresiba) as I’m a small person & sensitive to insulin right now. While my PCP was treating me for type 2, my A1C jumped from 7.2 to 11.6 & I lost about 30 pounds. Just wish I had known that type 1 could be diagnosed in ages other than children & teens. I don’t blame my doctor, though. I was very much overweight, and had a bad diet. The hardest food for me to give up has been french fries. I was already dealing with anxiety before this diagnosis, due to several other things & the med that I had been taking for it for almost 15 years stopped working
