I have been trolling these discussions trying to find a place to reach out for support. Many posts that are suitable haven’t had activity for over 6 years. So here I am…
I am 52 and was diagnosed earlier this year. I have always been small, active and a good eater, so when diagnosis showed up I was confused, really angry, and quite upset. Now I have the true diagnosis of LADA, and am in the honeymoon phase. I have been taking oral meds (Metformin and Januvia) because they insisted I am T2D despite being GAD+. I still have some insulin, though I know my pancreas will give up on me any time. My biggest problem is that I can’t keep weight on… I am losing despite eating 3 meals and 2 snacks a day. I think it’s from not eating enough calories (I use myFitnessPal) but restricting carbs I find it hard to find things to eat and keep me sated.
I desperately don’t want to start insulin, though my endo told me 90% eventually have to use it. I hate monitoring my BS and worrying about it. I hate this disease and am having trouble accepting it.
Our stories are very similar. My official diagnosis is type 1, but endo says I am still producing insulin, but not enough. I’m on 4 shots a day and tomorrow I will be insulin pump training. I’m a little scared, but it will be better. I’ve been reckless with my health. Many ups and downs. But I just decided to raise the white flag. I know how you feel. It’s a never ending rollercoaster. I either eat to much or not enough. Always gaining or losing lbs. I have a really bad sweet tooth! But maybe more calories from protein?
I was diagnosed Jan 2016 at 42 years old so i kind of relate. I just accepted it last November so i am really new. I have lost over 70 lbs since around January. Im a healthy weight now but when i eat to control my blood sugar i start losing weight almost daily and its scary when you think your eating enough. I have been adding higher calorie foods to stop it but i havent figured anything out yet.
To GritzT1 - at what point did you give in to starting insulin? My endo says it is my best course of action, but I really don’t want to admit defeat (I know I need to stop looking at it that way). I keep thinking that if I keep eating right I can fight it, but as Joshm2_99 says - when you eat that way, weight suffers. Are either of you taking oral meds? That’s also what confuses me; as long as they “seem” to be working for my BS, why trade them in for insulin? The thought of having to count carbs and plan just scares me to death.
I believe that pretty much everybody with T1 was shocked at first, then horrified second because they were told (gently or no so gently) to either start injecting insulin or else.
When your blood sugar is above normal your body can start to dump sugar and water out your kidneys. YOu can loose 8 lbs per day of water weight that way. When your blood sugar is elevated, and you don’t have enough insulin around, your cells are actually starving and your body begins to convert fat and muscle into usable energy. The tell-tale for this conversion is ketones. easy to test for because they show up in your urine. The loss of water fat and muscle is probably what’s making you smaller.
so you kind of need 3 things to not loose weight when your short on insulin: you need food and you need insulin and you need to keep your blood sugar normal. Easy! (I am kidding, I have 30+ years experience and it’s hard - believe me)
so for @joshm2_99 and for @MissCookies, if you want to maintain weight, you need the 3 things above. to gain weight, add more insulin and eat more to keep your bs normal. To gain muscle: increase carbs, add a lot of protein (and maybe fats) and work out - you may find that adding exercise you can keep the amount of insulin you are used to about the same. Because insulin is a growth hormone, you’ll need it to balance your blood sugar and you’ll need a bit more to get bigger.
if you decide to starve yourself to keep your blood sugar in range, and you are gad65 antibody positive, you will eventually lose weight because you will eventually not make enough insulin to survive. Sorry but insulin is necessary for metabolism, you’ll eventually have a big decision to make for yourself.
I was diagnosed T1 in March 2016 at age 50 and was in denial at first thinking that the doctors were quacks thinking that I was diabetic. They were right ;). I lost some weight at first, mainly due to my lower carb diet, but stress probably added to it. Now, as I am settling in and realizing that it is still possible to enjoy eating sensibly, weight is stabalizing.
I was diagnosed in July 2014- had gone on low carb diet and lost 50#/ yr-felt great, no other symptoms. Tried Metformin and Januvia with no results. In 3 mos, A1C went from 6.7 to 12.2 with no warning. Started on pen insulin which helped but couldn’t bring down A1C lower than 7.8. GAD +. Finally went on pump in Feb 2016; not sure I like it but have gotten A1C down to 7.1. And if it will keep me from developing kidney failure or peripheral vascular disease, will stay with it for the time being. Was very upset with diagnosis initially. Still looking for answers.
Do your research and continue to ask your doctor all the questions you can. LADA is becoming more prevalent in adults, known as Type 1.5. But most of all, try to eat right and get decent rest. Also utilize resources like diabetic educators, American Diabetes Assn, etc…
Hi just wanted to echo that @Joe gave some good advice. If your blood sugar is elevated, you will lose weight like crazy. I lost a ton of weigh before my diagnosis, which quickly stabilized after I started insulin - and that was even with many dietary changes. You can get a urine ketone test from your local drug store, and if it were me, I’d want to know.
I also want to give you encouragement about insulin. I know it’s scary. I wish it were oral instead of injectable. But at the end of the day…it is a miracle. An absolute miracle that I am grateful for every day. It keeps me healthy. It is essential for my cells to actually take up the fuel they need. And, at least to me, it offers more control than drugs like metformin. I was (briefly) misdiagnosed with type 2 and given metformin. I remember being scared to eat anything, because I was never sure the metformin would be “enough” to cope with the meal. With insulin, you give yourself what you need to cover the carbs. You can have more assurance your body will handle it. Of course, it’s a bit more complicated than that because our bodies are complicated. But overall…it is truly remarkable.
I have a very vivid memory of when I started taking insulin. I was so terrified before…very scared about what it meant for my life. But within 48 h, I felt SO much better. I felt energized and alive again. My body was finally getting the fuel it needed after months of literally starving due to an inability to take up glucose. I felt so great-I was running around the park so much and doing all kinds of crazy activity, the doctor actually had to tell me to slow down a bit while I figured out my insulin dosing! So…I understand your fear, but please know that giving your body what it needs is not something you should ever regret.
Thanks everyone for the encouragement. I’m planning to attend the TypeOneNation summit in 2 weeks (great timing!) to learn and connect with others going through what I am. I feel so much better knowing there’s a support network out there - I’d been struggling on my own up until recently, and welcome all help.
On a side note, did any of you notice an improvement in your sleep once you started insulin? My sleep has been crap lately.
I find my sleep is better, more restful, when my BGL is “in range” for me. When to low my sleep is restless and when high it feels as if I never went to bed. But don’t confuse the almost comatose “sleep” you may experience when very far above range with good slope.
Do attend the Summit; I just returned from the todays TON Summit in Tampa and found it helpful and interesting even after living with T1D for 60 years; and as bonus, I met some people for support and advocacy.
In a way I was lucky. I got T1 at age 51, but it wasn’t LADA and was diagnosed from being in DKA, so I never had to agonize over starting insulin. If you are at the point of needing insulin, don’t put it off. I nearly died from DKA and took months to recover (heart rate high, blood pressure low for months!). Don’t risk that, the organ damage is so not worth it. Please listen to your doc, if starting insulin is recommended- you should seriously consider it.
I was diagnosed with LADA in my 20s, and had to carb and glucose coverage about 1 year ago. I am 39 now. My fasting blood sugars are still normal but I have very high post prandials. I am ok with it. All 4 of my children are true type 1. Genetic testing shows I carry a faulty gene. I somehow managed to escape type 1 at a young age, but I am acutely aware that it is coming. I am tired of waiting for the other shoe to drop. Just wish my pancreas would quit already.
Don’t conjour up the devil. Accept where you are and what you are. Making things worse won’t make you feel better. This disease is frustrating even on its best day.