I’m new here and have so many questions, but just to begin with and to help slowly get my head around things, I have one question; do the presence of GAD auto-antibodies mean I have LADA or does it mean I have the potential to develop LADA?
Thanks for the reply and the articles. Ok yea that is my understanding too, I’m definitely still producing insulin at what I hope is a normal level as I can control things with my diet and exercise etc but I wasn’t sure if my pancreas is being attacked yet or not. Did a little more reading last night and it seems like I’ll hopefully be able to keep things under control myself for another while yet.
No need to share more than you’re comfortable with, but I’m curious how you came to have the GAD test in the first place. It has a bearing on an all-too common issue we see around here. A lot of us have been urging for years that these tests should be a routine part of any diabetes diagnosis right from the get-go, even in non-acute cases, because we see so many people misdiagnosed based on age of onset. The whole POINT of changing the terminology from “juvenile” and “Mature onset” to Type One/Type Two back in the 80s was to break that association, and yet it still persists (“You’re too old to have Type One!”). As a result people show up here all the time after being misdiagnosed and mis-treated for months or even years, struggling and failing with the Metformin/exercise/diet regimen and being lectured at for “noncompliance,” before finally getting one of these tests.
It seems like your case might be the reverse of the usual pattern, so I’d be very curious to know what the sequence was that led to having the GAD test. Have doctors finally started to see the light?
Edited to add:
Yes, I certainly hope that works out. LADA can have a long onset, and certainly all of those practices are beneficial in terms of boosting your insulin sensitivity, a helpful thing which ever “Type” you have.
You may be in the honeymoon phase. I was LADA and had bg of 400. Cut out the carbs and was insulin free for about 9-12 months then body eventually stopped producing insulin. Saving grace is the Type-1 is well researched and if you follow the plan you can live a pretty normal life.
No problem at all sharing, I’m still trying to get my head around all this. I initially went to my GP with a UTI and also to try to get to the bottom of persistent migraine, brain fog and fatigue symptoms that started about 12/18 months ago. He ran the usual blood tests and everything came back normal and within range. He also ran another few tests for things such as Haemocromatotis, Coeliac etc and they also came back clear. We were a little stumped at this stage. In the mean time I began to investigate and track my symptoms and it lead me to read up on hyperglycaemia and hypoglycaemia and I began to see a pattern which matched these symptoms so started tracking my glucose. I felt my glucose levels were going too high and then going too low for what I was eating, I’ve a pretty healthy diet and I exercise, but I this is exactly when I would get symptoms so I knew it was to do with how I was processing carbohydrates. I insisted on a Fasting glucose test and a GTT, while both were within range they were on the high side. I am not insulin resistant as far as I know and we all agreed I don’t fit the profile for T2 so just to rule it out we did the antibody test, expecting it to come back negative. And so here I am, I knew there was something not right and I’m glad my doc listened to me but I did have to persist and do a lot of reading and listening to podcasts for info to get answers.
Oh wow that was fast alright. I guess I’m lucky we figured it out relatively early and I already have a good diet and exercise regularly so a little bit of tweaking should help prolong this stage all going well. That’s good to know that even as it progresses things can still be normal. It’s just a bit hard to swallow at the moment, but I’m sure I’ll get my head around it.
I believe there’s some evidence to believe that early intervention can ameliorate the progress of the disease, so that’s hopeful. As far as having to go on insulin is concerned, that’s at least a much easier thing to deal with now than it was 20 yrs ago, let alone 40 back when I was dx’d. Not only the better insulins and better tech, but the platforms that allow PWD to share info and inform each other is hugely important. I was dx’d in 1983 and never met another T1 until I’d had it for 20 years. I’ve learned vastly more from exchanges with other T1s than I ever have from doctors. There’s just way more granular stuff that you need to know and can’t get from people who aren’t living with this 24/7/365.
BTW, unless I missed it you didn’t say if you got an A1C at some point? That test has its blind spots but for where you’re at it would be useful to see, as it can tell you whether/to what degree your insulin production has been impaired over the previous 3 months.
As far as I recall my A1c was 5.9, dr said it was within range at the time but I remember thinking from what I read it should have been lower.
I’m sure all the technology and advances have made things a whole lot easier alright, I can’t imagine how hard it was to get information back in the 80’s
5.9 is considered “pre-diabetes” but there really is no such thing there is a diabetic A1C and a non-diabetic A1C. Keep going as you are and be prepared for going on insulin in the next couple of years. Welcome to the club no one wants to join but everyone who gets diagnosed in time is delighted to have answers. Good control and vigilance will keep you healthy until you are in your dotage. And get a CGM as soon as possible. It will give you so much better control and peace of mind.
Great number for a Type 1, not so great for non-d person. Equates to about 120 mg/dL. Always important to bear in mind that A1C represents an average over approx. 3 months. You say you’ve also been experiencing hypos, which can be diagnostic as well in the case of a slow onset. You’re still producing some endogenous insulin, and you get these swings into low territory as your pancreas tries to compensate. So if you’re averaging about 120 mg/dL and are experiencing hypos as well as hypers, that number can obscure the fact that you may be having much higher highs and deeper lows along the way.
BTW this is why a CGM is such a game changer. If you’re not on insulin yet you may not be covered for one, but you may be authorized for a temporary one for diagnostic purposes. There are some caveats—seeing what your BG was actually doing between all those fingersticks can be distressing and stressful if you aren’t accustomed to this stuff, But I believe the temporary ones just send the data back to your physician or specialist so they can be there to provide context when you see the reports. I would definitely inquire about this if you haven’t already.
Thanks for the encouragement. Yea that’s exactly what I said to my GP, that was considered in the “pre-diabetic” range, and as I’m otherwise pretty healthy we knew it was not due to lifestyle therefore not an indicator of heading towards T2. I did wear a CGM briefly back in May so I could get answers for myself but the dr told me fluctuations were normal, he either didn’t listen or didn’t see a problem when I told him they were going up over 10 and then down into the 2’s
Look like I have a bit of a learning curve ahead, we are currently on holidays (great time to get a diagnosis eh ) so I will give myself the last few days of blissful ignorance before I really start digging into all this.
Yes, thank you for that! That’s exactly what I told my GP, surely the lows are bringing down that number but I wasn’t entirely sure if that’s how it actually works.
You can buy a CGM here, you don’t need a prescription so like I mentioned I did briefly wear one back in May. Once we are back home next week I’ll get back on that and see where I’m at. Thanks for the replies, it’s actually been very helpful in getting my head around things.
I was under the impression that 6.5 % was the cut off for a diabetes diagnosis, no matter what type it is.
I realize it should probably be re evaluated though since a fair number of diabetics can get our a1c under that with cgm and a little effort.
Still there is normal variation in a non diabetic person depending on their diet. It’s hard to say where the cut off should be
Thank you! I’m back home now and have started tracking glucose levels with a CGM. I’ve also been doing a lot of reading and researching. Looks like I’ve a bit of work ahead getting the hang of balancing all this but I’m staying positive. Next step I think I need to take is getting a C-peptide test to see where I’m at and go from there. I think I might be a bit further along than I thought last week though which I’m a bit disappointed about but I’ll just have to wait and see what the next appointment uncovers and take it from there. Thanks again everyone, I appreciate the replies.
LADA/Type 1 just means Latent Autoimmune Diabetes in Adults. It’s just a way to describe getting type 1 as an adult. It has a tendency to take years to completely kill the beta cells in an adult versus when you are younger. Up to 8 years plus in some cases. Although they say you usually will need insulin before 3 years. A lot of that will probably depend on how strong the attack is and how early in the process you are diagnosed.
You inherit genes that make you susceptible to getting type 1 and in most cases they believe a virus sets off the process. Once you have the antibodies it means the attack has already started. But it’s a process, and in the early stages as an adult you still can make enough insulin that lifestyle changes can help delay the need for insulin for a bit. At some point your body won’t make enough to handle your BG level well enough. There is some belief that starting insulin earlier versus later might help keep your pancreas working longer.
A1c is usually the first catch for people, with it being at a higher number. But the antibodies being present is what distinguishes us being a type 1. That antibody count can vary depending what stage you are at. I have a complete non diabetic A1c, I wish it meant I wasn’t a diabetic. For a type 1 it just is one of the tools to judge BG control. For someone in the Honeymoon phase it is also a sign of how well your pancreas is still functioning. I caught my BG going up very early on, by year 3 I was waking up to a BG of 180. I was misdiagnosed as a type 2 as I wasn’t tested for years.
So you have time, but how much time, no one ever knows. So monitor your blood sugars. Start learning carb counting and at some later point you might want to request a fast acting insulin for some low dose corrections or with some meals. I know I felt much better when I started insulin, a lot more energy. When you don’t have enough insulin your body can’t process your food for energy properly.
I have LADA - thought you might be interested in the trajectory of my diabetes to get an idea what you might expect. When I was 58, I had my A1c checked for the first time. It was 6.4. My doctor didn’t seem concerned and said people can be in the pre diabetes range for a decade or more. I ate a pretty good diet and exercised, so no recommendations were given. Two years later when I was 60, during a regular check up, my fasting glucose was 290 and my A1c was 9.2. It was only in the couple weeks before my checkup that I felt something was going on. It was a time of great stress at work and my mother had just gone into the hospital for emergency surgery. Many diabetics report being diagnosed in times of great stress. I was initially diagnosed as Type 2, went on a keto diet and got my A1c down to 5.4 in about 3 months. Felt like I had slayed it, but within a couple years, my fasting glucose and A1c gradually climbed up, in spite of maintaining the same diet and lifestyle. I requested my doctor to test for GAD65 and c-peptide, since I suspected LADA. My GAD came back >250 (a positive test was considered to be over 15). I ended up going on insulin about 4-1/2 years after my original Type 2 diagnosis when I started to see postprandial glucose peaks up to 180 even while on a keto diet (daily carbs 30-50 g/day). I started with just basal insulin and then after 1-1/2 to 2 years had to start adding insulin at meals. These days I use about 14 units of basal insulin per day, usually need to inject 2 or 3 units of rapid acting insulin for breakfast, and often get away with just my own insulin production for lunch and dinner, but may need a couple units for a meal depending on carbs in meal and activity level that day. I suspect that my diabetes will continue to progress to the point where I will always need insulin for every meal. I have found cgms to be a critical component of my glucose control. My recent A1cs have been 5.6. Hope that gives you an idea of one possible pathway your LADA could take.
Thanks for all that info, it’s very useful.
It’s interesting you say that you have a non diabetic A1c, my doctor seems to think this is the only indicator we need to watch for and I’m grand until this goes up, I disagree. I want to prevent this from going up at all for as long as I can.
I’m hovering in and around 6 mmol/L the last two days and then going up into the 9’s after meals. I’m not eating any refined carbs at all, it’s fruit that seems to spike it. I know these numbers aren’t worrying as such but they do seem a little high to me when I’m already eating a fairly restricted diet. I have no idea how to count carbs tbh, so other than avoiding refined carbs and starchy veg I’ve no idea how many I am eating. I guess it’s time to learn.