Hi Goldfinch,
Thanks for telling me your story. Im sorry to hear you were misdiagnosed, I can’t understand how the doctors, my own included, keep missing it. My own doctor told me it was too rare and I couldn’t possibly have it as he only ever saw it once and it was in a man with completely different symptoms 
when I first went to him back in May. Nonetheless I insisted on doing GTT and checking for antibodies anyway, but he and his nurse both told me I was wrong and there was nothing going to come of it. They actually did manage to briefly convince me I was wrong and I was fully expecting the test to come back negative, we were happy to simply “rule it out”. Needless to say I was bowled over last week when I got the call telling me I was actually right all along.
Anyway I’ve just made an appointment to get my c-peptide levels checked. Again I had to insist on getting an appointment for this test as he said there is no reason to check these as I haven’t any “symptoms” even though I initially went to him with plenty of symptoms and that my A1c is “normal” which it is not, and because my BG isn’t raised which it is. He still thinks the numbers are normal but I don’t think he gets that they aren’t through the roof because I am already eating a fairly restricted diet and have been for a while now even before I knew what was going on, I just knew eating certain foods made me feel rubbish so I cut them out. Looks like I may have an uphill battle ahead.
Thank you for telling me how your LADA has progressed, it’s reassuring to hear other’s stories.x
Actually does anyone have any other recommendations on what else I need to ask my doctor for at my appointment this week?
I’m getting c-peptide checked, so I’ll be asking for these levels. I’m not sure what they should be, but I will have my research done before I go in so I can discuss it with him.
I’m also going to ask for the actual numbers for my fasting glucose and my A1c as I never wrote them down as they were dismissed as being “normal” so I’m unsure of the exact numbers.
I’m going to ask for the level of GAD antibodies that were detected too.
Is there anything else I should be looking for while I’m there? I want to have all the info I need starting off so I can be proactive going forward as otherwise I’d be waiting until I drop for the doctor to acknowledge there is actually anything wrong. I really want to start feeling like my old self again, I’m sick of the headaches/brain fog/fatigue/general feeling rubbish etc… that I’ve been experiencing for the last 18 months.
Thanks.x
Once I had my high GAD and low c-peptide results, my GP referred me to an endocrinologist, who has been great! The standard of care here in the US is not to treat until your A1c is 6.5 or above. So even as my A1c rose to 6.2 while I was on a keto diet, my endo still considered my diabetes “well controlled”. I could follow the trajectory and see that insulin was inevitable for me. I could no longer keep my glucose peaks below MY goal of 140. (The standard of care goal for diabetics is 180.) I have tried both Metformin and Sitigliptin and neither did much for me. I suppose if you have insulin resistance they may help. There is a calculation called HOMA IR (https://thebloodcode.com/homa-ir-calculator/) that tells whether you have insulin resistance. All you need is fasting glucose and fasting insulin results to do the calculation. I asked if I could start insulin when my A1c was 6.2. Even though my endo said I didn’t need it yet, he understood that I was very conscientious about maintaining my glucose levels in the normal (below pre-diabetic) range and wrote the prescription. So, my recommendations would be to get a fasting insulin and glucose at the same time, as well as c-peptide. Also get a referral to an endocrinologist who understands LADA. You are probably several years from needing insulin, and maybe there will be some research in the meantime of a way to stop the beta cell destruction so you never need insulin. There was some research showing that Sitigliptin was able to slow beta cell destruction, which is why my endo tried it for me. I think the higher the GAD results, the less effective - and my GAD was off the charts high. There has also been some recent research with Verapamil, a blood pressure med, in preserving c-peptide. (https://www.practiceupdate.com/c/149332/2/8/?elsca1=emc_enews_daily-digest&elsca2=email&elsca3=practiceupdate_diab&elsca4=diabetes&elsca5=newsletter&rid=MjUwNjk5NzgzOTQ1S0&lid=20849416). So there is hope! Although I was devastated with the diagnosis at first, I now am ok with it because I have all the tools I need to maintain normal glucose levels. Sorry for the long message - good luck on your journey!
@Liz6 - I think @GoldFinch’s recommendation applies well to your situation.
I was diagnosed with T1D at the age of 30 in 1984, likely LADA. I knew nothing about LADA at the time and wish I did. You are so much better informed than I was. You are also learning about how unaware the average clinician is about “new” medical issues. Don’t lose confidence in your gut instincts and your primary authority as the one with skin in the game!
Thank you Terry. I’m just lucky we have mobile phones, laptops and the internet available to find out information these days. Our GP Doctors see so many patients with so many various issues on a daily basis so I guess they can only do and know so much. I do think it’s up to us to listen to our bodies and when we know there is something not right keep searching for answers.
GoldFinch thank you so much for the detailed reply and information. Fasting insulin and fasting glucose are added to the list to ask for on Thursday! I’m going to ask him for a referral as well. Now to be fair he has been in touch with an endocrinologist for advice as he wasn’t familiar with any other LADA patients since that one man he diagnosed years ago, but I would rather deal with one directly myself.
I will have a look at both of those links, thank you!
My A1c is 5.1%. It has been between 4.9-5.3% for a while now. I use insulin to control my BG levels, hence the non diabetic A1c. I do eat what I want, although I am a vegan. Carb counting is critical. While you aren’t taking insulin yet. There is a difference in response to eating a bowl of pineapple or a bowl of broccoli. One is potentially 30 carbs and the other 10 carbs. I eat plenty of fruit, I love pineapple, but fruit hits your system pretty fast. Fruit is loaded with benefits, but also a fairly fast hitting natural sugar source.
A “normal” person will eat and within about 5 minutes your body will release insulin to deal with it. So a “normal” might spike some, but it is taken care of pretty quickly and your pancreas releases more insulin as needed, and in the automatically right amount. As your natural production goes down, your response just won’t work as well. Instead of 100 troops to help, you might only be sending 50. So it will take longer to clear up your BG levels. And it might not be able to make enough to return you to a normal level.
As a vegan, before insulin I would eat a large salad, greens and veggies, sometimes some beans scattered on it and watch my BG level spike to 250. It didn’t matter how healthy of the food I was eating, I just didn’t make enough insulin to cope with it. We need insulin to even eat a bowl of broccoli and to be able to process the carbs in the broccoli. To me it sounds like you could use a little insulin to help you eat. A healthier diet is obviously better for everyone, diabetic or not, but we can eat what we want, we just have to learn to dose for it. And that is where carb counting comes in. Using insulin made me feel much better and have more energy. I could actually utilize that food I was eating.
Unfortunately I’ve read that a GP will only run across a type 1 once in their practice. So they really aren’t very familiar with it. Plus because they are not treating a bunch of people with it, their knowledge might be lacking and outdated. It’s great you pushed to be tested as too many get really sick before they find out. I was misdiagnosed for over 8 years, it wasn’t until I switched doctors and she sent me to a new endo who tested me that I was diagnosed right. It turns out that is also a pretty common way to end up being diagnosed right. Since you tested positive for the antibodies you should be able to push to see an endo which will be more familiar with Type 1/LADA (unfortunately there can be a difference in endos too).
Personally it’s my belief that learning insulin usage before you absolutely have too is easier. And you have the added benefit of being able to eat what you want to with a fast acting one. Plus there is a belief that adding insulin earlier versus later might keep your pancreas working longer.
Once you tested positive for the antibodies, the process has started. The A1c just lets you have an idea of where you might be in that process. Same with a C-Peptide test. But neither gives you a full picture of what is going on with how you are dealing with food. An endo should pay more attention to the CGM graph and know what it means.
Hi Marie20,
That’s great to hear you are a healthy vegan, that’s so reassuring to know it’s possible! I was eating predominantly plant based up until around 6 months ago, but due to reducing carbs I’ve reintroduced eggs, salmon, beef around once a fortnight and small amounts of cheese. I love fruit but it seems a lot of it is currently off the menu now too. I eat a lot of veg, salads nuts & seeds etc. I go to the gym, swim, and run regularly, I do at least one of these each day as well as walking my dogs. I thought I was tired all the time because I’m active and I also work and have two kids, life is busy. But I’m starting to realise I shouldn’t be tired ALL of the time, and before I cut the refined carbs I used to feel so awful no matter what I did. Almost daily over the last 18 months I’ve had these waves of fatigue and I can hardly think straight or see straight, I’ve fallen asleep while attending matches, concerts and at my desk (lucky I’m self employed lol). But that really only happens after refined carbs so now I avoid them like the plague and it hasn’t happened in the last two or so months. I don’t know what my BG was going up to when that used to happen. I often feel shaky when coming out of the pool, before I knew what was going on I started bringing snacks in my gym bag and I’d have to sit down and eat before getting changed, I’m wondering now if that was due to low BG. I haven’t been tracking BG long enough to confirm this.
I am not going to let myself get really sick before taking action, if I kept going the way I was three/four months ago that’s exactly where I was heading. I’m definitely going to seek out an endo who is more clued up on LADA and ask about fast acting insulin. Thanks for the encouragement!
Sorry for the long essay, the pennies are starting to drop here and I’m getting a better understanding of what has been going on over the last 18 months.
I’m in the same boat, I was diagnosed with type 2 on july 21st last year, but I was able to control it with diet and exercise and able to lower my a1c to 5.9 that way pretty much no carbs… I had a feeling I was actually type 1.5 due to my body type (extremely thin) and listening to other people that had similar experiences. I noticed my morning BG was slowly going up over-time despite no major changes in my routine and ordered a GAD antibody test for myself which came back positive. I told my doctor I was worried I had LADA but they brushed it off so I had to take it into my own hands to get the test (used quest diagnostics). According to Dr. Bernstein you can protect your remaining beta cells by using insulin… I just started and still trying to figure out the proper doses to everything…
Welcome and it looks like you are already doing TCOYD (taking care of your diabetes).
I’d like to cut the doctors a bit of slack… If they are middle age or above they were taught, erroneously, that type 1 begins in childhood and type 2 in adults. They probably use the outdated names in their heads Juvenile Diabetes and Adult Onset diabetes.
Just a bit of slack.
But to complicate matters type 2 is progressive and LADA is often very slow progressing. This means that those with type 2 can often go from diet and exercise alone, to oral/injectable drugs and finally insulin. LADA can follow a similar track. This doesn’t make them the same, but just adds to the possibility of misdiagnosis.
When I begin having my BG rise with increased exercise and carb restriction I requested a C-Peptide and antibody panel. Well my C-Peptide was on the very bottom of the normal range and I was anti-body negative. This is when I started Lantus insulin. Now my C-Peptide is below normal and I am on a pump. So, I am not LADA (type 1) but what I think of as stage 4 type 2 diabetes.
A friend of mine was like you diagnosed as type 2. Over a period of time the T2DM therapy was not working and his doc did the anti-body panel- he was positive with very low C-Peptide.
The anti-body panel is the gold standard for diagnosing type 1 as a low C-Peptide just means dysfunctional Beta cells which can be from T2DM or pancreatogenic T3cDM which is caused by diseases such as cancer or pacreatitis damaging the exocrine and endocrine functions of the organ. The pancreas secretes 6 different glucoregulatory hormones and produces several digestive enzymes.
As bad as type 1 DM is a person who has lost all pancreatic functions is in worse condition. All the hormones, not just insulin are gone, but also the digestive enzymes that are crucial in the digestion of fats, proteins and carbs.
It’s my bedtime, what am I doing on the internet?
Welcome @Revient to tudiabetes.
Hello @Luis3 Thanks for the lengthy reply and the welcome to the community.
I appreciate the resources I will definitely look into it. I kind of wish that I knew it was LADA sooner but it did give me time to make adjustments at least to my diet and exercises. (life-style changes). I feel better now than I have in a long time from those alone. I still have pancreatic function so hopefully I’m able to preserve whatever functions I do have.
I always had a phobia of needles so it was the worse diagnosis I could get, I understand your point about doctors often misdiagnosing it as type 2.
Anyways, thank you for the welcome, I look forward to learning alot more and taking care of my health.
I was 21 and I had lost weight recently. At the first doctor I saw I weighed 160 lbs and at6’3 I was clearly not a typical presentation for type 2. My normal weight was 180 back then.
Still the doctor suggested to me that I don’t eat too many carbs and see if it helps. 3 days later I showed up at the ER and diagnosed me with type 1.
People even doctors have this small 8 year old kid burned into their minds as the kid who is type 1.
I’m shocked this kind of thing still goes in even with all the testing we can do now.
That’s the honest but sad truth of the matter. It probably doesn’t help matters as the large majority of people with diabetes are type 2.
@Luis3 I realize the why it can happen, but I am not cutting them much slack. Too many people go years without the right diagnosis. And all it takes when there is any kind of question is a few tests. In my case I questioned the type 2 diagnosis because of my uncle having type 1. I ate a very healthy diet and swam 75 laps everyday. And was still told by an endo I was a type 2 and he never tested me.
And I would still doubt your type 2 diagnosis @Luis3. Having a low C- Peptide early on is a significant sign of being a type 1. A C-Peptide low or low normal is a sign of type 1 as you are lacking insulin production. A type 2 is insulin resistant and produces extra insulin trying to make up for that. High or high normal is the sign for being a type 2. Less than 6% of type 2’s are deficient in insulin production. And that is after many many years of being a type 2 and their pancreas becomes overworked. However there are type 1’s that don’t test positive for antibodies but cease making insulin and they don’t know why. Our Type 1 Diabetic Educator on our island is one of those. I am having trouble finding the article that talks about the less than 6% of Type 2’s being deficient, I have saved a lot of articles, I will add it if/when I find it. But there is this article that talks about C-Peptide being used to define type 1.
I did not have a low C-Peptide early on. I took nearly 30 years for the over secretion of insulin caused massive Beta cell disfunction. Beta cells were probably dying off earlier.
The non-immune loss of Beta cells is the reason that type 2 diabetes can progress. The reason for the high insulin levels in early T2DM is because of cells resisting the attachment of insulin when they are actually in need of glucose. This causes BG to rise which stimulates the Beta cells to go into overdrive.
After years of T2DM having a low C-Peptide without positive antibodies is in now way type 1.
What causes cellular insulin resistance when the cells should be accepting insulin is written in genes, somewhere between 30 and 70 variants.
Yes, there is a genetic component in T1DM, but it is, iirc, one variant combined with a trigger. The trigger is often a viral infection that may or may not have symptoms.
To compound the issues, there is no reason that a person who develops autoimmune T1DM is immune from having the genetic variants that cause cellular insulin resistance. This is sometimes called double diabetes or type 1 with insulin resistance.
Sorry @Luis3 This is where I interpreted the low C-Peptide early on. I can see where it doesn’t actually say early on, just when you began to see a BG rise and increased exercise and carb restriction you had a low C-Peptide. Believe me I agree just the need for insulin does not mean you are a type 1. But a low production of insulin early on does. I am always trying to warn others to be on the look out for being a misdiagnosed Type 1 because it is still so common and what I went through.
A1C is useful as a broad indicator, but since the advent of CGMs Time In Range (TIR) is coming into more prominence as the most useful measure. Sadly, there’s a lot of lag in adoption of that standard, particularly among non-specialist GPs who see a lot more T2s than T1s, as CGM has only recently started to emerge as standard of care for T2, so the totemic power of A1C has a firmer hold in the PCP’s office.
Have you gotten a referral to an endo yet? Maybe harder to get until you’re actually on insulin but it’s never too soon to push for it once you’ve been dx’d T1.