Could this be LADA?

Hi everyone!

Love this website, so much information!

Looking for some advice and opinions from the LADA community out there.

Adult daughter diagnosed with Type 2 about a year ago. So I’d been reading about it for a while. Then in February my 21 year old nephew spent 4 days in ICU - Diagnosed with Type 1. Talking with my sister about her son and how he started complaining to her about being so thirsty and his mouth was so dry …then he started complaining about his eyes bothering him…I thinking to myself I’ve been so thirsty and my mouth has been dry and I’m going to the bathroom a dozen times a day, my eyes went wacky the other night while playing a game on my phone and it lasted for about 15 minutes or so. It was a little scary. I made a doctors appointment (I have no insurance).

Doctor looks at me…Huh? You don’t “look” like a diabetic but you are describing the symptoms so let’s get a CBC and hbA1 test.

So more on what I “look” like:

On that day: 103lbs
Height 5’3”
Blood pressure 110/72
BMI: 17.4 underweight
On my feet working 14 hours day easily, I rarely sit down during the day. NOT a couch potato ever in my life. Probably never been in normal BMI range either.

Nurse I assume calls : you are pre-diabetic. You need to go on a low-carb, high protein diet and LOSE SOME WEIGHT!
I started laughing! Lady I weigh 103 lbs and can’t afford to lose an ounce! Obviously you are not looking at my file. If I don’t have carbs I’ll melt away. She said I’m sorry honey but you will just have to lose your excess weight!
WOW! So I say : is this Type 1 or 2? She sighs…type 2 of course-it’s impossible for an adult to get type 1! I ask what was my blood glucose? 94 and my A1c? 5.7. Not bad. You can fix this.

I probably can! Drinking half gallon of raspberry lemonade a day and eating a giant bowl of ice cream almost every night! I did this to myself obviously! I’m just barely prediabetic no problem.

I’ve researched what to eat…now only drinking water and coffee , no white bread, white potatoes, white rice etc. I’ve more than doubled my vegetables, got rid of those breakfast bars and cleaned my pantry and fridge. Only healthy stuff for me from now on.

4 weeks later I’m 95 lbs and look and feel terrible. Obviously I don’t know what I’m doing. I make an appointment with a dietitian. I spent an hour with this lady…she was great. I need to have carbs, a healthy fat, and protein with each meal I eat. 3 meals per day and 3 snacks per day. Keeping carbs below 25g per meal or snack. Showed me stuff to avoid to eat for the prediabetes…She struggled trying to find stuff to gain weight (not something she has ever had to do!) before I leave she says: I don’t think you’re pre-type 2. Have you ever heard of Lada? If you don’t gain weight on this diet then it’s likely it’s not Type 2. Go back to the doctor and demand to be tested! Also invest in a glucose meter and see what sends your blood sugar up. I leave their feeling I have have what I need to succeed.

I made it back up to 101 lbs in the following weeks it didn’t stick …back down to 95lbs.
I feel awful now. Worse than before… Every time I eat I feel awful, exhausted like never before. I feel like I have a 10 lb weight tied to each arm and leg. I have an overwhelming urge to sleep.

Better get a glucose meter.
I’ve been testing…mornings starting at 93. Now I’m up to mornings 115 (within 2weeks)
Spiking at 167 then 172. Seems small amounts of carbs are an issue. Last night had a bad storm I was soaked and didn’t want to shop for food in the pouring rain so ordered a pizza…thin crust onions green pepper and garlic. A spike of 205. Guess I won’t eat that again!!
Husband thinks I’m nuts, I’m obsessed!
I am… I want fix this or figure out what I’m dealing with. I feel like every day my blood sugar is out of range of normal, I’m doing damage to my body.

So what does everyone think? I’m calling and making another doctor appointment on Monday. I just feel lousy all the time and just want to feel better!

Thanks for reading this extremely long post. Any opinion or advice would be appreciated.

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Wow. What exactly does a diabetic look like? I would drop that doctor and nurse immediately, and find an endocrinologist. You don’t have to put up with those kinds of attitudes.

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Love my physicians assistant. But the nurse needs a new line of work! Can’t fix stupid.

PA really listens…I am hoping when I see her next week and mention LADA a lightbulb will light up above her head! She is very empathetic about me not having insurance and won’t order unnecessary testing. But she has always felt that I might have some kind of autoimmunity thing going on. Thyroid tests in 2016 were normal. I don’t see a problem with her giving me a hard time about testing for antibodies and a C-peptide test.

She is guilty of assuming I just couldn’t be a T2D because I’m thin, active, have normal blood pressure and cholesterol #’s are great. As am I! I don’t have any risk factors other than being 54 years old. How could I possibly be!! I learned that thin people can get T2D… skinny fat…maybe I am…I don’t fit in the box. I don’t have that high of a BG . Just having severe symptoms? Whatever is going on isn’t responding to a drastic reduction in sugar and carbs. I thought that this would be easy. Unfortunately I fit quite well in the LADA box… Thankfully it’s early yet and I’ll have a proper diagnosis by next week , one way or the other.
I’ll post my results when I get them.

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I wish you the best Laurie. You’ve got a great attitude about this situation and I hope your doctor can determine the right course of action. This forum is full of great knowledge folks who will give their best advice and will always be hear to listen.

Welcome to the TuD forum @Laurie_B.

If you’re losing weight given your BMI is so low, one would think T1D is the most probable cause. Whether it’s called LADA or some other contrived name, your pancreas is not producing enough insulin.

Why not go to pharmacy and buy either some cheap Ketone testing strip (urine) or a Ketone meter to test your serum (blood) ketones? Anything > 5.0 mmol/L and you have ketones in your system, if they’re over 10 I’d suggest going to nearest ER.

And with that, you can ignore everything this ignoramus says.

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You might ask her if she knows why she’s calling it “type 1” and not “juvenile”— does she know why the nomenclature was changed from “juvenile” and “mature onset” to the T1, T2 designations in the first place? No reason? Just for fun? Sigh indeed.

It concerns me that you say you have no insurance. You need to have the c-pep and antibody tests, but they aren’t free, and hoo boy, insulin sure isn’t.

If it does turn out you have to go on insulin, you can manage with the old-style R & N insulins available at Walmart, which are affordable OTC, but they take some knowledge to use safely. We can help with that. Please do stick around and let us know how it’s going. And welcome to TUD!

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I so think you are probably type 1, that kind of weight loss is so linked to type 1. Your sugars are not in proper range so something is going on. There is so many in the medical field that just aren’t educated enough. Telling someone to lose weight at 110 pounds 5’3" is just absurd.

I had some similar situations, a doctor that said medications wouldn’t work at all if you were type 1, a chiro just a couple of years ago said you couldn’t be a type 1, you didn’t get it as a child. They’re out there, I refused to go back to the first endo and switched doctors and was finally diagnosed right.

And if you are type 1, your sugars are just going to continue to get worse, you will need insulin. If you can get insurance, I would really recommend it. This is not a cheap disease. Sometimes we make decisions on what jobs we get because of the benefits that are offered.

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I believe both manufacturers have programs for free or reduced insulin for those without insurance. Please definitely keep us informed.

Edit: Novo Nordisk’s PAP page is https://www.novocare.com/psp/PAP.html .

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Given your A1c was 5.7 and the pizza got you to 205, It isn’t that bad at this stage. As you said the T1 blood tests will tell more.

If you are reducing carbs, you have to have a bit more protein 70-100g day. and a lot more fat. You can’t do low carb and low fat. Or you will lose weight, even if you have enough insulin. Use a calorie counter for a month to make sure you are getting enough total calories. and google LCHF and keto. Normally overweight t2 have time to get their head around eating fat, Being skinny you don’t have that option and need to read and reassure yourself.

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You can definitely get T1 as an adult, and the majority of T1s have their onset after the age of 20. Unfortunately, way too many of them are initially diagnosed as T2s.

I was misdiagnosed as T2 at age 57, when my fasting BG finally crossed the threshold of 125. I was rediagnosed as T1/LADA at age 59. Before the initial misdiagnosis, when my fasting BG was slowly going up from 100 to 125, about 5 points per year, my doctor told my I was pre-diabetic and to do the diet and exercise stuff. “Pre-diabetic” really means “Pre-T2”, since diet and exercise do nothing to forestall T1/LADA onset.

From the numbers you quote, it there is a significant chance that you are T1 or LADA. The standard way to confirm is with antibody tests, but they are not cheap (which is why doctors don’t do them for all diabetes diagnoses), and not all T1s test positive with them. One would think a C-Peptide test should be able to differentiate between a T2 and a T1, but LADAs still produce insulin so it may be harder.

If you have a way to get insurance, get it. Treating diabetes is not cheap.

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Hello! So hoping you find your answers. I have discovered I ask here and read online to get my answers then approach my endo with questions and sometimes guiding her. She is by the book AMA.
FYI diagnosed Type One at 62. No family history. So yes it does happen.
Took over a year to regain my weight loss of 35 pounds which kick started the dr visits.
I was 110 prior to weight loss so my body organs and my brain had quite an impact. I eat low carb since diagnosis.
I have no insurance either. I was accepted into the NovoCare Patient assistance program.
Diabetes is an amazing teaching dis-ease. Dynamic, variable and requires knowing your vehicle…

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I was diagnosed T1D at the age of 30, likely LADA as it was slow onset. It took over a year from first symptoms before my diagnosis and starting insulin. Doctors often have a hard time distinguishing between LADA, which is T1D, and T2D.

I congratulate you for learning so much so quickly. From this distance, I think it’s likely LADA. A C-peptide test may help a lot with diagnosis. I would push back hard on any physician reluctance to order that test.

Your persistent bias toward weight loss at your already low BMI strongly suggests an essential insulin deficiency - the hallmark of T1D. LADA is a subtype of T1D - don’t let any confusion over this semantic distract your physician.

Your brain, curiosity, and persistence are your main allies at this point. Good luck!

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Regarding lab tests …
We have good insurance and my husband looks carefully over the bills and statements. Insurance payments to the lab are ridiculously low compared to the “list price.” They often pay 15-20% of the original bill, or even less. I mention this to suggest maybe it’s possible to make a deal with the lab? I’ve never tried it, but has anyone gone this route? I don’t see any reason you should pay five times as much for the same tests, just because the insurance is paying for it. Good luck.

I used to pay cash for all of my blood tests and my local clinic has a policy that if you pay up front they will cut the price in half. I had a c-peptide done a couple of years ago for about a $100. A1C’s were routinely less than $40.

Thanks so much for all your helpful responses.
Looking into insurance…going to be about $416 a month-my portion, government portion $344. So policy is actually $760 a month. $5000 deductible. I don’t have much of a choice at this point. Have to wait till first of the month to kick in . Meaning September 1, I think. Still going to have pay for this dr visit and lab work. Dr office and lab both give 50% discount with smiling faces!! I paid $77 OV and $76 for an a1c and CBC. Up front…

I ran to CVS and got ketone strips as suggested. Last night…it shows ketones are present 5-10, maybe. Ahh , so difficult to match the color! Tried again after lunch-today definitely shows ketones 15mg/dl . Haven’t read much about this yet. What exactly does this mean? Color chart says small amount.

Just an FYI: I live and work 4 minutes tops from an emergency room, comforting feeling… my dr office and lab there’s an Endo in the same building. From online reviews of this guy, he is well liked- a T1 since he was 6. Looks young in the picture 40’s. His office staff may have death threats (kidding) Nasty, rude, unhelpful witches. Some people refuse to return because of them. Hope things have changed. Also 3-4 months to get an appointment. Next closest Endo is almost an hour away due to heavy traffic. They get great reviews also.
I love you guys already! But I’m praying This isn’t T1. Even my husband is beginning to believe there’s something other than T2.

Also I’ve seen people mentioning Mellita? Has some great explanation of different things… where can I find this information? Can someone send me a link?

Thanks again-Laurie

Welcome aboard Laurie!!!

Concentrate on the “fix it”, not finding out what you are dealing with. I was diagnosed 30+ years ago and have been treated at Joslin- Boston one of the if not the foremost clinic in the world and after all these decades they are still unable to type me as I don’t fit into any of the currently categorized Types 1,2,1.5,LADA,MODY etc.

Like you I am on the thin side for a 70+ year old 5’ 10" male with an 18.5 BMI, Low to normal blood pressure. Started on oral medications and fairly soon thereafter went on to insulin to have a lot more eating options. I have done all the tests and the more tests that come along, the more confused the doctors are as they say they don’t have any others at that huge clinic that meet my profile. All we know is that I have a high intolerance to carbohydrates and can keep in perfect control with a Constant Glucose Monitor and multiple daily insulin injections. and I eat, dose insulin and exercise according to my CGM and digital scale for weight.

Need to gain weight? Nuts are your friend. Chopped walnuts, Almonds, etc have about 190 calories to 4 oz serving. Sometimes I throw some chopped walnuts into the peanut butter jar, shake jar to embed nuts into peanut butter, squirt a little whip cream on the nuts and scrape the top layer to get back down to the peanut butter. That little snack can quickly amount to 600 calories. Twice a day and you will gain weight pretty fast. I can give you plenty of other tips if interested.

An update:

Just had my dr appointment to get tested for T1. She listened to everything I had to say. She had never heard of LADA! Scary…I told her about a c-peptide test and at a minimum the GAD65 test if not all the possible antibody tests. She knew what the c-peptide test was. But didn’t know anything about antibody testing. She left the exam room to go into her private office to look it up on her computer. Came back in less than 10 minutes and said: oh yes! I totally agree with you! I will be surprised if you are not type 1. And while she was looking it up she said another doctor came in her office and asked what she was looking up. She asked if they had ever heard of this LADA? Other doctor said as a matter of fact I just ordered tests 2 minutes ago for the same problem for someone else! Hurray!! Told her what tests I needed.

Had blood drawn for these tests:

C-peptide
Another A1c
Glutamic Acid decarboxylase ab
Insulin free & total

I should have results in about 3 days…
She said if the GAD65 test is positive I will be referred immediately to their endocrinologist and started on insulin most likely right away.

The 2 doctors decided testing for all the antibodies probably wasn’t necessary at this point, this was the most likely one. If it’s negative but C-peptide or the insulin test aren’t good then they will order the other antibody tests to be sure they haven’t missed anything.

I asked about having to wait for an appointment with this endo For 3-4 months. She said no worries a new endo is starting within a week and he has NO patients so I can get in right away.

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Great news Laurie! You went to appointment prepared and your doctor(s) are on board - gotta love that :hugs:

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Yes…feeling kinda happy/sad
Thank god im not working today, trying not to cry

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