Getting Type 1 as an Adult - LADA (Latent Autoimmune Diabetes in Adults) with Mila Clarke Buckley

[@nancysatori4744]

It took 15 years! And I finally said, how do you know if you are T1 or T2 ? I can’t get off insulin no matter how hard I try. Then they gave me the blood test, you’re definitely T1! Blew my mind, but also was relieved to find out I wasn’t a failure. I was 35 when I first went to the doctor, 50 when I was properly diagnosed.

[@moniquej9945]

Wow, how's your kidney function.

[@eat3245]

Many thanks to all three of you for this excellent podcast! I'd like to suggest one change: you say LADA doesn't present initially as T1D did for the doctors in adolescence; but that's exactly what happened to me. At 52 yrs old, seriously underweight and dehydrated, I ended up in the hospital with DKA and an H1c of 12.5. In the preceding 5 months, I brushed off my symptoms as menopause, stress, long covid... it never occurred to me that a skinny 52-yr old with no prior health issues could have T1D. It's been a rough six weeks, but the TCOYD videos have helped a lot.

[@TCOYDtv]

If you presented just like me and Jeremy, then you would not be classified as LADA, you’d be typical type 1 diabetes because you crashed and burned. LADA kind of refers to when people present with more milder symptoms, but it’s really all semantics. Thanks for listening to the podcast - appreciate it!

[@angelagray7817]

I am 67yrs and I just found out about 4 months ago that I'm type 1 diabetic lots of disbelief and crying

[@TCOYDtv]

Hi Angela, we feel for you and know what you are going through. There are lot of groups online that can offer you support, including our type 1 diabetes facebook group, and many others. Gary Scheiner's organization called Integrated Diabetes has a wonderful team of people who can give you one-on-one attention and support as well. If you have an interest in coming to an in-person diabetes conference, we will be hosting a weekend conference in San Diego in August just for people with type 1. Dr Edelman says "Welcome to the tribe, and you’re going to live longer and healthier because you got type 1." Feel free to reach out to us anytime if you have questions!

[@tessygreca8683]

Me at 67.

[@DutchCleveland]

Wow.. 4 months ago was peeing every 2 hours. Got a blood glucose test saw 389. (went to pharmacy got a fingerprick test kit) Checked myself into the ER. Three days later I left the hospital with insulin, metformin. Saw endo.. demanded a GCM. (Got one after a month). brought my A1C from 14.7 to 7.1 in 4 months. All normal cholesterol, BP 120/80. never could get off insulin. Just had tests last week. C-pep is 3.4 (so good) but came back with 2 antibody tests that came back last friday. Endo hasnt seen it yet but. Im just waiting for him to conform what I already know. Type 1 (Adult onset) - LADA. I GUESS I did really well with my own care and my doctors. I can keep myself in range 100% of the time with insulin now. Holy smokes this woman is 100% describing my 4 months and why I cannot find this information ANYWHERE. Wow.

[@TCOYDtv]

Yes, common story unfortunately. Good for you for taking the lead with your health and getting the answers you need!

[@dawnhughes4026]

Awesome podcast!!! It’s nice to know….I guess, that it’s not just me and that this is a common issue. I’m hoping that education will help the medical community at large to be more aware of this issue. I’m a nurse and I went for years before I was tested for antibodies. When I finally found out I had antibodies the sense of relief was overwhelming. That was why nothing was working for me. I’m so thankful for the community we have as T1D.

[@TCOYDtv]

Your story is so common...it's very frustrating but hopefully things will continue to improve as more education is shared. And yes the T1D community is awesome!!

[@ThePJmommy]

Thanks for covering this topic. I was diagnosed with LADA about 4 years ago, however my story is different as I was admitted into the hospital where the tests were conducted. I was released with insulin but it took about a month to get all the info back from the tests to confirm that it was indeed LADA. Mila is great! I've been following her for years.

[@TCOYDtv]

That is definitely a unique situation for LADA!

[@joyblom3547]

My Lada diagnosis was so sudden. My HBA1C was 5.4 the December before I was diagnosed, I was normal. Then 6 months later I suddenly got sick, typical symptoms I had dry mouth, thirsty, peeing all the time and couldn’t sleep for more than 30 min before I woke up to pee. My eyes were blurry and I developed a boil on my leg that turned into a giant hole in my leg (that’s actually what made me go to the dr) in passing I mentioned to the doctor about my thirst and she tested my glucose and did a ketone test. She said I had type 2 diabetes and I should go see her in a month… two weeks later I lost a weight, threw up everything, couldn’t get out of bed, was dehydrated, muscle spasms, trouble breathing, I literally felt like I was dying… but thought it was a bad flu or a bad reaction to the medication she gave me for the hole in my leg… I finally went to a doctor (another one because I didn’t want to go back to the other doctor) and could barely walk into her office, I was slurring my words and couldn’t form sentences… told her I had type 2 and was diagnosed 2 weeks ago and needed a drip because I was dehydrated (I thought I would be back at work by that afternoon) she told me to go the emergency room right away… I went to the ER and had no idea my life would chance so drastically. 7 days in hospital later I was fully insulin dependent… It was a week before my 33 birthday.

[@TCOYDtv]

You really went through an ordeal...so sorry. Grateful you found a good doctor who sent you to the ER and you were able to get the right diagnosis. Sadly, it is not unusual for doctors to miss the signs of type 1 in adults. Take good care and thanks for sharing your story.

[@paulpladin9590]

Thank you so very much for this. We have a large facebook group for those told they are LADA or type 1.5 We did a survey in our group and over 60% of the people there were misdiagnosed as type 2 for a significant amount of time. We need more awareness of this. The number of people who were denied further testing (C-peptide and autoantibodies) is scandalous. The first point of contact is the primary care provider and the T1 awareness there is miserable.

[@TCOYDtv]

You're right. It's not a good situation...healthcare providers need to be educated about the nuances of this condition. Good for you for coming together in a Facebook group to connect with others and get support.

[@pamelaann3690]

YES!!! THAT GROUP IS A TREMENDOUS HELP!

[@paulpladin9590]

@@pamelaann3690 Glad we can help. In that group my avatar wears a black cowboy hat and looks like Paladin.

[@leslieober6901]

Wow!! Very informative podcast! I am still in limbo as I have had a dismissive primary care doctor who insisted that I was type 2, despite having zero other metabolic markers, being a healthy weight, and having everything else be normal or optimal range. But have gotten my own c-peptide and diabetes antibodies tests that all point to type 1. Now I have to find a doctor who will listen to me.

[@TCOYDtv]

If you'd like, email [e-mail] and we can see if we know of a good endo in your area.

[@rocquelj]

It took over 15 years, two endocrinologist and a heart attack for me to be finally diagnosed with lada. so many years I was blamed for not getting my sugars under control and it wasn’t until I had a heart attack where they brought my endocrinologist in and the test were run that she then came into the hospital to tell me that I had type one never apologizing for the missed diagnosis

[@TCOYDtv]

That's terrible - so sorry for your experience. Unfortunately there are a lot of HCPs that aren't knowledgeable about LADA, but hopefully more and more are becoming educated.

[@pamelaann3690]

That's terrible! So sorry...thank GOD for my pharmacist...SHE is the one who suggested further testing and said it wasn't type 2. Told me what tests and I was positive. I don't even want to get into my horror story here. I'm traumatized!

[@Donnyboy65]

Lada here, can’t wait for my cgm. I can do this

[@TCOYDtv]

Yes! You will love CGM!!

[@tessygreca8683]

Thank you for sharing. I went from pre to T2 to Lada in a month! Total confusion. Thanks to a cardiologist in my church who said I needed to see an endocrinologist. Acheron the blood work it took 2 months to determine what I had!

[@TCOYDtv]

Yes, unfortunately that's a common situation. Glad you were able to get pointed in the right direction to see an endo, and received an accurate diagnosis!

[@yennyjen5742]

My a1c has been 5.9 the last couple yes.. I recently was checked for insulin and It was 6.. Dr told me I don’t for for type 2.: and I was tested for type1 and lada and came negative. I was check for the 3 main genes for mody and came negative too. I am lost at what to do. My a1c recently was 6.1 and insulin 8 but all the other wellness test were perfect. Metformin it’s not working. Is that normal for type1? I am 34 yrs old, got gestational diabetes at 29.. and been prediabetic ever since. Normal weight.. I am actually on the lower side since I lost a couple pounds while on metformin.. I was hoping my numbers were better but a1c today was 6.1

[@TCOYDtv]

It sounds like we aren't sure exactly what type of diabetes you have, but you do have insulin secretion based on your numbers, and your A1c is extremely low. Do not worry. If your A1c starts to creep up further you can be tested for type 1 again, and there are multiple autoantibodies you can test. You can read more about that here: tcoyd.org/2023/10/i-screen-you-screenwhy-everyone-should-be-screened-for-t1d/

[@Ldyrev1]

Patience doesn't even cut it. I have been type 2 for over 30 years, lost 80 lbs with A1c still over 8.6. Working with a new endocrinologist retested now classified Type 1 at 66 years of age. Now going on a pump and off of 2000 MG of Metformin. There is a light at the end of the tunnel and it isn't an oncoming train. Better numbers are possible and I am so relieved.

[@TCOYDtv]

That's great - so glad you found a new doctor and the right diagnosis after all this time!

[@scgirlygirl8405]

Excellent podcast! I'm going back to my Dr. on Monday. I was diagnosed Type 2 in January. My A1C was so high the machine error out, and I had extremely high ketones. Started Met and Ozempic. Worked for a couple of months, now my numbers are creeping up, and my symptoms (thirst, hunger, etc.) have returned. Is there a possibility that I may have LADA?

[@TCOYDtv]

Your situation is not classic LADA...people with LADA don’t typically present like you do with a blood sugar off the scale of the meter and in ketoacidosis. They generally present with slowly progressive glucose abnormalities. It does sound like you have some type of type 1 qualities though because your blood sugars are going up, and LADAs can present in different ways. There is also a condition called atypical diabetes where people present in DKA and then it goes away for a while but it can come back anytime. You definitely need to see your doctor or endocrinologist, and he or she definitely should measure autoantibodies for type 1.

[@scgirlygirl8405]

@@TCOYDtv Thank You. I appreciate the feedback.

[@cwong6204]

As much as we would want to blame the primary provider, we should also blame the medical associations or doctor associations or whatever organizations are responsible for continuing education of doctors - why don’t they educate the primary providers to order C-peptide and antibody blood tests right at the get go for diabetic patients? These patients are already doing blood tests every three months for their A1C, why not add those two tests on the requisitions?! And it’s not like these tests have to be done repeatedly even if the cost for these tests are high. Just test them once, rule out type 1 or LADA, then move on to the correct regimen. Thanks for the video.

[@TCOYDtv]

With regard to the C-peptide, as you know it indicates the level of insulin production, and it does not help that much to make the diagnosis. The test to order is the GAD antibody test. Your suggestion is good that for any patient in question who has glucose abnormalities, they should measure the GAD. There definitely could be more education for HCPs (we make a point of doing that in our education both for patients and providers), but as you said often it’s the patient that is going to their doctor to ask for the tests!

[@riannair7101]

I was diagnosed with type 2 diabetes 10 years ago(with 400 ml/dl glycemic),and after 10 years of drastic regime but without any drugs (for 9,5 years i was with normal glycemic index 120-135 ml/dl) , now my index glycemic not go down under 170 ml/dl even i fasting or do a lot of sport...so i go for my doctor and after he see my analyze (C peptide with valor 1,26 ng/ml) , she say i have diabetes type LADA and i not insulin resistance at all (only my beta cells form pancreas not produce more than 24% from total) ... so she prescribe me the 10 mg of Jardiance at day , and after 3 days my glycemic index is 103 ml/dl.(i hope i not go hypoglycemic). What is better ? ... do 1 shot insulin at night for 24 hour or go on with that pill Jardiance.(Jardiance have some side effect like develop some issues on kidney , some rare infection at genital zone , etc.). What about modulator therapy (DIAPEP 277 , DIAMYD(GAD65) , monoclonal antibodies anti CD3 ... can help more and efficacy without take pills or insulin shot? I type thin body and 51 year old now , without family history have diabetes). Thanks in advance!

[@TCOYDtv]

You have a complicated case, and you seem responsive to different medications. At this point, you should stick to the one that works the best to keep your blood sugars in a normal range, and obviously you need to speak to your endocrinologist. Sounds like you're doing well though so good luck.

[@riannair7101]

@@TCOYDtv Thank you!🙏

[@ih7942]

Thankfully I was diagnosed properly but it took alot of prodding on my part (my a1c doesnt 'track' to make it more confusing). On a pump and cgm. I wish people understood its not 'my fault', although I'm active and a healthy weight. People assume its lifestyle due to onset age.

[@TCOYDtv]

Yes, it’s unfortunate that there are a lot of misconceptions out there. You should have some fun with it and tell people you ate one package of Hostess Twinkies and developed diabetes within a few weeks!

[@AJ-cd2ox]

I had two, recent, private blood tests. My Fasting Insulin was 'low' at

[@TCOYDtv]

It would be helpful for you to be tested for the type 1 diabetes autoantibodies.

[@AJ-cd2ox]

@@TCOYDtv I'm thinking of paying for a C-Petide test

[@TCOYDtv]

C-Peptide may be a total waste of money. If you're only going to get one test, you should get the GAD antibody test. It’s readily available and your healthcare system should pay for it.

[@AJ-cd2ox]

@@TCOYDtv I'm not sure we do that on the UK. I have been told by others, that I'm very unlikely to have Type 1 as my fasting glucose was only just over the normal. Plus I had only 2 hrs sleep the night before, which can raise Blood sugar too.

[@TCOYDtv]

Your blood sugar has nothing to do with it. You need the GAD autoantibody test, and they are widely available. Good luck -

[@grumpyinbrooklyn6347]

Thre years with A1c over 10% and STILL witholding insulin should be malpractive even if truly type 2!

[@TCOYDtv]

Very true.

[@angelagray7817]

Don't know anyone my age newly diagnosed with type 1 diabetes

[@pamelaann3690]

Problem can be solved if all doctors AUTOMATICALLY kept testing C-PEPTIDE AND ANTIBODIES in diabetics when they are struggling and being compliant. Tests aren't expensive! Stop not believing patients when they say something is really wrong! If mine would have, I wouldn't have so much trauma now.

[@TCOYDtv]

So sorry to hear that you went through a tough experience. It's a big ship to turn around and will take time, but hopefully more doctors are being educated.