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

Mila Clarke Buckley—or as you might know her, The Hangry Woman—is joining us to talk about LADA (Latent Autoimmune Diabetes in Adults), which is just a fancy term for getting type 1 diabetes as an adult. Mila shares her story of originally being misdiagnosed with type 2 diabetes and how she had to advocate for herself to get the correct T1D diagnosis. As 50% of people diagnosed with type 1 diabetes are actually adults, it’s important to know the symptoms of LADA to make sure you are diagnosed correctly. 

Taking Control Of Your Diabetes® - The Podcast!
Episode 26
April 23, 2023

[nancysatori]

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.

[eat]

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.

[angelagray]

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

[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.

[dawnhughes]

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.

[paulpladin]

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.

[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.

[leslieober]

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.

[joyblom]

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.

[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

[tessygreca]

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!

[yennyjen]

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

[scgirlygirl]

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?

[Donnyboy]

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

[Ldyrev]

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.

[riannair]

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!

[cwong]

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.

[AJ-cdox]

I had two, recent, private blood tests. My Fasting Insulin was 'low' at <2 and my fasting glucose was 5.68 mmol / 102 mg/dL, which apparently is prediabetes, but according to my lab (range 4.1-5.9) I'm ok.

My HbA1C in February was 32mmol / 5.1%.

I'm worried I have Type 1 Diabetes or LADA. I'm 43

[ih]

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.

[grumpyinbrooklyn]

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