Type 1 or LADA?

Type 1 and LADA
1

Hello all. I am new to all of this- diabetes and this site. My husband was diagnosed as Type 1 last month. Since then, I have heard people use both terms 'Type 1' and 'LADA' in describing adults with a similar diagnosis. I have researched and researched and still find conflicting information on the two. Is there much of a difference, really?

A quick recap of my husband's story: He has always been underweight. When we married 5 years ago, he was 135 lbs and just under 6'. He eats like a horse, but *never* gains weight. In the last 6 months, he continually lost weight- 19 lbs to be exact. We chalked it up to any number of things- changing to a more sedentary job, stress, etc. It was our first clue. In that 6 months, he began to exhibit all the symptoms of diabetes. Lethargy, extreme thirst, and thus frequent urination. It came to a head in July, when I woke up one night to find him drinking 5 water bottles full of water, and was still thirsty. I called the doctor the next day, something in my gut telling me diabetes. She laughed. He's nearly 6' and weighed 116 lbs. He's 29. He's not diabetic. The first blood test came back with a FBG of 312, a1C of 12.9, and a surprising LDL of 1161. She tried him on Metformin for 2 weeks, watched as it did not one single thing, and we were sent to an endo. Our endo is fantastic. She started him immediately on both basal and bolus insulin and his antibody test (not sure which one yet though) came back positive. Endo told us he had very little insulin production left. Husband has no history of diabetes or any autoimmune disease in his family, and absolutely no other health problems. Until last month, he had been in seemingly perfect health, and had not even visited a doctor in years.

For all you pro's out there, and experienced diabetics- is it possible to get Type 1 later in life without it being LADA? Or is LADA just the term used for Type 1's who are diagnosed later in life? From all I've read- and please correct me if I'm wrong- there are differences as far as how quickly the diabetes progressed (usually being classified type 2 for years and taking oral medication for years before needing insulin), or having other autoimmune diseases.

Just new and confused....

2

Hi Brooklyn: Your husband has Type 1 diabetes. LADA is a name given to slow-onset Type 1 diabetes. And yes, it is possible to get Type 1 later in life without it being slow onset (Mary Tyler Moore was diagnosed at 33, I had rapid-onset Type 1 at age 35). The definition of LADA is a bit nebulous and confusing, but the Immunology of Diabetes Society proposed that patients be ≥30 years of age, positive for at least one of the four antibodies commonly found in type 1 diabetic patients (ICAs and autoantibodies to GAD65, IA-2, and insulin), and not treated with insulin within the first 6 months after diagnosis. The latter requirement, although admittedly subjective and likely to vary depending on the treating physician, is meant to distinguish LADA and type 1 diabetes occurring in patients >30 years of age.

3

It sounds like type 1. Over half of all type 1's are now diagnosed as adults.

I was diagnosed last year at 50 with similar symptoms. I had physicals every year and my fasting BG was normal. Good, non obese BMI. Suddenly lost 15 lbs in 2 weeks, ravenous thirst, constant urination, very tired, blurry vision...all the classic symptoms. Went to the doctor and BG was 500, spilling glucose and ketones in the urine, etc. Got quickly to an endocrinologist and was found to be antibody
positive. Put on insulin immediately.

See this Wall St. journal article ... too many adults are misdiagnosed as type 2 by clueless doctors who think any adult diagnosis must be type 2.

Yes, it is possible to be type 1 later in life without being LADA. Many of us did not have any history of autoimmune disease or diabetes in our families either.

See :
WSJ Article

The good news is it sounds like your husband was diagnosed correctly quickly and is under treatment. Now there is just a lot of learning for the both of you, but have confidence - he will feel much better and soon life will be closer to normal again.

Don't be afraid to change endocrinologists until you find one that you and your husband can work with and helps you get back to living your life. If you live near a major diabetes center, consider going there... frequently they are on top of the latest treatment and technology.

4

Your husbands story is remarkably similar to mine, and we were both diagnosed at the same age of 29, just a few months apart. I lost about 30 of my 185 lbs rather quickly, despite eating like a horse. I was also perplexed by the LADA concept and if / how it related to me. In the end, I concluded that for me, it was largely wasted thought on the subject. I have type 1 diabetes, so does your husband unfortunately, and the only treatment is insulin-- I slowly came to realize that in the grand scheme of things it didn't matter much if it onset more slowly or quickly than other peoples' cases. I'm about 6 months into this-- and am about the same age and health history as it sounds like your husband-- I hope he joins this site too so that he can conmmunicate with others in the same shoes-- he's in a pretty stressful situation, and this network has helped a lot of us by connecting and learning from others who can relate.
Sam

5

You are exactly right. LADA is Type 1, but it is a form which comes on later in life and specifically it comes on more slowly. Yes, it is possible to have more traditional Type 1 later in life. Melitta who has some great blogs on type 1 in adults, is an example of this. She had sudden onset type 1 in her 30s. But more commonly people diagnosed later in life are LADA which stands for "latent autoimmune diabetes in adults". Being "classifed as type 2 for years and taking oral medication for years before needing insulin" isn't exactly correct, however. I'm an example, I'm a LADA/Type 1 and I was diagnosed at age 58, but I was misdiagnosed as Type 2 - antibody tests would have shown I was in fact, type 1. I was, actually on oral medication for 15 months before needing insulin, but common belief is that if someone is known to be LADA/Type 1 they should be started on a small dose of insulin right away to preserve beta cell function.

I explain about LADA if anyone is interested, but at this point 5 years in I simply think of myself as Type 1.

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Melitta- Thank you very much for that clarification! I appreciate it.

HPNpilot- Wow, after reading that article, I realize my husband and I are very fortunate. I can't imagine struggling with a misdiagnosis for so long. We only had a few weeks before we got a correct diagnosis. Our primary doctor first said he was Type 2 purely because of his age, but kept telling us she wasn't sure. Our dietitian refused to start us on Type 2 classes because she was sure he was Type 1. Finally, our primary agreed to send us to an endo to treat it further. We lucked out with our endo. She is absolutely fantastic. The largest diabetes center is 2 hours away, but if things change, we will definitely look into transferring care there. We actually see our dietitian again in the morning and hope to start education classes soon.

Sam- Crazy how alike your situation is with ours! I was thinking the same thing- if your pancreas no longer produces insulin because your body attacked it- it doesn't matter how long it took, it sucks all the same. My husband (his name is Loren) copes differently than I do. I tend to research until my eyes bleed and then research some more. I like to know all the ins and outs, the history, every treatment available, etc. Loren isn't as obsessive :) Granted, its been more overwhelming for him, and feels like he's just lost control of his life. He just is waiting for the time it will stop consuming our thoughts and lives every day. I'm hoping that day is soon.

Zoe- Thanks so much for clarifying! If you get there quickly or slowly, its all the same disease.

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Hello Brooklyn,

I just wanted to say that when I read your post I was really kind of moved how you are so involved in your partners new illness. In one of your replies you wrote "...your situation is so similar to OURS.." and you also seem to be incredibly eager to find as much info as you can get about diabetes. I m sure with your attitude you probably think of this as totally natural which is fantastic, but not everybody would react as you do and since I am newly diagnosed myself also with a very caring and involved partner I can tell you it is such a fantastic feeling when someone is just there and has the attitude of "being in this together". It s more important than any other support. Keep it up and all the best of luck for you BOTH ;)
(sorry if there are some mistakes in the writing, english is not my first language.)

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Hi there! Type 1 can happen at any age. Since 90% of diabetics are type 2 I believe most primary care doctors just assume that's what people have. I had a very sudden onset at the age of 57. 35 lb wt loss, thirst, frequent urination, and muscle pain. My primary care put me on Metformin with no effect. Within 3 days I was taking Lantus and Humalog but didn't have the lab work for 6 weeks confirming I'm type 1.

9

With all the misdiagnosed type 2's counted in it is actually more like 75% type 2, 10% type 1.

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Julez, your english is perfect :) Thank you very much. I can't imagine just expecting him to deal with this on his own. As soon as we got the call with his diagnosis, I cleaned out all our cupboards and fridge and have had the same dietary changes he has. I can only imagine how difficult diabetes is to deal with, but watching a loved one deal with it is incredibly difficult, too. I'm glad you have such a good support system!

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Zoe, I think you meant to write 75% Type 2, 25% LADA/Type 1 (LADA about 15%, rapid onset Type 1 about 10%). [My apologies to all those with monogenic diabetes (aka MODY), which is also so commonly misdiagnosed and undercounted.]

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Oops! Thanks for reading my mind, not my words, Melitta!

13

I agree with everything she said. Probably the most frustrating thing about the whole situation is just the total lack of understanding and the widespread misconceptions surrounding the issues he'll be dealing with. Support of a spouse can go a long way. Being actively involved in keeping track of what type of foods he does well with, and learning how to be an expert carb counter yourself are probably ways which can help a lot right away... the rest will take time to figure out-- there may be times where the best support you can give is to give him a little space and let him sort things out himself, or maybe not-- we're all different

14

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I don't know where my reply went. This discussion is very interesting to me. Thank you all for posting and sharing. I am still trying to learn and make sense of this.

I was sudden onset, May 18, 2011. I was 52, slender, and a very frequent dancer, and an active mother of a fourth grader, who used healthy foods and lifestyle. Other than a fairly recent fall which caused a broken arm, I had been extremely
healthy and was often mistaken as being much younger.

They called it diabetic keotacidosis, but they say I died before that happened...and that I may have had a virus or an infection, that was never clear. After 18 days in the hospital, many, many things happened, but the release summary says that I was diagnosed as a new case of diabetes, and my kidneys failed, that was after my breathing was so shallow that they intubated me and my heart stopped and I developed pneumonia that went away during my 8 days of ICU and medically induced coma, and that I had a hypoglycemia so they didn't do the long acting insulin but gave me eleven prescriptions, and the list went on.

They basically told me over and over that most people don't survive what happened to me. I had a neighbor who died 5 times at the same hospital, in April of this year, and he didn't make it. left four kids and was a slender, healthy man. Another woman who is a friend of a friend, died last month of what may have been west nile, but that wasn't clear either...her young son has autims, she was 50. Now, 16 months later, the only thing that seems to have stuck in my situation so far is this diabetes...

To be brief, I am still wondering if there's a viral link? This morning, this article popped up in my mail about a respiratory virus that makes kidneys fail. Do any of you have thoughts on this? Similarities? Strange coincidences? I'm curious. Here's the link... I hope it comes through. It's called New Respiratory Virus in Middle East Closely Linked with Viruses in Bats and other Animals.

http://www.huffingtonpost.com/2012/09/28/respiratory-virus-bats-coronavirus-middle-east_n_1922868.html#es_share_ended

16

You can get type 1 at any time during your life. Many of us believe that LADA is in fact T1, just slow onset. As adults, perhaps our immune system is more "moderated" so the autoimmune reaction which is so damaging takes longer. I hate to say this, but it is possible that your husband was always LADA. He may have had diabetes for a decade and that would explain why he was so thin. After all, he had not visited a doctor in years. If you don't have insulin, you cannot accumulate muscle or fat.

There are people who think that T1/LADA can happen when something "sets off" the immune system, a virus or infection or an allergy. Dan Hurley in his book "Diabetes Rising" talks about some of this.

And as to you question, some adults have a very sudden onset of T1, while others may be slow onset LADA's who may take years before they actually need insulin.

17

I'm glad you are ok. Kidney failure is actually a complication of DKA and is very serious. But I doubt the virus you had was the direct cause of your kidney failure. It may well be that it triggered your onset of diabetes.

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Thanks for your opinion.

They put me on round the clock dialysis while I was in the coma and for several days after, but then they gave me at least ten bags of blood (according to the huge bill) because they said my blood was "too sticky", even after many rounds of the ultra-dialysis, which feels like you are in a refrigerator for about four hours at a time. The kidney, heart, hospitalist and a whole bunch of other docs didn't know what triggered it. One doc who was Indian said that my vitiligo was autoimmune related, so the whole thing may be autoimmune, but then he also said that the diabetes might just go away too! He's the one who gave me some very not normal prescription which the other doctor took away as soon as possible.

It has been a mystery.

However, just last month, I met a veterinarian who said that two other vets who worked at the same place were diagnosed about the same time, in the spring, with type 1...this was the same place where I had taken my dog who had very similar symtoms to me almost exactly a year before I got sick. I think that unusual hot weather is a trigger...that a virus may also come into it, and that animals as well as people may be affected. The dehydration is exhausting, but the virus may interfere with the body being able to get enough hydration...perhaps, or some other twist of fate.

I could be wrong, it may be crazy, but sometimes crazy makes sense to some!

J

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Hi Joni: I am so sorry for all you went through! What a horror story. You are clearly a fighter, because otherwise you would not have survived.