How did you find out you had Type 1.5 or LADA?

Type 1 and LADA
1

Today, through this online community, I discovered that the label, “Type 1.5 diabetes” exists. I also discovered the acronym, LADA (Latent Autoimmune Diabetes of the Adult).

Though I was diagnosed Type I about 16 years ago at age 35, I’ve never fit the mold of Type I (juvenile onset - as defined by some people), and definitely don’t have Type II. So, I just did some internet research on Type 1.5. It’s possible that’s what I have, and I’m considering whether or not to ask my primary physician for a referral to an endocrinologist.

As a result of today’s research I now know about tests for…
“certain autoantibodies against insulin or other components of the insulin-producing system such as glutamic acid decarboxylase (GAD), tyrosine phosphatase, and/or islet cells” (I got this from, www.diabetesselfmanagement.com, after searching that site for “Type 1.5 diabetes”).

Just in case you don’t know, the above tests are used to determine a person’s type of diabetes - and perhaps other things. I wonder if it might be a good idea for me to be tested, since I have other health issues that indicate autoimmune dysfuntion. But, even if something is found, what more can actually be done about it, than I’m already doing? (Duh, ask my doctor.)

If you have Type 1.5, I’m wondering if you have a history similar to mine… Prior to developing diabetes I was hypoglycemic for years, and my doctor told me that I may end-up diabetic, based upon seeing a pattern in other similar patients (he was an older doctor and had much experience to draw from). He didn’t know the cause, he just knew what he’d seen, and advised that I be as good to my body as I could, to forestall diabetes (primarily avoided sugary foods and ate in-between-meal snacks with protein - nuts, cheeses). Not that I was so perfect at it — unlike people with other types of food restrictions, like food allergies, I didn’t get immediate serious reactions to the less-than-ideal foods, so didn’t develop a good sense of what was best for me.

I began seeing an endocrinologist some time during the next two years. Within three or so years I knew something had become seriously wrong. Though I knew the symptoms were diabetic, I tried to rationalize them into something else. Over a timeframe of about 3 months I got to where I…
– drank at least a couple gallons of liquids each day (with considerable numbers of bathroom breaks),
– was always hungry and always eating,
– yet lost weight that I couldn’t afford to lose (I had always been told to drink lots of milkshakes to get my weight up),
– seemed to always be in a mental fog and deeply weary,
– wanted to sleep, but had to work,
– ached all over like an old person,
– and those around me noticed I became very irritable.
Though I knew better, I hoped I had cancer and would, either, be cured or die. I didn’t want diabetes in the worst way - particularly after seeing my mom’s cousin slowly, over many years, die from it - lost limbs, mobility, eyesight, kidney function.

When I finally went to see my endocrinologist, my BGL was 400-something. He started me right away on an oral medication to see if my body would react positively (bring down the numbers). I immediately got my first glucose meter and followed the doctor’s instructions as though my life depended on it - and it did. At the end of two weeks, after gradually increasing the med dose to the max, it was apparently not working. I began insulin injections and was told that I should feel much better in a few months. I didn’t.

The thirst, hunger and weight loss stopped (I had gotten skeletal, at 130 lbs & 6’1’ tall), but I never did regain my energy or get over the body pain. About a year later I was diagnosed with hypothyroidism for which I continue to take medicine. And, within a short time after that I was diagnosed with fibromyalgia by a rheumatologist. Oddly, my endocrinologist never suspected fibromyalgia, always saying that I should be feeling better once my glucose levels came down and stablized. They came down, but I’ve never had the pleasure of normalized, stablized blood glucose levels.

As I’ve incorporated new techniques of diabetic self-care when new information has become available, it has never been enough to bring me frequent, ideal, BGL levels. (My last A1c was 8.8, and has never been below 7.2) My basal/background insulin dose and my carb-insulin ratios are identified in general (but don’t always work), I do my best to count carbs whether cooking or eating prepared foods, and factor-in the glycemic index of my meals and snacks, activity level, timing of food, any illness, tension/stress, etc…

Do you any of you have similar idiosyncracies? How do you deal with them?

2

HI
It has been interesting reading what you both had to say and seeing myself. I too was hypoglycemic for years. There is a lot of diabetes in my family, but because of the hypoglycemia, never thought that i would ever be diabetic. I had “kidney problems” for quite a while as well as blood pressure problems and was seeing a nephrologist. I received very poor care and went to see an internist. I saw her regularly for almost two years and kept telling her that I felt very bad. She said I was fine and kept adding another blood pressure med to the list I was taking. I saw an endocrinologist and she ran several thousand dollars worth of tests. After waiting for 7 weeks for the results, she finally talked to me and told me that everything was abnormal, but she would treat nothing. She said to make another appointment and come back in to see her. By this time, my frustration had reached it’s limit. I finally made an appointment with a family care doctor and am so glad I did. He is wonderful. He ran some tests of his own because he couldn’t get the reports from the endo… He called me back in and told me I was diabetic. Big surprise. He also told me I was in kidney failure and referred me to another nephrologist. The new doctor wanted to send me to another endo. I refused. He wanted me started on pills, which we did. They didn’t work, but made the kidney failure worse. We tried Byetta. My kidney failure got worse. I went back to the family care doc and he said we needed insulin and some more blood work. We did it and the antibodies were positive. He is very patient, very knowledgeable, kind and very, very thorough. With him, I have done so much better. It has taken time for us to find what all works for me, but he has been with me every step of the way. As a nurse myself and having two type 1 kids, the diet was not hard at all. We had been low carbing basically for years. And my son has been the best teacher for the insulin ratios as well as the exercise. Unfortunately along with the diabetes I have another autoimmune disease as well, arthritis. I have a lot of difficulty walking, but am determined not to quit. The pain has been a huge hurdle. The bone spurs look like something you would see in a monster movie. And there is almost total destruction in four of my vertebrae. You know what they are supposed to be because of where they are located in my spine. It is just that they are all mashed together and curve badly to the side. The spurs on my spine are about 2 inches long and now there is one on my right tibia and the meniscus in my right knee is gone.
Diabetes wise, i am doing very well My primary care doc told me I needed to get some omega 3’s in me. Due to severe allergies to shellfish and fish I was unable to take the fish oils capsules and my tummy does not do well with olive oil. So he had me start using ground flax seed. Also with the kidney problems I am unable to eat very mcuh meat. So I was. deficient in the protein as well as the omega 3’s. We started me on a low carb whey protein which does well for me. It has taken me a full month, but I can tell a tremendous difference in the way I feel and in the amount of insulin I have to use. My blood sugars are great and my A1C is 5.6 . I use both Humalog and Lantus shots. I just saw my primary care doc yesterday and he was his usual thorough self. He checks everything as well as injection sites and my feet. He ordered more blood work and will call me when it comes back in. It may be very late at night when he calls, but I know he will handle it. He also asked to make sure, but my visit to my cardiologist is next month for my Echo cardiogram and EKG. I feel like I am very well cared for by a vey intelligent doctor. He has a lot of diabetic patients and tells me there are no dumb questions and there are no two diabetics alike. He says it always makes him smile to find the right combination for each person. He thinks we are very intriguiging puzzles and hopes that real answers come soon for all of us. I encourage you to try the ground flax seed and the protein supplements. I use an EAS whey protein powder that gives me essential amino acids. I suggest the golden flax seed, whole that you grind yourself for freshness. I use 6 tablespoons a day, but I need the omega 3’s. The amount you use is up to you. And you will probably need at least a month to really see the difference. If this is helpful for you, then I am glad. Good luck to each of you.

3

Teresa,

I too have LADA and hypothyroidism. I’ve been diagnosed with diabetes for a year now (diagnosed at 23) and hypothyroidism for 9 months. I can’t imagine adding fibromyalgia to the mix. I do know what it’s like for the doc to say you should be feeling better based on my BS. I’ve done a lot of research on hypothyroidism and it seems most patients remain fatigued after treatment. It’s hard to factor out life, stress, work, etc., but I know I am much more limited in what I can do now that I have these diagnoses.

I obviously don’t have any answers for you, I just thought I’d let you know you are not alone with this feeling. What I’ve been working on is accepting a new me. I got a scholarship to college for lacrosse and used to run 5 miles every morning. Now, 10 minutes of cardio is too much because of how my body reacts. I hope that will change, but for now I’m working on getting to know who I am with these diseases and how I can grow from all of this.

If nothing else your story is more support to the idea that medicine is just as much a theory as any other field. Unfortunately you had to find that out the hard way.

Best of luck!

Kim

4

I have Type 1.5/LADA. I was diagnosed 4 years ago this June; I was 23 years old. I was blessed because my NP couldn’t figure out what was going on w/ me. The medication for Type 2 worked well for me but my pancreas was more like a type 1. I wasn’t over wt 130 pounds, 63in tall. She sent me to an Endo 2 weeks later and before I cold open my mouth he said I bet you have Type 1.5/LADA. He did a GAD65 and he was right. I have never had any diabetic episodes. I was taking oral medication up until Jan 0f 2008, antibodies are killing my pancreas. My honeymoon phase is over. Tuesday I go to my Endo for training on the Omnipod system. He was shocked when I walked into his office…he said most people w/ LADA is over the ago of 40. I am always an exception to the rule. My Endo also told me that I have Hashimoto’s thyroiditis .

5

The funny thing that I read as we each post on here is that all of us have or had a thyroiditis resulting in a hypothyroid condition… Just one more way we recognize each other.

6

I was the only diabetic in my family when diagnosed-- type 1 or type 1.5, diagnosed at the age of 21. Everyone in my family was shocked at the diagnosis, but EVERY woman on both sides of the family has autoimmune hypothyroidism (Hashimoto’s thyroiditis). My thyroid still seems to be functioning normally, but my endo did a test for autobodies against the thyroid-- my level was 100 times higher than normal. So I’m headed for hypothyroidism too. Now my autoimmune diabetes makes slightly more sense!!!

My father was just diagnosed as “mostly likely type 2” at the age of 50. He seems to be responding to low carb diet and metformin. But as I hear his numbers creeping up, I wonder if he is LADA. It’s interesting to read all of your stories! Thank you for sharing. It helps me know what to look out for with my dad!

7

I’m just getting back into reading all of your responses… Thank You! I am so amazed at how we have the ability to “meet” over a common topic and share our experiences, find commonalities, learn from and encourage one another, and know we’re not alone. (We can find God’s blessings in the most unusual places.)

As I ponder this, the technical aspects of how we even got this means of online/internet communication come to mind. Just begin to consider all of the research, design, and development that has gone into making useable software, electronic and electrical circuitry , video and audio components, modes of transmitting digital voice and data signals - that all work together (some times better than others) so we can sit at our computers and communicate like this with people we would have never considered having the opportunity to communicate with a decade or so ago. And, the means of communication aren’t limited to only one form, to only one place (like a telephone call). We can type, speak and visually communicate to, potentially, multiple thousands of people at one time, or, only to a few that we choose. That, beyond-words, amazes me! Yes, yes, I know I diverge from the topic of Type 1.5 Diabetes. It comes naturally, particularly because my good husband is a self-professed “techno-geek” and makes his living, as such, out of our home office. I guess I’ll finish this paragraph by saying that I’m very thankful for those people who are technically skilled and keep making better ways for people to communicate.

Anyway, thanks again, to each of you who are sharing your experiences and knowledge. I appreciate knowing I’m not a pure oddity in the diabetic world, and hope that what I’ve shared so far has helped someone else. Blessings!

8

A very interesting discussion! Both my mother and her mother had hypothyroidism. I was diagnosed with Type 1 diabetes (after a brief misdiagnosis as Type 2, despite being athletic, thin, no risk factors, and being in DKA and hospitalized) and shortly thereafter diagnosed with Hashimoto’s Disease. I was 35 years old when diagnosed. One statistic I read is that by age 40, 80% of women with autoimmune diabetes also have autoimmune hypothyroidism (Hashimoto’s Disease). And for the record, the vast majority of new-onset Type 1 autoimmune diabetes (whether correctly diagnosed or misdiagnosed as is so often the case) occurs in adults. We are not oddities, we are the Vast Majority. If only the medical community could lose their myopia that Type 1 diabetes is a childhood disease…

9

On December 2, 2007, I went to see my doctor for “male problems”. I was otherwise asymptomatic (had no other issues). My doc did a blood draw for a testosterone level check, and a routine blood workup. My testosterone was fine, my sugar however, was significantly elevated. I was told to come in for follow-up testing, specifically, an HbA1c. My initial A1c result and diagnosis as a Type 2 diabetic came on December 20, 2007. My initial A1c was 13.4. I was started on metformin immediately. I had started to lose weight in April of 2007. By the time of diagnosis, I had lost 40 pounds. Over Christmas week, I ate like a pig (as usual on Christmas day), and still managed to lose a pound.

My doctor maxed me out at 2000 mg of metformin within 3 weeks. I was aggrivated, because my numbers were still high, and rebounded back up within days of having my metformin raised. The day after Christmas, two things happened. #1, I quit smoking. #2) I was searching the net, and ran across another diabetes forum site. With the help of the resources there, I was informed of the questions I should be asking, because things just didn’t add up with my diagnosis.

At my next visit, I requested my doc put me on insulin until we could get my blood sugars under control. She said ok, without hesitation. Then I asked her… what was my GAD antibody test result? She looked at me like I was crazy then she remembered, ‘oh yeah, he’s an EMT.’ Her response floored me… “Only and Endo would request that.” My response was an emphatic… “Then I want an Endo.” Surprisingly, she immediately said… Ok.

On the advice from my friends at the other forums, I already had picked an Endo before I even went to see her that day. However, it was going to be 3 months before I’d be able to see the Endo for the first visit. Thankfully, I had already requested diabetes education. When I went to see my education nurse, she begged me not to wait to see an Endo, and offered to see how quickly she could get me in with their Endo instead. She told me she didn’t think I was a Type 2 at all. I was 34, so I could have been by age (which is the sole reason my Primary Care Physician had diagnosed me as Type 2), and I only weighed 180 pounds. I was fit and really looking good. I agreed. I just wanted to see an Endo… I really didn’t care who.

I saw the Endo at that office on the Friday of the same week. He looked over my chart, and agreed with my PCP, I was a Type 2, but he agreed the GAD test should be done. On January 28, 2008, I went back for a follow-up with the Endo. He told me my GAD antibody results were “literally off-the-charts” high, and that there was no doubt I was a Type 1. He referred to it as Type 1 LADA. I’ve since come to find that LADA is generally known as Type 1.5, so I’ve adhered to that on any forums that offers it as a choice.

Everyday I thank God for the other diabetes forums I ran across after Christmas. I truly feel they and my diabetes educator saved my life. I hold no ill will towards my PCP. She was only doing what she knew to do. Oh, and yesterday, I celebrated 6 months smoke free! :slight_smile:

That’s my diagnosis story. Since then, I have also found out that I have hypothyroidism (Hashimoto’s thyroiditis). Thankfully, I already have an Endo, so that’s being taken care of as well. Currently, I am having issues with insulin resistance as well. I am certain it’s due to the 60 pounds I’ve gained since I quit smoking and started on insulin. Hopefully I’ll work most of it off over this summer and with the increase in my thyroid meds. I am very agressive about my treatment now, so I’m hoping my next A1c will be in the low 7’s.

10

I don’t remember the details very well, but when my diagnosis changed from Type 2 to Type 1 I was a little pissed off and thought that I’d been misdiagnosed at the beginning. But I did some reading, learned more about LADA and found out that my course was pretty common.

I’d had the three P’s for a few months and suspected I was diabetic because my wife, a pharmacist, told me that those were the indications. She also said “But you’re not diabetic.” That’s because, probably, that I’ve never been overweight.

After the initial diagnosis, in January 2001, I was on metformin and glucophage. I got an endo right away who told me my pancreas was dying and I’d likely have to start insulin within a year. As my BG’s failed to improve and tests confirmed that I was producing less and less insulin, she kept trying to get me to go on insulin because the pills weren’t working and I was too thin to be told to lose weight, but I stubbornly refused. Why? The usual reasons - it meant I had failed, it meant I was a ‘bad’ diabetic, yadda, yadda, yadda. Meanwhile, the doctor changed my diagnosis to Type 1. After yet another awful A1c, I gave in. My endo practically hugged me, she was so happy.

It was after that that I learned about LADA or Type 1.5.

11

heh, you sound exactly like me, except I had a hospital visit. I quite smoking too and just wanted to let you know after getting myself in order I had started to gain weight too, part of the problem had been I was used to eating large quantities of food before diagnosis, but part of it had been I was taking to much insulin. Once I got my dosages correct with basal testing and such I started to loose weight again and continue to do so.

Can you skip breakfast and not go low?

12

Hshimoto’s is not unusual for Juvenile onset either. I was diagnosed with diabetes at ten years and hashimoto’s at 23 yrs old.

13

Generally, no. As I said, I’m convinced my basals aren’t correct. However, because of my basal profile, I’m having to double the insulin I take with dinner over what I do with breakfast or lunch. My ratios are 3:15 at breakfast, 4:15 at lunch and 7:15 at dinner. I’m only doing 6:15, as I’ve been experiencing hypos. I had the worst hypo earlier this week with a BG of 40.

I’ve been an EMT for almost 15 years, and a cop for almost 8. I’ve seen what can happen if diabetes isn’t taken seriously. Frankly, I’ve got a very close relationship with my feet, and I’d like to still know them when I’m 90. :wink:

Just for the record, I still have a tad bit of beta cell function remaining. My current c-peptide result is 1/2 of what it was 3 months ago. At the current rate of destruction, I should have no beta cell function in 3 - 6 months time.

14

I first had Graves Disease which is an autoimmune thyroid disease similar to Hashimoto’s except you suffer from hyper-thyroid instead of hypo. Two years later I lost a ton of weight and experienced heart palpitations. By accident my doctor found high glucose. Because of my age, 45, I was told I was a skinny Type II. Glucophage and exercise didn’t help my glucose levels and I then begged my doctor to do a GAD test. It came back positive and he immediately put me on insulin and all was good. I also have Auto-immune inner ear disease which had affected my life more profoundly than diabetes. Losing communication with people can be devastating and life changing.

15

Hello. I am new to this site. Some dude found me on twitter.

Hashimoto’s, you bet. Dx’d when I was 12 tho. I don’t/didn’t “believe” in any side effects. I take the pink pill every day. I got it so young though… pre-pubescent, a juvenile…

At 29, I got sudden onset Stiff Man Syndrome. I got dx’ed a year later. I tested postive for the anti-Gad Antibody. Same one as diabetes… But! My blood sugar levels were never tested.

When I was about 33, I remember going to the gyno and she pulled out her speculum and showed me a good 8 oz. of… Gross! I thought I was eating too much sugar. I had no idea it was hanging around in my blood stream.

The night sweats began. The rapid heart beat. The cravings for fruit. Eating like a “pig”.

Again, no one tested me. (She’s old and skinny! Someone wrote “medical myopia” somewhere. Think that sums it up.)

At age 36, I was hospitalized with a bg of 1300 or so. They were surprised/shocked that I was not in a coma.

I had dropped to 88lbs. from a norm of 125-135. I didn’t know what was happening to me. When the delirium began, I was resigned to peacefully die at home when my brother called and came over.

This is what I had been googling (when I could still read and write):

excessive thirst
constant urination
excessive hunger
weight loss
nausea

And I came up with sites for hiking! (Bring lots of water!)

My honeymoon lasted about 6 months - got a 6 A1C once. I got sick of eggs and made a sculpture out of my egg cartons. I soon learned the wonders of conscious-choice diabulemia. I was angry that they pumped full of 40 lb. of saline water in the hospital. The swelling never fully went down. Needless to say, the “skip the insulin” weight-loss plan did not work. I am still suffering the consequences. Had to double my Novolog. My latest A1C was 9 – which is better than 12 (last September).

I am turning 40 this year, having celebrated 3 years on insulin, which immediately made me sane (God bless the Pig!) but I suspect insulin and management have given me all the “side effects” that I never suffered for the 5+ (?) years that my BS was jumping up and down. Now I get colds and other common illnesses, injuries don’t heal, a fabu heart murmur appeared, my legs are cramping at night, the night sweats continue… And Stiff Man disease does not take a day off.

I suppose my D is very brittle and I finally agreed to try the pump out - soon.

So, my query for you, my fellow LADA’s… Is it harder to deal, manage, escape the nasty consequences when diagnosed as an adult with other pre-existing conditions; without the bouncy strength and a young body to adjust to it…? That’s my feeling. I had been living with it, letting it wreck havoc on my bodily system for years - perhaps as much as 6 years. The last year I went into a rapid decline.

Thanks for reading. I am both grateful and sad to be here.

16

Hi there - I’m glad to have found this forum. I was diagnosed with type-1 diabetes at 23 years old. As far as I could tell, I was only experiencing symptoms for less than 6 months before I finally walked in to the emergency room to find out once and for all what was wrong with me. It started with gradual thirst, weight loss…and then progressed to the point where I could not produce saliva in my mouth to talk, 107 lbs on 5’8" frame, couldn’t gain weight to save my life (literally) despite constant hunger & eating, felt lethargic and sleepy all the time, and two really weird symptoms: water started to taste really bad to me (metallic, weird taste…which made me want juice…bad cycle…) and I got leg cramps in the middle of the night. After giving me a folder that said “Managing Type 2 Diabetes” they gave me a folder that said “Managing Type 1 Diabetes”. The age of my diagnosis was certainly odd for “juvenile” diabetes, but I I’ve been responding to insulin. My a1c while I was in the hospital was something ridiculous (like 13), but after I started insulin it became a 5.6. It’s never been that low since my first 3 months (where I was scared to death to eat carbs). After almost 3 years with injections from my novopen, I decided to switch to the pump. My uncle on my father’s side had diabetes (i think type-1 because he had it young) and passed away in his 40s or 50s (they lived in Taiwan, not sure what kind of treatment he had, or what he passed away from). Other than this piece of information that I never really paid attention to, diabetes was non-existent in my life until I was diagnosed. I don’t know if I’m type 1.5 - what draws me to be curious about this is the age I was diagnosed. But does it matter?

17

Hi Maureen: Sorry you are part of the club, but good thing you are here and are now getting appropriate treatment. Sadly, many are like you and don’t get correctly diagnosed for years. “Weeds” actress Elizabeth Perkins went to doctors (including endocrinologists) for more than 10 years before they correctly diagnosed her (in her 40s) as having Type 1 diabetes.

I have two autoimmune diseases (Type 1 diabetes and Hashimoto’s Disease), both diagnosed around the same time–I was 35. I did go into DKA, and I do believe that it took me longer to physically recover because I was not a young 'un.

Just do everything you can to get the best care for yourself. Good for you for getting a pump, I really think it makes a difference, and if you can get a continuous glucose monitor (CGM) that would be excellent.

Best of luck to you, Melitta

18

I was diagnosed with LADA (there is no medical Type 1.5) at 39. I am fortunate to have some of the best family physicians in NJ and was put on insulin right away. My endo then confirmed the diagnosis with a series of test (I can not remember what).