I’m still waiting after at least 10 years of testing, 
on official accurate diagnosis.i have a few and some argue with each other but never safely look into it.even when I had insurance.
So yes I agree 
that is good medical pros.they know what they are doing and are putting patient first.Glad to hear people have quality care.the libre is awesome and affordable- just my personal opinion. I think I’ve tried almost all current versions of sensors from different companies.
There are many overlapping conditions. At my journey start I was told possible celiac,they kept checking my thyroid ( over and over ) I had bad anemia from” Malabsorption “ recently I found hemolytic anemia despite I have trouble with low b12, low vitD. And so much more.The worst of all my symptoms has always been hypoglycemia similar as u describe.
I think many peoples results might have similarities but In the end everyone is different.
I’ve met people with your condition. I dOnt know enough about all the condition. One lady kept saying she had so much relief with the prescription the doctor gave her.
I have had plenty experience with similar blood sugar issue as you describe. I’m sure you probably need certain foods With your condition. some need to stay away from certain foods and others need to eat more of them. Definitely ask your doctor about the foods.
How long have you been vegan and do you have special blends of food to get nutrient variety?My son did this and he was very thin but he did this on his own and I encouraged him to look into the proper diet for vegan. What do you feel best on and which foods make u feel kind of sick?Something all doctors seem to agree is a protein with carb. Finding the right food combo for your personal needs is One key for hypoglycemia. I do agree with others on the low,high glycemic it allowed me to still enjoy life by having some treats like using agave with my protein pancakes.
I also have been slim Really for most of my life. Ok at times they would say underweight no matter how well I ate. I believe one of the recent doctors wanted to test me for addisons or adrenal insufficiency but I lost insurance.
When I started taking a corticosteroids inhaler for asthma and that’s the first time,literally I ever gained weight. Even when I had kids lol I didn’t gain much.
Below this link describes some hormones relations to your condition and possible cause of hypoglycemia. Some articles are written for journals but u get an idea and maybe ask your doctor about the connection.
Lada is the same as type one, it is not an actual diagnosis code even. I have both hashis and type 1. I was diagnosed first with type 1 in dka, insulin dependent right away. Had I been diagnosed earlier all of it could have been avoided by going on insulin.
Then hashis diagnosed 2 years later, but I am sure I had had it already. I used to have bad low bg long before type 1.
What helped me a great deal with bg control was properly treating hashis with not just levo T4 but With lio T3 as well. It is still pretty bad but a lot better.
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Does the low bg have something to do with hashi? Cause I have really low from time to time, and the rest of the time kind of high. Not super high, but too high.
My doctor said I would be getting Sitagliptin Pills (Januvia) in about three weeks (she wanted to wait three months, but I didn’t really want to wait that long), but now, these last 4 days, my fbg has been around 160 every morning, so my nurse said she would talk to my doctor to see what she thinks about that, and if at least get the pills a bit sooner
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I don’t know really but I am assuming it caused it in me long before type 1 diagnosis. You are type 1, you are going to be on insulin eventually and you should just go on insulin. Don’t bother with type 2 meds. Maybe get another endo who knows more.
I understand you not wanting to wait. I would try to get a second opinion about how to handle it. Someone else here who is type 1 was put on type 2 meds in a research study of some sort by her doc and her a1 c just kept going up. You are going to damage your body and risk possible dka. I had a lot of damage from dka and could have died, which could all have been avoided by early diagnosis and treatment with insulin.
Clearly there is a relationship between the thyroid levels and bg fluctuations.
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Interesting…!
Yeah my nurse said I would probably get insulin for meals, but the doctor (who I’ve never even met, she just saw my numbers from the Libre) said pills. In Sweden, it’s not really an option to change your doctor/Endo. You get one and that’s what you get… i love free healthcare, but sometimes it would be nice to just be able to choose for yourself.
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Maybe you can discuss it with the doctor? I hope so 
I’m not sure I will ever actually meet the doctor… I don’t even know the doctors’ name. I believe it is a woman, but that’s about it.
But yeah, I will talk to my nurse on Monday, and say I don’t feel comfortable with taking the pill, and especially not when prescribed by someone I’ve never met.
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Wow, well then I would push to speak to her. And make it clear to the nurse you want insulin. Your c peptide is very low, you really just need to go on insulin imo. I would not wait for possible dka. And even if you do manage to squeak by on it for any length of time your high bg is and will be damaging your body.
Once insulin production completely stops in type one it just stops, it is not a slow process, you go into dka, it is like dropping off a cliff.
Is there any basis in fact about this island? I was not diagnosed until age 72 after a year and half of being in tjhe Type 2 category. It was only after my dietician advised that I get the C-Peptide test and GAD antibody that I was “changed” to Type 1.5. Got rid of 3 medicines I was taking unnecessarily. A little miffed that doc did not see reason for the test. I had lost 57 pounds (without much effort) in a year. That was red flag
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I was the same way. I was 67 when my A1c was high. My primary care physician diagnosed me as type two. On Medicare I was allowed one test strip a day. He did not give me a test meter. I went to a diabetes class at the local clinic. They gave us a test meter, and my bg was 428. I had lost 30 pounds. I made an appointment with a CDE and she ordered the tests. I’m type one. I lost confidence in my PCP to diagnose anything correctly. As a type one Medicare coverage is much more inclusive.
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@Andrea8 I was misdiagnosed by my pcp and an endo for over 8 years. They never tested me even though I asked a few times if I could be, as I had an uncle that had been. It wasn’t until I switched doctors who sent me to a new endo that she ordered the tests and I was diagnosed right as a type 1. I’ve been a type 1 for 21 years now. It’s crazy and still is. You’re lucky you had a dietician that spotted the signs.
Type 1.5 actually doesn’t have a clear cut definition and insurance doesn’t use it. It’s actually not a medical recognized definition. Most of the doctors out there are highly confused what Type 1.5 or even LADA means. One person just a few years ago that was diagnosed as LADA was told by their pcp they wouldn’t ever need insulin if they ate right. But doctors will recognize type 1, it’s just half will think you automatically got it as a kid even though 50% of type 1’s get it after the age of 30. But at least they know what it is. But you’d be surprised how many in the medical field don’t know that type 1 can be gotten as an adult. Now the general populace… , it seems we’re all type 2’s.
Just last year a late 20’s guy went to emergency and was told he was a type 2 and sent home. Luckily they ran tests and called him the next day and told him to come back, he needed to be hospitalized, he was a type 1 in DKA.
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I was randomly lucky to be diagnosed correctly as a T1D by a young GP when I was 30 years old. This was in 1984 and when I look back I can see that I could have been easily misdiagnosed.
Luckily for me, my GP used his common sense and made the right call. He likely had never seen a type 1 ever be diagnosed. By the way, type 1.5 or LADA was not part of the language yet; the term can be traced to 1993.
Here are the details from a 2019 paper for those who may be interested :
There is no uniform agreement on the definition of LADA but diagnosis is usually based on three criteria (Fourlanos et al., 2005; Naik et al., 2009); (1) adult age at onset, (2) islet autoantibodies as a marker of autoimmune activity, (3) insulin independence. However, the exact application of these criteria varies; Onset should be in adulthood but the actual age limit varies, although 30 or 35 years is most commonly used. The slow onset that distinguishes LADA from type 1 diabetes with adult onset is typically defined as absence of insulin treatment during the first 6 or 12 months following diagnosis, but this criterion has been questioned since it is subjective and depends on the judgment of the treating physician (Brophy et al., 2008). One alternative is to use fasting C-peptide levels as an indicator of remaining insulin secretion and a “latent” onset (Takeda et al., 2002; Rasouli et al., 2016). The least controversial criterion is the assessment of autoantibodies as a marker of the autoimmune activity that separates LADA from type 2 diabetes. Glutamic acid decarboxylase antibodies (GADA) are most frequently used due to the fact that this antibody is far more common in patients with adult onset autoimmune diabetes than other autoantibodies often found in children with type 1 diabetes (Tuomi et al., 1999; Sørgjerd et al., 2012; Hawa et al., 2013).
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Wow, that’s really helpful @Terry4. I’ve always struggled with the whole LADA thing, which I never heard of until stumbling across it decades after I was dx’d with T1 at age 28 in 1983 (close to your Date with D Destiny as we know). A couple of things stand out.
I was 27 when symptoms started, dx’d a couple weeks later just after turning 28. Which is neither here nor there, except…
This is one of the things that hit me like a roadblock when I first started hearing about LADA as a thing: people talking about getting misdiagnosed and going for months or years before starting insulin. This was just SO not a match-up for what I experienced and what I always assumed T1 was that it took me a while to get my head around it. I’ve figured my timeline from start of symptoms to dx at about six weeks surrounding my 28th b’day. I’d had a bout of flu I’d just gotten over before I started feeling symptoms of Something Else and at dx the Doc said that might have been the trigger. I don’t know what my BG number was but Doc judged I was in incipient DKA. Felt weak, constant nausea, headache, and of course the mad thirst and peeing thing. Your wife probably wouldn’t have been able to wake you up tomorrow morning was how he put it. First insulin injection then and there. “Absence of insulin treatment during the first 6 or 12 months following diagnosis”? I’d be dead.
Finally this one really is an eye-opener:
So GADA-pos is more typical of adult onset T1, and for childhood onset might come up negative? Cuz here’s the thing: They didn’t have these tests back in '83 afaik and I only had GADA done a few years ago when I started worrying about Medicare and the notion of having to prove I was T1 after living it for 40 years. So I was pretty stunned when it came up negative. I thought “I’m screwed.” Also “WTAF is this then?” Some people suggested there were other antibody tests you could do but I was leery of having anything else on my chart that might end up getting me kicked off pump therapy and CGM. Fortunately Medicare only cared about the C-pep, which came up sub-normal when I finally had it done correctly. I’ve passed all the hurdles so it’s all moot now. But it does leave me a little curious now whether coming up neg on GADA, which was such a gut-punch at the time, means I have the so-called “juvenile” antibodies floating around. Not that it matters anymore, but I really felt disoriented for quite a while when I got that negative result. I mean, I was pretty sure I hadn’t just dreamt all this, but still…
Anyway, it still pisses me off when people—medical professionals among them—say “You’re too old for Type 1” when that was the whole point of changing the terminology. If having LADA as a designation helps the PCP’s take T1 into consideration then I’m all for it. Just doesn’t seem to fit my own version.
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@DrBB – I’m glad these issues are moot in your case and you’re rightfully receiving all the Medicare benefits. As we both know, diabetes symptoms can vary from person to person. While we both share adult onset of diabetes, unlike you, mine was slow. I had symptoms 6-9 months before the actual diagnosis. Like you, antibody testing was not done at diagnosis and when it was done many years later it was negative.
I’m sure you noticed all the indefinitive language in the paper I cited: no uniform agreement, usually, exact application varies, typically, subjective, most frequently, far more common, and often found. The best characterization about much of the “scientific” literature is “interesting.”
I think the important thing that people should take from this bit of diabetes history is that “LADA” and “Type 1.5” are not generally accepted by the medical hierarchy. Anyone who fits the description of LADA type 1.5 would best describe themselves as Type 1.
Of course, then there’s the baffling confusion among too many medical professionals about the distinction between T1D and T2D. Unfortunately that can and does affect treatment, like when insulin is inappropriately withheld from a T1D in the hospital.
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All good points of course. I also think fear of insulin is a factor, and not just for patients. Goes against the grain of all their training to give patients a powerful injectable they have to administer themselves based on math ‘n’ guesswork ‘n’ god knows whatall else they’ve got churning around in their mushy little not-medically-trained and certainly-not-board-certified little heads. Easier to diagnose somebody T2 than have to deal with that whole mess. Pills-n-exercise! Come back in six months. Nurse show in the next patient. Especially in an HMO situation where they’re grudging about things like referrals to outside specialists, something I experienced over the years often enough to coin an acronym for it. YDFLNCA: You’re Doing Fine Let’s Not Change Anything.
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I just read the following by a medical professional who encountered problems when she tried to get diagnosed. There is discussion following.
https://www.inspire.com/groups/autoimmune-disease/discussion/ask-the-expert-medical-gaslighting-and-how-to-ensure-your-provider-hears-yo/?p=1&sort_order=ASC&reply_structure=threaded
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From the ADA 2024 Standards of Care
Check out the flow chart for diagnosing Type 1 diabetes in adults
It is important for health care professionals to realize that classification of diabetes type is not always straightforward at presentation and that misdiagnosis is common and can occur in ∼40% of adults with new type 1 diabetes (e.g., adults with type 1 diabetes misdiagnosed as having type 2 diabetes and individuals with maturity-onset diabetes of the young [MODY] misdiagnosed as having type 1 diabetes) Link
There is debate as to whether slowly progressive autoimmune diabetes with an adult onset should be termed latent autoimmune diabetes in adults (LADA) or type 1 diabetes. The clinical priority with detection of LADA is awareness that slow autoimmune β-cell destruction can occur in adults, leading to a long duration of marginal insulin secretory capacity. For this classification, all forms of diabetes mediated by autoimmune β-cell destruction independent of age of onset are included under the rubric of type 1 diabetes. Use of the term LADA is common and acceptable in clinical practice and has the practical impact of heightening awareness of a population of adults likely to have progressive autoimmune β-cell destruction Link
There are many causes of diabetes. Current ADA list I had no idea there were so many.
American Diabetes Association Professional Practice Committee; 2. Diagnosis and Classification of Diabetes: Standards of Care in Diabetes—2024 . Diabetes Care 1 January 2024; 47 (Supplement_1): S20–S42. 2. Diagnosis and Classification of Diabetes: Standards of Care in Diabetes—2024 | Diabetes Care | American Diabetes Association
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Hey, I think I just said that!