Late diagnosis

Type 1 and LADA
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Did anyone here get diagnosed with wrong medical diagnosis for many years? I had an endocrinologist who was negligent in clinical assessment. I was finally diagnosed w LADA by figuring it out myself this year. My hemoglobin A1C and sugars could appear normal on tests. I had endocrinologist say I had GADA antibodies in 2016 then 1 week later say they disappeared in labs and she couldn’t find anything wrong with me even though I had hashimotos, had weight loss, nocturia, slow GI motility, and a type 1 mom. She never did carbohydrates challenge w me.

Also in hindsight my first symptoms in 2008/2009 came on during a period of high stress?

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I was for over 8 years. Unfortunately about 35% of us are misdiagnosed as a type 2 at first. Part of the problem is medications and lifestyle changes can work at first because we still make some insulin for a while. It still is a huge problem. I even asked if I could be a type 1 as I had had an uncle that was a type 1 and I was told no without them ever testing me. I think because I wasn’t skinny I was automatically considered a type 2. It wasn’t until I switched doctors that I was finally diagnosed right.

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I was not misdiagnosed as a type 2. I had a failure “to be diagnosed” at all by an endocronologist who saw a low GAD antibody (that then faded) and a normal fasting glucose. Dr never mentioned LADA existed. I would have research if she had. She said why did you have a positive type 1 antibody but normal sugars. She should have given me the glucose challenge. I am a peaks and valleys person. I peak 1.5 - 2 hours after eating and then would come down. I had made lifestyle changes du to GI issues and gone lower carb and she actually set out loudmaybe your low carb is impacting your sugar. Then But I went to endocronologist b/c I had developed severe constipation and I thought it might be related to hashimotos. Unbeknowst to me I had type one probably since around 2008, saw this endocronologist in 2016 - she missed the diagnosis and then only when I went a hair above 5.7 at menopause did I go back to an endocronolgist based on my research. My nocturia and GI issues were blamed on endometreosis, but from my reading Hashimotos and Diabetes give heavy periods. Woman w autoimmune really suffer in the medical system behind the blaming on gyn issues

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Generally doctors do not give type 1 patients a glucose tolerance test, which is what I think you mean by carbohydrate challenge.

That’s something you give to a person you suspect has type2.

LADA is diagnosed almost entirely by presence of antibodies and decreasing c peptide over time.

You can’t entirely blame the doctors. Type2 and LADA present very similarly.

You need to do the testing, and not just for GAD but for all of the antibodies related to autoimmune diabetes.

I have been type1 for 35 years. No doctors bother testing my antibodies at this stage, my c peptide has been zero for 30 years.

We are allowed to make assertions in the doctors office. Like hey I think I might not have the correct diagnosis.
most diabetics, esp type1 s end up being very well educated on the disease.

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So research has found that the cpeptide can be normal for some people w LADA for years. My case also had a Transient GAD antibody that disappeared over 6-8 years is my guess. I met the phenotype, Hashimotos since age 7, mom type 1, low BMI. Then I had weight loss, nocturia, fatigue, mild blurry vision, and brain fog. I saw doctor at tail end of antibody registering on labs.

The physican asked why would you have type 1 is it your diet change that is hiding the sugars. She pondered it out loud. I do hold the doctor responsible to think ab these factors. I had no idea that LADA existed and I kept pulling up MODY. I now hae serious complications. If I hadnt been active over years and watched my diet - god knows

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If your sugars are normal and your cpeptide is normal, I don’t understand how you can have complications from high sugar.
I get that you kept your sugar low and need for insulin low by adjusting your diet.
It’s the high level of glucose circulating that causes complications.
I had years of barely controlled diabetes back before cgm. And somehow I don’t have any complications aside from mild dupuytrens which may or may not be related

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Because I changed my diet in 2016 after started to get GI issues. The GI issues were due to high sugars and sometimes low over course of 8 years since 2008. LADA can hide in an A1C bc I would spike only when eating and then go back to normal fasting. I was peaks and flat valleys. And I noticed most doctors I went to only did a glucose reading not A1C until recent years. My cpeptide is now diminished. I still have fasting BG often between 95-110.

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Oh Barret, Sounds like a really rough time. I hope that you are finding answers on this site and that things will settle in for you now. You sound medically savey and maybe that is of necessity as it was in our family. My identical twin and three of four children are celiac; nieces w hashimotos and other thyroid conditions. Best.

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I had undiagnosed epilepsy since I was a teenager. I was diagnosed around 25 when I had a seizure at work. It was witnessed by a nurse and a priest, so no one had the guts to tell them that they, “didn’t know what a seizure was,” or that they were, “lying about it.” Those were two big barriers to diagnosis.

Another barrier to diagnosis was that my main provider was an endo. When I said I had a seizure, she perceived me as saying, “I had a low blood sugar seizure,” which was impossible for her to believe because the result of that would be death. This happens somewhat frequently because people tend to view every problem a diabetic has, as something that can be traced back to diabetes. This was not that.

Often, when people get a diagnosis, they feel pretty bad about it. But lots of people go through large portions of their life without diagnosis of what ales them. Without a proper diagnosis, there is no way to start solving the problems that confront you. Some people have illnesses for which there is no name and no treatment. The illnesses don’t even exist in the medical books yet. People like that are in deep trouble. Think of people with long COVID, now. They exist in that space. Diagnosis is something to celebrate.

Having said that, a late diagnosis makes for a lot of long term confusion and huge obstacles. My experience was that I had to go back through many years of my life, and explain my life through the lens of epilepsy. Why did that strange thing happen to me on that day 12 years ago? Answer: Epilepsy. Why do I have trouble doing this thing? Answer: epilepsy. Who am I? Answer: an epileptic diabetic. What does it mean to be an epileptic diabetic? What things can I still do? What things can’t I do? How do I mitigate risk in order to participate in more things? What can be overcome and what cannot? How has epilepsy impacted my life experience? How is diabetes different than epilepsy? Why the hell didn’t we figure this out sooner? And on and on and on.

One thing I experimented with, as a way to understand epilepsy, was to understand diabetes. I joined this group as a way to better understand the experience of diabetes. That helped me differentiate between the two illnesses.

If I had to sum up, quickly, the difference between diabetics and epileptics, it is this:

1.) Diabetics do technology (that’s their real special talent as a patient group), epileptics do great lawyering. Those are the tools that each group turns to overcome challanges;

2.) Type 1/LADAs/MODY Diabetics have THE classic example of a blameless physical illness, Type 2s are the classic example of a physical illness that individuals get blamed (and blame themselves) for having. Epilepsy is a mix between physical and brain (but leans much more blameless than most brain problems, like mood disorders or depression). The degree to which the outside world, “blames you,” for your illness, has a big impact on people’s identity and relationship with their illness, in general, across large swaths of the patient community.

One of the great things about being from a “blameless” illness group is that we can be be public about it, if we want to be (there are risks associated with that, but also some benefits). We can advocate for ourselves and others more than people who have to keep their illnesses secret.

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Maybe someone can help explain the difference between Hashimotos and diabetes? What are Hashimotos problems versus diabetes problem in day to day life?

For example, both diabetics and epileptics loose consciousness, but I have a lot more control over one form of passing out than the other. With diabetes, I only half pass out, whereas with epilepsy, I loose consciousness 100%. I’ve never really lost full consciousness from diabetes.

It’s kinda tough to unravel two illness from one another. That might be tough for Barrett upfront.

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Type 1 diabetes is an auto immune disease. hashimotos is also an auto immune disease. This is the only thing they have in common.

Type 1 : our bodies attack our own pancreatic beta cells
Hashimotos: our bodies acacia out thyroid.

It’s more likely to have a second auto immune disease when you have one.

That’s just because a failing immune system will fail in more than one way often.

Passing out from diabetes comes when your sugar is low. It’s not because you have diabetes, but because you have too much insulin in your body or other diabetes med.

Passing out from hashimotos comes from having too much or too little thyroid hormone. And sometimes it swings up and down when it first starts.

Again it’s not the condition that causes it, it’s the fact that there is too much or too little hormone.

Epilepsy is entirely different. It is an electrical problem inside the brain. It usually starts I one place and cascades to other parts. Not all epileptics lose consciousness, but it’s far more dangerous when it happens.
Some feel it coming on, but most don’t.
You need to take meds that either slow the electrical impulses to prevent the cascade or limit the thing that is triggering them.

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Sometimes people take meds, sometimes they don’t, for epilepsy. That makes it different too. Thanks for weighing in, Tim.

I wonder if OP can feel the difference in symptoms between two diseases. How does OP feel when one illness is acting up, versus the other? What does it feel like to have diabetes that isn’t well managed versus Hashimotos that isn’t well managed?

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I was diagnosed DM2 after graduating nursing school at 54. Took 2 years for correct diagnosis but I diagnosed myself after reading many books. Finally C-peptide confirmed. I had been using insulin on my own. Purchased out of the country. Have been my own advocate ever since. Had to diagnose my own Graves’ disease 2 years ago. Takes Endo forever to diagnose. I use them for labs and script’s

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I was misdiagnosed T2D for 19 years. The biggest clue to LADA was either increasing dosage or adding medication about every 15 months until starting insulin. Age at diagnosis (39 y.o.) and not obese was another clue. I was scared of my GLP-1 medication (Victoza) while not getting a CGM if diagnosis changed. So, I put off antibody testing for over a year.

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The definition of diabetes is a fasting blood glucose more than 126 mg/dl or 7 mmol/l
If your fasting blood glucose is less, you are not diabetic under that medical definition, and most physicians would say you were not diabetic.
Having a Type 1 parent is irrelevant, since Type 1 is not thought to be hereditary.
An HbA1c test is not normally done if your fasting blood glucose is less than 126 mg/dl ≡ 7 mmol/l
However, the HbA1c test is a much better test, and should probably be part of a normal physical (but it is not yet a part of the normal physical).
Having an HbA1c less than 5.7 again means you are not diabetic under the medical definition.
An HbA1c of 5.7-6.4 means you are having some elevated sugars, and are pre-diabetic. Having an HbA1c of 6.5 or more means you are diabetic.
If your HbA1c was less than 5.7, you were not diabetic under any medical definition of diabetic.

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This is not accurate. LADA can hide in an A1C.A1C does not show your pattern. I had an antibody attack GAD and spiked to carbs, had normal fasting and A1C. I Had changed my diet to lower carb/healthier/ lower portion due to GI issues later found to be related to the LADA. The diet changed helped disguise the situation bc some LADa’s can initially live as type 2s bc it’s a partial attack.

I was peaks and valleys. My Ob gyn said wear a CGM. She says CGM will change catching diabetes if it goes mainstream w doctors.

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The medical definition of diabetes is a fasting blood sugar of more than 126 mg/dl or 7 mmol/l. That is the definition. After I was diagnosed, everyone saw me use my meter and wanted to know their blood sugar (I had great insurance, so the strips didn’t cost me anything). My mother ate several slices of toast and jelly and asked, and I checked. 72 mg/dl. A person with a fully functional pancreas keeps a fairly steady blood glucose, but if your sugar goes back below 126 after 8 hours, you are not yet diabetic. You might have something else. Many people start to have peaks after meals that come down slowly, but their pancreas is working, even if slow. And it is not considered diabetes. If your c-peptide is normal, you are producing enough insulin. You are worried about the fact that your sugar goes up after meals, but that’s common. Many people have high sugar after a meal, especially a meal with a lot of sucrose. An HbA1c below 5.7 is considered normal: it means your blood sugar is not staying very high for very long. LADA means the pancreas gives up very slowly. At first, it is producing just slightly insufficient insulin. Again, as long as your fasting blood glucose is less than 100 mg/dl or 5.5 mmol/l, you are neither diabetic nor prediabetic. A LADA would first note fasting blood glucose above 100 mg/dl, slowly rising, and an HbA1c above 5.6. Fasting blood sugar between 100 and 125 and HbA1c between 5.7 and 6.4 is prediabetes. HbA1c must be 6.5 or more to diagnose diabetes. That’s the medical definition.

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My c-peptide is not normal. You nailed that.

Diabetes is a spectrum. My GAD antibodies disappeared after 6 years. My doctor says my attack was initially lower level.

Diabetes can be a spectrum.

I read today of another LADA on a Instagram who had normal fasting for a few years.

My fasting is now 105 and A1C 5.7

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Your numbers are now in the prediabetic range and likely to creep up. Your HbA1c is above 5.6, so it does show a problem, as does your fasting glucose above 100.

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I’ve been a type 1 diabetic since I was 16-- I’m 65 now. My older sister has Hashimoto’s Disease, a thyroid condition. Her symptoms were not at all similar to mine for diabetes, except for exhaustion. For me, I was exhausted because I was basically starving to death, since nothing was going into my cells without insulin, while my sister was exhausted because her thyroid hormones were not being produced to do their job in her body. Our other sister has Crohn’s Disease, another autoimmune disorder. Again, her symptoms were totally different from mine, or our other sister’s, except for exhaustion, from constant vomiting and diarrhea. All 3 are autoimmune disorders, so my endo told me that’s what runs in our family, but almost all the symptoms were (are) totally different.