Hi - new diagnosis and very confused

Type 1 and LADA
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Hi all,
It’s great to be here, I’ve spent a lot of time reading over the past couple of months, finally found this site and thought now was the time to say hi and maybe ask for advice.
I’m not 100% sure this is in the right place so apologies if not.

I’m 45 and was quite unwell the beginning of the year, finally went to my gp thinking hormonal issues to be told I have diabetes. Due to autoimmune disease being prevalent in my family and my serum ferritin being 442 (ref 30=200) I asked for auto antigen testing. My doctor told me he would request them but they would be negative as I have type 2 and put me on metformin. I’ve drastically changed my diet - cut out all sugar and carbs, I’ve managed to maintain ave glucose of 7.7 on dexcom. My initial HbA1c was 88 and blood glucose over 15, A1c not being tested again till August.
Anyhow, my GAD was 15 kU/l (ref 0-4.9) and islet triple cell 91 u/ml. GAD85, IA-2 and ZNT8 (Ref 0-20)

My doctor declared LADA and referred me to the local diabetic team who told me I’m type 2. GAD not high enough and bmi 30. (Until 2 years ago it was 25.) and that I’m well controlled with diet and meds it’s definitely not type 1 - they discharged me for gp to treat.

What are the normal results levels for these test if mine indicate positive but are too low for LADA. I am unable to find a definitive answer other than they are positive/borderline, and are there results that can be positive and be type 2?

I’m feeling a little disheartened as I was told the results speak for themselves so really have no idea which professional is right. Has anyone any experience in this? Can the results be wrong? Or have I just misunderstood.

Thank you in advance for anyone who’s managed to read the whole thing and even more gratitude to any answers.

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A few things. You can have low antibodies and not end up developing type 1. I believe that’s rarer because it’s usually a sign of type 1. When you first get Type 1 as an adult, LADA, 50% get it after the age of 30, it can take years before you finally stop production of insulin. 8 years plus. It’s a slow process. So the antibodies can be low at onset, otherwise the process would be much quicker.

We are commonly misdiagnosed as type 2’s because of that. It means you still make some insulin, enough to not get really sick and with some diet changes or/and drugs can cope for a while, until you can’t. I was misdiagnosed for over 8 years, I was put on insulin because all the drugs they put me on didn’t work great and made me sick. I questioned the type 2 diagnosis because I had an uncle that was type 1 and they said no you’re type 2 by my pcp and an endo and neither tested me. I’m assuming because I was overweight. It wasn’t until I switched doctors who sent me to a new endo that she tested me and I was diagnosed right.

Here the tests they usually use is for antibodies and a C-peptide test. The C-peptide can be variable but it measures how much insulin your body is making. A low or lower end normal is usually a sign of type 1 and a high or high normal is usually a sign of type 2. There again at onset they will range towards more normal results. But what it does tell you is if you are making higher levels, that’s usually a sign of type 2 because your body is trying to produce more insulin to make up for being insulin resistant. Lower means your body isn’t making enough insulin. You can send for one yourself, they aren’t expensive. It might give you more information. But if it’s close to the more normal levels it won’t be that telling. I would think with a 7.7 high A1c that it should be sort of definitive but…

Things don’t always make sense and you have to work more at answers fortunately. I had asked my pcp and endo twice if I could be a type 1. I didn’t know at the time that there were even tests to ask for. I swam 75 laps in a gym pool every day. I had been a long term vegan, ate very healthy, and I think just because I was overweight they were determined I was a type 2. Over 38% of us still get misdiagnosed. It is very frustrating and I am forever grateful for the new endo I saw who tested me.

  1. C-Peptide While most tests check for antibodies, this test
    measures how much C-peptide is in a person’s blood.
    Peptide levels typically mirror insulin levels in the body.
    Low levels of C-peptide and insulin can point to T1D
  2. Glutamic Acid Decarboxylase Autoantibodies (GADA or Anti-GAD)
    This test looks for antibodies built against a specific enzyme in the
    insulin-producing pancreatic beta cells.
  3. Insulin Autoantibodies (IAA)
    This tests looks for the antibodies targeting insulin
  4. Insulinoma-Associated-2 Autoantibodies (IA-2A)
    This test looks for antibodies mounted against a specific enzyme in
    beta cells. Both the IA-2A and GADA tests are common T1D antibody tests.
  5. Zinc Transporter 8 (ZnT8Ab)
    This test looks at antibodies targeting an enzyme that is specific to beta cells.
  6. Islet Cell Cytoplasmic Autoantibodies (ICA)
    Islet cells are clusters of cells in the pancreas that produce
    hormones, including insulin. This test identifies a type of
    islet cell antibodies present in up to 80 percent of people
    with T1D.

BTW I was also given the line that the meds wouldn’t work at all if I was a type 1. Part of the problem is your PCP’s only run into a type 1 once in their life and just don’t know much about it. An endo should be better but…my first one wasn’t.

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I think Marie misunderstood some of the results you posted. If my interpretation is correct, then I tend to agree with your diabetes group that believes Type 2 is more likely. Which frankly, should have you jumping for joy!

If I am correct, then it is your BG that is now 7.7 mmol/l, i.e. 138 mg/dl. But your BG at diagnosis was 15 mmol/l or 270 mg/dl, and your A1c at diagnosis was 88 mmol/mol or 10.2 %. Those values at diagnosis are very high, T1 DKA high, and I believe would only come down as dramatically as they have in a type 1 by using insulin.

The combination of your BG improving so miraculously with metformin only and without insulin, plus your unconvincing antibody tests (actually you might want to look those over again and repost all the tests you’ve been given, what is islet triple cell? And other tests all zero?), since GAD is not reliable as only positive test (high chance of false positive) if I understood what you wrote. I agree with Marie that a c-peptide would also be useful, but perhaps that was done?

If you are indeed a type 2, then if you are proactive with weight loss, diet, and exercise it looks like you can avoid the need for insulin, for at least a while and possibly indefinitely. That is wonderful news, take it from someone who has had T1 injecting insulin every day for 50 years.

Although it is certainly possible for a T1 to be improperly diagnosed as a T2 as Marie relates, the vast majority of T2 diagnoses are correct, especially(!!) after performing antibody tests available today.

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@Jag1 Since I was misdiagnosed for years, I went through the gambit of being given Metformin, it worked well, but it started making me vomit and I had to stop it. I was also given Januvia, Actos, Victoza. They all worked to some extent at first. But in my case I am allergic or react badly to half of anything ever given to me, most of the medications were stopped because of reactions, not because they weren’t helping. I don’t seem to be prone to DKA thankfully. But I commonly would have numbers in the high 200 and 300’s. I even went into the 400’s. In fact the third year I was waking to 180-220, I was not taking any insulin. My BG level would then rise up more after eating. Drugs (not insulin) were started after that and brought my numbers down, which then just slowly started increasing again.

I am not wishing type 1 on anyone. But misdiagnose is still prevalent and can’t be ignored. It is very frustrating to be doing the right things and not have it work. In my case I had already been doing the “right” things and slowly losing the battle. When I was told I was a type 1 the endo thought I would be upset, I wasn’t because it explained everything. And it’s not because I wanted to be a type 1, but it was because it explained what was going on.

I am not saying he’s a type 1 or 2, I don’t know. But I am saying if things sometimes don’t make sense someone could be a type 1 and with so many of us misdiagnosed still in this day and age it’s something to be aware of.

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These are the screen shots of the results I have been given.
Does this help any?
Thank you for taking the time to reply.

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What country are you in? I can try to find the information on the tests you asked.

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The reality is that it doesn’t matter too much what type you are as long as your sugars get into control
It seems a lot of LADA are confused with type 2
If the type 2 meds don’t work, then take insulin. Then I really won’t matter what type you are.
That can be figured out later. What you need now is to get your sugars into line

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To distinguish between Type 1, LADA (1.5) and Type 2 a person needs to get a C Peptide test and an autoantibody test done. These two tests can distinguish between Type 1 and Type 2 diabetes. Type 2 diabetes does not have autoantibody markers nor will it show a low C Peptide. usually the C peptide test is normal or low normal in Type 2 diabetics.

The presence of GAD autoantibodies indicates an immune system attack, which points to type 1 diabetes.

If your GAD test indicates you have antibodies, even in low range, means you have type 1 or LADA due to your age.

Type 2 diabetes will not have any presence of antibodies

Keep pushing the doctors. Most are clueless

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Some people develop type1 without the antibody markers.
Many LADA patients have normal CPeptide results because their pancreas is still making insulin.
So the tests by themselves can make the diagnosis more difficult.

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I’m in the UK,
Thank you

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This seems like bad advice to me. The truth is that all tests have false positives as well as false negatives, and it simply isn’t true that GAD necessarily proves Type 1. Here is an paper you should read about it: LADA likely to represent

The OP is a fairly recent diagnosis, and diet changes with metformin has been quite successful so far. His doctors seem far from useless. Give it some time, and follow through on current plan would be my advice.

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This is interesting because I thought in the UK they only did a GAD test as that is the most common one (for expense reasons) That a positive GAD test was taken as you are a type 1 when you have symptoms. Your GAD test per the graph you posted shows it as high, so I don’t get it. Here is an explanation of blood tests, GAD in particular. And UK has a higher prevalence of type 1’s than the US.

It does matter to get the proper diagnosis here, I’m sure it matters there too. Here it opens the door to easy access to tech that helps us. I think that is probably the case there too. Also proper diagnosis matters in care. They always wait to give insulin until needed, but as a type 1 they have classes to teach you things helpful as a type 1.

Here it also matters. As a “type 2” I was given long term insulin at first and told by my pcp to start with 10 units and every 2 days up it 2 units until it works. That’s it, nothing about what too much does etc. Lots of lows, especially at night to get it to “work” at trying to control my high numbers during the day. When I left that doctor and got an internist she added humalog and just said 1 unit per every 3 carbs. Again lots of lows, and not a clue about what I was doing. If I had been diagnosed right I would have gotten (hopefully) the right training. I learned most of what I knew from this site! (thank You everyone).

Here as a type 2, it is eat right, exercise, medications to try to get your numbers down. I was already doing all that and it wasn’t working. Even when given insulin I wasn’t taught much of anything, not prebolusing, not how to treat lows or avoid them, not how to dose right, not DKA etc. When I was diagnosed right I had been taking insulin for years, but I wasn’t taking it as a “type 1”. The understanding I was a type 1 and had to have insulin for everything meant within 3 months I dropped to a 6.3 A1c. Because then I knew for that salad, the bowl of broccoli, or the piece of chocolate I had to have insulin for it. Honestly, proper diagnosis matters.

In the UK I think you might be stuck with your district care group??? Maybe the original doctor that said you are LADA you can talk to him and tell him you are confused by the care team? You might also have a number to call for help? I have some friends there that might be able to tell me if there is some kind of appeals process? It looks like you need a better explanation about why the high is being taken as a type 2 ?? Maybe pay for a C-peptide yourself to see what the results are if they won’t?

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Thankyou @Marie20 I thought I knew all of it but you just summarised everything, including a lot I didn’t know. @eric @catlady et al; I think this should be pinned somewhere right at the top, well, maybe under the header “science”. If bits are wrong they can be updated.

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Sorry to hear you aren’t well and it is diabetes related. Differentiating between Type 1 and Type 2 in adults is hard in some people even for the best doctors. From what I can see your GP was half way there.

Not according to the National Institute for Health and Care Excellence (NICE) and the 2 NHS hospital trusts that google found for me before I stopped looking.

While there is some disagreement around if >5 or >10 is positive, your result was 15 so you have tested positive for GAD65 antibodies. Everything I’m seeing on the triple diabetes antibody test says if you test positive, as you have, the next step is to test for two or more specific diabetes antibodies.

I’m trying to think of practical next steps for you. Does the app show that your GP entered a Type 1 diagnoses for you? Also I’m curious, is that the new NHS app? The difficult part is that NICE and the NHS hasn’t adopted the stages of Type 1 diabetes, In the US we’d say you were possibly stage 2 T1D, so you are going to have to advocate for yourself with the clinic to get them to create a care plan customized to your situation.

Maybe talk to your GP again and ask they try to confirm two or more diabetes antibodies. There’s at least 20 known reasons for abnormal blood glucose, and antibodies destroying islet cells is just one. There’s a lot of information people have posted, let us know how we’re doing at giving you the help you need and where you want to go from here.

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It’s not just the GAD alone that was way high. The other test says “Diabetes antibodies triple ELISA screen includes GAD65, IA-2 and ZNT8.” The reference range is 0-20, and the test result for RigbyT is 91 according to the test result posted above.

I’d say don’t accept a diagnosis of T2 yet, get a second opinion from a medical professional (in the US it would be an endocrinologist) running a medical practice focused on patients with type 1 diabetes. And if you have type 1, that means you have an absolute deficiency of insulin because your body is losing it’s ability to make it, in which case it may be misguided to compensate with other medicines that make your kidneys dump extra sugar into your urine or that slow your digestion. When I was diagnosed at age 52, my endo said “You are type 1. You need insulin.” That was not a point of debate. If you learn how to take the insulin you need, and can develop the technique to return your A1C to the non-diabetic range, you avoid the cumulative long-term damage from elevated blood glucose. You have a stake in the outcome.

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The advice being given here is somewhat misguided. People are acting like the available antibody tests are a definitive “yes/no” for diagnosis of diabetes type, but that simply isn’t so. How do you explain the young DKA children who need insulin to survive, but don’t test positive for antibodies. They need insulin but they don’t test positive for antibodies because these tests are NOT definitive.

Conversely how does one explain the adults that test positive for antibody, but for decades maintain normal BG without medication after weight loss? Or for that matter, the many, many people without any diabetes who test positive for these antibodies yet never develop diabetes of any sort. There are false negatives, and there are false positives, there are T1s who are initially diagnosed as T2, and there are T2 who are initially diagnosed as T1.

The truth is that diagnosis of diabetes type is sometimes blindingly obvious, but other times very complex, and it isn’t because of incompetent doctors. In complex cases there is no yes/no test - there is an algorithm needed, and that algorithm is still being refined, and one of the inputs to that algorithm is sometimes time to follow a patient and see how he responds to treatment.

Read this paper if you want one recent take on the gory details: Type 1 diabetes presenting in adults: Trends, diagnostic challenges and unique features

“ Given the high rate of initial disease misclassification, how then does the practicing clinician reliably identify individuals with adult-onset T1D? A high level of vigilance is necessary, and the simple AABBCC mnemonic can serve as a reminder to consider age, other autoimmunity, BMI, background (i.e., family history), control and comorbidities when considering diabetes aetiology.[8] The development of actual data-driven tools to identify adult-onset T1D is needed and under active development. Among single features, age at diagnosis (<40 years), low BMI (<25 kg/m2) and progression to insulin therapy within 3 years of diagnosis are the best predictors of T1D.[85]”

“ While features such as age of onset, BMI, history of autoimmunity, the presence of classical symptoms and severity of hyperglycaemia are useful in building a case for an individual, no single clinical feature can accurately distinguish T1D from T2D.[8] Thus, overlap in the clinical features between T1D, T2D, and even atypical and monogenic diabetes subtypes may often lead to continued uncertainty of diagnosis, even when autoantibodies and C-peptide measurements are available. In this setting, longitudinal monitoring of C-peptide may allow for detection of progression to severe insulin deficiency, which necessitates treatment with insulin, whatever the clinical diagnosis. “

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Type 1 diabetes is characterized by the presence of autoantibodies.

What you stated is false

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I don’t care what it seems like to you. I statesld Facts.
In the U.S. many people are misdiagnised with type 2 diabetes when in fact they have LADA.doctors don’t even test older adults past having an A1C done.
Doctors auto assume type 2.I know of many doctors that refuse to do C peptide tests.
Now, the OP didn’t state his weight at diagnosis.
At 45, if he is overweight then it is safe to assume type 2.
If he is 45 and lean and active then my money is on LADA.

From my experience, if I listened to people like you and doctors I would have died a long time ago.
I have taken endocrinology courses at UCLA and have extensively read the studies and literature on diabetes that goes back 20+ years.
I will take the pepsi challenge against you or any doctor.

The OP needs to test. Type 2 diabetes does not have autoantibody markers.

You’re as bad as the people that are now claiming a person can get both type 1 and type 2 diabetes.

The only type of diabetes that has no autoantibody markers or is weight based is MODY diabetes. That requires a gene test. MODY is caused by a mutation (or change) in a single gene.. If a parent has this gene mutation, any child they have, has a 50% chance of inheriting it from them.

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If he has LADA it cannot be reversed. He needs insulin. Without insulin he will die.

Even with LADA there is a honeymoom period. His body may be still be making some insulin, but not enough hence the reason for meds.

And early insulin protocol could take pressure of his pancreas and extend his honeymoon phase.

If he is a true type 2 then he needs to lose weight and get active to try to reverse the condition.

But, your advice will kill him if he has LADA