Type 2 or LADA?

[ATB123]

I believe it is possible to have type 1 without any genetic markers.
There is no history of Type 1 in my family going back at least four generations (and anyone earlier would not have survived). However, that didn’t stop me getting it.
And I have heard of others in a similar sitUstinov.

I work in a different field but all my patients have diagnosed autoimmune inflammatory arthritis. Some have antibodies, some don't. But they all have autoimmune arthritis. The only difference between the cohorts is that those with antibodies tend to have more progressive disease, but the non antibody patients also can have progressive disease. Immunology is so very complex and new research evolves all the time. Anyway, having waffled on, just wanted to say it must he possible to have autoimmune diabetes without antibodies surely, and I agree with you!

 

[LadyPT]

I am totally at a loss as to what to do. We obviously need to see what his CT (with contrast - thorax/abdomen/pelvis) shows as this will check out his pancreas, as well as having a general look around for a tumour (strong family history of cancer) to try to explain away the weight loss.

In the meantime, he has no ketones in his urine when they dip and normal range GAD, so his diabetes nurse says “your bloods confirm you have Type 2 diabetes”. No option to get a hospital referral. No mention of there being other conditions that can cause a high HbA1c (that has, admittedly, responded well to taking Metformin and cutting the carbs) and BG that spikes when he eats and drops when he does any kind of activity. Making me feel like I am looking for something that isn’t there… “he isn’t T1, so he’s T2” is the general vibe.

I am starting to wonder if I they are right and I am overthinking this… he was only diagnosed last year, yet he has had many diabetic issues: skin infection, peripheral numbness in fingers and toes, wounds are slow to heal, plus they confirmed background retinopathy in both eyes at his diabetic eye check in December. But - by the diabetic nurse’s own admission - he is not a typical T2 diabetic at all.

 

[EllieM]

Hi @LadyPT is he on a keto diet to obtain that hba1c?

 

[Melgar]

I work in a different field but all my patients have diagnosed autoimmune inflammatory arthritis. Some have antibodies, some don't. But they all have autoimmune arthritis. The only difference between the cohorts is that those with antibodies tend to have more progressive disease, but the non antibody patients also can have progressive disease. Immunology is so very complex and new research evolves all the time. Anyway, having waffled on, just wanted to say it must he possible to have autoimmune diabetes without antibodies surely, and I agree with you!

Interesting. I hear what you are saying and obviously this is your field and for me I'm a lay person and I simply have an an interest. I do have a question. I know it's complex. If your body is triggered into an immune response and attacks a body part surely that immune response must produce antibodies. I'm not challenging you I am not understanding why no antibodies? Coeliac which is what I have you get tested for antibodies. No antibodies no coeliac and TDM1 if you are not producing antibodies you don't have Type 1. I obviously have a big risk for RA as my mother had it and it crippled her, but I don't have it. Anyways it's a very exciting field

 

[Melgar]

Sorry I don't mean to distract from your post ATB123 which is obviously very worrying for you and you want answers. I had the same bunch of tests for a pancreatic tumour and I was negative. I hope you get some answers .

 

[ATB123]

Interesting. I hear what you are saying and obviously this is your field and for me I'm a lay person and I simply have an an interest. I do have a question. I know it's complex. If your body is triggered into an immune response and attacks a body part surely that immune response must produce antibodies. I'm not challenging you I am not understanding why no antibodies? Coeliac which is what I have you get tested for antibodies. No antibodies no coeliac and TDM1 if you are not producing antibodies you don't have Type 1. I obviously have a big risk for RA as my mother had it and it crippled her, but I don't have it. Anyways it's a very exciting field

I think diagnosis can sometimes be an art rather than a science and can't speak for diabetes because I simply don't know, but in inflammatory arthritis, you don't necessarily have the antibodies, and conversely you can also have the culprit antibodies and NOT have any symptoms! Just to confuse things further. But blood test are only a part of the overall diagnosis, often diagnoses are made on clinical symptoms and presentation. It's hugely complex!

 

[Antje77]

No antibodies no coeliac and TDM1 if you are not producing antibodies you don't have Type 1.

While being positive for antibodies, plus having diabetes, is diagnostic for T1, negative antibodies do not rule out T1.
There may exist more antibodies than are yet known, I don't know. The amount of antibodies present changes over time too, and can go from positive to negative. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3064062/#:~:text=At diagnosis of type 1a,(ZnT8Ab) (1) and https://pubmed.ncbi.nlm.nih.gov/33712367/

 

[HSSS]

In the meantime, he has no ketones in his urine when they dip and normal range GAD, so his diabetes nurse says “your bloods confirm you have Type 2 diabetes”.

Actually no it doesn’t. As other have said no GAD antibodies isn’t conclusive as it’s possible to have none or another type. Also ketones are typically only present when someone is either in nutritional ketosis or heading towards DKA, which is a big way many type 1 get initially diagnosed. I suspect most type 1 with a decent hba1c such as your husband has right now wouldn’t have any either. That’s not saying he is type 1 just that it’s not as black and white as the nurse portrays. Is she a practice nurse or a specialist diabetes nurse? Many surgeries just use a general nurse for type 2 patients.

 

[Melgar]

While being positive for antibodies, plus having diabetes, is diagnostic for T1, negative antibodies do not rule out T1.
There may exist more antibodies than are yet known, I don't know. The amount of antibodies present changes over time too, and can go from positive to negative. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3064062/#:~:text=At diagnosis of type 1a,(ZnT8Ab) (1) and https://pubmed.ncbi.nlm.nih.gov/33712367/

I agree, however the GAD antibody test seems to be the one Dr,s ask the lab to test for not (ICA), antibodies to insulin (IAA) or protein tyrosine phosphatase (IA2 or ICA512). And GAD antibodies can be positive or negative because it could be others.

I also checked out ATB123 assertion that some antibody negative RA cases are still RA. I found this very easily on Google :

"There are differences in the risk factors associated with seropositive and seronegative (RA) disease. Anti-CCP-negative RA does not always indicate a milder form of RA disease. And while it is unlikely for a person with seronegative RA to ever turn positive, it may be an eventual indicator of a different disease altogether, like psoriatic arthritis, gout or osteoarthritis. ……………. seronegative (my insertion for clarity) RA may even be confused with osteoarthritis, which is not even an autoimmune disorder, but is caused by daily wear and tear of the joints. "

Types of Rheumatoid Arthritis - Seropositive or Seronegative RA , The Illinois Bone & Joint Institute

 

[Lamont D]

I am totally at a loss as to what to do. We obviously need to see what his CT (with contrast - thorax/abdomen/pelvis) shows as this will check out his pancreas, as well as having a general look around for a tumour (strong family history of cancer) to try to explain away the weight loss.

In the meantime, he has no ketones in his urine when they dip and normal range GAD, so his diabetes nurse says “your bloods confirm you have Type 2 diabetes”. No option to get a hospital referral. No mention of there being other conditions that can cause a high HbA1c (that has, admittedly, responded well to taking Metformin and cutting the carbs) and BG that spikes when he eats and drops when he does any kind of activity. Making me feel like I am looking for something that isn’t there… “he isn’t T1, so he’s T2” is the general vibe.

I am starting to wonder if I they are right and I am overthinking this… he was only diagnosed last year, yet he has had many diabetic issues: skin infection, peripheral numbness in fingers and toes, wounds are slow to heal, plus they confirmed background retinopathy in both eyes at his diabetic eye check in December. But - by the diabetic nurse’s own admission - he is not a typical T2 diabetic at all.

This has my interest peaked. I may be repeating myself and I'm not gonna rule anything out, such as has been discussed.

My initial T2 misdiagnosis was because of diabetic numbers. And the symptoms so common with hyperglycaemia. These bloods were taken in the morning and not fasting bloods. I always had carbs (porridge) for breakfast. I was informed to eat a healthy carb filled diet.
The symptoms were a long list.
Most doctors, dsns, dieticians told me I was T2.
However, it came to pass, a later blood test, told a different story it was 3and a half hours after food. I was having a hypo!

I cannot do anything but mild exercise, cos if I need energy when I have used it, glucogenisis occurs (liver dump) this will cause the reactive part of my condition. Walking, doing the chores, a bit of lightweight gardening....
Can't run, do weights, lift and carry too much etc.
So I know that feeling, symptoms.

Again in giving you my experience. And there are many other conditions, that have those symptoms including other hypoglycaemic conditions, pancreatic conditions.
And you may have one or more of these conditions. It is not straightforward.
There is something going on because of the unusual readings, symptoms and effects of having food, drink or just being awake.

You need a referral and if you're not already, testing around meals, pre meal, two hours, three and even four hours after, to see how the food he is eating affects him.
That is to rule out basic hypoglycaemia around food.

But he could be getting high BG levels (hyperglycaemia) because his first phase hormonal response is effected by insulin resistance or insulin of being abnormal at that time.
And because of his high spikes, his hyperglycaemia will only worsen.
And I would suggest to you.
As I do if someone posts about similar conditions to RH. To read our forum and see if something rings a bell.
I do hope you get sorted what ever it is.

My best wishes.

 

[Alexandra100]

Are there other bloods he can have done to check he is actually a Type 2 diabetic and not LADA? Are we able to get these done privately i

 

[Alexandra100]

You can get a fasting C-peptide test done privately - I did. C-peptide is a marker for insulin level, and seemingly easier to test for than insulin itself. However, the test will probably cost you over £100. At the same time as the C-peptide test he will need to have a fasting blood glucose test. This is important, as high glucose with low C-peptide (which I had) may signify either long-term T2 or incipient T1. My tests included an evaluation and feedback from a GP employed by the clinic, which explained all this to me.
Good luck!