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Conclusive test for LADA?

A

AmyW

Active Member
Hello!
So I was diagnosed with Diabetes four/five weeks ago with HBA1C of 104, GP insisted on starting insulin as he felt he couldn’t rule out type 1 and put this largely down to my age (I’m 32, although from reading all of the posts here age seems irrelevant!) he’s now questioning LADA as I have tested positive for GAD anti-bodies although he said it wasn’t the strong positive he has said they are there. I have nattered him for a C-peptide test which he has referred me for, again from reading here I feel very lucky he has done this so quickly.

I just wondered which is the most conclusive test?

The only symptom I had was unexplained weight loss (3 stone in just over twelve months) but because I was a little on the chubby side to start with I thought this was a good thing, the first GP I saw also said it was good and he only orders basic bloods. They came back with a B12 deficiency but apparently that’s magically resolved itself? No history of Diabetes on either side of my family but quite a lot of autoimmune conditions. I’m feeling frustrated and wanting answers but I know I have to wait, the insulin seems to be working well, given myself one induced hypo by miscalculating my insulin dose versus what I’d eaten.

just wondering if there is anything else I need to be asking for? I’m really nervous about getting the wrong diagnosis, using this forum is so helpful but the amount of people that seem to get misdiagnosed frightens me, I didn’t think it would happen! Thank you all :)
 
I am confused by your question. Are you asking how to tell the difference between LADA and Type 1? The terms are often interchangeable and the treatment (insulin) is the same.
 
In Response said:
I am confused by your question. Are you asking how to tell the difference between LADA and Type 1? The terms are often interchangeable and the treatment (insulin) is the same.
Click to expand...

no no, sorry! I was trying to gage is there, if any, blood test to diagnose T1//LADA over T2. I’d spoken to a doctor I work with and he’d said that antibodies regardless of strength of them would point more towards type 1. I’m just not sure what position I will be in if the c peptides are high. Sorry I know I can’t make a point without going round the houses!
 
AmyW said:
no no, sorry! I was trying to gage is there, if any, blood test to diagnose T1//LADA over T2. I’d spoken to a doctor I work with and he’d said that antibodies regardless of strength of them would point more towards type 1. I’m just not sure what position I will be in if the c peptides are high. Sorry I know I can’t make a point without going round the houses!
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Having diabetes plus positive anti-GAD is T1 (which includes LADA) so you've had that conclusive test already.

In the early stages, C-peptide can be anything from low to normal because your pancreas doesn't stop working like turning off a light switch, it keeps spluttering insulin for a while.
This 'honeymoon period' can work with or against you, for some, the pancreas is helpful, more or less working together with your injected insulin, sometimes even completely taking over the work for a while. For others it's a nuisance, the pancreas can produce insulin randomly, or not, causing diabetes to behave unpredictably.

Other pointers (not conclusive, they can happen in T2 as well) for T1 are the family history of autoimmune conditions, the weightloss and your age.
AmyW said:
the insulin seems to be working well, given myself one induced hypo by miscalculating my insulin dose versus what I’d eaten.
Click to expand...
That's wonderful, long may it stay the same!
 
Antje77 said:
Having diabetes plus positive anti-GAD is T1 (which includes LADA) so you've had that conclusive test already.

In the early stages, C-peptide can be anything from low to normal because your pancreas doesn't stop working like turning off a light switch, it keeps spluttering insulin for a while.
This 'honeymoon period' can work with or against you, for some, the pancreas is helpful, more or less working together with your injected insulin, sometimes even completely taking over the work for a while. For others it's a nuisance, the pancreas can produce insulin randomly, or not, causing diabetes to behave unpredictably.

Other pointers (not conclusive, they can happen in T2 as well) for T1 are the family history of autoimmune conditions, the weightloss and your age.

That's wonderful, long may it stay the same!
Click to expand...

Thank you very much! I really appreciate it, I’m going to address it with him when I speak to him. I’d managed to speak with Endocrinologist who said that having GAD regardless of strength is Type 1 so he doesn’t know why my GP is being difficult about it ;)
 
AmyW said:
Thank you very much! I really appreciate it, I’m going to address it with him when I speak to him. I’d managed to speak with Endocrinologist who said that having GAD regardless of strength is Type 1 so he doesn’t know why my GP is being difficult about it ;)
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Do you see the endo for your diabetes? If so, why is your GP telling you things about your diabetes, the endo is the specialist.
 
Antje77 said:
Do you see the endo for your diabetes? If so, why is your GP telling you things about your diabetes, the endo is the specialist.
Click to expand...

I’d had a chat with one via someone I know from work, still under GP care until they’ve confirmed the diagnosis.
 
A positive GAD test is conclusive for T1. LADA is effectively the same as T1 but refers to the slower onset later in life. The end result is the same. The problem comes when GAD and the other antibody tests are negative like mine were. The C-Peptide can help a lot but the test isn't very reliable and I don't trust the urine one over the plasma one. The C-Peptide can be useful if the beta cell damage is caused by a virus rather than antibodies.
 
Daibell said:
A positive GAD test is conclusive for T1. LADA is effectively the same as T1 but refers to the slower onset later in life. The end result is the same. The problem comes when GAD and the other antibody tests are negative like mine were. The C-Peptide can help a lot but the test isn't very reliable and I don't trust the urine one over the plasma one. The C-Peptide can be useful if the beta cell damage is caused by a virus rather than antibodies.
Click to expand...

thank you! The endocrinologist I spoke to said the same, he was saying if antibodies are present it’s type 1 regardless of how many there are, just more it could be slower onset, he didn’t say anything positive about the GP!
 
Well I think me and the GP are about to have a fall out, he says the Endocrinologist is wrong and that it’s okay to have different opinions on this. He then said he’s read a study suggesting that there can be antibodies with type 2 (I’ve read this also but it suggests they were diagnosed with LADA instead) I said I feel diagnostic criteria is more accurate than one research finding, he says I’m wrong. GAD is low positive, only came back as 12 but I’m going to consider getting a second opinion and will pay to see an endocrinologist so I can have written copies of his advice. I mean I’m probably the one in the wrong, he’s definitely making me feel this way!
 
AmyW said:
thank you! The endocrinologist I spoke to said the same, he was saying if antibodies are present it’s type 1 regardless of how many there are, just more it could be slower onset, he didn’t say anything positive about the GP!
Click to expand...
Daibell said:
A positive GAD test is conclusive for T1. LADA is effectively the same as T1 but refers to the slower onset later in life. The end result is the same. The problem comes when GAD and the other antibody tests are negative like mine were. The C-Peptide can help a lot but the test isn't very reliable and I don't trust the urine one over the plasma one. The C-Peptide can be useful if the beta cell damage is caused by a virus rather than antibodies.
Click to expand...

Well I think me and the GP are about to have a fall out, he says the Endocrinologist is wrong and that it’s okay to have different opinions on this. He then said he’s read a study suggesting that there can be antibodies with type 2 (I’ve read this also but it suggests they were diagnosed with LADA instead) I said I feel diagnostic criteria is more accurate than one research finding, he says I’m wrong. GAD is low positive, only came back as 12 but I’m going to consider getting a second opinion and will pay to see an endocrinologist so I can have written copies of his advice. I mean I’m probably the one in the wrong, he’s definitely making me feel this way!
 
Hello All,

I want to say, Amy, I feel your confusion. I had a GAD result show up on my lab results and when I called the Endo to ask "do I have anything to worry about"...the response was it seems "suspect"...So my story is I was dx type 2 two years ago. Saw endo in May, she did a type 1 assay on me, hence the GAD result showing up. My history includes 10 out of 19 family members with diabetes. 3 more with pre-diabetes. 6 are confirmed type 1, of those 6 two are juvenile (dx before age 10) the 3 type 2's were my grandparents, both treated w/ oral meds. and an aunt, type 2 but insulin dependent right away which leaves questions as she has since passed. I have yet to be determined. My endo has me on a CGM to "see what's going on". looks like I spike and drop. but I am also trying to be careful as well....so lower a1c and bg all around.
All this said, endo is also having me genetically tested for MODY.....from what I read, MODY's rarely ever show up with GAD ab. Which is why I'm wondering why she's testing for that if I had GAD results....

I appreciate any feedback. I've been really confused for a few weeks now. I'm including a copied section from Mayo Clinic: A source of contention I've found on other sites is units of measure. u/ml vs nmol/L. I was measured in nmol/L.

I look forward to hearing your thoughts. :)

Interpretation
High titers (≥20.0 nmol/L) are found in classic stiff-person syndrome (93% positive) and in related autoimmune neurologic disorders (eg, acquired cerebellar ataxia, some acquired non-paraneoplastic encephalomyelopathies).

Diabetic patients with polyendocrine disorders also generally have glutamic acid decarboxylase (GAD65) antibody values 0.02 nmol/L or above.

Values in patients who have type 1 diabetes without a polyendocrine or autoimmune neurologic syndrome are usually 0.02 nmol/L or below. Low titers (0.03-19.9 nmol/L) are detectable in the serum of approximately 80% of type 1 diabetic patients. Conversely, low titers are detectable in the serum of less than 5% of patients with type 2 diabetes. Testing for autoimmune type 1 diabetes is complimented by testing for insulin, IA-2 and ZnT8 antibodies.

Eight percent of healthy Olmsted County residents over age 50 have low-positive values, and may be at risk for future autoimmune disease.

Values 0.03 nmol/L or above are consistent with susceptibility to autoimmune (type 1) diabetes and related endocrine disorders (thyroiditis and pernicious anemia).
 
ChelCee said:
Hello All,

I want to say, Amy, I feel your confusion. I had a GAD result show up on my lab results and when I called the Endo to ask "do I have anything to worry about"...the response was it seems "suspect"...So my story is I was dx type 2 two years ago. Saw endo in May, she did a type 1 assay on me, hence the GAD result showing up. My history includes 10 out of 19 family members with diabetes. 3 more with pre-diabetes. 6 are confirmed type 1, of those 6 two are juvenile (dx before age 10) the 3 type 2's were my grandparents, both treated w/ oral meds. and an aunt, type 2 but insulin dependent right away which leaves questions as she has since passed. I have yet to be determined. My endo has me on a CGM to "see what's going on". looks like I spike and drop. but I am also trying to be careful as well....so lower a1c and bg all around.
All this said, endo is also having me genetically tested for MODY.....from what I read, MODY's rarely ever show up with GAD ab. Which is why I'm wondering why she's testing for that if I had GAD results....

I appreciate any feedback. I've been really confused for a few weeks now. I'm including a copied section from Mayo Clinic: A source of contention I've found on other sites is units of measure. u/ml vs nmol/L. I was measured in nmol/L.

I look forward to hearing your thoughts. :)

Interpretation
High titers (≥20.0 nmol/L) are found in classic stiff-person syndrome (93% positive) and in related autoimmune neurologic disorders (eg, acquired cerebellar ataxia, some acquired non-paraneoplastic encephalomyelopathies).

Diabetic patients with polyendocrine disorders also generally have glutamic acid decarboxylase (GAD65) antibody values 0.02 nmol/L or above.

Values in patients who have type 1 diabetes without a polyendocrine or autoimmune neurologic syndrome are usually 0.02 nmol/L or below. Low titers (0.03-19.9 nmol/L) are detectable in the serum of approximately 80% of type 1 diabetic patients. Conversely, low titers are detectable in the serum of less than 5% of patients with type 2 diabetes. Testing for autoimmune type 1 diabetes is complimented by testing for insulin, IA-2 and ZnT8 antibodies.

Eight percent of healthy Olmsted County residents over age 50 have low-positive values, and may be at risk for future autoimmune disease.

Values 0.03 nmol/L or above are consistent with susceptibility to autoimmune (type 1) diabetes and related endocrine disorders (thyroiditis and pernicious anemia).
Click to expand...
The strong genetic link could be MODY. It's worth having the tests. GAD antibodies exist in the general population in people who never go on to develop diabetes. It is a rapid deterioration onto insulin after diagnosis which would result in a c-peptide lesson than 0.2 nmol/l which is the conclusive diagnosis of type 1.
 
ert said:
The strong genetic link could be MODY. It's worth having the tests. GAD antibodies exist in the general population in people who never go on to develop diabetes. It is a rapid deterioration onto insulin after diagnosis which would result in a c-peptide lesson than 0.2 nmol/l which is the conclusive diagnosis of type 1.
Click to expand...

Thanks for the feedback. :) Just had my labs drawn for MODY today ( a month early. was originally scheduled for Aug 25th). I spoke to a family friend that is a pathology lab tech. She said it's not usual for ANY one to have have GAD, but yes some people can have them and not have any issues. She double checked with one of the endo's she works with and was told if one has already gotten a dx of diabetes and have GAD present, it has clinical relevance regardless the number. Which is probably why my endo said it's "suspect". It is also unusual for MODY's to have GAD present as well but there have been some documented cases.

The only thing that matters to me is that I'm dx correctly so that I move forward with the best game plan for me and share what I've learned along the way to hopefully help others who've had similar questions and concerns. :)
 
Thanks for sharing @ChelCee and welcome to the forums.

ChelCee said:
The only thing that matters to me is that I'm dx correctly so that I move forward with the best game plan for me and share what I've learned along the way to hopefully help others who've had similar questions and concerns. :)
Click to expand...

An excellent game plan. I hope you get your results and a diagnosis back soon.
 
ChelCee said:
Thanks for the feedback. :) Just had my labs drawn for MODY today ( a month early. was originally scheduled for Aug 25th). I spoke to a family friend that is a pathology lab tech. She said it's not usual for ANY one to have have GAD, but yes some people can have them and not have any issues. She double checked with one of the endo's she works with and was told if one has already gotten a dx of diabetes and have GAD present, it has clinical relevance regardless the number. Which is probably why my endo said it's "suspect". It is also unusual for MODY's to have GAD present as well but there have been some documented cases.

The only thing that matters to me is that I'm dx correctly so that I move forward with the best game plan for me and share what I've learned along the way to hopefully help others who've had similar questions and concerns. :)
Click to expand...
It’s not a helpful situation to be in at all is it?? I spoke to my doctor again and he said a diagnosis isn’t relevant as it’s diabetes regardless and that he doesn’t feel he can decide?! He will refer me to an endocrinologist but only the one he has spoken to about my case, I’m not sure where you are in the world but I should be allowed to choose where I am seen! I’ve told him I want to pick and he said he will only refer me to the man he’s spoken to. I’ve booked my own appointment with somebody else! I hope you find an answer soon! Xx
 
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