Possible misdiagnoses of type 2? LADA instead?

[LondonC24]

Hi everyone,

A quick background- I got told I was diabetic last May and GP thought I was type 1 (I was 24, weight lifting and cardio 4x a week, healthy weight and diet due to history of eating disorders). HBA1C was 72. I was asked to come in to test for ketones, which they found and I was sent straight to A&E for fear of DKA. A&E told me that whilst I wasn’t in DKA, I was diabetic, and needed to come in the next day for insulin. I returned the next day where my BM was 5.2 after eating and they told me I wasn’t diabetic, and that my HBA1C was high due to my size (I’m a size 10). GP then said I must be type 2 and put me on metformin. Was then referred to a diabetic specialist nurse who suggested I might be type 1 and in the honeymoon phase. Was told to come of the metformin and repeat HBA1C and do c-peptide test after 3 months, although he said it could take years for my c-peptide to come up. Results were normal for C-peptide and still high HBA1c.
They did a GADA test in Jan of this year and it’s come back negative.
My BMs are very rarely above 7 but when they are double digits my GP has told me not to worry, despite telling me to call them for advice when this happens.
I have no risk factors for type 2, nor any family history of pre-diabetes/diabetes at all.
What I do have however is my mother with borderline hypothyroidism and my sister with diagnosed hypothyroidism as well as endometriosis which is under investigation. I understand that LADA may be more common in those with family autoimmune condition?

Is it possible that I could be LADA and I may have the other varieties of antibody? I just can’t seem to get my head round a type 2 diagnosis. Any advice would be great

 

[Antje77]

Yes, it's possible, not all T1's are positive for anti-GAD, and C-peptide can be within normal parameters for quite some time as well in LADA.

 

[LondonC24]

Wow okay, how long could it be until these show? I feel like every time I express my concerns of misdiagnosis to the dr they just get pushed aside

 

[Lamont D]

My advice is to get a referral because of the confusion, because if it was straightforward, the tests would have been conclusive.
With test results like you have posted, there is more going on than the dsn and GP can do.

There are many conditions that it can be. I have a non diabetic condition. And it took many tests done by a specialist in a hospital to get a true diagnosis.

Keep safe.

 

[LondonC24]

That’s really interesting to know. Will the gp refer me if I ask or will I have to pay privately for it as I’m not sure the gp believes me

 

[Antje77]

Wow okay, how long could it be until these show?

There are different types of antibodies, having one of them plus having diabetes would be diagnostic. You're only tested for the anti GAD ones.

Mind, I'm not saying you're most likely a T1, I have no idea what type of diabetes you have.
The tests you had so far (anti-GAD and C-peptide) are simply inconclusive at this moment.

My BMs are very rarely above 7

Which looks like you're doing well at this point. When did you last have your hba1c tested and wat was the result?

 

[Lamont D]

That’s really interesting to know. Will the gp refer me if I ask or will I have to pay privately for it as I’m not sure the gp believes me

Always ask first, but if it's through NHS, it may take some time.
There is always the option of going private, but I shudder to think of the costs of some of the tests you may need.

 

[giorgoXXI]

Hi everyone,

A quick background- I got told I was diabetic last May and GP thought I was type 1 (I was 24, weight lifting and cardio 4x a week, healthy weight and diet due to history of eating disorders). HBA1C was 72. I was asked to come in to test for ketones, which they found and I was sent straight to A&E for fear of DKA. A&E told me that whilst I wasn’t in DKA, I was diabetic, and needed to come in the next day for insulin. I returned the next day where my BM was 5.2 after eating and they told me I wasn’t diabetic, and that my HBA1C was high due to my size (I’m a size 10). GP then said I must be type 2 and put me on metformin. Was then referred to a diabetic specialist nurse who suggested I might be type 1 and in the honeymoon phase. Was told to come of the metformin and repeat HBA1C and do c-peptide test after 3 months, although he said it could take years for my c-peptide to come up. Results were normal for C-peptide and still high HBA1c.
They did a GADA test in Jan of this year and it’s come back negative.
My BMs are very rarely above 7 but when they are double digits my GP has told me not to worry, despite telling me to call them for advice when this happens.
I have no risk factors for type 2, nor any family history of pre-diabetes/diabetes at all.
What I do have however is my mother with borderline hypothyroidism and my sister with diagnosed hypothyroidism as well as endometriosis which is under investigation. I understand that LADA may be more common in those with family autoimmune condition?

Is it possible that I could be LADA and I may have the other varieties of antibody? I just can’t seem to get my head round a type 2 diagnosis. Any advice would be great

While you might be a Type 1.5, at this point to be honest it would irrelevant, as with a normal C peptide and BG under control, you would be treated as a T2 anyways (that is to manage glucose via a diet, Metformin etc.), as you are producing enough insulin. Sometimes LADA is very difficult to diagnose, and it only becomes apparent when your insulin levels become very low.

If you can't get the other 2 antibodies measured, just keep monitoring your fasting BG at home to make sure it doesn't creep up. If it does, get your C-peptide measured again.

 

[HappyBee]

Hi everyone,

A quick background- I got told I was diabetic last May and GP thought I was type 1 (I was 24, weight lifting and cardio 4x a week, healthy weight and diet due to history of eating disorders). HBA1C was 72. I was asked to come in to test for ketones, which they found and I was sent straight to A&E for fear of DKA. A&E told me that whilst I wasn’t in DKA, I was diabetic, and needed to come in the next day for insulin. I returned the next day where my BM was 5.2 after eating and they told me I wasn’t diabetic, and that my HBA1C was high due to my size (I’m a size 10). GP then said I must be type 2 and put me on metformin. Was then referred to a diabetic specialist nurse who suggested I might be type 1 and in the honeymoon phase. Was told to come of the metformin and repeat HBA1C and do c-peptide test after 3 months, although he said it could take years for my c-peptide to come up. Results were normal for C-peptide and still high HBA1c.
They did a GADA test in Jan of this year and it’s come back negative.
My BMs are very rarely above 7 but when they are double digits my GP has told me not to worry, despite telling me to call them for advice when this happens.
I have no risk factors for type 2, nor any family history of pre-diabetes/diabetes at all.
What I do have however is my mother with borderline hypothyroidism and my sister with diagnosed hypothyroidism as well as endometriosis which is under investigation. I understand that LADA may be more common in those with family autoimmune condition?

Is it possible that I could be LADA and I may have the other varieties of antibody? I just can’t seem to get my head round a type 2 diagnosis. Any advice would be great

Good Morning, I’m going through something very similar.
I was diagnosed pre diabetic in November and had my fasting glucose which was 61 in Feb. I was dx with Type 2 & over the course of 3 weeks I was put on 2000mg of Metformin a day.
My son bought me a testing kit so I could track what potential foods were spiking me but I found out so much more!
Despite taking Metformin, my waking BG was between 15.5 & 17.5mols. It was going down to around 6 just before lunch and then steadily climbing throughout the day.
I mentioned This to my gp and he asked me to do a discovery sheet for a week which I did and the Discovery for me is that he thinks I need insulin and that I also have LADA not Type 2.
He’s booked me in for the GAD test on the 5th May so we’ll find out but either way it looks like insulin is the way forward for me.

Good Luck!

 

[Lamont D]

Good Morning, I’m going through something very similar.
I was diagnosed pre diabetic in November and had my fasting glucose which was 61 in Feb. I was dx with Type 2 & over the course of 3 weeks I was put on 2000mg of Metformin a day.
My son bought me a testing kit so I could track what potential foods were spiking me but I found out so much more!
Despite taking Metformin, my waking BG was between 15.5 & 17.5mols. It was going down to around 6 just before lunch and then steadily climbing throughout the day.
I mentioned This to my gp and he asked me to do a discovery sheet for a week which I did and the Discovery for me is that he thinks I need insulin and that I also have LADA not Type 2.
He’s booked me in for the GAD test on the 5th May so we’ll find out but either way it looks like insulin is the way forward for me.

Good Luck!

Metformin will only make a slight difference to your blood glucose levels.
If you are on diet only, did your discovery sheet show the foods which have spiked you?
Did you target the glucose testing around meals? For example, pre meal, then two hours after. The fasting test may be skewed because of dawn phenomenon.
With only being a few months in, your body will still need time for dietary adjustments, if you haven't, then that is why your levels are all over the place. You have to reduce the spikes and the number of spikes.
The GAD test may not show anything, did your GP d a c-peptide test as well? Because that will show how much insulin You are producing.
If your GP, seems like he doesn't know, ask for a referral to a specialist.
Keep safe.

 

[jonathan183]

C-peptide should give a good indication how much insulin your body is producing.
HbA1c may be OK for most instances but in some cases alternative tests like fructosamine may be required.

 

[HSSS]

Good Morning, I’m going through something very similar.
I was diagnosed pre diabetic in November and had my fasting glucose which was 61 in Feb. I was dx with Type 2 & over the course of 3 weeks I was put on 2000mg of Metformin a day.
My son bought me a testing kit so I could track what potential foods were spiking me but I found out so much more!
Despite taking Metformin, my waking BG was between 15.5 & 17.5mols. It was going down to around 6 just before lunch and then steadily climbing throughout the day.
I mentioned This to my gp and he asked me to do a discovery sheet for a week which I did and the Discovery for me is that he thinks I need insulin and that I also have LADA not Type 2.
He’s booked me in for the GAD test on the 5th May so we’ll find out but either way it looks like insulin is the way forward for me.

Good Luck!

A GAD test is only conclusive if it’s positive. A negative result doesn’t disprove type 1 or prove type2 either. As mentioned above there are a number of other antibodies too. I agree a cpeptide might give more information and clear things further.

As to the high morning levels and climbing levels later as a type 2 that might be explained by diet. Without confirmatory blood tests of type 1 then it’s only if you don’t respond to cutting out the carbs that it’s possible to eliminate diet as a cause. So what do you eat? It might help add to the picture of which is more likely.

 

[HappyBee]

A GAD test is only conclusive if it’s positive. A negative result doesn’t disprove type 1 or prove type2 either. As mentioned above there are a number of other antibodies too. I agree a cpeptide might give more information and clear things further.

As to the high morning levels and climbing levels later as a type 2 that might be explained by diet. Without confirmatory blood tests of type 1 then it’s only if you don’t respond to cutting out the carbs that it’s possible to eliminate diet as a cause. So what do you eat? It might help add to the picture of which is more likely.

 

[HappyBee]

Thanks for your replies.
I have just come back home from having my blood tests done so we’ll know soon enough I guess!

In answer to your question regarding food, my doctor & diabetic nurse have both said I eat very healthily. In truth in the past, I have always been someone who eats when I am hungry and not when the clock tells me to & that leads me to believe I may have brought this on myself. I’ve never been much of a snacker as I’m not fond of sweets and chocolate.
My one downfall if anything would be cheese and onion crisps, now I have one crisp out of someone’s packet & not the whole bag!

The wait is on…

 

[HSSS]

Thanks for your replies.
I have just come back home from having my blood tests done so we’ll know soon enough I guess!

In answer to your question regarding food, my doctor & diabetic nurse have both said I eat very healthily. In truth in the past, I have always been someone who eats when I am hungry and not when the clock tells me to & that leads me to believe I may have brought this on myself. I’ve never been much of a snacker as I’m not fond of sweets and chocolate.
My one downfall if anything would be cheese and onion crisps, now I have one crisp out of someone’s packet & not the whole bag!

The wait is on…

Let us know how you get on. Which tests did they do?

Eating to hunger is a good thing not a diabetes inducer. Many use this to help type 2. Snacking is more likely to cause type 2 than not snacking is. Calling something “healthy” doesn’t make it so. Lots of medical staff think carbs do no harm so long as they are brown/whole grain and have no idea how much they and things like oats and bananas can cause high levels in type 2. That’s why we ask “what” you eat not if it’s “healthy”

 

[HappyBee]

C-peptide should give a good indication how much insulin your body is producing.
HbA1c may be OK for most instances but in some cases alternative tests like fructosamine may be required.

It really is a minefield isn’t it!!

From what my GP has said (he’s fantastic by the way) he thinks I’ll benefit from insulin but wanted confirmation of T1 or T2 first, hence the tests which I’ve had this morning. Im sure he will do these other tests if necessary but I will definitely mention them to him, thanks!

 

[HappyBee]

Let us know how you get on. Which tests did they do?

Eating to hunger is a good thing not a diabetes inducer. Many use this to help type 2. Snacking is more likely to cause type 2 than not snacking is. Calling something “healthy” doesn’t make it so. Lots of medical staff think carbs do no harm so long as they are brown/whole grain and have no idea how much they and things like oats and bananas can cause high levels in type 2. That’s why we ask “what” you eat not if it’s “healthy”

I believe it was the GAD test and my usual 3 monthly a1c.

It’s a relief to know my eating habits haven’t helped cause this as I’ll be honest it has been playing on my mind quite a bit!

I understand what you mean in regards to diet, I’ve had to pay close attention to mine for a few years after having my gall bladder removed so I eat very little carbs and high sugar fruits.

 

[K8Flan@@7]

Hi everyone,

A quick background- I got told I was diabetic last May and GP thought I was type 1 (I was 24, weight lifting and cardio 4x a week, healthy weight and diet due to history of eating disorders). HBA1C was 72. I was asked to come in to test for ketones, which they found and I was sent straight to A&E for fear of DKA. A&E told me that whilst I wasn’t in DKA, I was diabetic, and needed to come in the next day for insulin. I returned the next day where my BM was 5.2 after eating and they told me I wasn’t diabetic, and that my HBA1C was high due to my size (I’m a size 10). GP then said I must be type 2 and put me on metformin. Was then referred to a diabetic specialist nurse who suggested I might be type 1 and in the honeymoon phase. Was told to come of the metformin and repeat HBA1C and do c-peptide test after 3 months, although he said it could take years for my c-peptide to come up. Results were normal for C-peptide and still high HBA1c.
They did a GADA test in Jan of this year and it’s come back negative.
My BMs are very rarely above 7 but when they are double digits my GP has told me not to worry, despite telling me to call them for advice when this happens.
I have no risk factors for type 2, nor any family history of pre-diabetes/diabetes at all.
What I do have however is my mother with borderline hypothyroidism and my sister with diagnosed hypothyroidism as well as endometriosis which is under investigation. I understand that LADA may be more common in those with family autoimmune condition?

Is it possible that I could be LADA and I may have the other varieties of antibody? I just can’t seem to get my head round a type 2 diagnosis. Any advice would be great

Hi Sirt if in same boat- I am Diagnosed positive Hashimotos (Hypo Thyroid TPO/TgA +
Maternal side family: mom and 2 siblings Type 1, grandMom RA, femail cousins of Maternal Aunt all have either Lupus, celiac, RA Hashimotos Graves or Diabetes a couple other rare immune disorders) But we keep testing but no antibodies of the 4-5 related to diabetes. I do respond well if I can stay low carb and do consistent Excercise/ resistance etc and if ketones running between .7-1.7 seems to be sweet spit everything goes nicely back to normal. If I get depressed and just give in eating high carb even healthy high carb numbers go haywire, I still feel great but issues with infection if a toe in hospital they put me direct in insulin and told me likely my Mom’s Type1 now 3months later 25 pounds heavier on insulin. Horrible I know this is too aggressive and not the right answer. Aren’t there any other tests! I need a much better and involved physician in my care. I also need much more proactive meal and Excercise planning menopause is also kicking my butt hormone wise and doesn’t insulin promote cancer, heart damage and eye damage??

 

[jonathan183]

C-peptide for establishing how much insulin your body is producing - if normal/elevated would suggest type 2/other issues rather than type 1. If your own insulin production is high then adding more is unlikely to be a good approach.
Antibodies tests can confirm positive but a negative result may just mean the particular antibodies are not detected by the test.
I think poor blood glucose control is more likely to damage your eyes.
Are you on basal/bolus insulin regime with adjustment of bolus to match what you eat or fixed doses or mixed insulin ? Basal/bolus probably offers the best chance of keeping insulin dose lower to match what you eat ...

 

[Lissia]

Hi everyone,

A quick background- I got told I was diabetic last May and GP thought I was type 1 (I was 24, weight lifting and cardio 4x a week, healthy weight and diet due to history of eating disorders). HBA1C was 72. I was asked to come in to test for ketones, which they found and I was sent straight to A&E for fear of DKA. A&E told me that whilst I wasn’t in DKA, I was diabetic, and needed to come in the next day for insulin. I returned the next day where my BM was 5.2 after eating and they told me I wasn’t diabetic, and that my HBA1C was high due to my size (I’m a size 10). GP then said I must be type 2 and put me on metformin. Was then referred to a diabetic specialist nurse who suggested I might be type 1 and in the honeymoon phase. Was told to come of the metformin and repeat HBA1C and do c-peptide test after 3 months, although he said it could take years for my c-peptide to come up. Results were normal for C-peptide and still high HBA1c.
They did a GADA test in Jan of this year and it’s come back negative.
My BMs are very rarely above 7 but when they are double digits my GP has told me not to worry, despite telling me to call them for advice when this happens.
I have no risk factors for type 2, nor any family history of pre-diabetes/diabetes at all.
What I do have however is my mother with borderline hypothyroidism and my sister with diagnosed hypothyroidism as well as endometriosis which is under investigation. I understand that LADA may be more common in those with family autoimmune condition?

Is it possible that I could be LADA and I may have the other varieties of antibody? I just can’t seem to get my head round a type 2 diagnosis. Any advice would be great

Hi
i was diagnosed as type 2 but after going through metformin, saxagliptin, then gliclazide my BG was still high and not stable, waking up at 17 mmol was no joke, I was sent to a specialist who told me that despite my size she wasn’t convinced I was type 2 at all and that it may be LADA broadly known as 1.5, she did tests that showed I produced almost no insulin so she switched me to insulin, it’s been a roller coaster and a learning curve but I’m getting there.
she said the reason she didn’t think it’s type 2 was because I have other autoimmune diseases too and one can often follow another.
she also read all my bloods for the last 6 years…she said I can’t re diagnose but I can tailor your treatment to what I believe will be effective, she did and since then it’s been so much better.