initials

[vince13]

Can you please enlighten me as to what is meant when you "old hands" use initials LADA (I think) is one and there are others I've read on here.

They seem to indicate not Type 1 or Type 2 - what does it all mean please ?

 

[diagonall]

http://www.actionlada.org/ 🙂

 

[vince13]

Thank you - that's one of them out of the way - what about MOBY (I'm not sure that's right actually but you'll probably know what I mean ?) and don't tell me it's a whale !

Also what is Type 1.5 ? How can that be ?

 

[diagonall]

Mody

Try this one for size http://projects.exeter.ac.uk/diabetesgenes/mody/index.htm

Type 1.5 is another name for LADA 🙂

 

[sofaraway]

this is what I wrote for another forum to try to explain MODY, I've copied it here, any questions feel free to ask.


There are 2 types of monogenic diabetes, neonatal diabetes and MODY

neonatal diabetes is usually diagnosed within the first 6 months of life. it is often diagnosed as type 1 as not alot of doctors are aware of the condition. It can be treated with oral diabetes medications from the sulphonylurea group of drugs. Children who are treated with insulin have the chance of stopping and going onto tablets. Anyone diagnosed at 6 months old or younger shoudl be tested for this.

MODY- stands for maturity onset diabetes of the young. which is misleading as it implies type 2 in young people, that is NOT the case. MODY is not type 1 or type 2, but shares similarities with both types.

It is a monogenic type of diabetes, which means a single gene is involved. the gene is dominant. So if a parent has the gene the children will have a 50% chance of getting the gene and therefore getting diabetes.

there are 6 identified genes that casue MODY the 2 most common are MODY 2 and MODY 3

MODY 2 is caused by a defect in the glucokinase gene, this type is almost like a faulty thermostat, the level is set too high, so fasting blood sugar is elevated but these people tend not to see spikes in blood sugar and only have slightly elevated HbA1c's. it is thought that these people do not get complications as they have very stable blood sugars. these people will have higher fasting numbers but will pass glucose tolerance tests.

MODY 3 is the most common form of MODY and is due to a defect in the HNf1alpha gene. peoplw with this type of MODY have normal insulin secretion as children but this reduces with time and diabetes is usually diagnosed by 25 years of age (but can be alot earlier or later) as the diabetes progresses.

people can often initially manage on oral sulphonyureas to which they are very sensitive to, needing alot smaller doses than type 2's. but as the diabetes progresses insulin is needed in alot of people, the time frame differs for each individual, some people can go 30 years before insulin is needed, some only 3 years. when insulin is used it tends to be very small doses due to people with MODY being very insulin sensitive and also natural insulin production will still exist.

There is always a family history of diabetes although it may have been diagnosed as type 1 or type 2 in other relatives. a feature of people with MODY 3 is they spill glucose into the urine at normal blood glucose levels.

people who have been diagnosed with type 1 who are found to actually have MODY have the chance to stop insulin and go onto tablets. but this must be done under supervision of experienced doctors.

people with MODY are very unlikely to get DKA due to natural insulin production, they may have very high blood gluocse levels but don't get the assosiated high ketone levels.

in the US gene testing for MODY may or may not be covered by insurance, but it can be expensive.
in the UK it is free on the NHS

I have tried to explain in simple terms as I can, if anything is unclear please ask, or any more questions I will try to answer.

some links

http://www.diabetesgenes.org

http://www.childrenwithdiabetes.com/clinic/mody.htm

http://www.phlaunt.com/diabetes/14047009.php

 

[RWJ]

Try this one for size http://projects.exeter.ac.uk/diabetesgenes/mody/index.htm

Type 1.5 is another name for LADA 🙂

My specialist explained me being Type 1.5 as I was 50+ when diagnosed type 1. He said that when he trained (20 years ago), there were the two types if you didn't get type 1 before you left you teens it was very rare to get it later, however you could get type 2 at any age. Today however due to ???? it is more and more common (lifestyle changes?), so type 1.5 was born.
My specialists description not mine

 

[vince13]

Wow...thank you for that explanation and I'll try to get my head around it even though it mostly seems way above me !

I only asked because I was told I was Type 2 but was diet controlled in April last year (with readings of 7 then 8). When I hit 25 in October my Dr had me admitted to hospital where the Diabetic Consultant (& Endocrinologist) whom I saw said he thought I had been misdiagnosed and was "evolving into a Type 1" - his words in a letter to my Dr (Sorry I'm repeating all this, I know).

My Dr still feels sure I am Type 2 (age 61 but no other symptons of diabetes until just before she admitted me to hospital - when I was getting blurring vision, awful thirst and thrush - all of 8 stone 6lbs at 5ft etc) but I am now on 2 metformin and 4 gliclazide (with statins and high blood pressure tablets too) and the Consultant is increasing the metformin until I'm on 4 a day (in about 3 more weeks when I see him again) and he says I will then need insulin. My readings are between 6 and 7.5 fasting most days now.

I'm not carping about the care I'm getting as they are really very supportive but I am muddled about where I am in the scale of things.

So thank you for your explanations - great site here and great people too.

 

[sofaraway]

I think I've suggested this before but I think that you need to ask what tests have been done to confirm your type, as it's not clear cut in your case and seems like even your doctor might be confused.

You do seem to be responding to oral meds from the numbers you posted which would indicate type 2, but you don't appear to be overweight so don't have that risk factor for type 2. Do you have a family history of diabetes?

the 2 tests that would help with the diagnosis are a c-peptide test, if your result is very low then it would point more towards type 1/1.5, if it's high point towards type 2.
the other test is to check for antibodies, if these are positive then it's definatly type 1/1.5 and you'd be better off starting on insulin straight away. If they are negative it points towards type 2.

Some people think that type isn't important as long as the treatment is working, whilst i agree that being on treatment that works is vital, knowing type is important especially for people who have rare types like myself as it has further implications (e.g. having children)

 

[tracey w]

this is what I wrote for another forum to try to explain MODY, I've copied it here, any questions feel free to ask.


There are 2 types of monogenic diabetes, neonatal diabetes and MODY

neonatal diabetes is usually diagnosed within the first 6 months of life. it is often diagnosed as type 1 as not alot of doctors are aware of the condition. It can be treated with oral diabetes medications from the sulphonylurea group of drugs. Children who are treated with insulin have the chance of stopping and going onto tablets. Anyone diagnosed at 6 months old or younger shoudl be tested for this.

MODY- stands for maturity onset diabetes of the young. which is misleading as it implies type 2 in young people, that is NOT the case. MODY is not type 1 or type 2, but shares similarities with both types.

It is a monogenic type of diabetes, which means a single gene is involved. the gene is dominant. So if a parent has the gene the children will have a 50% chance of getting the gene and therefore getting diabetes.

there are 6 identified genes that casue MODY the 2 most common are MODY 2 and MODY 3

MODY 2 is caused by a defect in the glucokinase gene, this type is almost like a faulty thermostat, the level is set too high, so fasting blood sugar is elevated but these people tend not to see spikes in blood sugar and only have slightly elevated HbA1c's. it is thought that these people do not get complications as they have very stable blood sugars. these people will have higher fasting numbers but will pass glucose tolerance tests.

MODY 3 is the most common form of MODY and is due to a defect in the HNf1alpha gene. peoplw with this type of MODY have normal insulin secretion as children but this reduces with time and diabetes is usually diagnosed by 25 years of age (but can be alot earlier or later) as the diabetes progresses.

people can often initially manage on oral sulphonyureas to which they are very sensitive to, needing alot smaller doses than type 2's. but as the diabetes progresses insulin is needed in alot of people, the time frame differs for each individual, some people can go 30 years before insulin is needed, some only 3 years. when insulin is used it tends to be very small doses due to people with MODY being very insulin sensitive and also natural insulin production will still exist.

There is always a family history of diabetes although it may have been diagnosed as type 1 or type 2 in other relatives. a feature of people with MODY 3 is they spill glucose into the urine at normal blood glucose levels.

people who have been diagnosed with type 1 who are found to actually have MODY have the chance to stop insulin and go onto tablets. but this must be done under supervision of experienced doctors.

people with MODY are very unlikely to get DKA due to natural insulin production, they may have very high blood gluocse levels but don't get the assosiated high ketone levels.

in the US gene testing for MODY may or may not be covered by insurance, but it can be expensive.
in the UK it is free on the NHS

I have tried to explain in simple terms as I can, if anything is unclear please ask, or any more questions I will try to answer.

some links

http://www.diabetesgenes.org

http://www.childrenwithdiabetes.com/clinic/mody.htm

http://www.phlaunt.com/diabetes/14047009.php

thanks, that was really interesting. i was initially diagnosed as type 2, then type 1. My consultant did a blood test that took 6 weeks to come back and confirmed me to be type 1. he briefly explained about antibodies etc, but did not really understand. can you shed some light on the test I had. i would be interested to know the details now. thanks

ps i have no family history of diabetes

🙂

 

[vince13]

Nikki, No, I don't have any family history of diabetes - looks like I'm the one starting the trend with our family and that worries me for the sake of my daughter and grandchildren.

Can you tell me who do I ask for the tests you have mentioned ? Dr or hospital and are they readily available to patients or do we have to haggle to get them done ?

 

[sofaraway]

thanks, that was really interesting. i was initially diagnosed as type 2, then type 1. My consultant did a blood test that took 6 weeks to come back and confirmed me to be type 1. he briefly explained about antibodies etc, but did not really understand. can you shed some light on the test I had. i would be interested to know the details now. thanks

ps i have no family history of diabetes

🙂

type 1 diabetes is autoimmume, the body turns and attacks it's own beta cells which produce the insulin, it produces anitbodies to do this as if it were fighting a foreign body in your system. So your blood test will have shown positive for these antibodies. if you are positive then you have type 1. type 2 is different the diabetes is due mainly to insulin resistance and will test negative.

It can be difficult sometimes to tell the difference at first when diagnosed in adults as it tends to come on more slowly than in kids and thats why alot of people are diagnosed type 2 to find out later they really have type 1.

hope that helped at bit?

 

[sofaraway]

Nikki, No, I don't have any family history of diabetes - looks like I'm the one starting the trend with our family and that worries me for the sake of my daughter and grandchildren.

Can you tell me who do I ask for the tests you have mentioned ? Dr or hospital and are they readily available to patients or do we have to haggle to get them done ?

I think you should ask the hospital don't think GP's would do them. You should be able to get them done, especially as it's unclear on the type of diabetes that you have. I had a c-peptide done a few months ago whilst admitted to hospital so the DR could see how much insulin I was producing myself. I've never had to have the antibody test as I had genetic testing to determine type of diabetes.

If the tests comes back positive that you are a type 1 then you need to get on insulin now, if you come back negative then you can have a chance to continue with oral medications (you may need insulin in the future as a good % of type 2's do). It'll give you information like if you are at risk of DKA etc.

You have an appointment soon right? I hope you are able to get the answers you need.

 

[vince13]

Hi again Nikki, I see my diabetic nurse at the surgery on the 3rd Feb - can't get to see her before that as she is away and no-one else there is as knowledgeable as she is about Diabetes (even the Dr). I see my Consultant at Taunton hospital on the 16th February when he will review my progress on the meds but feels sure I will be injecting "very soon" as he puts it. He is approachable though and speaks to me as if he appreciates that it is MY body we are talking about !!

 

[tracey w]

type 1 diabetes is autoimmume, the body turns and attacks it's own beta cells which produce the insulin, it produces anitbodies to do this as if it were fighting a foreign body in your system. So your blood test will have shown positive for these antibodies. if you are positive then you have type 1. type 2 is different the diabetes is due mainly to insulin resistance and will test negative.

It can be difficult sometimes to tell the difference at first when diagnosed in adults as it tends to come on more slowly than in kids and thats why alot of people are diagnosed type 2 to find out later they really have type 1.

hope that helped at bit?

yes thank you. im sure it was explained to me, but things are a bit foggy in the beginning arnt they? Just nice to know why things happen isnt it.
🙂