Those of you with LADA,MODY and type1.5

[Steff]

I just was curious to know from those of you who have 1,5 LADA and MODY how they were diagnosed and what their HBA1C was before they started treatment, and how did you know you were that type?Reason im asking if im doubting my type 2 diagnosis some have mentioned to me before am i sure im type 2 or i might be MODY.



Cheers.

 

[smile4loubie]

I was told I was MODY because I could go without taking insulin for weeks and not nreed to go to hospital ( i think) no one ever explained to me why they thought but this is just what they kept bringing up. I was also told by my doc recently I was "a brittle diabetic" meaning my levels yo yo... tbh i think this is just a copout really. I didnt have my hbA1c checked regularly enough to tell you what it was.

 

[Northerner]

Faith (vince13) is Type1.5 and Nikki (sofaraway) knows a lot about MODY. Hoepfully they will stop by and give you some insight.

 

[Steff]

Faith (vince13) is Type1.5 and Nikki (sofaraway) knows a lot about MODY. Hoepfully they will stop by and give you some insight.

Thanks Northerner i was thinking about Nikki .

 

[am64]

keep questioning your dsn cuz you need answers for your hypers !!

 

[Peter C]

Thanks Northerner i was thinking about Nikki .

Hi Steph,
what kind of hypers numbers are you having ? How soon after eating and what are you eating.

Perhaps you might consider going back to basics on food before looking for bigger answers, by putting Jennifer's Smart Advice from the links section into action for a few days.

 

[Steff]

Hi Steph,
what kind of hypers numbers are you having ? How soon after eating and what are you eating.

Perhaps you might consider going back to basics on food before looking for bigger answers, by putting Jennifer's Smart Advice from the links section into action for a few days.

Hypers that i get are a wide range of diffirent numbers can be anythign up to 24+ which is what i had last week, but as low down at 15,They generally occur about 15-20 minutes after i have eaten.

 

[Peter C]

Hypers that i get are a wide range of diffirent numbers can be anythign up to 24+ which is what i had last week, but as low down at 15,They generally occur about 15-20 minutes after i have eaten.

Bgs are going to rise quickly so soon after a meal. Because a characteristic feature of Type 2 Diabetes is that you have lost your Phase One Insulin Response.
Its why they tell us to test at 2 hours mainly so that we are not testing the expected peaks.
The height of the reading at 15 mins will probably just reflect the quality and amount of fast acting carbs eaten.

 

[Steff]

Bgs are going to rise quickly so soon after a meal. Because a characteristic feature of Type 2 Diabetes is that you have lost your Phase One Insulin Response.
Its why they tell us to test at 2 hours mainly so that we are not testing the expected peaks.
The height of the reading at 15 mins will probably just reflect the quality and amount of fast acting carbs eaten.

Ok thank you for that explanation Peter, now i jus need to know why the rate of my hypers is so many.With my pills and my new way of eating surely i should be getting hardly any.

 

[Tezzz]

If I was having hypers like poor Steff suffers I'd be jumping up and down causing a real scene at the doctors or diabetes clinic. I'm surprised how laid back all these healthcare teams appear to be with non insulin dependant diabetics.

I had a real fight on my hands to get the Metformin, because of the high numbers and tiredness.

Keep on at them about your hypers Steff.

 

[Northerner]

This is a blog by an American, but it does give some good information about Type 1 and LADA in adults, and how a correct diagnosis can be made:

http://www.tudiabetes.org/profiles/blogs/bill-of-rights-for-people-with

 

[sofaraway]

Hi Steff, I was diagnosed just before I was 15 with MODY. My A1c was below 7.0 when diagnosed, I was diagnosed after a glucose tolerence test.
If you have MODY then you will have a family history of diabetes, because it is due to a specific genetic mutation, so only 1 gene is affected that can be checked for. Does either your mum or dad have diabetes?
I noticed that you have started on gliclazide, if you have MODY then it will typically work very well for you. I started taking gliclazide when i was 18 and it worked for around 3 years for me. If you have any more questions feel free to ask.

When you see your nurse it's worth asking about different types. The tests that can see if you have type 1 (slow onset, LADA) are the anti GAD antibodies, if positive this will show that your immune system is attacking your beta cells. The other test is c-peptide, when insulin is produced c-peptide is also produced, so this will test will see how much insulin is being produced.Just a thought, have you ever tested for ketones?
I hope you get some answers or your mind is put at rest once you see the nurse.

 

[Steff]

Hi Steff, I was diagnosed just before I was 15 with MODY. My A1c was below 7.0 when diagnosed, I was diagnosed after a glucose tolerence test.
If you have MODY then you will have a family history of diabetes, because it is due to a specific genetic mutation, so only 1 gene is affected that can be checked for. Does either your mum or dad have diabetes?
I noticed that you have started on gliclazide, if you have MODY then it will typically work very well for you. I started taking gliclazide when i was 18 and it worked for around 3 years for me. If you have any more questions feel free to ask.

When you see your nurse it's worth asking about different types. The tests that can see if you have type 1 (slow onset, LADA) are the anti GAD antibodies, if positive this will show that your immune system is attacking your beta cells. The other test is c-peptide, when insulin is produced c-peptide is also produced, so this will test will see how much insulin is being produced.Just a thought, have you ever tested for ketones?
I hope you get some answers or your mind is put at rest once you see the nurse.

Thanks ever so much Nikki, neither my mum or dad have diabetes unless my dad dont know it my mum passed so once again if she did she never knew she had it.Regarding ketones i have tested twice for ketones once was negative and the second time i was carrying +/- 0.5 traces.

 

[Peter C]

Ok thank you for that explanation Peter, now i jus need to know why the rate of my hypers is so many.With my pills and my new way of eating surely i should be getting hardly any.

Hi Steph,

Do a simple experiment.
1. Have your usual breakfast one morning. Test at 20 mins.
2. Next morning have a boiled and nothing else and test again at 20 mins.

 

[Peter C]

If I was having hypers like poor Steff suffers I'd be jumping up and down causing a real scene at the doctors or diabetes clinic. I'm surprised how laid back all these healthcare teams appear to be with non insulin dependant diabetics.

Hi Tez,
have you ever tested at 15 or 20 mins after a meal ?
With what results ?
It would be interesting to see the results if you did.

 

[Tezzz]

Hi Tez,
have you ever tested at 15 or 20 mins after a meal ?
With what results ?
It would be interesting to see the results if you did.

To be honest I never have tested that soon after eating because I think my BG wouldn't reach it's peak by then.

I've only tested one hour and two hours after eating depending on if it's high or low GI food.

I try and stick to lower GI foods and test after 1 - 2 hours if it's something new.

I'll do an experiment on my next day off (weekend) and post the results if you would like.

 

[Steff]

Hi Steph,

Do a simple experiment.
1. Have your usual breakfast one morning. Test at 20 mins.
2. Next morning have a boiled and nothing else and test again at 20 mins.

I will do that tomorrow morning then thursday morning
I guess you meant have a boiled egg and not sweet? as you missed out a word.

 

[Steff]

Hi Peter,

Well i did the following test had my porridge as per yesterday morning and tested 20 minutes later i was 12.8 then this morning i had my boiled egg and nothing else tested after 20 minutes and was 8.3.Does thet show any conclusion to you as you must of asked me to do it for a reason?

Cheers.

 

[Northerner]

Hi Peter,

Well i did the following test had my porridge as per yesterday morning and tested 20 minutes later i was 12.8 then this morning i had my boiled egg and nothing else tested after 20 minutes and was 8.3.Does thet show any conclusion to you as you must of asked me to do it for a reason?

Cheers.

What was your level before each of the breakfasts Steff?

 

[vince13]

Morning Steff, I was diagnosed in April 2008 at 7.2 BS level and was told I was Type 2 and told to watch my diet: in Oct 2008 I was at the Drs having the results of a 6-month review and they found they hadn't done BS levels in the blood tests so the nurse did a prick test and my level was 25 mid morning - I was in hospital 2 hours later. Various tests were run (on c-peptide levels and GAD antibodies) and the endocrinologist said I had been misdiagnosed as Type 2 and was LADA -1.5 or ongoing Type 1 he said.

I was put on Metformin and Gliclazide and they've worked until now. I was getting fasting levels of 6s, then 7s and I'm doing fasting levels now of mostly 8s (the virus I've just had hasn't helped of course) but the meds are being put up to the highest dosage, following which I shall move onto insulin.

Nikki said to me once that the tests which they ran at the hospital are the main ones they do for LADA diagnoses I think - she's more of an expert on understanding it than me.

If you have any doubt about your own situation, ask, ask, ask for more definitive testing on yourself. Good luck !