Possible LADA or MODY

[WhiteCat27]

Hi all, i'm new on the forum and decided to make a post after doing research on LADA/MODY and wanted to hear about your own experiences.

I'm 22 and was diagnosed with diabetes last year at 20, with a hba1c of 50 (previously I had been prediabetic and displaying symptoms, which was why they diagnosed me when I reached 50). However I was left in a bit of a limbo, as I didn't fit the classic type 2, with both my age and weight etc. I was put on metformin. I had a c peptide test and GAD one privately which all came back normal.

I had hospital appointments where the consultant told me I most likely have MODY, the genetic form of diabetes, as I have a strong family history of diabetes, my mum being a type 1 and my grandmother on her side/my grandmother's siblings being type 2. However they didn't want to test for it, as my hba1c went down to 47.

It's been just over a year now since I've been diagnosed and my sugar levels have gone sky rocketing up. I wasn't given a blood testing machine of mine at the time so I used my mum's when I was having quite bad symptoms and we saw I was up to 19! I'm on 2000mg of metformin a day, so this shouldn't be happening. Went back to the doctor's, had some blood tests done, got put on 40mg of gliclazide a day for a month alongside my metformin and got refered to a diabetic nurse.

My hba1c has gone up from 47 in May to 70 this month. The nurse had told me that she'll be asking the consultant to test me for MODY, but she also thinks LADA is a possiblity, especially with my mum being a type 1. Right now is just a waiting game of my next appointment with the consultant, but I was curious about others experiences and how your LADA got diagnosed/progressed. Sorry for the long post and thank you!!

 

[Japes]

Welcome to the forum @WhiteCat27 ! I'll tag @daisy1 for her helpful post for newcomers.

I'm in my 50s, diagnosed T2 initially as I presented as the classic morbidly obese middle-aged woman who the doctor wrongly assumed was eating badly and doing no exercise at all. (The facts I'd lost 4 stone without trying prior to this was ignored!) I got my Hba1c down from 144 to 57 with diet changes and Metformin, added much more exercise in when my blood sugars began creeping back up again, and it all worked really well for a couple of years. Until it didn't.

Back to being accused of not trying hard enough with diet and exercising, ("What part of no carbs at all, halving my body weight and walking 8 - 10 miles most days is not trying hard enough?" I asked in maybe not the politest of tones.) And a refusal to see that GP again.

Fortunately, a new GP believed my description of the progression and how I was doing my best He began digging around further into my history and diagnosis, at the point my self-funded meter was showing almost consistent 20s and nothing was bringing it down, and my Hba1c was firmly back in the 100s again. I got referred to the hospital where fortunately my ketones showed up in a test for the first time properly, induced hysteria in clinic nurses, more measured responses from consultants, but which then got me all the tests which came back positive and LADA was then diagnosed. So, three years, just over, from T2 diagnosis to LADA.

 

[Daibell]

Hi. Unless you can see specific MODY symptoms I would think about LADA being a strong possibility and ask for a C-peptide test. You could be going thru the honeymoon period. I was started on Gliclazide when my BS wouldn't come under control and ended up on 320 mg. 40 mg is a very low dose. It could be increased by the GP if needed, but if you are LADA then the right solution will be insulin sooner rather than later if tablets fail. I was on Gliclazide for far too long before insulin as my GP refused to accept I was T1 and initially refused me insulin. It sounds like your DN is taking the right sort of action.

 

[KK123]

Hi. Unless you can see specific MODY symptoms I would think about LADA being a strong possibility and ask for a C-peptide test. You could be going thru the honeymoon period. I was started on Gliclazide when my BS wouldn't come under control and ended up on 320 mg. 40 mg is a very low dose. It could be increased by the GP if needed, but if you are LADA then the right solution will be insulin sooner rather than later if tablets fail. I was on Gliclazide for far too long before insulin as my GP refused to accept I was T1 and initially refused me insulin. It sounds like your DN is taking the right sort of action.

Hi Diabell,
Only because he paid for a GAD and C Peptide test himself though. Once again they shout 'type 2' based on who knows what half the time, when will all people be properly tested on diagnosis, I just wonder how many people are damaging their health by years of misdiagnosis, @Japes for example. I was luckily diagnosed as type 1 after these tests but 3 years previously had been diagnosed as pre diabetes (again, not fitting the profile at all apart from age) and left to get on with it, I hadn't found this forum and had just been told we'll see what happens, that was it until 3 years later.... I wonder now whether that was some honeymoon period of type 1 or LADA, no tests at all done back then. x

 

[daisy1]

@WhiteCat27
Hello and welcome to the Forum Here is the Basic Information we give to new members and I hope you will find it useful and interesting.

BASIC INFORMATION FOR NEW MEMBERS

Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you'll find well over 235,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.

There are two approaches to controlling your carbs:

• Reduce your carbohydrate intake
• Choose ‘better’ carbohydrates

Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes.

Over 145,000 people have taken part in the Low Carb Program - a 10 week structured education course that is helping people lose weight and reduce medication dependency by explaining the science behind carbs, insulin and GI.

Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 8.5 mmol/l

Blood glucose ranges for type 1 diabetes (adults)

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 9 mmol/l

Blood glucose ranges for type 1 diabetes (children)

• Before meals: 4 to 8 mmol/l
• 2 hours after meals: under 10 mmol/l

However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips

The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

• structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
• self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to blood glucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic.

Note: This post has been edited from Sue/Ken's post to include up to date information.
Take part in Diabetes.co.uk digital education programs and improve your understanding. Most of these are free.

• Low Carb Program - it's made front-page news of the New Scientist and The Times. Developed with 20,000 people with type 2 diabetes; 96% of people who take part recommend it... find out why
  
  
• Hypo Program - improve your understanding of hypos. There's a version for people with diabetes, parents/guardians of children with type 1, children with type 1 diabetes, teachers and HCPs.
  

 

[WhiteCat27]

Welcome to the forum @WhiteCat27 ! I'll tag @daisy1 for her helpful post for newcomers.

I'm in my 50s, diagnosed T2 initially as I presented as the classic morbidly obese middles aged woman who the doctor wrongly assumed was eating badly and doing no exercise at all. (The facts I'd lost 4 stone without trying prior to this was ignored!) I got my Hba1c down from 144 to 57 with diet changes and Metformin, added much more exercise in when my blood sugars began creeping back up again, and it all worked really well for a couple of years. Until it didn't.

Back to being accused of not trying hard enough with diet and exercising, ("What part of no carbs at all, halving my body weight and walking 8 - 10 miles most days is not trying hard enough?" I asked in maybe not the politest of tones.) And a refusal to see that GP again.

Fortunately, a new GP believed my description of the progression and how I was doing my best He began digging around further into my history and diagnosis, at the point my self-funded meter was showing we almost consistent 20s and nothing was bringing it down, and my Hba1c was firmly back in the 100s again. I got referred to the hospital where fortunately my ketones showed up in a test for the first time properly, induced hysteria in clinic nurses, more measured responses from consultants, but which then got me all the tests which came back positive and LADA was then diagnosed. So, three years, just over, from T2 diagnosis to LADA.

Thank you for welcoming me! Oh dear it sounds like you had a horrible time. GPs not listening to patients with diabetes seems to be a common thing. Despite my consultant saying I don't have normal type 2, my regular GP and nurse (apart from two) was treating me as type 2 and it was very frustrating, but I couldn't do anything as I'd been left in a limbo until now. Thankfully my diabetic nurse (which I wasn't even given until now) has been very helpful and one of the first people to properly assess me.

 

[WhiteCat27]

Hi. Unless you can see specific MODY symptoms I would think about LADA being a strong possibility and ask for a C-peptide test. You could be going thru the honeymoon period. I was started on Gliclazide when my BS wouldn't come under control and ended up on 320 mg. 40 mg is a very low dose. It could be increased by the GP if needed, but if you are LADA then the right solution will be insulin sooner rather than later if tablets fail. I was on Gliclazide for far too long before insulin as my GP refused to accept I was T1 and initially refused me insulin. It sounds like your DN is taking the right sort of action.

I do fit the symptoms of MODY (being diagnosed under 25, diabetes in three or more generations as some examples) but my DN did also say I fit LADA. I saw in the letter she sent to the consultant that she's asked him whether I should go on insulin, but because with certain types of the MODY gene, I could be too sensitive to insulin if I have MODY. So they really want to test that first, which should've been done anyway the DN said. Your experience does sound similar to mine though, so it may be worth discussing when I have my consultant appointment.

 

[WhiteCat27]

Hi Diabell,
Only because he paid for a GAD and C Peptide test himself though. Once again they shout 'type 2' based on who knows what half the time, when will all people be properly tested on diagnosis, I just wonder how many people are damaging their health by years of misdiagnosis, @Japes for example. I was luckily diagnosed as type 1 after these tests but 3 years previously had been diagnosed as pre diabetes (again, not fitting the profile at all apart from age) and left to get on with it, I hadn't found this forum and had just been told we'll see what happens, that was it until 3 years later.... I wonder now whether that was some honeymoon period of type 1 or LADA, no tests at all done back then. x

That's very similar to what happened to me. It felt like nobody was taking me seriously until I met this very good diabetic nurse. She said to me that my consultant should've been keeping an eye on me more, since I wasn't a normal diabetic. I wasn't even given a machine of own or contact details for a diabetic nurse! It's such a shame because if I had been worse, I could've ended up with complications.

 

[Daibell]

Hi Diabell,
Only because he paid for a GAD and C Peptide test himself though. Once again they shout 'type 2' based on who knows what half the time, when will all people be properly tested on diagnosis, I just wonder how many people are damaging their health by years of misdiagnosis, @Japes for example. I was luckily diagnosed as type 1 after these tests but 3 years previously had been diagnosed as pre diabetes (again, not fitting the profile at all apart from age) and left to get on with it, I hadn't found this forum and had just been told we'll see what happens, that was it until 3 years later.... I wonder now whether that was some honeymoon period of type 1 or LADA, no tests at all done back then. x

Hi again. I had my GAD and c-peptide done privately as well. There is a big issue with GPs just guessing T2 and not expecting anything else. I was stick thin when diagnosed and my first diabetic GP just said to keep up losing weight. He diagnosed me with a urine stick in the surgery! My second diabetes GP arrogantly said I was NOT T1 when I questioned my earlier T2 diagnosis. She said she was the expert and had 500 diabetes patients so knew what she was doing. I was told insulin was a last resort when I asked for it. I resigned from DUK a few years back as they never accepted that LADA existed. To be fair the situation is improving since my 'diagnosis' 15 years ago. LADA is more commonly understood and one day the experts will realise that a good chunk of the slim T2s (15%?) are actually LADA which a c-peptide test would reveal.

 

[carnabychick]

Hi I’ve always wondered if I was MODY not type 2 as i had high blood sugars with my first child and as my 20s progressed, I was constantly tired, getting books/cysts. I was never checked for diabetes until I felt unwell at age 42 and the nurse where I worked checked my blood sugar and it was 22 mmols, rushed doc who checked and again it was about the same level so he put me on highest dose metformin. However I couldn’t tolerate even the SR version so many meds later I was put on victoza. This worked great at first, list weight, blood sugars stayed level etc. Now I’m exhausted constantly and I’m tomorrow starting a basal insulin as I’m fed up with all the gastro side effects and 3 days from stopping victoza, my blood sugars are rising again. Luckily I have a good DSN as the practice nurse didn’t want to put me on insulin and even suggested no meds and no testing for 3 months . I said no as I know I would become ill again!! But unless I pay I doubt I will ever find out if I’m mody, lads or normal type 2

 

[WhiteCat27]

Hi I’ve always wondered if I was MODY not type 2 as i had high blood sugars with my first child and as my 20s progressed, I was constantly tired, getting books/cysts. I was never checked for diabetes until I felt unwell at age 42 and the nurse where I worked checked my blood sugar and it was 22 mmols, rushed doc who checked and again it was about the same level so he put me on highest dose metformin. However I couldn’t tolerate even the SR version so many meds later I was put on victoza. This worked great at first, list weight, blood sugars stayed level etc. Now I’m exhausted constantly and I’m tomorrow starting a basal insulin as I’m fed up with all the gastro side effects and 3 days from stopping victoza, my blood sugars are rising again. Luckily I have a good DSN as the practice nurse didn’t want to put me on insulin and even suggested no meds and no testing for 3 months . I said no as I know I would become ill again!! But unless I pay I doubt I will ever find out if I’m mody, lads or normal type 2

I believe that certain tests can be done to find out on the NHS. MODY is a rare genetic form of diabetes, which usually gets diagnosed before 25 and there is a strong family history of diabetes, usually in 3 or more generations. This can only be found out through a special blood test where the blood sample is sent to a place in Exeter and they check the DNA to see if there is any MODY genes.

LADA is slow developing type 1 in adults, which can be found out through a c peptide test and/or a GAD test. It may be worth discussing with your diabetic nurse if you think you have LADA, since it sounds like you could! I'm being left in a similar situation, but i will have to wait until i see my consultant to find out if i'll be getting tested for MODY or not.

 

[carnabychick]

The DSN said it sounded like I had had slow developing type 2??? So I doubt they are gonna check me for anything lol. I am now 49 and have neuropathy in ny right thigh and also inflammation of a bursitis in the hip so need 3 monthly steroids to ease the pain as well as gabapentin . I’m hoping that insulin may help delay any more damage. I was pro oral meds and am now very disillusioned.

 

[legolgel]

Thank you for welcoming me! Oh dear it sounds like you had a horrible time. GPs not listening to patients with diabetes seems to be a common thing. Despite my consultant saying I don't have normal type 2, my regular GP and nurse (apart from two) was treating me as type 2 and it was very frustrating, but I couldn't do anything as I'd been left in a limbo until now. Thankfully my diabetic nurse (which I wasn't even given until now) has been very helpful and one of the first people to properly assess me.

Many doctors tends to behave like that, like mine said once to me: they know much more because they studied more time opening dead people, and then I answered : but it seems you forget everything when somebody alive is talking to you! He got offended but is the truth.

 

[carnabychick]

Update - my diabetic nurse at doctors disagreed with the DSN and won’t change me over to insulin . Spoke to a doctor at same time as the nurse wouldn’t listen to why I wanted to try insulin and I’m hopefully getting referred to a consultant as doc thinks I maybe type 1???? So carrying on with lower dose Victoza and recording my readings until I get my blood results for hba1c etc back in the 4th. May contact DSN after Christmas as she even told the practice nurse to start me on insulin.

 

[Antje77]

one day the experts will realise that a good chunk of the slim T2s (15%?) are actually LADA which a c-peptide test would reveal.

Don't forget that being fat doesn't protect you from getting T1. Chances on a correct diagnosis are even smaller when overweight. C-peptide often isn't conclusive, as T2's often produce less and less insulin over time, and LADA progresses slowly, so there might be insulin production for a long time.
I've just had tests for C-peptide and anti GAD. C-peptide isn't conclusive, according to the specialist, could be T1 or T2, so we're waiting for results of the anti-GAD. If positive, I'm T1, if negative I could still be T1 or T2.

 

[WhiteCat27]

Don't forget that being fat doesn't protect you from getting T1. Chances on a correct diagnosis are even smaller when overweight. C-peptide often isn't conclusive, as T2's often produce less and less insulin over time, and LADA progresses slowly, so there might be insulin production for a long time.
I've just had tests for C-peptide and anti GAD. C-peptide isn't conclusive, according to the specialist, could be T1 or T2, so we're waiting for results of the anti-GAD. If positive, I'm T1, if negative I could still be T1 or T2.

When i originally had my tests done, it was with a private consultant who if i'm honest, didn't seem to care. He just brushed me aside as having type 2 which came from either PCOS (which i knew i didn't have and the tests/ultrasounds proved it) or Cushing's disease, which again was proved incorrect. It was frustrating because I didn't have the symptoms of either and he never responded when the NHS told him my results for all of those were negative.

Hopefully if i can get a c peptide test again along with the GAD one, we can find out what's going on. I have noticed that even if i accidentally miss just one dose of my medicine, my sugar levels go up really high, even when not eating a high carb or sugar meal.

 

[WhiteCat27]

Update - my diabetic nurse at doctors disagreed with the DSN and won’t change me over to insulin . Spoke to a doctor at same time as the nurse wouldn’t listen to why I wanted to try insulin and I’m hopefully getting referred to a consultant as doc thinks I maybe type 1???? So carrying on with lower dose Victoza and recording my readings until I get my blood results for hba1c etc back in the 4th. May contact DSN after Christmas as she even told the practice nurse to start me on insulin.

Hopefully you'll be taken seriously from now on. The diabetic specialist nurses seem to be much better than the ones at the doctors, as my first meeting with a DSN, she finally confirmed that i didn't have regular type 1 or type 2. It's a shame really this happens to so many diabetic patients

 

[WhiteCat27]

Many doctors tends to behave like that, like mine said once to me: they know much more because they studied more time opening dead people, and then I answered : but it seems you forget everything when somebody alive is talking to you! He got offended but is the truth.

It seems like some doctors like to look down on patients. I once had a doctor tell me off for using a medical term! There's nothing wrong with patients knowing more about themselves and their possible condition than the doctors, since they are the ones going through it after all

 

[carnabychick]

Hopefully you'll be taken seriously from now on. The diabetic specialist nurses seem to be much better than the ones at the doctors, as my first meeting with a DSN, she finally confirmed that i didn't have regular type 1 or type 2. It's a shame really this happens to so many diabetic patients

Depends if I ever get my blood results back!! Practice nurse has took 2 lots, one she forgot to label and another lot that came back as unsuitable. Now going for blood test no3 on the 2nd with a different nurse ‍

 

[carnabychick]

Depends if I ever get my blood results back!! Practice nurse has took 2 lots, one she forgot to label and another lot that came back as unsuitable. Now going for blood test no3 on the 2nd with a different nurse ‍

Oh and texted the DSN to let her know that the other nurse wouldn’t let me start insulin!