Possible LADA or MODY

SimonCrox

Well-Known Member
Messages
317
If C-Peptide and GAD negative at start, and more than 12 months on tablets, I would think LADA less likely.
MODY sounds more likely to me, IMHO, but there are several sorts. Knowing which sort of MODY does help pick the correct treatment eg one type repsonds really well to a small dose of sulphonylurea eg gliclazide and another sort needs insulin fairly quickly.
When doing the genetic test for MODY, the first person to be tested by the NHS costs the NHS a bit cos not quite sure which genetic marker one is seeking, but then if testing other family members, it is much cheaper cos just looking for the one abnormal gene that was found in the first person
I would push your consultant to test for which variety of MODY - Exeter is the reference centre
best wishes
 

WhiteCat27

Member
Messages
24
If C-Peptide and GAD negative at start, and more than 12 months on tablets, I would think LADA less likely.
MODY sounds more likely to me, IMHO, but there are several sorts. Knowing which sort of MODY does help pick the correct treatment eg one type repsonds really well to a small dose of sulphonylurea eg gliclazide and another sort needs insulin fairly quickly.
When doing the genetic test for MODY, the first person to be tested by the NHS costs the NHS a bit cos not quite sure which genetic marker one is seeking, but then if testing other family members, it is much cheaper cos just looking for the one abnormal gene that was found in the first person
I would push your consultant to test for which variety of MODY - Exeter is the reference centre
best wishes
I see, that makes sense! I haven't got an appointment yet for the consultant, but when i do, i'll make sure to push for MODY testing. Depending on the test results, we'll go from there! Thank you
 

h884

Well-Known Member
Messages
385
Type of diabetes
Type 1
Treatment type
Pump
Hi WhitcCat27

I was diagnosed as type 2 over 2 years ago. I have other autoimmune conditions and a family history of Type 1 diabetes. Due to the way I presented ( classic symptoms of weight loss about 15 kg, urinary frequency etc) I asked about the possibility of me having type 1 rather than Tyoe 2. Bloods for GAD antibodies were done eventually.

I have just been told today that my GAD antibodies are very high and that I have either Tyoe 1 or Tyoe 1.5.

I hope you get some answers when you see your consultant
 
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milesrf

Well-Known Member
Messages
102
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
spammers, off topic posters, side effects of a stroke
A diabetes groups with more than usual on LADA and MODY:

TuDiabetes

https://tudiabetes.org/

Uses mostly the US method for measuring blood glucose, which gives numbers 18 times those from the UK system.
 
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WhiteCat27

Member
Messages
24
Hi WhitcCat27

I was diagnosed as type 2 over 2 years ago. I have other autoimmune conditions and a family history of Type 1 diabetes. Due to the way I presented ( classic symptoms of weight loss about 15 kg, urinary frequency etc) I asked about the possibility of me having type 1 rather than Tyoe 2. Bloods for GAD antibodies were done eventually.

I have just been told today that my GAD antibodies are very high and that I have either Tyoe 1 or Tyoe 1.5.

I hope you get some answers when you see your consultant
That sounds very similar to my situation, but i'm glad you managed to find out eventually! Hopefully the same will happen with me soon, it can be very frustrating
 

h884

Well-Known Member
Messages
385
Type of diabetes
Type 1
Treatment type
Pump
It was very frustrating. Hopefully you too will get some answers soon
 

WhiteCat27

Member
Messages
24
Update for everyone: I haven't seen the consultant yet but saw my general diabetic nurse. I'm being kept on glicizide and she told me herself about how it will probably kill off the insulin producing beta cells, as she is suspecting it is type 1.5 or mody. But they need to see how i react to it and i'll be having another blood test in March. She also said to me that it's very likely and that she expects me to be on insulin within 18 months, with how fast my diabetes is developing. Just have to wait for the meeting with the consultant now but I thought i'd let everyone know.
 

carnabychick

Well-Known Member
Messages
104
Type of diabetes
Type 2
Treatment type
Insulin
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.

Update no insulin as yet as my practice nurse wouldn’t do it even tho she got a second opinion from the doctor who thought I maybe a slow type 1. Had fructosamine test done and that came back normal which I expected as my blood sugar is always up and down. Anyway my nurse suggested I try no meds and no testing for 3 months, I said nooo. Have an appointment with the actual DSN next week but here’s the thing. I decided to stop my Victoza just to see if my blood sugars where ok and 4 days in, I was 8.6, 3 hours after food and tested my wee in work and it showed ++ on glucose?? Rang DSN and left message to see what advice she can give between now and next week. I get annoyed as I tell docs etc that my blood sugars rise after stopping meds and they never believe me also today’s food was 3 small meals as my tummy still thinks I’m on Victoza !!
 

desidiabulum

Well-Known Member
Messages
704
Update for everyone: I haven't seen the consultant yet but saw my general diabetic nurse. I'm being kept on glicizide and she told me herself about how it will probably kill off the insulin producing beta cells, as she is suspecting it is type 1.5 or mody. But they need to see how i react to it and i'll be having another blood test in March. She also said to me that it's very likely and that she expects me to be on insulin within 18 months, with how fast my diabetes is developing. Just have to wait for the meeting with the consultant now but I thought i'd let everyone know.

Hi @WhiteCat27. I was diagnosed MODY nearly 9 years ago and DN said I would be on insulin within 12 months -- she's still wrong! Some MODY types respond well to gliclazide. If it has had little effect and your BGs are still sky-rocketing despite dietary changes it does sound a lot like LADA, and insulin would be the obvious step (if you're not responding to gliclazide I don't see why they would be worried about your response to insulin). One cautionary note re MODY diagnosis: I have been given 3 different types of MODY diagnosis over the years, and now 2 different doctors at the clinic are writing completely different descriptions of my condition. My attitude has always been to act according to what treatment works rather than what will clearly be an unending struggle to get a definitive diagnosis. The number of MODY variants and diabetes 'types' continues to increase every year. Good luck!
 

carnabychick

Well-Known Member
Messages
104
Type of diabetes
Type 2
Treatment type
Insulin
How do you persuade your DSN to check for LADA. I ask as I am now on novorapid after my blood sugars started going back up after stopping Victoza but I’m only on 2-4 units with each meal and that seems to be working fine. I thought I might hypo or need s larger dose but the small units are working at the mo, although I tend to need only 2 units of a morning as my fasting is around 6 mmols.
 

WhiteCat27

Member
Messages
24
Hi @WhiteCat27. I was diagnosed MODY nearly 9 years ago and DN said I would be on insulin within 12 months -- she's still wrong! Some MODY types respond well to gliclazide. If it has had little effect and your BGs are still sky-rocketing despite dietary changes it does sound a lot like LADA, and insulin would be the obvious step (if you're not responding to gliclazide I don't see why they would be worried about your response to insulin). One cautionary note re MODY diagnosis: I have been given 3 different types of MODY diagnosis over the years, and now 2 different doctors at the clinic are writing completely different descriptions of my condition. My attitude has always been to act according to what treatment works rather than what will clearly be an unending struggle to get a definitive diagnosis. The number of MODY variants and diabetes 'types' continues to increase every year. Good luck!
Oh wow that's so strange but also very interesting to hear! I finally have an appointment with my consultant in Feburary, so we will be discussing all the possible types of MODY or LADA, so hopefully I'll find out in a few months whether I am MODY or not
 

WhiteCat27

Member
Messages
24
How do you persuade your DSN to check for LADA. I ask as I am now on novorapid after my blood sugars started going back up after stopping Victoza but I’m only on 2-4 units with each meal and that seems to be working fine. I thought I might hypo or need s larger dose but the small units are working at the mo, although I tend to need only 2 units of a morning as my fasting is around 6 mmols.
I'm not the one to ask when it comes to insulin amounts, as I only have the basic knowledge of it currently due to my mother being a T1 diabetic, but your blood sugar levels don't seem very high for fasting, especially if you're on insulin? Mine are usually about 8 mmols fasting and I'm only on tablets, so I'm not entirely sure if you have LADA, but i'm not the expert.

As for testing for it, it's something that can be found out through c peptide and GAD blood tests, but if you're already on insulin, then I don't see how your treatment would change, unless it's to up your insulin. The best course of action is to maybe ask for a hba1c to see if your sugar levels have been consistently high over the course of three months. Good luck!
 

carnabychick

Well-Known Member
Messages
104
Type of diabetes
Type 2
Treatment type
Insulin
My problem was in the morning fasting levels are great, then I spike over 10, crash quickly to 4 then rest of the day blood sugars stay high, so it’s helping the spikes somehow which is brill but I need 3 units to keep bloods lowered the rest of the day.
 

carnabychick

Well-Known Member
Messages
104
Type of diabetes
Type 2
Treatment type
Insulin
Saw my DSN today who was pleasantly surprised that I was doing well with novorapid with no hypos and has asked if she can mention me to the consultants as she wonders if I have a genetic form of diabetes not type 2. Apparently I’m the only patient she’s tried using just novorapid on and was concerned at first, but now she’s happy, given me more test strips to use and I can carry on long term yay. A good birthday pressie
 
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Zilsniggy

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Messages
428
Type of diabetes
Type 2
Treatment type
Insulin
I just wonder how many people are damaging their health by years of misdiagnosis,

Ive been treated for T2 for 18 years! Only now has anyone thought I may not be T2. I'm your classic thin diabetic(or at least I was on diagnosis). Had tests done just before Christmas, waited on tenterhooks all over Christmas and New Year.........no result forthcoming because my local hospital managed to lose my bloods.........so now waiting for appointment to have them done again! No urgency, not even an apology. I'd never have found this out until my next appoinment but I took it on myself to try to find out what had happened.
 

Zilsniggy

Well-Known Member
Messages
428
Type of diabetes
Type 2
Treatment type
Insulin
The diabetic specialist nurses seem to be much better than the ones at the doctors,

That's usually because they have far more training and interest in the condition, unlike Practice nurses, who are likely to be juggling asthma, diabetes, family planning, travel health and any other clinic their GP decides they want.......jacks of all trades come to mind, masters of none!
 

carnabychick

Well-Known Member
Messages
104
Type of diabetes
Type 2
Treatment type
Insulin
That's usually because they have far more training and interest in the condition, unlike Practice nurses, who are likely to be juggling asthma, diabetes, family planning, travel health and any other clinic their GP decides they want.......jacks of all trades come to mind, masters of none!

I agree, my practice nurse suggested no meds and no testing for 3 months!! DSN instead started me on novorapid which is brill and now I’m used to mealtime injections and no tummy problems for first time in years.
 

Zilsniggy

Well-Known Member
Messages
428
Type of diabetes
Type 2
Treatment type
Insulin
I agree, my practice nurse suggested no meds and no testing for 3 months!! DSN instead started me on novorapid which is brill and now I’m used to mealtime injections and no tummy problems for first time in years.

yes, that's why DSNs are the specialists, don't get me wrong, some are not perfect, but they have a helluva lot more experience that your average Practice Nurse.
 

carnabychick

Well-Known Member
Messages
104
Type of diabetes
Type 2
Treatment type
Insulin
Yeah she is really good, my practice nurse still ain’t done my foot check
 

WhiteCat27

Member
Messages
24
Hi all another update as I've been to see the consultant earlier today. If I am honest, it was a very confusing experience. He didn't tell me everything very clearly. But I've been put on new medicine to try for a month (Forxiga) alongside my other ones which now looking at the side effects, I'm not really looking forward to as I've already experienced most of them due to high blood sugar levels!

I'll also be getting tested for MODY, but the consultant said himself that it's unlikely my mum has it as it's clear she has type 1, so how would I have it, as it's passed from parent to child through a gene mutation? Very confusing.

He pretty much said that I either have MODY or type 2, which contradicts everything I've been told, as at least three diabetic nurses have told me they think it's likely I have LADA or MODY, the specialist diabetic nurse made it clear to me that I in no way can be a type 2 due to my age and although I am overweight, it's not to the point of it causing type 2. The consultant even said my sugar levels weren't that bad despite the hba1c being 70, a massive increase from the 47 I had in May.

Anyway I thought I'd update you all as you've all been very helpful with your advice and maybe my current situation could help someone else out!