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the lesser spotted MODY......

T

the_anticarb

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Is anyone else on here a MODY? It can be lonely enough being diabetic when none of your friends are, but being a different type of diabetic as well can be double lonely.

If you are, is that just suspected or confirmed through genetic testing?

Were you misdiagnosed before being diagnosed as such?

I got diabetes aged 15 but didn't need insulin for 8 years. My mum and brother have it too both got it young like me. I'm very carb sensitive, don't need much insulin just to maintain me when my carbs are low just a small background dose but if I eat a lot of carbs my body needs loads and loads of insulin.

I have been told I am type 2 and type 1 at different times in my life prior to this diagnosis. One consultant even admitted I was neither, but said he couldn't diagnose me! eventually I had the good fortune to see a genetic dsn at east sussex who referred me to the monogenic clinic, but when I moved to manchester they didn't have one of these so insisted I was type 2. (as a default option, as I was not type 1). But at my GPs I'm still listed as t1. But I don't see why I should have to be told I'm something I'm not, just because MODY is pretty rare so not recognised as a separate category by a lot of the medical profession, even diabetes specialists.

A lot of people don't understand MODY, the acronym maturity onset diabetes of the young is very misleading as that just sounds like it's t2 in a young person, and it's not, it's a completely different cause, due to a single faulty dominant gene which as far as I am aware interferes with the message to tell the beta cells to produce insulin.

Sadly this means I have a 50% chance of passing on the condition to my children, although it does not usually manifest until adolescence.

I've only met one other person with the same diabetes as me (in real life, not on the forum) but some people may have this type but not know it. It is supposed to affect 1-5% of the diabetic population.

So, if you are a mody or think you may be, post!
 
the_anticarb said:
Is anyone else on here a MODY? It can be lonely enough being diabetic when none of your friends are, but being a different type of diabetic as well can be double lonely.

If you are, is that just suspected or confirmed through genetic testing?

Were you misdiagnosed before being diagnosed as such?

I got diabetes aged 15 but didn't need insulin for 8 years. My mum and brother have it too both got it young like me. I'm very carb sensitive, don't need much insulin just to maintain me when my carbs are low just a small background dose but if I eat a lot of carbs my body needs loads and loads of insulin.

I have been told I am type 2 and type 1 at different times in my life prior to this diagnosis. One consultant even admitted I was neither, but said he couldn't diagnose me! eventually I had the good fortune to see a genetic dsn at east sussex who referred me to the monogenic clinic, but when I moved to manchester they didn't have one of these so insisted I was type 2. (as a default option, as I was not type 1). But at my GPs I'm still listed as t1. But I don't see why I should have to be told I'm something I'm not, just because MODY is pretty rare so not recognised as a separate category by a lot of the medical profession, even diabetes specialists.

A lot of people don't understand MODY, the acronym maturity onset diabetes of the young is very misleading as that just sounds like it's t2 in a young person, and it's not, it's a completely different cause, due to a single faulty dominant gene which as far as I am aware interferes with the message to tell the beta cells to produce insulin.

Sadly this means I have a 50% chance of passing on the condition to my children, although it does not usually manifest until adolescence.

I've only met one other person with the same diabetes as me (in real life, not on the forum) but some people may have this type but not know it. It is supposed to affect 1-5% of the diabetic population.

So, if you are a mody or think you may be, post!
Click to expand...

Hi AC I am not a MODY ( unless it stands for ( Moody old diabetic Yoyo :lol: ) thanks for sharing your diabetes condition, as I seriously did not know about MODY and the faulty gene :( Thanks for sharing and I hope someone will post very soon. RRB ps what abriliiant title, the lesser spotted MODY :clap:
 
hi anti_carb,

im possibly mody. my gp and consultant suspect i am. but here the plot thickens... i was sent to the hospital in bradford that deals with mody and they do the testing. but, when i got there (waited an hour in a boiling hot waiting room to see an old bag of a doc) they refused to test me as "its too expensive" so i asked them why they think its acceptible to waste my time and doc says she just wanted a chat! a chat?!? i told her "you couldve done that over the phone". i was livid. so i made an appointment to see the so called diabetes doc at my surgery (double appointment.) and sat and ranted at him for 20 minutes. after my rant he asked me if id be prepared to go back for testing after my next hba1c test, i told him no i bloody well am not. so, as you can see, im still none the wiser and still being treated as type 2.

regards,

wendle x
 
wendle said:
hi anti_carb,

im possibly mody. my gp and consultant suspect i am. but here the plot thickens... i was sent to the hospital in bradford that deals with mody and they do the testing. but, when i got there (waited an hour in a boiling hot waiting room to see an old bag of a doc) they refused to test me as "its too expensive" so i asked them why they think its acceptible to waste my time and doc says she just wanted a chat! a chat?!? i told her "you couldve done that over the phone". i was livid. so i made an appointment to see the so called diabetes doc at my surgery (double appointment.) and sat and ranted at him for 20 minutes. after my rant he asked me if id be prepared to go back for testing after my next hba1c test, i told him no i bloody well am not. so, as you can see, im still none the wiser and still being treated as type 2.

regards,

wendle x
Click to expand...

OMG, know wonder you are so mad :x All I can say is I sincerely hope things improve dramacially for you. What a big frustrating let down for you. It beggars belief :crazy: With my very best wishes RRB
 
wendle said:
thanks rrb. i guess its just another obstacle to overcome eh? :lol:
i reckon ill adopt your accronym. sod the docs.

wendle x
Click to expand...

A new club in the making maybe :?: :P Yep, as you said, sod the docs, what do they know anyhow :wink: Take care and don't let the bbbbbbb's get you down. RRB
 
:lol:
yeh. but ill tell you something, ive learnt more from coming on here and reading peoples posts than what the docs have told me. i never even knew about low carbing, and my docs not happy about me doing that. even my nurse said, in a rather sarcastic way, "oh well you might be able to come of your tablets" so i said "thats the plan!" its almost like they want us to be all pathetic and suffering and not bother to take control of our own condition. that really icks me off.

wendle x
 
I was diagnosed as T2 about 15 years ago - when I was 19. I've never had any tests to determine if I am anything other than T2 (MODY/LADA, etc...)

I'd love to know more about MODY, and how i would go about getting tested for it. Also - how does the treatment for MODY differ to that of T2 Diabetes?
 
Patch said:
I was diagnosed as T2 about 15 years ago - when I was 19. I've never had any tests to determine if I am anything other than T2 (MODY/LADA, etc...)

I'd love to know more about MODY, and how i would go about getting tested for it. Also - how does the treatment for MODY differ to that of T2 Diabetes?
Click to expand...

Hi Patch

I'm not sure the treatment does differ that much, some types of MODY do better on tablets others like me will go onto insulin after a matter of time.

Do you know if you are insulin resistant? (Are you taking large amounts of insulin?) as MODY isn't usually associated with insulin resistance.
If your hCP is not enlightened as to MODY you can ask to be referred to a monogenic clinic, or at least to have your blood sent to exeter for testing.
Unfortunatley not all MODYs can be identified by the faulty gene so me for example I'm sure I have it and came up really high on the probability counter, but around 1 in 7 people they haven't identified the gene yet. Frustratingly this means my hospital will only conclude I am 'suspected MODY' and keep classifying me as 'T2 but functionally T1' (as I'm not producing my own insulin). That covers all bases, the only thing I've not yet been diagnosed with is LADA!
 
Hi there, although I was eventually diagnosed with LADA or type 1.5 (basically a slow onset of type 1 with typically a specific antibody called GAD for short).
I did go through months with the medics scratching their heads. I was tested for MODY 1 + 3 because the medics were intrigued and although intially told me I was type 2 because of strong hereditary factor, two type 2 Diabetic parents but I was (a) not typically 50+ and (b) slim, fit and no linked typical probe e.g high blood pressure. In hindsight there's several shades of Diabetes from what I learned here

.
Both MODY tests were negative. But here I am, the first of my kind in a vast family! There are definiteky MODY types and various types that don't fit the standard criteria. I'm sure you will find kindred spirits her on the forum. Always interesting to read about MODY types so please do share your experiences :)
 
Hi anti-carb,
I was originally diagnosed with type 2 when I was 16, my medication was originally Tolbutamide which worked well for ages. Over the last 5 years my control has steadily deteriorated and I have been taking more and more medication which didnt seem to help much. Last year I was tested positive for MODY H1A1 alpha, and was started on Glargine Insulin.
My overal control is quite erratic at the moment, my fasting levels in the morning are good 6-7, but it peaks throughout the day (as I am writing this my level is 19, 2 hours after lunch).
I am interested by your statement "I'm very carb sensitive, don't need much insulin just to maintain me when my carbs are low just a small background dose but if I eat a lot of carbs my body needs loads and loads of insulin." I am wondering if this applies to me?
It is lonely being a MODY, when even most medical professionals dont know what it is. My doctor recently admitted to me that he assumed I must have been massivly overweight when I was young to have been diagnosed Type 2 (I wasnt!).

I havent met any MODY's before so it would be good to talk.
 
Hi Lammy,
We may be a minority among diabetics but there are more of us around than you might think! -- take a look at the recent 'Newly Diagnosed with MODY' thread. I'm lucky enough not to be on insulin so can't advise on your precise issue, but MODY people often have more erratic sugar levels. Keep posting on the forum and I'm sure you'll hear from more of us MODY people.
 
Hi, yes it is lonely being a MODY. Manchester Diabetes Centre still refuse to recognise me as one, despite the fact that I was diagnosed with MODY by my consultant in another city, and got it as a teenager, as did my mother and brother. But because they cant' identify the gene they insist on classifying me as type 2. Well I don't. I am MODY and proud! My doctor said it doesn't make any difference as I am treated the same, but it does to me and it will do to my children who have a 50% chance of inheriting it, unlike t2 which I know is partly heritable but not 50% like MODY.
 
I had not heard about MODY until somone on another diabetic site mentioned I could be MODY. Diabetes in my family only affects the females though. My grandmother was diabetic, my Mum and two of her surviving sisters are diabetic, I have just been diagnosed type 2, my second youngest sister has been diagosed as borderline, she is 47 and my youngest sister (45) has had bouts of higher than normal sugar levels since being a child but is still only borderline. My mum and her sisters are all Insulin dependent, as was my Grandmother. My grandmother died of a diabetic coma in 1965. I have no idea if it is MODY type though, as I mentioned my Mum and my Aunts are on high levels of insulin which possibly indicates none MODY type. I am on metformin, but I would not say my levels have ever been seriously high, they average about 14, post 2 hour food the highest being 18.
 
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