Do I actually have MODY?

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Georgia Hasell

Georgia Hasell

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Relationship to Diabetes
Type 1
I'm Georgia, I'm 16 and I've had type 1 diabetes for nearly 4 years. I've been taking insulin injections ever since I was diagnosed, but I'm constantly told by the doctors that I am an anomaly of type 1 diabetes as I'm on nearly any insulin at all. At first the doctors said it was a 'honeymoon period' where my pancreas was kicking out the last bits of insulin it could. There was a period of about a month where I was only on 0.5 units of lantus at night! To this very day my insulin requirements rapidly change constantly, and I'm on hardly any insulin, at a ratio of 1 unit for every 70grams of carbohydrates I eat, despite it being 4 years since I was diagnosed. For instance today I ate 240grams of carbohydrates and had only 6 units of insulin, however I had 5 hypos! I am very sporty, and I weightlift daily and also play rugby regularly, however I don't believe that the amount of sport I do is enough to cause the amount of hypos I have as well as my extremely low insulin needs. After doing some research I wondered if perhaps I had MODY, as this would explain my fluctuating insulin needs as well as the very little amount of insulin I need. I've always had a lot of hypos, and I was wondering if perhaps this would be why ( as in taking insulin when I don't need to be ). I would really appreciate any help or advice from anyone that is going through this, or might know about what's going on .
 
Hi Georgia, and welcome 🙂

I don't think I can answer your question about MODY, as I don't know much about that, I'm afraid - but I can tell you that you're not alone in being an anomaly as far as diabetes is concerned. There are several people here who are very sensitive to insulin, myself included - I don't have as little as you, but then I have hardly any exercise (due to another illness which requires me not to exercise) and I suspect if I were playing sport every day I would need virtually no insulin too. Consultants don't know quite what to make of me, but on this forum I've found other people with similar levels of insulin sensitivity. We think that people with diabetes are too often labelled one type or another when really it's more of a spectrum.

Northerner, who is our admin here, will probably be along soon and tell you that he has been able to stop using Lantus altogether (he will I'm sure also have lots of other good advice and info).

You have my sympathy about the hypos - I have large numbers of them as well, and I just can't manage to adjust my insulin to stop having them - the most I've been able to do is to try to have more 3s and fewer 1s and 2s. I'm waiting for the manufacturers to start making quarter unit pens ... 🙄
 
Welcome to the forum! I'm afraid I can't help much as I've only just started on insulin but Im sure someone will be able to reassure you. I think there are genetic tests to see if you have MODY, have you discussed it with your consultant?

I wouldn't recommend stopping your insulin without talking it through with whoever oversees your care as you could very quickly become very unwell.

I hope you get some answers and advice soon!
 
Georgia Hasell said:
I'm Georgia, I'm 16 and I've had type 1 diabetes for nearly 4 years. I've been taking insulin injections ever since I was diagnosed, but I'm constantly told by the doctors that I am an anomaly of type 1 diabetes as I'm on nearly any insulin at all. At first the doctors said it was a 'honeymoon period' where my pancreas was kicking out the last bits of insulin it could. There was a period of about a month where I was only on 0.5 units of lantus at night! To this very day my insulin requirements rapidly change constantly, and I'm on hardly any insulin, at a ratio of 1 unit for every 70grams of carbohydrates I eat, despite it being 4 years since I was diagnosed. For instance today I ate 240grams of carbohydrates and had only 6 units of insulin, however I had 5 hypos! I am very sporty, and I weightlift daily and also play rugby regularly, however I don't believe that the amount of sport I do is enough to cause the amount of hypos I have as well as my extremely low insulin needs. After doing some research I wondered if perhaps I had MODY, as this would explain my fluctuating insulin needs as well as the very little amount of insulin I need. I've always had a lot of hypos, and I was wondering if perhaps this would be why ( as in taking insulin when I don't need to be ). I would really appreciate any help or advice from anyone that is going through this, or might know about what's going on .
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Hi Georgia, welcome to the forum 🙂 Sorry to hear you are having difficulties. We have had members here in the past who were on very small amounts of insulin, and the best solution for them was to go on to an insulin pump - has this been suggested at all? You can deliver insulin in much smaller doses, and it is far more controllable than injections. I'm personally on 14 units of novorapid a day at the moment (also do quite a bit of exercise), but I stopped using lantus over 4 years ago because it was giving me hypos, and I discovered I just didn't need it any more (I was originally on 20 units of lantus when diagnosed! 😱) So, it's more than possible that your pancreas is still working to some extent, just not as well as a non-diabetic muggle's! It's rare, but there are a few of us around! 🙂 I remember seeing a TV programme about a rugby league player who hardly used any insulin - you can watch it here: http://www.bbc.co.uk/sport/get-inspired/36225872

So, if you haven't discussed it, I would raise the issue of a pump - you can find out more about them at http://www.inputdiabetes.org.uk/

Regarding MODY - this is diagnosed with some very specific genetic tests. Do you have any family history of diabetes? How did your diagnosis come about originally?
 
Welcome to the forum Georgia. :D
 
Im an anomaly too!

I have no insulin from 11pm til 6am cos if i do i spend the night hypo. A pump makes this easy to achieve.
 
Hey Georgina!

I'm going through exactly the same thing, and starting to wonder if theres a chance of MODY - I was diagnosed much later than you, at 29. It's been almost 5 years and my insulin requirement is much lower than 0.5units per kg of body weight (at the moment like 0.25-0.3u). I do a lot of cycling, on some days I can barely take any insulin without having hypos, my insulin needs fluctuate dramatically. Have you asked your consultant/doctor for an antibody test? I was informed there are two antibody tests you can have that test for four of the antibodies that cause type 1. The first is available on the NHS, the second test is fairly expensive but there are some trials you can apply for in London which provide the test, it may be worth asking your consultant about options. If the antibody tests all come back negative the next step is to request a gene test to see if you carry the MODY gene. Do you know if anyone in your family had similar diabetes symptoms? My uncle developed Type 1 Diabetes late and had extremely low doses of Insulin.

I've just had my first Antibody test which came back negative, and am going to get on a trial of the second test in the next few months. I haven't looked into getting a gene test, but definitely worth asking your consultant about this.

My consultant was keen not to get my hopes up too much, MODY is rare (I was told 1-2% of diagnosed Type 1's have it). For me, even if I do get a result of MODY this may not stop insulin needs as there are several types of MODY, some which can't be treated differently, but it would be good to know as they may be able to adjust the treatment to provide a better quality of life.

Final thing - due to it's rarity, not a lot of GPs actually know about MODY, so you may have to point them to a few online resources if they're your primary healthcare professional. Hopefully you have consultant who is aware?
 
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Mody is only confirmed through the genetic test.

The high level of exercise will reduce your insulin requirements in two ways.
1 increased demand for ATP within the muscle (this is what glucose is broken down into to provide energy).
2 With that level of exercise, an increase in sweat (elimination) which will include glucose within the secretion.
Combine these with a low insulin resistance will create a situation similar to yours. I have stopped all insulin as I am both Mody and on a high activity levels. I do consume a lot less carbohydrate than yourself.
 
Owen said:
Mody is only confirmed through the genetic test.

The high level of exercise will reduce your insulin requirements in two ways.
1 increased demand for ATP within the muscle (this is what glucose is broken down into to provide energy).
2 With that level of exercise, an increase in sweat (elimination) which will include glucose within the secretion.
Combine these with a low insulin resistance will create a situation similar to yours. I have stopped all insulin as I am both Mody and on a high activity levels. I do consume a lot less carbohydrate than yourself.
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Hi Owen, I've been informed you can't have a Gene test on the NHS until the Antibody tests have been done due to the high cost of Gene testing - i.e they can't afford for everyone to have one, so Antibody testing is a more affordable way to screen for MODY before sending you for Gene testing.
 
Perhaps I should mention that I do have private healthcare, so it was never mentioned as an issue.
 
Owen said:
Perhaps I should mention that I do have private healthcare, so it was never mentioned as an issue.
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Ahhh - Nice one Owen, that makes a lot of sense! Yeah I think the NHS consultants don't want to run up a huge bill for Gene testing without a strong case.
 
I believe the cost of the test is about £4000, so not a common one. The only benefit other than explaining that you are slightly different is that there is a high risk of passing the gene on.
 
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