- Messages
- 14
- Type of diabetes
- MODY
- Treatment type
- Insulin
INSULIN FREE
In the beginning
Imagine being 18 years old, just married, in my second year of nurse training when I was diagnosed with type 1 diabetes. My brother had been diagnosed a few years earlier so there was no question in any one’s mind regarding my diagnosis - thus began my love-hate relationship with having 4 insulin injections a day.
Now, it is 40 years on, or in type 1 terms, 58,400 injections later and my world was about to change.
For the past ten years I routinely trotted along to my diabetic specialist to hear the results of my HbA1c and how all the organs of my body were doing and ask the obligatory question “what new treatments are being developed?” – “nothing much, just a lot of fuss about glycaemic index”. The death of this specialist meant that I had to find someone else – along came Dr J.
Interview that changed my life
My first appointment was like a job interview; sit on the other side of his huge desk and answer a myriad of questions – “tell me all about yourself, your family, what diseases did they have, what do you know about your disease” on and on. I was pretty practiced after all these years so it just rolled out, not too hard.
I started to move around in my chair to leave when Dr J said, “I would really like to explore more about your family, can we do that?” – An hour later. I was able to identify that my grandfather, father, mother, three brothers and myself were all diagnosed with either type 1 or type 2 diabetes. “How interesting” he said, “have you ever heard of Maturity-Onset Diabetes of the Young – MODY?”
MODY is a gene mutation condition that causes failure of insulin secretion as opposed to the autoimmune destruction of beta cells associated with traditional type 1 diabetes. MODY is caused by a change in a single gene. So far 6 genes have been identified:
· HNF1A
· Glucokinase
· HNF1B (including Renal Cysts and Diabetes (RCAD))
· HNF4A
· IPF1
· NEUROD1
MODY can resemble ordinary type 1 diabetes, and one of the incentives for diagnosing it is that insulin may be discontinued or deferred in favour of oral sulfonylureas. Some people treated with insulin for years due to a presumption of type 1 diabetes have been able to switch to pills and discontinue injections.
I was intrigued and happy to think that maybe this routine thing – type 1 – which I had normalised into my day-to-day routine might not be as it seems– was I a MODY?
First I had some blood tests to see if it was worthwhile having the more specialised DNA tests (something that you soon learn costs a lot as it is not covered by Medicare). Yes, was the answer, so like a game of Monopoly I took more steps forward to have the Genetic testing done – a month later Dr J rang me in the evening to say “You have MODY 3 (also known as HNF1A-MODY) rather than type 1 “Have a look at the internet, particularly the research out of England and I will see you in my Office to discuss what this means for you.”
I discovered MODY affects 1-2% of people with diabetes, although it often goes unrecognised. The 3 main features of MODY are:
· Diabetes often develops before the age of 25
· Diabetes runs in families from one generation to the next
· Diabetes may be treated by diet or tablets and does not always need insulin treatment
MODY runs in families because of a change in a single gene which is passed on by affected parents to their children. We call this Autosomal Dominant Inheritance. All children of an affected parent with MODY have a 50% chance of inheriting the affected gene and developing MODY themselves.
Treatment that changed my life
When I arrived to see Dr J, I was more concerned about what this diagnosis meant to my 22 year old daughter, rather than anything related to myself due to the high risk of passing on the gene mutation. Reframed by Dr J “there is a 50% chance that she will not get MODY’.
MODY is not usually treated with insulin injections as there is still insulin being produced, unlike type 1 diabetics which is an autoimmune disease. I thought this was as remote as I had been having injections for such a long time, I would have no hope in hell of stopping the injections!
Again, Dr J took me by surprise, and asked if I would like to try stopping insulin and try Glycazide tablets. He emphasized it was probably pretty short odds that I would be able to stay off the insulin but “he was willing to try if I was” (I thought, what did he mean if I want to – you have to be joking? Do you understand 40 years of regimented life dictated by injection and food, injection, food?) I jumped at the opportunity, thinking that even if it was only for one or two days until my blood sugars escalated into outer orbit it was worth it – I am now 28 insulin free days later or the equivalent of 112 insulin injections, and I am showing good blood sugar levels to indicate that this will continue.
New learning
The first few days I felt like I was mesmerized by my glucometer – measuring 4 times a day and wanting to check in-between to see if my glucose levels were rising. I was a bit lost as I had rituals for taking my insulin in my work and home life these were gone – I no longer have to make excuses to dash off to privately inject. I do not have to be conscious of taking my insulin kit with me everywhere, as those 4 daily injections always need to be considered. My refrigerator has space – when you get two different types of insulin pens and a new prescription you know how much space they take up in the fridge, suddenly I have a whole shelf available.
It is scary at times as I feel like I am learning about diabetes all over again, previously I could balance carbs, exercise and insulin levels tightly but, on this new regime this is a totally different approach – takes time. Hypos where I would feel a familiar set of symptoms that usually started with heart racing and sweating are elusive and yet the glucometer tells me I am low, something has changed for my internal alert system.
Hypoglycaemia is my fear now as I learn to titrate the dose of tablets as MODY 3’s are more sensitive to sulphonylurea medicines and only need the slightest increases to have dramatic blood sugar lowering effects. I no longer fear ketoacidosis that I had been so fearful of as a type 1 diabetic as I am producing insulin this is not possible.
Lessons
1. What I had known as type 1 and type 2 no longer captures all diabetics.
2. Having a treatment review outside of your normal long term treatment team can open doors
3. Insulin injections may not always be a life sentence
In the beginning
Imagine being 18 years old, just married, in my second year of nurse training when I was diagnosed with type 1 diabetes. My brother had been diagnosed a few years earlier so there was no question in any one’s mind regarding my diagnosis - thus began my love-hate relationship with having 4 insulin injections a day.
Now, it is 40 years on, or in type 1 terms, 58,400 injections later and my world was about to change.
For the past ten years I routinely trotted along to my diabetic specialist to hear the results of my HbA1c and how all the organs of my body were doing and ask the obligatory question “what new treatments are being developed?” – “nothing much, just a lot of fuss about glycaemic index”. The death of this specialist meant that I had to find someone else – along came Dr J.
Interview that changed my life
My first appointment was like a job interview; sit on the other side of his huge desk and answer a myriad of questions – “tell me all about yourself, your family, what diseases did they have, what do you know about your disease” on and on. I was pretty practiced after all these years so it just rolled out, not too hard.
I started to move around in my chair to leave when Dr J said, “I would really like to explore more about your family, can we do that?” – An hour later. I was able to identify that my grandfather, father, mother, three brothers and myself were all diagnosed with either type 1 or type 2 diabetes. “How interesting” he said, “have you ever heard of Maturity-Onset Diabetes of the Young – MODY?”
MODY is a gene mutation condition that causes failure of insulin secretion as opposed to the autoimmune destruction of beta cells associated with traditional type 1 diabetes. MODY is caused by a change in a single gene. So far 6 genes have been identified:
· HNF1A
· Glucokinase
· HNF1B (including Renal Cysts and Diabetes (RCAD))
· HNF4A
· IPF1
· NEUROD1
MODY can resemble ordinary type 1 diabetes, and one of the incentives for diagnosing it is that insulin may be discontinued or deferred in favour of oral sulfonylureas. Some people treated with insulin for years due to a presumption of type 1 diabetes have been able to switch to pills and discontinue injections.
I was intrigued and happy to think that maybe this routine thing – type 1 – which I had normalised into my day-to-day routine might not be as it seems– was I a MODY?
First I had some blood tests to see if it was worthwhile having the more specialised DNA tests (something that you soon learn costs a lot as it is not covered by Medicare). Yes, was the answer, so like a game of Monopoly I took more steps forward to have the Genetic testing done – a month later Dr J rang me in the evening to say “You have MODY 3 (also known as HNF1A-MODY) rather than type 1 “Have a look at the internet, particularly the research out of England and I will see you in my Office to discuss what this means for you.”
I discovered MODY affects 1-2% of people with diabetes, although it often goes unrecognised. The 3 main features of MODY are:
· Diabetes often develops before the age of 25
· Diabetes runs in families from one generation to the next
· Diabetes may be treated by diet or tablets and does not always need insulin treatment
MODY runs in families because of a change in a single gene which is passed on by affected parents to their children. We call this Autosomal Dominant Inheritance. All children of an affected parent with MODY have a 50% chance of inheriting the affected gene and developing MODY themselves.
Treatment that changed my life
When I arrived to see Dr J, I was more concerned about what this diagnosis meant to my 22 year old daughter, rather than anything related to myself due to the high risk of passing on the gene mutation. Reframed by Dr J “there is a 50% chance that she will not get MODY’.
MODY is not usually treated with insulin injections as there is still insulin being produced, unlike type 1 diabetics which is an autoimmune disease. I thought this was as remote as I had been having injections for such a long time, I would have no hope in hell of stopping the injections!
Again, Dr J took me by surprise, and asked if I would like to try stopping insulin and try Glycazide tablets. He emphasized it was probably pretty short odds that I would be able to stay off the insulin but “he was willing to try if I was” (I thought, what did he mean if I want to – you have to be joking? Do you understand 40 years of regimented life dictated by injection and food, injection, food?) I jumped at the opportunity, thinking that even if it was only for one or two days until my blood sugars escalated into outer orbit it was worth it – I am now 28 insulin free days later or the equivalent of 112 insulin injections, and I am showing good blood sugar levels to indicate that this will continue.
New learning
The first few days I felt like I was mesmerized by my glucometer – measuring 4 times a day and wanting to check in-between to see if my glucose levels were rising. I was a bit lost as I had rituals for taking my insulin in my work and home life these were gone – I no longer have to make excuses to dash off to privately inject. I do not have to be conscious of taking my insulin kit with me everywhere, as those 4 daily injections always need to be considered. My refrigerator has space – when you get two different types of insulin pens and a new prescription you know how much space they take up in the fridge, suddenly I have a whole shelf available.
It is scary at times as I feel like I am learning about diabetes all over again, previously I could balance carbs, exercise and insulin levels tightly but, on this new regime this is a totally different approach – takes time. Hypos where I would feel a familiar set of symptoms that usually started with heart racing and sweating are elusive and yet the glucometer tells me I am low, something has changed for my internal alert system.
Hypoglycaemia is my fear now as I learn to titrate the dose of tablets as MODY 3’s are more sensitive to sulphonylurea medicines and only need the slightest increases to have dramatic blood sugar lowering effects. I no longer fear ketoacidosis that I had been so fearful of as a type 1 diabetic as I am producing insulin this is not possible.
Lessons
1. What I had known as type 1 and type 2 no longer captures all diabetics.
2. Having a treatment review outside of your normal long term treatment team can open doors
3. Insulin injections may not always be a life sentence
