MODY, after 20 years of Type 1

MikeEMike · Dec 21, 2018

Hi guys, long time lurker, rare poster.

Been feeling crook lately. Close to a year now. Constipation, cramps, blood in bowels, lethargy and depression. I haven't really had much faith in doctors so I have been putting off going to one (every doctor tells me something different).

Diagnosed type 1 in 1998 and put on long acting and short acting. I was tested for C-pep at the time and I remember the test confirmed I was Type 1.

From the ages of 15-18 I took no insulin at all and ate sugar like you would expect a teenager to.

At 18 I saw a doctor again and he put me on Mixtard 70/30. I have been on this regimen since then. I'm now 33.

So I found a new GP recently and told him what was going on. When he heard I was on Mixtard he raised a red flag. This combined with 3 years without insulin led him to believe I have MODY. After a full battery of tests, blood, feces and urine, everything came back fine. A1C was 7.1, and 5.7 before that. Still awaiting GAD results. But my c-pep was 0.2 (at least this is what I briefly saw on his computer screen). He explained that a Type 1 would be zero, as this is evidence that my body is producing some insulin?

Anyway, he changed me to a super long acting insulin, Toujeo, and said once I find the right dosage he will introduce a pill (can't remember the name) and eventually phase out the insulin. He said that by removing the short acting insulin from my injections it would convince my body to start releasing my own insulin again, as the Mixtard has been suppressing it.

Is this too good to be true? Have I been injecting for 20 years unnecessarily?

I only got brief explanations and it has me left with questions. Particularly:

Are the health risks associated with MODY less than with Type 1?
Can my diet be relaxed a bit to include the occasional dessert?
Have I been explained MODY properly and, to any health professionals, do you think his suspicions are accurate?

Thanks in advance,
Mike

WhiteCat27 · Dec 22, 2018

MikeEMike said:
Hi guys, long time lurker, rare poster.

Been feeling crook lately. Close to a year now. Constipation, cramps, blood in bowels, lethargy and depression. I haven't really had much faith in doctors so I have been putting off going to one (every doctor tells me something different).

Diagnosed type 1 in 1998 and put on long acting and short acting. I was tested for C-pep at the time and I remember the test confirmed I was Type 1.

From the ages of 15-18 I took no insulin at all and ate sugar like you would expect a teenager to.

At 18 I saw a doctor again and he put me on Mixtard 70/30. I have been on this regimen since then. I'm now 33.

So I found a new GP recently and told him what was going on. When he heard I was on Mixtard he raised a red flag. This combined with 3 years without insulin led him to believe I have MODY. After a full battery of tests, blood, feces and urine, everything came back fine. A1C was 7.1, and 5.7 before that. Still awaiting GAD results. But my c-pep was 0.2 (at least this is what I briefly saw on his computer screen). He explained that a Type 1 would be zero, as this is evidence that my body is producing some insulin?

Anyway, he changed me to a super long acting insulin, Toujeo, and said once I find the right dosage he will introduce a pill (can't remember the name) and eventually phase out the insulin. He said that by removing the short acting insulin from my injections it would convince my body to start releasing my own insulin again, as the Mixtard has been suppressing it.

Is this too good to be true? Have I been injecting for 20 years unnecessarily?

I only got brief explanations and it has me left with questions. Particularly:

Are the health risks associated with MODY less than with Type 1?
Can my diet be relaxed a bit to include the occasional dessert?
Have I been explained MODY properly and, to any health professionals, do you think his suspicions are accurate?

Thanks in advance,
Mike

Hello I'm also new to the forum!! I'm currently dealing with a similar issue (you may have seen my post about it) but I can answer some of your questions about MODY. MODY is a rare genetic form of diabetes, where a gene is mutitated in your DNA (there are multiple forms of the MODY gene, some more common than others) is what causes your diabetes. This means regardless of your weight, diet, lifestyle etc, you will get diabetes because of the mutation.

The key signs of MODY are being diagnosed with diabetes under the age of 25, having strong family history of diabetes (in three of more generations) and not necessarily needing insulin. This is because most of the genes that cause MODY diabetes don't require insulin but a tablet form medication.

The way it's figured out is by sending a blood sample to a specialist DNA testing facility in Exeter, which is usually done by your consultant if you're in the UK. There, they test your sample for all the different genes. Depending on the gene you have, your treatment may change where you don't need insulin.

Honestly the best thing you can do is push your consultant about it, if you fit the symptoms I said. But honestly I'm not sure if you fit MODY, I'm 22 myself and was diagnosed with diabetes at 20, at the moment don't need insulin, but it's a very confusing thing. If your GP suspects MODY, they should be referring you to your consultant or even a diabetic nurse, since they specialise in this more than a regular GP.

MikeEMike · Dec 22, 2018

Thanks.

I know I'm not type 1. A few reasons why:

Never had DKA
Never had a hypo fit
3 years no insulin at all and eating sweets
Have been on an insulin not entirely suitable for a Type 1 for 15 years

My original diagnosis as a type 1 was at age 13, so I presented young.

I don't have an Endo but am getting a referral to an Endo that specializes in MODY. And to be honest, I don't give any health professional full credibility as each one tells me something different. I'd like to stick with as few as possible.

It's quite interesting as every GP, Endo and diabetes educator I've mentioned about the 3 years without insuilin says 'Wow! that's incredible! You should be dead! But you're still a type 1'.

I'd love to get the gene testing done but sadly it is unaffordable for my situation.

WhiteCat27 · Dec 24, 2018

MikeEMike said:
Thanks.

I know I'm not type 1. A few reasons why:

Never had DKA
Never had a hypo fit
3 years no insulin at all and eating sweets
Have been on an insulin not entirely suitable for a Type 1 for 15 years

My original diagnosis as a type 1 was at age 13, so I presented young.

I don't have an Endo but am getting a referral to an Endo that specializes in MODY. And to be honest, I don't give any health professional full credibility as each one tells me something different. I'd like to stick with as few as possible.

It's quite interesting as every GP, Endo and diabetes educator I've mentioned about the 3 years without insuilin says 'Wow! that's incredible! You should be dead! But you're still a type 1'.

I'd love to get the gene testing done but sadly it is unaffordable for my situation.

You most certainly don't sound like a typical type one then! If you're in the UK and the consultant, or Endo you're seeing has a strong feeling you have MODY, you should get tested for free. It's not something patients can really do themselves I think. I hope the Endo helps you out with this as I'm sure it's frustrating for you

Karolina16222 · Dec 31, 2018

MikeEMike said:
Hi guys, long time lurker, rare poster.

Been feeling crook lately. Close to a year now. Constipation, cramps, blood in bowels, lethargy and depression. I haven't really had much faith in doctors so I have been putting off going to one (every doctor tells me something different).

Diagnosed type 1 in 1998 and put on long acting and short acting. I was tested for C-pep at the time and I remember the test confirmed I was Type 1.

From the ages of 15-18 I took no insulin at all and ate sugar like you would expect a teenager to.

At 18 I saw a doctor again and he put me on Mixtard 70/30. I have been on this regimen since then. I'm now 33.

So I found a new GP recently and told him what was going on. When he heard I was on Mixtard he raised a red flag. This combined with 3 years without insulin led him to believe I have MODY. After a full battery of tests, blood, feces and urine, everything came back fine. A1C was 7.1, and 5.7 before that. Still awaiting GAD results. But my c-pep was 0.2 (at least this is what I briefly saw on his computer screen). He explained that a Type 1 would be zero, as this is evidence that my body is producing some insulin?

Anyway, he changed me to a super long acting insulin, Toujeo, and said once I find the right dosage he will introduce a pill (can't remember the name) and eventually phase out the insulin. He said that by removing the short acting insulin from my injections it would convince my body to start releasing my own insulin again, as the Mixtard has been suppressing it.

Is this too good to be true? Have I been injecting for 20 years unnecessarily?

I only got brief explanations and it has me left with questions. Particularly:

Are the health risks associated with MODY less than with Type 1?
Can my diet be relaxed a bit to include the occasional dessert?
Have I been explained MODY properly and, to any health professionals, do you think his suspicions are accurate?

Thanks in advance,
Mike

Hello

MikeEMike said:
Hi guys, long time lurker, rare poster.

Been feeling crook lately. Close to a year now. Constipation, cramps, blood in bowels, lethargy and depression. I haven't really had much faith in doctors so I have been putting off going to one (every doctor tells me something different).

Diagnosed type 1 in 1998 and put on long acting and short acting. I was tested for C-pep at the time and I remember the test confirmed I was Type 1.

From the ages of 15-18 I took no insulin at all and ate sugar like you would expect a teenager to.

At 18 I saw a doctor again and he put me on Mixtard 70/30. I have been on this regimen since then. I'm now 33.

So I found a new GP recently and told him what was going on. When he heard I was on Mixtard he raised a red flag. This combined with 3 years without insulin led him to believe I have MODY. After a full battery of tests, blood, feces and urine, everything came back fine. A1C was 7.1, and 5.7 before that. Still awaiting GAD results. But my c-pep was 0.2 (at least this is what I briefly saw on his computer screen). He explained that a Type 1 would be zero, as this is evidence that my body is producing some insulin?

Anyway, he changed me to a super long acting insulin, Toujeo, and said once I find the right dosage he will introduce a pill (can't remember the name) and eventually phase out the insulin. He said that by removing the short acting insulin from my injections it would convince my body to start releasing my own insulin again, as the Mixtard has been suppressing it.

Is this too good to be true? Have I been injecting for 20 years unnecessarily?

I only got brief explanations and it has me left with questions. Particularly:

Are the health risks associated with MODY less than with Type 1?
Can my diet be relaxed a bit to include the occasional dessert?
Have I been explained MODY properly and, to any health professionals, do you think his suspicions are accurate?

Thanks in advance,
Mike

Hello
I suggest you submit your question to Dr Bernstein, type 1 endo, in USA. Once a month for an hour he answers questions. Submit your question by searching Dr Bernstein free teleseminar registration.

MODY, after 20 years of Type 1

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MODY, after 20 years of Type 1

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