weird newbie

[lilituc]

Hi all, this is going to be a bit long because I'm not a typical case. I'm 28, thin, and have been eating 100-120g of carbs a day for many years. I exercise at least an hour every day but usually more. I had a history of feeling bad after eating desserts, so I cut them out, as well as regular soda and candy, in 2001. Our friend (who lives with us) is a Type 1 and he tested my blood sugar a few times when this happened. It was always at 100.

Fast forward to March 2005. I had a dessert after dinner once and felt absolutely awful. The friend gave me an old meter and I quickly discovered that my postprandial numbers were 170-180. When I showed this to my GP, he said I had to see an endo. The endo diagnosed me with Impaired Glucose Tolerance and told me to follow his diet and exercise plan. He did an antibody test and it was negative. I went home and followed my own meal plan because it was more restrictive. After six months I realised I was eating 30g carbs/day and my postprandial numbers were still going up. Also that it makes no sense to treat me with a less restrictive plan than what I'm doing - doh! My GP put me on Starlix and that worked "ok" for three months until I saw a new endo. He put me on Metformin and Actos However, I was already losing control and as time went on it just got worse. My fasting was still only 94, but after eating I'd go up to 270 and wouldn't come down. I went on NovoLog in June of this year. I was luckily not afraid to go on insulin, and I am very motivated to have good numbers since I'm only 28. Since reading some of these posts, I saw that MODY describes me really well. Unfortunately, most of my family history is unknown so it is just a suspicion at this point.

Nice to meet you all!

[seacomp]

Welcome to the Forum. You appear to have a quite good understanding of your situation and are handling it well. It's not good to have a reason to be in this Forum, but it is good that you've stepped up to the situation.
Please feel free to ask questions about/comment on anything relating to Diabetes or the Forum.

P.S. You look to be quite the linguist.

[lilituc]

Welcome to the Forum. You appear to have a quite good understanding of your situation and are handling it well. It's not good to have a reason to be in this Forum, but it is good that you've stepped up to the situation.
Please feel free to ask questions about/comment on anything relating to Diabetes or the Forum.

P.S. You look to be quite the linguist.

Thank you! After I started to feel unsatisfied with my experience with endo #1, I went out and did a lot of research, which really helped. I am not so much a linguist as a dabbler, but I certainly enjoy studying languages.

I should have mentioned before that I am so glad to have found this forum! It wasn't until I read about MODY here that I even found something that sounded like me. It has been a long, frustrating experience for me since last year. Endo #1 told me that I was worrying about nothing and that I should only be testing once a week. Pretty much everyone told me there was no risk of progression for 7 or 8 years. Even friends have made fun of me for being so "anal" about aggressively treating this. It may be easier for me to do so because I have other health problems that need to be managed, so I am used to doing it. Anyway, no one had any answers for me about why I didn't look like other Type 2s. I had felt very alone until I came here.

So thanks to everyone!

[4519]

Welcome to the forum

As far as people(friends you said) saying that you don't have tol worry about complications because you have years to worry about that are wrong and not the ones that will wake up during the night with pains in their legs so bad that they cannot sleep. They won't lose their eyesight, you know all the things they won't suffer from because you decided to ease up on yourself and wait until the damage hits you before doing something about it. Be aggressive, diabetes is a very personal disease that affects you and not your friends.

The treatment for impared glucose tolerance and type 2 at this stage is the same - change of lifestyle - diet and exercise mainly. You are heading in the right direction to have good control over your health.

Hang in there and do what you see necessary for your own health - you have to live with it.

[lilituc]

I forgot to add that I was officially diagnosed with Type 2 in March of 2006.

[Funnygrl]

It could still be a honeymoon stage of type 1. I noticed in my own cause my post prandial numbers were way more elevated than my fasting numbers, and my fasting numbers are only recently beginning to creep up- usually the best indicator of leaving the honeymoon stage.

How much insulin you require could be an indicator of if you have insulin resistance, though not as well as with other people due to the fact that you take metformin.

It seems that the more tests there are to determine what type you have the more confused people become and the less people fit into one set category. It seems like you are effectively dealing with your diabetes though.

I was also an unusual case, on a pump before I was even diagnosed practically.

[lilituc]

It could still be a honeymoon stage of type 1. I noticed in my own cause my post prandial numbers were way more elevated than my fasting numbers, and my fasting numbers are only recently beginning to creep up- usually the best indicator of leaving the honeymoon stage.

How much insulin you require could be an indicator of if you have insulin resistance, though not as well as with other people due to the fact that you take metformin.

It seems that the more tests there are to determine what type you have the more confused people become and the less people fit into one set category.

Yes, I did think it was going to be Type 1 for a long time, but they did another antibody test last month and it was still negative. My C-Peptide was 2.2, which I guess is in normal range. Now that I've learned about MODY I guess I'm more willing to believe it is Type 2 since that sounds like my experience. I do have some medication-induced insulin resistance, but it's not that much. I'm not sure what my own normal resistance is. I'm on a 1/15 ratio with the NovoLog, but I don't take a long-acting insulin so I don't know how to compare it to other people.

To be honest, I'm not sure the metformin is doing anything (other than giving me a lot of bloating, heh) but I'm taking it anyway since the (new) endo wants me to and he knows what he's doing.

[shanda]

Welcome to the Forum lilituc :)

I am very impressed with the knowledge you have gained about your situation in such a short period of time. I have a child your age and would hope she would be as aggressive to educate herself if she were to develop diabetes too.

Well DONE :)

Hope to see you around the Forum


shanda

[Funnygrl]

Yes, I did think it was going to be Type 1 for a long time, but they did another antibody test last month and it was still negative. My C-Peptide was 2.2, which I guess is in normal range. Now that I've learned about MODY I guess I'm more willing to believe it is Type 2 since that sounds like my experience. I do have some medication-induced insulin resistance, but it's not that much. I'm not sure what my own normal resistance is. I'm on a 1/15 ratio with the NovoLog, but I don't take a long-acting insulin so I don't know how to compare it to other people.

To be honest, I'm not sure the metformin is doing anything (other than giving me a lot of bloating, heh) but I'm taking it anyway since the (new) endo wants me to and he knows what he's doing.
2.2 is on the low side of norm, and antibodies are only positive in 80% of people with type 1.

[Lex4153]

Congrats on taking the steps to educate and take better care of yourself! I also think I am MODY, but my case is very different from yours. I was diagnosed at 13. 28 isn't unreasonable to have T2 and not all T2's have to be overweight. Are there other reasons you think you are MODY? Have you talked about it with your doctor? (mine actually didn't even know what it was!)

[lilituc]

Thanks, everyone! You guys are so nice.

I did email my endo about it, but he is very busy and all he said was that MODY usually has a strong family history so he's not concerned about it. I think he saw in my file "no family history" and didn't realise it meant that I don't know my family history. I am moving soon so I won't be seeing him again (aw), so I did not try to explain it again. Also, he's been treating my symptoms regardless. It might be better when I get my new endo to be able to reference MODY to explain about how I don't have a typical presentation. Since I can't afford the genetic testing, though, it would be difficult to absolutely prove it.

I thought it might be MODY because I am thin and young, because taking metformin and Actos did not improve my numbers, because my fasting bG is normal (even on the low side), but I have "excursions" of 160-180 mg/dl (rise, not total) after eating 50 g of carbs, and because I have adequate control on a low dose of insulin while nothing else has worked.

[Mario]

Could someone explain me what is MODY ??? Another strange word for a frenchie :frown:

Oh and welcome here lilituc ! You'll found many informations and friends here, I'm sure.

[sofaraway]

http://www.projects.ex.ac.uk/diabetesgenes/

http://www.childrenwithdiabetes.com/clinic/mody.htm

these explain MODy- hope that helps Mario

[Mario]

Thanks sofaraway, this was very helpful, I understand now what is MODY. :)

[Lex4153]

For all the reasons you listed, are the same reason I believe I am too. I have a very strong history of diabetes in my family. I was thin when diagnosed. And I was only 13! Metformin barely worked for me, even on 1500 mg a day. But the lowest dose of Amaryl (1 mg) and Byetta (5 mcg) and my numbers are awesome.

MODY is really interesting. I want to get the genetic testing done and I'm exploring if there are any researchers looking for volunteers. Maybe you could look into that?

[lilituc]

For all the reasons you listed, are the same reason I believe I am too. I have a very strong history of diabetes in my family. I was thin when diagnosed. And I was only 13! Metformin barely worked for me, even on 1500 mg a day. But the lowest dose of Amaryl (1 mg) and Byetta (5 mcg) and my numbers are awesome.

MODY is really interesting. I want to get the genetic testing done and I'm exploring if there are any researchers looking for volunteers. Maybe you could look into that?

Sorry I never replied! I thought I did. Unfortunately, I don't make a good research subject because of all the different health conditions I have besides diabetes. I did find a lab that will do the testing and posted about it on here, so I am going to try to talk a new endo into ordering the test when I find one.

[Simon]

Can you give us an idea of how much insulin you need? A T1 will typically need 1 unit per 15 - 25 g carb. If you need much more than this there is a better chance you are type 2. Accademic in a way but it's always nice to know.

[lilituc]

Can you give us an idea of how much insulin you need? A T1 will typically need 1 unit per 15 - 25 g carb. If you need much more than this there is a better chance you are type 2. Accademic in a way but it's always nice to know.

My insulin ratio is 1/14, but it can't be compared straight to other people's ratios because I don't take a long-acting insulin. My housemate is a Type 1 and his ratio is 1/8 (and he's also on Lantus)! My blood sugar to carb ratio is 3 points/1g. I take an average of 14 units of insulin a day but it depends on how many carbs I eat.

I don't really think I'm a Type 1. Basically, the problem is that my pancreas can't handle food. You'd think an ultra low carb diet would work, but (1) it makes me very ill and (2) it doesn't actually work. The minimum amount of carbs needed to live is still enough to put me outside my blood sugar goals. When I wake up, my blood sugar is almost always between 85 and 92. If I don't eat over the course of a day, my blood sugar actually goes down (to 70 or 75) and has since long before I was diabetic. So basal insulin or a sulfonylurea would be a bad, bad idea.

I went off the metformin last month and nothing happened (other than the side effects going away), but I don't think that means I'm a Type 1 so much as that metformin isn't a good drug for me. Its primary action is to help diabetes by suppressing excessive hepatic glucose production, but I don't need mine suppressed since it's low normal. It just seems that my pancreas doesn't make enough insulin in response to food or in anticipation of food, which fits the MODY profile more.

[lilituc]

I don't know if anyone is still reading this, but after some recent book purchases, I've discovered that I should be called insulin deficient instead of insulin resistant. I've updated my information to reflect this, so hopefully it will be less confusing to people (including me). Hopefully it makes more sense now.

They didn't test me for antibodies other than GAD65, but I read that GAD65 is what almost all of people with LADA have. So I could be too old for Type 1 with a different kind of antibody, but I guess I'll just have to wait and see for that.

[Keezheekoni]

Hi and welcome to the forum! Glad to have you here. :)