New Diganosis, lots of questions!

[lilmoe76]

Hi everyone,
I was just told on Friday last week I was Diabetic. I had gone to the Doctor because I am always so tired.
Some of my family members were diagnosed T2 and eventually became insulin dependent. I have been reading lots of posts and information and learning a bit about this 1.5 type and wondering if that is me!
I was told by my Doctor via an email about my numbers (hence why I have so many questions) and to schedule an appt with a diabetic educator (which I go to on Weds) I am not looking for any medical or specific advice, just thoughts from those of you that have been there, done that.
Questions:
How do you find out what type you are?
Should I expect this Diabetes educator to be able to prescribe meds and form a plan with me? Don't I need an Endocrinologist?
Don't I need more testing (fasting BS at least? although I would probably pass out!)

Here is my info if it helps-

Non-fasting BS 243
A1c 6.6
All my labs came back normal, good cholesterol, low blood pressure, not overweight (5'4, 120 lbs)

[mortis505]

Hello and welcome to DF!

Yes I would recommend an Endo. Also ask for some additional tests.

C-peptide - this will show how much insulin you are producing.

GAD Antibody - This will show the presence of the GAD65 AutoAntibody that is prevalent(but not always there) in T1.5/LADA.

Unfortunately almost 20% of adults diagnosed with T@ are actually T1/1.5. This is due to a "label" of juvenile being associate with T1.

See these links for some additional info.

What Type Of Diabetes Do I Have? (http://www.diabetesnet.com/diabetes_types/whatype.php)

Latent autoimmune diabetes - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Latent_autoimmune_diabetes)

[Josselyn]

Hi lilmoe. Welcome aboard.

Unsure about diabetes educators prescribing medication - they will help you map out a plan. My experience is that the doctor does the writing of prescriptions. Your doctor should also have told you if you are Type 2...or not.
You were notified of your diagnosis in an email??? How awful. :(

Were you diagnosed based on your A1c test or the results from an oral glucose tolerance test (OGTT)? The type of tests you've had would determine whether you need more tests for a full diagnosis. I was diagnosed with an A1c of 6.6...the same as yours. I also failed the OGTT with a 2hr reading of 288. My fasting blood glucose numbers at that time were still more or less "normal." I'm told it's the last thing to go...and so, not the earliest or best indicator of BG issues.

Just curious, but what in those postings you'd read made you think you're possibly a Type 1.5 and not a Type 2?

As for an endocrinologist - not everyone has, or needs one. I don't have one as yet. Again, this is something you need to discuss with the PCP who diagnosed you.

It's great that your vitals are otherwise good; you may well have caught this pretty early.

I'm certain there are others, more well versed in this than I, who will offer their wisdom, too. You'll learn much from others here at DF. Let us know how this is working out for you...and what you learn as you go.

[Dan Gato]

Welcome Lil, :shakehand

The doctor or endocrinologistst will be the one to precribe meds.
Probably will start you with Metformin. The diabetes educator probably will tell you things about carbohydrates & may give u a glucose meter & tell you how often to test & to keep a log.
Your A1C doesn't look too high, probably you need low dosage of meds & carbs control for now, keep reading the posts here.
They recomend the BS to be under 140 to prevent complications.
I do it my eating low carbs, but each person is different.

[lilmoe76]

Thank you all for the advice!

I was diagnosed just of my A1c results.

The reason I am curious about the 1.5 is that think I have had bs issues for some time, not severe, just always there. I have always been one of those who gets weird when I don't eat, even when I was young. I have read it comes on slowly. But who knows? I have learned from these posts that I need to be able to advocate for myself to my doctors, I just want to be aware of what is out there. I don't want this thing to get out of control and begin to cause damage etc....that scares me as my family has gone through that.

I guess I will find out more tomorrow after my visit with the nurse. I do have an appt with an endo in a few weeks as well.

I just am physically exhausted and now on top of it I am scared and in a panic. It is really scary to have to wait to be able to talk to someone!

Thank you all for the support-what a nice place to be! Sometimes a person just needs to talk it out! :)

[jer.lawrence]

Hello hello!

I don't think feeling weird without eating is any more prevalent in T1 than it is in T2's. I also think that's pretty normal with or without diabetes, so that's not necessarily a need for concern. I would reccommend getting tested though, just to know for sure. I still haven't been tested yet to find out if I have LADA.. but I'm overweight and my family has a history of T2, so I'm much more pre-disposed to having it, I think.

It is frightening at the beginning like that, and I'm also shocked you got your diagnosis over email! I've found (I'm only about a month and a half into it) that it's really not as big of a deal as it seemed like at first. I know that's hard to hear at first and doesn't mean much, but it's the truth. :P

Hope everything goes well for you and I hope you stick around and enjoy your stay.

[SB_Krista]

I did not get a diagnosis of diabetes until my A1c hit 7.0. Prior to that, as I hovered between 6.3 - 6.8, I was told I was in a grey area and the Dr. took a watch & wait approach.

An A1c of 6.6 means your blood sugars are averaging 158 (sometimes higher, sometimes lower, presumably).

My first appt was with a diabetes educator, and we reviewed my diet, and she ordered more lab tests (GAD antibodies, C-peptide level). Two weeks later, I saw the Endo and he ordered medications (started with orals, now on both Lantus and one oral).

Good luck and welcome to the forum!

[tealas]

Welcome Lilmoe,

Your family also fits the pattern for potential MODY diabetes.
MODY3 is most common. You may want to read more about it here: Maturity Onset Diabetes of the Young (MODY) (http://projects.exeter.ac.uk/diabetesgenes/mody/)

Cheers,
Teala

[foxl]

Hi Lil, you do not mention your weight ... but I am an overweight (was obese) T1.5, we exist too!

One other word -- Endos are not the end-all, LOL. I got my PCP to do GAD and C-pep testing (see my signature) and then HE sent me to an Endo ... and SHE treats clinical symptoms only, so no further antibody or C-pep testing, and she declared me a T2 (I consider myself to be under protest here, despite thinking I may or may not have insulin resistance -- she defines T2 as non-insulin dependent!). The only good thing I can say is she is willing to let me go to insulin next. So I have access to her CDE and can learn to use it when I am ready.

[KimberlyType1]

When I was diagnsed as a teen my primary said I was a type 2, which confused me. BUt after seeing an endo I was corrected as a type 1 not producing any insulin at all at that time. Your endo will help to make a true determination. I have had a few primarys tell me some crazy things, even try to switch my meds. I always go with my two endos now. Yes I have two, I like having a second opinion. I am anal when it comes to control, after so many mess ups, I always see two doctors. What state are you in?

[tealas]

Hi everyone,
I was just told on Friday last week I was Diabetic. I had gone to the Doctor because I am always so tired.
Some of my family members were diagnosed T2 and eventually became insulin dependent. I have been reading lots of posts and information and learning a bit about this 1.5 type and wondering if that is me!
I was told by my Doctor via an email about my numbers (hence why I have so many questions) and to schedule an appt with a diabetic educator (which I go to on Weds) I am not looking for any medical or specific advice, just thoughts from those of you that have been there, done that.
Questions:
How do you find out what type you are?
Should I expect this Diabetes educator to be able to prescribe meds and form a plan with me? Don't I need an Endocrinologist?
Don't I need more testing (fasting BS at least? although I would probably pass out!)

Here is my info if it helps-

Non-fasting BS 243
A1c 6.6
All my labs came back normal, good cholesterol, low blood pressure, not overweight (5'4, 120 lbs)

Lilmoe, a couple of additional questions you might want to post answers to and/or think about. Many doctors or CDE's do not know much about MODY, so it is good to do some research and come prepared with good questions and information.

What age are you?
What age did your relatives get diagnosed with Type 2 diabetes?
Has there been someone in every generation of your family with diabetes? (i.e. mother, grandfather, great-grandmother?)
Have any of your family members with diabetes been tested for the Type 1 antibodies?
Can you borrow one of your relative's extra blood sugar meters and test your own fasting, pre and post meal blood sugars for a day or two?

[tealas]

Hello and welcome to DF!


What Type Of Diabetes Do I Have? (http://www.diabetesnet.com/diabetes_types/whatype.php)



It bugs me that MODY conditions are lumped in with LADA all as "Type 1.5". Good lord do they have to make it so confusing for all of us? MODY conditions are quite different in their biochemstry from autoimmune diabetes. And many of the treatments for MODY conditions really aren't appropriate long term for LADA (i.e. a MODY3 might do well on a sulfa for 10 years or longer, unlikely for a LADA).

I know this isn't the place for a rant, but I wish Type 1.5 would just be used for LADA, because LADA can progress to full Type 1. "Type MODY" or just "MODY" would be used as a fourth designation for all the different MODY phenotypes.

[foxl]

It bugs me that MODY conditions are lumped in with LADA all as "Type 1.5". Good lord do they have to make it so confusing for all of us? MODY conditions are quite different in their biochemstry from autoimmune diabetes. And many of the treatments for MODY conditions really aren't appropriate long term for LADA (i.e. a MODY3 might do well on a sulfa for 10 years or longer, unlikely for a LADA).

I know this isn't the place for a rant, but I wish Type 1.5 would just be used for LADA, because LADA can progress to full Type 1. "Type MODY" or just "MODY" would be used as a fourth designation for all the different MODY phenotypes.

Tealas, some people (even clinicians!) go so far as to distinguish LADA and T1.5 -- 1.5 beign combined type with resistance AND autoimmune. But the 1.5 forum is not very busy, and we read new posts, anyhow ... so what the heck?

[lilmoe76]

When I was diagnsed as a teen my primary said I was a type 2, which confused me. BUt after seeing an endo I was corrected as a type 1 not producing any insulin at all at that time. Your endo will help to make a true determination. I have had a few primarys tell me some crazy things, even try to switch my meds. I always go with my two endos now. Yes I have two, I like having a second opinion. I am anal when it comes to control, after so many mess ups, I always see two doctors. What state are you in?

I am in MN-and for the record-I totally agree! Especially after the way I was treated today-my Diabetes Educator didn't show up for my appt. I was able to sneak in and see my PCP (after I cried to the receptionist) and she said they would never prescribe meds for my levels, I was a type 2 due to my age (I am 32)and to change my diet! No extra tests or anything. Not the answers I was looking for-so I am very glad I have my appt with the Endo!
I have a feeling I am going to be pretty anal about my levels as well!
I am gathering from these forums that you all have had such a long road trying to advocate for yourselves and get the right diagnosis, looks like I am going to need to be armed with lots of knowledge!
Thank you all for the support, I now have a meter (I bought one on my own and had the nurse show me quick how to use it) so I will be obsessively checking my blood!

Have a good one!

[butterflykisses]

I am in MN-and for the record-I totally agree! Especially after the way I was treated today-my Diabetes Educator didn't show up for my appt. I was able to sneak in and see my PCP (after I cried to the receptionist) and she said they would never prescribe meds for my levels, I was a type 2 due to my age (I am 32)and to change my diet! No extra tests or anything. Not the answers I was looking for-so I am very glad I have my appt with the Endo!
I have a feeling I am going to be pretty anal about my levels as well!
I am gathering from these forums that you all have had such a long road trying to advocate for yourselves and get the right diagnosis, looks like I am going to need to be armed with lots of knowledge!
Thank you all for the support, I now have a meter (I bought one on my own and had the nurse show me quick how to use it) so I will be obsessively checking my blood!

Have a good one!

I HATE it when they decide a type by your age!!! That's exactly what happened to me. I was also 32. I am very happy to see that you have an appointment with an endocrinologist. You're more likely to get the diagnosis...but then I've heard of endo's that don't test for types either. I feel its important especially when dealing with LADA's because most of the typical type 2 meds are not very effective or may temporarily work. I got the "non-compliant" lecture on more than one occasion. :mad: I started with meds, misdiagnoses as a type 2. They did seem to work some in the beginning, but the thing is, I also made major changes to my diet, so who knows what was really working? LADA's are slower onset, but the outcome is the same as Type 1's...insulin dependence, at least for most. I wish I knew now what I knew then, it would have saved me a lot of frustration. That's why I'm glad you found this place! Now you'll be armed with some knowledge and won't be relying solely on what your doctors are telling you. :D Good luck with your endo appointment!

[tealas]

I am in MN-and for the record-I totally agree! Especially after the way I was treated today-my Diabetes Educator didn't show up for my appt. I was able to sneak in and see my PCP (after I cried to the receptionist) and she said they would never prescribe meds for my levels, I was a type 2 due to my age (I am 32)and to change my diet! No extra tests or anything. Not the answers I was looking for-so I am very glad I have my appt with the Endo!
I have a feeling I am going to be pretty anal about my levels as well!
I am gathering from these forums that you all have had such a long road trying to advocate for yourselves and get the right diagnosis, looks like I am going to need to be armed with lots of knowledge!
Thank you all for the support, I now have a meter (I bought one on my own and had the nurse show me quick how to use it) so I will be obsessively checking my blood!

Have a good one!

That is shabby!!! :mad:
A 6.6 HbA1c definitely can use treatment - especially with a post-prandial reading of 243mg/dl!

You do need better doctor. You might want to ask if this Endo you have an appt with currently treats LADA or MODY patients so they know about the situation you are facing? If they don't know what LADA or MODY are, you may want to keep looking! Because you first need to figure out if you have antibodies (LADA), or if you are more likely some form of MODY.

But either way you do need treatment. A good read is "Blood Sugar 101" by Jenny Ruhl. She documents why post-meal blood sugars over 140 mg/dl can lead to futher beta-cell loss and other diabetic complications. If you are indeed MODY3 - this would be a very common pattern of spikes after meals, but potentially normal fasting blood sugar levels. The spikes add up to increased cardiovascular events over the years. So for MODY3's that can be treated by orals, typically they use sulfs or something like Starlix right with meals to treat the spikes.

If you need research articles to bring to doctors appointments, just ask me and others on this board. You will need to advocate for yourself, but don't take no for an answer. Regular blood sugars of 243 mg/dl should be treated, unless you can get them down with a low carb diet (and you are interested in that sort of approach and can feel well on it). Some folks also find that increasing raw and alkaline foods in their diet lower their blood sugar levels (I am one of those).

If you indeed find out what form of MODY you are, you will potentially be in a position to help your other family members with "brittle" characteristics to better treat their own diabetes. I've been able to do this for my Uncle, because even though he hasn't done the genetic test we can pretty much assume he is MODY3, as he is on that side of the family etc.

I hope this endocrinologist is much better!
Teala

[SB_Krista]

Sometimes I wonder if the PCP's are just conforming to some arbitrary protocol handed down to them by the insurance companies (i.e. patient presents at age definitely NOT juvenile therefore T2 diagonosis, maybe prescribe metformin, the first line of meds thrown at T2s). That is what happened to me, and it was only after I saw no improvement on metformin that I got the referral to see an Endo, and more tests were run.

Lilmoe, my recommendation is to keep a dietary log, and test 2 hrs after a meal, as well as upon waking. After a couple of weeks of this, try to look at the big picture as see where you can make diet modifications. You stated in your first post that you are not overweight, so be careful about cutting carbs and losing too much weight.

Good luck!