Confused by my newly diagnosed T1

1

About 8 months ago, I had a routine physical and the results from the blood test put me in the prediabetes range. They were at the low end, but a little over a year earlier, my mother also tested prediabetic and my maternal grandmother had diabetes. Given this information, my doctor had me reduce my carbs and cut much of the simple carbs out of my diet. I was already exercising and I’m thin, 5’7" 160lbs at the time. I did as Rx’d and went in for follow up tests 3 months later. The fasting glucose crept up a little but my A1c had actually gone down (sorry I don’t have any of these initial numbers with me). The PA, not my doctor, felt like I was doing okay and should just keep doing what I was doing.

Feeling fine and confident that things were under control, I loosened up a little on diet. I was still mindful, but permitted myself “cheats” frequently. My most recent follow-up test was about a month ago, and the results came back with fasting glucose doubling and A1c at 9.14%. I was shocked and in a bit of a state of disbelief. I told my doctor I wanted to see if I could get this back under control by tightening up my diet and more exercise without meds. She agreed to give me a week, and had me testing my BGL’s over the following week. I began cutting a lot of carbs and doing a lot of research, leading me to bloodsugar101, among other sites. I also added 20 minutes of aerobic activity after dinner. My numbers came down quite a bit. After meal numbers fell to the low teens, but fasting remained higher, dropping to 121 last Friday.

My doctor wasn’t happy with my fasting numbers and put me on a super low dose of metformin (250mg/day). My numbers since have ranged from 115 to 91 fasting, and 116 to 91 after meals, with most post-meal numbers being <110. I’ve been feeling pretty good about these numbers, and I’m getting a good feel for what I can eat and when I should and shouldn’t eat certain things.

My confusion comes from my doctor diagnosing me as Type 1. Her diagnosis is based on the make up of my body, but not through any actual tests. How important is it that we ID the type? I go back again next week and I want to be ready to ask her for more tests if that’s necessary. Like I said, I feel great that the numbers have come down. But I want to know what’s ahead for me, to the extent that is realistic to know.

There’s a lot of other things going through my mind too. The why me, why now questions. Reading others’ experiences here have helped me deal with those, somewhat. I get really upset at not being able to enjoy things that I used to be able to eat without worry. I don’t have a sweet tooth and I didn’t binge on things. But it’s upsetting knowing that I can’t just grab a treat if I want to now. I wonder how my life is going to change, and what type of new uncertainties lie ahead. Right now, I’m focusing on the positive of eating a better diet. I powerlift and I’m training for my first meet, coming up in July. Focusing on my training has been a key factor in keeping my head straight in dealing with this all. My diagnosis is still so new, I think more emotions are going to come in the weeks and months ahead.

Thanks for reading through this. I’m really happy to have found a community like this. It’s already been helpful to me, and I’m certain I’ve only experienced the tip of the iceberg in it’s usefulness.

2

Glad you’re here; definitely the right place for you with lots of experience and support available.

I think you’re doing everything right from two perspectives: reducing carbs, increasing exercise, working on getting the numbers down. But I think you are also absolutely correct that the doctor should not “assume” which type you are just by your body type (or age). I highly recommend you have him do c-peptide and antibody testing. The c-peptide will tell you how much insulin your body is still making. Type 1’s make little or none, type 2’s make average or excessive amounts (which they can’t utilize well due to insulin resistance.) The antibody testing will be even more definitive. Type 1 is an autoimmune condition (has antibodies). Type 2 is not. There are exceptions to this rule, but in general it is very definitive.

My guess? You could be LADA. It is a form of Type 1 that comes on more slowly. Do you by chance have thyroid conditions? (That would increase the likelihood you are type 1). You could also be Type 2 and your condition is progressing, but it seems a tad quick. You need testing, because, you are correct, it will give you a much better idea of what lies ahead. You seem like the sort of person that likes to know that and to begin to learn what is needed. Knowing your type will help you do that.

3

Your diagnosis sounds similar to mine. My a1C was slightly elevated. My own thought is that I just caught it really quickly and didn't have the dramatic symptoms or numbers that many T1s experience.

I was 24 at the time, slim, active and there was type 1 in my family, yet my family doctor tried to treat me as type 2. I tried diet, then two weeks later went back and tried medication. I was eating spinach and getting high BGs. It wasn't until I went to an endocrinologist that I was put on insulin and treated as a type 1. I've been type 1 for almost seven years.

I would ask to see an endocrinologist (if this is a GP you are seeing). My endo did a C peptide test which showed that my pancreas wasn't producing enough insulin. He said it didn't really matter what we called it, but I had to go on insulin because diet and medications wouldn't help.

I hope this has been helpful. I understand your confusion over your diagnosis. There's a lot to learn and understand, but it will bet better!

4

I agree with the others that you should have a C-peptide test done. Often that test will determine whether or not you are T1 or T2. There are plenty of thin T2s, so you could very well be in that club.



If it is possible, it is important to know how you fit into the often-confusing D mosaic. Although managed care is important for all diabetics, for T1s it is often more critical, especially if you are newly diagnosed.



FWIW, I am a T2 on insulin, not because I was at a stage where I had to go on it, but because I wanted to try it. It has worked wonderfully for me, and I prefer the injections to dealing with the side effects of the medications. The finger sticks to check blood sugar actually are more of a pain than the short needles I use for insulin. I can barely feel them half the time.



You have lots of treatment options available to you, but finding out where you fit into the diabetes picture is a necessary early step. I also agree with those who recommend you see an endocrinologist instead of a GP to manage your care. They tend to be much more knowledgeable on the specifics of diabetes.

5

Thank you all for your replies. You’ve helped confirm my feelings that I need to have a complete diagnosis. I will bring this up with my doctor, and ask her for a referral for an endocrinologist.

6

Did the doctor order antibody and C-peptide tests? Without those tests, nobody can say for sure what ‘Type’ you are. A diagnosis based on your body shape is flawed and frankly, shows a lack of professional judgement. There are thin Type 2s and fat Type 1s!

If I were you I’d keep an open mind and just concentrate on blood sugar control. As long as you’re getting the right treatment, and not being screwed by insurance companies, then knowing your ‘Type’ is just a diabetes existential crisis.

It sounds like you’re tackling this in a very positive, pro-active way, so congrats! I understand your feelings about treats, but strangely enough, it can be possible to re-define the concept of a treat so that it is a low-carb treat. E.g. a perfectly ripe avocado with vine-ripened tomato salsa. Or spicy coriander/cilantro humous with crunchy cucumber sticks. Or the best, most succulent olives you can find…

7

Actually, Type 1a is an autoimmune condition. That’s what most people are referring to when they say ‘Type 1’.



But there is also Type 1b diabetes, which is not autoimmune. E.g.see this link.

8

No further tests have been ordered yet. I go back this Friday and will bring this up with her.

With diet, right now, my biggest difficulty is getting in enough calories! It’s amazing how easy it was to get a 3500 - 4000 calorie/day when I didn’t need to worry about carbs, or at least not as much. Those were still mostly quality calories, and I need them in my strength training regimen. I’m now working on increasing the lean proteins. There are plenty of calories with those, it is just a matter of altering (mostly) morning diet. My basic strategy is keeping carbs very low during the day, and then being a little more loose after training. So far, my levels have shown this to be effective. I get numbers in the low 90’s two hours after eating moderate levels of carbs and having a heavy training session. The non-training days are the hard ones right now. Gone are the days where I can just down 1/2+gallons of milk to increase calories and protein - and I love milk :frowning: