Friday, September 15, 2006

This is a first post

And so I jump into the blogging world a bit late. I had thought about doing this before, when I was going through the endless nightmare (well, to me, anyway) of trying nothing (thanks, Dr. A!) and all the "usual" treatments. It was just such a negative time, though. Not because of the diagnosis; I had no problem with that (stay with me), but becuase of the utter lack of treatment options for someone like me. Well, there weren't someones like me; that was the problem. I first asked for insulin in January, but I didn't get it until June. It has completely changed my life. I'm not tired all the time, like I was for years before diagnosis (hmm)! I can correct a high before it saps all the energy out of me! It's definitely complicated for me, but I am so willing to do it. I find it sad and wrong when people tell me (and they do tell me) that I shouldn't be on insulin.

So, more about me. My diabetes manifests itself in a strange way. If I don't eat anything, my blood sugar will stay the same for a long time but eventually drop. When I do eat, I'm much like a Type 1. I don't understand it and neither do my doctors. It sounds a bit like MODY, but not entirely. I could try to get the genetic testing and hope I have one of the six genes they know about. It wouldn't change my treatment, though. I already feel like I'm explaining too much, but there's not really a shorthand for "I'm a freak!" Just kidding. Um, hi? How about that Blogger Beta? *ducking*



Jenny said...

Glad to hear you were able to get on insulin and are getting such good results.

Diabetes really is not a disese, but a symptom, high blood sugar, shared by a lot of different diseases--and appearing in many different configurations.

It's really frustrating that most doctors are so ignorant about it and assume any high blood sugar in someone over 25 is Type 2 and "caused by obesity."

I hope you have read Dr. Bernstein's Diabetes Solution, by Richard K. Bernstein. Even if you don't eat the way he recommends, you'll learn more about diabetes from that book than any other one on the market.

Sudden onset without an exacerbating condition like pregnancy or steroid use makes it unlikely that you have MODY, which tends to be there all through life and then get revealed when something stresses the marginal blood sugar capacity.

LADA is more likely, but even then there is more than one pattern of onset of LADA so probably more than one underlying condition.

One important question: what do your insulin doses look like? Typical for a honeymooning Type 1? Low for a Type 1? Increasing as time goes on?

That might help identify the underlying issue.

Lili said...

Hi Jenny! You inspired me to start blogging.

I'm not so sure the onset was sudden anymore. I think it's possible that I had elevated postprandial blood sugar for years and only caught it when it was high enough to give me symptoms. Luckily I was able to test since I live with a Type 1.

I have read Dr. Bernstein's book, but unfortunately an ultra low carb diet didn't work to control my blood sugar and less than 75g of carbs/day leaves me extremely tired. I might write about that soon - I have a theory. Anyway, that's not to say that I don't like Dr. Bernstein. I do, and I know his plans works for many people.

I was eating 120-150 g of carbs per day for a couple years when I started getting symptoms. Dr. A, my first endo, decided to treat me with a "low carb diet" - 210 g/carbs a day! For some reason, he's not my endo anymore.

I have taken certain antibiotics and prednisone before (which are supposed to cause diabetes), and currently I'm taking, among other things, a beta blocker, an inhaled steroid, and a birth control pill. Those are all supposed to interfere with blood sugar, although my endo (Dr. Z) said he didn't think they would increase my blood sugar by more than 30 mg/dl. I've been on two of them for about three years. So I'm not sure if it's related. It does look as if I've lost some beta cells recently, though. It's hard to know also without the family history, but I don't know it.

My insulin ratio is 1/14 and my correction factor is 55. Does that help?

So nice to see you here!

Miriam said...

Hi, Lili. I stumbled across your blog by accident, but I'm SO happy I've found you!

I'm 19, diagnosed with reactive hypoglycemia about three and a half years ago. My father also has reactive hypoglycemia.

As early as six months after my initial diagnosis, I began seeing blood sugars over 140. My endo told me it was hormones and I shouldn't worry.

A year and a half ago, I asked him to test me for antibodies. He tested for anti-GAD and anti-islets. Both came back negative.

My c-peptide hovers somewhere near mid-normal. My A1c is 5.3, steady for the past few years despite highs OR lows within the weeks preceding.

Last year I was put on inhaled steroids for "asthma" (which is a different nightmare altogether). Suddenly, I was seeing 120's where I used to see 100's. My endo finally put me on Januvia after I complained about having been over 200 during a class because I'd had one slice of whole wheat pizza for lunch. (I also crashed to 59 within an hour.)

I went off the Januvia when I went off the steroid, but since the month after, Ive been seeing spikes over 140 after eating, sometimes up to just barely 200. I settle back into normal within 2 hours almost every time, but sometimes I stay above 140 for an hour or so more.

If I don't eat for a few hours, I get terribly irritable and shaky, even though my blood sugar is usually in the 70's or 80's then (I don't feel lows, I feel it when my body brings them back up).

I love my endo, but I'm at my wit's end at this point! I saw him on Friday and he said we'll see what the blood tests show. I've been watching my A1c and my c-peptide for a while now. My A1c will be normal and he won't put me on anything if my A1c and c-peptide are both normal. However, I actually ate breakfast by accident in the car on the way over, and ten minutes after having my blood drawn, I was 145. FINALLY! Maybe he'll figure it out!

I'd really love to get your perspective on some things, even though I'm a little young for LADA.