Great Site! I would love some opinions on my case b/f my next appt. on 1/9/09

Hi! This is a wonderful site! It seems to be much more supportive than many of the other sites I’ve stumbled onto. I was wondering if anyone has any insight to my situation:
I am a 30 y/o female. I am 5’ 5" and 136 lbs. In 2002, about mid-way through my first and only pregnancy I was diagnosed with gestational diabetes. I had many problems throughout the pregnancy-my blood sugar would often go up and then plummet sometimes into the 30’s and I blacked out several times. My numbers were erratic but typically didn’t get above 250 so the doctor didn’t put me on any meds, etc. just told me to walk after eating…which of course brought on many lows. After our son’s birth, my fasting bs was taken and I was informed the diabetes was gone. (My fasting numbers were never high during my pregnancy anyway…so duh!!!) Anyhow, fast forward to 2006 and I had visited my PCP in tears with complaints of complete and utter exhaustion, frequent urination, instances of shaking, sweating, irrational moments, blurred vision, constant thirst, and the list I’m sure went on and on at the time. I had been keeping a list of “problems” hoping that something/anything would identified and fixable. I was falling asleep driving, right after I got home, etc. and I was at my wit’s end. The doctor did a OGTT (I still could vomit just thinking about it!!) Of course I felt ill after drinking it, but the closer it got to the 5 hour mark, I got weak and sweaty and had to reluctantly almost in tears ask the receptionist if I could lie down somewhere. I laid in a dark room waiting for the last draw and just shivered and cried. I got a call later the next week and the nurse said I was type 2 diabetic. My fasting was fine, but all of my numbers after the glucose intake were abnormally high peaking around 260 (if I remember right) but, my 2 hour was just under 200. My 5-hour was 40 something. I made an appt. and the doctor said yes, I have T2 even though my 2-hr. was slightly below 200 and that I should follow an extremely low carb diet and exercise often. I took it upon myself to book an appt. with an endocrinologist. She has been so supportive, but I think she has been confused with my case at times as well. I started taking Avandia and it didn’t do much, then she put me on Janumet and I fluctuated for about 1 1/2 years. My a1c was 5.3, which is perceivably normal, but I feel that my low’s cause the number to look better than things are as a whole. Also, my original tests showed that my fasting serum insulin was low at <2.0 MCIU/ML with a normal range of 5.0-35.0. I had been told that I showed no signs of early insulin resistance. Also that fasting insulin is typically in the higher than average range for T2. Not Mine??? So, now a days, I can sometimes feel when I get a “high” after eating…I get a really floaty feeling and my vision blurs pretty bad (I couldn’t read the big overhead signs at the airport recently). I have read about some of you with 1.5 and it sounds like your #'s were higher than mine from the beginning. I still have highs around 200 (on my meds.) not consistently, but they do occur and of course still those damned lows. My first phase insulin response seems to be shot as my 1 hour is often at my personal highest range and two hour can greatly vary from being as high as 1 hour or extremely low. I run at least 3 miles per week and stay active with work and running our 6-year-old around with all of his activities. I am very conscience of what I eat, but do not prescribe to “no carbs” as I don’t think I could deal with the lows. When I’m stressed my #'s are much higher. So, do I sound like I should have my endo do the 1.5 tests? I am thin with a healthy figure and have never been overweight (I was 103 lbs. FOREVER after I had my son) I just want this to go away. Oh, and my fasting #‘s which have never been a problem (usually low 80’'s) have been crawling up to mid 90’s to 100, which is high given my personal history with fasting. My questions would be: could I be LADA? What is the typical progression? Is mine progressing too slowly to be LADA and am I T2? Are my numbers similar to any of you that have been diagnosed with this? Should I even pursue the further poking and prodding of what I’m sure involves needles? After I started on meds, my insulin came up to a 6, but what would that have been about–it hasn’t been tested but those 2 times…was it a fluke the first time? A couple other “mysteries” that someone may know something about: my vitamin D, 1, 25-dihydroxy was abnormally high at 95 pg/mL with a normal range of 15-60 pg/mL…which research suggests could indicate sarcoidosis–but, the doctors didn’t seem to think much of it and ran it again and I was told it was 40 the second time so not to worry??? Doubt it’s related, just weird. My cholesterol is seemingly high and it has been since I was very young even living with my parents. The total number is 256 mg/dL…BUT, my HDL is 105 and my LDL is 124, so the ratio works out to a 2.4 which I’ve been told is excellent?! But, when researching about high HDL #'s, I found a couple universities that were actually doing research on people with freakishly high HDL over 90 as that is extremely rare. These numbers have been confirmed numerous times over the years. Okay, I am SO sorry this is so L O N G!!! Any advise is greatly appreciated in advance. If you have any questions, feel free to ask. I have an appointment in a week and 2 days and want to be prepared.
THANKS SO MUCH!!! HAPPY NEW YEAR’S!!!
Tiffany

Hi Tiffany–I am sorry you are having a difficult time. Based on what you have written, I would say it is very likely that you have late-onset Type 1 diabetes or LADA. I would go back to your endo and insist on testing for it. C-peptide is a useful test, but the definitive test for Type 1 autoimmune diabetes (at any age of onset) is antibody testing (glutamic acid decarboxylase antibodies (GADA), islet cell antibodies (ICA), and insulinoma-associated (IA-2) autoantibodies).

Then, if you have Type 1, the appropriate treatment for Type 1/LADA is exogenous insulin. Lots of times doctors are reluctant to give the appropriate treatment, so you may have to insist on it. The sooner you get on insulin injections, the better you can preserve the remaining beta cells you have, the better you will feel, and the better your long term outcome. Pills for Type 2 only hasten the beta cell destruction, which is not good.

Finally, it is common for women to develop Type 1/LADA following a pregnancy (either with or without gestational diabetes). Amy Tenderich over at diabetesmine.com developed Type 1 after her third pregnancy. In a German study which included antibody testing of women with gestational diabetes, 43% went on to develop Type 1 diabetes. In the U.S. they always say that Type 2 is likely to develop after gestational diabetes, but in Europe they are so much smarter about LADA and say that either Type 1 or Type 2 is common after gestational diabetes.

Best of luck to you. I am afraid you really have to act as your own best advocate on this one. Let us know how it goes!

Melitta

Melitta,
Thank-you so much for your response…I have been anxiously awaiting. The information about Type 1 after gestational diabetes is interesting and will give me more to look into. I will definitely push for the testing, I just needed to know that I wasn’t asking about something that wasn’t likely the case for me. I looked at your homepage and you seem to be really knowledgable about LADA and I so much appreciate your taking the time to read my LONG monologue and offer your input!!!
I will let you know what I find out!!
THANKS,
Tiffany

How did your appointment go?

Hi Tiffany - Your story sounds VERY much like mine. What did you find out back in January?

Thanks!