Thanks everyone for the help from a few weeks ago.
It pretty much took me 2 years to find a doctor to listen to me and do the freaking blood work. I presented as T1 on everything (Gad 65, Insulin antibody, islet cell antibody, and C-peptide). My C-peptide is .26 ng/mL
I had already been doing the bolus/basal thing with insulin, so the diagnosis is a good thing for me. No more doctors pushing T2 meds on me, and I can get the equipment that I want (CGM, pump).
I'm pretty sure I would have had this whole thing solved 1 year 10 months ago if I could prescribe my own meds and bloodwork. :(
Im glad to hear it! It took me all the Type 2 meds and 6 years...now Im finally being treated as type 1. What a waste of time, money, and years off my life.
Scott, I am sorry it took so long, but good for you for pursuing a correct diagnosis for yourself. And I am glad you were already on insulin. I have both a pump (Animas Ping) and a CGM (Dexcom) and both pieces of technology have definitely made my life better. And on a different note, even though you are not really newly diagnosed (you are newly correctly diagnosed), have you read my top ten tips for the newly diagnosed adult-onset Type 1? Some parts may be useful for you, I hope.
I'm newly diagnosed, but have been using insulin (apidra and levemir) for over a year, and while I haven't read through them, I own two of those books. Honestly, my real crisis point with the diabetes (well aside from the day I got the initial T2 diagnosis in 3.5 years ago) was about just before I got on the insulin. I was really feeling sick back then.
I was fortunate enough to read Dr. Bernstein's book very early on when I was diagnosed as T2. While I didn't go ulta low carb, I didn't follow ADA either, and my recollection was that he was somewhat supportive of early insulin treatment. Yeah, there is controversy in some of what he say, but his book is very comprehensive and has a ton of good information also. I lost 60 pounds pretty quickly going low carb and had good numbers. But after a year and eating low carbs, the metformin wasn't cutting it anymore. I was waking up to headaches, having constant headaches, running high BG (for me at least), and getting sick on the metformin (throwing up 2 times a week).
This was about 2 years ago. I had just moved to the Jacksonville area and was having a hard time finding a doctor. The PCP I went to (after waiting 2-3 months) told me that since my A1C was under 7, he wasn't going to change anything. The walk in clinic stated they don't do diabetes management. A few of the endos refuse to take patients without a referral as well (even though my insurance covers it).
So by the time I found an endocrinologist and waited the 2+ months for a new patient appointment, I had had my fill, and pushed hard to get on some insulin (wish I knew they sold the older types without a prescription). My attitude was that I didn't trust the other oral meds and if using metformin while going very low carb wasn't cutting it, I should be on insulin. I started on levemir and quickly realized that bolus was also needed. The endo turned out to be pretty weak in the end, but I was just happy to get the insulin I needed. I didn't get any actual instruction on injection or bolus/basal, and it was only recently that I got a glucagon kit for emergencies.
Then, a few weeks ago I found a good endo who was willing the blood work.
You may also want to look at Issue 55 of Diatribe-- the article on treating lows, and Gary Shreiners new book on new treatments--his info on dosing insulin for different kinds of meals has helped me. Last but not least, the 4th edition of Taking Control of Your Diabetes, by Steve Edelman--I learn something every time I read it. If you get a chance to attend a TCOYD coference, go for it.
when I was diagnosed as a type 2, then a type 1. After finally going to an Endocrinologist he said you have LADA once he saw all of the blood work. that was back in 2006 (I created this group back then as there wasn't a group like this! goes to show you how long Ive been on this site lol). I learned as much as I could about it. What a confusing type of diabetes (at least to me). Then in 2009 I was re-typed as a type 1 (goodbye LADA).
I am glad that you were proactive and tell drs hey will you listen to me (i'm having that issue that isnt diabetic related but related to what happened to me in January and the same thing happened last month) and got the answers.
Glad to have you in the group (I'm trying my best to be more active! but medical issues over the years just gets in my way).
My son is on the autism spectrum, and has some other issues. With him I have seen a LOT of doctors, and one sees the same trend. A good chunk of the kids on the autism spectrum have medical issues that could be causing it or at the very lease creating behavioral problems for them, but it is very hard to get doctors to look deeper.
Definitely more important for us to be active and take care of ourselves than being online, but it is nice to be able to communicate with people who are dealing with and have dealt with the same issues.
What is the best way to treat this type of diabetes? What has worked for you? Insulin doesn't do anything for me. Even when combined with oral medications like Metformin. I also exercise and eat low carb. Is there a way to treat this type of diabetes without insulin. I've taken insulin for years and it really makes me feel like and look like crap. :)
You may be one of those lucky people who have symptoms of both t1 and t2--especially insulin resistance. A t2 friend of mine takes more insulin before each meal--twice as much as I take all day, and my A1C is over 3 points lower than hers. It takes a while to adjust a pump to you from the generic settings, and then after a while you change and have to adjust the settings again. If you are t1, there's no way around insulin.
Have you done a c-peptide test to get some idea of how much insulin you make? If insulin is needed, it is needed. Not much else to do aside from taking oral meds to increase insulin sensitivity. Maybe something else is going on though. Are your BG numbers good? Maybe basal/bolus aren't right?
The change over time is a PIA because I kept having to change what I was doing, and was fighting doctors about needing insulin.
