You are right, I think there are a lot of us here so it is time for the medical community to start educating themselves. I had tons of testing, some with my now former doc the day he diagnosed me, and then in the hospital and with my current endo. I don't know my first c peptide yet, the second one confirmed me insulin dependent with a very low .25 as did my reaction to it - I think I am still producing some insulin though so that is a good sign and I'm still super sensitive to it. I also had a postive gad 96 and wieght loss and then dka etc., so they said I had an autoimmune reaction. Although my endo says he thinks this was going on for at least two years. I now found out my non fasting bg last October was 106. A little high but not anything to raise eyebrows, so I wonder about that.
I have heard of type 1 becoming insulin resistant and I hope that never happens to me.
Why did they assume you were type 2 after dka? It is much rarer to go into dka I think for type 2. Sorry they put you on that med, I hope it didn't hurt you. I was only on metformin for 1 day as it made me feel even worse- but it did lower my blood sugar bit at least temporarily.
This was totally on point. I only wish that I had been able to read it when I was first diagnosed in September 2009 at the age of 57. Only recently have I started to cut myself some slack for not having perfect numbers and accepting that they don't really exist, especially for Type 1's. Every day is a challenge. The most difficult thing to accept is the fact that I will probably not see a "cure" in my lifetime. Sometimes I wake up and for a split second think it has all been a dream. At least it is a treatable disease and for that I am very thankful. I found this this posting to be so helpful, even three years into it and thank you for such an insightful and relevant article.
Faultless top ten list in my opinion, Melitta, thank you so much. Now that I m in my 9th month after diagnosis, I m proud to say I have taken care of maybe nine out of these ten tips, which makes me feel good. I think as the "final" acceptance goes I still have a long way to go, but it is information and support like this that pave the way to my personal PWD (Peace with diabetes) ;)
Thanks so much for this info. Newcomers to the diabetic world and are so thankful to find this community. There is so much to learn and I have found it to be overwhelming at times. Will be looking into a clarifying our diagnosis.
Thank you so much for the information. I have just been diagnosed with typ1. Had my first DiabeticDoctor appointment. He and the Dr. at the hospital said that typ1 could turn into typ2 diabetes. Is that true? it sounds like rubbish to me... but if that is possible could one of you explain- please
Hi WhyThat: Type 1 diabetes does not turn into Type 2 diabetes. But a person with Type 1 diabetes can develop insulin resistance (a hallmark of Type 2 diabetes). The patient still has Type 1 diabetes. Type 1 doesn't go away, doesn't change into another disease, and has no cure at present time.
About grieving: I am mostly angry, frustrated, maybe even depressed.. cause I also have ADS and being structured is always a fight. And now "THAT" as if I needed it... I certainly did not! ask for it. I have not grasped the whole of it yet... The one that realy is grieving is my Mom. When she came to the Hospital on my second day there, she just burst out in tears. Why That is a real blow...
A new diagnosis, for most people, is devastating and life-changing. And grieving takes a LONG time. But if you can get your blood glucose to a better level, that helps.
Thank you thank you thank you for this post! Originally misdiagnosed as type 2, and it’s been 1+ yrs since t1d diagnosis at age 28. I’ve learned a TON this year, but your post really brought a smile to my face and new wave of confidence. Thank you again
Hi Matti: Thanks for the kind words! For whatever reason, this is my most "popular" blog post. Glad it brought a smile to your face, and especially a new wave of confidence!
I am newly diagnosed Type 1 as of 12-13-14. I am having trouble with a lot of lows, 40's, 50s, 60's. I am experiencing a low every third day or so. I am on 1.5-2 units short acting and 8 units long acting at 9pm. My short acting vial ran out and I now realize that I have to make a decision between 1 or 2 units with my Humalog pen. Sometimes I am afraid to go to bed (that I won't wake up). After reading this, I see that the honeymoon period is supposed to be a good thing. I thought it was a bad thing due to my body producing insulin sporadically (giving me lows with my injections).
Thank you for those tips. I have been Type 2 for almost 9 years but have never fit the profile. I am 114 pounds and seeing several diabetic complicstions even thiugh I am fairky well controlled. My Endo ranna c-peptide test and it came back 1.1, but the GAD was normal. I need tomget her tomrunnthenotherntests you recommended.
Once again Melitta you nailed it! I would add htat people mis-Dx’d with type 2 insist, insist, demand, throw a tantrum whatever it takes to be sure the MD changes the records to Type 1. There are people still fighting for their insulin to be covered by their health plans, getting enough testig supplies, not to mention pumps and CGM’s. The health care providers have to get it right. I still hear of people running into problems - having to pay retail for insuolin as an example, because the record wasn’t corrected.
Great post Melitta I was misdiagnosed and have complications from this. Found #doc about 16 months ago learnt more in this time than previous 18yrs T1. Thanks.
Hi Melitta,
Thanks very much for this…it was awesome. I have a question in regards to the IAA - understand it doesn’t Dx LADA is you are using insulin already. However, If you have no or little insulin production (c-peptide low) and very high anti-bodies on this test, could it indicate anti-bodies against the injected insulin? FYI - I had anti-bodies for the panel (GAD, IA, IA2 etc) so no question that I’m LADA, but was curious of your opinion.
