Hi folks, I was diagnosed Type 2 in May this year, but it is looking increasingly likely that I’m actually Type 1.5, 1, LADA (whatever). Anyways, extremely low insulin production, don’t match the T2 “profile,” antibody tests (ordered by my metabolic T2 specialist) are in the lab now.
My specialist and PCP suggested it is time for me to look for a good Endocrinologist, and there are none in my community. I wanted to ask if there are any known, good endos in the Coeur d’Alene, ID or Spokane, WA that are trusted by this community.
I’m also interested in connecting to other Diabetics in the interior PNW. I’m not sure how to find a support community, if it actually exists. Any ideas?
I would contact a few hospital social workers at larger hospitals in the region and ask if they know of any active diabetes support groups. Many of these support groups, however, only meet about once per month. I suggest that you also become more active here. This community is an incredible resource. We collectively contain deep experience with all things diabetes. And we’re willing to share! Good luck as your diagnosis unfolds.
Thanks! Honestly, I’m scared to death. Have a 6 week old baby, new job starting in a week, and felt like I figured out how to successfully be a “weird” Type 2. Now my doc is saying I’m probably Type 1. That’s a good idea to ask at hospitals, thank you for that.
And I will get more active here. I’ve only browsed until now (because I’m scared, of course).
Do a search for posts written by @Melitta. She is our resident expert on type I diabetes misdiagnosed as type II based mostly on age and/or body weight. She has written a lot on this topic and it may help you understand a little more about your situation. You can use the search function here by clicking on the magnifying glass icon that appears in the upper right hand corner of your screen,
Hi David49, and welcome! This is a great community to get support. You might also want to check in with the local JDRF (Juvenile Diabetes Research Foundation) chapter, they might have support groups. Adult-onset Type 1 diabetes is incredibly common, not Type Weird but Type 1 Really Common Standard Issue. Sadly,many if not most people with adult-onset Type 1 diabetes are misdiagnosed as having Type 2 diabetes. New UK Prime Minister Theresa May was misdiagnosed in 2012 as having Type 2 diabetes–she is now recognized as the first major world leader to have Type 1 diabetes. I write about Prime Minister May’s misdiagnosis in this blog.
Yes, I’ve discovered through research in the last week that T1 as adults is indeed far more common than most people realize. I may very well not be T1, but my doctor said she hasn’t seen someone with insulin production as low as mine and very little insulin resistance not be T1. I guess I’m preparing for whatever comes up.
I’ll definitely check into whether there is a JDRF chapter here. Thank you for the suggestions, and I’ve been stalking your posts quite a bit to try to see what I might be in for. Is it weird that my “supposedly-Type-2” diabetes is actually well-controlled in terms of my BG at the moment? I’m still having a hard time wrapping my head around it: I was diagnosed, made serious changes in diet, started taking metformin, and my A1c dropped like a stone. However, I’m apparently not making much endogenous insulin. Not really sure what it all means, although I suppose we’ll learn more when the lab results come back.
Benaroya is Virginia Mason’s diabetes headquarters. If nothing else, they might be able to point you to the resources that can help you. Also JDRF might be able to steer you in the right direction.
Hi David: Almost all adults and many/most children with new-onset Type 1 diabetes go through the “honeymoon stage” when the remnant beta cells are still producing some endogenous insulin. So yes, your story of A1c drop even without insulin is one I have heard many, many times. I am glad that your doctor is ordering the appropriate tests.
You could be honeymooning and it could also be that you’re quite insulin sensitive, meaning your low endogenous insulin production is just barely covering things now that you’ve got the metformin on board. If you’re T1 that could could persist for years or could go away quite quickly and you’ll soon need insulin to keep BGs in check. If you’re T2 odds are that metformin and other glucose-lowering drugs other than insulin should be able to control things for a while.
Good luck! I have a friend from Spokane who’s a doctor, but she’s now in Seattle. How far are you from Puget Sound? I’m sure there are TONS of great endos out there?
From what I’ve noticed, metformin in various doses doesn’t seem to actually make any statistical difference in my BG, other than in the early mornings. I’m taking 1500mg ER right now, and have the same numbers as a month ago when my GP suggested I give it a break and see what happens. What happened was my fasting went up by about 10points over a month.
Now, how many carbs I eat makes a huge difference! I suppose I’ll have a clearer idea of what to do when the lab results come back.
From your description, it does sound a lot more like Type 1, hopefully the antibody tests reveal something relevant.
Even if it is Type 1 and you’re not seeing the metformin move the needle much, there may still be benefit to taking the metformin. Some new research in T1s suggests it may be cardioprotective, spurring the growth of cardiac stem cells to repair the damage caused by high BGs and autoimmune attack. And it certainly increases insulin sensitivity and helps rein in weight, meaning that you’re likely to need less insulin and potentially have better control even if you do wind up going on insulin.
That is exactly the thinking of my metabolic specialist (T2 specialist). She said, and I quote, “even if you are T1 and start insulin, I’d like you to keep taking metformin if your endo approves. It doesn’t have a lot of drawbacks, and may help delay insulin resistance.”
David,
I live in Kennewick WA, the Tri-Cities (close to the Hanford Nuclear Reservation) and will most likely be moving to Spokane in the near future myself. I asked my endocrinologist for a recommendation of a good Dr. up there, she told me to go to the Rockwood Clinic and ask for Dr. Wysham. I trust my endo and think you should approach the Rockwood Clinic in Spokane as well.
For background I was initially diagnosed as T2 and “controlled” my BGs with diet for almost 10 years. When it started rising I tried all the standard T2 drugs, none of which worked. Finally my endo suggested I be tested for T1 indicators and I came up positive for insulin antibodies. That was a few years ago.
BTW: Where in the PNW do you live? I grew up in northern Idaho, St.Maries and before that Red River Ranger Station (close to Elk City, I’ll be surprised if you know where that is) before moving to Spokane in the early 80s.
Thank you for the solid recce, I’ll definitely check it out. I still haven’t seen the lab results, so who knows what is going on (I don’t), but it’s good to know that I may be able to control this with diet a bit longer
I’m an Arctic researcher affiliated with one of the Universities here and stationed in Moscow for the next two years, although we’d love to stay (the area around the Palouse Divide is, basically, heaven on Earth as far as I’m concerned). I’m originally from VA, but moved out here a few years back. Spokane/Spokane Valley is about 1:40 drive from here, so perfectly doable as long as it’s not every week!
And given how much field work I’ve done in the mountains… I know exactly where St. Maries and Red River Ranger Station is! Were you or your folks with the FS?
Yep,
My dad worked as a civil engineer for the Forest Service (FS) helping build roads for the logging companies.
I lived at Red River for 4 years beginning when I was 5 and then moved to St. Maries and spent 7 years there then on to Spokane.
I’ve been to Moscow ID many times, really like it there.
Hopefully you won’t have to make the drive to Spokane too many times in the winter, the roads can get pretty nasty. Although as an Artic Researcher you’re probably pretty experienced at driving on icy roads.
