My diagnosis in 2005 started my journey through the maze of confused diagnoses, rambling and bizarre medical treatments, learning about low carb and becoming a diabetes advocate.
Diagnosed T2 in 2005, the doctor simply told me my fasting blood sugar was over the limit and it had been that way for the last couple of years. So started my journey through the maze of confused diagnosis, rambling and bizarre medical treatments, learning about low carb and become a diabetes advocate. When he ran my A1c it came back at 8%, not bad in the scope of things, but I had diabetes. He promptly gave me a prescription for metformin and told me that I was “fixed.” Boy was he wrong.
I eventually got a meter and signed up for diabetes classes. I was taught to eat 60 g of carbs/meal and have two snacks with 45g of carbs. By spring I had started to realize that I wasn’t going to just fix this. While my doctors thought I was “ok,” I really wasn’t and things like the diet just did not work. I read Dr. Bernstein’s Book and joined his forum in 2006. I had to become smart about diabetes and help myself. So started my journey to learn more about diabetes. Since then, I’ve read voraciously, both books from libraries, but also a great deal of literature. I have access to much of the research and I am trained to understand the topic although my education is not in medicine. I am not a doctor or medical professional.
Throughout the intervening years, I followed a very low carb diet and kept my blood sugar swings very limited, but I still had elevated fasting blood sugars. My A1c stayed in the mid 6s despite a range of increases in my medication. In about 2008, I started the insulin conversation with my doctors, but none would consider it. I switched doctors, repeatedly, and in 2010 after seeing a new endo and trying combinations of triple medications, I reached a breaking point. I had been studying insulin use for quite some time and I concluded I had to help myself.
These days I am lead administrator here at http://TuDiabetes.org. Some of you may remember me from way back when I used the name bsc and used Alfred E Neuman as my avatar. I still use Alfred and bsc over at http://DiabetesDaily.com, but I'm still the same guy.
We are exploring a new way for everyone to do profiles. If you click on my avatar you will get a pop-up card. If you select my avatar on my pop up card you will be brought to my main summary page. On my summary page at the top you will see a hyperlink “Tudiabetes.org” which if you click it will bring you here where I share my profile, my story and have a place that people can comment on my profile. I’ve also conveniently placed another link in my description.
I miss being able to click on someones profile and see their story. It makes them a real person. And hopefully this will bring us back to a way of leaving personal comments for each other, I know some of you missed that.
@BadMoonT2…I agree 100%…I never even visit my page and haven’t bothered personalizing it at all. Hasn’t seemed worth the bother. I thank Emily for at least bringing my old avatar along for me at transition…
It’s a good start, Brian!..I still think we need some more telegraphic info–as much as folks want to divulge. I enjoy telling stories and could easily write a profile like this, as could others. But many people don’t like to write, or are embarrassed by their English, or otherwise would be more comfortable “filling in the blanks” as used to be so easy…I just checked my page for the first time in awhile (see below) and was reminded another reason I never go there. I still find all the idiotic Tallies incredibly offensive. It turns participation into some kind of contest. Very much NOT my cup of tea…
Anyway…thanks for giving thought and time to developing this new approach…Blessings…Judith
Great profile, Brian. Thank you for taking this lead to not only add to our community, but to share your story.
When I first saw your Alfred E. Neuman avatar, I laughed and thought, “Here is someone I should get to know!” I quickly discovered through your posts that you had done quite a bit of research on this “D” thing.
Hi, Brian - I have been absent for a couple of years from this forum and the ADA site and posted as Gracie. My real name is Anni and without the support of these groups I would have been sunk - I was definitely an “outlier” - I’m a DNA test-confirmed MODY-3 (defect on the HNF1a). And my story is really quite identical to a poster on one of the threads either on T1 or T2 or “Could it be MODY?” Right down to the I:C ratio and insulin sensitivity factor!!!
My gene expressed at a ripe age (58) - but this is typical in my fam - and stress was definitely a factor. Both emotional (my son had been in rehab for alcoholism 3/09-11/09; I had a thyroid cancer scare during the holidays; surgery to remove suspicious module which was benign 1/10, should have solved all - but I did not respond to Thyroid Hormone Replacement therapy and became severely hypothyroid over 9 months. Finally fixed 10/10. 12/1 dx’d Diabetic.
Actually, I’m coming back on here because my body is extremely sensitive and I have always suffered from sudden pops in BG of even 35 points. I really work to control my glucose. While I do allow myself treats - I am much better off if I limit heavy carb and carb+ fat meals.
If I have a miss on the high end - the sickness plus, because I AM so sensitive to insulin, compensating can end up ruining my day.
My family and others simply have no understanding of the kind of impact this has on my life. The nausea, the headache - and even joint aches I get from reaching a BG of 155 due to misunderestatimating carbs or the impact of carbs+fat.
Yet, with a sensitivity factor of 100, my pump is set so I cannot even give myself more that 2.5 carbs at once.
I feel like I thread a needle every day. For example, if I gave myself a full unit before a meal and food did it come, I’d crash. Just one unit.
So . . . Anyway, I’m sorry for talking your ear off - the real reason I’m writing is that with the new format, I could not find the MIDYgroup. I did see your link, but it won’t let me in. Can you help me figure this out please,
@Gracie_n_RiverCity, of course I remember you. Unfortunately there are no groups on this new platform so you won’t find the MODY group. All of the topics associated with MODY were migrated over and if you are looking for something the search on the new version of TuDiabetes is very powerful and you should be able to find things easily. If you have a particular link that is broken post it and I should be able to help you find it.
hi Anni, welcome back!! If you want to find all the discussions on MODY, you can search for them by clicking on the magnifying glass in the upper right corner. I typed “mody” there, and here’s what came up https://forum.tudiabetes.org/search?q=mody
let me know if you have any questions about our new format.
In that case, would you suggest posting a new discussion topic? Maybe called "Ectremely Sensitive??? Anyone Else out there?
Should I post under T1+LADA? Should I simply come back on and post my story as though I were new? I don’t have to go into ALL the gory details. Though I think that sharing some of the history will be helpful because I and my children are being followed by Kovler and I now get their Monogenic Minute Newsletter. I think its quarterly. They still swear I should be able to manage on Sulfonylureas. But . . . I think that the problem was that by the time I was dx’d I had so little ability to respond to food - and I was so old (haha) that my poor beta’s had pooped out. I just looked at 20 carbs at popped to 200!
Okay, I’m talking your ear off again - will wait for ad ice where to post. Blessings.
Anni here - long time no talk. I just wanted to let you know that this past weekend, I attended a Conference in Pak Brook put on by Kovler for people in their Monogenic Diabetes Registry. I met a number of the docs, participated in some research (they slapped a CGM on me and monitored me for 2 days), listened to lectures, met a few other MODY-3s.
It was very interesting. Much of the work they do - probably the majority, is in pediatrics. So they have focused on Neonatal/GKC and research to ID new genes. I think that may be why adults who contact them looking for help really don’t get their needs met quickly. It’s not their priority. The other MODY-3’s there were families with children. You see in my family, we are strange - our gene expresses/activates really late in life. My theory is that it’s because we are SO insulin sensitive, we can limp along on. Broken pancreas for a long time - but who knows. My insulin sensitivity factor on my pump was initially set at 100. It is down to 85, now, 4 years later.
The other thing I learned is that their “claim to fame” is Creating Miracles by freeing Monogenic Diabetics from insulin through the use of sulfonylureas. Of course, it’s not for everyone - but they are very proud of their success of liberating many children from needles.
They do this because Monogrnic Diabetic’s beta cells HD e not been fully destroyed by antibodies - the defect is elsewhere in the system. As it was explained to me, it sometimes takes up to 7X the doses, but there have been no adverse side effects. Hmm.
Dr. Philipson, the Head of the Unit MD, PhD, Professor of Medicine and Endocrinology and Dir of the Kovler Diabetes Ctr) was eager to set me up with a trial, but my personal reaction was actually that I need to fix my Thyroid issues, which I think are still making me sick first before I go messing with a 5.5 A1C right now. He’s going to refer me to some one at University if Cincy Medicine. I just wanted to let you know what I had learned though.
They continue to identify new Gene’s all the time. Did they test you or Athena???
I am personally am a little unhappy that Kovler and Exeter are now waving around “Miracle” saying that people with MODY can just put away their insulin and that they are “chosen people” and won’t suffer complications from elevated blood sugars. I think that is a little irresponsible, but it is good press.
Well, to be fair to them, it may be that when kids get this therapy early. It may be that their beta cell function is enhanced or preserved. And it does not work for all.
Personally, I do not believe I am a good candidate. I do not like the loss of control. Why would I give up personal control over how much insulin I of down to the micro level with my sensitivity factor? As well as how sick I get with rapid pop of 40 - 50 points in glucose. 85-135 or 110-150 it does not matter.