I want to thank everyone who responded to my concerns. You all are so informed and willing to share. I know now what I have been missing this last 16 months after I joined but for reasons unknown was blocked from sharing or receiving form you highly informed Type 1 ers.
I can see not only have I not been doing all I can for knowledge of my own T1D but have had sorely lacking medical assistance. My first dietician did get me on the CGM and advised me to be tested for T1D when I was Type 2 for 18 months. I just read about some dangers of Metformin (cognitive) and I was taking 200mg daily with sky high BG. I am still alive and (apparently) have no complications. Thatâs what my last endo appt. printout said.
Again I have learned more in one week than I had guidance for over three years. (dx. in 2022). One problem is my expectations of my endo were higher than he/she were willing to provide. I also get a kick out of all the diabetes abbreviationsâŚMDI etc. First time my endo PA referred to âbolusingâ I had no idea what he meant and he didnât explain. He said it matter of factly like of course I knew. Most of my info on diabetes has been from online and much of it good quality and was helpfulâŚ..Especially about Dawn Phenenoma which I have believed I have had for 3 years (but that was dx. as Type 2 mostly)
My first (and only) real endo told me it would take 12 years with diabetes for âdamageâ or deathâŚreassuring. Presumably that was with uncontrolled BG.
THANK, THANK THANK YOU ALL.
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The damage or death thing in 12 years? Ignore it! Really. The life expectancy used to be lower for type 1âs. Joslyn gave out 50 year pins to anyone that made it. But now there are numerous people that have made it 75 years and I think they might be giving out pins for that. And we are talking people with poor control for a long time when young and as adults as there were no CGMâs, you peed on a stick to determine dosing and you couldnât eat anything other than a regimented food program at specific times.
So just work on better control now, I think as we age itâs probably more important and count it as our genes and lifestyle still probably have a lot to do with our life expectancy!
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@Marie20 is spot on! When I was diagnosed in 2007, the emergency room doc said that I could avoid complications for 15 years if I maintained good control. When I asked my endo about it he said âBull***t!â I think the ER doc was trying to give me some realistic âcomfortâ. He was young and 72 (57+15) might have seemed to him like a respectible age to reach before complications began to limit my life.
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thanks again Marie. Having been diagnosed at age 72 and floundering not really having good numbers for three years the 12 year thing was somewhat reassuring yet I thought unrealistic.
After all, Mary Tyler Moore lived to 80 and she got it at age 33
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can I assume that you went to Joslin also? Early after your diagnosis? Iâm never been told about it until the community told me. The closest one to me is 200 miles not too bad.
How long have you been living with Type 1?
was your Endo implying that 15 years was too long or too short to avoid complications?
@Andrea8 No, Iâve never been to Joslyn. This forum is where I originally learned so much!!! And was able to start refining what I learned. Sugar Surfing site is a place to add on more knowledge. He sells a book, but tons of free information is on his site too.
I was misdiagnosed for over 8 years and given very little information from doctors.
My endo thought complications could be avoided for more than 15 years with reasonable control. When I asked him about what the ER doc said, I was three months in and my A1c was around 9. I think his line was - âWhatâs a complication - a speck of protein in your urine?â
I was upset about being misdiagnosed for almost 3 yearsâŚtaking so much unnecessary meds and also flying high blood glucoses. Thought of the â12 years without damage commentâ by endo.
That sarcastic remark from your endo âspeck of protein?â was similar to the condescension and mocking I got from the PA I was transferred to after 2 hour long appts. with the ârealâ endo. Thatâs why I left that practice only to get an NP who was solely focused on âget a pumpâ or else without even discussing my current status. Hopefully this new one I am going to in three weeks will take me as a new patient (wasnât taking any thatâs why I got the NP) First visit, NP pronounced âyou are assigned to me and you will stay with meâ
I am going to do that I:C test you advised. Bought 2 small Skittles packages to put in car for hypoglycemiaâŚnormally use grape juice (19 g) for countering it.
Just listened to TCOYD podcast about early diagnosisâŚâŚ.and again they said Type 1 ânot your faultââŚ.first endo said that 3 times in 10 minutes. My brother DX Type 2 at same age as myself but he keeps insisting that I have the same form but âa much more serious caseââŚDonât correct him anymore about it.
If my endo was mocking anyone it was the ER doc - it certainly wasnât me. The point is that complications are are a very broad category. The classic complications - more common thirties years ago than now - including blindness and out of control infections leading to amputations are not the only negative consequences of diabetes.
Early stage 1 kidney disease is a complication and something that has to be managed but it isnât devastating. For a doc to make broad statements about complications to a newly diagnosed patient isnât helpful especially now that our tools are so much better.
Until a few years ago when integrated pump - CGM systems came out, I considered diabetes a sleep disorder since I woke up several times a night to make sure that I wasnât going too high or low and then had to figure out if I should do anything each time. No better way to mess up a good nightâs sleep.
I agree with you Marie we have a lot more tools in the toolbox now and the undue stress put on us just for sake of the diagnosis was unfair and unfounded. CGMâs are a must for peace of mind. In fact, I have the Eversense 365 day CGM and I have 1 âDay 1â event all year and I donât even give my diabetes a thought the rest of the year removing all that aforementioned stress. In addition, I eat a healthy diet and exercise daily but I also do not live my life around my disease. I enjoy my drinks and my lifestyle has changed very little to my pre T1D diagnosis and with tech getting better every year whatâs not to like? Heck, my CGM will soon not even require any onbody transmitter- Yahoo!!!
Is that a pump that you have?? I have Libre 3 but I cannot forget my diabetes dailyâŚEversense is pump? What is it like?
