She hasn’t noticed anything like tooth ache, sinus, uti…but as you said, it could be any of that or some other infection. At the time of her lab work they don’t show anything out of the ordinary. It could be stress too, so there is that.
Wife got a call from a supplier of Dexcom and with DME insurance covering part of it she would be out of pocket $200 a month. She is still waiting to hear what the price is from another place if they use her prescription insurance. Currently she pays $80 a month for the Libre sensors so really going up $120 a month isn’t the end of the world.
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Got GAD65 test back, 19.36 nmol/L way above range. Hope to hear from her doc tomorrow to find out what it all means.
As long as she doesn’t eat anything her BS isn’t bad. All over the place once she has a meal. Averaging around 220 for a 24 period over the last 5 days.
Thank you for sharing this update. I’m not familiar with GAD. There’s no need to get off track and go into that here as the important thing is that you be, and you’ll be meeting with doctor tomorrow to discuss next steps.
We always want our results to fall in the normal range, but this may give some helpful information about what’s going on.
I do an occasional basal rate check - fasting for various periods of time to see how my numbers go. Sometimes I too find “I’m fine until I eat something” - highly frustrating of course because well, we can’t starve ourselves. That indicates either I am miscounting my carbs or (more likely) I need to change my carb ratio. Just sharing that that happens now and then - you and your wife are not alone, and hopefully her results will start you on developing a plan that works for her.
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Her doctor called awhile ago and confirmed she is T1D and is producing very little to no insulin and positive for autoimmuneatibodies related to her diabetes. For now she is going to change her ICR to 1:10 and see if that helps. He is also having his nurse get started on getting with her insurance for the Tandem pump. Still waiting on the second place to see what the Dexcom will cost.
@wadawabbit Thanks for the post and helping her to stay positive. She broke down and cried Friday evening for awhile.
I’m always glad to share and try to help people on their journey. Keep us posted on how the adjustments go - it may take a few days for things to settle in but I hope you see some improvements soon. Hopefully the pump will make a world of difference - let us know how that comes along!
Totally understandable. I can only imagine what it’s been like, dealing with a misdiagnosis for so long, and now trying to learn how to be her own pancreas. Hopefully she can find some comfort in at least now knowing what’s wrong, and knowing there are lots of others who are right there with her.
It occurred to me that I don’t think we’ve talked about the “honeymoon” stage, which could be another reason for some of those unexplained numbers. Did your doctor or DNE mention anything about that to you?
She’s relieved at least knowing for sure what is going on.
He didn’t mention it and I didn’t think to have her ask about the honeymoon stage.
Hi again. When I was starting on my very first pump my doctor recommended I eat the same thing for breakfast, lunch and dinner as we tried to set up my carb ratio - it helped decrease other variables to consider as I was starting off. It was boring as anything but I only had to do it for a few days - you could ask your doctor if that would help, and once things are set she can enjoy variety again. Just a thought.
I’m late to the convo, but first off - you are awesome!!! I’m 46 and have had T1 33 + years and am very healthy. Currently on the Tslim dexcomm combo. My first thought when reading all this and seeing how stressed you both are: WHILE HIGH BS ARE NOT IDEAL - PERIODS OF TIME LIKE YOU ARE EXPERIENCING NOW ARE NOT DESTROYING HER BODY! Yes, it’s not good and she feels horrible, but take away that added stress right now and just focus on what needs to be discovered and fixed. This isn’t destroying her future.
Three other parts to my reply:
First part: Your wife is obviously female but nobody is talking about how the calendar affects a T1’s life! My doses and control are very different the days leading up to my period, during, and drastically different right after. Every woman is different and unfortunately, she will need to be her own experiment. I have also been warned by my Diabetic specialist that menopause is hellacious on BS much like puberty is and that I’m approaching it. (And this may be way too much info, but remember that sex is exercise!)
Second: This is what I tell new parents… Diabetes is NOT an exact science and things that work can change on you. Your wife will soon be the expert on her body and her diabetes. Once you have established what regime works for her, don’t freak out about out of range numbers. Treat them and learn from them. Your A1C is the number that tells you how you are doing overall and you can spike a 350 and still have a good A1C (just don’t stay at 350). You already have the mind set I tell people to have - don’t be afraid of firing a doctor, even a fabulous one. But do find a diabetic specialist, not just an endo.
Third: You can and will get to a point where you can be “normal”. I travel, play tennis, have the occasional drink (I’m raising teenage daughters now!) and even eat sweets. Spontaneity can be hard especially at first, but you both will soon know all the contingencies your life will need and it will become second nature. I have been told by my specialist that my diabetes will not kill me and that I could easily live to a nice, old age. Hear that and focus on that and not the fear.
Lastly (sorry I thought I would just have 3 parts!), T1’s can get burn out; I don’t know very many non T1’s who live decades on a controlled diet like Weight Watchers. Stay supportive of your wife and don’t ever confuse bad control as bad behavior. We are so often judged by our control, numbers, weight… and we too easily begin to feel guilty and shamed about these things. Your wife will need to be reminded that bad numbers don’t mean she was bad; they just mean that something didn’t work right.
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You’ve got enough on your plate already, so just know that the “honeymoon” is another possible explanation for when you get some random BG number that makes no sense. Search the site for threads on it whenever you feel like adding a to your rapidly-expanding knowledge of all things T1D, or forget I ever mentioned it, whichever will make you happier in the moment. 
Been crazy busy lately…
Wife had a return appointment yesterday (wasn’t scheduled until the end of the month originally) but insurance wanted her to see the Endo again before moving forward with the pump. She’s still waiting on her Dexcom to ship (as they keep requesting more info from the Doc). Insurance is driving us nuts and all the crap she has to go through.
He changed her ICR (lowered) again yesterday as well as her sliding scale. Lowered her Toujeo (lowered) as well. She’s had some 40-50’s BG’s in the middle of the night off and on the last few weeks. For the most part her numbers are still high. She did have good numbers for her over the weekend and yesterday until she went to bed, climbed to 345 overnight.
Her Endo also talked about what he wanted her to use setting wise once she gets her Tandem and Dexcom.
Speaking of dumb insurance…She’s out of needles and they won’t approve her refill from her current Endo because they are going by the original scrip from her PCP back a year ago based on one shot a day and not the 5 she’s taking now.
My insurance has accommodated changes from my doctor’s although sometimes they have to do an afitional authorization. Is it the insurance or the pharmacy that is giving you the issue?
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Insurance is the issue from what we can tell.
We’ve been there. I’m sorry. Just keep having your doctor send the current script — in theory, that should take care of it.
I say “in theory,” because I was reduced to tears myself once after being in phone tree hell for a month, trying to get more insulin when it was “too soon” based on the original script. Hello! She’s not selling it. She’s using it, and if she needs more, then she needs more. Grrr.
In theory they should take care of it…we shall see.
Oh and she had an eye exam last week. Her right eye vision has gotten worse over the last year. She also has retinopathy more so in her right eye than her left. Her optometrist wants her to have that checked every 3 months which insurance will cover.
Hu Brian @aftrshok , if your wife has suspected retinopathy, she should really have her eyes checked by an ophthalmologist. Although an optometrist is trained to recognize retinopathy, any treatment [in most jurisdictions] must be performed by an ophthalmologist.
Maybe I used the wrong term for her eye guy…LOL
He’s an Optometry Doctor, not sure if that’s the same as an optometrist?? Show’s how much I know about eye people.
Here’s a link that might help. Optometrists measure and for for glasses and contacts, and may diagnose some eye conditions. Ophthalmologists area medical doctors who diagnose and treat diseases of the eye
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