In the past 45 days my T1 diabetes has changed dramatically. I won't relate a lot of trivia, but insulin intake has gone up significantly, and for the first time in 52 years, I am totally unable to find any kind of even T1 ground. (I have been on a pump for 10 years, and a CGM for 3 or so, with A1Cs of 5.1- 5.8.) I have run moderate ketones several times during this period of time; never have I had more than a trace in all my years of D.
This is serious. I am totally depressed, seriously depressed as this has taken over everything. I am a mess, and have never been so down about being diabetic in my life..
My endo is no help whatsoever. I have asked my PCP (he is a gem) for a referral to somewhere like Joslin or Mayo for a full review of my D.
Has anyone ever done this? What happened? Was it helpful? It is sort of a last ditch effort for me to find someone to help, because, unlike most of my D years, I really need it now.
I know the Joslin does a full work-up and trouble shoot as part of the DOIT program. You also get a lot of training/classes which you may not want but you'll get a senior endo and CDEs working on your situation.
They run the programs regularly and although there is often a wait for space, I think they can be worth it.
I hope things start getting better for you soon. In fact, I hope that you wake up tomorrow and be back at baseline.
I have been to Mayo, my PPO insurance does not require a referral and they did not ask for one. It was easy too get a appointment, I spent three days and they met with me for a revue at the end, many doctors including the head of the department. You can stay at hotels that are connected to the clinic by tunnels so during the winter there is no need to even go out side.
It was worth the trip...I received the answers I was looking for...
Perhaps you are fighting against a pump malfunction? I had a pen malfunction two months ago and it took quite a while to figure that out. I wish you all the best.
I traveled to the Mayo clinic in Arizona for gastro-intestinal problems related to diabetes. The whole experience that I had there was exceptional. It was a "one-stop shop" kind of deal. Absolutely no run-around. Everything is integrated and doctors consult with one another over your case. I was never rushed through any of the exams or interviews.
The whole environment and buildings were soothing. One waiting area featured a volunteer playing some live tasteful piano that mingled with the sound of falling water from an indoor fountain. The walls featured colorful works of art. In short, it was comprehensive and caring. I would go back if I faced an overwhelming scenario that you describe.
I wish you luck with this. Diabetes can be such a struggle.
I haven't done that but I think you should if your endo is useless. It can help to get some new input.
What exactly is causing this do you think? I remember you saying that you were backing off insulin a bit and tight control due to lows. Is that still what you're doing?
I would also still ask the pump manufacturer if it could be something there or with the infusion sets since it is happening at the same intervals. If it isn't the pump etc. is there anything else that you're doing at that time that is different?
I'm sorry you're so depressed, and I hope you resolve this and start to feel better asap :) Hang in there!
IF you aren't near Joslin, I know that Gary Scheiner and Ginger Vieira and I think maybe TCOYD and some other organizations may offer online support or perhaps "coaching" services? I love Gary although I haven't friended him but am pals w/ Ginger on facebook and have seen several other buddies (FBD is weird but I like it too...) who are working with her in the coaching capacity who have reported big improvements and that she's helped them. The downside is that, from their books, I think that they are big loggers. I hate logging.
I know that you have gotten a lot of advice to focus on your diabetes. That somehow after all the years you have lost your mojo and can't control it. But perhaps it is more than that. Perhaps something else is wrong. Maybe you have an infection or an inflammation. Maybe a diabetologist or a team like at Joslin can track it down. But maybe not, maybe you will come away with just a refresher on carb counting.
So I would recommend just poking around yourself. See a dentist/periodontist, maybe you have a lurking problem. Ask your PCP for a range of tests to identify infections/inflammations like white blood cell count and CRP. And start documenting stuff, what you eat, when and how you dose insulin. Any PCP can check you for gastroparesis using an R-R interval study which detects damage to the vagus nerve. All this stuff you can do before flying to Boston.
And most of all, don't for a minute thing this is somehow your fault. You have had admirable control and you know how to manage your diabetes. But something has thrown a wrench in the works.
Brian, the part that scares me is "a wrench in the works." I am very proactive about my healthcare-eyes, feet, teeth. I go to the dentist next week (I go quarterly.) I got my flu shot yesterday! And I have become a serious logger over the last 45 days-CGM and meter readings, bolus and corrections, carbs and the food I eat. It is a pain, but it helps me "see" things.
But you made me think. I guess I just want to go somewhere and start over. I am just tired of being diabetic, but I have to fight on--or give up, which I have fully considered. Maybe a thorough workover, some classes, etc. are what I need.
In your situation I would consult the local pump trainer or the manufacturer. I would explain that I need a spare pump to verify that the current pump is working as expected. With your expertise you have good reason to claim that something is wrong here. Perhaps they can even check the status codes of the pump via telephone. Tell them about all of your effords and make a statement that you are about to loose all trust in their medical devices.
As it was explained to me physiologically every 7 years or so, we are in VERY different places in our lives, literally. Radically different things on almost every conceivable level. Hormones, brain chemistry, physically... how we process things, how our bodies react is very different in that time frame.
Look, you are NOT a failure... you've done everything you can think of, done everything you know of, and are not finding the right answers. Letting someone else take a look will do no harm....
My experience with Joslin was unfortunately unhelpful. When I visited they were not geared at all for experienced folks like you or I. That said, if there was an eye, kidney, gangrene, impotence issue, I suspect they might have had somebody to find. But simply looking for a tune up, trying to analyze and crush bizarre events, I'd call ahead and ask careful questions before I visited anybody.
Geared for the trauma of new diagnosis, will be a different thing than what you need. Make sure they have the tools, and geared toward your needs. You don't need the dopey dietitians "this is a portion" lecture...
But yes, I have had severe changes, and dangerous problems which nobody could figure out. Mine tuned out to be the Animal NPH kept kicking me in the tenders but, nobody figured it out until I did, having fired two md's and tripped across a comment by an RN (who was OUTSTANDING) and gave me a hint...
Basal is up 30% from 8/19, as is my bolus totals, without additional carbs. I am correcting 3-4 times daily. I was taking an average (basal, bolus corrections combined) of 112-14 units per day. Now I am at 18-28, averaging around 22 per day. It seems like very little, but I am very insulin sensitive.
I understand I am not a failure--that is not the issue. The issue is that when my BG readings are high and out of whack for continuing periods of time, I stress completely. I focus all my efforts on solving the problem. My life gets off track, I get down, I get tired of the struggle.
Also, I did a bunch of research yesterday and truly discovered that what you say seems true--no one could tell me what they would do to help me, and kept referring to basic training classes. I asked what kind of classes they might have for a long timer, and they were at a loss for the answer. That made me realize this may not be the thing to do, so I am reconsidering.
However, I haven't been out of my house in three days, working hard to get my BG readings to calm down....
No, I am not stuck. I have really tried to make everything--food, exercise, etc.--the same for those days, so I can chart, bolus test, etc. and get some new ideas. I have also been researching a lot, rereading Pumping Insulin--basically focusing on fixing what seems to be broken.
I also contacted a woman I have worked with for my 50 year Joslin medal and asked her if she knew someone who could help me understand what can be done for long timers...
In my experience, a change like this has a cause that an endo probably is not the guy to fix. When my doses went up by 100% (doubling) and still it felt like I was chasing highs with corrections all the time, and having ketones, it wasn't that I was managing my diabetes wrong. It was that I had Lyme disease. Of course disentangling me feeling crappy because of Lyme disease, vs feeling crappy because my bg's were sky high, was a bit of a confusing factor for me (or any T1 I would think). Any kind of general systemic infection can cause these symptoms.
