Hello again
@Sparkles15597,
Yes, you really have got a full array of challenges - many of which almost overwhelm me in thinking how I would manage those.
My present medical state started from Pancreatic Cancer in Oct 2019 and my Oncologist has been the only Health Care Professional (out of 6 Consultants) to claim that she has the lead overview on my overall condition. We've never met and now only have 6 monthly phone calls - so the overview is pretty shallow if I'm truthful; but the claim was made with what felt like sincerity. So I ought to be grateful there is somone claiming to care apart from me.
Is there any merit in emailing your GP and ask who your GP thinks has the overview for yourself
@Sparkles15597? You could quote the conundrum about
"The doctors were expecting hospital to return bloods and hospital are expecting docs" or try to establish if part of your current condition is simply due to too many meds and potentially too much contradiction within the cocktail?
Regarding your early question about reducing Tresiba by 10 units (I presume from 70 units to 60?) - do you have CGM such as Libre to help you with the management of your very longstanding T1 diagnosis? At first I sort of assumed you must have CGM, but I know (from personal experience with a longstanding T1 cousin) that sometiimes this huge aid to BG management doesn't get into the vocabulary of longstanding T1s
. If you do have CGM do your daily graphs over the last 7 days demonstrate that your 70 Tresiba units are clearly too much? I can't help returning to a question in my mind are you managing your T1 with a good understanding of how this particular basal insulin is best employed?
In asking this question I can see that the blatant long lasting profile of Tresiba's 40+ hrs can be a huge help to your current overall medley of ailments. With limited mobility Tresiba could provide that extra bit of BG stability long term. Equally the reverse could be true, with other ailments possibly behaving irregularly and your basal might be better if used on a more flexible basis. CGM would at least help you to get a better sense of cause and effect.
My perspective is that keeping my BG in a decent or at least acceptable range is a pre-requisite for reducing my vulnerability to further TIAs - or anything else.
70, or even 60 units of Tresiba implies a high degree of insulin resistance. I'm acutely aware that we are all different and thus one size does not fit all. But even 60 units once daily feels a lot and the principle of "Small is Beautiful" works for medications. Even though it originated in economic theory in the 1950s, it feels valid today across so many large and difficult things that need managing. Injecting 60 units at one shot creates an environment for insulin dosing to go wrong - too shallow, or into sites that are already damaged, etc, etc. If that basal insulin is consequently underperforming then BG management becomes a lottery.
I ought to ask what bolus insulin do you take and in what sort of dose sizes?
From all of this I should make sure you understand I am in no way medically qualified. I was a chartered Civil and Structural Engineer and I try to deal with my health somewhat dispassionately and as if it was an Engineering problem. In practice it all seems more like an Art rather than a Science, sometimes juggling different variables in a slightly random fashion hoping the treatments don't clash. But then some individual colour pallettes seem great to some people and a clash to others!
