Hello Garry and welcome,
Hi All,
I'm here because my Dad has Type 1 diabetes, as a result his pancreas being removed 10 years ago.
If your Dad has no pancreas then strictly he is Type 3c - a Type that probably wasn't recognised 10 years ago. Total or even partial removal of the pancreas puts him into the T3c category. He was given the T1 diagnosis because T3c barely existed, it flags up on his medical records that he is insulin dependent, which matters in an emergency scenario and it should have placed him under the direct care of a hospital team, ie an Endocrinologist and Diabetes Specialist Nurse (DSN) - once he was fully discharged from the surgical team who removed his pancreas.
Does he have Creon capsules with all that he eats? If so is he taking these? No Creon means poor digestion, so carbohydrates not digesting into blood glucose and thus excess insulin for the actual glucose in his blood. Creon, in medical parlance, is a Pancreatic Enzyme Replacement Therapy (PERT) for the missing digestive enzymes that are solely made by rhe pancreas. Google "what does a Pancreas do" to appreciate how vital this small organ is, what vital hormones and vitamins are no longer available to your Dad and thus why the T1 label doesn't truly cover all his unusual needs.
He has managed his diabetes quite well, until the last year or so.
Perhaps because he has managed well he drifted out of the annual hospital reviews (or maybe they just didn't happen that way 10 years ago for his geographical region) but they are something that can be reintroduced with a little persistence on his, your Mum's or even your part.
More below, but a little more information about your Dad would help us offer better support. I deduce he is over 75; apart from the Diabetes does he have any other serious medical conditions? Would your Dad (or Mum) join this forum himself (herself) and be able to absorb the suggestions that might emerge? What treatment regime is he on? I guess he is on Multiple Daily Injections (MDI) of both a basal (slow, long-lasting) insulin once or twice daily and bosul (faster, shorter lasting) insulin taken with every meal and for corrections when needed. But it would help to have that confirmed and exactly which insulins for both basal and bolus.
He is struggling with Hypos and managing his diet.
Hypos are caused by too much insulin. After 10 years things change: one's ratios for carbs to insulin and for corrections are not a constant for life. Also external factors such as summer to winter affects the body's natural resistance to insulin - but would normally cause highs, not lows so not appropriate here. There are many, many other factors that affect one's BG.
First action is gradually, not dramatically, reduce insulin doses, starting with the basal. There is a broad principle of getting the basal right first, then make adjustments to bolus; otherwise the bolus is constantly chasing a suspect background basal. But, is your Dad still carb counting? Or perhaps drifted into assuming his bolus requirements and needs to return to the more rigorous process he would have learnt after his original diagnosis? Is there a possibility that complacency has set in? It's easy to do.
Does your Dad wear a Continuous Glucose Monitor (CGM) such as the Abbott Freestyle Libre 2. Maybe this leap in technology to assist diabetes management has passed him by. He is entitled to it, assuming he would, or is able to, make use of this - reducing finger pricking and getting alarms to tell him his BG is falling, BEFORE going hypo.
Me, my Mum and sister are struggling with getting support from GP
So, without maligning GPs at large, it is rare for GPs, or their Practice nurses, to understand the specialised support needed for any insulin dependent diabetics. This is outside of mormal General Practice, particularly for those diabetics without a pancreas. T1s are some 10% of the total diabetic population and T3cs with no pancreas a tiny proportion of that 10%. Your Dad needs to either get an Urgent referral from his GP to a Hospital based Diabetes Team OR (if getting a GP appointment is difficult as I find locally here) then he or your Mum should phone the Hospital Diabetes Team, leave a message if necessary and seek Urgent help for him; explain that he is currently "adrift" and struggling. If all else fails present himself at A&E.
and we're worried about Dad. My sister and I live miles away from our parents, so we can't pop in daily.
I get that, both my wife and I had that challenge for both sets of parents (different ends of the country) and my mother-in-law was reluctant to share her difficulties with either of her daughters. How you approach this will depend on how much your Dad will (or can) help himself; I had to go to my Dad's for a few days and micro-manage the changes for both him and subsequently their care (25 years ago, when the NHS was less overloaded and less inclined to force patients and next of kin to use digital processes to get necessary support!).
You and your Dad are not alone, now you've found this forum. We are a friendly bunch and there is centuries of accumulated experience between us. There is also a help telephone number at the top of this screen for Diabetes UK, that anyone can reach out to during working hours.
