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Type 1 - Horrendous weight loss: why?

ausguy997

Newbie
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4
Hi all,

Posting this in regards to my father, whom we are all worried about.

Has been Type 1 since he was 21, and is pretty poorly managed in his old age, as he is 62 now. An endo once labelled him the worst-managed diabetic he had ever seen in over 25 years of his career. And that was when he was 'healthy looking'. Dad smokes like a chimney and has a sweet tooth, etc. I'd hate to see his HbA1c. Currently, he lies about going to the doctor and claims they say he's OK but just that he needs to stop smoking and start exercising. Which is complete BS because he is already skin and bones, and looks ghostly.

When he and my mother were married, she took good care of him, and ensured (through nagging) that he looked after himself. He looked great and weighed around 79kg, despite his poor medication and lifestyle regime, and he would hypo probably 6 - 10 times a year. Once a month I'd say. Since my parents' divorce however, dad has been taking significantly less care of himself and it shows in a HUGE way.

He's now weighing in at a grotesquely sickly 61kg (at 168cm). And he looks like a prisoner of war. He is literal skin and bones. He WAS hypoing more than ever, once a week and sometimes even nightly, until his new partner threatened to leave unless he sorted himself out, so I assume he's now just keeping his sugar purposely high.

I've been living with him for 6 months, and I can see his daily habits. The hypos have stopped. He eats a lot of sugar, though he medicates. He claims, that he can eat whatever he likes so long as he medicates for it, starting a chain reaction of sugar spikes and drops and sugar spikes to bring up his blood sugar etc. It's a nightmare. But only he can fix himself, we've all tried, and we know that. He is probably somewhat delusional, maybe even brain damaged from all the hypos, but it is what it is. Can't choose your family, right?!

Meanwhile, he continues to drink full strength Coke and eat donuts, cake and raisin toasts etc etc. It's enough to make you cringe. He literally lives on sugary foods, but just eats a lot less of them, so his calories would be, I imagine, quite low. He'll eat sandwiches for lunch and probably pasta for dinner, with nothing but junk in between, maybe the odd banana.

His sugars are constantly high when testing. Anywhere from 13 - 25. I convinced him to come get blood tested with me (I'm on TRT due to a damaged pituitary) so I will have his entire hormone panel including HbA1c soon. He still avoids the doctor, as I imagine they'd want to admit him to hospital. I'm amazed he's still standing, and doing manual labour every day. I imagine he's in a lot more pain and discomfort than he leads on, but he's too proud to admit it. He's often very tired, grumpy, and sometimes not with it mentally.

What I wonder most however, is WHY the severe sudden weight loss has occurred? He's been poorly managed for most of his life, but let's say even for the last 10 years, he physically LOOKED well, but only as recently as the last 2 or so has he turned into a matchstick.

The type of severe weight loss he has, apparently, is reminiscent of an undiagnosed Type 1 with severe ketosis from a lack of insulin. However, he still medicates and I've seen him with my own eyes, and insulin is anabolic.

My understanding of hormones from my own treatment would perhaps suggest that, he may have severely low testosterone (which is also anabolic) and this has caused insulin resistance, which, combined with his sugary diet has put his body into a wildly catabolic state where even though he is medicating, the insulin is not actually working as it should.

Thoughts? Suggestions?

I'm going to drag him to an endo by the balls when these blood tests come back. But I'm expecting both a state of ketosis and sugar through the roof, and (probably) insanely low testosterone, meaning he would likely need TRT too - which HELPS balance blood sugar and insulin of all types.

There's no cleaning up his diet or regime. He's too stuck in his ways, and only HE can change it. I just hate to see him look so damned awful.
 
Speak of the devil, I just received the results. He has moderate chronic kidney disease. EGFR 56 and the other markers way in the red. Weight loss, and all the other symptoms he has.

Testosterone is fine. Great even for his age. 560ng/dl. It's bound up though, way too high SHBG.

9% HBa1.

75 mmol.

For example of his diet, his glucose during this test was 24.2!
 
Hi so sorry to read of your dad's declining health regarding his diabetes, also 62 is definitely not classed as old !!
Type 1's can eat 'sugary foods' in one form or another, but if he not taking his Insulin or not enough this could be why he is losing weight and having high number's, he will know this. You could tell him you are so worried about him, as you clearly are and tell him if he doesn't see someone he could end up in hospital in real trouble.
What Insulin's does he take, does he carb count for his intake of food and Insulin to take ?
Losing weight unexpectedly is a cause for concern and needs medical advice, it may not even be related to diabetes.
I do hope you dad will get help and support, but sometimes people just wont listen, he could be having diabetes burnout.
Take care and please let us know how your dad get's on, i wish him well.
 
Speak of the devil, I just received the results. He has moderate chronic kidney disease. EGFR 56 and the other markers way in the red. Weight loss, and all the other symptoms he has.

Testosterone is fine. Great even for his age. 560ng/dl. It's bound up though, way too high SHBG.

9% HBa1.

75 mmol.

For example of his diet, his glucose during this test was 24.2!

Just seen this, what did your dad say about the test results, especially the kidney problem ?
 
Gosh I really feel for you it must be a huge worry, it's quite obvious from what your saying that he's abusing his condition and not taking care of himself, running high and not taking insulin means he's not utilising the glucose and the body is resorting burning through fat stores, which includes the protective fat around organs which can cause damage. It's a dangerous state for the body to be in.

Getting to the bottom of this means your dad needs to open up and admit he's got a problem, unfortunately regardless of how ever much you love him or care for him nothing will change until he can see this is a problem, then you can seek help and get support, but until then nothing will change.

Do you ever have heart to hearts with him or talk about his emotions ?
 
Your father should be able to avoid hypos without running his sugars so high. Perhaps there is a carbohydrate-counting course that he could/would attend to help him judge the right doses of insulin to avoid both hypos and such very high blood glucose levels. It might be helpful if you could get his partner on board with this - if she doesn't like hypos, she wouldn't like a hospital admission for DKA. There is some information about carb-counting here (assuming you're in Australia):- https://static.diabetesaustralia.co...alia/22271a4e-3b97-4511-9ef0-e2e187519a88.pdf
 
Sorry to hear of your experience with your father @ausguy997.
Weight loss has many causes, only one of which is poorly controlled diabetes.
He really needs to see a general physician who can assess him thoroughly, looking at his diabetes but beyond that as well to include tests such as an basic Chest Xray etc.
Of course your father has the right to refuse.
The other thing that you mention is about his possible mental state. He may need assessment of how well he is able to decide and it is best if as soon as possible and if he is able to, to ensure he makes some form of advanced care directive, or whatever it is called in your location. A statement of who is to speak and decide for him if he should not be in a fit state to make the decision himself and what operations or other procedures he would agree to or not.
One has to hope for the best but plan for the worst.
 
Thanks for the replies all!

He really does have diabo burnout and definitely isn't in a good mental space. But it's such a negative feedback loop where, his current state probably makes him feel even worse and helpless etc, and he feels too far gone I suspect. He just doesn't want to help himself, or thinks it's too much hard work. I do feel for him. He's lived with this for 40 years and it isn't easy, but as I always say, it could always be so much worse. There are kids dying of cancer out there who never even get a shot at life, and all he has to do is monitor his blood sugar?! Sure is frustrating.

I try to talk to him man to man, but oftentimes he just agrees and disregards everything later, or just doesn't want to open up.

At the very least, I said we need to get his diet in order. But I could use some ideas for good carbs and so forth so I have some reading to do. I follow a body builder diet so it probably isn't so suitable for him. I suggested more of a Mediterranean and he is Mediterranean, so you'd think it wouldn't be too hard!!!!

Yes I am in Australia, btw! Good catch.

He's currently in a carb counting routine, but it just doesn't work. His sugars still run high, and I can't always see what he eats during the day, so he may be sneaking in dirty snacks at lunch time. It's very consistent though. In a 1 week period I'd almost surmise that regardless of what he ate, he would never have a stable in-range sugar level, due to his constantly erratic sugars and spikes. It would either be through the roof or on the verge of a low. And he can go LOW, too.

The sheer volume of hypo's he has had, means his already low tolerance level has been adapted by his body, and he can still function (well, sort of. Very violently and vacantly) at stupidly low levels. He'd been tested by an ambo at something like 1 once, awake and 'present'. And they were dumbfounded at how he wasn't out of it.

The guy would be a case study for the ages, I tell ya! He's like a freshly diagnosed diabo. It would take weeks in a hospital, I think, to properly stabilise him and his sugars. The thing is, he's done all this stabilisation before. And knows how to do it (manage his diabo). There was a time, for decades, he did somewhat take care of himself. At least 'enough' care. He just doesn't care anymore, at least, now more than ever before.

As mentioned, he's now in this carb counting routine he got from some course that his partner suggested (her heart was in the right place) but... he's done this. He's been diabo for 40 years. He KNOWS how and what to eat and medicate for. He just doesn't care to. Yet he tries to make out like he's only now just teaching himself how to calculate carbs, and he weighs everything (again I see him do it, and he medicates) and he still gets it wrong, or the insulin just doesn't work. I'm unsure what he takes, to be honest. But he switched insulins about 2 years ago, to lessen the hypo's, and come to think of it that's when the weight started coming off, but sure enough the hypo's did lessen.

The most worrying part is the weight loss even though he DOES medicate. I think there's definitely more to it, but the kidney disease laundry list of symptoms is everything he has, so it's somewhere to start I guess. There could be way more going on under the surface I suppose.

It doesn't phase him. He just shrugs and says "oh yeah, I know my kidneys are bad, they told me that last time, what can you do?"...
 
Hi, this is a hard time for me, as last year I was in ICT with pneumonia and sepsis and my 3 children were told I wasn't going to make it, or if I did i would have kidney failure and brain damage. I survived in tact, I have had type 1 for 30 years, even having my daughter was touch and go, HELLP syndrome I also have many other medical conditions, a few auto immune ones. Life ain't easy at times and sometimes I don't know how I am here, but thankfully I am and I an so lucky, but I have fight in me, as I will not let this condition or associated conditions, bring me down and engulf me.
I am not looking for any sympathy, far from it. Ex husband left 30 years ago, so I had two children to bring up, then I was diagnosed with type 1 hundreds of miles away from home, years later, had an eye operation, also severe complications set into a broken wrist and more. Life at times is not kind, but inner strength pulls me through, we have to do it, or it will eat us up.
Diabetes is like riding a tiger, you try to steer it away from harm, but if you let go, it can ravage you.
So please show this to your father, maybe it will help and he will find some inner strength.
Best wishes.
ps I am a year younger than you dad
 
Just a thought, but I wonder if he has issues with injection sites? If you overuse a site you can get lipohypertrophy there, and the insulin isn't absorbed properly. I didn't realise this while I lived in Australia, but the diabetic nurses in New Zealand are all over this issue, and it can make a big difference. (And I've been diabetic for 49 years so I'm not exactly a novice.)

But honestly, it sounds like his major issue could be depression. It's very hard to be motivated to look after yourself properly in this case.

How are your finances? Could you afford to fund him for the freestyle libre for a while, just to act as motivation? And if you're trying to get your diabetes right, the first thing to do is get the basal right. I wonder if his clinic has recently helped him to check whether he's on the correct basal dose....
 
Hi, this is a hard time for me, as last year I was in ICT with pneumonia and sepsis and my 3 children were told I wasn't going to make it, or if I did i would have kidney failure and brain damage. I survived in tact, I have had type 1 for 30 years, even having my daughter was touch and go, HELLP syndrome I also have many other medical conditions, a few auto immune ones. Life ain't easy at times and sometimes I don't know how I am here, but thankfully I am and I an so lucky, but I have fight in me, as I will not let this condition or associated conditions, bring me down and engulf me.
I am not looking for any sympathy, far from it. Ex husband left 30 years ago, so I had two children to bring up, then I was diagnosed with type 1 hundreds of miles away from home, years later, had an eye operation, also severe complications set into a broken wrist and more. Life at times is not kind, but inner strength pulls me through, we have to do it, or it will eat us up.
Diabetes is like riding a tiger, you try to steer it away from harm, but if you let go, it can ravage you.
So please show this to your father, maybe it will help and he will find some inner strength.
Best wishes.
ps I am a year younger than you dad
Wow you are a total queen. My hat goes off to you miss!
He used to have fight in him. Now he's very submissive.

As far as I know he had the Freestyle and they gave it to him for free, they were that worried - but only for a few months. I believe (this was before I was living with him) that their ultimatum was the Freestyle or hospital admission, so of course he chose the former. HOWEVER, finger pricks have never really been his issue, so it was a pointless exercise, really. He just cleaned his act up a little, and started looking a bit better, then they yanked the Freestyle's away, and he fell (or rather jumped) off the wagon again. There's quite a lack of compassion and understanding in the diabetic medicine world, from quite a lot of what I've seen.

If there's one thing that sickens me about diabetes more than anything. It's that: it's a business. To think that there is still, in 2019, no simple implanted 24/7 blood monitoring device and / or combined automated insulin delivery system is absolutely laughable. But there's no vested interest to do so. Because the consumables are such a billion dollar industry. And most of the pump and other measurement systems are slowly drip fed to consumers in such a way that they are more cost and trouble than they are often worth. You can't tell me we could put a man on the moon in the 60's, and still be this horrendously ungroundbreaking in diabetic medicine. I just don't buy it. Money is no issue, thankfully, however I'll end that rant here.

Injection sites is another very interesting suggestion.

Weight loss reversal is the main goal and hopefully a visit to an expert soon enough :)
 
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