Night sweats and weight loss.

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D1Daughter

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My father developed T1D 8 years ago in his early 60s. Doctors never found what triggered it. For the past couple of years he's had worsening night sweats and weight loss. Doctors have been testing for cancers including lymphoma, but is this actually just poor diabetes management? He's always prided himself on being "good at being diabetic", obsessed with keeping his blood sugar level, avoiding carbs so he doesn't have to take too much unsulin. He's not forthcoming with doctors; he avoids them, and then only answers the questions they ask and doesn't volunteer more information. He's now having regular low blood sugar, falling asleep throughout the day and says he feels fluey some days. He's about to turn 70. Could he just simply need to eat more and inject more than he used to? He'd never come on here and ask these questions for himself, and my mum is convinced he's dying. Any advice or similar experiences gratefully received. Thank you xx
 
Welcome @D1Daughter 🙂 Firstly, has your dad had his thyroid checked? That can sometimes cause sweating and weight loss, and people with Type 1 are more at risk of auto-immune thyroid conditions. Secondly, has he had a recent coeliac screen (again, Type 1s are more at risk of this). Has Addisons been ruled out?

Does he have a Libre sensor? My first thought when reading your post is that he’s going low overnight, causing sweating. You mention he’s now having regular low blood sugar. This could be because he’s low overnight so he’s losing his warning signs of hypos. This is potentially dangerous. Lows can cause people to feel fluey. The weight loss could simply be because he’s not eating enough. Have you or your mum tried using an app to record his food and get an idea of his calorie intake?

It sounds like your dad might be being unnecessarily strict. Blood sugar isn’t supposed to stay level. It’s supposed to move up and down within a range. Also, Type 1s can eat a pretty normal diet, including bread, cereal, rice, potatoes, pasta, fruit, desserts, etc, as long as we use our insulin appropriately. Your dad doesn’t need to cut out all carbs or eat an extreme diet to control it.

Finally, if your dad is limiting his diet, he might be suffering from anaemia or vitamin deficiencies. If it were me, I’d make a list of things to rule out, get further investigations done, and then you can hopefully narrow down the cause.
 
Inka said:
Welcome @D1Daughter 🙂 Firstly, has your dad had his thyroid checked? That can sometimes cause sweating and weight loss, and people with Type 1 are more at risk of auto-immune thyroid conditions. Secondly, has he had a recent coeliac screen (again, Type 1s are more at risk of this). Has Addisons been ruled out?

Does he have a Libre sensor? My first thought when reading your post is that he’s going low overnight, causing sweating. You mention he’s now having regular low blood sugar. This could be because he’s low overnight so he’s losing his warning signs of hypos. This is potentially dangerous. Lows can cause people to feel fluey. The weight loss could simply be because he’s not eating enough. Have you or your mum tried using an app to record his food and get an idea of his calorie intake?

It sounds like your dad might be being unnecessarily strict. Blood sugar isn’t supposed to stay level. It’s supposed to move up and down within a range. Also, Type 1s can eat a pretty normal diet, including bread, cereal, rice, potatoes, pasta, fruit, desserts, etc, as long as we use our insulin appropriately. Your dad doesn’t need to cut out all carbs or eat an extreme diet to control it.

Finally, if your dad is limiting his diet, he might be suffering from anaemia or vitamin deficiencies. If it were me, I’d make a list of things to rule out, get further investigations done, and then you can hopefully narrow down the cause.
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Thank you so much for your reply. I believe thyroid issues have been ruled out but I don't think coeliac or Addisons have been consider. He also has Crohns disease which could disguise some of the symptoms of coeliac disease. Plus would add to a vitamin deficiency.

He just recently got a libre sensor, and it seems to have made him even more obsessive about staying within the 'perfect' narrow range all the time.

Lots of really useful things for us to try/to ask his doctor, so thank you very much I really appreciate it!
 
The Crohn’s might explain the weight loss then. Is it something he’s mentioned to his specialist?
Yes, unfortunately the Libre can obsess some people in a bad way. It should be a useful tool not a tyrant. The target for the Libre is 70%+ of the time between 3.9 and 10 - that counts as very good control, so if he’s achieving that he’s doing well.

It’s all a balance. Somebody could spend their life obsessing over their numbers, drawing graphs, weighing carbs to the nearest microgram, walking for exactly 10,000 steps spread between 3 periods of the day, eating the same meals every day - you get the idea! That’s not living though. Type 1 needs to fit into our lives. This doesn’t mean we should neglect it, just not let it take over or go ultra-strict. Importantly, he could be at risk of losing his hypo awareness. That is not good.
 
I was wondering if the weight loss might be linked to Pancreatic Enzyme insufficiency (PEI) and was going to ask if he had issues with his bowels and then you mentioned Crohn's so I am guessing he does have problems with his bowels. Has he ever had a pancreatic scan as I am wondering if Chrohn's is a misdiagnosis or masking PEI. Do you know what tests they did to confirm his Type 1 diagnosis. Just wondering if he might actually be Type 3c rather than Type 1 ie His diabetes is related to damage/disease of his pancreas rather than autoimmune diabetes which is Type 1. There does seem to be an increased incidence of PEI in Type 1 diabetics as well as it being much more common in Type 3c. I believe there is a test called a faecal elastase test which would help identify PEI. He would then need Pancreatic Enzyme Replacement Therapy (PERT) usually capsules of Creon to help his body digest his food and get nourishment from it, so that he can stabilize his weight or put some back on.
 
Inka said:
The Crohn’s might explain the weight loss then. Is it something he’s mentioned to his specialist?
Yes, unfortunately the Libre can obsess some people in a bad way. It should be a useful tool not a tyrant. The target for the Libre is 70%+ of the time between 3.9 and 10 - that counts as very good control, so if he’s achieving that he’s doing well.

It’s all a balance. Somebody could spend their life obsessing over their numbers, drawing graphs, weighing carbs to the nearest microgram, walking for exactly 10,000 steps spread between 3 periods of the day, eating the same meals every day - you get the idea! That’s not living though. Type 1 needs to fit into our lives. This doesn’t mean we should neglect it, just not let it take over or go ultra-strict. Importantly, he could be at risk of losing his hypo awareness. That is not good.
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Checked in with my mum and apparently his sugars are actually going high overnight at the moment. (and the doctor he's seeing is aware of the crohns.)

He's trying to cut out even more sugar rather than take more insulin. It's as though he thinks he's "losing" at diabetes if he has to inject higher doses. Don't know how to get him out of that mindset.
 
rebrascora said:
I was wondering if the weight loss might be linked to Pancreatic Enzyme insufficiency (PEI) and was going to ask if he had issues with his bowels and then you mentioned Crohn's so I am guessing he does have problems with his bowels. Has he ever had a pancreatic scan as I am wondering if Chrohn's is a misdiagnosis or masking PEI. Do you know what tests they did to confirm his Type 1 diagnosis. Just wondering if he might actually be Type 3c rather than Type 1 ie His diabetes is related to damage/disease of his pancreas rather than autoimmune diabetes which is Type 1. There does seem to be an increased incidence of PEI in Type 1 diabetics as well as it being much more common in Type 3c. I believe there is a test called a faecal elastase test which would help identify PEI. He would then need Pancreatic Enzyme Replacement Therapy (PERT) usually capsules of Creon to help his body digest his food and get nourishment from it, so that he can stabilize his weight or put some back on.
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That's really interesting, I wasn't aware of type 3. Initially he was misdiagnosed type 2, and when they decided it was type 1 there was some pancreatic investigation to look for what might have triggered it. I'm not sure how in depth that investigation was though. Definitely worth asking his doctor to revisit. Thank you!
 
If he is not taking enough insulin then his body will not be able to access that glucose in his blood and use it, so that would definiitely cause him to lose weight and sweat, particularly through the night. I know once my levels get up to about 10 I am restless and sweaty, but I am guessing your father is going higher if he is losing weight through insufficient insulin.

It is important to understand that from time to time we need to increase our insulin doses and at other times perhaps reduce them. Exercise or inactivity can cause such changes as can changes in the seasons, hormones or a further loss of his insulin producing beta cells. You win at diabetes if you adjust your insulin doses to more or less balance your BG levels. There are no awards for using less insulin than you need and you risk the opposite ie damage to small blood vessels and nerves in the eyes and feet particularly, so he is doing himself no favours resisting increasing his insulin doses. Is he under a hospital clinic for his diabetes or a GP? If it is just a GP then he really should press for a hospital clinic referral. GP's no almost nothing about diabetes and certainly not enough to advise a Type 1 or Type 3c about insulin usage.

Do you know which insulins he uses and does he have a Freestyle Libre arm sensor to monitor his levels or is he totally reliant on finger pricking?
 
I believe with PEI the stools are often yellowish in colour and greasy so they float and really bad smelling (sulphurous) and can be an urgent need to pass sometimes with pain and diarrheoa. Just in case any of that rings bells with your Mum. I know people don't like to talk about such things and your Dad may be reluctant to discuss or describe in detail but sharing the same toilet facilities with someone means that you are likely to have more of an idea of what is going on even without discussing the details. We do have members here who are Type 1 and have also developed PEI but I think most with PEI ate Type 3c.
Has your Dad ever had gall bladder issues as that can sometimes lead to pancreatic problems down the line.
 
rebrascora said:
If he is not taking enough insulin then his body will not be able to access that glucose in his blood and use it, so that would definiitely cause him to lose weight and sweat, particularly through the night. I know once my levels get up to about 10 I am restless and sweaty, but I am guessing your father is going higher if he is losing weight through insufficient insulin.

It is important to understand that from time to time we need to increase our insulin doses and at other times perhaps reduce them. Exercise or inactivity can cause such changes as can changes in the seasons, hormones or a further loss of his insulin producing beta cells. You win at diabetes if you adjust your insulin doses to more or less balance your BG levels. There are no awards for using less insulin than you need and you risk the opposite ie damage to small blood vessels and nerves in the eyes and feet particularly, so he is doing himself no favours resisting increasing his insulin doses. Is he under a hospital clinic for his diabetes or a GP? If it is just a GP then he really should press for a hospital clinic referral. GP's no almost nothing about diabetes and certainly not enough to advise a Type 1 or Type 3c about insulin usage.

Do you know which insulins he uses and does he have a Freestyle Libre arm sensor to monitor his levels or is he totally reliant on finger pricking?
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He's recently started using an arm sensor. He sees a diabetes nurse once a year, and other than that is only under the care of a GP (and as of last week a haematologist who is looking for causes of the night sweats and weight loss.

He has just stubbornly admitted that he is eating less than he used to. A bad idea for someone who was already thin and getting thinner!
 
D1Daughter said:
He's recently started using an arm sensor. He sees a diabetes nurse once a year, and other than that is only under the care of a GP (and as of last week a haematologist who is looking for causes of the night sweats and weight loss.

He has just stubbornly admitted that he is eating less than he used to. A bad idea for someone who was already thin and getting thinner!
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Does this “arm sensor” look like a white disc?
 
D1Daughter said:
Checked in with my mum and apparently his sugars are actually going high overnight at the moment. (and the doctor he's seeing is aware of the crohns.)

He's trying to cut out even more sugar rather than take more insulin. It's as though he thinks he's "losing" at diabetes if he has to inject higher doses. Don't know how to get him out of that mindset.
Click to expand...

As I’m sure you know, people with diabetes take a wide, wide variety of insulin amounts. Also, the amounts people need can change over time (and change back again). Just as an example, I used to take 5 units of insulin to cover my breakfast. However, when I was pregnant, this increased to 20 units eating the exact same breakfast! I wasn’t ‘losing’ at diabetes - it was the very normal insulin resistance of pregnancy. Now, that same breakfast only needs 3 units. That’s not because I’ve scored some kind of massive triumph over the diabetes, it’s perimenopause. At each stage, I needed what I needed, whether that amount was large or small.

I know none of those things will ever affect your dad, but they’re obvious examples to show that we need the amount of insulin we need, whether that’s 5 units in total a day, 25 in total daily, 55 or more. Maybe it would be a good example to give him because it’s somewhat detached from him so he can look at it more objectively. The amount of insulin someone takes doesn’t mean their diabetes is better or worse than another person’s. Before we were developed Type 1, our bodies made varying amounts of insulin. The amount made was dictated by need. Having Type 1 is just the same - insulin doses dictated by need.

His body needs appropriate amounts of food. If he can’t eat what his body needs because he’s trying to limit how much insulin he takes, then, if he wants to look at it as a win/lose thing, he’s actually losing.

I suspect he might be struggling with control and needs a bit more support. Does he have the number of his hospital diabetes centre which he can phone and request a callback from a DSN?
 
I live a long way away unfortunately. I'm sure he doesn't refrigerate his insulin though. When he comes to visit he doesn't put any in my fridge. It's in a pen.
 
D1Daughter said:
When he comes to visit he doesn't put any in my fridge. It's in a pen.
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That is perfectly normal. Insulin is fine out of the fridge for up to 30 days.
Insulin usually comes in boxes of 5 pens (or cartridges). The one in use stays out of the fridge and I take it wherever I go whilst the unstarted ones remain in the fridge to prolong their lives.

Satan’s little helper said:
Hello, @D1Daughter , what insulin is your father prescribed? (There may be two types of insulin. A fast acting & a slow release?)
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There are more types of insulin: it is possible that D1 Daughter's father is using a mixed insulin.
I think it makes more sense to ask when he takes his insulin.
D1 Daughter may notice if he takes his insulin whenever he eats or once or twice a day at fixed times.
 
D1Daughter said:
I live a long way away unfortunately. I'm sure he doesn't refrigerate his insulin though. When he comes to visit he doesn't put any in my fridge. It's in a pen.
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Hello, not to worry. I don’t fridge my travel supply on a visit. Dark cool place that’s not in excess of 28C.
More likely to leave it behind if I did. 😉 Also some insulins can sting if injected from the fridge, so your father is not breaking any cardinal sin on his personal practices.
The weight loss is a concern. Though I don’t personally feel cutting out sugars as part of his choice (if we’re talking about “cake?”) is an issue. A balanced diet on the other hand with appropriate insulin adjustment could help maintain weight? But your dad should keep the sweets on hand should sugars plummet. And not feel a fail, if they have.
Quite rightly so. You are a concerned loving daughter. (Your mum seems worried too.) Your dad sounds like a proud man.
Is there any way your dad could either join up to this forum or you could help him chat on a topic “just for him.” So he can discuss his diabetes in his own words and receive appropriate responses?

I can understand your father’s position. (If I get what you post correctly?) It concerns me with my impending “advanced yearage” (no one is getting any younger.) To a degree. Taking into account insulin for that, “slice o cake won’t hurt you.” Can be more hassle than it’s worth on my personal insulin regime.

Continue to be kind to the guy, and keep caring.
 
Hi
First time, I've replied on a forum. I've had T1 for over 35 years and I went to the doctor prior to covid, just to get my medication reviewed, she thought I was skinny, weighed me , just over 9st. But to cut a long story short and numerous tests & scans, my diabetes nurse suggested a test and found that I've PEI now. Now with the right drugs Creon 25.000 4 with every meal I'm now back to 11st. When the diabetic nurse told my doctor, he admitted that he'd not heard of that.
Maybe your dad can ask for that test
Steve
 
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