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Advice needed please

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Wendy_1964

Member
Messages
10
Type of diabetes
Type 1
My son is 31 and was diagnosed 3 years ago with type 1 after DKA and a week in intensive care. Diabetes was a totally new area to us, it is thought his medication clozapine for his schizophrenia caused the DKA and type 1. It has been a hard battle for him to lower the blood sugar as the cocktail of mental health meds make him hungry, put on weight and increase blood sugar, he has got this down to btwn 8 and 14 but has gone up to 99 kgs in weight, he has a low dose of metmorfin. A consultant has told him today that due to his blood sugar and weight she has no choice but to give him the weightloss injection liraglutide, he refused as he is on a cocktail of mental health/!heart meds and insulin and she told him if it is the same in 3 months she has no choice but to give him it. Aside from me being very angry at what surmounts to bullying and has sent his mental health through the roof, could anyone advise me of any experiences with the weight loss injection please
 
I can't help regarding T1, however, it might be worth you researching low carb high fat. Many of us control our blood glucose. It does take a few weeks to get over carb addiction, but once done, you are no longer hungry and the weight melts away.
 
Wait, what??? What does she mean she has no choice but to give him whatever medicine? As far as I know it's not illegal to be overweight but very illegal to force someone to take drugs. If she really worded it like that, I think it's time for a very serious complaint.
I have no experience wit liraglutide, but a quick google search indicates it's mainly for type2's or overweight pre-diabetics and should not be used in T1, especially not with risk of DKA. Her advice might be dangerous as it seems you can go into DKA without having high blood sugars on this medication.
 
Wendy_1964 said:
My son is 31 and was diagnosed 3 years ago with type 1 after DKA and a week in intensive care. Diabetes was a totally new area to us, it is thought his medication clozapine for his schizophrenia caused the DKA and type 1. It has been a hard battle for him to lower the blood sugar as the cocktail of mental health meds make him hungry, put on weight and increase blood sugar, he has got this down to btwn 8 and 14 but has gone up to 99 kgs in weight, he has a low dose of metmorfin. A consultant has told him today that due to his blood sugar and weight she has no choice but to give him the weightloss injection liraglutide, he refused as he is on a cocktail of mental health/!heart meds and insulin and she told him if it is the same in 3 months she has no choice but to give him it. Aside from me being very angry at what surmounts to bullying and has sent his mental health through the roof, could anyone advise me of any experiences with the weight loss injection please
Click to expand...

Wendy - Sorry to hear you're all having a torrid time at the moment. Could I just check something? Does your son have "capacity", in the legal term? Is he medically capable of making decisions for himself? Does he self-inject, or have a district nurse come and do it for him?

Apologies if the questions are distressing, but it's important as you point out he has some day to day MH issues.

If he is, then just like the rest of us, he can decline treatment. Liraglutide isn't a once in a while medication, it is something taken regularly, usually weekly, and self-injected by the individual concerned. Perhaps your son's Consultant means she will feel compelled to prescribe it for him?

Edited to add a link to the Liraglutide information page: https://www.diabetes.co.uk/diabetes-medication/diabetes-and-victoza.html
 
Hi @Wendy_1964. My heart goes out to your son, yourself and your family. Mental health troubles are more than enough to deal with without the added burden of diabetes.
From my experience as a T1D, not as professional advice or opinion:
I gather that clozapine is prescribed where other medications and ways of administering them have been unsuccessful. At least that is my understanding based on some acquaintances' experience.
Is your son under some form of Mental health order whereby he has to take clozapine? And does this order extend to other conditions and medications? I share @Antje77 's concern about a patient's general right to decide whether to take prescribed medication or not.
Having said that, would your son be likely to adopt and stick to a low carb high fat diet? The downside is that his dose of insulin might need to be adjusted for the change in diet to prevent low blood sugars (hypos).
There are other medications which act to reduce the amount of sugars that are absorbed from the small intestine and can thus lower weight and blood sugar levels (BSLs) called alpha-glucosidase inhibitors (see Journal of Diabetes Investigation Mar 2014 Sugihara et al 'Comparison of three alpha-glucosidase inhibitors for glycaemic control and weight reduction in Japanese patients with obese Type 2 diabetes'. The main issues with these medications as I read the article are: increase in flatulence and that only glucose by mouth (or glucagon by injection or glucose by vein will work for low blood sugars.
Perhaps a discussion with consultant regarding the low carbohydrate high fat diet (and quoting both this website and Dr Unwin, UK GP who has treated many patients with this diet) and whether the alpha-glucosidase inhibitors is an option instead of the liraglutide (afterall your son is already taking clozapine and insulin by injection.) and most importantly whether your son would agree to diet and, if requested, other medication.
My Best Wishes to your son, yourself and your family.
 
He does have capacity in the legal term and is medically able to make decisions, he has mental health issues that are controlled well with meds
 
Antje77 said:
Wait, what??? What does she mean she has no choice but to give him whatever medicine? As far as I know it's not illegal to be overweight but very illegal to force someone to take drugs. If she really worded it like that, I think it's time for a very serious complaint.
I have no experience wit liraglutide, but a quick google search indicates it's mainly for type2's or overweight pre-diabetics and should not be used in T1, especially not with risk of DKA. Her advice might be dangerous as it seems you can go into DKA without having high blood sugars on this medication.
Click to expand...
Antje77 said:
Wait, what??? What does she mean she has no choice but to give him whatever medicine? As far as I know it's not illegal to be overweight but very illegal to force someone to take drugs. If she really worded it like that, I think it's time for a very serious complaint.
I have no experience wit liraglutide, but a quick google search indicates it's mainly for type2's or overweight pre-diabetics and should not be used in T1, especially not with risk of DKA. Her advice might be dangerous as it seems you can go into DKA without having high blood sugars on this medication.
Click to expand...
My son is not under any orders and he functions well with meds. I am going to speak to his diabetic nurse tomorrow (who is lovely) and ask if we can change consultant, this is the 2nd time we have seen her and the 2nd time she has tried to force this treatment on him
 
My son self injects with reminders frm me, his schizophrenia and depression is controlled well with meds, he was told i quote "I cannot allow this to go on and have no choice but to give you the Liraglutide" my son said he does not want it and asked for a further three months to try to lose weight and get blood sugar below 10 and he was told if he doesnt do this it cannot continue and he will have to have the treatment. To be honest my blood was boiling but didnt want to cause my son more anxiety and I reassured him he cannot be forced
 
kitedoc said:
Hi @Wendy_1964. My heart goes out to your son, yourself and your family. Mental health troubles are more than enough to deal with without the added burden of diabetes.
From my experience as a T1D, not as professional advice or opinion:
I gather that clozapine is prescribed where other medications and ways of administering them have been unsuccessful. At least that is my understanding based on some acquaintances' experience.
Is your son under some form of Mental health order whereby he has to take clozapine? And does this order extend to other conditions and medications? I share @Antje77 's concern about a patient's general right to decide whether to take prescribed medication or not.
Having said that, would your son be likely to adopt and stick to a low carb high fat diet? The downside is that his dose of insulin might need to be adjusted for the change in diet to prevent low blood sugars (hypos).
There are other medications which act to reduce the amount of sugars that are absorbed from the small intestine and can thus lower weight and blood sugar levels (BSLs) called alpha-glucosidase inhibitors (see Journal of Diabetes Investigation Mar 2014 Sugihara et al 'Comparison of three alpha-glucosidase inhibitors for glycaemic control and weight reduction in Japanese patients with obese Type 2 diabetes'. The main issues with these medications as I read the article are: increase in flatulence and that only glucose by mouth (or glucagon by injection or glucose by vein will work for low blood sugars.
Perhaps a discussion with consultant regarding the low carbohydrate high fat diet (and quoting both this website and Dr Unwin, UK GP who has treated many patients with this diet) and whether the alpha-glucosidase inhibitors is an option instead of the liraglutide (afterall your son is already taking clozapine and insulin by injection.) and most importantly whether your son would agree to diet and, if requested, other medication.
My Best Wishes to your son, yourself and your family.
Click to expand...
My son is not on an order to take Clozapine, he does take it willingly as no other antipsychotics worked and the clozapine keeps the symptoms under control. Your low carb hii fat advice is something I will follow up, thankyou for that advice. I will discuss that with his diabetic nurse tomorrow.
 
Antje77 said:
Wait, what??? What does she mean she has no choice but to give him whatever medicine? As far as I know it's not illegal to be overweight but very illegal to force someone to take drugs. If she really worded it like that, I think it's time for a very serious complaint.
I have no experience wit liraglutide, but a quick google search indicates it's mainly for type2's or overweight pre-diabetics and should not be used in T1, especially not with risk of DKA. Her advice might be dangerous as it seems you can go into DKA without having high blood sugars on this medication.
Click to expand...
 
Wendy_1964 said:
asked for a further three months to try to lose weight and get blood sugar below 10
Click to expand...
I'd say the insulin doses/insulin to carb ratio are the first things to look at for getting his bg below 10. That's the usual treatment for T1's. Weight gain is pretty common with both insulin and psychiatric medicines. Not nice, but much better than not taking them. I agree with above posters that eating less carbs may help with both the blood sugars as the weight gain, but if your son has enough on his plate already, making major changes in diet may be too much.

Liraglutide is NOT a usual treatment for T1 so before even thinking about it I'd want to have a very clear explanation why this nurse thinks prescribing this drug off label would be called for in your son's case.
 
Thank you for your advice. I have spent a while on google researching and I am not comfortable with it. I am going to speak to the diabetic nurse we usually see tomorrow and ask if we can see the consultant we usually see instead. Thank you for your advice
 
Antje77 said:
I'd say the insulin doses/insulin to carb ratio are the first things to look at for getting his bg below 10. That's the usual treatment for T1's. Weight gain is pretty common with both insulin and psychiatric medicines. Not nice, but much better than not taking them. I agree with above posters that eating less carbs may help with both the blood sugars as the weight gain, but if your son has enough on his plate already, making major changes in diet may be too much.

Liraglutide is NOT a usual treatment for T1 so before even thinking about it I'd want to have a very clear explanation why this nurse thinks prescribing this drug off label would be called for in your son's case.
Click to expand...
We have spent the evening looking at a diet plan !! It is the second time we have seen the consultant and the second time she has tried to force the treatment on him and the only explanation/information she gave has been that he has to get his weight down and BS, the usual consultant we see says BS usually 8 up to 14, odd occasions 16 is not too bad considering the high dose of clozapine he takes which also causes high BS. Thank you for your advice
 
Wendy_1964 said:
We have spent the evening looking at a diet plan !!
Click to expand...
Is he dosing his insulin according to the carbs he eats? If so, changing diet is perfectly fine - less carbs = less insulin (and probably less weight gain :) ). If he's on fixed insulin doses it's something else. Fixed dose - less carbs = nasty hypo.
 
Antje77 said:
Is he dosing his insulin according to the carbs he eats? If so, changing diet is perfectly fine - less carbs = less insulin (and probably less weight gain :) ). If he's on fixed insulin doses it's something else. Fixed dose - less carbs = nasty hypo.
Click to expand...
He is dosing the insulin to carbs 2.5 insulin to 10 carbs and fixed 32 lantus in the morning and 28 in the evening and 100 mgs metmorfin a day, 200 mgs sertraline, statins and daily meds which I cannot spell for tachycardia. It is his diet we need to address, due to the mental health meds he is always hungry and likes his cereal !! It is a constant battle !!
 
Thank you all for your replies, they really did help. I have had a long chat with my sons Diabetes Nurse today and she supports my request for a meeting with his Psychiatrist, diabetes consultant, cardiology consultant and GP which I have sent letters requesting so we can get advice from all areas and if it is agreed his 99kgs weight, BS and Hbac1 levels call for drastic action then a gastric band op wld be more preferable !! (I do not hold out much hope the meeting will happen). I have also been advised he cannot be forced to take the weight loss injection : ) thank you all
 
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