Is it diabetes ... Or is it mental illness?

[galexander]

I am the mother of a manic Type 1 whose life has been ruined by diabetes. He has become a completely different person since diagnosis - at university, seven years ago. He is unemployable and mostly unlikeable, with no short term memory or, seemingly, any ability to run his life. His personality has changed beyond recognition. The medics click their tongues and shake their heads and tell us that he just isn't managing it well enough but he has these symptoms even when his readings are between 5 and 7. He has seen psychologists and psychiatrists who tell us it is because of diabetes and the diabetic team say he's mentally ill and have referred him to a neurologist. Has anybody had or know of similar experiences which have been turned around?

 

[Pumper_Sue]

Hi Gale,
I'm so sorry to hear of the problems your son is having. The only suggestion I can make is to perhaps try a different type of insulin, There are animal (pork), synthetic and analogue insulin's on the market. So a change to a different type might be worth a try if it hasn't been tried before.

 

[mikeyB]

Hi, Galexander, and welcome to the forum. What a terrible position for your poor son to be in. And yourself, of course.

I cannot understand the position of the psychiatrists. Diabetes, of itself, does not cause psychotic symptoms, and nor does insulin. Having diabetes can cause reactive anxiety and depressive symptoms, but never florid symptoms such as your son has. A second opinion is required.

The diabetes team is right - he's mentally ill, but the referral to a neurologist is strange. Do they suspect a physical brain problem? That said, you may well get a firm opinion from the neurologist about the best way forward. You certainly can't remain suspended between the two specialties, for sure.

 

[galexander]

Mike
Thank you for your sympathetic reply. I'm at my wit's end. The GP has referred him to the neurologist because apparently there could be some vascular damage from taking wrong/too much insulin when first diagnosed, which was when he was away from home so not monitored too well, I imagine.

 

[galexander]

Hi Gale,
I'm so sorry to hear of the problems your son is having. The only suggestion I can make is to perhaps try a different type of insulin, There are animal (pork), synthetic and analogue insulin's on the market. So a change to a different type might be worth a try if it hasn't been tried before.

 

[galexander]

Thank you Sue. I think he's had just about every type of insulin available. So much so, that his clinic refer to him as "insulin sensitive" whatever that means. He does seem to have to take more than most people for it to have any effect. His diabetic nurse advises him to "run it high" and says she'll accept anything other than high teens but he should aim for no more than 15. So he spends his life feeling awful or having numerous hypos from the crash if he tries to come down. He seems to be a diabetic who can't tolerate insulin!

 

[everydayupsanddowns]

So sorry to hear what your son is going through.

Has he been able to attend any structured education about managing his diabetes? I'm not sure whether that would help, but it might offer him some extra tools and strategies if he is struggling to find that middle ground between high and hypo.

 

[Pumper_Sue]

Thank you Sue. I think he's had just about every type of insulin available. So much so, that his clinic refer to him as "insulin sensitive" whatever that means. He does seem to have to take more than most people for it to have any effect. His diabetic nurse advises him to "run it high" and says she'll accept anything other than high teens but he should aim for no more than 15. So he spends his life feeling awful or having numerous hypos from the crash if he tries to come down. He seems to be a diabetic who can't tolerate insulin!

So in that case has your son been offered a pump?
I doubt he has been offered animal insulin so it's worth checking.
Has he been on a DAFNE course (carb counting) There's also a couple of books that might help no end, using insulin and think like a pancreas.

 

[galexander]

So in that case has your son been offered a pump?
I doubt he has been offered animal insulin so it's worth checking.
Has he been on a DAFNE course (carb counting) There's also a couple of books that might help no end, using insulin and think like a pancreas.

 

[galexander]

Thanks Sue - I will check the animal insulin, or at least mention it to him. I have to have permission to attend clinics because it's embarrassing for a young adult male to take his mum with him (or so he tells me). Yes, he has been on a DAFNE course as well as a few others.

 

[galexander]

So sorry to hear what your son is going through.

Has he been able to attend any structured education about managing his diabetes? I'm not sure whether that would help, but it might offer him some extra tools and strategies if he is struggling to find that middle ground between high and hypo.

 

[galexander]

Thanks for this. Ironically, he manages his diabetes well. I know it sounds bonkers to say so, but he does everything required of him - including attending courses which the hospital was very good at running. He has attended a DAFNE course and understands carb counting. He takes his insulin religiously and has a Freestyle Libre patch on his arm. The frustrating thing is trying to get past diabetes and having other help as the NHS seems to write everything off to diabetes.

 

[Wirrallass]

Hello Gale & your son - and a warm welcome to the forum - so sorry to hear your son - and yourself are struggling to cope. I'm also sorry that I am unable to offer you any advice being Type2 and not using insulin - but I sincerely trust there will be a solution - resolve - and soon. Understanding of your sons reluctance for you to accompany him to his appointments of which I'm sure he would benefit your presence - you could take mental notes to discuss with him once you're home. Good luck - take care - and do please stay in touch as to your sons progress x
WL

 

[Ditto]

Hello and welcome to the forum. I'm so sorry for your troubles. I think diabetes causes a lot of things and definitely how we act and think. My sister can sometimes be bonkers and I know it's her sugar levels. My friend's husband, he was the same, she knew when he was out of control because the decisions he was making were crazy. A horrible disease. Both Type 2 though.

 

[Lucy Honeychurch]

I'm very sorry to hear about your sons struggles and how it must be very difficult for you also. It is dreadful that he is being pushed from pillar to post with no end in sight
Do you know if your son used any 'recreational' drugs or smoked weed at uni, or indeed still is? I'm sorry to ask you this, but it could be relevant to his behaviour.

 

[Pumper_Sue]

Another suggestion if I may. Has your son done any basal testing? I wonder if his basal profile just does not fit in with any of the basal insulin's.

 

[galexander]

I'm very sorry to hear about your sons struggles and how it must be very difficult for you also. It is dreadful that he is being pushed from pillar to post with no end in sight
Do you know if your son used any 'recreational' drugs or smoked weed at uni, or indeed still is? I'm sorry to ask you this, but it could be relevant to his behaviour.

 

[galexander]

While a parent can never know what goes on at university- he certainly has never shown any interest in drugs since he's been home which has been for six years now. It's difficult to appreciate how overwhelming his diabetes (or whatever it has brought with it) is. It has ruled out any kind of normal life. He spends his whole life trying to keep it in check. If he goes to the pub, which he does occasionally in an attempt to keep some friends, he is falling down senseless after maybe three pints, while his friends look on aghast. I know because when we have had to pick him up, we have had independent observers tell us. Then there are suggestions of drink spiking or substance abuse. It's also the first question asked by all medics. Our society judges young men harshly - with most people thinking the worst. Luckily most police know what an ID bracelet looks like because he has collapsed in the street with a hypo many times. Although I have had policemen tell me it can't be diabetes because "millions of people have it". I almost wish it was recreational drugs - there would be more help.

 

[Lucy Honeychurch]

While a parent can never know what goes on at university- he certainly has never shown any interest in drugs since he's been home which has been for six years now. It's difficult to appreciate how overwhelming his diabetes (or whatever it has brought with it) is. It has ruled out any kind of normal life. He spends his whole life trying to keep it in check. If he goes to the pub, which he does occasionally in an attempt to keep some friends, he is falling down senseless after maybe three pints, while his friends look on aghast. I know because when we have had to pick him up, we have had independent observers tell us. Then there are suggestions of drink spiking or substance abuse. It's also the first question asked by all medics. Our society judges young men harshly - with most people thinking the worst. Luckily most police know what an ID bracelet looks like because he has collapsed in the street with a hypo many times. Although I have had policemen tell me it can't be diabetes because "millions of people have it". I almost wish it was recreational drugs - there would be more help.

One of the reasons I asked is my eldest daughter developed a drug habit in her late teens, luckily it was for a short space of time, but her personality changed dramatically (for the worse) too. Fortunately she has been clean a long time now. I'm not trying to paint all youngsters as drug users, but I know a fair few affected by it.
I hope your son gets the help he needs and you get some peace of mind, as a parent it's very hard to deal with x

 

[Amity Island]

I am the mother of a manic Type 1 whose life has been ruined by diabetes. He has become a completely different person since diagnosis - at university, seven years ago. He is unemployable and mostly unlikeable, with no short term memory or, seemingly, any ability to run his life. His personality has changed beyond recognition. The medics click their tongues and shake their heads and tell us that he just isn't managing it well enough but he has these symptoms even when his readings are between 5 and 7. He has seen psychologists and psychiatrists who tell us it is because of diabetes and the diabetic team say he's mentally ill and have referred him to a neurologist. Has anybody had or know of similar experiences which have been turned around?

Hi, you say that all the problems started when he started Insulin, well we mustn't forget that although insulin dosed correctly doesn't cause problems, it's all the other stuff they add to it that can cause reactions. I hear people say all the time that "it can't be the insulin", I agree, but what about all the additives? If you look on any insulin the first thing it says is not suitable for anyone with a sensitivity to .......... All the additives. I met someone once who said he thought he was going mad on one of the insulins he was prescribed, changed it and was back to normal again. So it can cause "mental" like symptoms.