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

[Drummer]

Have there been any other drugs prescribed?
So many factors could be at work - it is just a matter of getting someone to take notice of what is going on, though that is not easy when there is such a ponderous belief in 'it can't be the medication'.

 

[Pumper_Sue]

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.

From reading your posts Gale, your son sounds just like me when I was tried on different insulin's. I would go from 0 -30 and 30 - 0 within an hour due to allergies caused by the insulin or ingredients/additives and with no hypo warnings either.

Ask that your son or ask your son to ask to be referred for testing regarding allergies and antibodies in regard to different insulin's.

 

[galexander]

I'd like to thank you all for your kindness and help. I now have a list of questions to ask at the next clinic and consultant visit which I would never have known to ask before. We've just picked up a medical form which the university asked to have completed (his course leader thinks he has Asperger's Syndrome) and as usual, the "effect of the disability" has been put down to "poorly controlled" diabetes. I think I'm going to have to have a full and frank discussion because he tries very hard to control it so I'm going to have to go and ask them what they mean.

 

[Pumper_Sue]

(his course leader thinks he has Asperger's Syndrome) and as usual, the "effect of the disability" has been put down to "poorly controlled" diabetes.

Does his course leader have any medical training? 🙄 I personally think your son needs a new hospital and team and also a large bucket of salt to dish out for all the unhelpful advice given in everyday life.

 

[Grogg1]

If your son is at Uni you can get a DSA assessment. They are much more aware and sympathetic of how various illness/conditions affect students and will offer support and make contact with Uni to put in place a plan.

Agree with others that something in his medication or maybe his diet is affecting him.

 

[galexander]

Hi there
I posted this (underneath) at the end of July and, given that you were all so much help, I thought I should give you an update. Shortly after I posted this we got an emergency appointment with his diabetic nurse. She first of all suggested a glucose monitor patch, which he has had for about a year. It's a hundred quid a month but we were desperate. She then suggested an insulin pump - fine, but do you really think his problems are all caused by diabetes? Because I was a bit more confident having been on this forum, I pushed it and we got an appointment with a consultant endocrinologist at the end of August. The consultation started with the usual "maybe we should swop Lantus for Levemir" conversation but we had rehearsed our presentation which went along the lines of "here's what I used to be able to do, even though I have diabetes..." Something must have clicked and he booked an emergency MRI. He called yesterday to tell us my son has hydrocephalus and it could have been caused either by frequent overdose of glucose or physical damage to the head from passing out due to hypos. We'll see the neurologist next week after they've completed more tests but I just wanted to share the situation. The moral of the story is that once you have diabetes, it's hard to get attention away from it. When we asked our GP for medical evidence for him to interrupt his university course, they put the reason as "poorly controlled" diabetes! The best advice came from you kind people, who emailed to say "no, it's not".
So thank you all.

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?

 

[Northerner]

Hi there
I posted this (underneath) at the end of July and, given that you were all so much help, I thought I should give you an update. Shortly after I posted this we got an emergency appointment with his diabetic nurse. She first of all suggested a glucose monitor patch, which he has had for about a year. It's a hundred quid a month but we were desperate. She then suggested an insulin pump - fine, but do you really think his problems are all caused by diabetes? Because I was a bit more confident having been on this forum, I pushed it and we got an appointment with a consultant endocrinologist at the end of August. The consultation started with the usual "maybe we should swop Lantus for Levemir" conversation but we had rehearsed our presentation which went along the lines of "here's what I used to be able to do, even though I have diabetes..." Something must have clicked and he booked an emergency MRI. He called yesterday to tell us my son has hydrocephalus and it could have been caused either by frequent overdose of glucose or physical damage to the head from passing out due to hypos. We'll see the neurologist next week after they've completed more tests but I just wanted to share the situation. The moral of the story is that once you have diabetes, it's hard to get attention away from it. When we asked our GP for medical evidence for him to interrupt his university course, they put the reason as "poorly controlled" diabetes! The best advice came from you kind people, who emailed to say "no, it's not".
So thank you all.

Thanks for the update @galexander 🙂 Glad to hear you finally have a diagnosis - I hope that the consultation with the neurologist goes well, and that there is a good and effective treatment to overcome the problem 🙂 Good luck to you both 🙂

 

[Copepod]

Thanks for updating us @galexander. I hope that the neurologist appointment provides some solutions for your son. How is he feeling these days?

 

[Pumper_Sue]

@galexander, it's lovely to hear from you again. I'm so pleased you now have answers and hopefully a solution can be found to help your son. I class you as a Mum in a Million like all other Mum's for fighting tooth and nail for your child.
Please keep coming back to update us, wishing you and your son well.

 

[Ditto]

Thank you for the update. Thank goodness you're getting it sorted. 🙂

 

[galexander]

Thank you all. He's been recommended a low carb diet because it seems his system just can't handle too much insulin (he's not impressed with no bread, potatoes or pasta). Someone told me about Dr Richard Bernstein so I've been reading and watching him. Has anybody tried his regime - pretty extreme but he controls his blood glucose. He says he hasn't eaten fruit or most vegetables for 50 years! Trouble is, Alex has a BMI of 16! That's another thing - if you're diabetic and skinny, you confound the medical profession. I don't know about Mum in a million, Pumper Sue, my husband and I can't believe we watched him fall down the stairs and forget his own name for over two years before we made a fuss.

 

[Amigo]

You've been an absolute trooper on your son's behalf and it must be a relief to at last have a medical diagnosis instead of the frustrating insistence that everything is diabetes related. The medical services have failed your son over a long period of time and have stubbornly pursued the same incorrect path. I wish him well for the future and hope you can now find some peace of mind.
I have an adult autistic son and know only too well that being a 'forever mum' can be hard when there's constant battles to be had on their behalf. Warm best wishes, Amigo

 

[Pumper_Sue]

Bernstein goes to the extreme so no need to go to those lengths. What he doesn't tell you is he totally hypo unaware has no time or knowledge of pumps etc.

Yep watch the carbs consumed and type, we all do this to a certain amount. Fats and protein will fill your son up, there's burgen bread linseed and soya so try that and most super markets do high protein rolls and bread, so have a look around.
Weight shouldn't be an issue with your son, I've met a few type1's who are overweight then if you see what they eat it's hardly surprising. I'm not overweight and been on insulin for almost 53 years 🙂

 

[trophywench]

Well over-eating is such a vicious circle for diabetics on insulin. I think - get the amount of carbs right with the appropriate level of insulin for his body to deal with them - then his weight and BMI will gradually even themselves out to whatever his body requires!

Feed him protein as Sue said - eggs are terrifically filling for such small cheap (comparatively) things to eat for starters, Funny, we've just been on a fishing holiday with a random gaggle of blokes my husband used to work with (we're retired now) and one of them wasn't a carp fisherman at all though he did fish as a lad. He was taken along because he's now divorced and was suffering terribly from stress - to ensure he got a holiday he could afford away from everything familiar, with mates all with their sensible heads on in general. He shared with the guy whose car he went in - and because he's had to get used to cooking for himself now - he's found omelettes are the way to go. Pete didn't hardly recognise the bloke because instead of looking skinny pinched and drawn - I tell you what - he looks amazing now! He'd got the other chap almost weaned off some of the c**p he's used to by the end of the week! The other one was amazed at how filling omelettes were - and not a chip in sight. Think most of his pot noodles that he'd taken to eat, came back with him ! LOL

Veg (just not spuds LOL) are also filling.

Re the D - has your son ever done something referred to as Basal testing? It's to test in a structured way, to ensure your body is getting the correct rate of basal insulin to happily tick over when there's no food, bolus insulin, exercise or anything else happening concurrently. Only then when he's got that adjusted and timed so he gets the right amount at the right time, should he test his carb ratio for mealtimes. He should have learned how to do this on DAFNE. It's a PITA doing it - but we all have to. Basal patterns don't stay static for all that long at a time unfortunately as they're affected by all sorts of outside influences - the weather, stress (which can either be happy stress - excitement at something like a holiday, a wedding, a birth etc or bad - worry over anything at all, or an accident or a death, whatever) and it's impossible to control to any long-term degree.

I hope he starts to do better soon!

 

[Copepod]

Thank you all. He's been recommended a low carb diet because it seems his system just can't handle too much insulin (he's not impressed with no bread, potatoes or pasta). Someone told me about Dr Richard Bernstein so I've been reading and watching him. Has anybody tried his regime - pretty extreme but he controls his blood glucose. He says he hasn't eaten fruit or most vegetables for 50 years! Trouble is, Alex has a BMI of 16! That's another thing - if you're diabetic and skinny, you confound the medical profession. I don't know about Mum in a million, Pumper Sue, my husband and I can't believe we watched him fall down the stairs and forget his own name for over two years before we made a fuss.

To be honest, when underweight, the key aim has to be as high calorie food as your son can tolerate - ie anything he likes eating. Where possible, add things, especially fats, to increase calorie content eg a teaspoon of butter in mashed potato. I understand that you're aiming for low carbohydrate, but low doesn't mean none.
Most people with type 1 diabetes are underweight at diagnosis, while majority (usually stated as 80%) of people with type 2 diabetes are overweight at diagnosis. After diagnosis, getting insulin helps people with type 1 diabetes to regain weight, while those with type 2 who are overweight need to modify diet and exercise to lose weight.

 

[Robin]

One thing to bear in mind, if your son needs to restrict carbs but not lose any more weight, is that fat has twice as many calories as carb. So replacing carb with things containing good fats, such as nuts and seeds, etc should mean that his calorie intake doesn't suffer. For example, one slice of seeded bread with butter or marge and a thick layer of crunchy peanut butter, has as many calories, and is as filling, as two slices of normal bread with a thin layer of butter or marge.

 

[galexander]

V. interesting post on basal testing, thanks. Will take this up at the next clinic. In the meantime, his consultant has lowered his basal (Lantus) to 16units per 24 hours, split into two, which seems to have made a difference. I know the jury is out on low carb but we've targeted less than 100g per day and less than two units mealtime insulin which is also helping. This amount of insulin is a fraction of the amount he used to take and I believe insulin to be the main culprit in his condition.

We've been quite surprised at how achievable low carb is - quitting potatoes has been hard but we've managed not to notice pasta or rice. We used to be big on stir-fry with noodles, but that's had to go in the "too much" pile as well.

Still waiting on the final diagnosis of the neurologists but they haven't ruled out glucose levels and vascular damage affecting the working of the brain. Not sure which is worse - too much or too little but no doubt all will be revealed in due course.

Thanks again and take care all
x