Hypo Help

[Wolf1]

Hello, my fiancé has been having hypos to the point of coma for a couple years now and has been getting worse. We were on a camping trip this past Thursday and it happened again while she was sleeping. She was taking her shots and eating before bedtime and since we stopped that, she hasn’t had it happen in a few months but it happened again Thursday night. We ate subs around 6pm, she took less insulin (as usual) than it suggests (because even though they lowered it, taking the amount it suggests always has her bottom out) and we had our evening campfire with hotdogs and marshmallows. At approx 1am before bed, it was at 9, she took her nighttime long acting one and she was in a coma state by 4am.

I called 911 and this time it took over an hour and a half to bring her back. I kept telling them she’ll come out of it but just takes a bit of time and they were nice enough to not rush her right to the hospital. They tested her in the back of the ambulance and it was at 14 but she still wasn’t fully coming to. It has been taking them longer and longer to bring her back and her specialist just keeps giving her the runaround. We went out of the city a few months ago and before leaving the house, her level was at 10, she ate a small breakfast but with not too many carbs and within 2 hrs, she was in hypo state in the car. The last time she took her fast acting insulin was the evening before. The doctors can’t figure it out so they just keep lowering it and it’s not getting better. I’m so afraid to have her go to sleep now because of the hypo coma she goes into. My stress levels are at max. Does anyone here know if some diabetics are like this or does anyone have this constantly happpen to them?

Thank-you for your time.

 

[evilclive]

I've had quite a few glucagon shots in my time, and I reckon my wife knows your fear. Night time is when it always struck, and that feeling of coming round with a concerned missus sitting next to me stuffing sweets in my mouth while asking questions, and thinking "Oh no, not again" is one I know well.
It's not necessarily the fast which does it - too much slow has the same effect, as does activity. Both need adjusting, and it can be quite small tweaks.
Technology has arrived though. There's ways of getting low sugar alarms - not necessarily medically approved, but I'm very impressed so far. Mine is based on a Freestyle Libre, but I'm guessing you're in the US, so that's not an option. Dexcom is though - and does that have alarms by default?
The other thing a CGM or equivalent can do is show you how blood sugar is behaving through the night - eg if there's a steady decline, or something more complex. This is a lot harder to work out with fingerpricks.
If there's a cost question, it's hard. The lack of stress or worry for me is worth quite a lot. There's also the irritation of being woken up by that alarm - even if I know it's for good reason, it's still not a happy thing. But I'm willing to take that irritation if I never have to wake up with a headache and swollen and bleeding tongue again.

 

[kitedoc]

Hi @Wolf1, Sorry to hear about your fiancee's troubles and the stress that places on you. Thoughts based on my own experience of 51 years on insulin and not to be taken as health professional advice or opinion. All below needs confirmation and discussion with her diabetic nurse and doctor.
1) could the activity of setting up camp tend to drop her blood sugar so, more to eat, even less insulin as hypo prevention options ? And it seems unusual for nighttime insulin to be taken at 1 am, could her short acting insulin accidentally have been taken then?
2) why has not the GP or specialist at least recommended and prescribed Glucagon injection and you trained in use of it for her (glucagon influences the liver to release stored up glucose and has the advantage of use even when she may not be able to swallow, and wake her up to the point of being able to swallow. Hypos can cause damage ++.
3) perhaps until her BSLs are more stable consider avoiding camping, given the length of time for the ambulance response
4) severe hypos particularly at night are often a criteria for the diabetic to be considered for an insulin pump. I was switched to a pump for this reason and it certainly helped me. Why has the consultant not discussed this option ? Several pump brands also can have a continuous BSL monitoring devices (continuous glucose monitor - CGM) added so that realtime BSLS and trends can be watched and a falling or low BSL can trigger an alarm. And in one pump brand the program actually reduces the insulin infusion rate when a low BSL is recorded. There are also monitors like the Libre which can be worn without need for the pump, or use of mobile phone, an app and CGM (as used on the pumps) but used without a pump.
5) When my Bsls were less stable I lost some of my awareness of hypo symptoms, so that it was longer before a hypo was noted. Improved BSLs with the pump helped return my previous level of hypo awareness.
6) Reduced need for insulin can have many causes; some that I have heard of : hormonal disturbance ? Thyroid ? adrenal ? insulin production, reduced kidney function; increased physical activity; reduced carbohydrate intake, change in insulin type/timing of insulin administration.
7) I have heard of service dogs being trained to sense an impending hypo and alert the owner and those accompanying them
8) everything else not thought of yet !!!
Again, Please accompany her to her doctor, ask questions and get answers. Your health may also be at risk due to the stressful situations involved and your alertness and presence is what has saved her. Best Wishes and safer camping !!

 

[Juicyj]

Hello and welcome @Wolf1

Sorry to hear about your fiance, I can understand your worry. I haven’t had an issue with hypos however based on the severity of these can she wear a continuous glucose monitor and something that will alert her when she’s going too low like a Dexcom ?

In regards to her hypos it’s hard to really know what’s going on without knowing more about her regime, insulin, ratios etc, but nighttime hypos is suggesting her basal is still too high and needs adjusting, and then going low within 2 hours of breakfast means her quick acting insulin ratio was too high but her specialist needs to review this urgently now as it’s affecting your quality of life and is becoming a danger to her well being.

Blood glucose levels are affected by many things, heat, hormones, activity levels and insulin ratios particularly for women can change during the month.

I would also suggest getting ‘think like a pancreas’ to help build your knowledge.

I hope she is feeling ok too, if you don’t already carry one can you get a glucagon pen which will help her if she falls unconscious again and you can administer it.

Not sure what else I can say except I hope she gets some support soon and this gets resolved, best wishes.

 

[Wolf1]

Thank you for all your responses. The problem with something like Dexcom or a pump is we have no coverage and currently don’t have the money for something like that at this time.
She normally takes her long acting (tresiba) around midnight because she doesn’t get off work until around 10:30-11p, so takes it before this later bedtime. She does have kidney issues due to levels being too high for many years before I met her and this has led to a lot of water retention, which in turn, has made her levels unstable. There were times when her weight and water retention was low and this seemed to be when her levels were at their best and hypo was a non issue. Now, the different types of blood pressure and water pill medication they keep giving her seems to be having no effect.

The first time I called an ambulance for her 5 yrs ago, I remember them, like most, saying it wasn’t normal for it to take so long for her to come back. It seems to take a lot for her to regain consciousness. She did go swimming and was cold when it really wasn’t cold but that’s just how she is and has constant body temperature issues. She doesn’t take a lot of insulin, as she doesn’t eat a whole lot. We tried low carb a while back and the result was extremely high cholesterol and iron issues so we stopped that. I remember the last hypo that wasn’t during her sleep and didn’t result in a coma was before going to a daytime movie where I believe it was tested well above 10, meter suggested take 5 and she took 3 units with a sandwich and fruit...within an hour she was almost in a delirious state of hypo where I had to quickly get her out of there and to a fast food place. She didn’t even feel it come on.

It’s just so frustrating and feel so helpless. I hate this disease. I feel for anybody who has to live this way. She has lived with this for almost 30 years and I hold her and cry for her every time this happens. She seems more okay with it and doesn’t show much despise or sadness which puzzles me. I would be broken having to live this way. Maybe because I’m not used to it and that’s why it affects me differently. Is it normal for someone to take a long time to come out of a hypo coma once given glucose by an EMS or by someone with the glucose shot? Can dropping that low during sleep (unconscious) be common? If so, what do people do if they don’t have a significant other around that night that knows the signs (intense sweating/screaming/slow breathing)? If it’s that low and that person remains in that state with no glucose to the brain, isn’t brain damage and death something that will follow shorty after being in this coma like state? I guess I’m wondering if this is normal or is it unique to just her and maybe a comorbid condition going on. I read people say how they get to hypo and even to 3 or 2 and they are able to get to food and reverse it. It hits her and many times even when she still somewhat lucid, I have a difficult time getting her to eat because she’s so out of it. She’ll just stare and not pay attention. Anyway, thanks for taking the time you guys and answering questions. I feel for you all.

 

[kitedoc]

Hi again @Wolf1, I feel for you guys with what sounds like a relatively unsupportive health system. Again from my personal experience and knowledge, not professional opinion or advice.
As I understand it kidney issues may mean insulin takes longer to be eliminated from the body. So how long is the Tresiba really lasting and could this lead to unexplained overlaps and build up over days ( I think we would called it excessive insulin on board) and increased risk of hypos, as well the same in shorter intervals with short-acting insulin.?
Perhaps the above explains also why her hypos take longer to resolve? Both questions for her specialist to answer AND solve!!!
From my own experience I know that I can still be exhibiting hypo symptoms when my measured BSL is back to or above normal. Our bodies release adrenaline and glucagon in response to lower BSL and the brain is sensitive to low BSL since glucose is its main source of energy. The reaction to adrenaline for instance and effect of low BSL on the brain takes time to abate.
You mentioned her swimming before one hypo, did she adjust her insulin to allow for the BSL lowering effect of exercise ? This lowering of BSL may occur within an hour or two in some people, I have heard, and particularly at the 6 + hour mark where the muscles, depleted of their glucose stores, 'extract' glucose from the blood stream.
And one symptom of hypos can be a lowering of body temperature.
From what you say her hypo awareness seems to be lowered also. It may be worth seeing if the Libre is within your price range.
Also beware that beyond a certain level of kidney problems certain blood pressure tablets (ACE-inhibitors etc) can cause further kidney damage (but not where kidneys are functioning normally) Google: side-effects of ACE-inhibitors and information pamphlet with the medication or available from the chemist (druggist)
And low-protein diets and avoidance of foods containing potassium are sometimes prescribed for people with kidney problems.
Also I failed to mention last time that alcohol in the blood stream after a drink can block the release of glucose from the liver and prevents injected Glucagon working also.
I do hope there is a way for her to obtain the best medical advice in order to reduce the problems she and you face.