New partner is type 1 diabetic, need advice

[GlucoseGuardian]

Even though your boyfriend is injecting a lot of basal at night, basall insulin alone won't be sufficient to control bg levels in the presence of food being eaten. A bolus for food needs to be used and not just to correct high levels. This probably explains the keytones developing.

I have another t1 friend who checks his sugars before and after every meal and always eats 3 meals a day at the exact same time every day. To the other extreme my mums colleges son was found in critical condition (keytones over 30) and died in hospital hours later within 2 weeks of moving out of his mums house, so that's a horror story that terrifies me as, if we ever get to that point in our relationship, I'd like him to move out of his mums house and start a life with me, what if i come home from work one day and find him in the same condition? Hes not consistently eating 3 meals a day, which is probably my fault because i've grown accustomed to only having brunch and supper. He usually injects after meals but this is mainly guess work as he rarely checks his sugars.
What do you mean by bolus? And how does hyper result in hypo?

 

[GlucoseGuardian]

Using guesswork to calculate insulin is a bit dodgy if bg levels are not ok. Does he know about insulin to carb ratios at all or done a DAFNE course?

Whats a dafne course and how do i sign up?

 

[therower]

Whats a dafne course and how do i sign up?

Dosage Adjustment For Normal Eating. This course is not available everywhere but where it is you would need to put forward by a DSN , consultant or GP. It is not an online course. It requires a week long attendance ( 5 separate days over 5 weeks are possible). Course usually run 5/6 times a year in most areas that offer DAFNE. Similar course are available in parts of the country but never being on one of these courses I can't really comment on them.

 

[TheBigNewt]

I have another t1 friend who checks his sugars before and after every meal and always eats 3 meals a day at the exact same time every day. To the other extreme my mums colleges son was found in critical condition (keytones over 30) and died in hospital hours later within 2 weeks of moving out of his mums house, so that's a horror story that terrifies me as, if we ever get to that point in our relationship, I'd like him to move out of his mums house and start a life with me, what if i come home from work one day and find him in the same condition? Hes not consistently eating 3 meals a day, which is probably my fault because i've grown accustomed to only having brunch and supper. He usually injects after meals but this is mainly guess work as he rarely checks his sugars.
What do you mean by bolus? And how does hyper result in hypo?

"Bolus" is an injection of the fast acting insulin, usually Novorapid there. A hyper can result in a hypo if the person injects too much Novorapid (bolus) to correct for a high sugar reading. IMO your boyfriend should check his blood sugars when he gets up, before each meal, and at bedtime consistently. It really helps to eat similar calorie meals (esp the amt of carbs) at similar times. I don't think it matters if you eat 2 or 3. I usually eat three on my 4 work days and two on my 3 off days. I don't think it's that unusual to "guess" how much insulin to take when you eat a lot of that comes with experience. I know, a lot of people count carbs and use a certain ratio, but I more or less did it from experience for probably 30 years and maintained really good control. BUT, I always checked my sugar before I ate to see where I was starting out.

 

[GlucoseGuardian]

As the mother of a type 1 (so a glucoseguardian i guess) i can pick up the school bit. She hasnt had any stigma as the situation was explained to the class by the childrens DSN who also trained the teachers and teaching assistants. One of the TAs did some more reading up on the subject and has downloaded some additional resources from the website.
I dont know why you would need an insulin card to walk into any pharmacy as we get it supplied via the gp. If you run out chemists can issue emergency supplies (not nhs) or 111 will issue scripts. In order for such a scheme to run there would need to be someone paying the bill at the other end so it would cost admin money to set up the scheme even if the insulin cost the same as a gp supply.
We have been told not to test ketones unless bloods above 15 - do you think that original blood test was correct? Its odd to have dka with normal sugars. Maybe you need a new meter or a callibration?

Are you in the UK? I wasnt given a timeframe on when this incident happened perhaps the DSN thing was introduced afterwards?
GPs are open 9-5 and he works 7-5 so its not really an option for him to have to repeatedly go to the gp everytime he runs out of something, I feel like once you have the diagnosis you should be able to pop to the nearest pharmacy as and when you please to get whatever you need.
The test may have been wrong, how can he get a new machine/calibrate it? When we were at the hospital we asked for more keytone strips and they said they didnt supply the ones that fitted in his outdated machine and he'd have to go to his gp, which would require taking time off work and his boss was angry enough about him taking a day off for his dka, saying he wasnt allowed another sick day for at least six months (which is definitely illegal but I didnt want to anger her more by telling him to point this out) The doctors also said his dka was causes by his untreated chest infection and its common for diabetics to go into dka when they're ill?

 

[TheBigNewt]

The doctors also said his dka was causes by his untreated chest infection and its common for diabetics to go into dka when they're ill?

DKA is pretty unusual if you're taking insulin at all. I've never had it in over 30 yrs. I've never tested for ketones either, we don't do that in the US at least I've never heard about it and I'm a physician. If we suspect DKA we do a serum chemistry panel and an arterial blood gas. When we see it in ED their blood sugar is usually around 30.

 

[scotteric]

You can buy some insulins in the US without a prescription. I don't think you can buy the newer brand name ones like Lantus and Novolog, just the older "generics" like NPH and regular though. Nobody's gonna want to buy those if they aren't diabetic. But you can't buy the needles without a prescription which I think is pretty lame. I know, drug addicts. Who cares about them and they're gonna get needles if they can get heroin. Better to use clean ones right?

Yep, my brother's pump broke when we were in the States once, and being a naive Canadian I assumed we could just walk into a pharmacy and buy Lantus and syringes. We got both eventually, it just required a $1000 walk-in clinic visit for an Rx!

 

[scotteric]

I have another t1 friend who checks his sugars before and after every meal and always eats 3 meals a day at the exact same time every day. To the other extreme my mums colleges son was found in critical condition (keytones over 30) and died in hospital hours later within 2 weeks of moving out of his mums house, so that's a horror story that terrifies me as, if we ever get to that point in our relationship, I'd like him to move out of his mums house and start a life with me, what if i come home from work one day and find him in the same condition? Hes not consistently eating 3 meals a day, which is probably my fault because i've grown accustomed to only having brunch and supper. He usually injects after meals but this is mainly guess work as he rarely checks his sugars.
What do you mean by bolus? And how does hyper result in hypo?

It shouldn't matter how many meals you eat, or even if you eat at all, IF the basal dose is properly adjusted. The idea is supposed to be basal keeps you steady when not eating and to "bolus" for meals by taking a dose of rapid-acting insulin calculated according to the carbs in a meal before eating. Taking insulin after eating is a recipe for failure. By that time your blood sugar has already started rising and is much harder to bring back down than if the insulin is in your system before eating.

 

[GlucoseGuardian]

"Bolus" is an injection of the fast acting insulin, usually Novorapid there. A hyper can result in a hypo if the person injects too much Novorapid (bolus) to correct for a high sugar reading. IMO your boyfriend should check his blood sugars when he gets up, before each meal, and at bedtime consistently. It really helps to eat similar calorie meals (esp the amt of carbs) at similar times. I don't think it matters if you eat 2 or 3. I usually eat three on my 4 work days and two on my 3 off days. I don't think it's that unusual to "guess" how much insulin to take when you eat a lot of that comes with experience. I know, a lot of people count carbs and use a certain ratio, but I more or less did it from experience for probably 30 years and maintained really good control. BUT, I always checked my sugar before I ate to see where I was starting out.

Just checked the fridge and the orange one he takes after meals is called novorapid, never heard the term bolus though i googled it and it said it was a ball of partially chewed food or a large pill used in veterinary medicine? I guess this is why i tend to go to the library over using google haha
I feel like he is quite consistent in the calories per meal thing? Like we've had a mcdonalds breakfast every sunday morning since he's been spending his weekends here and we always order 2 double sausage mcmuffins and 4 hash browns, then in the evening we always go to the same pub where i'm in a competative poker league and he always orders the serlion steak. So maybe he knows exactly how much insulin to take after these meals? wouldnt know what hes eating during the week because i only see him on weekends but from what i can understand he skips breakfast prepares his own lunch the night before work and then eats whatever-mummy's-cooked in the evenings. He carries dextrose pills though but they dont seem to work? the other day his meter just read "low" meaning his sugars were less than 1, then he took 4 dextrose pills to correct and an hour later his sugars were 1.8? This was the day he was suffering blurred vision, which he says has never happened before, has this happened to you when your sugars have been low? His vision returned to normal when his sugars did.

 

[GlucoseGuardian]

It shouldn't matter how many meals you eat, or even if you eat at all, IF the basal dose is properly adjusted. The idea is supposed to be basal keeps you steady when not eating and to "bolus" for meals by taking a dose of rapid-acting insulin calculated according to the carbs in a meal before eating. Taking insulin after eating is a recipe for failure. By that time your blood sugar has already started rising and is much harder to bring back down than if the insulin is in your system before eating.

How do I convince him to take his insulin before meals instead of after? I dont want to be all like "i'm so concerned for you that i joined a diabetics forum and talked about you behind your back and this is the advice i've received" But if that's what it takes I'll have to do the whole crazy/obsessive girlfriend thing I guess? He was angry at me for calling my sister, a qualified optometrist who literally had to write a 3000 word essay on how diabetes effects eyesight 2 years ago, regarding his blurred vision, how is he going to react to me posting about him a public forum that anyone can see?

 

[TheBigNewt]

. He carries dextrose pills though but they dont seem to work? the other day his meter just read "low" meaning his sugars were less than 1, then he took 4 dextrose pills to correct and an hour later his sugars were 1.8? This was the day he was suffering blurred vision, which he says has never happened before, has this happened to you when your sugars have been low? His vision returned to normal when his sugars did.

I often see double when I'm low. In fact if I ever do see double I'll assume I'm low and eat sweets, it doesn't happen very often. If his sugar read "Low" then 4 dextrose pill won't work for long. That's probably about 100 calories which gets eaten up fast. You get low because there's too much insulin on board, and 4 pills won't do it. You need to EAT something after you correct most times. Many times I take my "bolus" insulin right after I eat. Especially eating out, I won't know precisely what they'll bring and what I'll eat, so if I bolus ahead of time and don't eat as much as I thought I'd take too much. I don't think it makes that much difference if you "pre bolus" which is popular in this forum. It's OK as long as you're sure what your gonna eat.

 

[GlucoseGuardian]

You can buy some insulins in the US without a prescription. I don't think you can buy the newer brand name ones like Lantus and Novolog, just the older "generics" like NPH and regular though. Nobody's gonna want to buy those if they aren't diabetic. But you can't buy the needles without a prescription which I think is pretty lame. I know, drug addicts. Who cares about them and they're gonna get needles if they can get heroin. Better to use clean ones right?

Ahh its very different in the UK, you can walk into any pharmacy and get a pack of 1ml needles for free (but you have to have a prescription for the needles used for his novorapid pen because logic ¬.¬), this was introduced to combat the high hepititus/hiv rates in heroin addicts, you are also paid actual money to return the used needles to the pharmacy so they can be properly disposed of.. This caused me, as a teenager, to frequent known heroin-junkie hang-outs and collect needles from the floor in order to make money, as well as asking for needles myself and basically selling them back, at the time i felt like an entrepreneur but now its like dude that's some f*cked up sh*t I could have caught something myself, I didnt even wear gloves to pick them up..

 

[TheBigNewt]

Yeah like you can use the pen needles for anything else. Stupid. I pay for all my strips and needles myself, insurance doesn't cover it. They don't cost me much.

 

[Rokaab]

GPs are open 9-5 and he works 7-5 so its not really an option for him to have to repeatedly go to the gp everytime he runs out of something, I feel like once you have the diagnosis you should be able to pop to the nearest pharmacy as and when you please to get whatever you need.

That's what repeat prescriptions are for, for some surgeries you can do it online, some you have to drop in a repeat prescription form - depends on the surgery, that how I do it when I need more, don't go to see the doc just cos I need more meds, I'd die by the time I got an appointment

He carries dextrose pills though but they dont seem to work? the other day his meter just read "low" meaning his sugars were less than 1, then he took 4 dextrose pills to correct and an hour later his sugars were 1.8? This was the day he was suffering blurred vision, which he says has never happened before, has this happened to you when your sugars have been low? His vision returned to normal when his sugars did.

Hypos can cause all sorts of weird stuff to happen, sometimes I've had double-vision, my muscle co-ordination sometimes goes (so I can't walk properly), sometimes I get the shakes, sometimes it feels like I'm trapped in a never ending nightmare knowing I need help but not knowing how to get it (like not remembering how to use the phone to call a friend for help), sometimes I start crying for no reason, sometimes I've just drifted into unconsciousness, sometimes I've fought off people trying to help (and I'm normally the most passive person ever) - so yeah - all sorts of weird stuff can happen.

 

[GlucoseGuardian]

Yeah like you can use the pen needles for anything else. Stupid. I pay for all my strips and needles myself, insurance doesn't cover it. They don't cost me much.

'merica ¬_¬ that is absolutely disgusting that you are paying for insurance that doesnt cover your basic health needs.. didnt obama care fix that? Or has trump abolished it? Even my basic health needs are covered under a free prescription without me paying for insurance and I only have bipolar disorder which isnt remotely life threatening? (unless you count the whole suicide rate thing)

 

[TheBigNewt]

'merica ¬_¬ that is absolutely disgusting that you are paying for insurance that doesnt cover your basic health needs.. didnt obama care fix that? Or has trump abolished it? Even my basic health needs are covered under a free prescription without me paying for insurance and I only have bipolar disorder which isnt remotely life threatening? (unless you count the whole suicide rate thing)

My employer ( a VA hospital) pays for 3/4 or our insurance. Generic Lantus costs me about $10/pen now. Novorapid costs me $50/pen. Brand name drugs we get raped on, generics not so much. I don't even bother trying to get strips with insurance, they're cheap online. You can buy 'em at Walmart for $17/100 strips. Obama didn't fix anything with medication, it's probably worse. Trump would probably help but the drug lobby won't let him.

 

[lucylocket61]

Whats a dafne course and how do i sign up?

With respect, I think you are taking on far too much responsibility for your boyfriends condition and setting yourself up for getting blamed when it all goes wrong.

Its his condition, not yours. Yes, support him, but not the extent you seem to be being made to do by gaslighting from him. He is using you as a scapegoat for his failure to treat his own condition. Look up scapegoating if its a term you are not familiar with.

Not your circus, not your monkeys.

So many alarm bells going off about this and your welfare.

 

[GlucoseGuardian]

That's what repeat prescriptions are for, for some surgeries you can do it online, some you have to drop in a repeat prescription form - depends on the surgery, that how I do it when I need more, don't go to see the doc just cos I need more meds, I'd die by the time I got an appointment

Hypos can cause all sorts of weird stuff to happen, sometimes I've had double-vision, my muscle co-ordination sometimes goes (so I can't walk properly), sometimes I get the shakes, sometimes it feels like I'm trapped in a never ending nightmare knowing I need help but not knowing how to get it (like not remembering how to use the phone to call a friend for help), sometimes I start crying for no reason, sometimes I've just drifted into unconsciousness, sometimes I've fought off people trying to help (and I'm normally the most passive person ever) - so yeah - all sorts of weird stuff can happen.

Sorry but i noticed your also a coeliac? diabetes and coeliac disease arent usually things that pair up and its considerably unfortunate if they do, coincidently my boyfriend is also both a t1 diabetic and a coeliac, gluten free food is expensive, my monthly food bill has increased by almost £100 since I've been dating him.. not many restuarants have gluten free options in my area do you have a particular favourite big-chain resturant thats likely to be in the city I live in? The last one I found with a gluten free menu was handmade burger co and I refused to show him how much the bill I picked up was because omg how guilty he would have felt if he new I'd spent over £50 on two drinks two starters and two burgers.. Also do you know any shops that sell gluten free food at reasonable prices? My coeliac friend whom at one point in her life lived in the same city as me suggested morrisons but they dont deliver and I feel like theres a limited amount of shopping we'd be able to carry 0.6 miles? Thats why i do the monthly asda shop its litterally delivered 10 feet from my fridge

Also I gave him a coeliac attack once, I made him a chilli con carne.. when he started having the attack I rushed into the kitchen to check all the ingredients I'd used.. The culprit? Uncle bens rice.. How the F*ck does gluten get into rice its literally picked off a plant not man made?

 

[lucylocket61]

diabetes and coeliac disease arent usually things that pair up

yes, yes they are: https://www.glutenfreeliving.com/gluten-free/celiac-disease/celiac-disease-and-diabetes/

two of my type 1 friends are celiac

 

[GlucoseGuardian]

With respect, I think you are taking on far too much responsibility for your boyfriends condition and setting yourself up for getting blamed when it all goes wrong.

Its his condition, not yours. Yes, support him, but not the extent you seem to be being made to do by gaslighting from him. He is using you as a scapegoat for his failure to treat his own condition. Look up scapegoating if its a term you are not familiar with.

Not your circus, not your monkeys.

So many alarm bells going off about this and your welfare.

I completely understood the scapegoat thing but not got a clue what 'gaslighting' is

I do feel that whilst concious he is completely responsible for his own illness but when hes unconcious that does fall on me or whomevers with him at the time. I also feel that if he did ever move in with me and we started a life together and he died on my watch then his family would never forgive me. Which is extremely likely, i know we're only in our early 20s now, but the life expectancy of a t1 diabetic is considerably lower than my life expectancy so its an inevitability that, if we make it that far, he will die in my arms, or worse, whilst i'm at work.