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New partner is type 1 diabetic, need advice

Discussion in 'Type 1 Diabetes' started by GlucoseGuardian, Jan 24, 2018.

  1. GlucoseGuardian

    GlucoseGuardian Friend · Member

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    In the 3 months I've been dating a type one diabetic he's been admitted to hospital twice, first time was due to low sugars and the second was due to high ketones. I think my main concern is that there's going to be a point, yet again, where I'm responsible for his life? Since his last hospital admission I carry around glucogel, I've dedicated a draw for storing his test strips/needles/etc, and have spare insulin in my fridge but I'm not sure what else I can do? When his ketones were high he didnt have any ketone testing strips but his sugars were only 8.5 which i didnt see as a cause for concern, he was unconcious on my lap for a solid 20 minutes before I decided to call the non emergency medical helpline who instructed me to take him to hospital immediately, I feel a large amount of guilt for how slowly I acted, I initially thought he was taking a nap because we'd been up late the night before, until i noticed his temperature. He got in trouble at work because they kept him over night in the hospital, which i feel wouldnt have been necessary if i'd acted sooner.

    As a scientist I'm quite interested in 't1 diabetic intuition'. The next time he went to inject after the hospital admission I was like "how do you know you need 18 units if you haven't even tested your sugars, there's definitely a formula for how many units you need in one of my second year text books." We tested his sugars, I did the math, and surely enough he needed exactly 18 units. How is this possible? Does it get to a point where you've been self managing for so long that you can guess how many units you need that accurately?

    As a mental health professional I'm also interested in the correlation between t1 diabetes and mental health problems and would like to hear stories about how your condition has effected your mental health or if you don't think your mental health problems, if any, are related to your diabetes. I.e there's another causal factor. I'm also interested in the stigma that comes with diabettes being represented in the media as something that happens to people who eat too much junk food. Also how under educated teachers are about diabetes, i heard one example of a newly diagnosed child being pelted with sugar cubes at school because, when asked by another child what was wrong with him, the teacher declared to the entire class that he was basically allergic to sugar? I understand it can be difficult explaining something so complicated to 5 year olds but the teacher could have come up with something better than that surely?

    I live in the UK and am currently in the process of planning a presentation for my local MP to introduce a 'diabetes card.' whereby any owner of this card can walk into any pharmacy and get free insulin, insulin's already free in England but you need a prescription, so this literally wouldn't cost the tax payer anything. How do you feel about the introduction of this card?

    I'm asking for advice on how to help him manage his condition in a caring, loving way, without being arrogant/patronising/controlling. A couple of days ago his sugars were low and he started suffering blurred vision and I immediately got in contact with my younger sister, who's an optometrist, for advice and even secured him an emergency appointment at the opticians. He was angry with me for interfering and accused me of being too dramatic.

    Also "glucose guardian" is apparently the politically correct term for "Sugar mummy" which we both found hilarious, so yeah that's my nickname on here.
     
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  2. TheBigNewt

    TheBigNewt Type 1 · Well-Known Member

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    He would likely benefit from a CGM, I think the Freestyle Libre is available from your NHS there. Sounds like he's pretty loose with taking a bunch of insulin and relying on you to handle the hypos. How did he do before you became involved? How long has he had diabetes? How many hypos did he need emergency treatment for before you, and how many times did he end up in the hospital? We all get low at times, but it's a question of how often and how low.
     
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  3. scotteric

    scotteric Type 1 · Well-Known Member

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    You're right, 8.5 is only slightly high and shouldn't be dangerous on its own. I can't think of too many days where I don't have a blood sugar in the 8s, 9s or even 10s no matter how hard I try, and while not ideal it doesn't cause any short term problems. There's something more going on here.
     
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  4. scotteric

    scotteric Type 1 · Well-Known Member

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    Are you sure his basal insulin needs are being met properly? I think a lot of people aren't really given good information about how basal insulins work, and just told to inject a specified dose of Lantus or Levemir once a day without modification. These insulins often don't last 24 hours and it's hard to tailor them to the body's varying insulin needs without a lot of thought and adjustment. I tried shots after pumping for 11 years and could never get them to work as well as my pump, which I've recently gone back to. If the basal insulin dose isn't adequate then everything else goes out the window. Some basal insulins have pronounced peaks which can cause serious hypos at times as well. Textbooks and the pharmaceutical company literature might say that Lantus, Levemir and Tresiba are all peakless, but this isn't true in my experience and the peaks need to be accounted for or lows will happen.
     
  5. bobcurly

    bobcurly Type 1 · Well-Known Member

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    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?
     
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  6. tim2000s

    tim2000s Type 1 · Expert
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    Hi @GlucoseGuardian and welcome to the forum. As @TheBigNewt mentions, ending up low enough to result in needing emergency assistance is not a good state (and is usually symptomatic of other issues, possibly lack of hypo awareness or not well balanced glucose levels due to incorrect insulin amounts). Secondly, having dangerously high ketones at a glucose level of 8.5 mmol/l is very unusual, even after fasting or a night drinking. It tends to suggest that either the blood glucose meter was wrong (check age of strips) or there are other underlying issues that need investigation (the usual ones include Thyroid).

    While the insulin card is a good idea, it's not really all that necessary. Most pharmacies will provide emergency insulin whilst arranging for a prescription from your doctor, and in all fairness, I don't think it's fair to add additional bureaucracy and cost to the NHS for something that you don't really need.

    It does sound as though your partner may need some encouragement in managing themselves though, as ending up in hospital twice in three months really shouldn't be the norm.
     
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  7. iHs

    iHs · Well-Known Member

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    Testing bg levels pre meal and post meal is the key to success using whatever insulin regime. That way either carb can be adjusted or insulin. Lots of my hypos were stopped from getting bad simply by post meal testing and eating some carb about 1hr before the hypo feeling took hold. How many times per day does your boyfriend bg test?
     
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  8. GlucoseGuardian

    GlucoseGuardian Friend · Member

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    He claims to only be admitted to hospital about once a year, since he was diagnosed at the age of 6 and is now almost 21. In order to qualify for a cgm you need 2 or more hypo hospital admissions in a year. I wasnt in the same city as him when he had his hypo as he works about 40 miles from where i work. It was within the first month of our relationship, I got a text saying "I f*cked up, boss is taking me to hospital" then he didnt respond for 2 hours. The demons in my brain ate away at me and I may have used an ever so slightly illegal method to obtain confidential patient information, before sending him a passive aggressive "you were discharged 20 minutes ago thank you for the update" to which he was absolutely thrilled! Completely flattered by how much I cared! He changed, it went from a casual thing to me being presented with flowers and jewellery! From mainly hanging out in sports bars to having expensive meals in nice restaurants! Then about a month later he deliberately went hypo because he thought I "needed a distraction" from dwelling on an argument I'd had with a family member. Which I class as emotional blackmail because he was basically saying "cheer up or i'll kill myself." Is this a thing diabetics do? If he does it again its definitely over.
     
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  9. GlucoseGuardian

    GlucoseGuardian Friend · Member

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    He takes his basal insulin at night, currently 48 units, but adjusts this himself depending on his sugar levels in the morning. he also has fast acting insulin which he injects whenever his sugars are high. why do peaks cause lows? I remember the night before he had his hypo his sugars were in the 18-30 range?
     
  10. GlucoseGuardian

    GlucoseGuardian Friend · Member

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    As I said insulin is already free so it wouldnt cost the nhs any more money, I did toy with the idea of charging people £1 for the card to cover the cost it would take to print some words on a piece of plastic.

    He stopped going for his medical exams two years ago because he found them patronising, I'm not a diabetic and i still go for blood tests every three months to check I'm not dying because its a free service! why not! I made this point the first time i met his family and he accused us of ganging up on him! He agreed to go for a blood test but hasn't yet as far as I'm aware. Thyroid function can be tested with a blood test, correct?
     
  11. iHs

    iHs · Well-Known Member

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    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.
     
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  12. GlucoseGuardian

    GlucoseGuardian Friend · Member

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    He does it every morning before breakfast and has started doing it a few times a day since his last hospital admission but i swear most of his insulin doses are just guess work which i find concerning even though hes never been wrong appart from that one hypo, but one hypo is enough for you to DIE so yeah I want to encourage him to check more frequently without coming accross as controlling/patronising. How often would you recommend testing?
     
  13. Rokaab

    Rokaab Type 1 · Well-Known Member

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    No, its not something diabetics do, personally if I knew I would never have a hypo again (without being sky-high all the time), I would be absolutely thrilled to bits, I would be celebrating like there was no tomorrow. Hypo's are not fun, and they can be absolutely terrifying.
     
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  14. tim2000s

    tim2000s Type 1 · Expert
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    Watch out with someone who is deliberately manipulating glucose levels to have an effect on you. That is gaslighting type behaviour and extremely controlling. I have a friend who suffered a T1 boyfriend who did that and their relationship was no fun. Needless to say they are no longer together.

    As we’ve already said, he’s playing fast and loose with his T1. Rollercoasters do our bodies no good and being hospitalised even once a year is not good. How many times have ambulances been called out for him?
     
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  15. therower

    therower Type 1 · Well-Known Member

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    Welcome to the forum @GlucoseGuardian . Apologies if what I say is out of order ( I have a knack ).
    From things you've said so far it appears to me that you have found yourself a diabetic boyfriend. Problem is he doesn't own his diabetes, if anything it owns him. Your boyfriend knows this, he knows he isn't in control. It's not necessarily his fault, diabetes is all consuming and can be an extreme condition to stay on top of.
    My fear is he sees you as someone he can off load his diabetes on to. This would obviously take a lot of pressure off of him and let him be able to lay failures and shortcomings elsewhere.
    He needs help and encouragement to control and master his diabetes but ultimately it has got to be his diabetes and no one else's.
    I'm sure that you are more than capable of being a great support to him. He's vey lucky to have someone who is prepared to help him.
    Good luck.
     
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  16. KK123

    KK123 Type 1 · Well-Known Member

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    Glucoseguardian, I'm not sure if you are suggesting that anyone with this 'card' should then be able to go randomly into a chemist and be given insulin?, it is a dangerous and controlled drug, there is NO way this would be appropriate or sanctioned. The whole point of a prescription (for certain drugs) is to regulate their use, I can imagine how criminals would seek to exploit the system you suggest.
     
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  17. scotteric

    scotteric Type 1 · Well-Known Member

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    Everyone is different, but 48 units is a lot of basal. It's possible he's just taking a massive dose which is bringing him back down from very high night numbers but also causing lows. I'm just speculating though as I'm not a medical professional and don't have a lot of information to go on. The point of basal insulin is to compensate for small amounts of glucose the liver releases and keep you steady when not eating. Peaks are a problem because they are periods when the basal insulin dose is stronger than the body needs and so lows happen. Pumps are a much more efficient treatment option since you can change the basal dose by the hour instead of one dose for the whole day, but they are not for everyone
     
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  18. scotteric

    scotteric Type 1 · Well-Known Member

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    You can buy any insulin over the counter in Canada without a prescription and I've never heard of any problems happening.
     
  19. iHs

    iHs · Well-Known Member

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    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?
     
  20. TheBigNewt

    TheBigNewt Type 1 · Well-Known Member

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    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?
     
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