New partner is type 1 diabetic, need advice

[DCUKMod]

Leicester, UK. I've lived here six, almost 7 years. the first two t1s i met were fellow students at UoL i met the first in 2011 and the second in 2015, considering i've probably met thousands of students in the five years I was studying this doesnt even border on statistically unlikely that two of them were t1, infact i find it more statistically interesting that they were both openly gay men, even my boyfriend is bicurious. my mothers, collegues,son i've never met but see his story as a complete horror story which no mother should ever have to go through. I've been working at a hospital for two years and, funnily enough, most patients that come in have something wrong with them so I was bound to come across one or two diabetics. the patient i was refering too is the only female t1 i've ever met and she was in her 60s which made me feel better about my boyfriends claims that he probably wont make it to 40.

I work in mental health and at a meeting today we were asked where we think the new funding should go, like what outreaches we could pursue, from the list we narrowed down I chose to pursue the effects of diabetes on mental health, my boss gave me this website and a phone number for a diabetes support group in leicester and gave me a week to provide a rationale for why our new funding should go into this area.

I find it interesting that most t1s have never met another t1? My boyfriend asked to see my t1 friends facebook profile last month which I thought was weird.. then a few minutes ago he text me saying 'i guess your talking to [t1 friends name] about your work assignment instead of me.' I told him earlier that, although it would be the truth, I can't argue that every diabetic i've met also suffers from depression, and i definitely can't therefore assume that diabetes causes depression! I didnt tell him I'd post on a forum but I did tell him I wanted to speak to at least 20 diabetics about their mental health experiences before I wrote my rationale. It could be a complete coincidence that all the diabetics I've met suffer from depression, why should we put money into this? It probably only stuck out to me as an interesting option because the man I'm in love with is a t1 diabetic so i had a personal interest! If you don't think government funding should go into the mental health care of diabetics then please let me know. what areas of mental health which arent currently covered by the nhs would you like to see funded? the other two things i opted for were autism, and transgender but i've already wrote about those topics before so its easier.

Interesting. I don't live in the city, but I do live in Leicestershire. May I ask which support group your manager pointed you to. I know of a couple, but it's always good to know where local resources are.

If your boyfriend is also living in Leicester, then he is, in my view, a lucky young man. The Leicester Diabetes Centre and the Research Centre associated with it are recognised and award winning places. The care, as I understand it, is very good.

The Research Centre, as you would expect is looking for positive ways forwards for people living, of all types, with diabetes, including research into mental wellbeing and the associations between mental health and diabetes, because there can be some, for a decent proportion of those impacted by diabetes, at some point in their diagnosis.

 

[Dark Horse]

Giving dextrose/sweets/sugary drinks is only the first part of treating a hypo. They're chosen because they're absorbed rapidly so they can prevent someone going unconscious and 'revive' their mental processing enough for them to follow the next steps in treating the hypo. More sugar may be needed, depending on blood sugar levels, and should be followed with a carbohydrate snack such as toast or biscuits (gluten-free for people with coeliac disease). It's worth reading (and maybe printing out) the NHS advice for treating hypos, including those where the patient is unconscious:- https://www.nhs.uk/conditions/low-blood-sugar-hypoglycaemia/

Something like 5% of people with type 1 diabetes also have coeliac disease. They are both auto-immune diseases and it is known that auto-immune diseases overlap:-
http://onlinelibrary.wiley.com/doi/10.1111/apt.12973/full
Auto-immune thyroid disease is also more common amongst people with type 1 diabetes:- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4971288/
CoeliacUK gives a lot of useful information about coeliac disease, including advice about eating out:- https://www.coeliac.org.uk/gluten-free-diet-and-lifestyle/eating-out/

Hypos and DKA are not the only problems of poorly-controlled diabetes. In the longer term, high blood glucose levels can lead to complications such as diabetic retinopathy (which can lead to vision loss), diabetic nephropathy (which can lead to kidney failure) and diabetic neuropathy (which can lead to pain, numbness, gastro-intestinal symptoms, erectile dysfuntion etc.). Having a regular HbA1c test at the GP gives feedback about how good glucose control has been over the last 2-3 months.

Annual screening for diabetic retinopathy is important as treatment is most effective in the early stages when there are no symptoms.

 

[NoKindOfSusie]

Who told you that?

Hypos and DKA are not the only problems of poorly-controlled diabetes. In the longer term, high blood glucose levels can lead to complications such as diabetic retinopathy (which can lead to vision loss), diabetic nephropathy (which can lead to kidney failure) and diabetic neuropathy (which can lead to pain, numbness, gastro-intestinal symptoms, erectile dysfuntion etc.).

 

[EllieM]

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.

I'd be very very concerned about someone deliberately giving themself a hypo. No T1 in their right mind would willingly suffer a hypo, they are the worst things known to diabetic kind in my opinion. (OK, other than various diabetic complications which I luckily haven't (yet) got.)

I've been diabetic for 47 years and never had a DKA. I've also only been to casualty for a hypo three times, (twice when pregnant), though my partner has helped with hypos a few times. My husband has been a wonderful support with my diabetes but I would never expect him to suggest my insulin doses, and as a responsible diabetic I always carry my own sugar. He does help by cooking diabetic friendly meals (cauliflower rice, yum), but I'd never expect him to count carbs for me. And yes, I'm probably/possibly going to die a little younger than him (I'm hoping for 80+ rather than 90+ though of course there are plenty of horrible non-diabetic related illnesses which may make that very optimistic), but I'm not envisaging years of him being my old age carer. Actually, given the fact that he has a family history of dementia I may well end up being the carer, though his lifestyle choices do mitigate his risk.

Does your partner drive? If he does he should be doing a blood test before he gets in the car ...

Many 21 year old diabetics have gone through a bad patch where they ignore their diabetes for a few years, leading a young adult lifestyle and having fun doesn't always fit in well with monitoring what you eat and inject. Most of us eventually end up taking more care of ourselves because we find life easier and generally feel better when we do the blood tests and balance our food/activity to what we inject. Similarly many (non-diabetic) 21 year olds binge on alcohol - usually by the time they're 25 they've worked out that life is too short to spend days hung over.

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.

Yes, I would have been annoyed about that. It's one of the many possible temporary symptoms of hypoglycaemia and I wouldn't see an optometrist for it.

You're not your partner's parent and you can't manage his diabetes for him. He's still very young, and will hopefully come to terms with managing it himself before he gets much older.

Good luck.

 

[Dark Horse]

@NoKindOfSusie Note the important modifier, 'poorly'. Years ago, the importance of good diabetic control was less well known and anyway it was much more difficult to inject and test. As knowledge and technology improves, and as people improve their diabetic control, the risk of complications is getting smaller and smaller. At the same time, treatments, for when complications do occur, are getting better and better.


Many people with type 1 live to a ripe old age. Try reading this story:- https://www.diabetes.org.uk/your-st...hasnt-stopped-me-doing-anything-ive-wanted-to


It's quite normal to go through a 'grieving' stage when diagnosed with a long-term condition and that can often be accompanied by anger and/or depression. Managing type 1 diabetes can seem quite overwhelming to someone who is recently diagnosed but it gets easier over time. There are plenty of people on this forum who have the experience of living with type 1 diabetes for many years and would be happy to give advice regarding any aspects of day-to-day management. There are also local support groups around the country (talking face-to-face is sometimes better):- https://www.diabetes.org.uk/how_we_help/local_support_groups

 

[Deleted Account]

Note the important modifier, 'poorly'.

I would also add to note the word "can" (as in "can lead to complications").
This is not the same as "will lead to complications".

 

[porl69]

Interesting read. Keeping an eye on this one

 

[lucylocket61]

hmm.. one of my patients at the hospital is also a t1 and coeliac.. however I can't find any actual evidence of this correlation, the website you shared didnt have any references from scientific literature which is strange considering the author claimed to be a doctor and would therefore have had to use references to scientific literature when referring to anything that he was claiming to be a fact, even undergraduates and junior doctors are required to do this. Even wikipedia uses the referencing system ***. I feel like this is probably a result of the gluten free food industry realising they werent making a decent profit off the coeliacs and are therefore convincing people that being gluten free is has health benefits? A primary school near me is introducing gluten free only meals to the children because they've been convinced gluten causes autisim? That is basic high school biology level stuff right there, gluten can't pass the blood brain barrier, full stop, so how can it possibly affect the brain? I've managed to find one paper backing this claim up in a seriously low rated journal where their argument is something analogous too "all houses that have caught on fire contained a toilet, therefore toilets cause house fires"

in short not convinced but i'd love for you to attempt to change my mind.

but anyway, gluten free restaurants? shops that sell gluten free food at a reasonable price?

Just realised, you are a scientist working in a hospital, right? so medical research and googling for 'gaslighting' should be right up your street ; )

 

[lucylocket61]

Well, I was recently (september) told that I am going to be sick forever, never get well, die young, risk horrible complications and in the meantime it's going to make my life hell with drugs and testing every couple of hours to the point where it makes career and social life almost impossible.

If that were true than yes, i would agree with you. But its not. Whoever told you that is wrong. Multiple long term type 1 diabetics have told you that what you have been told is wrong. You still dont say who told you that, if it was a medical person working in the field of diabetes they need sacking.

I think your depression is giving you tunnel vision. I know of several long term type 1s Male and female. The older ones have had it for over 40 years, one has had it for over 50 years. They have a few minor complications, they are all doing what they can to get good control. Its the control which affects the outcome. I know a couple of youngsters too. The female has some struggles with control due to her menstrual cycle and endometriosis. The male one is still an adolescent, so goes up and down, but is maintaining control most of the time. They all have full lives.

 

[donnellysdogs]

If that were true than yes, i would agree with you. But its not. Whoever told you that is wrong. Multiple long term type 1 diabetics have told you that what you have been told is wrong. You still dont say who told you that, if it was a medical person working in the field of diabetes they need sacking.

I think your depression is giving you tunnel vision. I know of several long term type 1s Male and female. The older ones have had it for over 40 years, one has had it for over 50 years. They have a few minor complications, they are all doing what they can to get good control. Its the control which affects the outcome. I know a couple of youngsters too. The female has some struggles with control due to her menstrual cycle and endometriosis. The male one is still an adolescent, so goes up and down, but is maintaining control most of the time. They all have full lives.

Nokindofsusie has some quite strong feelings on basically diabetes T1 is the end of normality.... we have had other posts mentioning this doom and gloom and it doesnt matter how many T1's tell her to live and boy, we've had a great life and healthy and enjoying ourselves (30+ years for me), @NoKindOfSusie does not listen and still continues to write of woes, which jyst arent necessarily true...

Life is for making the most of... blimey... there is a lot worse illnesses out there that arent manageable....

 

[Natasha23184]

I've had a pump now for 5 years. My blood sugar control is the best it's ever been in 35 year sdue to this and it was stressed to me that the pump is funded for you to improve your blood sugar control. However I am now constantly anxious about having a hypo, this having been exacerbated by a need to visit A&E recently due to a night time hypo. So I don't feel I have depression (I am a mental health professional) but my anxiety levels have risen greatly. There is a medtronic pump that works with their cgm and will shut off the pump if the alarms don't wake you. My nurse has applied for funding however I have no idea if I will get it or what I will do if I don't so at the moment my anxiety is at an all time high.

 

[NoKindOfSusie]

If that were true than yes, i would agree with you. But its not. Whoever told you that is wrong.

Every person I have spoken to and everything I have read basically boils down to what I said.

It is first used as a scare tactic to make you follow the rules. I didn't really need the scare tactics, I have been about as scared as it is possible to be for about four months continuously but I think they sort of enjoy it, they are used to dealing with 10 year old kids. Then they just reinforce it and reinforce it, to make you follow the rules. They are not making it up, the evidence shows it. I can go and look it up if you want, do you want me to copy and paste a load of wikipedia references, or are we all grown ups who can deal with reality?

Are there any actual medically qualified people on this forum or are we just a group of random people speculating? I like facts with evidence based medicine behind them, not speculation and not someone telling me it'll be fine to make me feel better.

 

[Jessitalia]

Hi Glucose Guardian, I used to live in Scotland and when visited my parents in England I actually forgot to take insulin (it’s hard to explain but cos it’s always with me, I genuinely forgot). England and Scotland have separate and different NHSs. Anyway, the English pharmacist just rang my Scottish GP and it was fine. So the insulin card isn’t really needed.

Regarding your boyfriend- be careful. You’re his girlfriend, not his guardian. His Diabetes is his responsibility. I test before every meal and whenever I feel “strange”. He needs to go to an appointment and be honest that he foesnt test but just guesses. I’m sure they’ll have solutions.

 

[Jaylee]

I've had a pump now for 5 years. My blood sugar control is the best it's ever been in 35 year sdue to this and it was stressed to me that the pump is funded for you to improve your blood sugar control. However I am now constantly anxious about having a hypo, this having been exacerbated by a need to visit A&E recently due to a night time hypo. So I don't feel I have depression (I am a mental health professional) but my anxiety levels have risen greatly. There is a medtronic pump that works with their cgm and will shut off the pump if the alarms don't wake you. My nurse has applied for funding however I have no idea if I will get it or what I will do if I don't so at the moment my anxiety is at an all time high.

Hi Natasha,

Would you like me to move your post to it's own thread in the pump section?
You may have more productive responses to your particular query..

Regards,

J>

 

[Natasha23184]

Hi Natasha,

Would you like me to move your post to it's own thread in the pump section?
You may have more productive responses to your particular query..

Regards,

J>

Hi Jaylee,

Thanks I'm not really looking for anything for myself - I was responding to the OP diabetic/mental health query.

However if you feel it would be beneficial in other ways then please do.

Or pass me some anti anxiety meds

Thanks
Nat

 

[therower]

Ahhhhhhhh Wikipedia. The font of all knowledge.
@NoKindOfSusie . The only people you listen to are the people you want to hear.
You don't need to be medically qualified to live with diabetes, you only need to be diabetic.
Perhaps you would be better suited in finding a forum run solely by " medical experts " or just rely on Wikipedia and doomsday harbingers to live your diabetic life.
27 yrs ago diabetes was the best thing to happen to me. Please don't assume I'm a random speculator.

 

[Jaylee]

Hi Jaylee,

Thanks I'm not really looking for anything for myself - I was responding to the OP diabetic/mental health query.

However if you feel it would be beneficial in other ways then please do.

Or pass me some anti anxiety meds

Thanks
Nat

Anxiety meds? Now you know I can't do that.. You would need to see your HCPs.
I'm not a pumper..
I'm pretty relaxed where you wish your post.
What I will do for you is tag in @catapillar who may help you specifically regarding your hypo anxiety, then if you feel different regarding your own thread....? You know where I am!

 

[Jaylee]

GOOD EVENING DIABETNAM!!

Please stay on topic.. No derailment, no hyjacking!

It would be a shame to Napalm any of your subsiquent posts for the above.
Let's keep it a beautiful day on DCUK.
Thanks!

 

[Dark Horse]

Every person I have spoken to and everything I have read basically boils down to what I said.

It is first used as a scare tactic to make you follow the rules. I didn't really need the scare tactics, I have been about as scared as it is possible to be for about four months continuously but I think they sort of enjoy it, they are used to dealing with 10 year old kids. Then they just reinforce it and reinforce it, to make you follow the rules. They are not making it up, the evidence shows it. I can go and look it up if you want, do you want me to copy and paste a load of wikipedia references, or are we all grown ups who can deal with reality?

Are there any actual medically qualified people on this forum or are we just a group of random people speculating? I like facts with evidence based medicine behind them, not speculation and not someone telling me it'll be fine to make me feel better.

Here's some facts about diabetic retinopathy and sight-loss:-

Regarding incidence of sight-threatening retinopathy due to diabetic retinopathy, in 2015-2016 in England less than 3% of people screened that year required referral to ophthalmology. There they can be given treatment, if needed, to prevent sight-loss.

• 3,083,401 people were known to have diabetes
  
  
• 2,590,082 were offered eye screening
  
  
• 2, 144,007 actually had eye screening
  
  
• 0.35% were referred urgently to ophthalmology
  
  
• 2.45% were referred routinely to ophthalmology
  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5429356/

Regarding incidence of sight-loss due to diabetic retinopathy, in Wales less than 0.1% of people with diabetes received certification for sight-loss in 2015.

• 0.047% of people with diabetes received new certification of sight impairment (a fall of 43% since 2007)
  
  
• 0.016% of people with diabetes received new certification of severe sight impairment (a fall of 49% since 2007)
  http://bmjopen.bmj.com/content/7/7/e015024

(Rates are likely to be similar for England and Wales.)

Regarding the effect of blood glucose on retinopathy, good control reduces risk:-

• if diabetes is controlled (HbA1c less than about 53mmol/ l or 7% ) retinopathy may never develop, or develop very slowly
  
  
• if using insulin, good control is harder to achieve but if HbA1c is 53mmol/ l (7%), retinopathy develops at a much slower rate than someone whose level is 75mmol/ l (9.0%) .
  http://www.diabeticretinopathy.org.uk/prevention/hba1c_and_retinopathy.htm

 

[Scott-C]

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?

It's not really a guess as such. After a while, a T1 will have eaten so many meals and made so many decisions, some of them wrong, some of them right, about how much insulin to take for each type of meal, that we'll end up over the course of time just remembering that x units of insulin will cover a particular size and type of meal.

That way, while it might look like intuition, it's just really a case of recalling, yeah, last time I ate that, x units worked out ok.

I'm fairly adventurous with food, will have a go at anything (apart from tripe, yeuch!), but on a day to day level, there's about 10 or so meals I'll eat regularly (not because I feel limited in food options by T1, just because I happen to like them!), so it's not really that difficult to remember how much insulin is needed for each.

If I decide to try something different from the usual choices, there's usually enough of a similarity in the general make up to compare it to one of the more familiar ones to make a reasonable stab at it.

If I'm trying something totally new, then, yeah, I'll check out the carb content on the pack or Carbs & Cals, and do some sums, and file that away for future use.

Some non-T1s think that it's just a case of how much carb and how much insulin. There's a bit more to it than that, though. I'll use that as a starting point, but then I'll likely adjust the timing and dosage to take account of various factors, such as: meal gi; current bg level; whether that level is trending up or down or level and the rate of trend; amount of insulin still on board from an earlier shot; what I last ate and when; how active I've been in last few hours; how active I might be in the next few hours; general "responsiveness" to insulin over last day or two; whether I've got a cold or not; whether I'm reckoning on a snack an hour or two later.....

Some of those factors can be calculated spreadsheet style for in adjusting dose, and having a continuous glucose monitor trace is definitely handy, but some are more a sort of instinct/intuition/gut feel developed over the years.

Sooo, next time you see a T1 make what seems to be a random guess, there's a fair chance there's something like this going on!: