I’m type 1 diabetic AMA

[Moonicorn]

Not particularly unusual or interesting. But I’m quite a few years down the line now, and wondered if any parents of newly diagnosed kids wanted to ask anything - maybe things they don’t feel they can ask the doctors, or about the more ‘social’ side of the illness. Or just anyone who wants to know anything really!

I would rename it CRAP - completely restricted annoying pancreas!

One of the things that irritates me is other people during hypos. It’s such a routine occurrence in our house DH knows to throw a carton of juice and biscuit at me and leave me to it until I feel like joining him again

Other people are just annoying, either they act like I need an ambulance or they completely underestimate it (say we’re walking somewhere and I need to stop, they’ll be all ‘oh it’s not far, just another 15 minutes, hang in there’).

It’s hard to clarify that it’s ‘urgent’ but completely treatable as long as they let me stop right then and deal with it. My sisters are the worst, they get up in my face ‘OMG ARE YOU OKAY’ and talk at me at a thousand miles per hour. Not what you need when your head is spinning and you feel shaky.

Hats off to you as a parent - seriously, I said to DH last night being the parent of a small child with t1 is probably worse than actually having it. It must be awful watching your toddler go through that

I’m also very tall, 5’9! And my cousin who has been type 1 since she was 9 is about 5’6.

Out of interest other type 1s, are you fair haired? It’s anecdata but all the type 1s I know are fair and blue eyed, plus a diabetes nurse I know said the same!

I’m t1 but I have very dark hair as does my mum who also has dark hair, sorry! I was diagnosed 23 years ago aged 12.

There used to be a clinical trial running where you could have immediate family members tested for the autoantibodies, dd had it done and she was negative, my sister had it done and had one of them but that’s all. Really interesting (it’s called trial net).

My hba1c is 5.3 (34) which I only manage but sticking to a (mainly) low carb diet.

Do you or your family have other autoimmune conditions?

Thank you @hothands and @Moonicorn . I have no idea where he gets his info from but do think he needs some proper education re his condition, hence me looking for residential camps. He's geographically quite far from me so I can't really help practically.

Sort of. One of my close friends as a teen had t1 and I remember viewing it dismissively, and probably assuming she’d been eating the wrong things I never really thought to ask her so this is my karma I suppose I try to be tolerant and not expect everyone to know the ins and outs of it, most of the time it comes from a good place just misguided!

I don’t, but my wider family is riddled - rheumatoid arthritis, lupus, blood disorders, eczema, intolerances… we’re a very unhealthy bunch, so in a way the genetics factor makes perfect sense.

When my cousin was diagnosed I remember my
mum smugly saying it was because my aunty let her have too many sweets as a child ‘Oh I know they say it’s not because of that but I bet it is’. She’s changed her mind now I’ve been diagnosed 😆

My eldest has T1 and is 22. Diagnosed at 13. He has brown hair and brown eyes and is 6foot 4!!! A lot of T1's also have coeliac disease - maybe this is where the stunted growth comes from? My son has coeliac disease so gluten free as well as everything else!! He fought against a pump for many years but once on it it was a game changer for him. The libre sensor has also been a game changer - remember before he was on his pump regularly getting up at 1am to check his levels because I knew he would have a hypo - so much easier using the sensor reader than having to wake him up. I am so full of administration for all you T1's!!! Xx

That should read admiration!!! Xxx

It must have been a busy traffic day as in on MN constantly and didn't see it so please don't feel everyone has overlooked it. I have a great appreciation of what you go through and while I know the condition pretty well I'm sure I'll have one more to ask

My partner, and both of our children are T1.
We've been together over 30 years now so living with all things diabetes is totally normal in our house.
One thing I will say, in my experience of living with 3 T1 diabetics for years is that each one is different, their hypos are different, their hypo "tells" are different, management is different, insulin needs etc are all different.
One son was diagnosed aged 7, the other at 19. Partner was 14.
I often say I should write a "living with Diabetics" book.

I’m a type 1, diagnosed at 7/8, I can’t remember which one exactly, I’m just a smidge over six foot (unusual for my ethnicity), I’m taller than my brother who isn’t a type 1 diabetic. I was under the impression that repeated poor management can stunt growth, rather than type 1’s being stunted across the board.

I’m a clinical assistant in a GP surgery and I manage all our patients with diabetes.

I have a patient who is only 27, his HbA1c is 130 and he goes months between collecting his insulin prescriptions. We can see his glucose readings online and they are almost always high.

All efforts to engage with him appear fruitless, when I speak to him he always assures me he is going to try harder etc - it’s like he tells me what he wants me to hear, he is such a lovely lad and I really want to try and help him. His GP has even written to DVLA to inform them about his poor glycaemic control - this lad didn’t bat an eyelid.

His consultant is aware but seems very gentle with him, they have obviously known him a long time (he was diagnosed pre-teens) so far better than I do but I am so worried about the long term, later damage he is causing to himself. I hate the thought that by 40 he could be seriously regretting this period in his life when he might begin to have serious issues.

What tips would you give me to try and help him?

Gosh. Very strong genetic component there.

It isn’t easy for family members/carers at all, in fact I would say at times it’s equally as stressful for DH as it is for me. He’s got the dual burden of also having to keep his annoyance under wraps (which I’m sure he does) because he doesn’t want to look uncaring, whereas I can just vent and say how annoying it is!

It seems very unfair that both your children have it.

Gosh that’s really hard. I’m not sure there’s much you can do if he isn’t ready to make the effort. Has he been offered psychological support? Scary to think how much damage he is doing. I’m worried enough about the damage I caused when I was a teen etc, had very unsupportive parents.

@ScoobySnacks1 holy moly 130 🤯🤯🤯

I hate to say it but I would be very surprised if he has not already done himself permanent damage. He must’ve been hospitalised at least several times by now?

For parents of teens who are off the rails I would say (in a totally non-medically-qualified but firsthand experience way) to give them a huge shot of long acting in the morning, and fill their bag with hypo snacks. Diabetics will never not treat their hypos if they can do so easily as they feel so awful; whereas you don’t really ‘feel’ high sugar in the same way, a bit hot and thirsty perhaps. If they’re not taking their fast release with meals, a big dose of long acting will keep them on an even-ish keel if not a ‘perfect’ one.

Could this be suggested? It’s not in the ‘diabetes handbook’ but I feel in extreme cases it’s probably the only way forward.

The psychology behind it is interesting. Anger is something I see (and occasionally feel myself) amongst diabetics. I had what I can only describe as a fit of diabetes pique about 9 months ago. I was ttc and trying to keep my sugars perfect, had a day of stubborn highs and just lost it! I threw all my kit and needle box across the room so it went everywhere. Annoyingly my dog chose that moment to come in, and in my white hot rage I wasn’t convinced she hadn’t swallowed one of the needles so I rushed her to the out of hours vets for an (expensive) x ray 😳 that was a bad day!

I also remember packing for a weekend away, I was about to leave to catch my train when I realised the lid had come off an insulin pen and the needle had somehow pierced a carton of Capri Sun which had then soaked through my weekend bag. Another ‘fucking diabetes, nobody else has to put up with this shit’ moment!

Please share if you have one

Great thread! DD was dx almost 5 years ago; now 13. She uses a pump & dexcom. We're in NZ & the CGM isn't funded. Cost is crippling but the difference it makes is just incredible. I'm away for work, she's staying with friends & I've just checked her numbers... 96% in range over the last 2 days so she's been doing an absolutely fantastic job.
I also wish t1 had a different name!! There's so little understanding unless you're in the thick of it - and I was very definitely in that category until the day before dx!

@Moonicorn
Yes I had a pump for 10 years but then decided it was no longer for me. Good you can get good control on pens.

Do you sweat every night? I always wonder if it's a diabetic thing! I'm freezing most of the time but hot all night. Happened since I was first diagnosed age 17

You mentioned carrying lucozade for hypos - I used to do that when they were sugary. I haven't checked it for years - is it back to being sugary again? God, I loved lemon lucozade, it made hypos bearable!

I still use lucozade because I can't find a better alternative. Been diabetic 49 years, since the age of 1, been on a pump for 20.

The lucozade original is generally efficient as it’s 13g carb per 100ml (I think!) but the nicer flavours aren’t. Bastarding sugar tax!

YES!!!! Particularly around my neck. And my sweat absolutely stinks. I thought it was down to undetected night time hypos but libre proves otherwise. Is the sweat more sugary, is that why it smells? Either way I could take out shares in Mitchum and Imperial Leather soap 😆

Thanks for your advice. I tear my hair out over him as nothing any of us say or do makes a difference!

The big shot of long acting might be worth a try, I’m not sure I’d get a GP to approve the advice though. I just cannot fathom how he isn’t ending up being regularly admitted, I can see how infrequently he is picking up his insulin (whenever questioned he claims he has a stockpile - this just cannot be the case after months and months), his sugars are always high yet he seems to be carrying on regardless. He plays a lot of sport too, I feel he believes he is getting away with it but I can’t bear to think of him in the future 😔

@Moonicorn
Ahh that's interesting. I've read before parents saying their type 1 kids sweat all night . I have a crap sense of smell so not sure how bad I smell DP not mentioned anything I used to think hypos too. I think though say you're 15 and drop to 5 body still secretes adrenaline and maybe sweat?