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 love this thread. If anyone has any T1 closed loop pregnancy questions I am happy to nerd out! Usually we can get women 92-96% TIR with some hard work and tweaking - obvs not offering medical advice on here. Ever.

Also I meant ‘gate keepers’ not ‘hate keepers’ in my previous post.

I guess I just want to know how DSM can make care better for women with T1 in pregnancy.

Great thread. My dd is T1, diagnosed at 12. She always smells sweaty and we constantly put it down to no/not enough deodorant but maybe it's diabetic sweat?? Feel a bit bad for being on her case now.

She's on a closed loop pump and I cannot recommend it enough, total game changer

Fascinated by the sweat thing as I've always, since he was a small boy, thought my ds's sweat smelled distinctive, not bad, just unique. Didn't think much of it. Now he has been diagnosed as T1 in August last year age 17 (now 18) and i just feel like since he's been in insulin he smells different, there's always a faint smell of something which I assumed was insulin related. Slightly 'orange had wash' in aroma is the only way I can describe it.
Anyway, my question is around driving as he has his test this month and I'm terrified of him crashing due to low bloods. He has literally NO hypo awareness; his libre alarm will be going off at 2.9 and he will feel normal. Is that a good or bad thing? And how do you manage driving? Will if affect his insurance? I can't find clear answers online, only conflicting advice.

Hi, fellow type 1.

I'm on a pump and libre. I got diagnosed almost 16yr ago, at 19 years old.

@bearfood I don't think he would qualify for a driving licence, with no hypo awareness. I got my licence years ago, but I renew it every three years, where I and one of my doctors confirm I have not needed help to correct a hypo.

DVLA need to he told about type 1 diabetes or they would/ could fine your son if they find out. How? I don't know.

Insurance have been ok, if they are charging me extra for diabetes, I wouldn't know.

We need to check blood every two hours, whist driving or/ and before driving. This is where the libre makes things simpler.

There is also different wait times, before you are allowed to drive after a hypo.

People have got their driving licence back after they lost it on medical grounds. I know one person who has managed this, but we are no longer close as he moved away.

My boyfriend off just 5 months has T1. It never really crossed my mind that it might be an issue. He has a pump and sensor and other than having a dose when he eats and checking his sensor when it beeps, it looks like it's under control

However, reading the comments here I feel that I might be a bit insensitive and not really realized how hard it is on him? Is there anything I should know about to be more supportive to him?

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!

Brunette here, have had T1 for 22 years.

Ah, I needed this thread tonight. My 6yo is Type 1 and so am I. It's 2am here and I've not slept yet trying to bring down a major high after multiple pump site failures (6yo, rather than me), and losing the will a little bit. It all just feels so bloody relentless. I don't have a question for you really, sorry, but just wanted to say thanks for starting the thread. It's helped me feel less alone tonight ♥️

No night sweats here.

I don’t think you need to do anything to be extra supportive to your partner, maybe ask him? If it was me I would say I would love it if you bought me all the nice expensive low carb foods - Carbzone pasta, rice and wraps, seriously low carb bread rolls, Quest tortilla chips 🤤 but other people may prefer you not to make any changes.

Hello @Moonicorn ,

Thank you for this thread. One of my children is T1D, diagnosed at 18 years, 2 years ago and I welcome anything that raises awareness. After the initial shock, he has coped admirably and takes it all in his stride. He has always had a Libre or Dexcom since diagnosis but I still worry about him.

Can I ask you, he is in range > 90% of the time but still goes up to 10 most days for a few minutes. In your opinion is this really bad or should I just try and relax?

Also have you reached a point where it's now just part of life and you can relax?

I must admit that I've really struggled mentally since his diagnosis. Not because I feel guilty - auto-immunity is a big thing in my family but I couldn't have prevented it. Instead I have found his diagnosis depresses and over-whelms me because I worry that he will never have the carefree youth I had.

I try to reframe the diagnosis a bit. If I wasn’t diabetic I wouldn’t have the awareness of a healthy lifestyle, I go to the gym 3 times a week and don’t eat crap (I’m lying, I try not to eat crap). It definitely is a way of life. People who aren’t diabetic can spike after a meal, that said a spike like that can usually be eliminated with a little bit of tweaking to bolus time. There’s a someone on Instagram called Insuleoin who is an Irish coach (diabetic - weight training etc) he has a podcast it might make you feel better about what your son can achieve. Nothing will take away the fact that it’s shit, unfair and hard work but things have come so far from the pig insulin being injected twice a day and massive lancets that hurt so much for finger pricks!

I assume that was for me, thank you @WreckTangled x

Yes sorry, mn mobile site is shocking at loading and I couldn’t scroll back to tag you!

Does everyone find that the libre is accurate? I find mine to be ok at showing trends but sometimes it seems to have a mind of its own. It sometimes gives a sudden warning like 3.2 downward arrow and then 2 mins later we’re on 5.6 and it removes the red 3.2 from the graph.

I've always assumed that the algorithm that the Libre uses works out a running average based on constant readings and sometimes a reading will be really wrong and give a false high or low. Once a few more readings have been made this erroneous reading is them corrected. That's just a guess though :)

Often it’s not accurate. I use xdrip4ios (third party app) which means I can calibrate it and get readings to my Fitbit which then vibrates if it’s high or low. I don’t use the libre alarms.

Nice to see this thread has picked up. Hello to all the other T1s and parents of T1s. I absolutely would campaign for the name of T1 to be changed. It’s one of the biggest problems with the disease.

OP, I also get diabetic rage. One time I was high all day (around 18) couldn’t get it down and threw my kit across the room and smashed a beloved display item belonging to my husband. I felt awful and spent hundreds replacing it.

Also there is currently a large scale clinic trial called ELSA going on at the moment for kids of T1s to see if they have antibodies that might predict it. If they do there is apparently a new drug available that can potentially hold it off for at least a little while. Might be worth looking into.

Solidarity to you all. Fuck T1 diabetes.

Is that hydroxychloroquine? That’s the same drug TrialNet are trialing (the one Trump was taking when he had covid 🤣). They’ve been trialling it for a while, I haven’t heard of the ELSA trial so off to Google…

@BloodyHellKen I could have written your post. DS was diagnosed in August at nearly 18. Im in bed in tears as he is out drinking and is having to inject in the toilet of the pub as he's having a high (20.1 and rising). Hate that he can't be carefree like his mates. Hate that I worry constantly and feel I've aged 10 years since he was diagnosed.

@bearfood lots of love to you.

I have the ELSA kit in my handbag right now - DC are on that trial!!

I’ve name changed to reply to this thread. One of my children was diagnosed last year at 9. I was very much aware of T1D before her diagnosis but living with it now, being responsible for it - it’s just something you can never switch off from like someone else said. I liken it to having a very young baby again. We are up every 2/3 hours overnight scanning because I don’t trust the Libre alarms to go off. At least a baby cries to let you know it needs something though!

I am worrying a bit about her hypo awareness as a few times recently she’s been in the 2s before she’s felt it.

Looked in the fridge tonight to find the hot chocolate powder in there and the milk was sitting in the counter. Remembered she’d had a hypo as she finished up making her hot chocolate and that explained it!

Thanks for the thread OP. The more awareness raised about this the better. People really do not realise how serious it is until they’re living with it. Which I suppose is understandable!

Oh I missed this thread it was started! Thanks for doing it OP. I’m the poster (nc) referred to about taking DS to A&E with suspected T1! He was diagnosed 6 months ago now.

He’s brown haired, brown eyed and 5ft 9 at age 12! He always been tall for age but has definitely shot up since last summer. I was thinking it was the insulin!

His sugars have been a nightmare for the last few months after starting off really well - 80/90% in range, probably on honeymoon though.

It’s driving me nuts. He’ll stay massively high all day from breakfast onwards (no matter if he has low carb eggs or cereal), corrections don’t have much impact, then he’ll go right down in lows from 4-6pm onwards. Stay within range until he goes to bed and then rise and rise during the night while asleep. We’ve tweaked his ratios and he goes a bit lower during the day but nowhere near range and it doesn’t last long.

Any ideas? Could be puberty but really don’t want to go through this for another 6 years!

Our CCG won’t find a CGM as he’s over 12 so we’ve self funded a Dexcom from the 2nd week of diagnosis. Now on G7.

They won’t fund a pump either and have told me even if I self fund (at great expense) an Omnipod 5 (closed loop, released in June in the UK?), I still can’t have it as they won’t be able to do the training until next year due to staffing!

So upsetting as DS is really burnt out now, hates doing the injections, only wants to game and doesn’t want to leave the house outside of school - school attendance has been below 70% this year as he’s got every bug going, has often said he’s ill when he’s probably not or he’s tired as I’ve had to wake him to correct a high or he’s been high overnight. He’s was a 100% attendance kid that was never ill before diagnosis!

@FrostyNethers that doesn’t sound right at all!! Every child should have a CGM I’m sure it’s almost law (not the right term but like the NHS equivalent). I’d fight that all the way. You’re telling me your poor boy is finger pricking all day every day? No way. Are you in the FB groups?

Sorry sorry missed that you’re finding Dexcom but that’s not right!

@FuckyouT1D (fab user name!), yup. Been told that they were having meetings about the NHS guidelines but nothing formalised yet. Complained to the CCG as well.

The cut off in my area for funding is 12. He was diagnosed at 12 years and I month!

Really makes sense to not ensure over 12s have the tech to manage their condition more effectively while they’re going through their flipping teen years and want to eat junk, rebel etc!

@FrostyNethers
Frosty where in the country are you? Because your post makes me so sad, furious. Is your ds under a good consultant, with a good hospital?

I have been under many fabulous hospitals, Plymouth, Portsmouth QA, Oxford John Radcliffe, Bristol, Surrey, now Kings in London for 20 years.

I've been on a pump for 20 years, had a consultant and a pump specialist nurse allocated to me, for all that time. I pay for nothing. All my prescriptions are free. For anything. My testing strips, my pump, my pump supplies. my libre2, my cgm. All funded.

So should your ds's be. Makes me furious to hear. Cut off funding at 12. Makes my blood boil. No training till next year? What the fuck. What about clinical need. Hypo awareness? Could we help you fight in any way? I can't accept that he doesn't meet the eligibility criteria.

Can you email, so that it's in writing, so there's a paper trail. If you ask a nurse or the GP or the consultant to put in writing why he doesn't qualify, and that might scare them enough to reconsider once they've committed themselves and put it in writing, and it makes it worse for the person who's actually writing your son is not entitled.