Viewing 40 posts - 1 through 40 (of 56 total)
  • Type 1 Diabetic?
  • AntLockyer
    Free Member

    Anyone else got T1 Diabetes? Since diagnosis last year I’ve done no road cycling (especially not club stuff as the additional faff of checking BGs etc. makes me uncomfortable) and my MTB stuff has been local woods and trail centres where stopping regularly is par for the course.

    I’m happy enough with this situation but was just wondering what others do. I know there are people like Tony Cervati who are on pumps and do very very epic rides.

    Northwind
    Full Member

    I am, but then I have been for most of my life so the impact’s a bit different. It doesn’t often impact my riding in all honesty, I’ve got pretty good blood sugar awareness and I’ve learned how exercise impacts it so I don’t need to do a lot of testing. Over time you should develop a feel for it but for the first few longer rides you’ll need to be more careful, you’ll be both watching your current position but also learning how to plan activity, dosing and eating.

    I don’t use a pump, personal choice, pump regime is perfectly compatible with cycling as I understand it. Pen certainly is.

    Most important thing is to make sure your riding buddies know what to do if anything arises… There’s people out there who’ve seen pulp fiction and thinks the correct response to a bad hypo is to inject you in the heart with insulin :mrgreen: Luckily energy gels, haribos etc are perfect hypo killers anyway so not only will everyone have the kit to sort it, there’s nothing weird about it.

    (The right thing to do is to keep other people informed, but if you were of a mind to deal with a blood sugar drop discretely then you can do. I’ve ridden with a lot of people who’ll have no idea I’m diabetic)

    Last note- we have a genuine performance advantage, we can’t insulin crash 😉 I got told off by a guide for basically spiking other riders with sweeties. I can eat all the starmix I want but it destroys them 🙂 Flipside of that is that even a very minor hypo or even just skating near it has quite a big impact on me for the rest of the day- knocks out the energy reserves.

    fenred
    Free Member

    Yep, 20 years T1, i dont ride road bikes but certainly dont have any issues mountain biking with the condition. Stopping to check your BM and making whatever adjustments you need with food/drink and insulin is second nature for me and although it can be a faff its just part of everyday life etc.
    I’ve used a pump for the past 3 years and for me its great, far more adjustable than mdi but I know some on here are happy with the mdi system so whatever works for you. Just make sure you dont let it stop you doing anything just because of the condition, if you want to go back to club riding just tell the other peeps your riding with whats going on.
    Feel free to email me if you have any questions.

    Singlespeed_Shep
    Free Member

    Talk to the guys you ride with.

    I ride with a guy who’s T1. I was gutted when I found out he was concerned that he would hold us up etc. I’d rather ride with him than without.

    If there the sort of people who are bothered by it **** em, not the sort of people I’d want to spend time with.

    votchy
    Free Member

    Type 1 for 36 years here, pump user for the last 4. Have done the last 7 mountain mayhems, pump has helped no end with control both generally and with mtb’ing, helps enormously with my phenomenon of blood sugar rising dramatically immediately after exercise and staying high for several hours and then plummeting overnight, the ability to make minute adjustments to your basal and bolus levels is a god send in my opinion, changes as little as 0.05u/hr and the ability to change this rate every 1/2hr can make so much difference, does take a bit of effort to get the best from a pump but it has revolutionised my control. My normal working week involves 7 basal rate changes during the day to effectively flat line my blood sugars, also use differing temporary basal rates depending on the type of ride, proper uppy downy mtb stuff requires a lower basal setting than a more evenly paced canal/lane kind of ride. Feel free to drop me an email if you have any questions.

    clubby
    Full Member

    I was diagnosed 15 years ago at the age of 23. It took a while to adapt but isn’t the end of the world. I actually only carry my blood meter if I’m out all day, don’t bother with it if I’m only out 2-4 hours. I’ve learned what I need to eat to keep my levels in range. Better to eat small amounts often rather than large snacks. Tried energy drinks but didn’t work well for me. Bars, gels and good old jelly babies/haribo work best as you know what you are taking in carb wise.
    Never fancied a pump but carb counting made a huge difference to my life in general, see if they run them in you’re area. Be aware of delayed hypos if you’ve had a hard ride. My sugar tends to run low for a few hours after one so I need to cut back my dose for the next meal after a ride.
    As above have said, make sure the people you’re riding with know. No need to make it a big deal, but they need to know what to go if you do have a bad hypo. Carry spare gels/ glucose tabs over and above what you need for the ride and don’t worry too much. I’ve done 12 days straight in Whistler, weeks in Spain and plenty of snowboarding including backcountry heliboarding, treat it as an inconvienience and not who you are.

    AntLockyer
    Free Member

    Thanks all, my control is pretty good a normal week is 30 tests in target (4-8) with 2 low and 2 high. The lows are usually 3 at most and the highs are testing post food if I need to drive somewhere.

    My A1C went from 13.5 to 6.0 in the first 6 months and was 5.5% the last time of checking. I feel like I have a decent handle on it now and am introducing stuff back in. I’ve learned a lot about carb counting and do it a little different to DAFNE but the effect is the same. My consultant has put me on a split dose of my basal which does give me a bit more control for exercise. If I’m going running, or golfing, or walking I can take a lower basal in the morning and I’m also learning about what to eat without a bolus (If I play golf I eat 2 bananas and a Naked bar and end up around 4.8 at the end of it).

    Thanks again for the encouragement, if I think of any questions I’ll let you know.

    DickBarton
    Full Member

    35 years and it has failed to kill me yet so I consider it a good mate! no issues with biking but lkke votchy and northwind, I’ve been at this party long enough tk be aware so possjbly not as helpful to you.
    feel free to email if you want a chat.

    yetitony
    Free Member

    T1 diabetic for 6 years now.
    Never let it stop me riding. Like Clubby I will not take my blood kit if Im out in the morning but will on a epic ride.
    Dont know if anyone else notices this but high impact exercise generally doesnt have a huge effect on my blood sugar levels. If I do a massive epic day or days then I do see the effects the next day or so with going lower.
    Strangely though low level activity like decorating or gardening plummets my levels and sends me into a hypo?
    Enjoy the riding, I seem to be able to control it better when I do exercise.
    Quite surprised how many people on here are T1!

    Harry_the_Spider
    Full Member

    Reading this with interest. My little lady is Type 1. Hopefully she’ll cope with it as well as you lot.

    Give it 15 years and she’ll rip your legs off. 😉

    piedidiformaggio
    Free Member

    Hello, another T1 here, currently on pens, but at my next consultant appointment (in a few weeks) will be asking to give a pump a try.

    Generally run myself a little higher than normal before a ride and just adjust whatever needs to be done along the way. Most of the guys I ride are fine with this, if they aren’t, well that’s their problem.

    The whole DAFNE thing has helped me massively and expecting a good set of bloods this time.

    I’m pretty sure that going on a pump will be good for me as it will suit my lifestyle better and not have to carry the flippin’ pen around everywhere (PITA at gigs!)

    Done all day rides without issue, well apart from last year’s extended London to Brighton off-road, but that was more down to the monsterous hangover I had (never go to a gig and say ‘I’ll just have one’ the night before a big ride!).

    It may be a pain now, but you do get used to it and you do get to know what your body is doing. I’d say 99.5% of the time, I know when I’m getting low. Can only think of one time when I got caught out and the was a quick ride between offices in London, getting to the destination, thinking, Hmm, ‘feel low’, doing a test and finding I was at 1.3! Emergency cake featured that afternoon!

    Anyway, back to longer rides, I always have some gluco tabs for a rapid resumption of sugars and something longer lasting. Homemade flapjack is always a good option!

    Beagleboy
    Full Member

    I’ve been Type 1 for 19yrs now, having got it for my 24th birthday. I’m on four injections a day, not wanting a pump as the idea gives me the heebiejeebies. Only real issue I have is a long running battle with low hypo awareness. However, all my riding buddies look out for me in that respect.

    Recently, my doc told me to halve the amount of insulin I take before heading out on a ride (I would normally reduce my dose by a third to a quarter), and I reckon this has made a noticeable difference. I’m no fitter or slimmer, but I seem to be riding longer and faster before I blow up! 8)

    Just remember that you control it, not t’other way round. Get out and enjoy yourself dude!

    Craig xx

    trickydisco
    Free Member

    A guy i ride with is type 1 diabetes and set up his own elite cycling team this year (he’s been an elite roadie for years)

    http://www.britishcycling.org.uk/road/article/roa20130131-New-elite-road-cycling-team-to-raise-funds-and-awareness-for-Diabetes-UK-charity-0

    DickBarton
    Full Member

    Just re-read my post – I wasn’t hypo whilst typing it…bloody mobile phone and phat phingers so I was hitting what I thought were the right keys but weren’t!

    househusband
    Full Member

    Another T1 here; got it for my 24th birthday some nineteen years or so ago.

    I’m always curious to read about cyclists findings with pumps as I’d consider them invasive and a permanent reminder that I am indeed diabetic. Seem to be doing okay with pens but I’d never preclude trying a pump.

    My biggest frustration with diabetes is, seemingly, the ease with which I get ill (coughs and colds) and the length of time I seem to have them.

    My endocrine system seems to be gradually throwing in the towel as I found out only a few days ago that I now have an under-active thyroid…

    DickBarton
    Full Member

    I’ve been on a pump since August last year…have to say it’s a revelation…far fewer hypos, all explainable. Much less insulin on a daily basis and I think I’ve got it worked out for biking as well…which is handy.

    Injections are now once every 3 days and it seems far easier to deal with than injections…personally, I think it is a superb thing. It does mean you have to do more blood tests but to be honest, I don’t think that is an issue…30 seconds a time so not a big deal.

    Horses for courses though…a year ago I’d have said no thanks for a pump, since having it, I don’t want to go back to daily injections…I was on at least 5 a day so this is a revelation!

    Harry_the_Spider
    Full Member

    Thanks for contributing to this thread. As parents of a 3 year old with Type 1 me and Mrs The Spider have been relieved by the way that you lot just “get on with it” when a lot of the stuff that you see is all doom and gloom.

    We just need somebody to invent a closed loop feedback monitoring/dosing implant or for stem cell scientists to find a way of regenerating the pancreas.

    Thanks again.

    dmorts
    Full Member

    My girlfriend is T1 and has major frustration with getting the correct information from medical professionals and/or getting to see the right person. She once was referred to a “specialist” nurse…. who had a Diabetes for Dummies book on her bookshelf behind her, and was pretty useless! Also apparently in her experience Scotland seem to do it better than England overall care wise.

    You guys got any tips I can pass on? Who have you got the best care/advice from?

    Also has regular exercise improved your control? If so what sort?

    votchy
    Free Member

    m always curious to read about cyclists findings with pumps as I’d consider them invasive and a permanent reminder that I am indeed diabetic.

    This is the only downside I have found with a pump is the constant reminder, however, the pros (for me) have far outweighed this.

    PJM1974
    Free Member

    One of my stepsons has been Type One for three years now. He’s been on a pump since 2011, which has improved his quality of life no end, but I do get why some folk here would find it intrusive.

    Teenage hormones and food intolerances (the latter do often go hand in glove with Type 1) are an absolute bastard, but we’ve done our best to immerse ourselves in knowledge. There’s a fantastic book by Dr Ragnar Hannas that’s aimed at children and adolescents, but it also contains a lot of easily understood information on exercise and blood sugar.

    And I find it amazing that there’s so many Type Ones on here too…hats off to you all!

    PJM1974
    Free Member

    @Harrythespider

    The closed loop is something that’s been the Holy Grail of endocrinologists for a long time now. The JDRF are doing some amazing work in this field.

    piedidiformaggio
    Free Member

    Just getting on with it

    Well, you either do that or you don’t. If you do ‘just get on with it’ you can do anything you want and eat anything you want.

    If you don’t you are setting yourself up for some pretty grim complications including amputations.

    I see it as a bit of a mixed curse/blessing. Yes, it’s something you constantly have to be aware of and, of course, sometimes you get thouroughly hacked off with it, but you learn to accept it as just part of who you are.

    I’m lucky that my NHS trust seems to handle my care really well with a dedicated diabetes unit within the hospital near me. Generally speaking, the specialist nurses give much better advice than the doctors. the docs are quite matter of fact ‘do this, don’t do that’ in their approach, but that’s probably more down to their workloads. The nurses seem to understand and empathise more.

    As for day to day, well I’m doing the long commute home at 5pm, which is 35 miles. I’ll take a test before I set off and maybe have something to eat. I know I should be OK all the way home, but have my tester and Glucotabs in an outside pocket of my camelbak just in case. Just requires a little bit of planning but nothing complicated or time consuming!

    AntLockyer
    Free Member

    Funny, after starting this thread I had a hypo yesterday, 2.6. Lesson learned don’t go upstairs with the wife straight after dinner 🙂

    I read a fantastic book called Think like a pancreas. I liked it so much I emailed the author Dr Sneider to tell him.

    Right off for a bite of mars bar and a bike ride 🙂

    Northwind
    Full Member

    piedi di formaggio – Member

    I see it as a bit of a mixed curse/blessing. Yes, it’s something you constantly have to be aware of and, of course, sometimes you get thouroughly hacked off with it, but you learn to accept it as just part of who you are.

    I always say, as chronic conditions go it’s one of the better ones 🙂 I got lucky, I just got the diabetes and the coeliac and the shortsightedness. My brothers are both ginger.

    tutgareth
    Free Member

    My word there are a few of us here! 🙂
    Type 1 from birth, have ridden MTB’s since the age of 13 (I’m 36). I exercise when i can but have good BG awareness and try to keep them in control. it does take time to recognise the symptoms of high / low BG so dont be afraid to test yourself, I do 7-10 times a day, and adjust my insulin / carb intake accordingly.
    Have you been on the Dafne and carb counting courses yet?

    When out on the bike i test before and every hour during (good excuse for a rest lol) then also after. I usually lower my insulin intake slightly before exercise and always carry plenty of glucose with me just in case I need it (more often than not!)also if you BG is slightly above normal before excercise dont worry too much just monitor it.

    only tip i would give is dont worry what anyone else thinks and if you feel you need to stop for a blood test and have a mars bar then do so dont let it get to you its just the way things are, and Diabetes does not stop you from doing anything

    tutgareth
    Free Member

    hmmmmm… I notice a trend for pump users on this thread….
    How do the pumps and implants hold up to trail centres and general singletrack and DH duties? or do you not wear them when riding?

    tell me more.

    DickBarton
    Full Member

    pump seems to be fine but I’ve yet to crash it in a fall…as ive had if sknce near birth (17 months) yhis is all I’ve ever known. I’m sure it was a nightmare for my parents but I was brought up with it never as a barrier or blocker. I regard it as a mate as otherwise it could be very easy for it to control life.

    I’m far from perfect with it but overall I’ve no other related issues mentioned above. I do have a suspected under active thyroid but it is so close to normal, they are certain it is.

    otherwise, life is like everyone else’s…it doesn’t stop doing what I want so overall, as northwind says, it is 1 of the better illnesses to have. reminds me of the Life of Brian sketch about crucifixion…’could be worse…could be stabbed!’…etc.

    AntLockyer
    Free Member

    I suspected I had diabetes 14 years ago and presented myself to the doc with this. They did some test and stuck me on Thyroxin for an under active thyroid which they then took me off 28 days later as it sent me too far over on the lowest dose.

    The difference in my life since diagnosis has been huge, all the things I used to think were normal went away, things like weak bladder, thirst changes etc. So it is something I’ve been living with mildly for a long time.

    I’ve not done DAFNE although they offered it to me, the reason was she said my level of diabetes education was excellent (I’m a real geek and immersed myself in the subject) and she thought I wouldn’t learn anything that I didn’t already know and practice. The place could be used for someone who doesn’t have that level of education but it was up to me.

    aphex_2k
    Free Member

    14 years t1 on the magic mix of lantus and novorapid.

    Can’t be all that bad an illness when your medicine is chocolate!

    Been down to 1.4 on a ride and felt fine. Been to 3.6 and been sweating my t1ts off. Weird illness at times. Annoying to carry my insulin BGL machine and lucozade tablets everywhere. (Prefer Lucozade tabs to dextrose as they dissolve in the mouth easier). Annoying that I’m pretty skinny apart from my flabby pin-cushion gut! Never really considered a pump as I just don’t fancy carrying it on me all day. I have a friend in A&E who swears by it though.

    I’m a nurse on an acute psych ward and have just taken a role as the diabetic go-to guy so that my peers can come to me for advice. It’s a huge role as I’ve only really considered me and my blood sugars and keeping them down. Working with some of my patients who have issues going hypo all the time as well as being manic or psychotic! Makes for an interesting day!

    I do love my grub and also love being able to jab more or less insulin as I eat (or don’t). Always carry a few selections of nutty type bars.

    Anyone find that if you hypo in the night you lie there thinking “I’ll go back to sleep and I’ll be alright” wake up five mins lare soaking and think “get up you pillock” eat a huge bowl of cereal with milk, then wake up the next day with a BGL of 20. Like, FFS!!!

    Also ate a bowl of cereal on more than one occasion with milk that had gone off and not realised until the missus says the next morning “the milk was off, you didn’t drink THAT did you??”

    Northwind
    Full Member

    tutgareth – Member

    hmmmmm… I notice a trend for pump users on this thread….
    How do the pumps and implants hold up to trail centres and general singletrack and DH duties? or do you not wear them when riding?

    I went back to the pen… Not because of cycling though, for short rides I took it off, for long rides I did find it a pain though but liveable with. TBH I was never happy with the pump on or off the bike and I was glad to be shot of it. But most people get on with it and it seems like most folks benefit.

    (I also wasn’t that convinced by the benefits- my control got better and they said “That’s the pump”. No it’s not, it’s because you’ve got me doing twice as many tests! I’m confident I could have microdosed with the pen and got the same benefit. But ymmv)

    househusband
    Full Member

    …eat a huge bowl of cereal with milk, then wake up the next day with a BGL of 20…

    LOL! Happens to me from time to time; so easy to over-compensate when you’re hypoglycaemic.

    votchy
    Free Member

    hmmmmm… I notice a trend for pump users on this thread….
    How do the pumps and implants hold up to trail centres and general singletrack and DH duties? or do you not wear them when riding?

    so far my pump has survived 3 crashes that have broken ribs, 1 crash that damaged ankle ligaments, 1 crash that required shoulder surgery, been dropped several times and stood on, pump is not in a protective cover of any sorts and is always in one of the pockets on my shorts, test kit is in another so I would say they are pretty tough, there are various straps and holders available to position the pump out of harms way and also to protect it but I haven’t bothered with any yet. My riding is general cross country and trail centre.

    votchy
    Free Member

    Anyone find that if you hypo in the night you lie there thinking “I’ll go back to sleep and I’ll be alright” wake up five mins lare soaking and think “get up you pillock” eat a huge bowl of cereal with milk, then wake up the next day with a BGL of 20. Like, FFS!!

    I find one of the hardest things to do is treat hypos effectively, I know I should follow the 15-15 rule but when your BS is 2.2 your body goes in to a self preservation mode and logical thought does become very difficult.

    One thing that I haven’t seen touched on so far in this thread is the emotional difficulty of dealing with diabetes from your partners perspective, can be quite tough on them when you get stroppy in public if your BS goes high or low as generally you are seen as being an 4rse by everyone else and the ‘ why does she put up with him talking to her like that?’ comments and glances, I really appreciate how much help my wife gives me and the grief I cause her!

    fenred
    Free Member

    Lots of different issues have popped up on here, so here’s my take FWIW….

    Firstly, anyone considering the pump should be aware it’s like starting all over again, getting basal and bolus levels right is a chore and you WILL experience highs/lows/mood swings/despair blah blah but from personal exp its well worth the bumpy ride in the long run YMMV.

    Secondly, the pump is VERY durable, I never wear mine externally, always with a tiny hole cut in my pockets and I feed the line through. I’ve come offf the bike numerous times and all has been good. I have a friend in Canada that raced DH for a factory team and MX/Enduro at National level and bins it regularly and he’s never broken his pump from a crash.

    Third, get hooked up to a good diabetes centre, I use Broomfield in Chelmsford in Essex and they are ACE!!

    Fourth, the high BM post hypo is contributed to 2 things, either over eating at point of hypo or not catching it quicly enough and “rebounding” whereby the liver kicks out the bodys ’emergency supply’ of glucose and topped up by what you’ve put into your system…We’ve all had that and know how shit that feels the next day!
    With the pump you only need your quick acting glucose and thats it, no long acting carbs required, jelly babies for me and many others, trust the pump if you are using one, it’s a little box of magic once you have it all dialled! 😀

    The emotional/partner side is a whole different topic, all I know is I’m better controlled now therefore a much nicer person to be around, happy to give a few character asssasination witness numbers out tho if anyone’s interested 😳

    HTH….

    kcr
    Free Member

    Former elite cyclist Roddy Riddle had just run the 6 day Marathon de Sables in the Sahara. He seems to be another pump user, and talks about using a new continuous glucose monitor here :

    Type 1 and the Sahara… – by Roddy Riddle

    grilla
    Free Member

    34 years type 1, novorapid and lantus pens. I’m pretty aware of my levels changing, don’t take readings out on rides but carry glucotabs and stop to eat a power bar if I’m out over 2 hours. I only drink water in when riding, just used to it.

    also exactly this ….

    Anyone find that if you hypo in the night you lie there thinking “I’ll go back to sleep and I’ll be alright” wake up five mins lare soaking and think “get up you pillock” eat a huge bowl of cereal with milk, then wake up the next day with a BGL of 20. Like, FFS!!
    I find one of the hardest things to do is treat hypos effectively, I know I should follow the 15-15 rule but when your BS is 2.2 your body goes in to a self preservation mode and logical thought does become very difficult.

    .. which is super annoying when trying to lose weight.

    DickBarton
    Full Member

    CGM is available but it is very pricey and at present not available on prescription…pump I use (Medtronic) has a CGM that mates to the pump – £500 for the sensor and 5 (or 6) ‘plugs’ – they last about a week each and they talk to the pump…it can be set to stop insulin delivery if blood too low but depending on position on body, it can be measuring a 20 minute delay.

    Apparently insertion isn’t comfy and after you use the ‘plugs’ you need to buy more…the sensor bit is already bought but the ‘plugs’ cost about £200.

    Had a nosey but not tried but it seems a huge waste of cash for the benefits it isn’t going to give me…I have reasonably control over my bloods so don’t see the CGM as being massively beneficial to me personally.

    kcshaple
    Free Member

    Type 1 for 35 years since I was 15. Novorapid & lantus. no prob recognising low blood sugars. Been mtb’ing last 12 odd years, recently on a Canyon Nerve XC as a early 50th birthday present. Always blood test before 2 hr rides (North Hampshire)at the weekend @ 7:30 , porridge/weetabix as usual beforehand. Energy bar for ride. I dont bother testing during ride. Will be in Afan on Sat to do W2 so will take bg meter with me then. Ditto Alps in June – first time there(with Bike Village). I agree as a serious disease we’re pretty lucky as long as you keep it under control because we just have to eat healthily. Far better now than it used to be with the glass syringes!

    piedidiformaggio
    Free Member

    Well, wouldn’t you just know it, I went and have a full on pool of sweat hypo last night, but that’s probably related to doing the long commute (36 miles) home last night and being hit by a car (that’s another story)!

    Fenred – I’m under Broomfield as well. What pump did they give you? I’ve done the BERTIE course and have been religiously carb counting, etc for the last 6 months. Got a checkup appointment in a few weeks and will be asking them if I can go on a pump as think it will suit me. Thanks

    LenBuch
    Free Member

    Hi
    I’ve been T1 for about 3 years now and have not altered my cycling at all – 4 to 5 time a week half MTB and half Road – road rides about 70 miles’ish and 3-5 hrs mtb rides.

    I can usually go about 2 hrs after breakfast without having to test, however, when first diagnosed it was about 30 mins. Things were a bit erratic at first and my diabetic team and I couldn’t figure out why I would get spikes and troughs.

    I was on Insulatard at the time which peaks – I have since moved on to Levimir which has a flat graph so doesn’t peak. I only take this once a day at bedtime as it lasts 20-24 hours – much more cycling friendly.

    Did about 4000 road miles lasrt year plus the mountain biking and did the Etape du Tour.

    Don’t let it beat you – don’t become a victim and keep riding as much as you want! Look at the “Team Novo Nordisk” road cycling team for inspiration and tips – they are all T1.

    Happy cycling.

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