Diabetes Type 1

bfreeman0

Hi, my friend had diabetes type 1 and she does a lot more than me in every aspect, works 5 days a week, does college work on the weekends, cleaning every weekday. But she is how should I put it...her bmi isn't within the healthy weight boundary.

I'm just wondering is there anyone who has type 1 who can lend a hand, her dietician is useless not because she doesn't give advice but because my friend can't understand a word she says.
Anyway a big thank you to anyone who helps out, you'll be making her life a lot easier, oh and mine she'll stop moaning hehe.

Fenred

Hmmm, been hovering around this site for a few months now pretty much everyday and now seems like my time to jump in!

I've been Type 1 for the past 15 years so pretty much have a good handle on what the condition holds and what your friend has to deal with on a daily basis...

First off, good for her, she seems like she's continuing to do what she should be doing, ie normal everyday stuff! It's a BIG ol' learning curve from the outset (how long has she had the big D') and that learning curve continues EVERY day!

The "white coats" are sometimes hard to follow, docs/nurses/etc and sometimes the only real help comes from life experience and others that have the same deal.

I notice there are one or two "threaders" on here that also reign T1 so no doubt they'll chip in their views etc, but a little more info is deffo required here, example current insulin regeme (MDI/pump etc), so bang away, or get your friend to join up or pm me and I'll happlily offer my own exp and help as much as I can..

.

bfreeman0

Well she's had it since she was 12, met her when she was 16, and she's currently 18.
She takes insulin before meals, and also takes glycogen (w/e its called) twice a day.

Tartanyak

My girlfriend of many, many years has been T1 since she was a kid (nasty illness, bye bye pancreas kinda thing) so if there's any specific things, I can pass them along.

However, she uses a pump and they seem to make life a hell of a lot easier.

meanredspider

I work for one of the big diabetes medical device companies. There are some fabulous on-line resources and communities. Maybe start with JDRF (Juvenile Diabetes Research Foundation - we're working towards an artificial pancreas with them) and go from there. Or, of course, Diabetes UK. The on-line communities are brilliant though (far more helpful than BR ) - I learn loads about our products and how we can make them better from them. Generally, though, losing weight is the same approach. You're right to be concerned though as the morbidities related to diabetes are very serious and keeping A1C levels under control is really important.

Northwind

Right, most important thing is diabetes does not make you overweight, and being overweight doesn't make you type 1. People associate the 2 but only because obesity is such a risk factor for type 2 (so you get a lot of overweight type 2s- but that's the obesity making them diabetic not the other way round.)

So. Tackle it like anyone else. 99% of being type 1 is about doing stuff just like everyone else after all, this is no different. She doesn't need a diabetic specialist dietician (though they should be able to offer some advice), she just needs what any other overweight person wanting to lose weight needs- exercise, better diet. Weightwatchers maybe- the weightwatchers regimen's completely compatible with diabetes as I understand it and actually anyone who's used to carbcounting for diabetes should be able to pick up calorie and fat counting easily.

Plus it's good to feel part of something normal. I used to go to diabetic groups when I was younger, I stopped because I was fed up of organisations designed to make me different. She's not an overweight diabetic, any more than I'm a cycling diabetic.

As long as she understands her carb counting and dosing anyway but I'm assuming she does. If she doesn't, she has bigger problems than being overweight tbh, the prognosis for diabetics with good control is decent, with bad control it's horrendous. I mean properly horrible, amputations and blindness and such. Brr.

Only caveat I'll add to this is that overeating (if that's the actual cause) is a very complex thing sometimes. I knew a seriously obese t1 diabetic who was ordered to lose weight after a heart attack. She went onto diets, but then intentionally (whether she knew it or not I'm not sure) would make herself go hypo so she could justify eating sugary food to fix it, then complained "Oh there's no chance I'll get thin because I'm diabetic", even with me sat opposite her at 9 and a half stone. She died sadly of a second heart attack, after putting on weight after the first. But never was diabetes the problem, it was just drafted in to her excuses/justifications as part of the wider eating disorder. Very sad to see. Psychology is a bastard.

(I'm skinny as anything but I used to be a right sod about overweight people, just greedy, blah blah. Turned out I'm an idiot)

Fenred

Agreed on all of the above!

Northwinds post demonstrates absolutely the right attitude and mindset. Carb counting vs insulin sensitivity is essential and sadly there are huge amounts of T1's who havent got the first clue! Healthy eating, good bs control and equally important EXERCISE are the keys to weight and blood sugar control. I'm lucky and dont have weight gain issues but can sympathise with those that do.

Conversley to the sad story above I've read about a couple of T1s that have run high bs (hyper) in order to lose weight then suffer the complications as a result BIG no-no!!! Yep psychology is a bastido...

+1 on the insulin pump Tartanyak, I've been using a pump for just over a year and the results are awesome, my HbA1c is much improved, not perfect but far better than the old mdi regeme! Interesting that still only 3% of UK T1's are being offered/use the pump, 9% European vs 45% in the USA, gulp!

As meanredspider says there is plenty of online resource available and those forums can be fantastic for info/advice/support, worth your friend checking them out. She'll find others in the same boat guaranteed....

bfreeman0

ok thanks all, we've been looking into getting the pump. But do you have to sleep with it conencted?
The thing is she eats only a little more than me and is overweight and im skinny. Though she is looking into buying a bike so that we can go riding together.
And since she eats at home it is difficult to plan round her tea.

ollie_lucas1985

Another T1 here.. .. what is this Pump thing being talked about?

and out of sheer interest what is everyones HbA1c results?

Fenred

Cant recommend the pump enough. Yep it takes some getting used to as at first it seems complicated and you are hooked up to it 24/7, exept for the 3 S's, you can unhook for 1-2 hours. For riding and exercise its awesome as you can adjust your basal rates on the fly in real time rather than squirting in a load of insulin with your last meal, eat more as your about to ride then hope for the best! all far more controlable...There are a few manufacturers about but here's mine:

http://www.medtronic-diabetes.co.uk/

In a year my A1c has gone from 9.9% to 7.6%, not perfect but gettin there...Only prob is the price of it so you need a PCT that see's the benefit of it long term.

Tartanyak

Same pump as my girlfriend has - she's onto her second one now. Very tough, very reliable and compared to injecting, absolutely wonderful. She's Dutch, her medical insurance jsut gave her one. They solve so many problems though.

She even got offered the one with the real-time wireless blood sugar sensor, but turned it down because it'd be another thing she has to shoot into herself. I was really curious to see how that'd work.

She doesn't notice it when she's asleep, unless she knocks it out of bed and it hits the frame. They make a noise. Also, there's always somewhere to stuff it. You can get a hose long enough to stuff in your sock, or short enough for a pocket. Or wound up in the top of tights. Some people have made a garter thing to hold them too...

Ollie - it's an insulin pump that drip feeds insulin. You have to shoot a canula/needle thing into yourself once every few days, plug in the pump then only fiddle when you need more/less insulin. Or when it beeps to get a new battery every couple of weeks.

meanredspider

Pumps are great though very expensive.

Take a look at the Animas pump too - waterproof and with a wireless meter-remote

http://www.animas.com/animas-insulin-pu ... touch-ping

ollie_lucas1985

The thought of this actually makes me feel abit queezy, I dont think i could put a need in myself and leave it..

A couple of years ago i was around 9.0% - i then dropped to 8.5, 8.0, 7.50 and now im at 6.5% which is amazing considering how much i eat!!

bfreeman0

I think it would benefit her greatly, as she sometimes leaves her pens at home when she eats.
Recently we have been using Wii Fit and she seems to losing some weight, but it is hard to use because the tv it is connected to is always in use.
Personally I don't think I would be able to manage being a diabetic. I would be fine with the needles but going to the doctors regularly and not being able to have certain foods that I love would not be good.

Fenred

Ollie, you dont leave the needle in mate, it's a tiny teflon line that sits just below the skin, daunting at first but I dont even feel it...Sounds as tho your control is bang on anyway tho so you might not even qualify as my pct specifies A1c over 8.5% or loads of unexplained hypos as their criteria to make the switch. Not sure if all pcts operate in the same way. Good on ya tho you seem to be doing well on mdi!!

That animas pump looks cool meanred, liking the idea of waterproof and wireless glucose monitoring!

I stopped wearing tights and garters with mine since I felt cross dressing want really my thang Tartanyak ...Haha I just have mine in my pocket with the line threaded thru a tiny hole cut in my pocket, then at night in bed clipped onto the back of a pair of surf shorts...Dont even feel its there. I'd deffo be up for the real time monitor thing but my pct wont pay for that as well, I think it works out around £45 every 3 days or something ridiculous, so if your GF could get it for free she's had a touch, would be interested to hear if she changes her mind....

Not having to worry about carrying pens/needles blah blah is a massive plus OP, plus if you do hypo (which is rare)you dont hafta eat loads of long acting carbs , just you glucose tabs/jelly babies etc. Job done!

Northwind

bfreeman0 wrote:

Personally I don't think I would be able to manage being a diabetic. I would be fine with the needles but going to the doctors regularly and not being able to have certain foods that I love would not be good.

It's surprising what you can get on with when the alternative is feeling constantly ill then having your body explode really Also the objective is normal eating- when I was diagnosed, well, it was the 80s but even then they were trying to get away from the old "diabetics can't eat chocolate" nonsense. Sure you have to have some balance of carbs and fast vs low gi foods but that's just normal anyway. There's no food I don't eat due to diabetes.

Pumps... I stopped using the pump, just was never happy having it connected, it was a constant irritation. Have to say that's the only time I've ever been disappointed in my outpatients' department, I have good control but they just weren't interested in hearing a bad word about the pump- it's the future, it's the best thing, you will love it, you'll never know it's there. Hated it, told them so, they just didn't listen. Stopped using it of my own bat, went back to my next 6 monthly checkup, "Oh your results are looking good, that's the pump for you", really is it? I haven't been using it for 5 months, here, have it back. "but you can't stop using it now, you'll get bad control" "I'm not using it and I don't have bad control". Just like talking to a brick wall. And now every time I'm there I still get the hard sell.

Didn't find it really any more convenient than carrying a pen either, the pen and meter goes in a bag or a pocket and comes out when needed, easy. And you still need to do blood testing so you're still carrying kit anyway. If it combined bm testing and automatically dosed that'd possibly get me back onto it but to me the advantages are overstated and the disadvantages ignored.

But, most people do get on with it and I can see why but no, not for me. Something worth trying if you can.

El Capitano

ollie_lucas1985 wrote:

and out of sheer interest what is everyones HbA1c results?

6.2 at my last check-up.

I’m a Type 1 Diabetic. Unusually, I’ve was only diagnosed 18 months ago and I’m 47. Since being diagnosed, I have put on a bit of weight, but this is a result of both being ‘middle aged’ as well as the insulin, which because of the way it works, does increase the likelihood of weight gain.

Because I exercise a lot and eat a reasonably health diet, I’m able to keep my condition under control using only basal (slow acting) insulin, injecting just once a day.

Losing weight does become an issue as if you cut down on your food intake, the likelihood of getting a “hypo” increases. The same issue becomes apparent if you try to increase your level of exercise, without increasing your calorie intake. It does become a very fine balancing act.

It took me the best part of 6 months last year to lose 8lbs.

meanredspider

Sir Steve Redgrave's a diabetic and won his 5th medal after diagnosis at 35. He's type 2 but insulin-dependent and a pumper. Shows, though, what can be achieved.

Northwind

Oh, forget Steve Redgraves- Halle Berry is a type 1 diabetic. Insert your own injection joke here.

Another random one is Brett Michaels from Poison- diagnosed at 6, didn't stop him from making sex videos with Pamela Anderson Or Sugar Ray Robinson... When I was younger the role model they always gave us was Harry bloody Secombe.

El Capitano wrote:

Losing weight does become an issue as if you cut down on your food intake, the likelihood of getting a “hypo” increases.

Or, just reduce your insulin dosage appropriately :? This is what I was talking about earlier, these days you don't feed your dose, you dose for your feed.

bfreeman0

Did some research, basically we will plan the exercise in advance, measure her blood sugars then depending on that have something to eat.
Then go for a ride, make sure an energy drink is taken, just in case of hypo. We'll do longer and longer distances, changing the routine to suit her.
After a ride take her blood sugar levels and keep a note of it for further reference. If her levels drop quite rapidly will have to either decrease the distance or increase food eaten before.

Northwind

Or adjust dosage before. If the idea of the exercise is to lose weight then don't fuel it, reduce the need for fuel instead. Within reason of course...

I fuel my exercise because I'm cycling because I like it despite the horrible health benefits But if you're exercising to lose weight you need to be burning more calories than you're putting in.

Fenred

Northwind is right, doseage adjustment in advance. This will be trial and error as everone reacts differently to different forms of exercise.

Plus DONT take an energy drink to treat hypos, take fast acting carbs ie Glucose or (the new industry standard -Jelly babies!!) Dont use chocolate as fat content takes too long for the body to break down. She wont need an energy drink to start with for the short distances you'll be starting her with,

Only other bit of advice would be to test mid-ride also, just to see whats going on...