Who has actually had a complication?

[hismom]

hi,
I am a newbie on here. I must admit I have foun this thread quite worrying. I have a 13 year old son who was diagnosed in october last year. once he was put onto the base/bolus system we have got his levels in control but not ultra control (he still has to live right?) He is averaging 5's to 7's on is test meter. This thread makes me wonder what the future has for him as a lot of the posters on here have the complication that we are told we can help prevent with control. I guess you can only help it to a degree or is there an element of pre-disposition involved?

 

[Debloubed]

Hi Newbie! thankfully, the tools available to your son now have come on in leaps and bounds over the years so some long term type 1's will unfortunately, not have had the tools in order to keep such a close eye on their BG's over the years. Some, equally unfortunately will have done everything in their power but still have some problems, we are all so very different and respond differently to the treatments available. Some of us, are just very unlucky! I think you should take from this thread an awareness, your son could face some problems but if he learns that he has to take control of his BG's then he can avoid many of the major issues that can come with Diabetes. it's not all doom and gloom but we all have to be aware of the problems that can occur. 5-7 are good numbers to have, very good in fact! Some will tell you they could be lower and maybe so, but your son is doing a good job so far - tell him to keep it up!

 

[hismom]

hi Debloubed,
thank you. He was diagnosed very early thanks to the insistence of my husband and myself. His first HB1AC was 9 so he didnt have too much problem and he is lucky as he was never really one for loads of sweets etc. He does miss somethings but we try and factor them in as a treat. He does get enough exercise as he is a performer and if not on stage he is rehearsing. The biggest annoyance for me is how everyone thinks he is diabetic because of his diet when in fact he had a virus. He still produces most of his own insulin at the moment but I know that will change as time goes on but hopefully we can keep some of his beta cells for as long as possible.



steph

 

[leggott]

Hi Hismom,
As mentioned earlier in this thread 2 of my kids have type 1 ages 5 & 7 and my husband has also had the condition for 25 years. Although he has no complications, I too worry about him and my kids as I believe that as with everything in life, luck does play a part. There is however lots happening at the moment and there was an articial in the Telegraph i think last week about trials of an artificial pancreas. I have been lucky enough to speak with someone at Cambridge University where they have been testing overnight control on kids, with excellent results. They are now in another phase of testing and the kids used in the trial have brought the equipment home and are using in at night time. There is other testing going on in other countries and they are hopefull that a basic artifical pancreas will be available in around 5 years. I hope that gives you some hope for the future, in the meantime it sounds like his control is very good for a child of his age, and you are doing everything you can. Leggott.

 

[kegstore]

Bear with me on this first paragraph and read it all (maybe more than once)...

The point about complications is that you just don't know absolutely who will get them and who won't. What IS known is that persistently high blood sugars will greatly increase the risk. You have two choices as a newly diagnosed diabetic - manage your condition as best you can, or just barely tolerate it and do only the very minimum required. So, if you manage the condition well and still develop complications that is very bad luck, but consider how much worse they would be if you had kicked back and basically ignored your condition. There's only one option as a newly-diagnosed diabetic: manage the condition well and stack the deck in your favour, it may not guarantee results but the outcome won't be as bad as if you'd done nothing at all.

(The other group of diabetics are those who kick back from day one, never do anything right, high HbA1c etc, and yet never get complications. Not fair is it, they're so annoying but not really worth playing Russian Roulette over?)

Also, a note on the recent media activity relating to artificial pancreas tests. I think the situation has been overplayed somewhat, claiming that "revised algorithms" combined with an insulin pump and glucose sensors are to (can now) provide the first closed loop system with autonomous action. This is not the case - the technology used is no different to that currently in use (which means it is not accurate or reliable enough to be trusted), with the "revised algorithms" allegedly providing the correct flow of insulin. This is just not true, no amount of fancy programming can get around the fact that the glucose sensors are not measuring blood sugar at all, and can be up to 30 minutes out of sync with that value. Ask any T1 diabetic how quickly blood sugar can change and you can see that "artificial pancreas" isn't there yet. But CGM sensors didn't even exist 10 years ago and medical technology moves very rapidly these days, so I'm extremely optimistic we'll get there soon!

 

[Jenni_1984]

(The other group of diabetics are those who kick back from day one, never do anything right, high HbA1c etc, and yet never get complications. Not fair is it, they're so annoying but not really worth playing Russian Roulette over?)
quote]

There seems to be an awful lot of people who live life upsetting others, playing russian roulette - as you said - with their health who never have so much as a bad cold....jammy b*ggers is what we call them in Glasgow, maybe that's a wee bit too polite, but I don't want to be vulgar.

When I spoke with my consultant and optician about the changes they saw at the back of my right eye the attitude was more or less - well you've been diabetic for 20 years, it would be kind of strange NOT to see some sort of complication.

I agree that this is quite a worrying post, but then much and all as ignorance is bliss we all have to be realistic. Regardless of how well you control your blood sugar, it will never be as controlled as a non diabetic person. So over the years you have the illness you are doing your body damage - the level of the damage linked to control. Although there will be people who fly by the seat of their pants and never suffer the complications....

Not fair... but then when was life ever fair?!!

Scare tactics have never worked with me and I'm sure won't with many of you that post on here. I try to keep my chin up, watch what I'm doing and do it with a smile on my face. Of course the complications worry and frighten me, but I'm not running scared.

Since starting to post on here I have made much more of an effort to test my blood as often as I can so I think these things have got to be discussed.

Jenni

 

[LittleSue]

If it were only down to blood sugar, everyone with a history of high HbA1c would have all the complications and those in the 5s would have none. But still the risks must be taken seriously.
Sometimes feels like I have a ton weight labelled "complications" hanging above me and every high reading makes the rope fray a little more.

Diagnosed back in 1973 when the target was a small amount of sugar in the urine all the time (ie, levels of 10-12) :roll: I didn't even achieve that target (despite trying) and didn't get proper control until 3 years ago.

I've been very lucky - so far. Only complication was a minor retinal bleed - after the clinic had forbidden any adjustment to Glargine dose during the 15 month wait for a 3-day CGMS! Until then the worst finding was minor background changes after about 25 years, and with improved control now they have gone.

HbA1c frequently 8 or 9 pre-DAFNE, around 6.6 since DAFNE.

 

[hismom]

hi,
I must admit that I think some of the complications are things we are pre-disposed to . My son has been very good in his control and we will normally get his levels between 5 to 7.5 for most of the day. The only time he is high (9 to 10) is up to 3 hours after breakfast (ready brek with semi skimmed milk no sugar) and of course bedtime. His morning readings are normally in the 5's. We managed this control after around 2 months of diagnosise but he is very sensible. He has just accepted that he is diabetic and needs to get on with it. He does get fed up with all the testing and that he cant have a lie in but thats about all.

I think although there is strict control no food is completly banned as it could make him go off the rails. I do hope that he will be ok and the complications will avoid him but only time will tell. He has big ambitions for his future and hasnt lost sight of them. I think for teenagers the hardest thing is going anywhere and being aware that you are different from others,some are strong enough and have good friends around them,some dont and this is where the rebellion starts (and also complications). There needs to be more contact for teenagers with diabetes so they dont feel alone. Since his diagnosis we have only met 1 other teenager with diabetes .



steph

 

[rgarcha]

Hi guy's n gals,

Well what a discussion , Hey!!! all we have to remember is life is too short, and weather you have complication or not, why worry :?: .
We all should be greatful that we have a chance to live longer, healthy, and happy, than alot of other people out there. Example, cancer a big killer and painful one at that, MS a disease that makes life unbearble to live for, etc etc. Us guys have a condition, that means that we just need to change our life style abit, and be more aware of how we deal with general living.
My moto is live each day as if its your last, you never know what tomorrow may bring..

If you have complication, like i do; hey do your very best to deal with them, and make the most of what you have in life, not what may be or what has been.

Sorry for going on abit, i can chat for the world at times. :lol:

Rav

 

[fergus]

Just had a truly scary thought , it'll be my 30 year anniversary of type 1 next year. :shock: How time flies when you're havin' fun, eh?
Anyway, back to the original question re. complications, I may be one of the lucky ones. I had early stage reitinopathy 10 years ago, but that has gone now. Everything else seems ok, but I think the odds shited significantly in my favour when I cut the sugars and starches from my diet. HbA1c went from regular 6's and 7's, occasional 8, down to an average of 4.7 over the last 3 years. As Kegstore said, it may be no guarantee of succes, but it sure does shorten the odds.

fergus

 

[CarbsRok]

y

 

[ham79]

(Fergus meant shifted :lol: )
Anyhoo add erectile problems to the list if I was a horse BANG!!! :shock:

 

[donnellysdogs]

Hi
I have been a very lucky, longterm type diabetic, and thank my lucky stars......

I am 46. Diabetic t1 for 25 years and until last year I have not had one single complication. Last year I got told I have mild background retinopathy.

I have abused my body for years, until 2 weeks ago I smoked 20+ per day for 30 years, for 15+ years my HBA1C was above 9. Even now it still runs at 7. (I live in South Wales, UK, and my levels are meant to be good for a type 1 where I live!).

I don't recommend the abuse, I wish I hadn't, but I did. I initally looked after myself brilliantly, then I got totally blase with all of it and didn't give a hoot. For approx 3 years I have looked after myself better after a friend who is an orthapaedic surgeon told me out right that I was killing myself.

The last 9 years have been hell, but not through the diabetes but through the simvastatin's I was put on (not because of hi choleterol, but because I was type 1). They practically killed me through their side effects, so now I will do everything I can to stay healthy, through looking after myself.

I do know of at least 3 people with the same t1, same length of time etc and all of them have had complications-some kidney failure, some blind, some heart attacks. I so far, have just been lucky, but I feel I am one of very few people that can say this. So please, don't think you can get away with abusing your diabetes, very few people will

 

[Derek27db]

32yr old
T1 for 27yrs (since I was 5)

Main complication Retinopathy, 6 or 7 laser treatments between both eyes over last 3 yrs. As soon as lasers were mentioned I woke up to my overall control quickly. Eyesight is unaffected and after 2 follow-up to the eye clinic things are looking good.

Once had a one-off high protein value from my kidneys so now on Rampapril which has worked, and also helps control my high blood pressure which is another bad thing for retinopathy. Also on Simvastatin for cholesterol (It's only ever high when I lapse in taking the tablets)

Before DAFNE my sugars had always yo-yo'd and my average Hba1c was never below double figures. Almost 2yrs after DAFNE I'm slowly but surely bringing the Hba1c down, 2% reduction in 18 months to 8.4. Well chuffed with this and mean to continue it. Haven't lost weight but I have kept steady for last 12months which I believe is down to the correct insulin to carb ratios now.

Also turned into a testing/recording addict with all the blood testing, carb counting and notes taking, even created my own spreadsheet to include injection sites, calorie intake, weekly/monthly averages. Just have to work out how to do graphs :lol:

I don't get jealous of hearing about how low some peoples Hba1c's are compared to mine because I realise that I'm the only person who can improve mine and the benefits are there for me as long as I want them.

When I nail the ratio/carb thing I can start thinking about dusting off the weights set I bought to sit in the corner of the spare room.

It can easily get you down having complications or even just the constant tests/recording/injecting but if you can find the positives you can have a good quality of life.

P.S Sorry it's a bit of a scattered post

 

[goji]

I have had diabetes for 12 years. For about 8 of those years I did not have good control (Hba1cs mostly ranging between 7s and 9s with an alltime high of 11.6).

I have some background retinopathy and a possible case of autonomic neuropathy (though it is thought that this is not diabetic related).

I've got my Hba1c down into the high 5s and low 6s now - so I'm hoping to see some improvement in the retinopathy.

 

[sallywally]

I dont think this person trying to depressing but trying to seek comfort,dont so be harsh everyone deals with things in different ways .After all you have to read the posts.Also a good way of making people aware of compilcations,that maybe they didnt know about.

 

[hismom]

I agree with you sally. when my son was diagnosed we were told there are complications and this was such a bombshell. I think he is seeking reasurrance that there is a life with diabetes that isnt all doom and gloom.

 

[GlucoseKnight]

I have had Diabetes T1 for 29 years, I have mild Diabetic Retinpathy at the back of my eyes and have had 2 courses of laser treatment. I have Protein in the urine which I take Tablets to protect my kidneys and I have Necrobiosis lipoidica on my right leg which appears to be getting bigger.
My Diabetes is not well controlled although I am seeing my specialist every month and trying my best to get my levels to an acceptable level. My last hbA1c was 13.2 ... not good by any standards and teh thought of further long term complications scare me.
My feet at the moment are Ok although I do suffer from cracked heels sometimes.
hopefully you will not get any of these if you look after yourself, I am trying to get help with mine at the moment

 

[johnny37]

What about the one that no-one seems to want to talk about?

 

[sugarless sue]

Johnny37, do a search in the forum and you will find plenty on that subject.