diabetes type 1 problems need help

[kieran.taylor]

hey guys i havnt been on here for quite some time but i started up this thread just for like advice that maybe somebody could give me,,, basically iv been a type 1diabetic since 2002 when i was 12 im now 19 going on 20 and in the first few years of having diabetes up until about 2 years ago things were fine a few addmitances into the hospital due to high blood sugar levels but nothing since but throughout the past 2 years things have been really bad if im telling the truth basically heres where the list begins...

im currently on 4 insulin injections a day 10 units of novorapid in the morning another at lunch another at 5pm along with a long actiong lantus insulin roughly around 1030pm to get me through the night but to tell the truth for about the past year i have been taking the lantus insulin at 1030pm of a night and that is all no novorapid insulin

i cant remember the last time i checked my blood sugar levels it has been that long since i have last tested them i eat sugary foods including sweets and sugary drinks which i am not meant to drink and most days i find myself not having proper meals its almost as if im in a state of denial about the whole thing even tho i have had diabetes type 1 since mid way 2002.

its like i refuse to beleive its there i dont feel sick in myself i feel fine but i am very worried because it has been that long since i have been this way with my foods diet and insulin injections iam afraid now that if i go back to my usual injections of 4 a day i will most defiantely have a hypo and it teriffies me to be honest

i was just thinking that it has been so long since i have been in the proper routine i am meant to be in could i ever go back to it ,,it frightens me to think day in day out how long will i exist on this type of lifestyle plus i am a smoker too have been for the past 3 years or so... and last year i missed a lot of hospital appointments sadly through my own fault of being afraid of what they would say to me if i whent ,, im just really worried any advice would be very very much appreciated,

kidn regards
kieran

 

[ham79]

You've got 2 choices forget everything you know and cross your fingers you don't wake up in hospital after time in a coma being pumped full of drugs or pull your finger out get to the clinic and do whats right for your health and your families peace of mind. Coke and mars bars ain't worth it when I was taken in to hospital my organs were shutting down and I nearly died in front of my 2 wee boys not fair but my fault you know what to do.
Good luck make a fresh start and all the best for next year

 

[fergus]

Hi Kieran,

You're not the first diabetic to have ignored the risks until you can ignore them no longer. Some of us needed an epiphany before we straightened ourselves out but you sound ready to get it together now. You really don't wan't to leave it until your eyesight fails, the dialysis machine beckons or you lose a limb.
Don't get the risks of hypoglycemia out of proportion. Provided you have awareness symptoms, hypo's are easily and quickly treated. The effects of your persistently sky high blood glucose won't be so easily rectified.
Start testing now. Ignorance of your bg levels won't protect you from their effects and if you leave it much longer those effects will be permanent. Get yourself some testing strips on Monday morning. Test your blood glucose before breakfast, lunch, dinner and bed. Tell us the results.
We're here to help, not to judge. You need to help yourself first though.

fergus

 

[Angeldust]

I was exactly the same. As the Doctors are saying, I pulled the short straw. They can't understand how everything that has happened HAS happened in such a short space of time.
Sorry for this really long rant.

I was in complete denial. I thought, 'Hey this isn't fair, I'm so young.. I'll live a little now and deal with it in a few years'. Well unfortunately it just doesn't work like that. Basically I ignored it. Wouldn't go to appointments. My a1c was 16. For the best part of two years I didn't test. Drank coke, ate cake, got stupid drunk, didn't test. As far as I was concerned, I was not diabetic.

Well, my body was in constant Ketosis. I started wasting away despite eating all the time. My nerves all became damaged and my vision started going. Eventually I started vomitting non stop. I mean absolute never ending. I thought I was going to die. I spent most of 2008 in hospital hooked up to machines, with feeding tubes stuck in my jejenum because my stomach is now destroyed. I needed a jejunostomy eventually (i dropped to under 6 stone). Which is two tubes stuck inside your body, with one COMING OUT of your stomach. Hooked up to feed machines for 18 hours a day. I never thought I'd see the other end. But here I am. I'm doing good.

So I have:

Severe gastroparesis (paralysis of the stomach, vagus nerve which controls stomach function has been completely destroyed by high blood sugars)
Autonomic neuropathy (completle nerve damage to the autonomic system and digestive tract)
Peripheral neuropathy (from my feet all the way up my legs and my hands)
RETINOPATHY (scariest thing of all. I've had lasers 7 times. Getting more next week IF they have space to laser. It will not settle at all)
And my albumin urea shows protein leaking from my kidneys

This is a case of the extremities. I'm sure there are a lot of you here who have had periods of denial and done the same but been lucky enough not to suffer any damage. But this is a warning. It could happen.

Sorry to lecture but I don't wish any of this on anybody. Start taking control now. Once you do, I promise it feels so good and you will want to keep it up. Also, the best thing I ever did was get rid of that **** lantus on my own terms and switch to levemir. Something I would look into. It made me feel so much happier very quickly. I think lantus is a horrible invention. Also, check DAFNE. Best thing I ever learned about. Learning my insulin to carb ratio made it possible for me to feel completely normal and worry a lot less. I got my hbA1c down to 6 thanks to DAFNE. I eat what I like when I like. (when I'm not having a gastroparesis flare up .. I suppose I can't really eat what I like but life is a lot better).

I'm gonna write a book, make some videos, start some gastroparesis awareness stuff because there is not enough. Hardly any at all.

So yep. Start taking control now. I promise you will feel better.
All the best,

Linda

 

[jopar]

You need to ask to go back to your diabetic clinic as well, don't worry about what they might say, they want judge you over what you have or haven't done in the past..

They will have met many a diabetic similar to your self, the good part it that they do realise helping some-one who is asking for help is a lot easier than helping some-one who isn't...

Explain your fears of hypo's etc, and any other concerns or fears you have about/with controling your diabetes and you be surprised with what they can come up with to help lead you on your way to good control..

 

[Katharine]

Many complications from high blood sugars are reversible with prolonged normal blood sugars.

You will have had a hellish time over the last few years with unpredictable morning blood sugars due to the dawn phenomnenon/ unpredictable growth hormone release. It will take another three years for this to settle down to normal adult levels but the main take home message is that you can make a difference to your immediate and long term health by getting in gear now.

You can visit dsolve.com for more information at the "How to" course.

 

[kegstore]

Many complications from high blood sugars are reversible with prolonged normal blood sugars.

eeek Katharine, don't leave us in suspense like that! Which ones are reversible?

 

[ham79]

Angeldust what an amazing person well done what a come back I applaud you and your drive. Look forward to your book your ace

 

[donnellysdogs]

I think most type 1's will have had some complacency during some part of their journey with diabetes. However, you are young enough to turn yours around.

Please do it now. It seems as though something has made you realise that you aren't doing yourself any favours with your diabetes.

I too, have done exacly the same as you. With the aid of an excellent GP (not hospital consultant) he got my levels back to normal with 3 months, and I have not looked back with managing my diabetes again.

Is it really too much bother to do a 30 second blood test? How long does it really take to do your injections-mine are less than 30 seconds. You have so much time in a day and it takes less than 5 minutes to manage your diabetes. You have to get it in perspective.

Life is short enough without making it shorter and horrible with complications, I didn't realise this until I was in my 40's, but you don't want to wait this long until you realise that life is for living but with 5 minutes in each day for a bit of diabetes management time.

Go to your GP and be honest with him how much you are abusing your diabetes. Tell him why you gave up managing and explain that you really want to get it in control again. Kevin Mabbutt (Spurs and England pfootball player) was fantastic at managing his diabetes, it never stopped him doing anything, and neither should it with your life (unless you want to be a pilot or lorry driver). Book up a double appointment at the end of GP's surgery (you can rattle on if necessary then without annoying other patients waiting).

You will get loads of support from this website and forum. Please, it sounds as if you have reached some sort of realisation as to thinking you better manage your diabetes better, take the next step now and see someone who will listen to you and give you the attention that you need at the moment. It mightn't be an up hill climb. PS....I used to do my injection 10pm at night, but used to get regular, frequent severe hypo's, it was changed to teatime, and it is very rare that I will go hypo during night....all the best Sha

 

[Debloubed]

Kevin Mabbutt (Spurs and England pfootball player) was fantastic at managing his diabetes

it's Gary Mabbutt and he's ace! When he was diagnosed (in the days they admitted you and made you inject into an orange) his Dad visited 3 Docs who all said that Gary should end his career but they asked a 4th who said go for it! Very inspiring.

 

[Angeldust]

Angeldust what an amazing person well done what a come back I applaud you and your drive. Look forward to your book your ace

Thank you very much.

And Katharine.. mine aren't. There is no cure for gastroparesis. I have kept my hba1c at 6 and my problems get worse.

I realize that this is not 'normal' and that for most of you (fortunately) things won't get to this stage.
This was all by the age of 23 after only being diabetic 4 years. I'm 24 now.
It would be so much easier to give up.
But you gotta keep on keeping on.

And I'm here now to help stop people like you, Kieran, end up the same way.

 

[Katharine]

Gastroparesis is indeed extremely difficult to reverse but Dr Richard Bernstein thinks it is possible and there have been some reported improvements (not necessarily complete) in his forum members.

One of the really pain in the bum things about gastroparesis is that having it makes it much harder to get blood sugars under control because your meal response is so unpredictable.

Once you have sustained long term tissue damage it is hard or impossible to reverse. Eg if you have bled into an eye or have very impaired foot circulation it is difficult to change. Retinopathy, neuropathy and moderate kidney damage are all potentially reversible. I have seen examples in my own patients and other self reported cases.

 

[Angeldust]

Retinopathy? Honestly? Becuase I've had to ignore the fact I can hardly see anything because thinking about it makes me go insane. Could you tell me more because nobody has ever told me this before. All I get is 'this MIGHT help prevent further damage' .. But it's just not stopping.
I'm walking around with a huge floater right now awaiting more surgery next week. That will be 8 times in one year. It won't settle. I'm sick of it. It almost makes me even want to give up how much effort I put in to keeping my hba1c that low (for me) because it's having no effect on the damage.

The second my dose of gabapentin wears off the shooting and stabbing pains are unbearable.
As for my stomach, I know there is pretty much zero motility half of the time, maybe more. I am so lucky to have been referred to whom I believe to be the best specialist in my condition in the country (after having lost 100% faith and trust in the NHS). When he was removing my jejunostomy tube a few months ago and injecting botulinum toxin to the pylorus, he said there was not one single gastrointestinal contraction in the space of 7 minutes. Not one. He was surprised. Oh and also told me everything I'd been eating that week .. ha.

Sorry for the rant! It's just always surprising to me when people have so much as heard of 'gastroparesis'

 

[cugila]

It's just always surprising to me when people have so much as heard of 'gastroparesis'

Hi.
We have heard of it on here, I believe we have some previous posts where it is mentioned by members, so you are not alone. I usually have trouble remembering how to spell it.......

I wonder have you read this site about Enterra Therapy and Gastroparesis ?
http://www.gastroparesis.org.uk/

A small extract explaining it for our members who, like me may know not a lot about it:

Gastroparesis is a disorder where the stomach takes too long to empty. It is when the nerves to the stomach are damaged or stop working entirely. When the vagus nerve, which controls the flow of food through the digestive system, becomes damaged – effectively meaning the muscles of the stomach and intestines do not work effectively, gastroparesis occurs.

 

[Angeldust]

The problem regarding the pacemaker is that it has been shown to have less than a 40% chance of even working. These are risks I am not willing to take just yet. I am 24 years old and I am not risking that though I have been offered it. My consultant agrees with me as he is against surgery but only as a very last resort. The chances of it working are just too low. I mean I could be lucky and be one of those 40% but knowing my luck ...

 

[Katharine]

The problems that I have seen reversal on are: foot ulcers, foot numbness, leg numbness, albuminuria reducing and then stopping, retinal changes reversal and indeed improvement in vision.

Don't give up.

 

[iklpixi]

Hi, this is my first time using this post and so i've spent this afternoon browsing previous posts in a desperate attempt to find some honest and upfront info from others who're living this not so good reality that is diabetes...

Quick background to me: diabetes Type1 for 18 years, diagnosed with proliferative retinopathy last month - very quickly brought in to receive pan retinal laser treatment to both eyes over 4 treatments (2 to each eye) Not pleasant but definitely not the worst thing i've ever been thru. My issue with this is that although the treatment was explained to me, there's been nowhere/noone for me to go to to talk over the emotional trauma all this brings - only thing i was easily able to digest was, UNTREATED YOU'll VERY POSSIBLY BE BLIND WITHIN 5 YEARS (whit....i'm only 37, i've an 8 year old daughter, am i not going to see her grow-up, see her kids, etc, etc,....) Oh aye and also, best not to have any more kids - you've already got one why would you put yourself at risk like that.

Obviously after many tears and snotters i started doing some research and have since realised that the treatment i received was fairly aggressive and has been done at an early stage of retinopathy progression - whilst there are no guarantees i am looking at this as a kick-up-the-bum which to be honest i probably needed. Time to get my HbA1c under control - has always ran at around 9, although course i know i need to do that gradually otherwise i could escalate the situation! Oh the irony!!

What i'd love to know from all you guys is has anyone tried all the alternatives i've been reading about i.e. thiamine; benfotiamine; pyridoxamine or pycongenol - or in fact has anyone tried anything else??

I just can't believe the lack of understanding from the eye care team, i mean i was just up for my routine eye tests only to be told to come back 3 days later for my first lot of laser treatment. They're all lovely people who when i asked did sit me down and explain the facts but noone was able to empathise with my absolute terror at what this means for the future of my vision...........

Anyone out there been or going thru anything similar............ :shock:

 

[dani-a]

Hi there,
I have proliferative retinopathy in both of my eyes and have had this for the past three years. I have not had laser surgery as although being diabetic for 39 yeards I'm only 42 now. My opothomologist and I are using Avastin, which is injected into my eye, on a yearly basis. So far this has kept it under control but I have to pay for this myself, as not NICE approved.
I would be really interested to know if anyone is having this type of treatment

 

[Lynne C]

Hi you are not alone as a teenager refusing to believe you are really diabetic but you CAN'T ignore it or you are really storing up trouble for yourself. If you test your blood sugar regularly you can keep track of where you are and still do exercise and most things you want to do. The upside is that you don't need Mars bars or cake, you can get healthy, get a fit body that is more attractive to girls and hopefully live a long life without any of the side effects from high blood sugars, blindness being only one of them!

I'm sympathetic, it's not easy and I've lived with Type 1 diabetes for 30 years and it's tough but I am slim, fit and do most everything I want to do including lots of travelling round the world but this takes hard work and will power.

I wish you well but please get back on the wagon, it won't just go away.

 

[janabelle]

Hi dani-a
I've been type-1 for 21 yrs, no diabetic retinopathy, but diagnosed with RP (retinitis pigmentosa) 11 yrs ago. I've had night-blindness for years, and recently I've lost a considerable amount of peripheral vision, the usual pattern fo RP. I've been taken aback by the speed of progression, and worry how long I will retain useful sight.
I'm really interested in the Avastin treatment as I've read it can be used for RP. Could you please tell me more about it, how it works, is it painful, side-effects, etc?
I'd be very grateful for any info, many thanks
Jus