Let me be a lesson to all of you (aged 20)

[hodor1234]

I’ve been type 1 for 3.5 years, age 20 diagnosed at 16, full time smoker. Was in quite bad control for first two years but doctor always happy with hb1acs.

I’ve noticed
Warm/burning feeling in hands and feet at night
ED
Frequently urinating whilst bgs is in perfect range
Night sweats
My bgs are lower before I notice a hypo, they are now 2.5-3 before I realize whereas they were 3.8/3.9 when I realized them.
Sometimes I get quite dizzy after sitting lying down.
Sometimes it’s hard for me to warm my feet in the cold months.

I feel it is time I face reality as it seems for all these symptoms to coexist it would be too coincidental for the cause to be anything other than neuropathy. When I was diagnosed I was so sad and embarrassed I tried to block it out until two years in i noticed the burning/warm feet at night and decided to get my bgs in check and have been in decent check since.

My bgs when I go to bed is typically between 5-9 but when I wake up it’s 12-18 without drinking/ eating for hours

It goes with out saying I’ve given up smoking and joined the gym this week. In a hope to get myself in the best posssible health.

I’m just wondering does anyone think there’s hope of my symptoms going away with enough nutrients, excercise and improved circulation that my nerves may somewhat recover and my condition will improve. I do not need relief medication as the burning is not that painful yet. I’ve heard of some people’s nerves repairing but there’s no medical evidence.

Let me be a lesson to all young diabetics that want to be normal and ignore there diabetes. I have thrown away the opportunity to live a nice life and have a wife and kids, grow old in comfort. Two years of neglecting my diabetes has cost me the next fifty years of happiness. What angers me is doctors say if you don’t look after yourself there will be complications way down the line, those complications are not far down the line at al 2YEARS!!! If you’ve been in bad control for a while and feel fine your lucky, but rest assured there is damage being done every minute your bgs is high, it’s not until you feel it it is too late. My heart is shattered, I’m a 20 man who can’t have proper sex and kneels on the side of his bed every night begging god for one more chance, if I could turn back the clock I would have never let my bgs rise above 8 or below five, I would have never smoked and I would’ve lead a much healthier life. But I can’t. I was devastated to be diagnosed with t1D thinking it would ruin my life, what I wouldn’t do to be a newly diagnosed T1D equipped with the right knowledge and medication to live a long, healthy and happy life.

 

[Robinredbreast]

Hi @hodor1234 and welcome. Life is cruel sometimes, but you have turned things a round by giving up smoking and going to the gym, that's quite an achievement, so well done for turning your life around and give yourself a pat on the back.

Quote: No one can go back and make a brand new start, anyone can start from now and make a brand new ending
I wish you all the very best for the future.

 

[Mbaker]

It is great that you posted this. But you don't get away that easily. You're just 20, so consider your body like a snakes skin which sheds. Whilst no one can guarantee that you will / can reverse the complications you are experiencing, there is no reason why you can't give yourself every chance. I had terrible symptoms including neuropathy (I believe @Jim Lahey also did); we both have reversed this with no twinges whatsoever.

I thought I had less the 6 months to live, but decided to fight....and boy has it been worth it. I did this at 48, so you have many more physical advantages. Nerves take ages to potentially resolve, but do not give up. Treat your conditions holistically, diet, exercise, sleep, positive thinking and consistency. I would be so happy for you to report in a few months that you are feeling better.

 

[CearaRed1073]

oh, let me give you some words of wisdom on this subject, for whatever they might be worth. i have been T-1 since 1978. i was thinking i would be lucky to see age 50, but now, i may be around for another decade, possibly more. and while there are things i cannot speak to you to (i live in the US), i can tell you if you make changes (make them subtle, set SMALL AND ACHIEVABLE goals, and know that you are human and you WILL fail sometimes), you will prevent further damage to yourself. when i started, it was urine testing and in my opinion, much worse than the blood testing we do now. and so far, knock wood, the only complication i have had is expensive cataract surgery in 2008.

only started exercising regularly last year, but i have lost weight (which may be due to the fact i haven't been hungry since 2015, but i don't know and the doctors (such as they are) haven't found anything wrong with me (for all i know, i could have neuropathy in my GI tract, but no one will test me, nor tell me they think i'm wrong). i have fallen multiple times over the past two years (fractured my skull in three places last Halloween), but right now i cannot remember the last time it happened to me.

being in tight control is all well and good in theory, but the reality of it is something altogether different and anyone who isn't T-1 just won't understand any of this.

i think you are trying to juggle too many balls and if you continue this way, not only will you burn out (NOT GOOD), but you could end up dropping all of them. so step back and try juggling three scarves (much easier than balls in my opinion).

if you want to chat, let me know. if not, i wish you luck with the next 50 years of your life.

 

[poemagraphic]

I’ve been type 1 for 3.5 years, age 20 diagnosed at 16, full time smoker. Was in quite bad control for first two years but doctor always happy with hb1acs.

I’ve noticed
Warm/burning feeling in hands and feet at night
ED
Frequently urinating whilst bgs is in perfect range
Night sweats
My bgs are lower before I notice a hypo, they are now 2.5-3 before I realize whereas they were 3.8/3.9 when I realized them.
Sometimes I get quite dizzy after sitting lying down.
Sometimes it’s hard for me to warm my feet in the cold months.

I feel it is time I face reality as it seems for all these symptoms to coexist it would be too coincidental for the cause to be anything other than neuropathy. When I was diagnosed I was so sad and embarrassed I tried to block it out until two years in i noticed the burning/warm feet at night and decided to get my bgs in check and have been in decent check since.

My bgs when I go to bed is typically between 5-9 but when I wake up it’s 12-18 without drinking/ eating for hours

It goes with out saying I’ve given up smoking and joined the gym this week. In a hope to get myself in the best posssible health.

I’m just wondering does anyone think there’s hope of my symptoms going away with enough nutrients, excercise and improved circulation that my nerves may somewhat recover and my condition will improve. I do not need relief medication as the burning is not that painful yet. I’ve heard of some people’s nerves repairing but there’s no medical evidence.

Let me be a lesson to all young diabetics that want to be normal and ignore there diabetes. I have thrown away the opportunity to live a nice life and have a wife and kids, grow old in comfort. Two years of neglecting my diabetes has cost me the next fifty years of happiness. What angers me is doctors say if you don’t look after yourself there will be complications way down the line, those complications are not far down the line at al 2YEARS!!! If you’ve been in bad control for a while and feel fine your lucky, but rest assured there is damage being done every minute your bgs is high, it’s not until you feel it it is too late. My heart is shattered, I’m a 20 man who can’t have proper sex and kneels on the side of his bed every night begging god for one more chance, if I could turn back the clock I would have never let my bgs rise above 8 or below five, I would have never smoked and I would’ve lead a much healthier life. But I can’t. I was devastated to be diagnosed with t1D thinking it would ruin my life, what I wouldn’t do to be a newly diagnosed T1D equipped with the right knowledge and medication to live a long, healthy and happy life.

Hi Ho

This place is a 'god'send my friend. You will find great support here at all different levels.
Some members know far far more than most GP's and DN. they will be able to give you sound advice (not that anyone is able to give medical advice (quite right too). But people that have been/are where you are now.

Others who will lend an ear... that can be a huge help.

Life is just starting for you mate... and there is a long road ahead full of great things and a few pot holes to avoid.
Pay attention. Enjoy your journey.
Po

 

[MeiChanski]

Hello!
I'm very sorry you are going through this. I can say that all type 1 diabetics never really had it easy, some learned the easy way and some learned the hard way. Unfortunately I learned the hard way - lots of DKA and infections as a teenager. It wasn't easy for me or my family until my team introduced me to basal/bolus regime and things did change. However it went the opposite direction, too many severe hypos and I haven't been the same person since. However my consultant is hopeful things will get better, with his tough love and booted my backside, he prescribed different insulins and sensors to help me. I can promise you with the right team, good support network (we are always here, just a click away) and a good consultant, they will help you.
You've quit smoking - which is a big step up, you're doing everything you can. If you have any questions about the control or anything, we are here.
What I will say though please get in contact with your diabetes team and if you're waking up high and if you're on the basal-bolus regime, your background insulin might need a tweak. But your diabetes nurse can help you with some adjustments,

 

[Deleted Account]

Well done on seeing the problems and making the change to your life.
One thing worth considering is a basal test. Your long acting insulin should maintain your bg overnight. If not, you may need to increase your dose.
Take care... could be worth setting an alarm to check your bg through the night as the high bg may be due to Dawn Phenomenon.
Good luck with the new you!

 

[LooperCat]

Welcome to the forum lovely, sending a big hug. There is hope, I promise. I have had T1 for twenty years now, and like you, spent a lot of time ignoring it because I wanted to be normal, and doing the bare minimum of self care in order to not die - basically I took my Lantus at night and didn’t bother with testing or Novorapid for months at a time. I had the burning in my legs and feet that you talked about, and eventually they got very painful and my toes list feeling altogether. I got out of the bath one day about 18 months ago and looked down to see one of my toes actually bent back under my foot and I didn’t feel a THING. That, alone with a couple of other things that happened around the same time gave me a real jolt. I joined the forum looking for some support and found it. I’ve got my levels down to pretty much non-diabetic (with the aid of some of the new tech, and a low carb diet) and my feet and legs are totally back to normal - and the damage I’ve done to my eyes has healed too (enough that I’ve passed the enhanced visual test to drive medium sized lorries and buses). You’re pretty young, so given the right conditions, your body stands a very good chance of healing itself. Hang around the forum, come and visit the “type 1 stars” thread - there’s a bunch of us there who chat about our day to day living with it and it’s so helpful.

 

[Freema]

I’ve been type 1 for 3.5 years, age 20 diagnosed at 16, full time smoker. Was in quite bad control for first two years but doctor always happy with hb1acs.

I’ve noticed
Warm/burning feeling in hands and feet at night
ED
Frequently urinating whilst bgs is in perfect range
Night sweats
My bgs are lower before I notice a hypo, they are now 2.5-3 before I realize whereas they were 3.8/3.9 when I realized them.
Sometimes I get quite dizzy after sitting lying down.
Sometimes it’s hard for me to warm my feet in the cold months.

I feel it is time I face reality as it seems for all these symptoms to coexist it would be too coincidental for the cause to be anything other than neuropathy. When I was diagnosed I was so sad and embarrassed I tried to block it out until two years in i noticed the burning/warm feet at night and decided to get my bgs in check and have been in decent check since.

My bgs when I go to bed is typically between 5-9 but when I wake up it’s 12-18 without drinking/ eating for hours

It goes with out saying I’ve given up smoking and joined the gym this week. In a hope to get myself in the best posssible health.

I’m just wondering does anyone think there’s hope of my symptoms going away with enough nutrients, excercise and improved circulation that my nerves may somewhat recover and my condition will improve. I do not need relief medication as the burning is not that painful yet. I’ve heard of some people’s nerves repairing but there’s no medical evidence.

Let me be a lesson to all young diabetics that want to be normal and ignore there diabetes. I have thrown away the opportunity to live a nice life and have a wife and kids, grow old in comfort. Two years of neglecting my diabetes has cost me the next fifty years of happiness. What angers me is doctors say if you don’t look after yourself there will be complications way down the line, those complications are not far down the line at al 2YEARS!!! If you’ve been in bad control for a while and feel fine your lucky, but rest assured there is damage being done every minute your bgs is high, it’s not until you feel it it is too late. My heart is shattered, I’m a 20 man who can’t have proper sex and kneels on the side of his bed every night begging god for one more chance, if I could turn back the clock I would have never let my bgs rise above 8 or below five, I would have never smoked and I would’ve lead a much healthier life. But I can’t. I was devastated to be diagnosed with t1D thinking it would ruin my life, what I wouldn’t do to be a newly diagnosed T1D equipped with the right knowledge and medication to live a long, healthy and happy life.

well give the strickt program a chance before you judge yourself to eternal lonelyness.. actually the stabillity of a relationsship many times is the support many need to keep on the narrow road of good control... don´t think so black and white please noone has asked to get any kind of diabetes ... I think you should give at strickt control a chance and make it part of your background instead of a curse that deems your whole life a disaster

and by the way stay in here and make friends ...and get support along your way

 

[JAT1]

Congratulations on quitting smoking. That done, you can do anything imo. Once you get your blood sugar levels in range, all your complications will start to lessen. This forum has plenty of examples of that.

 

[hodor1234]

Thanks for all the messages. I realize it could be up to two years before I notice any improvement if I have any improvement at all but I will fight tooth and nail to get back whatever health I can. The support is appreciated

 

[kitedoc]

Hi @hodor1234 ,
Have you actually seen a specialist and had your symptoms fully checked out?
Couñd it be that you have unfortunately jumped the starter's pistol and assumed the worst?
There may be other causes for some or all of your symptoms and wallowing in despair might be premature.
Please ensure you see a diagnostician who will listen carefully to you, examine, test and investigate your troubles carefully and thoroughly to sort and and treat whatever is really and truly happening to you.
Best Wishes.

 

[hodor1234]

Yes I’ve seen a gp she done some tests to rule out other causes, my spleen is enlarged and my liver function is high. She doesn’t know why

 

[kitedoc]

So sounds like some more investigation is needed to work out what is happening. But nothing seemed to pointing to a definite diabetes cause so far?

 

[Robinredbreast]

So sounds like some more investigation is needed to work out what is happening. But nothing seemed to pointing to a definite diabetes cause so far?

As the OP is only 20 years old and a lot of medical conditions/complications have arisen, it could point to his uncontrolled diabetes as previously mentioned, but more investigations need to be done.

 

[kitedoc]

We do not have proof of complications arising at this stage nor confirmation of same from tests so far though all the tests performed have not been reported on, only the abnormal ones,

 

[novorapidboi26]

I am personally surprised at the damage you think has been done over such a short space of time......

I was diagnosed at 15 and was on a mixed insulin........I smoked, drank, took recreational drugs, so my body took a beating diabetes wise, and for about 5 or 6 years, was probably in DKA quite a few times with no hospital treatment.....and for the most part I am complication free.....some eye issues only....

the point I make is that you are likely to be in a much better conduction than you feel you are in......and now you are making positive changes, which is great...

 

[hodor1234]

I am personally surprised at the damage you think has been done over such a short space of time......

I was diagnosed at 15 and was on a mixed insulin........I smoked, drank, took recreational drugs, so my body took a beating diabetes wise, and for about 5 or 6 years, was probably in DKA quite a few times with no hospital treatment.....and for the most part I am complication free.....some eye issues only....

the point I make is that you are likely to be in a much better conduction than you feel you are in......and now you are making positive changes, which is great...

I was too, but I know of a girl in my local area who was diagnosed about 2 years before me and completely ignored it, took no care of it whatsoever now she has damage to her eyes and can barely walk, has too take her shoes off at work to massage her feet, so I’m five years she has done this damage much worse than me, she didn’t smoke.

I took my apidra most of the time but never took my night time Lantis, sometimes goin weeks with out it, bgs was in extremely poor control for two years in my opinion although hba1c was in 50s which is not great but did not concern my diabetic team or my gp, but I know my control was far worse in the 12-24 range quite a bit.

I have burning in my hands and feet at night- peripheral neuropathy
I just recently came back from the gym and went to check my bgs just to see what it was, it was 2.8 and I couldn’t really notice apart from a bit dizzy, I couldn’t feel my heart beat faster or the shakey/weak arms that I once felt at a 3.9 - autonomic neuropathy

Sometimes I get dizzy standing up- autonomic neuropathy

Can’t empty my bladder fully need to **** all the time and often **** the bed after drinking alcohol

I genuinely hope I am wrong but I’ve got to be tough on myself to make myself as healthy as possible, if I’m wrong and something else is causing the symptoms then happy days and I’ve just gotten my bgs in check quit smoking and am all around much healthier. If I’m right, and unfortunately by observing my own body and comparing it to the information readily available online and in this forum, I think nerve damage is the reality I now face

 

[Robinredbreast]

Sometimes people can go a very long time with uncontrolled diabetes and don't have any or many medical complications, but other's do, we all know our own bodies and notice when something is going wrong and in this case somethings are clearly going wrong.

 

[Robinredbreast]

I was too, but I know of a girl in my local area who was diagnosed about 2 years before me and completely ignored it, took no care of it whatsoever now she has damage to her eyes and can barely walk, has too take her shoes off at work to massage her feet, so I’m five years she has done this damage much worse than me, she didn’t smoke.

I took my apidra most of the time but never took my night time Lantis, sometimes goin weeks with out it, bgs was in extremely poor control for two years in my opinion although hba1c was in 50s which is not great but did not concern my diabetic team or my gp, but I know my control was far worse in the 12-24 range quite a bit.

I have burning in my hands and feet at night- peripheral neuropathy
I just recently came back from the gym and went to check my bgs just to see what it was, it was 2.8 and I couldn’t really notice apart from a bit dizzy, I couldn’t feel my heart beat faster or the shakey/weak arms that I once felt at a 3.9 - autonomic neuropathy

Sometimes I get dizzy standing up- autonomic neuropathy

Can’t empty my bladder fully need to **** all the time and often **** the bed after drinking alcohol

I genuinely hope I am wrong but I’ve got to be tough on myself to make myself as healthy as possible, if I’m wrong and something else is causing the symptoms then happy days and I’ve just gotten my bgs in check quit smoking and am all around much healthier. If I’m right, and unfortunately by observing my own body and comparing it to the information readily available online and in this forum, I think nerve damage is the reality I now face

Sorry if this has already been asked, but are you going back to your GP, because your symptoms do need more investigating ?