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

[Notorious]

OP try not to be too hard on yourself. Many T1s go through a stage like this in their teens (sadly). There is an element of luck around susceptibility to complications too. I've had T1 for 12 years, have always had very good control with low hba1c and high time in range, I've never smoked and am a regular exerciser. And yet I too have some numbness in my big toes.

It's just not possible to be in range 100% of the time, but you've made a great start by stopping smoking and starting to go to the gym. Best wishes.

 

[Gran25]

I am wondering if there is a support group for young T1s in your community? While the forums are a really valuable resource, sometimes in person support with people closer to your age can be a literal life saver... no one else gets it better than someone else in the same boat. Also, sometimes taking an advocate to a doctor's visit is helpful to make sure you get the questions and answers that you need. Many people become instantly tongue tied at the doctor's office. And big thumb's up for quitting smoking! One of the hardest addictions to beat. If you can do that, you can do this Looking forward to hearing about your progress!

 

[Grant_Vicat]

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 @hodor1234 I thought I'd post you my experience at your age, having been Type 1 since the age of 11 months:
It was at this time that King’s College Hospital noticed the first signs of retinopathy, a word I had not yet encountered. I was well aware that many elderly diabetics were blind and I was reminded of this every time we drove past the iconic 1930s St Dunstan’s Home in Ovingdean, a little East of Brighton. Their Website has a section on diabetes. With this in mind it is remarkable that I am writing these words some thirty years later (now forty). One evening, in my first year at King’s, I was sitting at my desk, amazingly doing some work, when I was suddenly unable to see out of my right eye. It was as if a bottle of drawing ink had been poured into the eyeball. Various ideas flooded into my imagination, almost as rapidly as the real substance into my sight. Blind panic took control. I ran down Champion Hill and across Denmark Hill, straight into the Hospital, I would guess in under sixty seconds. Arriving at Accident and Emergency, I was greeted by the ubiquitous unsympathetic gaze of a receptionist:
“What’s your problem?”
“I can’t see out of my right eye.”
“Who sent you here?”
“I did.”
“Did you contact your GP?”
“Listen, I’m an outpatient here and I’m diabetic” (magic words).
“Oh, I see, do you know your Hospital Number by any chance?”
“Yes, A153034.”
“Fantastic. Ah, Mr Vicat. I see from your notes that retinopathy has been noted. I’ll get someone to attend to you.”
A doctor duly appeared and informed me that I had had a haemorrhage and that nothing could be done until it had cleared enough to see what damage had occurred. I was put under the care of Mr E.W.G. Davies, a short, wire-rimmed-bespectacled man with whispy grey hair, twinkly beaming eyes and an everlasting supply of Fox’s Glacier Mints stuffed into his white coat. I found this ironic, seeing that the majority of his patients were diabetic! During one of his consultations in my second year he asked me about my life. I told him that I was living in Kensal Rise; that I cycled into King’s College in the Strand every day; that I played squash; and that I drank moderately (I’m sure he didn’t fall for this). His response was that I should stop burn-ups on the Edgeware Road, that I should avoid squash, moderate my alcohol intake, and that I should shun aerobic exercise or anything that would make me red in the face. If I did not heed his words, I would be blind by the time I reached twenty-three.
“Thank you” I said. “Do you realise that in one sentence you have ruled out all the finer points of living?”
To say that I was depressed would be accurate, but somewhat insufficient. What was the point of carrying on in London? Was I likely to experience any of the ambitions I might entertain? Would I ever see my children? Worse still, would I ever have any? Would I ever drive and explore my country, let alone the World? How could I learn any more music? These were just some of the thoughts that spun round in my head, as though my brain had been sucked into a tumble dryer.
All this took place in early 1979. I also smoked, but didn't mention that. In 1982 I got married (we started going out 39 years ago tomorrow!), and in 1984 our daughter was born. She has a gorgeous daughter who will be 8 in November. I still drive, do portraits and play the piano and organ. I fully understand your emotional turmoil, but your awareness and determination will help you and you have the refinements of modern technology very much on your side. Already the posters above have given excellent advice and I am sure more will come your way. I wish you an even better future than I have had since 1979, and that's not bad!

 

[kitedoc]

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

You say that your diabetes team and GP accepted HBA1Cs in the 50 range. If so that sounds like ignorance or acceptance that things could be worse.
There are others causes of pins and needles at night apart from diabetes, and of dizziness on standing and if you have had a lot of high bsls the early signs of a hypo can be absent without it being an autonomic neuropathy issue. Similarly with one's bladder function, other things apart from neuropathy might be the cause, and alcohol consumotion is a possible factor to consider. All this is why i suggested earlier that you see a diagnostician since your GP has done some testing and certain things may ir may not have been ruled out but other findings need explanation and probably more testing.
There is every reason to imprive your diabetes control and i urge you to consider all the options for doing this.
If you look at the Home page under either Type 1 diabetes or living with diabetes - there are several diet options and these influence how the insulin regime will be and what level if control is possible. Once you have you got through to the end of all the investigations and how things ate to be dealt with by all means PM me.
Best Wishes on things being sorted quickly and resolved expeditiously

 

[Freema]

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

you might get some help if having a dietist look through your eating habits as well https://www.bloodsugar101.com/diet

, maybe you are not optimal in vitamins and minerals to counteract the damage of overall very raised blood glucose... it seems most damage occur when the level of blood glucose is over 7.5 mmol https://www.bloodsugar101.com/

 

[hodor1234]

According to my doctors and my glucose monitoring 4-9.9 is the safe range??

 

[farheen123]

Hello, newbie here. I still have to get used to this website/forum/blog. Its been a month since I've been diagnosed and I've been really upset recently but the replies here have given me some motivation after such a long time. Thank you!!

 

[LooperCat]

According to my doctors and my glucose monitoring 4-9.9 is the safe range??

Personally, I try to keep mine in the 3.8-7 range, aiming mybolis calculators for around 5 wherever I can. That’s as close to non diabetic levels as I can get.

 

[hodor1234]

Update: it’s only been a week since I really got myself into gear and stopped smoking, my urination has become more steady and I’m not urinating every single hour as I was.

The burning in my hands and feet’s has gotten noticeably worse and it’s sometimes sore during the day, not just at night as it was before

 

[enzina]

Hi @hodor1234 ,
Well done for stopping smoking!I can confirm any kind of pain is getting temporarily worse during the detox process. It will get (much) better, at the moment your cells want the nicotine and the other countless toxins so badly. They wanna trick you into giving up giving up. That's why so many people relapse.
Stay strong, all the best.

 

[Fairygodmother]

Hi @hodor1234, have you asked your GP to refer you to a Consultant yet? Sometimes we have to tell them what we want and need before we get it.
It seems to me that like @kitedoc says you need further investigations by a specialist or two, so when you see a Consultant don’t hesitate to ask for that too.
Has your GP done a full blood count yet too? This would show the state of your liver and kidneys and also reveal whether you’re lacking in areas of nutrition, particularly vitamins and minerals.
And hugs! Lots of hugs!
Go forward, fight for what you need and may the T1 force be with you.

 

[hodor1234]

Hi @hodor1234, have you asked your GP to refer you to a Consultant yet? Sometimes we have to tell them what we want and need before we get it.
It seems to me that like @kitedoc says you need further investigations by a specialist or two, so when you see a Consultant don’t hesitate to ask for that too.
Has your GP done a full blood count yet too? This would show the state of your liver and kidneys and also reveal whether you’re lacking in areas of nutrition, particularly vitamins and minerals.
And hugs! Lots of hugs!
Go forward, fight for what you need and may the T1 force be with you.

Ya we have done hundreds of various tests, i think they suspect neuropathy but told me tighten up control and see if it helps. I’m 99% sure they are right

 

[Fairygodmother]

Ya we have done hundreds of various tests, i think they suspect neuropathy but told me tighten up control and see if it helps. I’m 99% sure they are right

And with luck that’ll work - there’s a heartening post from Mel to show it can be done

 

[hodor1234]

And with luck that’ll work - there’s a heartening post from Mel to show it can be done

Could you link that post for me please

 

[LooperCat]

Could you link that post for me please

This one

https://www.diabetes.co.uk/forum/threads/healed-eyes.160559/

 

[hodor1234]

Some good news, sort of. As I mentioned in the original post, my hypo awareness had changed dramatically. I couldn’t feel them as obvious as before. I used to get the weak arms and knees, hands shaking, heart racing, head going fuzzy as soon as my bgs reaches 3.6-3.9.

For months I had not been getting these hypo symptoms. I would only get mild fuzzy feeling and find my bgs be at 2.5 or something like that.

Just now I was lying on my bed and got all the old symptoms of a hypo. I assumed I was extremely low for the symptoms to be this intense this fast. My reading was 3.9, It appears the hypo awareness has returned

 

[ChrissiStar]

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.

Sorry to bounce an old thread back up, but this has just given me such hope! This is also likely to turn into war & peace, so you have been warned, I just feel I need to get it off my chest and I know a number of you will understand and know what I am actually on about.

I have spent a large number of years winging it, never skipped an injection, always injected when eating but I spent a long time (too long) not testing my blood so not having a clue what was going on, everything was guess work, however I felt ok, pretty certain I didn’t have ketones at any point as I never had that awful acetone taste in my mouth, so carried on. This year everything has gone Pete Tong and it has been a right wake up call. My eye going wonky was the first kick up the backside, luckily that turned out to be caused by stress, not diabetes and I don’t have retinopathy, which in itself is a small miracle - however it was enough for me to take notice in July, realise how flipping stupid I have been and actually start looking after myself. My GP arranged for me to see the diabetic nurse at the surgery for my HBA1C (69 - I almost DIED when I got the result, that was the second kick up the backside!) I started obsessively testing my blood, split my Levemir dose and discovered I actually needed a lot more than I was on, totally cut back on junk food and gave up alcohol and started really reading labels on packets, not just carbs, but looking for hidden sugars in the ingredients too.

Now when I say ‘obsessively testing my blood’ I mean I was going for it, I think my best was 21+ tests in one day! Needless to say my fingers were not thanking me for it, but I wanted to understand what different foods were doing to me and wanted to fight the massive spikes, in the end I decided to self-fund a Libre, which was eye opening indeed, however I was due to change sensors on Wednesday and given how erratic things are right now I decided not to put my body through a foreign object being inserted, so I am currently Larry Libre-less and back to finger testing for now.

I still don’t have a massive clue what I am doing and definitely need help, but I have an appointment with the diabetic clinic on the 17th (if I don’t have a breakdown before then) and I am going armed with a huge list of questions.

I’ve become completely overwhelmed by it all, which isn’t helping and to add to it the past couple of weeks I have been fighting an infection that no one can locate so can’t be prescribed anything for, so am feeling totally fed up! I’ve been at the hospital for bloods and monitoring and was released the same evening as my bloods came back as close to normal and at that point I felt fine, only to be floored again 24 hours later and had to have the GP come to the house this morning to check me and try to reassure me again. He’s not too worried as my bloods are far from out of control (11.2 was the highest this morning and since 10.30am I have been in range, haven’t eaten much, but I can’t really stomach food), but he has no idea what I am fighting, I just need to rest and let it run it’s course, if I start feeling worse get back in touch etc. I just want to feel well again so I can get back to normal life, I’m missing my work, it looks like I’m going to have to miss Still Game Live on Sunday unless I have a miracle recovery and I’d quite like my appetite back and my cold feet to go.

Grumble and pity party over, if you made it through that post you deserve a medal.