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Complications age 25

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ktkrshw

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Hi,
I was diagnosed at age 13 and have recently turned 25. Last week, i was laid in bed and my right leg suddenly went really hot then numb. I looked online to find it could be a complication of diabetes. Since then it has happened multiple times and I have tingling in my right arm occasionally also. I feel like this is happening very rapidly as I have never noticed it before.

My diabetes has been very poorly managed since I was about 16. I would go to the hospital and lie about my readings. For the last few years I have regularly let me blood range from 8 up to 20, atleast a couple times a week. It is usually high every morning (around 15 most of the time!). It's more rare for my bloods to be below 10 than not. I don't watch what I eat and drink excessively when I go out with friends. I know I haven't looked after myself at all and have chosen to ignore it for years. It's only recently when I've looked up complications that I've realised how stupid I've been. I am overweight and have recently been prescribed orlistat. My memory is terrible, sometimes I can't even remember what I did the day before without really having to think about it. My heart beats rapidly sometimes for no reason. My last eye test came back with damage. I have been really upset the last few days as the numbness in my leg feels really scary and I feel like it's too late to do anything about what I have done other than look after my blood and hope for the best. I am terrified on the future.

Has anyone else had similar experiences of letting their blood be out of control for so long in their teens? I has been years since I managed it properly. I would like to hear how people are managing now whether good or bad please

(Sorry for this been very long!)
 
Hi
You need to keep it between 4-7
 
fireworks said:
Hi
How much damage do you have in your eye
You need to lower your blood sugar level cut out the junk food
Eat healthy food and exercise
This should help you
Also see a diabetic specialist nurse or consultant
Click to expand...
Hi
Sorry sent message to you
I should have sent it to KtKrshw
 
Hi @ktkrshw, Sorry to hear of your troubles.
As a diabetic with 52 years experience but not as professional advice or opinion:
Regarding your leg and arm symptoms, seeing your doctor as soon as possible is best, in order to find out what is happening and whether is is related to your diabetes or not.
There are stories of some degree of reversal of diabetic complications with good control of BSLs but that has to be tempered with stories of problems where the change to good control has been too rapid.
I assume you have been prescribed blood pressure medication to try to delay onset and progression of of any kidney problems.
Please keep posting and let us know how you fare. Best wishes.
 
If it's any consolation I spent my teens with mediocre (at best) control, this was pre glucometer so I have no idea how bad it was but when I was given my first glucometer I think my hba1c was about 13.... I improved my blood sugars aged 20 (or so) with the advent of glucometers and I'm still walking around today with all my limbs, working kidneys and eyes etc (got some cataracts forming but I think that's more age than diabetes).

So, it's never too late to improve your blood sugar control, there are many complications which can be stalled or even reversed by tightening up your control. No point agonising over past mistakes, concentrate over improving your control in the future. I always found my control improved when I tested more often. Maybe you'd qualify for a freestyle libre?

Good luck.
 
Hello @ktkrshw

Welcome to the forum

I am only around 7 years diagnosed now with this, so haven't lived through teens, which in my book must be the hardest phase for any t1 to deal with. You can turn this about though and at least admitting it here shows that your acknowledging an issue and need support. You need to get back in touch with your team and get assessed physically also to get support with your diabetes care. Be honest with them and admit you need help. Also use this forum for support, there are many t1's of all ages here who can share tips and support you so you don't have to feel alone, you can get back on track and many here are testament to living healthy lives in control of this.
 
Hi @ktkrshw - few of us have perfect control (ha few!) it's hard, frustrating work. But if you can talk to your doc/nurse and ask for support it is likely you will see an improvement.
 
Hey ktkrshw
So one thing you can do immediately - test blood sugar more (don't tell my doctor I told you this as he is an ar******)
About 8 yrs ago I had not had hbA1c done for 5 yrs at least. I was 35.
I had lived through my teens and 20s having done nearly no blood tests.
When I had the hbA1c done I made a decision that I would make a change if it was bad.
Obviously is was bad - 11 (96 on new scale).
The work began. The first thing I knew I could change immediately was how many tests I did. I tested 5 - 10 per day. I did more tests in 2 days than I had done in 2 years.
I started exercising more. Smoking less cannabis helped with not eating 2 packets of biscuits in one go!
I could give you a long list of things I did, and changes I made ---- but this is your journey. I have great control now. But to get here it took a lot of learning. On reflection it was not easy - but also it just kinda of happened without me striving for it to happen.
The usual advice --
Eat healthy
Don't smoke
Drink less booze
Exercise more

These are all things that you may or may not do........

Test blood sugar more

This is one that I implore you to do. It is so easy -- ping... 5 secs ...done.
Once done you know where you are - then you can correct accordingly. You will start to learn what affects your readings and how. Once you start learning you will then be in a much better place to make a change.

Good luck mate.
 

Whilst I'm only a T2er, I did a similar thing to you.
I thought I'd cracked it a few years back and no longer needed meds.
BUT, I hadn't... as I slipped back into the old habits.
About 2 months back I had the very same symptoms as you and then some.
I rang the Drs etc etc.
After (delayed) blood tests etc we found that my BP was horrific and my HBA1c wasn't that great either.
After giving myself and almighty b.llking, taking a few meds and getting a grip, I've dropped my daily average numbers ( by using 8 fixed data points on the Libre) by 61% , in 20 days.
As much as I will miss the packets of KitKats, cider and naan breads et al...I would miss being able to walk for hours on end, my kids and better half and even driving far more.
Guess what??
Except for the very occasional bout of fizzing feet and nerve pain ( I had once one in a delicate area that dropped me to the floor) , the symptoms have gone.
I wish you the very best and hope that you're encouraged by all the positive stories on here.
 
Hello @ktkrshw welcome to the forum, the answer to your question is yes you can turn this around BUT it is up to you.

I would get an appointment with your Doctor/Hospital and then a Diabetic team to help you out and then stop lying about your bloods, test more and begin to watch what you eat. Its not rocket science.

I got through the 70 and 80 pre all this blood testing and HB1aC testing nonsense, eating. drinking, smoking weeds, parties etc etc the days when it used to be one injection a day and urine testing which could be six hours out and I'm still intact.

There are a few walking wounded on here that did not look after themselves in their earlier years but have turned there life around guess they will find this thread in a bit and add to the general discussion.

It is never to late to turn things around.
 
Hi @ktkrshw - sorry to hear about your struggles.

Three things for you:
  1. As you'll almost certainly have an Hba1C of more than 8.5% that qualifies you for the Libre on prescription under the national guidelines, and the NHS have now stated that those are what apply for access to Libre. You should be able to get it next year. That makes managing diabetes a whole lot easier.
  2. While teenage years can be tough (I was diagnosed at 13 and spent my early twenties being a little careless), you can make small changes to help yourself. It's worth having a read about Laura (Ninjabetic) who was diagnosed at 16 and struggled for 10 years: http://ninjabetic1.blogspot.com/p/home.html
  3. Join the diabetes online community. You've made the first steps in the forum here. There are also a load of supportive facebook groups, and it can be found on Twitter with the hashtag #GBDOC. There's also loads on instagram. Wherever you look there are people talking about Diabetes and discussing how they live with it. The peer to peer support is amazing and understanding, and I encourage you to join in.
 
Welcome to the forum @ktkrshw
Sounds as if you are going through a tough time at the moment.
However, it looks to me as if you are starting to turn the corner: you have recognised what you have been doing and want to change it.
It is not easy but there are many people who have achieved it.

As others have suggested, I would make an appointment with your diabetes team and ask for their help. That is what they are there for. They are not there to judge you for what you have (or haven't) done in the past. They are there to help. So use them.

Different things help for different people but you can think about setting yourself some targets. Don't get overboard and beat yourself up if your BG is not between 4 and 7.
Or ask your diabetes team if they have something like a DAFNE course. I had had diabetes for over 10 years when I attended my first course and found it great to spend some time with other people with type 1 .. and I learnt a few things too.
Whatever you do, don't beat yourself up and don't hide away. You cannot change what has already happened but you can turn it around and there are people who can help.
 

Hi there ktkrshw, I am assuming you are type 1 and on insulin and I'm guessing that is erratic too. I would say that it is NEVER too late to make improvements, especially aged 25. I have only recently been diagnosed but my Mum was a type 1 for over 50 years and in the first 30 years (back in the 70s) she was described as brittle. That meant her sugars were always high, in the 20s mostly. This went on for 30 years before they managed to lower it to the teens (still not good) and then down into single figures. She had blood tests throughout and you could see the difference in her health by comparing her results when high for years and then when lower for years. Everything improved, eyesight, liver, kidneys, leg sores etc. It is very hard for you but I do NOT feel it is too late for you, try and find a regime, check your levels, take your insulin, go for all the tests, take some exercise, lose weight etc, and in 3 short months you may be amazed. x
 
Hi @ktkrshw I know exactly where you are coming from. When I started at university, aged 20, I had already been a Type 1 for 19 years. When I was 8, I was in a coma for 5 days: when I was 13, I was unable to read the name of the railway station on the opposite platform, yet my visual acuity was excellent normally; when I was 15, I showed signs of kidney disease. At university amongst other subjects I studied booze and free living until I was read the riot act at King's College Hospital. Like you I was depressed, mainly because I realised I had neglected what diabetic advice was available then (primitive, but preferable to my choice) and because I thought life would end in an abrupt and ghastly way. But I came to my senses and started regular use of the new blood sugar meters (massive) lent by the hospital. A few months later my father remarked "I think this is the first time you have realised what it's like to feel well." He was dead right,
One of the problems is that in your depressed state, information becomes overwhelming, but I especially agree with those who have said use a meter. You will soon see what causes you to feel unwell, which can include: lethargy, nausea, excessive peeing and thirst, runny nose, diarrhoea, blurred vision, violent mood swings, headaches and not wanting to be with people. The blood meter revolutionised my life and dramatically slowed down kidney disease (they lasted until 2013), and retinopathy (the last laser treatment was in 1983) which enabled me to have a kidney/pancreas transplant in 2013. I have had a great life thanks to that clinic visit back in 1979. I sm now 60 and am able to drive, read, write, travel and celebrate 36 years of marriage, in fact today! I hope this, and the other posts, will shine a bright light at the end of what seems a monstrous tunnel. The very best of luck!
 
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Congratulations on your 36 years of marriage Grant!
 
I was diagnosed at 19 and spent most of my 20s with rubbish control. As others have said, you can turn it around, but it all comes down to self control. I'd love to eat what I want, drink what I want and do no exercise (I did for many years), but you can't have a lifestyle built around that if you want to have a long and healthy life as a T1.

Stay on this forum and heed the advice of people on here - it turned my control around. Today is the first day of the rest of your life, and all that. So start today.
 
Hi @ktkrshw yes you can turn this around BUT it is only you who can do this. I am a long termer (47 years) and never really looked after my diabetes. I lost the sight in my left eye a long time ago. That should have been the kick up the backside I needed to gain control BUT no. It was around 3 years ago when I was diagnosed with stage 4CKD that I turned the corner and really gained control as the thought of dialysis scares the beejeebies out of me. Take a look at my signature for my HBA1c's and you will see the turn around. I went thru diabetic burnout a lot and was out of control more than I was in control.
I still eat what I want BUT I count carbs and bolus for what I eat now. AND I feel a lot better, still stage 4CKD (that will never go away) with my kidneys only working at 21% BUT they have been staying at that level now for the past 30 months because of good control.
You can do this....you are still young and the damage can be halted now BUT it is only you who can make the decision to sort it out. Get as much help for your diabetes team as you can.
Any more help you want just PM me. I am here most of the time
 
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Hi @ktkrshw , welcome to the forum. This forum has plenty of amazing people who will offer great advice and support. Come on each day and get support and help, we are all very friendly.

First things first you are aware there is an issue and that is the most important step. get yourself off to doctor to see about numbness in legs etc. This may be completely unconnected with your diabetes

Most important thing to do is check your bloods regularly, particularly before each meal. If you know what your BG is you can then count how much insulin you need for the food you are about to eat.

It is important to carb count and to know what your carb to insulin ratio is. Hopefully you know what i am talking about, if not please say so and we can help you with this

If your BG is as bad as you say you may be entitled to freestyle Libre on prescription. Speak with your doctor about this and try to get one. It is a great wee device that you attach to your arm and this measures constantly your interstatial fluids, similar to blood glucose levels, but runs about 10/15 mins behind. You then simply use the scanner you get to scan and see how your levels are

There are many on here who have been diabetic for 40 years plus and i am sure most of us did not have best control. i have been diabetic for 37 plus years and its only in last couple of years I have really put the effort in.

I wont kid you on it can be a bit of a faff at times and it does take a wee bit of effort, carb counting, adjusting insulin doses to suit, blood tests, but it is worth it. You mention that you are a bit overweight, however with a better diet and better control, you will reap the benefits. i changed my diet around watching the carbs i was eating and lost almost a stone with 3 months. Also taking less insulin now as well. My Cholesterol has improved, blood pressure is down, and damage to my eyes has improved.

It is also worthwhile taking with the experts. get yourself an appointment with the diabetic specialist nurse at your local hospital who in turn may refer you to dietician and podiatrist to look after your feet.

We are all here for you, you will never be alone and someone will always be willing to help out. most of us have been there
 
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