Good morning all.... Surprise T1 here!

[PeteM2020]

Well, I wasn't expecting this at 53 years old.

I'd been feeling rough since, I think, around September or October 2019. Then suddenly at the beginning of February 2020 I had quite frequent blurry vision, constant thirst, needed to go to the loo really frequently and with great urgency, and weight started to fall off me. I was literally fading away and bones started poking out. I lost 11kg, falling from 81kg to 70kg over the course of just 4 weeks. I couldn't get to sleep at night and could barely lift stuff at work.

Towards the end of Feb, just after my birthday, I bought some urine test strips and was surprised, but not surprised if you know what I mean, to find I urine glucose and ketone levels were off the scale. This was on a Saturday.

On the Monday morning (2nd March) I made an appointment to see my GP, and they fitted me in before lunch. She went a wee bit mad at me, pointing out that I'm an intelligent bloke with a scientific background who knew for some time something was seriously wrong, and so why the hell didn't I go straight up to A&E. I was on the verge of something bad happening.

Anyway, she did some blood tests and called the AECU at Sussex who told me to go straight there. After tests and then being put on a drip for the afternoon, it's been confirmed I have Type 1 diabetes.

I think I'm coping ok and an managing to fit tests and injections into my work day which starts often really early morning, often ends really late, and I'm generally in the middle of a field or construction site, with meal times all over the place.

I'm still struggling a bit to come to terms with the fact that this is my new daily routine for ever, and that it's not just a minor blip in my life. And it's also a big surprise for my wife and kids. I'm also concerned that this has likely been caused by my stupid immune system that has already caused me to have alopecia universalis (started 40 years ago) and 20 nail dystrophy. I mean, what part of me is my immune system going to destroy next?

 

[stephknits]

Welcome Pete - it's a big shock isn't it and I agree takes some getting your head around. There are quite a few of us 'late starters' on here - I was a spring chicken at 42. Glad you found us.

 

[PeteM2020]

Thanks Steph. It just feels so weird at the moment, almost surreal. I'm so grateful I got in just before all the convid19 problem kicked off.

Is everything good with you?

 

[Ally beetle]

Hi just do your best at the moment. You will get used to this all in the coming months and years until it starts to become second nature.

Just try to find out what works for you in a safe environment with someone around. Exercise is a big one as your insulin works much better so you can become hypoglycaemic fairly easily.

The best advice I can give is don’t try to bring your blood glucose level down too quickly when you are so freshly diagnosed. because you have glucose in places that shouldn’t have glucose in like your eyes. it can have unwanted side effects as I found out when I was first diagnosed 10 years ago at about 30yo.

 

[PeteM2020]

Obviously I meant covid, not convid. I suddenly can't read close up!

 

[Northerner]

Hi Pete, welcome to the forum 🙂 Sorry to hear about your diagnosis I was also very surprised at mine, I was 49 and due to run a marathon that week! 😱 What insulin are you on and how are you managing with the injections etc.?

I would highly recommend getting hold of a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - it's the most comprehensive book available on T1. Don't be misled by the title - this book is relevant to people of all ages 🙂 Make sure you get the latest edition as things are changing all the time, with new knowledge, treatments and technologies 🙂

Please let us know if you have ANY questions - there is a wealth of knowledge and experience here, and no question is considered 'silly' 🙂

 

[Northerner]

Obviously I meant covid, not convid. I suddenly can't read close up!

That will improve, happens to most of us when newly diagnosed 🙂 Might take a couple of weeks as you start to get your blood sugars under control 🙂

 

[SB2015]

Snap Pete.I too was diagnosed with T1 at the age of 53.
As you say it is a big shock, however once the insulin started going in I did immediately feel better.

There is a lot to learn at the start, but it will then become of your new ‘normal’ life. A book that I found useful was T1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas. Ignore the age reference. T1 is T1, and the book is an excellent reliable reference with clear explanations.

When you are in Multiple Daily Injections it doesn’t matter when you eat, as you can inject the quick acting insulin (Bolus) when you eat, and your background insulin (Basal) will deal with the glucose that your liver drips out to keep you ticking over. What insulins are you using at present?

You will no doubt have loads of questions. Just ask.

 

[SB2015]

I need to type more quickly, or not try to eat breakfast at the same time.
Lots of overlap with @Northerner , same message.

 

[SB2015]

Obviously I meant covid, not convid. I suddenly can't read close up!

Your eyes will settle as your levels come down, but that hasn’t reduced my typos as yet!!

 

[PeteM2020]

Thank you Ally for the advice. Eyesight has turned out to be a big issue. I wear contact lenses to correct short sightedness, and over months, or maybe even years, my distant vision had been getting worse. Since my diagnosis and injecting insulin by distant vision has improved but now I can't read close up unless I remove my contact lenses or wear my wife's reading glasses! The nurse advised me to hold out for a few months before getting a new prescription for lenses as things will take a while to settle.

Regarding hypoglycemia, I felt myself heading that way yesterday morning while lifting and moving a lot of drilling equipment. I tested blood and my glucose had fallen to 4.8mmol. It's a feeling I've had a lot in the past so knew what was going on, and a handful of jelly babies made my feel ok again!

Hi just do your best at the moment. You will get used to this all in the coming months and years until it starts to become second nature.

Just try to find out what works for you in a safe environment with someone around. Exercise is a big one as your insulin works much better so you can become hypoglycaemic fairly easily.

The best advice I can give is don’t try to bring your blood glucose level down too quickly when you are so freshly diagnosed. because you have glucose in places that shouldn’t have glucose in like your eyes. it can have unwanted side effects as I f

 

[PeteM2020]

Thank you for the book recommendation; I'll certainly get a copy.

I'm on Levemir and Novorapid. Injecting has been fine. I used to be scared of needles but back in 2011 I got hit by pulmonary embolisms and bibasal pneumonia. In hospital I had so many injections and blood tests and my needle phobia got immediately cured. The diabetes specialists at the hospital were surprised at how well I copied!

I'm sure I will have questions, and I hope you be able to help others here as time moves on.

Thank you!

Hi Pete, welcome to the forum 🙂 Sorry to hear about your diagnosis I was also very surprised at mine, I was 49 and due to run a marathon that week! 😱 What insulin are you on and how are you managing with the injections etc.?

I would highly recommend getting hold of a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - it's the most comprehensive book available on T1. Don't be misled by the title - this book is relevant to people of all ages 🙂 Make sure you get the latest edition as things are changing all the time, with new knowledge, treatments and technologies 🙂

Please let us know if you have ANY questions - there is a wealth of knowledge and experience here, and no question is considered 'silly' 🙂

 

[Ally beetle]

Also you maybe in the honeymoon period. Strange term but what it means is that your body might be still producing small amounts of insulin which when it is put together with the injections you give yourself can cause hypos or near hypos.

I am so sorry you are having to go through this! It is horrible and very confusing because diabetes is so complicated to treat especially at the start because so many situations come into play.

my advice is to not get too worried about getting it exactly right slightly high is ok trying to get blood glucose levels below 10mmols and running in single figures most of the time is good but don’t aim for lower than 6 to keep you safe from hypoglycaemia.

you will get their just read the basics of T1 diabetes and try not to read too much too soon as you will get overwhelme. Just stay safe and as much as you can, have someone you trust with you who knows you have type one diabetes. Especially when you are doing Strenuous activities/ exercise.

kind regards

Ally

 

[PeteM2020]

I think when we get to 53 this sort of thing is so unexpected! Did you also have a load of weight loss on the run up to it? I really felt it was the end for me, and the night before finally going to the GP I actually felt that I might not wake up. From that perspective I suppose the diagnosis was a relief.

This is a big learning experience. I'd always associated diabetes as being something that only only affected greedy unhealthy people, and really didn't appreciate how it can affect anyone. I feel awful now for thinking in the past that some people got what they deserved.

Like you, I started to feel so much better as soon as treatment started.

The NHS staff have been amazing on all ways, and the nurses I've spoken to on the phone since have been so supportive and understanding. It seriously makes my eyes leak 🙂

Snap Pete.I too was diagnosed with T1 at the age of 53.
As you say it is a big shock, however once the insulin started going in I did immediately feel better.

There is a lot to learn at the start, but it will then become of your new ‘normal’ life. A book that I found useful was T1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas. Ignore the age reference. T1 is T1, and the book is an excellent reliable reference with clear explanations.

When you are in Multiple Daily Injections it doesn’t matter when you eat, as you can inject the quick acting insulin (Bolus) when you eat, and your background insulin (Basal) will deal with the glucose that your liver drips out to keep you ticking over. What insulins are you using at present?

You will no doubt have loads of questions. Just ask.

 

[Ally beetle]

Hi Pete I developed type one diabetes at age 31 it was out of the blue for me. But should have seen the classic warning signs but it did not click but when a relation of mine who was a GP did a urine test on me it was off the scale. I went to my own GP and he sent me straight to hospital and i spent a few days there to get stabilised and given a long acting insulin and a short acting insulin and had to just get on with it .

After a few months of appointments i was given an opertunity to go on a diabetes training course and over the weeks i gained the knowledge i needed to understand the condition. I have continued to learn since that time and it has to an extent become easier to live with diabetes in my life.

 

[SB2015]

I think when we get to 53 this sort of thing is so unexpected! Did you also have a load of weight loss on the run up to it? I really felt it was the end for me, and the night before finally going to the GP I actually felt that I might not wake up. From that perspective I suppose the diagnosis was a relief.

This is a big learning experience. I'd always associated diabetes as being something that only only affected greedy unhealthy people, and really didn't appreciate how it can affect anyone. I feel awful now for thinking in the past that some people got what they deserved.

Like you, I started to feel so much better as soon as treatment started.

The NHS staff have been amazing on all ways, and the nurses I've spoken to on the phone since have been so supportive and understanding. It seriously makes my eyes leak 🙂

Hi Pete

I lost 1 1/2 stine in one week!! All the other usual symptoms but as I knew nothing about Diabetes I did not work out what had happened. It was picked up and GP correctly diagnosed T1. Off to hospital, drips, testing stuff and insulin pens and home. I also thought it was only a childhood disease.

12 years on it really is part of a new normal life. It takes time for things to settle and your nurses will work through things with you to find your appropriate doses. Be patient (not easy).

Wherever you are have hypo treatment with you. They are a pesky consequence of using insulin.
Mine is jelly babies. Easy to carry with you and they don’t leak.

 

[SB2015]

Just spotted yet another typo in my message!

 

[Northerner]

I think when we get to 53 this sort of thing is so unexpected! Did you also have a load of weight loss on the run up to it? I really felt it was the end for me, and the night before finally going to the GP I actually felt that I might not wake up. From that perspective I suppose the diagnosis was a relief.

Yup! Same for me - I lost 17 pounds in 3 days, although I had been steadily losing weight over a period of about 18 months (onset is often slower the older you are). I'd had symptoms during that time, but put them down to other things -age, training for marathons so tired, hot, so thirsty etc.

I actually caught a stomach virus immediately prior to my diagnosis which pushed my pancreas over the edge and I ended up with DKA (Diabetic Ketoacidosis) and was in hospital for 8 days. I felt amazing after they gave me insulin and was sure I would still be able to run my marathon a few days later 😱 Sadly, not to be. But I have been doing well in the 12 years since. The good thing about diabetes is that, whilst it is serious, it can be very manageable if you just take a bit of care and use a bit of planning. The latest great advance is the wide availability of the Freestyle Libre system, where you can just scan a sensor on your arm and it tells you your levels - no fingerpricks! 🙂 Worth asking about, as it is a real help in understanding your body's responses to your various food choices and activity levels 🙂

 

[trophywench]

The Libre is brilliant when you have a very active job/life or a mucky job (assuming here that no-one gets covered in manure or whatever for leisure LOL) in view of not having to make holes!

 

[rebrascora]

Hi and welcome from me too.

I was diagnosed a year ago at the age of 55, so there are plenty of us late starters here.
Having a scientific mind I figured it was diabetes so cut down on my sugar intake for 2 weeks naively thinking that might sort it, before eventually going to the docs. They assumed I was Type 2 so I had 6 weeks of learning how to eat very low carb and oral meds before eventually getting started on insulin and I continue to eat very low carb and use minimal bolus insulin which helps me to control my levels, but a year down the line and I am still trying to find the best balance and hoping for a Freestyle Libre soon. Sadly this virus has sadly put that on hold but far worse things happening in the world.

I lost nearly 2 stones during that 6 week period but I was on a progressively strict diet to try to get my levels down, so didn't think too much of it. It was fascinating watching the numbers drop on the scales every day though!

This forum has been a life changer for me in learning how to manage my condition.
I hope you find it equally beneficial.