Newly T1D

C

CWebby

New Member
Relationship to Diabetes
Type 1
Hi everyone,

I’m Chris and have recently been diagnosed with T1D.

A couple of years ago my A1c showed I was pre diabetic and the only help I got from the GP was a referral to a diabetes awareness course and told to watch what I eat. This was a bit confusing as I wasn’t overweight and already had a good balanced diet.

Skip ahead to this summer and boom…lots of the classic symptoms, thirst, peeing, blurred vision, cramps and a diagnosis of T1D at the tender age of 45

I guess I’m here to connect with people that are going though the early stages of diagnosis and to also listen to the experience of others further along their journey.

Stay strong!
Chris
 
Hi Chris and welcome.

Sorry to hear of your diagnosis but pleased you have found the forum as it has been the single most useful resource I have had since my Type 1 diagnosis at 55 (5.5 years ago) In fact I would say that this forum is second to none for support, knowledge and practical experience. I hope you find it equally beneficial.

How are you managing? The first few months can be really overwhelming as it is a very steep learning curve and it can be pretty isolating at times. Other people really can't appreciate how much it impacts all aspects of your life and how much "bandwidth" of your brain it takes up. I hope you have had good support from your medical professionals.

Would you like to give us a bit more info about how you manage your diabetes?

Things like...
Which insulins are you using? I am assuming you have not been put straight onto a pump as that would be extremely unlikely.
Which Constant Glucose Monitor (sensor system) do you have? Most likely Libre or Dexcom?
I assume/hope you also have a BG meter and test strips to double check your sensor readings on occasion and hopefully have some idea of when you might need to do that.
Are you carb counting yet or just injecting fixed doses?
Have you been offered a DAFNE (Dose Adjustment For Normal Eating) course or whatever you local equivalent is. This is an intensive education course usually over 4-5 days sometimes all in a week or perhaps spread over several weeks?

Is there anything particular which you find very challenging or want some guidance or answers about. I found in the early days, some (probably the majority) of what the nurse said went in one ear and out the other or simply didn't quite compute with my limited knowledge of diabetes, so the forum was a great place to come and ask questions and fill in the blanks. There is a huge variation in how diabetes affects us and it can be surprisingly individual in how our bodies respond to different insulins and different foods and different lifestyles and exercise and alcohol and illness and Health care Professionals simply can't predict how our bodies will respond, so to be successful with diabetes management, you have to engage in a bit of experimentation with yourself as the guinea pig. Trial and error and improvement has been how I have improved my confidence and that confidence has been liberating.

Anyway, ask away with any questions you have. You may find a whole variety of answers to any one question and that is because we are all different, but from that range of answers you will have an idea of things you can try to see what works for you. We are here to support you in any way we can as we all know just how challenging the early months and years can be.
 
Welcome to the forum @CWebby

Sorry to hear you’ve had to join our club.

You aren’t alone in being diagnosed with T1 in later life. 50% of cases are diagnosed in adulthood, and we have members who developed T1 anywhere from their 20s to 60+!

How have you been finding things so far?
 
Welcome @CWebby 🙂 Ask anything you want here. Nothing is too trivial or ‘silly’. A Type 1 diagnosis takes a while to get your head round, and it can be overwhelming early on. Do say what insulins you’re on and whether you have a Libre/CGM yet.
 
It is overwhelming at first, but it does get easier!
 
Hello and welcome Chris! I was diagnosed Type I back in the 60's and envy those being diagnosed now as treatment and support are so much better then back then. As you were pre-diabetic two years ago I do wonder if you are Type 1.5 (LADA). A friend who was of average build (5' 10" and 12 stone) was diagnosed Type II at 60. Metformin did not work at all and he was put onto insulin and has not looked back. He was subsequently diagnosed as Type 1.5. It is similar to Type I but develops much more slowly.

All the best, MikeyBikey
 
Hi @CWebby and welcome to the forum - sorry to hear about your diagnosis, but it's not all doom and gloom - I have recent personal experience.

I was 47 (2 years ago) and although probably experienced the main symptoms and didn't realise it, I lost 2 1/2 stone in the course of about 6 weeks - a routine blood test provided an explanation for this and after a couple of weeks on Metformin (no comment) had my antibody test come back and was disagnosed as T1 - I was given a CGM (Libre 2) and insulin a day after (although I didn't have a clue what to do with either initially!) so then my life changed - I must point out that everyone is different at this stage - I was taking miniscule amounts of insulin on a daily basis - 4 units of Lantus in the morning, and 1 or 2 units of Novorapid before eating (regardless of what it was) - I had no idea what I was doing!

As i learned more about the condition, I realised that it is all about management - What is causing my blood sugars to spike? What can I do to counteract this? Do I need more or less insulin? Am I taking it at the right time? And education is the key - the more you learn (from books/online/this forum is the best I've found), the better you can manage your condition, which has been forced upon you.

You will probably still be going through the so called "Honeymoon Period" which it certainly isn't (a dreadful phrase IMO) as it can be very difficult - your pancreas will probably still be making some insulin, and every now and again, it goes bananas, causing crashing lows, when you thought you had your dosage just right - very frustrating.

I'd be interested to know what insulin(s) you've been precribed, have been given a CGM, and if you are doing any carb counting etc. to help with dosages etc. (I doubt you have done a DAFNE Course yet (it took me 18m for me to get on one) and how much you are currently taking - Personally I have more than doubled my total daily dosage over the last six months, as my honeymoon period has come to an end, but was fortunate enough to have had the educational tools to do this as it happened.

I hope you are nott too overwhelmed by it all, Chris, it is a lot to take in, but please feel free to ask ANY questions you may have, regardless of how trivial they may seem, you will not be judged here, and I can personally relate to what you are going through at the moment so am really keen to help as are many many people on here - I'm glad you've found us - don't be a stranger
 
CWebby said:
Hi everyone,

I’m Chris and have recently been diagnosed with T1D.

A couple of years ago my A1c showed I was pre diabetic and the only help I got from the GP was a referral to a diabetes awareness course and told to watch what I eat. This was a bit confusing as I wasn’t overweight and already had a good balanced diet.

Skip ahead to this summer and boom…lots of the classic symptoms, thirst, peeing, blurred vision, cramps and a diagnosis of T1D at the tender age of 45

I guess I’m here to connect with people that are going though the early stages of diagnosis and to also listen to the experience of others further along their journey.

Stay strong!
Chris
Click to expand...
Hi Chris
I am sorry to hear of your diagnosis, and it can be such a shock. I was diagnosed with T1D 2 years ago when I was 67, my A1c having gone from 40 in May to 104 in September.

Three weeks on max dose of Gliclazide [when my A1c went up to 111] before going on to insulin. Meanwhile I had numerous investigations to exclude pancreatic cancer, and my symptoms continued to escalate.

My chief memory of seeing the diabetic nurse was her assuring me I would be able to do everything I had been doing before [voluntary work, looking after grandchildren, gardening, walking etc].

She was right, I gradually regained the confidence to resume everything I wanted to continue.
BUT- there is no learning 'curve', you go home having been shown how to inject etc, and releasing it is for life.
It felt a bit like climbing a high wall!!

I'm a bit stubborn, and was determined to 'get it right' which is to my advantage in some ways, but probably meant I didn't ask for as much help as I should have done. It took me several weeks to feel brave enough to join the forum.

So my advice is be gentle with yourself, don't set your expectations to high; and ask for or accept all the help you are offered.
In this area they no longer offer the DAFNE course, but the online learning resources here and on the NHS My type 1 website are brilliant..
 
MikeyBikey said:
As you were pre-diabetic two years ago I do wonder if you are Type 1.5 (LADA). A friend who was of average build (5' 10" and 12 stone) was diagnosed Type II at 60. Metformin did not work at all and he was put onto insulin and has not looked back. He was subsequently diagnosed as Type 1.5. It is similar to Type I but develops much more slowly.
Click to expand...
Type 1 develops slowly when you are older. That doesn't mean it is not Type 1.
And Type 1.5 is a term that many avoid because at best it is not understood and at worse it is ambiguous.
There is no point in using it when the treatment is the treatment for Type 1.
 
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