Type 1 at 34 Years Old.....and Very Confused!

[Tom_T]

Hello – I was diagnosed with Type 1 diabetes just over 5 weeks ago (at 34 years old) – which was a shock to say the least (no family history)
Since that point, the more I’ve read, the more I’ve been getting confused as to what I should be doing for the best…..

First thing would be….am I definitely a type 1??? I’d lost quite a lot of weight (now going back on) which was one of the many symptoms, and my hba1c was 12% (with a fasting result of 12mmol/l)
But, I had a GAD antibody test done pretty much as soon as diagnosed – which was ‘8’ (with the doctor saying that was upper range of ‘normal’ and even seemed to be toying with idea of taking me off insulin!)
I’m pretty hung up on that point – as if there’s even a chance that some radical diet and exercise changes could some how ‘fix’ me – I’d do that wholeheartedly (as for everyone who is on MDI presumably).


Assuming the above is lingering ‘denial’ – the main area of confusion is what I should be doing with diet. Specifically carbs, and I’m probably a ‘carb monster’ by diabetic standards.
I’m on (what I think is) low amount of insulin – set levels without instruction to adjust depending on intake - apidra (2/3/4 – breakfast/lunch/dinner) and lantus (5 taken in the evening). Bertie course to follow at a TBC date
Last appointment I had (2 weeks ago) the doctor ummed and arred and said to go up another unit for all – but to be honest, I haven’t worked up the courage to do this as my blood sugar swings all over the place – and I don’t want to go any higher ‘blindly’ without carb counting etc.

How do I go about checking my basal is correct and then adjusting my bolus to what I’m eating? (and what amount of carbs should I be targeting?)

Nb/ I’ve now got myself a libre and just under a week in – great for minimising finger pricks – but don’t know how to be using all the data its gathering.
(My average is 11.9mmol/l according to libre)

Bit of a ramble – any advice or pointers would be greatly appreciated…..!

 

[Northerner]

Hi Tom, welcome to the forum 🙂 It's possible to be diagnosed Type 1 at any age - I was 49, and similarly shocked, but since then I have encountered many, many people with a similar story of being diagnosed later in life. The assumption often made, particularly by some in general practice who would be much more likely to encounter Type 2s, is that Type 1 appears in childhood and that being an adult precludes it as a possibility, so people often get misdiagnosed as Type 2. Fortunately, in your case, it sounds like they were on the ball, and though the GAD test may be inconclusive I believe this is often the case, so it is not 100% reliable - more important are your symptoms, speed of onset, losing weight rapidly etc. In adults, onset is often slower than in young children, so this can lead to some confusion - many adults continue to produce insulin, but in declining amounts. It sounds like you are in this position, needing to inject relatively small amounts (but by no means the smallest doses I have encountered). This may stabilise at these levels or may increase - or even decline, it's a very individual thing. As an idea of where you stand, my first HbA1c at diagnosis was 11.8% - my first fingerprick test was 38 mmol/l 😱 Do you have any family history of any other autoimmune conditions?

As it is still very early days it can be difficult to fine tune adjustments to doses, particularly since your body will be recovering from its pre-diagnosis state, so do try and be patient. Good that you have the Libre, that should really help you to spot obvious patterns which you can then discuss with your DSN or consultant (or are you just seeing your GP? If so, I would ask to see a specialist). My recommendation would be to eat regular meals, and keep the meals boring and simple so you can compare day-to-day results more easily - in this game the fewer variable you have to consider, the better! 🙂 It's a good idea to start a food diary, writing down the amount of carbs, in grams, in everything you eat and drink - this will also help you to identify elements of your diet where perhaps your insulin doses are too high or too low for the meal consumed. I'd try to keep to the things you like to eat, but not to go too 'carb heavy' with your meals, as I find personally that having a high amount of carbs in a meal (maybe 70g+) makes control more difficult. As you are using insulin, you don't need to be too concerned about a huge decrease in your carb intake - experience will gradually tell you what you can tolerate well in order to maintain good levels. As a guide, I seem to have settled on an average consumption of between 100-150g carbs per day, although it was much higher when I was first diagnosed.

You will learn about things such as carb counting and basal testing on your course - BERTIE has a very good reputation 🙂 At the moment, things are likely to be too unpredictable to make anything other than obvious changes (I had to redcue my lantus fairly early on because I was waking low in the night). What levels are you going to bed on, and waking to?

Get yourself a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - considered to be the 'bible' for Type 1s, covers all aspects of living with it and can be very useful for prompting questions you can then put to your team. Don't be misled by the title - this book is relevant to people of all ages! 🙂

Please ask any and every question you have, there are lots of very knowledgeable and experienced people here who will be happy to help 🙂 It can be a challenge, but you CAN live well with it and it doesn't need to stop you from doing anything you want to do - people fly planes, drive trains and run ultra-marathons with Type 1, so if you have ambitions to do this, you still can, it will just take a bit more planning and understanding of how your body works and how to be a pancreas 😉

 

[Robin]

Hell Tom, and welcome to the club nobody wanted to join. There are quite a few of us on here who developed type 1 later on in life.
You must be in a flat spin, not knowing where to start grappling with this, I know I was! Have a look at the 'sticky'thread at the top of the Newbies section, there's a lot of stuff there that would,be useful to read. The Ragnar Hanas book is useful for new diabetics of any age, and when you're feeling a bit more confident, there are useful tools for teaching yourself carb counting ( or refreshing your memory after doing a course). You will probably find when you get into it that fixed doses of insulin don't cater for a very varied life!
The GAD antibody test is notoriously unreliable as a diagnostic test, it only tends to show positive when your immune system is actively attacking pancreatic cells. The best course of action is, I think, carry on the regime if it's working for you, and change it if it isn't!
I've got a Libre, and find it invaluable. It can show you what's going on between meals, and overnight, in a way finger pricks can't, however many you do. What you are aiming for is a steady graph, in the blue bit most of the time, coming down to 4-6 before meals and first thing in the morning.( though however hard you try, there will be times when you stray outside, matching blood sugars and insulin isn't an exact science).
I won't bamboozle you with too much fine tuning now, have a read, and come back to us and ask away whenever you meet something you don't understand or want to know more about.

 

[HOBIE]

Welcome Tom, Well done for getting the Libre. Lots of info which you can show the specialist. Good luck

 

[trophywench]

How do you test your basal to see what's what?

http://www.diabetes-support.org.uk/info/?page_id=120

(Written by a diabetic for other diabetics, without excessive jargon or anything complicated LOL)

 

[Stitch147]

Hi and welcome to the forum.

 

[bilbie]

I would ask to go on a course, from what I've seen on the forums, they are worth their weight in gold. Reading the internet helps and gives you things to talk with the nurse about.
There is an online course for background and an idea to it. Free to register
http://www.bdec-e-learning.com/

This set of workbooks is worth reading and practising working examples of carbs, doses and correction. Don't change without nurse approval.
An Introduction to Carbohydrate Counting ,

The Next Steps


Basal testing
https://mysugr.com/basal-rate-testing/

Sick day rules
https://c.ymcdn.com/sites/www.ispad.org/resource/resmgr/Docs/CPCG_2014_CHAP_13.pdf

 

[trophywench]

The bdec online course - of course! - is based on BERTIE - as both are offerings invented by Bournemouth Diabetes and Endocrine Centre - BDEC, LOL

The classroom type version however is FAR more in-depth with lots of one to one, and you just can't get that online. Worth it's weight in gold!

 

[Tom_T]

Thanks to every one for the welcome and the advice - its appreciated.
I think i know what i need to start doing to get my 'numbers' better - its plucking up the courage to move away from the status quo (which i'm functioning with) - which i know is far too high currently.

I've been practising counting carbs (and have purchased the app!) - its the ones not to count that i haven't got my head around yet - but i've made a start on the BDEC online course.
(but from one of the other items i've read - sounds like i must get my basal right before i turn my attention to bolus?)

Northerner - to answer your question - i'm going to bed on (and waking up to) around 11-12mmol/l - from the libre over the last week,
Now i've finally looked at that - i was thinking tonight i would finally follow the doctors advice and turn up my lantus from 5 to 6 units (as i think i'm some way off the 6-8mmol/l he told me to aim for).
Nb/ I'm under consultant care (not GP) which i think was another question
(and no i've got no family history of type 1 or other autoimmune illnesses)

 

[Northerner]

Tom, I hope you are double checking the Libre readings with your blood glucose meter. The Libre can be temperamental but the meter has much higher standards for accuracy, so you should be doing the important tests (fasting, before meals and bedtime) with the meter at this stage, whilst you are unsure of your doses - the Libre should be there to provide additional information about patterns through the day and night. 🙂

 

[Tom_T]

I did initially double check all of them for the first few days - but i'd started to dial it back as i was getting good correlation (<0.5mmol/l)
(obviously still religiously using the finger prick before driving).
You've made me think perhaps i'll start stabbing my finger again more frequently though!

 

[Bloden]

Hi Tom T and welcome.🙂 I was diagnosed aged 41 and, as lots of people say, there's a lot to take in at first, but you will get there! It sounds like you're working hard to understand your new situation.🙂 I find the info and support on this forum invaluable so keep firing away with those questions!😛 I love the photo btw...

 

[Tom_T]

Thanks Bloden - The '_T' stands for turtle (long and uninteresting story) - so the pic seemed appropriate given my (now prior) habit of eating a lot of fruit....

 

[Copepod]

Welcome to the forum, Tom_T. No need to reduce yout fruit intake unless you want. Berries are among the lowest sugar fruit, so, least worth limiting. Tropical fruits tend to be higher sugar / higher carbohydrate. But you can match carbohydrate intake with insulin - or exercise to some extent.

 

[SB2015]

Hi Tom

I am another late diagnosed T1 at the age of 53. A big shock and a lot to sort out.
as Northerner has said it is a very muddling at the start as levels go up and down almost at random during the Honeymoon period (a ridiculous name for it!!). So be patient, but find out all you can about how your body reacts to different foods. The Libre is great for this. I use a sensor for a specific purpose, and that enables me to interpret the results in order to adjust my insulin. It is great that you are under consultant care as they can draw on experience of many more patients with T1 than a GP can. So just keep asking them and us any questions. We are all different and it is up to each of use to self manage our condition, but there is a lot of help available to guide us on our way.

 

[KateR]

Hi Tom and welcome.

 

[Tom_T]

Thanks for the further welcomes!
Blood sugar is still all over the place but feeling a bit more positive strangely.
I seem to go really high in the morning and never really recover - I've upped my apidra from 2 to 3 with breakfast, which I know is only a unit but represents a 50% increase for me - but no real difference.
As a type 1 should I be thinking 'no carb' for breakfast and if so, take no insulin?
(I start climbing pretty much as soon as I wake up regardless of whether anything has been eaten - my liver presumably?!)

 

[Northerner]

Thanks for the further welcomes!
Blood sugar is still all over the place but feeling a bit more positive strangely.
I seem to go really high in the morning and never really recover - I've upped my apidra from 2 to 3 with breakfast, which I know is only a unit but represents a 50% increase for me - but no real difference.
As a type 1 should I be thinking 'no carb' for breakfast and if so, take no insulin?
(I start climbing pretty much as soon as I wake up regardless of whether anything has been eaten - my liver presumably?!)

This is common for a lot of people in the mornings. There are two possible reasons for it - firstly, your liver will release extra glucose into your bloodstream at the start of the day to give you and energy 'boost' - unfortunately, your pancreas can't respond as a fully-functioning one would and provide an appropriate amount of insulin to go with it. Secondly, people are often more insulin-resistant in the mornings and become more sensitive as they become more active as the day progresses, so the insulin you inject doesn't go as far. For these reasons, you may need a much higher insulin to carb ratio in the mornings. The alternative, as you suggest, is to limit your breakfast carbs. However, you may still need insulin, even with a no-carb breakfast - this is one of the little things diabetes likes to throw at you just t complicate things further! In time though, experience will teach you what you need and it will be far less of a problem 🙂

 

[Bloden]

Thanks Bloden - The '_T' stands for turtle (long and uninteresting story) - so the pic seemed appropriate given my (now prior) habit of eating a lot of fruit....

Aw, go on, tell us the story!