# MY FIRST DKA & HOW I DISCOVERED I HAVE TYPE ONE DIABETES.



## NealSawyer (Jul 16, 2020)

Howdy

I am Neal Sawyer. I am a newly diagnosed Type One Diabetic. It is in the gene pool but at the age of 35, I thought I'd dodged the bullet. Unfortunately, it caught me and got me in the end and it did so with an act of great vengeance in the form of a DKA.

I'm still in the first few weeks of mist. While it is all very overwhelming, I am attempting to maintain a positive outlook. The temptation was to bury my head in the sand. The thought of announcing my disease made me feel vulnerable and insecure. Anyway, I put that to one side and have yesterday published a blog about my experience and diagnosis. Writing about this was a huge step in accepting what has happened. Not only that, if someone out there might gain a drop of comfort from realising they are not alone it has been worthwhile.

If you fancy, you can read the full story below:
https://nealsawyer.wixsite.com/nealsawyer/post/the-sawyer-post-issue-4-my-first-dka

I work as a freelance writer and musician. I'm hoping to be vocal about this as much as I can. I want to face it head-on While I haven't got a massive audience, I hope that every little helps.

It is lovely to meet you all anyway my new friends.
I wish you health in body and mind.
Stay safe.
Neal


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## Bruce Stephens (Jul 16, 2020)

NealSawyer said:


> It is in the gene pool but at the age of 35, I thought I'd dodged the bullet.



About 15% of all people with Type 1 are diagnosed at age 30-39. See the chart I linked here, https://forum.diabetes.org.uk/board...-type-2-diabetes-5days-ago.87826/#post-986660


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## Pumper_Sue (Jul 16, 2020)

Hello Neil and welcome.
If you have the mind set that diabetes is a condition and not a disease it does help  Welcome to the club no one wanted to join.


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## stephknits (Jul 16, 2020)

Hi Neal, welcome to the forum.  I was diagnosed at 42 and we have quite a few late starters on here.  Glad you have joined us, am off to read the blog


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## Lucy Honeychurch (Jul 16, 2020)

Hello and welcome, I'm another late starter, 46 and also diagnosed in DKA.


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## everydayupsanddowns (Jul 16, 2020)

Welcome to the forum @NealSawyer

Sorry to hear about your DKA, hope it’s your first... and last!

We have lots of experienced T1s on the boards whose brains you can pick about any and all questions, uncertainties, quandaries, or simply to have a good ole moan about the fickle and frustrating nature of the whole silly business of pancreas impersonation.


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## Flower (Jul 16, 2020)

Hello and welcome @NealSawyer glad you’ve joined us- sorry you needed to!

I hope you’re feeling a whole lot better with an insulin supply re-established. DKA is so frightening.

I followed the rules and was diagnosed as a child none of this hanging around until I was older stuff. I hope things are settling for you.

You’re fast out of the blocks with your blog! It’s taken me 42 years to write a few thoughts down.

Wishing you well


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## rebrascora (Jul 16, 2020)

Hi from me too. I was diagnosed last year at the age of 55 so I am a significantly later starter than you but by no means the oldest. Thankfully I dodged a DKA by drinking pints of water as soon as the thirst hit and then cutting carbs. 

I hope you find this forum as hugely beneficial as I have. Sharing your experiences with people who understand is really helpful with diabetes and there is a wealth of knowledge and experience on this forum. 
Pleased to have you on board.


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## NealSawyer (Jul 16, 2020)

Thank you all so much for the welcome and kind words. It means a lot and I'm happy to have joined the forum as your words are comforting.
It is quite amazing how uniquely the condition (thanks @Pumper_Sue) affects us all. I was led to believe I was somewhat of a late starter at 35 but reading the posts this seems quite the contrary.
You all have my admiration for openly talking about this though. It is all new to me at the moment and I know there is a long road ahead but I will be sure to try and get involved.
Huge respect!


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## Thebearcametoo (Jul 16, 2020)

Hi and welcome. As with all chronic diagnosis it will take some time to adjust and you’ll have your ups and downs but it’s a manageable condition and there’s some nice kit around that can make it easier as time goes on.


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## stephknits (Jul 16, 2020)

Partha Kar tweeted a really interesting table of all those diagnosed with diabetes 1 & 2 in 2018 and which age brackets they were in.  I will try finding it and posting it, or a link


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## stephknits (Jul 16, 2020)




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## rebrascora (Jul 16, 2020)

Just read your blog and can relate to a lot in it although as I said, I have so far managed to avoid DKA.... long may that continue. 
Your hitchhiker analogy is a good one. We often refer to it as the Diabetes Fairy (DF).... probably more a mischievous elf in reality. Think I would rather have the DF visit than be constantly checking my rear view mirror for the psycho hitchhiker in the back seat!   .
I remember in the early days things were all pretty scary eg. those first few hypos feel like you are going to die, but after a few months you get used to them and your body doesn't panic so much and you accept that sometimes they just happen and I take my treatment and usually continue with what I was doing. Sometimes it is my fault because I get things wrong and sometimes it is the DF throwing a spanner in the works. You learn to roll with it, but every now and then it gets really frustrating and then the forum is handy to come and have a rant, because we all need that pressure release occasionally and we understand that and sometimes someone will come up with a corker of a suggestion to make life with the DF a little easier.


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## trophywench (Jul 17, 2020)

Hi Neal, welcome to our merry band!

I wasn't quite such a late starter but as you have noted each of our experiences is unique - for the simple reason that each of us is unique!   OK some things are very similar at times but by no means always so when something happens we're not too sure about why or how, it's very useful to be able to canvass other folks' own experiences.   But having done that if we don't get the same answer from a majority and hence be inclined to believe that - we have to go with our own judgment.

Only time and experience will inform us whether we should now trust our own judgment!

None of us claims to be a diabetes expert - except with our very own (unique) diabetes, eventually.  Cos you will !


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## NealSawyer (Jul 17, 2020)

I'm still finding it hard to comprehend why it happens when it happens. Out of interest more than anything. I do ruminate with guilt that somehow I could have prevented it but I have read that this is not the case? 

The diagnosis age is so broad and doesn't seem to follow a trend. It is like a ticking time bomb for anyone with the gene. I suppose it is one of those mysteries. I think technology and research are rapidly improving and big discoveries are likely to be unearthed in the future. I must admit, I am convinced I had COVID back in February. Reading the reports of a link with the virus and the onset of Type One would make a lot of sense in my story. 

This is a great place to vent, and I'm sure in due course I will. I'm already compiling a list of annoyances.  I am also considering writing a blog post for newly diagnosed. Mainly outlining the basics and everything you can expect in the early days of meeting the Diabetes Fairy (always learning @rebrascora). The information is so overwhelming for a newcomer. For instance, I have never had a repeat prescription in my entire life and now I have a full-on shopping list. Can't complain though as that's the magic that keeps me ticking over. Just more the practicalities of re-ordering the meds.

I hope everyone enjoys their day in the sun this beautiful Friday. A Gin and slimline tonics allowed right?


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## Pumper_Sue (Jul 17, 2020)

Hello again Neal,
You can not prevent type 1 so waste of energy even dwelling on it.  It's odd the way it runs in some families and yet none in others. If you look through your family history you might find other autoimmune conditions though which could be the trigger for faulty genes.

Re prescriptions......... have you filled in the forms so you can have free prescription. (diabetes perks) The prescription is not automatically free it's the certificate you need.


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## KARNAK (Jul 17, 2020)

Hello @NealSawyer welcome to our and yours now wonderful forum.

Lots of advice on the forum so take advantage of it and ask any question you like
nothing silly on here, from ED to the back tyre on my bike won`t stay up.
I`m a late starter 63 when diagnosed T1 like you DKA took me into hospital with
blues and two`s and siren going, without this forum I probably wouldn`t be here now.

Learn as much as you can without overloading your brain keep in touch with your hospital
team especially the DSN, haven`t read your Blog yet but will do, take care stay safe.


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## SB2015 (Jul 17, 2020)

NealSawyer said:


> A Gin and slimline tonics allowed right?


If it’s not then I am breaking the rules every weekend!!
Welcome to the forum Neal and thanks for posting the link to your blog.  A good read, but not such a good experience for you.

I am another late starter with DKA at the age of 53.  It is a shock at any age and a very steep learning curve.  This is a great place for practical advice as well as support.  More than once I have emailed when away on holiday and been glad of the knowledge that I can access on here.

I was recommended the book Type1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas.  Ignore the age reference.  As you have seen this happens at any time, and the info in the book is very useful, with clear explanations and regular updates in the new tech available.

What insulins have they started you on ?  Tap into the help from your Diabetes Specialist Nurse (DSN) who will work with you to get your levels settled and enable you to make adjustments to your doses.

Fire away with any questions you have .  Nothing is considered silly and someone will come up with an idea.  The Diabetes Fairy will find you at times and just when you think things are sorted decide to play nasty.  We can only do the best we can and just tell her she is not welcome (Could she have her own song?  I read your original post soon after I had finished a singing lesson in which we were talking about composition.  A whole new area to look at for me which I have never done before.  Loving it)

Keep in touch.


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## trophywench (Jul 18, 2020)

@NealSawyer - avoid Fevertree Tonic water when you can - it is absolutely lower carb than 'normal' tonic but is not actually carb free, trouble is it's much nicer tasting than Schweppes Diet ......

Here I am, 48 years after diagnosis, and how the hell do you imagine I have survived?    

As the Spanish (men) are inclined to toast each other, Amor sin suegra!


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## NealSawyer (Jul 23, 2020)

The gin and tonic advice is music to my ears! I'm glad one of my favourite drinks doesn't have to be banished to the history books. I prefer slimline anyway so I am delighted with this news! I will be sure to try the book @SB2015, thank you!

I'm on 6 units before breakfast and lunch, then 7 units pre-dinner. My dosage of long-lasting insulin has been reduced to 22 units before bed as I was dropping quite a lot during the night. I feel like I am in a holding bay at the moment as I'm yet to see a specialist due to COVID. I am currently relying on phone contact but they are eager to get me in once the backlog is sorted. That's when they'll give me a "thorough once over" in their words. I imagine that is when I can start tweaking insulin levels to suit and allow me more freedom.

A few of you have kindly mentioned posting some questions on here. I've plucked up the courage to ask if that is OK? I didn't know whether to start a new thread or continue in here so excuse me if I am not abiding by the rules. I will use the helpline soon but writing these down is easier at this point.

Firstly, I seem to be suffering from chronic fatigue. I just can't seem to shake it and onsets as soon as I wake up. I'm sleeping fine, I go out like a light, better than I ever have. Usually, I will have around a good 7 hours. I've tried keeping hydrated, I have an app that instructs me when to take water on board. I also exercise daily (other than Sunday). I burn 360 calories on a step machine one-day and do weights and floor work (planks etc.) the next day. I have had my first two hypos and both have come on weight lifting days interestingly enough. Fatigue does seem a major issue and I am struggling to focus on the easiest of tasks which makes me concerned.

The next question is quite embarrassing to bring up but the doctors and specialist are persistently questioning my BMI (even though I weren't weighed in hospital). This is a frequent dig, the only time a specialist has said different was one helpful specialist who aided with the adjustment of my long-lasting insulin. I raised my concerns not being able to lose weight and he said this is just the way I am which was reassuring as I didn't feel blamed in any way. Frankly, other than the aforementioned specialist, the constant judgement is getting me down as it feels like it is something out of my control. The reason I am so frustrated about this is I am very broad in stature and I also feel so helpless as there seems to be nothing more I can do. Here is the thing, I'm very strict with my diet. I weigh all my food on scales and calorie count to the gram on an app. 6 out of 7 times a week I will be within what is considered the correct calorie range or under. I will have one cheat day but even still this is nothing too drastic. A typical daily diet is a breakfast of two boiled eggs and seeded wholemeal toast, lunch of wholemeal tortilla wrap with white meat and lettuce, then salad and a grilled chicken salad for dinner. This is my own diet that has helped me maintain my blood sugar levels to be fair but the BMI still comes up into question. If I have dessert it will be greek yoghurt and nuts. Even with this prolonged diet and alongside the exercise, I cannot seem to shift weight and insulin seems to affect this. The doctors and specialist are quite judgemental about the BMI but I honestly feel like I would struggle to do anything more without delving into skipping meals, starvation or frequent marathons. It seems ill-informed and unsympathetic. It is so frustrating, I don't feel like there is anymore I can do to improve my BMI. Does anyone else have similar issues, could this be down to some kind of diabetic metabolism problem?

All in all, I suppose it has effected my mental health. Another blow to deal with. I feel judged and helpless on many fronts. Maybe the more the dust settles it feels more difficult everything seems to deal with. Every day seems like a battle of overcoming the odds and screaming to be heard. I lost work after COVID hit and tried to remain positive but this has kicked me down. When I fell on hard times I'd often turn to manual labour but that seems like a recipe for disaster at the moment. I'm determined to overcome this but I fear I may need some emotional support somewhere down the line.

Sorry to go on and on, as I previously said it does help to write these things down. I will overcome this and pluck all the positivity when it comes but today might just be one of those days!

I hope that you're all keeping safe and well.


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## trophywench (Jul 23, 2020)

Exercise can affect BG for up to 48 hours thereafter.  I spot that both sorts of exercise you have mentioned - or rather neither - involves being out in the fresh air like eg cycling, walking, jogging, running or playing a 'team' game would.  Things that us old uns used to call aerobic exercise.  Why would that be?

Secondly diabetes doesn't give a fig about calories, it is purely only interested in converting anything you stick into your gob into glucose to fuel your body.  If it isn't getting enough food or insulin (either exogenous or endogenous) to convert into sufficient glucose to sufficiently fuel your body, then you will be fatigued.

Hence I feel (and I'm no expert!!) it will be much more than likely that you're going to have to re-think that diet, because your body is absolutely NOT the one you have been used to having now.  You can go TOO low carb.


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## Bec2015 (Jul 25, 2020)

Hi @NealSawyer, I'm new to the forums - sorry I'm replying long after everyone else.

There are no silly questions with this condition, and you'll find that you're always learning! I'm 5 years in and still learning  

I just wanted to add that usually you would get a lot of outpatient support being newly diagnosed (or at least that was my experience). I think you've just had it that bit worse because of Covid-19. Once outpatient appts are happening again, you should get an appt with a dietitian. They will be able to talk you through which foods have the highest impact on your blood sugars, but also advise you on maintaining a balanced diet and hopefully avoiding that fatigue. Your consultant will help teach you how to calculate insulin for the food you want to eat, and of course there are many helpful courses you can go on to help assist your knowledge (i.e DAFNE) once they're up and running again.

This lockdown has been a test on all of us, I just keep reminding myself that this is temporary and better days are coming.


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## Amity Island (Jul 25, 2020)

NealSawyer said:


> Howdy
> 
> I am Neal Sawyer. I am a newly diagnosed Type One Diabetic. It is in the gene pool but at the age of 35, I thought I'd dodged the bullet. Unfortunately, it caught me and got me in the end and it did so with an act of great vengeance in the form of a DKA.
> 
> ...


Howdy to you too Neal!

This forum has been an amazing experience for me, there's a whole wealth of help from many people. I've learnt so much about many things, including diabetes. When I first started on the forum, like you (and probably many), I was having difficulties and needed some extra help from those up on deck (diabetics) apart from those steering the ship (Doctors and Nurses) I did more reading and less posting, now I tend to do more posting and less reading, mainly because of the exponential learning curve.

I was diagnosed at 23 years of age, in my _last_ week at Uni and since then, diabetes has never stopped me from doing anything.

Regarding your diagnosis, keep in mind that most people with type 1 diabetes (like me) don’t have relatives who do, so it often seems to come out of nowhere.  There’s no diabetes gene that gets turned on or off to give you type 1. It's a combination of genes and triggers.

Neal, here's a few stats pulled from the web.

If you’re a father who has type 1, your child has about a 1 in 17 chance of getting it.
For mothers with type 1 diabetes who give birth:
Before age 25, the child has a 1 in 25 chance.
At 25 or older, the child has 1 in 100 chance, which is about the same as anyone else.
If the parent had diabetes before age 11, the child’s chances double.
If both parents have it, the odds could be as high as 1 in 4.
If the parent also has a condition called type 2 polyglandular autoimmune syndrome, their child’s chance of having type 1 diabetes would be 1 in 2.
If your parents don’t have it but a brother or sister does, you have about 5% chance of getting type 1. That’s about the same as if your father had it. If your identical twin has it, though, your odds may be as high as 50%.


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## Bruce Stephens (Jul 25, 2020)

Bec2015 said:


> and of course there are many helpful courses you can go on to help assist your knowledge (i.e DAFNE) once they're up and running again.



A number of regions are piloting remote DAFNE courses, I think, so potentially those can happen before next summer. (I'm guessing next summer is the earliest in person groups might be safe.)

(As a side question. People on the forum have complained that they've found it hard to get a place on a course like DAFNE suggesting that there's a shortage, and yet I've also read that take up of referrals to such courses is low (suggesting that there aren't enough people for the available courses). Is it that the two things are really different: are these referrals just some consultant saying "I think this patient ought to go on a course" rather than an actual offer of a place? Maybe it's also the case that many patients can't take up an offer for practical reasons, of course.)


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## trophywench (Jul 26, 2020)

Well I've certainly recently had good news with regard to Outpatient clinics, firstly going back to April Pete had a telephone appointment with his oncologist (Prostate Cancer a few years back, had it removed, must have missed a bit so 3 weeks of daily Radiology thereafter, so has to have 6 monthly blood tests for his PSA level so Dr K's secretary told him names and phone no's of 'home visiting phlebotomists' which OK he had to pay for - all of £11, but that result was excellent so Dr K said as far as he was concerned he was happy to sign him off.)  Meanwhile my diabetes clinic and a psychology one both in April were cancelled but about a fortnight ago the Psych lot wrote and asked if they could ring me, Yep and they did, she doesn't thing there's anything likely to be partic untoward but she'd arrange 'a head scan' anyway to make certain.  Thursday I received a letter to say my CT head scan had been arranged for Saturday 1st August - then at lunchtime today another letter to say my MRI head scan had been arranged for Thursday 20th August.

Soooo - now I'll have to ring em on Monday to discover if I need both, or what !  

Meanwhile my diabetes one has been confirmed re arranged on 12th August so I have booked my blood taking for 10th Aug for that.


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## Bec2015 (Jul 26, 2020)

@Bruce Stephens I'm not sure how it works nowadays, I went on my DAFNE course back in 2017 and I had been told that you needed to have had a diagnosis for at least 12 months before attending DAFNE. However, there was someone else on my course who had only been diagnosed for 3 months - so I guess it depends on your consultant and what they feel is best?

After I'd told my consultant that I wanted to attend a DAFNE course, he put my name down and I was contacted by the local team who run the courses. They gave me a choice of 3 dates and 2 locations (if I remember correctly). I think the problem for a lot of people is that it's a week long course (Mon-Fri) and they can't necessarily get that time off work authorised, or they don't want to use a week's holiday. I just used a week's holiday because I felt that it was worth it.


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