Type 1 @ 37 after DKA

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UnexpectedDiagnosis

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Relationship to Diabetes
Type 1.5 LADA
Hi all, at the start of December I was showing some symptoms of diabetes and contacted my GP. They organised a blood test for just after Christmas but within that 3 week period I had lost around 15kg (from 94kg) but I am 6"3 and I've always been fit and healthy, I'm not obese etc.

I called the GP a couple of days after my blood test and begged for the results only to be told I had to wait until next Thursday, which was another week away. I did kick off a little and they then agreed to talk over the results the following Monday which was another 4 days away. Over that weekend my dehydration reached epic proportions and then I started vomiting severely.

Come Monday I again called my GP, I begged for an appointment and they barely agreed to a call back. Once the doctor called and I explained my symptoms I was informed to go immediately to A&E as I was in DKA; a term i had never come across until a week ago. The GP after that also proceeded to prescribe Metformin and despite having difficulty breathing she was explaining that "when you're out of hospital you'll need to take these and even told me how and when" . My hba1c test showed mmol of 99.

Upon reaching hospital and spending a day in resus I was told "you had 24 - 30 hours" and I'm presenting as a type 1 diabetic.

The hospital staff were incredible and they saved my life.. fast forward 6 days later and I've got home, insulin and needles in tow and having to start a life controlling my diet. I'm furious with my GP and their inaction when I had already self diagnosed, the fact they also prescribed medicine before my release from hospital I found an absolute joke without a full clinical picture.

Mentally it's been a tough week and it's hard not eating the same diet as I previously had. I've always eaten fairly healthy but I've never had to watch carbs etc.

Got a book "carb & calorie counter" but it'll take me a while to get used to this change. It's hard not feeling in full control. I was told it's rare to suddenly present as type 1 at 37. I've taken lots of positives from this experience but it has been tough... tonight i feel very tired.

Hoping this forum will help through this journey, good to meet you all
 
Hello and welcome. Have you been shown how to adjust your insulin or do you have a follow up appointment to learn that? You shouldnt have had to make any changes to your diet, as you'll take insulin to match the carbs.
 
Hi and welcome.

So sorry to hear you had such a traumatic and frustrating start to your diabetes diagnosis but pleased that the hospital staff were on the ball. Have you been referred to the diabetes clinic and do you have a contact number for the clinic or a Diabetic Specialist Nurse (DSN) to get support when you need it.
I was 56yrs old at diagnosis and it happened very suddenly one night after a meal out at a pub. I suddenly started feeling an unquenchable thirst and I spent 2 weeks drinking pint after pint of water day and night and weeing for England of course 🙄. I too figured out it was diabetes and started to cut my sugar intake before I eventually sought medical help. I was lucky in that I had the blood test on the Monday and was diagnosed on the Wednesday with an HbA1c of 112 and thankfully didn't need a trip to hospital, although I was assumed to be Type 2 and prescribed Metformin and then Gliclazide as well. It was 6 weeks before I was started on insulin, but by then I had cut my carbs right down to almost nothing, but HbA1c had increased slightly. It took another 3 months after that to get a confirmation of Type 1... one of the blood tests takes about 6 weeks to get a result.
The problem is that many GPs seem to believe that Type 1 diabetes only develops in children and young adults, so they assume, if you are a mature adult, then it must be Type 2.... until unfortunately in cases like yours, it all goes horribly wrong. I was lucky, probably because I cut my carbs right down and was drinking lots of plain water, that I didn't develop ketones and my practice nurse had enough nouse to realize that I wasn't a typical Type 2 and had sought advice from the consultant about my case.

Anyway, enough about me, but just wanted to let you know that you are not alone and there are a lot of us who developed it later in life and whilst it is really overwhelming at first, you will slowly start to get into a routine with it and be able to eat a normal diet and learn to calculate and inject the right amount of insulin for what you want to eat..... or at least mostly, but we all get it wrong from time to time, so don't worry about it. The tech available these days to help us manage our diabetes with insulin is amazing (at least when it works properly 🙄) and with a bit of thought and planning you should be able to do pretty much everything you did before.... but it may take you a year or two to get to grips with it and feel confident managing it.

Would you like to tell us which insulins they have given you and how are you managing with testing and injecting? Have you been given a Libre sensor to monitor your readings or are you relying solely on finger pricking at the moment?
 
Hello, and welcome to the club nobody wants to have to join! I was 51 at diagnosis, and spent the first few months misdiagnosed as Type 2. Luckily I avoided DKA, probably because I’d cut my carbs to the bone.(I’d read that this would help a Type 2, and it didn’t work, but it did keep me below danger level until I got onto insulin and could start eating normally again)
There are a fair few of us on here who developed Type 1 as 'mature' adults. I suspect we have all gravitated here to find kindred spirits because we were told it was quite rare.
 
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Welcome to the forum.
What a horrible experience you had to go to to get here.
Unfortunately GPs are not always on the ball but I give them some slack as they have to deal with so much. I know that’s easy to say when I was not the one in hospital with DKA. However, the first GP I saw diagnosed me as having a UTI. Thankfully, the second GP was more on the ball. She test my blood sugars there and then and diagnosed Type 1 diabetes because, despite being in my mid 30s, I was too slim to have type 2. Ok, so I have subsequently learned it is possible to be slim with type 2 but I am grateful that assumption was never made (maybe she didn’t want to take the risk after her colleague had got it so wrong).

You say you are struggling with your diet. This is unnecessary. There is a lit written about diabetics needing to eat a low carb diet. This is for people with type 2. With type 1 we can eat normally but there are some challenges around learning how to dose insulin to match the food we eat. Typically, we are started on fixed doses of insulin but advised to eat a normal diet so they can work out how much insulin we need.

I would never wish Type 1 diabetes on my worst enemy. However, it is better to have it today than even 5 years ago. The amount of tech available to help us out is so much better than it was. I highly recommend asking for a CGM (usually a Libre) and assistance with adjusting insulin.

I would never say the first years with diabetes are easy but they usually get easier and should not stop you living a full life. After 19 years of eating what I want, drinking what I want, travelling where I want, trying out as many activities as I want (flying trapeze and sky diving to name a couple), I have no complications and am generally fitter than others my age.

Sorry, I have rambled so I will end with two tips
- don’t let diabetes dictate your life
- ask any questions you want.
 
Welcome to the forum @UnexpectedDiagnosis from another late starter with T1.
There are quite a few of us in here, and a misdiagnosis is quite common for adults.
So sorry you had such a bad experience on the way to your diagnosis.

As others have said it is a lot to learn at the start but definitely does get easier. The best analogy I was given is that it is like learning to drive. It all seems very complicated at the start and then much of it becomes automatic, and you are just dealing with the unexpected.

As @helli said there is no need to eat a low carb diet with T1. You can eat whatever you want once you have sorted out your insulin to carb ratios and learnt to calculate the carbs. It is surprising how quickly your head fills with carb information of the foods that you eat commonly.

Any questions are welcome on here. Just ask. Nothing is considered silly and there is a wealth of practical experience to tap into.
 
There's no need to eat low carb, but some T1s do..i find it makes the spikes lower and easier to control, but i do have muselli for breakfast everyday to bump up my carb count as i don't think its good to cut out too many carbs.
Its funny, the more i hear other's diagnosis stories the more i realise how easy i had it. Dec 21. It took 2 weeks to get a blood sugar test, but then, i'd put it off for a good month before contacting gp! I told them what i thought it was, and the doctor said he didn't think i had diabetes. When the nurse told me i had it i cried, then realised i'd been right which cheered me up a little! I was then sent to the hospital, it was friday night, no cabs to be had, so i walked into town, waited about 4 hrs, and by then my ketones had gone down. Cos i was thin (I'd lost a lot of weight) everyone was suspecting T1 which helped.
At first it was hard, but it does get easier.
 
If you ever meet a Type 1 Diabetic who was actually expecting a diagnosis of it pray tell us - I've had it over 50 years now and not yet met anyone who was! PITA indeed, but take your time to get used to it whilst you learn as much as possible about how you can best control it and make it fit in with you
 
Welcome @UnexpectedDiagnosis Type 1 is a bit like Monty Python’s Spanish Inquisition - nobody expects it! 9 out of 10 people diagnosed with Type 1 have no close family members with it. It’s a shock, both physically and emotionally.

My advice is to be kind to yourself, take things slowly, and know that you do not have to go on a special diet. Once you’ve got your insulin sorted, you can just eat a pretty normal diet. Type 1 isn’t really about the food, it’s about the insulin. ‘Bad’ blood sugars are almost always the result of the wrong insulin dose, not the food you ate. Our job - and boy, is it an annoying one! - is to be our own pancreas. We’ll never get it right 100% of the time, but it does gradually get easier as you learn more.

Most importantly, you’re not alone 🙂
 
Welcome to the forum @UnexpectedDiagnosis - sorry you had such a torrid and dramatic diagnosis experience. Thank goodness you eventually got the urgent attention you needed. I guess one of the challenges for healthcare professionals is that some forms of diabetes are generally slow moving and pretty common, while others are aggressively life-threatening and require very urgent action.

The myth that T1 is exclusively something that develops in childhood persists, even though 50% of cases are diagnosed in adulthood and T1 can develop at any stage of life, right up to 80s and 90s. Some years ago I conducted a straw poll on Twitter and a couple of forums about age of diagnosis with T1, and one unexpected snippet of information came from the number of people volunteering information about being diagnosed T2, then changed to T1. It seems that a diagnosis in your mid 30s is about the most likely time to be assumed to be T2, when you are actually T1.

And yes - I agree that there‘s absolutely no need to reduce your carbohydrate intake below the level that you would normally eat in a balanced diet unless you find it easier to manage your doses and glucose levels that way. High carb, moderate carb and low carb are all options for you - which ever suits you best 🙂

Good luck, and keep asking away with any questions as they crop up 🙂
 
Hi @UnexpectedDiagnosis, sorry to read of your rough start after diagnosis with your GP, it was so good that your call back you were told to go to A&E and got a proper diagnosis there! Unfortunately it still seems that a lot of adults presenting with symptoms get classed as T2 regardless. It took 20 years for my diagnosis to be moved to T1, despite being solely on insulin for the last 15 of those years with amounts and BG reactions the same as T1. It at least seems that the healthcare profession is a little more open to considering T1 for adults presenting with symptoms now. @everydayupsanddowns - very interesting to hear that 50% of T1 cases are diagnosed in adulthood.

At least now you are on insulin you will be able to get back to eating normally and matching your insulin to the carbs. There’s a lot to learn and take in but it sounds like your hospital will give you all the information you need and of course, there is also this forum with loads of really knowledgeable people who have tons of practical day to day experience.
 
Eternal422 said:
very interesting to hear that 50% of T1 cases are diagnosed in adulthood.
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Yes isn’t it. Quite surprising really! Though we have a wide variety of ages at diagnosis here. Heard that snippet of info in a DUK lab tour of a research facility in a hospital near me.

Other forum members have also heard it from various places I think.
 
everydayupsanddowns said:
The myth that T1 is exclusively something that develops in childhood persists, even though 50% of cases are diagnosed in adulthood and T1 can develop at any stage of life, right up to 80s and 90s.
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I think a lot of that will be down to type1 synonym being 'juvenile diabetes'

everydayupsanddowns said:
Some years ago I conducted a straw poll on Twitter and a couple of forums about age of diagnosis with T1, and one unexpected snippet of information came from the number of people volunteering information about being diagnosed T2, then changed to T1. It seems that a diagnosis in your mid 30s is about the most likely time to be assumed to be T2, when you are actually T1.
Click to expand...
It was explained to me at the time (2004) that the gold standard tests for type1 (so: c-pep?) aren't applied to people over 35 because there are so many people presenting with "diabetes" at 35+ and like 95% of them will be found to have type2 of some description. I think each test at the time was over £400, sure to be much more now. In any case much of the treatment is the same: stablise bg levels with insulin if need be, then (for me at the time) sulphonylureas and the usual metformin. My T1 LADA was dx'ed in retrospect some 7 months later when the sulphonylureas no longer had any effect.

In younger people the progression from there being only a little less insulin than what is needed for a carby meal to almost none at all, for anything, is very much quicker, so they get the gold standard test if type1 is suspected.
 
UnexpectedDiagnosis said:
Hi all, at the start of December I was showing some symptoms of diabetes and contacted my GP. They organised a blood test for just after Christmas but within that 3 week period I had lost around 15kg (from 94kg) but I am 6"3 and I've always been fit and healthy, I'm not obese etc.

I called the GP a couple of days after my blood test and begged for the results only to be told I had to wait until next Thursday, which was another week away. I did kick off a little and they then agreed to talk over the results the following Monday which was another 4 days away. Over that weekend my dehydration reached epic proportions and then I started vomiting severely.

Come Monday I again called my GP, I begged for an appointment and they barely agreed to a call back. Once the doctor called and I explained my symptoms I was informed to go immediately to A&E as I was in DKA; a term i had never come across until a week ago. The GP after that also proceeded to prescribe Metformin and despite having difficulty breathing she was explaining that "when you're out of hospital you'll need to take these and even told me how and when" . My hba1c test showed mmol of 99.

Upon reaching hospital and spending a day in resus I was told "you had 24 - 30 hours" and I'm presenting as a type 1 diabetic.

The hospital staff were incredible and they saved my life.. fast forward 6 days later and I've got home, insulin and needles in tow and having to start a life controlling my diet. I'm furious with my GP and their inaction when I had already self diagnosed, the fact they also prescribed medicine before my release from hospital I found an absolute joke without a full clinical picture.

Mentally it's been a tough week and it's hard not eating the same diet as I previously had. I've always eaten fairly healthy but I've never had to watch carbs etc.

Got a book "carb & calorie counter" but it'll take me a while to get used to this change. It's hard not feeling in full control. I was told it's rare to suddenly present as type 1 at 37. I've taken lots of positives from this experience but it has been tough... tonight i feel very tired.

Hoping this forum will help through this journey, good to meet you all
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Hi Mate,

A very similar thing happened to me in August. I was also diagnosed with T1 at 40 years old after seeing the GP due to my weight loss and every other symptom under the sun and was also rushed straight to hospital. It is a life change but one thing I can tell you being a few months in is that it genuinely isn't the end of the world. I have just had my Hba1C come back from my latest blood test as 45, which the doctor pretty much said is incredible and I have excellent control.

I continue to live as normal eating and drinking exactly what I did before, only difference now is taking the insulin to counteract the BG rise. Hopefully you will be offered a Freestlye Libre soon, and that is a game changer. Counting carbs will also become easy as you progress. My time in range with what they call "juvenile" diabetes is 79% over the last 90 days.

Just take everyday as it comes and you will be absolutely fine. If you have any questions or need any advice from a relative newbie like me, drop me a DM.
 
Even if we drop dead, it still won't be the end of the world, at least I hope not cos our great grandkids are all only little at the mo! (well the eldest is approx 12, but you know what I mean!)
 
Well that freaked me out reading it… it’s like I’ve written it! The exact same thing happened to me over Christmas/New Year. Was in hospital for 5 days with DKA, diagnosed type 1 on 31/12/22. I’m 32.
How are you getting on? I keep having hypos… I have some knowledge of diabetes (had gestational diabetes and both types in my immediate family) I sort of thinking I’m type 2 rather than 1 but still waiting for antibodies blood test result and not seeing diabetic doctor till end of March!!
 
Welcome @Frangellica 🙂 Sorry you’ve had to join us, but this is a very friendly supportive forum, so do ask whatever you want.

You mention being previously diagnosed with gestational diabetes. It’s possible that was actually the beginning of Type 1. I know a number of women who were thought to have GD but were later diagnosed as Type 1. DKA is rarer in Type 2s, but with Type 2 in your family, it’s good they’re checking your diabetes type.

Sorry you keep having hypos. What insulins are you on, and are you on fixed doses of your fast/mealtime insulin or have you been told how to adjust your dose for the amount of carbs you’re eating. Do you have a Libre yet?
 
Sorry for the late replies... I saw all the replies and admittedly at the time my brain found it a little overwhelming, honestly I think I've been in a little denial and it has taken me some time to process this all.

Thank you all so much for your replies, too many to quote but hearing I'm not alone is a help as at times it feels like you're the only one. I've had a appointment with the diabetic specialist nurse who confirmed that my pancreas is basically making no insulin but I should have my formal diagnosis back any day now.

I've tried x2 libre 2 sensors, the first one lasted a day and failed. My second was a god send for 5 days and then again just ended which is quite frustrating as they seem handy; hoping apple come through with their planned non invasive CGM on their watches!! Couple of years they should be here.

Initially I did change my diet but I found I was eating too clean and kept having hypos: one reply you said you keep having them, me too and its a pain in the arse lol. I started back at work a couple of weeks ago but they didn't phase me back and it just triggered major anxiety as I felt out of control. Trying again tomorrow but this time with a structured phased return.

The mental journey has been and is tough... I was told its highly likely a virus such as covid caused my immune system to attack my pancreas and cause this.. but I now have to accept this and push forward!! It was certainly a new experience feeling so fragile and vulnerable after never being in hospital and even when I was in A & E I didn't feel close to death. I think that's the bit that fried my brain a little.

How did you all find flying for the first time with T1? I am going away in May.

Lastly I am waiting my appointment for a carb counting course
 
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UnexpectedDiagnosis said:
How did you all find flying for the first time with T1? I am going away in May.
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I can't remember my first time flying with T1. I was lucky that, on my first appt, my DSN told me "diabetes should not stop you doing what you want". I was determined to prove here right from the start including flying.
I have flown hundreds of times since then and diabetes barely makes a difference. In fact, until I had an insulin pump, I could count on one hand the number of times it has made any difference.
Airlines don't need to know unless they ask if you have any sharp items in your hand luggage. I rarely get asked since I check in online and either have only hand luggage or do a bag drop Airport security do not have to be told unless they explicitly ask which is very very rare. There is no reason to pre-inform anyone.
Whenever I stay anywhere overnight, I take twice as much diabetes stuff than I think I will need and keep it in my hand luggage with me at all times. I keep my hypo treatment with me in my seat (you don't want to have a hypo when the seat belt sign is on and realised your hypo treatment is in the overhead locker).
I carry a letter from my diabetes clinic but have only been asked to show it twice
I make sure my travel insurance covers my diabetes.

And, when I am not traveling for work, I enjoy my break away from home as much as I did before diabetes
 
helli said:
I can't remember my first time flying with T1. I was lucky that, on my first appt, my DSN told me "diabetes should not stop you doing what you want". I was determined to prove here right from the start including flying.
I have flown hundreds of times since then and diabetes barely makes a difference. In fact, until I had an insulin pump, I could count on one hand the number of times it has made any difference.
Airlines don't need to know unless they ask if you have any sharp items in your hand luggage. I rarely get asked since I check in online and either have only hand luggage or do a bag drop Airport security do not have to be told unless they explicitly ask which is very very rare. There is no reason to pre-inform anyone.
Whenever I stay anywhere overnight, I take twice as much diabetes stuff than I think I will need and keep it in my hand luggage with me at all times. I keep my hypo treatment with me in my seat (you don't want to have a hypo when the seat belt sign is on and realised your hypo treatment is in the overhead locker).
I carry a letter from my diabetes clinic but have only been asked to show it twice
I make sure my travel insurance covers my diabetes.

And, when I am not traveling for work, I enjoy my break away from home as much as I did before diabetes
Click to expand...
Sounds good, I carry hypo treatment in my medicine bag at all times and I've stashed sweets in my bags. I think as long as I plan I'll be fine.. I don't think it'll make much difference to flying. I guess all this just feels very new but it is getting easier.
 
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