Newly diagnosed and reeling

[Lynne C J]

Morning all. I was diagnosed last week with type 1 aged 42 and am a complete mess. Apparently I was very unwell but my friend is a diabetic nurse and she called it-even though the GP said it was type 2. 3 days in and out of hospital with BG and ketones going through the roof and bam! Here’s your insulin for the rest of your life. My Hb1ac was 111, BG 24 and ketones near 3 and I’d lost 10 kgs, how on earth the GP thought type 2 beats me.

I had breast cancer 3 years ago and my, that was a walk in the park compared to how I’m feeling now, emotions all over the place and also jittery due to thyroid going into overdrive.

I’m desperate to talk to people who have been diagnosed at this stage in life-anyone i know with type 1 have had it from childhood and have had years to get used to it.

Right now it’s all a bit overwhelming.

Edited by Mod

I was diagnosed at 33, big shock, I can well imagine how you are feeling, it's a lot to take in. You'll get lots of help on here, don't be afraid to offload, ask any questions or just want some sympathy, we've all made the save journey. You'll get there and it needn't stop you doing anything (unless you wanted to fly a plane!). Good luck

 

[Japes]

Welcome @LyndsayM.

I really am not the one for advice about going back to work as I was back there about an hour after my first insulin shot, despite hysterical nurses in the clinic wanting to hospitalise me there and then. (Don't actually blame them, with an Hba1c of 109, fasting bloods of 20, ketones at 5.4 and weight having steadily gone down) however, having impeccable proof with me that it had been like that for a while, well the blood sugars at least - that was my first ever ketone reading, and I, um, didn't actually feel unwell, the consultant let me out with a million and one promises of what to do over the next week and when to present myself at A & E if need be..

However, I was just about to go on half term, so got a week or so to get my head around it all and have various plans in places for me being around a lot of power tools with 16 - 25 year old students with an interesting array of disabilities. They just see diabetes as my "thing" and don't bat an eyelid at anything I may do. They watch out for that they call my "meds" bag, know where my hypo treatments are, who to call over to deal with me if need be, and if I'm being dafter than usual will instruct me to test my blood sugars.

My immediate colleagues were all fantastic, and watch out for me carefully. HR and line managers, I think, concluded I was more than capable of dealing with it, and didn't really seem interested, partly because I'd had a lot of training prior to this for supporting students with T1. Plus, I'd had two and a half years of being treated as a mis-diagnosed T2, and had been suspecting this was the case for a good six months, so I'd probably had less of a shock than most people. In fact, with both my diagnosis, whilst I think about it, I had hysterical medical teams not understanding why I was still on my feet, and I didn't really realise how ill I'd been feeling until I wasn't feeling ill again.

I certainly didn't hypo for the first month or so, due to the fixed doses I was on which was about getting the levels right, and have been lucky enough to only have mild easily treatable ones ever since. Well, apart from the experimental "Let's see if I've got this right for chips" mishap... (The can of coke did need using before it went out of date.)

 

[Lowcarb 2]

Morning all. I was diagnosed last week with type 1 aged 42 and am a complete mess. Apparently I was very unwell but my friend is a diabetic nurse and she called it-even though the GP said it was type 2. 3 days in and out of hospital with BG and ketones going through the roof and bam! Here’s your insulin for the rest of your life. My Hb1ac was 111, BG 24 and ketones near 3 and I’d lost 10 kgs, how on earth the GP thought type 2 beats me.

I had breast cancer 3 years ago and my, that was a walk in the park compared to how I’m feeling now, emotions all over the place and also jittery due to thyroid going into overdrive.

I’m desperate to talk to people who have been diagnosed at this stage in life-anyone i know with type 1 have had it from childhood and have had years to get used to it.

Right now it’s all a bit overwhelming.

Edited by Mod

Hi in 2016 aged 53 i was diagnosed with type 2 over the last two years things have changed quite a bit started off with on medication which was changed time and time again over the first year and then the end of last year ended up in hospital due to constant high levels now on insulin and recently had cpetic blood test to see if I may actually be type 1 awaiting results
Couldn't take it all in to begin with and attended some courses which gave me some guidance and reassurance my biggest question why me, doesn't run in family, not particularly over weight and not of any ethic minority, the only thing they thought it might be contacted to was me having infectious hepatitis as a child therefore making me prone to other immune illnesses

 

[Circuspony]

@Japes I also went back to work quickly. A&E couldn't believe I was still standing but they had no beds on the wards so after pumping me with saline and insulin sent me home at 3am. Outpatient appointment the next day then in work once I'd got my insulin.

Probably a good thing because we were busy at work so it distracted me from everything that had happened.

 

[Notorious]

I was diagnosed at almost 32. It was a shock but not entirely unexpected as late onset type 1 is something of a family curse and I'd had a clue that some of my symptoms could point to that. My GP called it correctly straight away and I spent the night in hospital having my bg stabilised.

Even though I had some idea it was coming, it was still like a bomb going off in my life. It was only 2 weeks till my wedding and then honeymoon so I had to get to grips with management quite quickly.

It's now 12 years on and is still very hard some days, but I feel glad I had my childhood and my twenties to behave exactly as I wanted and it didn't happen until I was mature enough to deal with it and not go into denial.

Whatever you think of her politics, Theresa May has LADA and she's in the top job... For now! :

 

[Jane1980]

Morning all. I was diagnosed last week with type 1 aged 42 and am a complete mess. Apparently I was very unwell but my friend is a diabetic nurse and she called it-even though the GP said it was type 2. 3 days in and out of hospital with BG and ketones going through the roof and bam! Here’s your insulin for the rest of your life. My Hb1ac was 111, BG 24 and ketones near 3 and I’d lost 10 kgs, how on earth the GP thought type 2 beats me.

I had breast cancer 3 years ago and my, that was a walk in the park compared to how I’m feeling now, emotions all over the place and also jittery due to thyroid going into overdrive.

I’m desperate to talk to people who have been diagnosed at this stage in life-anyone i know with type 1 have had it from childhood and have had years to get used to it.

Right now it’s all a bit overwhelming.

Edited by Mod

Tell me about it, 15 months ago they told me I had type 2, year later long stormy short blood tests left right and centre and a hc1 thing result of 121 I have type 1 when blood results came back.... great..... I’m only on 2 units of nova rapid after every meal, is that right for new to type 1? And 15 units of slow acting insulin? Be great to hear how everyone stared on insulin please?

 

[LyndsayM]

Tell me about it, 15 months ago they told me I had type 2, year later long stormy short blood tests left right and centre and a hc1 thing result of 121 I have type 1 when blood results came back.... great..... I’m only on 2 units of nova rapid after every meal, is that right for new to type 1? And 15 units of slow acting insulin? Be great to hear how everyone stared on insulin please?

I’m currently carb counting and correcting. They had started me with 2 Bolus with every meal plus the Levemir but it wasn’t working so my Levemir has been increasing, and I’m doing corrective with every meal on top of the Novorapid. But I’m sure it’s different with everyone.

 

[Colin Crowhurst]

i was DX'd type 1 in Dec 18, at the age of 51, feel free to ask me publically or privately whatever you want, if I can help I would be glad to!

 

[Pixievanderbilt]

Morning all. I was diagnosed last week with type 1 aged 42 and am a complete mess. Apparently I was very unwell but my friend is a diabetic nurse and she called it-even though the GP said it was type 2. 3 days in and out of hospital with BG and ketones going through the roof and bam! Here’s your insulin for the rest of your life. My Hb1ac was 111, BG 24 and ketones near 3 and I’d lost 10 kgs, how on earth the GP thought type 2 beats me.

I had breast cancer 3 years ago and my, that was a walk in the park compared to how I’m feeling now, emotions all over the place and also jittery due to thyroid going into overdrive.

I’m desperate to talk to people who have been diagnosed at this stage in life-anyone i know with type 1 have had it from childhood and have had years to get used to it.

Right now it’s all a bit overwhelming.

Edited by Mod

I am newly diagnosed as a type 1 at age 48. My mother was diagnosed a type 1 in her 50s. I grew up with a brother diagnosed at age 5. I thought I had dodged the bullet because I had made it this far. When I was diagnosed 4 months ago, I was hospitalized with ketoacidosis. My children found me on the kitchen floor barely able to breathe or stand on my own. When I was told I had diabetes 3 things went through my mind 1. That makes sense since my brother and mother have it. 2. Ok, that is treatable. I know this because my brother has lived with it for 50 years. And 3. At my age I wont have to deal with it for 50 years like my brother.

I suppose I am just trying to show you how I didn't let the diagnoses get me down. At first I was on way too much insulin. I told my boyfriend if it doesn't get better in a month I refuse to live feeling this way. Well now that I'm on a proper insulin dose it's much better. It gets better. Hang in there. Sometimes it sucks, but most of the time you forget you are diabetic until it is time to eat. Just take it slow and you will learn how much exercise you can do and how much is too much or too little food or insulin. It is a pain, but manageable and definitely not the end of the world. I wish you luck.

 

[Mad76]

Hi
Very similar stpry to.your. misdiagnosed as type 2
Became very ill quite soon after. Rushed to hospital in ketoacidosis. Diagnosed as type 1.
This was 6 weeks ago . Age 42

Shock of my life.
Still trying yo get my head round it

 

[LyndsayM]

Hi
Very similar stpry to.your. misdiagnosed as type 2
Became very ill quite soon after. Rushed to hospital in ketoacidosis. Diagnosed as type 1.
This was 6 weeks ago . Age 42

Shock of my life.
Still trying yo get my head round it

We can be type 1 twins!

 

[Mad76]

We can be type 1 twins!

Yeah, ive been lurking here and asking lots of questions. Theyre very knowledgeable ...but im quite nervous about doing things without asking doc or nurse first. DO NOT want to risk a repeat of that awful DKA @