Newly diagnosed and reeling

Hi Lyndsay and welcome to the forum. So sorry to hear about your recent diagnosis and all credit to your friend. I’m Type 2 but I will tag in some type 1 moderators who will be able to help you @Juicyj @Diakat @Jaylee @urbanracer

Hello @LyndsayM

Sorry to hear of your diagnosis, your story sounds similar to mine, I felt very overwhelmed at diagnosis over 7 years ago now and couldn't stop crying, it was a great shock.

Firstly remember your body has been through an awful lot, and with running high blood glucose levels you're going to be feeling unwell, so please be kind to yourself and take it slowly, get some fresh air, go for a walk and breathe.

Yes the diagnosis is a big shock but you will come through this and everything will be ok, you are starting a new chapter of your life in getting used to insulin and checking your glucose levels so when you're ready get a copy of 'Think like a pancreas' which is a great read written by a type 1, knowledge is power in managing type 1, talk to those around you and here too, you need support so don't be afraid to ask questions no matter how trivial, and remember how you're feeling now is temporary and will pass, best wishes J

LyndsayM said:

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 god 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.

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I got hit with it at 54 although I had a series of minor complaints which mostly improved when I started insulin and got my blood sugars under control.

It is a lot to take in and I too remember being sent away from the hospital with a couple of insulin pens and very little else - " off you go then"!

Things got easier after I found these forums and the helpful people who post here. Don't be afraid to ask questions and have a look at the information pages on the front end of the website, there's some really good stuff in there. Participating in forums is a great way to learn about diabetes management so you've come to the right place.

T1's usually get fairly good treatment from the NHS with regular monitoring from both the GP's diabetes nurses and from the Endocrinology Department at your local hospital, although there are exceptions depending on where you live.

Stick with us, we've got your back.

Diagnosed at 43! Also in and out of the GP while they insisted I was T2. I barely had any fat on me by that time too and it was Dr Google who convinced me that were wrong. Like you, extremely ill by the time I got to A&E

2 years in and it is an annoying but routine part of life. When I was first given insulin the nurse said I would start to feel better. I actually spent 3 months feeling awful. One of the consultants told me it was a sugar detox. Effectively our bodies have been running at high sugar levels for so long that bringing them down is like going cold turkey on a drug.

So be kind to yourself for these first few weeks. Expect to feel all over the place emotionally, tired and likely with blurry vision. Take time to understand how different foods affect you and you'll soon work out what's easy and what's a bit more challenging (pasta!)

And keep posting on here - it'll keep you sane when well meaning friends ask if you've seen the daily mail article on reversing diabetes and you're trying to explain for the 100th time that you've got the other type......

LyndsayM said:

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 god 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.

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Hi @LyndsayM ,

Welcome to the forum.

I was hit by this as a kid, at the beginning of the summer break. (Hospitalised for a week diagnosed by a Nurse friend of my mums.)
So I'm probably the last person with advice on adjustments for work.

As life trucks on, there will always be adjustments & tweaks to the regime with regards to an ever changing lifestyle & work pattern.
I'm headbutting 51. Changed jobs more times than my socks.

Feel free to just ask. There's always someone rowing a simalar "boat."

But I wish you well.!

Hi @LyndsayM There isn't a right or wrong answer to your work question, you should return to work when you feel fit enough to do so, otherwise it may put you under too much pressure attempting to return when you're not ready.

Your employer has to make reasonable adjustments for you under the Equality Act 2010 so giving you breaks for testing and being able to manage your condition in the workplace, it's a good idea to chat to your line manager when you return or HR depending on the structure to brief them on your situation and make them aware, there's some information here to help you understand more: https://www.diabetes.org.uk/resources-s3/migration/pdf/Employment-advocacy-pack-2013.pdf

Deep breaths, @LyndsayM , deep breaths!

I was dx'd at 21, thought my life was over, but after a few months, when the initial shock had passed, and I'd learned more about how insulin worked, things just started to become normal again.

Realising in stages how I could still do the sports I used to do, and wouldn't have to change my diet that much were big steps on the road to acceptance.

It's not a walk in the park - there will be frustrating times when it just does unpredictable things, and hypos can be unpleasant but are easily sorted with some glucose (sensing devices called cgm mitigate hypo difficulties a lot - you can see bg moving around on a graph and "steer" it with insulin and food).

But, overall, it is manageable. Yesterday, I went out for a Chinese buffet, had a walk round town, then popped into my local for a few beers. Normal, normal, normal. I just had to think about how much insulin to take and when.

Try not to think about it in terms of 'fairness" - it's biology and biology doesn't do fair.

Also, try not to be overwhelmed by the fear of complications. Newly dx'd can tend to focus on this too much. There are never any guarantees about complications, but the evidence shows that the numbers experiencing severe complications are very small, literally about 1%, and it tends to be people who have played fast and loose with it in their teens, twenties and thirties. Provided you make a decent effort to stay in range most of the time, the odds are in your favour.

Good luck!

Hi Lindsey,
Welcome to the forum
Sorry to hear about your diagnosis
Hope you become more stable very soon
Don't feel guilty about not been at work.
Take care

Hi Lindsay

Welcome to the forum. I was diagnosed with T1 in January this year.

Take one day at a time and take time to adjust.

Use the forum to get answers to all your questions

Hi @LyndsayM
Late to the party (thanks for tag @Rachox)
Work might depend a bit on what you do. Desk job with simple journey in - less of a problem than bus/train dash followed by all day climbing things.
Ultimately it is about how you feel. Are you ready?
Diagnosis is hard mentally as well as physically, but life moves on and diabetes becomes art of the routine to juggle.

LyndsayM said:

Thank you for your replies. I’m worried about work too as this is now my second week off. I’m not brave enough to go in yet, as I haven’t had a hypo yet and so have no idea how that will feel.

Were you working when diagnosed and what time off did you take?

My friend had said that normally people get diagnosed after becoming unwell and ending up in hospital for a week, so I should kind of work on that basis - at least two weeks off work while we get my levels down. I think I’ve been below 10 twice since last Wednesday and am averaging 14. So much for the honeymoon period!

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Hiya, when I was initially diagnosed back in November I had 2 weeks signed off of work. During that time I felt awful as my initial hba1c was 103 and I was trying to get my levels down (at that stage only with metformin which clearly didn't work!), followed by another week off as I had exams (I know, terrible timing!). I used my time off, not just for revising, but also trying to get active to try to reduce my glucose levels and I also enjoyed the exercise if I am frank!

When I returned to work I had the usual back to work interview and discussed with my manager what reasonable adjustments I needed - i.e. being able to check my levels, eating at my desk, being able to walk around when I felt high etc. My work even had me discuss my condition with one of the health and safety team.

I also was completely honest with my colleagues about my condition and how it may effect me and explained that if I was away from my desk, it doesn't mean I am skiving, it could just be that I am trying to sort out my levels. My colleagues were all really nice about it and inquisitive.

Best of luck with everything

Hi and welcome to a fairly exclusive club that one of us wanted to join. I was diagnosed at 23, and am just a little older than you now. It came completely out of the blue for me, following a nasty dose of gastric flu - and in its enthusiasm to kill the virus, my immune system napalmed my pancreas as well. I went to the doctor for a sick note and came out with diabetes. At the time I was working long and irregular hours as a research biochemist, and on a very rigid fixed dose insulin regime which required set meals, and the two didn’t mix at all, as I couldn’t eat in the lab. So I moved on and became a sales rep for a bit, then an estate agent, then a full time mum with a side order of freelance photography, then I started silversmithing, I’m currently a science teacher and about to start training to become a paramedic. So once you get the hang of looking after it, you can do pretty much any job you like, especially with the modern insulins, carb counting systems and monitoring methods we have now. You’ll be feeling rough right now as your body adjusts from being so ill, which will make the mental burden seem even heavier. It will become second nature, but you need to be kind to yourself and take a little time. Perhaps ask HR about a phased return to work, so you can get back to normal over a period of time? What do you do for a job? Do come and join our Type 1 Stars thread, it’s mostly chat about the iOS and down of life without a pancreas but with hot debate on whether to dunk biscuits in a hot drink or of celery is indeed the vegetable of the devil.

Hi and welcome to the forum :-D Like you, I was diagnosed 3 years ago when I was 43. It was a shock in the beginning but once you get used to the routine, It’s not so bad. The condition can be managed and lots of us do quite well. Hope you feel better soon!

LyndsayM said:

I’m on a Breast Cancer Forum where we regularly discuss the benefits of punching people in the face when they suggest that eating dandelions, kale and the like, cures cancer...

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I work in R and D for a company that manufactures radiotherapy equipment, I am amazed at some of the stuff I see on social media about cures for cancer.

You'll have to get used to all the wonder cures for diabetes now also!

Good to hear that your employer is cool, mine couldn't have been less interested in my diagnosis (maybe that's a good thing?)

Hi. Glad to have come through the worst. Mis-diagnosis by GPs of diabetes type is common and many of us rely on Dr Google and this forum to work it out. I suspect 2 weeks off work should be enough. It's important not to think about diabetes as a disability; merely a nuisance that needs some care. You may not yet have been shown how to carb-count the Bolus dose and probably have a fairly low Bolus fixed dose to avoid a hypo. Shortly you should move on to carb-counting where you can gradually get the dosage right and minimise hypo risk and large swings. Frequent testing should avoid a surprise hypo. Once you get the insulins balanced and carb-count, serious hypos should be rare event.