• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

Hi, I've been diagnosed as T1 at 27.

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
L

Late to the Party

New Member
Relationship to Diabetes
Type 1
I don't know anyone else in a similar position; Diabetics I know were diagnosed at a young age and their parents dealt with it first until it became normal to them. I was sick for over a year before we realised why and don't know anyone else who had a similar experience either. I've lost my low symptoms 5 months after being diagnosed and my team don't know why but it means I have been told to run my sugars higher to avoid hypos. My work have put me on sick leave for six weeks because of this and cancelled a course I was due to attend. I also know no one who has had an experience like this. Any help anyone can give or advice you have would be beyond appreciated. Thanks.
 
Welcome to the forum.
There will be folks along with more directly relevant experience who can advise and reassure you soon I’m sure but I just wanted to say hello and welcome.
 
Welcome to the forum! There are quite a few of us on here who we’re diagnosed with Type 1 at fairly advanced ages, (not as children, anyway!) I was 51! I think it’s becoming more and more recognised that Type 1 can develop at any age. Because of my age at diagnosis, my GP assumed I was Type 2, but fortunately she realised I wasn't fitting the normal pattern, and referred me to the hospital clinic.
I can’t really help with why you have lost hypo awareness so quickly, this is often something that happens if people have been running their levels too tightly, and having too many hypos. The good news is, that people often do recover their hypo awareness after a period of running their blood glucose slightly higher.
 
Welcome @Late to the Party 🙂 I don’t remember the precise figures but more people are diagnosed with Type 1 as adults than as children, so you’re not alone. The oldest person diagnosed with Type 1 was in their 90s!

Regarding your hypo unawareness, hopefully you can get that back by running a little higher for a while. It usually happens because a person has had too many lows and so their body becomes used to them almost and they seem normal. If you consistently run higher and scrupulously avoid dropping then you have a good chance of getting them back.
 
Robin said:
Welcome to the forum! There are quite a few of us on here who we’re diagnosed with Type 1 at fairly advanced ages, (not as children, anyway!) I was 51! I think it’s becoming more and more recognised that Type 1 can develop at any age. Because of my age at diagnosis, my GP assumed I was Type 2, but fortunately she realised I wasn't fitting the normal pattern, and referred me to the hospital clinic.
I can’t really help with why you have lost hypo awareness so quickly, this is often something that happens if people have been running their levels too tightly, and having too many hypos. The good news is, that people often do recover their hypo awareness after a period of running their blood glucose slightly higher.
Click to expand...
Hi Robin
Robin said:
Welcome to the forum! There are quite a few of us on here who we’re diagnosed with Type 1 at fairly advanced ages, (not as children, anyway!) I was 51! I think it’s becoming more and more recognised that Type 1 can develop at any age. Because of my age at diagnosis, my GP assumed I was Type 2, but fortunately she realised I wasn't fitting the normal pattern, and referred me to the hospital clinic.
I can’t really help with why you have lost hypo awareness so quickly, this is often something that happens if people have been running their levels too tightly, and having too many hypos. The good news is, that people often do recover their hypo awareness after a period of running their blood glucose slightly higher.
Click to expand...
Hi Robin, thanks so much for replying. I think my age got in the way of diagnosis because they didn't consider T1 or T2 although now I know what the symptoms are, it seems so obvious!
Thanks for reassuring me about the hypo unawareness, it feels a little scary at the minute because my diabetic team said I was managing my sugars well since diagnosis so they don't know why it's happening either! It's really good to hear I can get it back if I stick to avoiding lows though. It'll help me battle through the tiredness from my high sugars!

Thank you
 
Inka said:
Welcome @Late to the Party 🙂 I don’t remember the precise figures but more people are diagnosed with Type 1 as adults than as children, so you’re not alone. The oldest person diagnosed with Type 1 was in their 90s!

Regarding your hypo unawareness, hopefully you can get that back by running a little higher for a while. It usually happens because a person has had too many lows and so their body becomes used to them almost and they seem normal. If you consistently run higher and scrupulously avoid dropping then you have a good chance of getting them back.
Click to expand...
Hi Inka,

That's really interesting! I only know Type 1's diagnosed 13 and below so they all seem so used to it! Bit of a shock at 90!

Thank you for reassuring me about the hypo unawareness. I didn't think I was having too many lows since my diagnosis but who knows? It's all so new! I'll definitely keep going with running higher then, they're reviewing it at the end of February.

Thank you
 
You hadn't met me though had you? - diagnosed aged 22, having been married 15/16 months and only the second time I'd needed to see anyone at our new doctor's surgery since we'd moved into our new home the previous year. Took them about 20 minutes to tell me they reckoned it was T1 and make the phonecall to arrange to admit me to hospital the following morning plus give me a letter to take with me.

That was 50years ago and not considered out of the ordinary then either.
 
Hi and welcome from me too.... another late starter at 55. 3 years down the line now and feel fitter and healthier than I have in 20 years, so it hasn't been all bad.

Do you have Freestyle Libre 2 to help you manage your levels and warn you about them dropping? If not, you should ask about it.... If you are not aware, it is the sensor system which is adhered to your arm and alerts you when your levels are going low or high.

As regards your loss of hypo awareness, what sort of level do you realise you are hypo or have you passed out? I know my hypo symptoms have changed from when I was first diagnosed so I wonder if you are not recognising them because they are different. I go low rather more frequently that I should but I have pretty good awareness even during the night. When you say you are running your levels higher and that is making you tired.... what sort of levels?
Just trying to get an understanding of your situation with regard to hypos.

Also curious as to which insulins you use and wonder if it might be a particular insulin dropping you too fast for your body to respond in time.
I follow a low carb way of eating so my insulin doses are always relatively small and my hypos pretty well always mild as a result so I get plenty of time to react. I wonder if that approach might be helpful to you if running your levels higher doesn't help improve your awareness.
Do you know if it was basal or bolus insulin causing the hypos or both or perhaps your own insulin production kicking in and causing the problems, as I imagine you may still be in your honeymoon period?
 
Hello @Late to the Party and welcome.

I was dx aged 41 in 2008. My GP was really on the ball - Type 1 and an immediate referral to A&E. Sorry you had to join our little club.
 
Best way to restore hypo awareness is to run bg levels higher for while, ask diabetes team for libre 2 on prescription & set low bg alarm for somewhere above 5, that should reset things..
 
Welcome to the forum. I was diagnosed as a young adult at the age of 19.

Firstly it is a bit of a shock to our system, we now know a life before diabetes and now with Type 1 Diabetes.
I suggest research, and find out lots of helpful advice from duk and peer support.

It may seem tough, but you'll soon know how to manage it to the best that you/we can.

Any questions ask away 🙂
 
Hi from another late starter. I’d second the advice to ask for Libre 2 sensors which have alarms that can be set at any level to warn you of an incipient hypo. Mine is set at 4.2 and when it goes off I can take action to avoid the hypo e.g. take a couple of glucose tablets and eat a biscuit. Meantime it would help if you could answer the questions already asked so we can offer helpful suggestions.
 
Welcome to the forum @Late to the Party

I was diagnosed at 21, and my understanding is that at least as many people are diagnosed with T1 in adulthood as those who are diagnosed as children. I think there are a couple of ‘hotspots’ around 7-8, 13-16, and again 20-25, but yes, sadly many HCPs seem unaware that T1 is something that can and does happen at any age.

Personally I think it is the avoidance of lows that helps reset the ‘glucose thermostat’ rather than specifically running high. Generally averaging higher numbers can help give you more ’wiggle room’, but be careful you don’t just end up with bigger swings from higher numbers down into just as many hypos.

Some T2 members arrive on the forum who have been living with consistently high BGs for a while who can get quite strong hypo symptoms when their BG approaches a healthy range (sometimes called ‘false hypos’), so the level at which the body triggers warning signs can certainly change, but as I understand it it’s the consistency of the ‘bottom’ numbers that’s important. Giving yourself a floor below which you don’t go.

I currently treat any reading in the 4s as if it were a mild hypo, and have my CGM/Libre2 alerts at 4.9 to give me a decent amount of time to keep above 4.0.
 
Hi @Late to the Party ! Welcome to the forum! I was diagnosed in May, age 37. I also didn't know it could develop after about 21! Not sure how long I was sick for before I was diagnosed, really, probably a few months then it got really bad and I was taken to hospital in an ambulance. I don't remember a thing...

Give yourself time to adjust to it mentally as well as physically. I was signed off work for a month once I came out of hospital. I went through a very hard few months with it - I felt so physically weak and I really struggled mentally - but I started to turn a corner in October, and I feel 100% better than I did now.

People will say it's a marathon, not a sprint - I'm still learning that - and if they're anything like mine, your healthcare team will probably parrot that you will live a normal life. I don't deny that we can, but I also think it's quite dismissive when we've just been diagnosed with a lifelong chronic condition! Don't worry if you don't feel normal for a while...you'll probably go through something of a grieving process - THAT'S normal!

Can't offer any advice on the hypo awareness, but looks like the more experienced members have done that 🙂
 
Well a normal life is actually beleagured with all sorts of pros and cons whether you have diabetes or not.

For starters being born female is a bit of a con - my big sis said to me when we were both in our 30s and whinging about 'hormonal problems', 'Let's face it Jen - if men had periods - they'd have found a cure by now!' Then perhaps you have children - they restrict you anyway and can so easily be PITAs as well as being brilliant fun at other times. Perhaps other family members cause probs, perhaps you have money worries, perhaps your boss at work is too demanding?

So - establish your new routine of when to test, when to jab, eat, exercise. Learn to treat your diabetes with a bit of respect - ie toe the line a bit with it - and that way, grow together so that your diabetes fits in with you, least it can do once you've continued to show it you can do what it needs, surely! - rather than you having to fit in with it.

You can honestly get to a stage where you are at peace with each other and can cohabit comfortably - but all this of course, takes time. No rush - after all - you have the rest of your life to do it! 🙂
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top