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Newly diagnosed Type 1 at the age of 49 approaching 50

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

Jane Sowerby

New Member
Relationship to Diabetes
Type 1
Hi, I was diagnosed as type 1 last Friday morning and spent most of the day in various different appointments. It was a big shock and very overwhelming. However, I have a very supportive husband and a great team of diabetes nurses to turn to. I have read a couple of the posts on here and I am very relieved to read that other people have experienced the same initial emotions as me. I am quite scared, but I am trying to remain positive. There is no family history of diabetes and I was not over weight, I have lost weight without trying and now need to try and stop losing weight.
 
Hi Jane, welcome to the forum 🙂 How did the diagnosis come about? I was in exactly the same place as you in June 2008 - 49 years old, no history of diabetes in the family and I was due to run a marathon a week later 😱 Instead I eneded up spending 8 days in hospital and trying to get to grips with my 'new normal'.

It is a huge shock, particularly since Type 1 often comes right out of the blue and instantly requires a whole new way of thinking about food, having to learn about insulin and blood sugar levels, and to a much larger extent, understanding how the body reacts to and processes the food you eat - something I certainly took very much for granted prior to diagnosis!

The first thing I would recommend is getting a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas. Don't be misled by the title - this book is relevant to people of all ages, and covers all aspects of living with Type 1 diabetes. It will help you understand things, inform you of things to look out for, and perhaps also prompt questions for your team about how you need to handle certain situations. There is a very steep learning curve, but do try and take things at your own pace - beyond a few necessary things, you don't need to everything from Day 1. Much of what I have learned over the ensuing 8 years has been through experience, learning how to handle new situations or new foods, and have managed to refine my control so that I now feel perfectly at ease most of the time, with just the occasional hiccough! 🙂

I lost a huge amount of weight prior to diagnosis, but now your body is receiving the insulin it lacked it will be able to use your food properly and you should start to see the weight come back on again. It can take a while, so don't stress about it, patience is the key 🙂 I'm now a very healthy weight which barely fluctuates, and I am back running, so whatever you liked to do before, there is a way to continue and you shouldn't need to give up your pastimes or pleasures 🙂

What insulin regime are you on, and how are you managing? It's good to hear that you have support from your family and a good healthcare team behind you 🙂 Please feel free to ask any and every question you may have - someone here is bound to be able to give you an answer or at the very least some guidance and support 🙂
 
Hello Jane, Welcome to the club that no one wants to join and to this very supportive forum. A lot of our T1 members just like you have , join this select club when adults. Itmust have come as a shock to you. T1 is nothing to do with being overweight or leading an unhealthy lifestyle. It's you're immune system thinking certain perfectly normal healthy cells in your pancreas are aliens.
Feel free to ask questions, we'll do our best to help based on our win experiences.
 
Hi Jane, and welcome from another 'late developer' , I was 51 at diagnosis. Good that you've got a positive diagnosis and a good team behind you, so many of us are misdiagnosed as Type 2 to begin with, despite all the signs pointing to Type 1, as many GPs don't think anyone our age can develop Type 1. I too had lost an awful lot of weight, (despite eating enormously,) but put it back as soon as my body was able to use the fuel I was putting in to it again. My weight has now been stable ever since.
 
Hi Jane, sorry about your diagnosis. I'm the same age as you, not diabetic (yet!) but my son was diagnosed type 1 aged 4 - no other type 1's in the family so it came totally out of the blue, but there are lots of other autoimmune conditions in our family, so the genetic predisposition is there.

Give yourself time, it's a massive upheaval and a steep learning curve, but ultimately all doable. I definitely recommend the Ragnar Hanas book that @Northerner mentioned. 🙂
 
Hi Jane, I was diagnosed T1 in August at the grand age of 46. To say it came as a shock is an understatement! My grandfather was diagnosed T1 at roughly the same age as me, and it skipped a generation as neither my dad or uncle had it. Its a steep learning curve and lots to take in, you will get there in time 🙂
 
Welcome
 
Jane Sowerby said:
Hi, I was diagnosed as type 1 last Friday morning and spent most of the day in various different appointments. It was a big shock and very overwhelming. However, I have a very supportive husband and a great team of diabetes nurses to turn to. I have read a couple of the posts on here and I am very relieved to read that other people have experienced the same initial emotions as me. I am quite scared, but I am trying to remain positive. There is no family history of diabetes and I was not over weight, I have lost weight without trying and now need to try and stop losing weight.
Click to expand...
Hi Jane .
Warm welcome to the forum
 
Welcome from another late developer ☺, I was 42 at diagnosis and like the others, had lost a lot of weight. It is a huge shock and lots of learning and adjustment. This is a great place to chat to others who know what you are going through. Are there any courses for type 1s in your area? Once things have settled down a bit, I do recommend you find out. I was lucky enough to do a DAFNE course, which was a huge help and also meant I got to meet other local type 1s. We still meet up in the pub every month.
 
Hi Jane

Welcome from yet another late starter, having been diagnosed at 53. As you say a shock, lots to learn and do right from the start. It does get easier and becomes part of a new normal. Things take time to settle at the beginning so be patient with yourself. It sounds as if you have a good team to turn to and they help you to sort things out step by step.

There are lots of people on here who are very helpful and encouraging so do not be afraid to ask any questions.
 
I'll just say Hi - and recommend you read the following Link http://www.businessballs.com/elisabeth_kubler_ross_five_stages_of_grief.htm

It isn't directly diabetes related, but fits what we ALWAYS go through when first diagnosed, it's immensely appropriate and you'd think it was written precisely with this in mind.

Hope it helps! - because honestly - it does get better, but takes time.
 
Thank you to everyone who has taken the time to welcome me and offer words of support. I will defenitely get a copy of the book everyone has mentioned and I will investigate local groups / courses.
 
Northerner said:
Hi Jane, welcome to the forum 🙂 How did the diagnosis come about? I was in exactly the same place as you in June 2008 - 49 years old, no history of diabetes in the family and I was due to run a marathon a week later 😱 Instead I eneded up spending 8 days in hospital and trying to get to grips with my 'new normal'.

It is a huge shock, particularly since Type 1 often comes right out of the blue and instantly requires a whole new way of thinking about food, having to learn about insulin and blood sugar levels, and to a much larger extent, understanding how the body reacts to and processes the food you eat - something I certainly took very much for granted prior to diagnosis!

The first thing I would recommend is getting a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas. Don't be misled by the title - this book is relevant to people of all ages, and covers all aspects of living with Type 1 diabetes. It will help you understand things, inform you of things to look out for, and perhaps also prompt questions for your team about how you need to handle certain situations. There is a very steep learning curve, but do try and take things at your own pace - beyond a few necessary things, you don't need to everything from Day 1. Much of what I have learned over the ensuing 8 years has been through experience, learning how to handle new situations or new foods, and have managed to refine my control so that I now feel perfectly at ease most of the time, with just the occasional hiccough! 🙂

I lost a huge amount of weight prior to diagnosis, but now your body is receiving the insulin it lacked it will be able to use your food properly and you should start to see the weight come back on again. It can take a while, so don't stress about it, patience is the key 🙂 I'm now a very healthy weight which barely fluctuates, and I am back running, so whatever you liked to do before, there is a way to continue and you shouldn't need to give up your pastimes or pleasures 🙂

What insulin regime are you on, and how are you managing? It's good to hear that you have support from your family and a good healthcare team behind you 🙂 Please feel free to ask any and every question you may have - someone here is bound to be able to give you an answer or at the very least some guidance and support 🙂
Click to expand...

Hi,

Thanks for your response, my husband and I had pretty much self diagnosed. I started losing weight before Christmas and didn't put any on over the festive season. I started to get an incredible thurst and weeing for England. I had a vasovagal feint whilst on the loo at 4am one morning and smashed my head so hard we decided to go to A&E to get it checked out. No damage, just concussion. Anyway, I was still feeling ill after several days and my check for underactive tyroid levels was coming up so I decided to go the docs. The GP ordered full bloods which showed by glucose level at 17.4. She started me straight on Metformin. I was due to see the diabetis nurse the next day at 4.30pm but got a call that morning to say that they wanted to see me at 10am and it all escalated from there. My levels were up to 25.9 so I got sent off to the hospital where they started me straight on insulin. I am taking slow release Humulin twice a day at the moment but this is likely to change. For me, the biggest thing is not being able to exercise, although, I know I will get back into this as soon as my levels are sorted and I understand how to manage the insulin and the other thing is not being able to have a social glass of wine or G&T. Again, I understand I will be able to return to this once my levels are sorted.

This looks like a great forum, I am looking forward to learning from people who have already been there.
 
Jane Sowerby said:
Hi,

Thanks for your response, my husband and I had pretty much self diagnosed. I started losing weight before Christmas and didn't put any on over the festive season. I started to get an incredible thurst and weeing for England. I had a vasovagal feint whilst on the loo at 4am one morning and smashed my head so hard we decided to go to A&E to get it checked out. No damage, just concussion. Anyway, I was still feeling ill after several days and my check for underactive tyroid levels was coming up so I decided to go the docs. The GP ordered full bloods which showed by glucose level at 17.4. She started me straight on Metformin. I was due to see the diabetis nurse the next day at 4.30pm but got a call that morning to say that they wanted to see me at 10am and it all escalated from there. My levels were up to 25.9 so I got sent off to the hospital where they started me straight on insulin. I am taking slow release Humulin twice a day at the moment but this is likely to change. For me, the biggest thing is not being able to exercise, although, I know I will get back into this as soon as my levels are sorted and I understand how to manage the insulin and the other thing is not being able to have a social glass of wine or G&T. Again, I understand I will be able to return to this once my levels are sorted.

This looks like a great forum, I am looking forward to learning from people who have already been there.
Click to expand...
Not a great introduction, but at least things did move fairly quickly when it was recognised you weren't typical of Type 2 🙂 I look back on my symptoms and can't believe I ignored them for so long (with hindsight, about 18 months prior to my diagnosis) - I mean, it's not normal to drink 40 pints of milk a week, is it? 😱 My blood sugar level was 38 mmol/l at diagnosis 😱

When will you get your insulin reviewed? How are your levels doing now? I was fortunate to be started on MDI (Multiple Daily Injections), also called 'basal/bolus' - the basal insulin is a slow-acting insulin, once or twice a day and the bolus is a fast-acting insulin taken when you eat, and you can match the doses to the food you wish to eat. This is the most flexible insulin regime, so I would make sure you get to discuss this at your appointment. For me, it meant that I was able to get back into my running fairly quickly, and in fact I managed to run the Great South Run four months after diagnosis. Slow and tricky to start with, but gained experience quickly and the insulin regime was helpful to because it was relatively easy to adjust my doses - if you are offered twice a day mixed insulin my recommendation would be to reject it immediately, it's only really suitable for a limited number of people.

The thing about Type 1 diabetes is that you do have to do a bit of planning, so it can take away the spontaneity of doing things sometimes, and you do have to 'be prepared', but it does become habitual after a while 🙂 I actually think I am healthier now in many ways than I might otherwise have been because I have learned so much about my health and how my body works, and I have a very good reason for looking after myself 🙂 Plus, we get all our prescriptions free and regular health checks that muggles may not get 🙂
 
You certainly will be able to drink alcohol again Jane, with suitable caveats - the usual ones about responsible drinking LOL - plus what nobody NOT diabetic understands - that alcohol cause your BG to drop (so what? yawn) BUT!!! your liver is so busy processing the alcohol (it gives this job priority over any thing else) so your BG can drop down to really dangerous levels (comatose) before Mr L says, Oh - better pump a bit of Glucagon into the bloodstream (which increases the BG PDQ) to help us out. So you need to make sure that your levels are maintained with snacks and test before bed.

You'll just have to experiment to find your own safe limit. I really hope it's not too long to wait - cos I really DO believe in personally checking my own tolerance as often as necessary!
 
Welcome to the forum and I was even older at 58 when I was diagnosed and no one in my family have any history of type one. I remember the shock and fear and how alone I was with it all. I am glad you have a supportive husband and a great team. This forum is very supportive and has helped me immensely. I now am healthier than ever, have gone back to a good weight and exercise as much as I want.
 
Hello Jane, welcome to the forum. 🙂
 
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