Newly diagnosed T1 at 36

[KevGr]

Hi I have just been diagnosed as T1 at 36. I am a 36 yr old male and had a random health check at work back in november which showed bg of 9, so followed it up at doctors and then hospital. C peptide of 375 so now diagnosed as T1 and due to go to hospital Monday to start insulin. My doctors surgery dignosed me as type 2 from the c peptide and were due to start me on metphormin! Its been a long ****** journey tbh with a total lack of communication from doctors and hospital - I just want to get on with it and start treatment now. Still no symptoms at all, but ive been checking blood glucose around 4 times a day and have always eaten a very healthy diet (5ft 10 and weigh 11stone 7). Im just trying to get over the anger and unfairness of it all at the moment, but im sure that will subside. Anyway...! Any help of advice welcome

 

[Scott-C]

Hi, @KevGr , yes, it is a shock, we've all felt that way at the start but it fades once you get a few of the basic rules of T1 management under your belt.

I went through the, "it's not fair, why me?" stages too, but, at the end of the day, it's just biology, and biology doesn't do "fair".

It might seem very limiting at the moment - your docs might put you on set meals for a while to reduce some of the variables - but that's only for a while, and you'll soon learn that T1s have a lot of leeway with food.

Provided you pay attention to the amount of insulin you take and how you time it, you can go out for a curry, Chinese buffet, three course meal, a few beers at the weekend, just like anyone - I do that sort of stuff often and still keep my levels in check.

It becomes something which you just learn to fit in with your life. A bit of your body has stopped working, so, instead of hating it, try to think of it as something you need to look after, care for (it'll take some time to look at it like that, but it's do-able).

I almost died when I was dx'd, full-on DKA, diabetic ketoacidosis, thought I was going to be some sort of cripple sitting on the sidelines for the rest of my life.

But a few months later, I was standing on my skis in the Scottish Highlands on a sunny spring day surrounded by beautiful scenery, thinking I am so not dead, and the only thing I needed to think about from a T1 point of view was whether I needed 1 or 2 units of insulin for a couple of bacon rolls at lunch.

It's terrifying at the moment, but, believe me, you will find simple ways of dealing with this, and will look back and wonder why you were worrying about it.

Good luck!

 

[KevGr]

Hi, @KevGr , yes, it is a shock, we've all felt that way at the start but it fades once you get a few of the basic rules of T1 management under your belt.

I went through the, "it's not fair, why me?" stages too, but, at the end of the day, it's just biology, and biology doesn't do "fair".

It might seem very limiting at the moment - your docs might put you on set meals for a while to reduce some of the variables - but that's only for a while, and you'll soon learn that T1s have a lot of leeway with food.

Provided you pay attention to the amount of insulin you take and how you time it, you can go out for a curry, Chinese buffet, three course meal, a few beers at the weekend, just like anyone - I do that sort of stuff often and still keep my levels in check.

It becomes something which you just learn to fit in with your life. A bit of your body has stopped working, so, instead of hating it, try to think of it as something you need to look after, care for (it'll take some time to look at it like that, but it's do-able).

I almost died when I was dx'd, full-on DKA, diabetic ketoacidosis, thought I was going to be some sort of cripple sitting on the sidelines for the rest of my life.

But a few months later, I was standing on my skis in the Scottish Highlands on a sunny spring day surrounded by beautiful scenery, thinking I am so not dead, and the only thing I needed to think about from a T1 point of view was whether I needed 1 or 2 units of insulin for a couple of bacon rolls at lunch.

It's terrifying at the moment, but, believe me, you will find simple ways of dealing with this, and will look back and wonder why you were worrying about it.

Good luck!

Thank you for your reply it has really helped. Im just in a world of confusion at the moment.
Checking bg 4-5 times a day and always 6 when i wake up and around 7-9 when i go to bed. Drops to 5 before dinner, so i dont think the readings are too bad but i am really watching what i eat at the moment as not on insulin yet.
The eating part has really got to me as there is temptation all around!!
If anyone can help explain the c peptide a bit more too that would help. It was 375 which is 'lower end of normal'. So am i topping up the insulin its producing? And im guessing that level will decline over the years..?

 

[Knikki]

Hello @KevGr Welcome to the forum.

Not sure about the c peptide results simply because I'm old enough to be classed in the Juvenile Diabetes bit, however doing a quick search did lead me here https://medlineplus.gov/ency/article/003701.htm which hopefully might give you some more in site to what the results mean.

The best way to learn is ask questions, there is usually a T1 lucking about somewhere to help out so don't think anything to silly to ask about.

Good luck.

 

[Robinredbreast]

Hi I have just been diagnosed as T1 at 36. I am a 36 yr old male and had a random health check at work back in november which showed bg of 9, so followed it up at doctors and then hospital. C peptide of 375 so now diagnosed as T1 and due to go to hospital Monday to start insulin. My doctors surgery dignosed me as type 2 from the c peptide and were due to start me on metphormin! Its been a long ****** journey tbh with a total lack of communication from doctors and hospital - I just want to get on with it and start treatment now. Still no symptoms at all, but ive been checking blood glucose around 4 times a day and have always eaten a very healthy diet (5ft 10 and weigh 11stone 7). Im just trying to get over the anger and unfairness of it all at the moment, but im sure that will subside. Anyway...! Any help of advice welcome

Hello and welcome, it is an awful lot to take on board and the reality of type 1, but it will get easier in time and in the meantime you can post questions and also get good advice, help and support from member's.
I was diagnosed age 31, that was 30 years ago, I was very nervous when I did my very first injection in hospital, but it will all fall into place !
Take care

 

[Circuspony]

I was diagnosed 18 months ago aged 43 - I still feel like it's all been a mistake and will go away soon!

Your BG levels aren't bad and with c-peptide at that level you are still producing insulin, so you'll probably be on very low levels to start with. My BG levels were off the scale when I was diagnosed so they got me on insulin pretty quickly.

There's nothing fun about T1 and it's hard work as you learn to live with it, but s*** happens and in the end it just becomes part of your daily routine really.

 

[LooperCat]

Welcome to the club none of us wanted to join, as the others have said it’s a lot to take in. I was diagnosed at 23, and have been living with it for two decades. Sounds like you’re “honeymooning” - still producing a bit of insulin which needs topping up. I’d suggest keeping dextrose tablets on you all the time in case your pancreas gets a bit enthusiastic and chucks out a dollop of insulin. Keep asking questions x

 

[Shellback]

Hi Kev, I was diagnosed almost a year ago to the day also at the tender age of 36. Of course I've felt immense anger and frustration at times. It is a lot to get your head around but as you become more experienced at dealing with it you will start to get your head around it.

It takes a lot of trial and error but if you try some of the ideas in this forum you will begin to discover what works for you. I've found this book useful https://www.amazon.co.uk/Think-Like...&sprefix=think+like+a+pancreas,aps,387&sr=8-1

I'm able to keep my A1C in the normal non diabetic range and still enjoy a few drinks with my wife and friends although one does has to be disciplined and plan carefully. From my perspective exercise even just walking is key.

But since diagnosis i've been able to climb Welsh mountains with my daughter in a carrier. Do some solo kayaking off Anglesey and the Wirral and next week I'm going to Barcelona to meet up with an old Uni friend and enjoy some Tapas and Cervezas. You can't do that with Cancer.

It takes time though mate. I'm a year in and still learning and getting better each day. I have the odd nightmare too.

 

[KevGr]

Thank you for all the replies. Off to bed now with a bg of 5.3! My body must know its D day at the hospital tomorrow!

 

[porl69]

Thank you for all the replies. Off to bed now with a bg of 5.3! My body must know its D day at the hospital tomorrow!

Hi @KevGr how did it go at the hospital?

 

[SueJB]

Hi @KevGr welcome to where you'd rather not be but it's good because everyone is so friendly and so so helpful. Shocking, postively shocking to be told you have T1D...................... I thought that was it but heyho off for a driving tour round Europe. Hope they let me back in. Looking forward to thesbian tales

 

[Gnat]

Hi KevGR,

I was diagnosed T1 at 50, 18 months ago. I travel by myself all over the world for work without lows, ski, drive long distances sometimes, go running and biking still, and have made few changes really. Except that I now make the most of the opportunity to ski and travel and do cool stuff, because diabetes does really suck and you have to find other stuff to make you smile. I embraced the whole thing and became a bit of a diabetes geek - helped by the fact that I have a health background and have access to research papers. My key thing was trying to extend my honeymoon - studies show that people with some c-peptide do a bit better. C-peptide is a marker of how much your pancreas is still working - the higher the number for T1 the better. T2 it is elevated initially as the pancreas is working so hard. With 10-20% of pancreatic function remaining at diagnosis, I think alot about what I can do to keep that going.

Here's the stuff that I have found for myself. Note that these are my thoughts, and learnings based on my experience of one person so it's just to think about, no advice being given here.

Bernstein's book The Diabetes Solution was very helpful, I read and read it. His view is that with a low carb diet and great control the remaining beta cells should still continue to function. I am not so sure about that - he hasn't offered evidence of people in whom that has been the case, and it is an autoimmune disease in which the cells were dying off, so why would that process stop? However, I have been doing low carb and aiming for really good control to maximise this.

The book "Think like a pancreas" is also good, and if you don't want to go the low carb restricted way, will help.

I've read that straining the beta cells leads to beta cell exhaustion and damage. High glucose also damages beta cells. So, to try to get my beta cells surviving as long as possible I added in a little short acting insulin early to cover meals so that I would have as little stress on them as possible and avoid burning them out. I also try to keep my levels low as much as possible. I found not snacking at night (unless too low), or between meals (something I achieve less than I would like) seems to give the beta cells a bit of recovery time and they seem to perform better.

My insulin needs vary at different times of the day and on different days - more is usually needed in the morning with breakfast than later in the day. This seems typical. I eat an egg for breakfast usually and more food for lunch and dinner.

Low carb has been a blessing for great levels and not needing to worry too much about hypos - Bernstein's law of small numbers makes sense.

A small study that wasn't particularly well conducted found that adults with new onset T1 who exercised quite a bit had a honeymoon on average of 28 months vs 7 months for others who did not. I try to get 45 mins or more of exercise every day thinking that will help prolong the honeymoon, plus improve insulin sensitivity, help protect against depression (common in diabetics) and help against heart disease, etc.

Sometimes I jump on the exercycle to get my levels down a bit when they are high rather than correcting with insulin.

Exercise has a different effect for me according to the time of day - 10 min exercycle in the morning does not change my levels at all. At night, even with no insulin on board I will go from 6.5 to 4.5 with 10 mins cycling. The key times I had a hypo was if I had extra insulin to cover a little carbs for a meal then went for a walk - somehow it seemed to really enhance the action of the insulin. So, easier for me to be low carb have only a little insulin, and then I can spontaneously go for a walk or cycle somewhere if I want.

I test compulsively - it really helped me learn a lot about what was happening and how to manage things, including testing before exercise, during more strenuous exercise, meals, etc. Libre Freestyle helped sometimes - shows the overnight patterns, and how bad having a snack at night was on my overnight levels which my remaining beta cells had to fight and got tired out from. And it showed having extra wine meant lower levels overnight for me overnight. When I travel I always use this device, and never have more than one glass of wine to be safe, and drop my insulin dosing down.

I trialled verapamil for 3 months on the basis of a phase II study from the US in 28 newly diagnosed adults with T1 (nearly half on verapamil) in which their pancreatic function was helped by verapamil. They got a boost in function at 3 months, then at one year they had less decline in c-peptide function (and lower doses of insulin) than those without verapamil - but they still had some decline. It looked like it was working for me a few weeks in, but it gave me swollen ankles and shortness of breath which did not help my exercise. Then my insulin requirements jumped up and I stopped it. My c-peptide went down a bit in that 3 months also, consistent with some decline.

I hope this is a little bit helpful. Frankly it is a rubbish disease and being geeky and in control makes me feel better about it. But everyone is different. Sorry for the long post.

I'm interested in others' experiences in trying to extend their honeymoon as adult T1s.

Good luck.

 

[Fido78]

Hi, I also got diagnosed at the age 36 in dec 2014. Ofcourse you feel sorry for your self at the beginning, who woudn´t. You will do fine. Only adjustment realy for me is, that I have changed my diet drastically, from very high carb to low carb/high protein diet like doctor Bernstein is advocating. I have been able to get by with 10 units basal thus far and sometime take maybe 1 unit fast acting with a meal with a little more carb in it than I like. Good luck!

 

[ThereseB]

Hi I have just been diagnosed as T1 at 36. I am a 36 yr old male and had a random health check at work back in november which showed bg of 9, so followed it up at doctors and then hospital. C peptide of 375 so now diagnosed as T1 and due to go to hospital Monday to start insulin. My doctors surgery dignosed me as type 2 from the c peptide and were due to start me on metphormin! Its been a long ****** journey tbh with a total lack of communication from doctors and hospital - I just want to get on with it and start treatment now. Still no symptoms at all, but ive been checking blood glucose around 4 times a day and have always eaten a very healthy diet (5ft 10 and weigh 11stone 7). Im just trying to get over the anger and unfairness of it all at the moment, but im sure that will subside. Anyway...! Any help of advice welcome

I feel your pain - although it is 37 years since I received the devastating news and I too, was just 33 years old! I had the ‘why me? the *** and everything else in between. The journey you are on is a huge learning curve BUT if you keep an open mind your life will not change completely. You have a condition, not an illness. YOU are in charge, not the condition. As long as you follow guidelines, adjust them to your lifestyle, everything is possible. Never let the condition be your lifestyle - live your life with the condition. I have survived with this mantra for 37 years and it has never let me down. When I started my regime, the syringes were like ‘bicycle pumps’, glass, and had to be drawn up from a vial! Today is a far cry from that and in years to come I’m sure it will be on an ‘insulin through the ages’ display! You will be absolutely fine once your anger at the unfairness of the curve ball which has just landed subsides!(though it will rear its ugly head at all different times in the future!) I wish you all the best and assure you that life will not be changed once you accept the condition and do not let it determine your life. You are you, and diabetes is part of your baggage but it is not you and never let it become you! Good luck and always remember you have diabetes, diabetes does not have you!

 

[KevGr]

Hi @KevGr how did it go at the hospital?

Thank you for all the replies. So so helpful and i cant thank you enough.

Hospital went great with a lovely and very helpful diabetic nurse. It has been a rough few months beforehand with little or no information and only 3 letters....
I have been told to eat a bit more as i lost over a stone by cutting my carbs in the past month or so going from 12 and a half stone to 11 stone 4. I have just started on '2 clicks' of levemir every night at 9pm to begin with due to blood glucose not being too bad and now i am around 4.1 to 4.6 before meals down from 6's. She initially didnt want to give me insulin, but take tablets for a while. I just wanted to get on with it and get used to the routine.
I feel positive and just getting on with it now although i am only 3 days in! The insulin injection was surprisingly easy and pain free....i was really scared about it.
Ive got to ring dvla and hospital today to check in, but things carry on. I have an amazing wife and 2 sons who keep me going and active every day!
I know the honeymoon phase will end at some point, but it will then give me a base line for insulin.

The only annoying thing is peoples misunderstanding of T1 to T2 and thinking that i had a bad diet or now need to watch everything i eat. You feel like you are being watched at every meal! But hey i didnt know anything about it before i got it!

Thank you again everyone for all the words and replies. It really means a lot!

 

[porl69]

Thank you for all the replies. So so helpful and i cant thank you enough.

Hospital went great with a lovely and very helpful diabetic nurse. It has been a rough few months beforehand with little or no information and only 3 letters....
I have been told to eat a bit more as i lost over a stone by cutting my carbs in the past month or so going from 12 and a half stone to 11 stone 4. I have just started on '2 clicks' of levemir every night at 9pm to begin with due to blood glucose not being too bad and now i am around 4.1 to 4.6 before meals down from 6's. She initially didnt want to give me insulin, but take tablets for a while. I just wanted to get on with it and get used to the routine.
I feel positive and just getting on with it now although i am only 3 days in! The insulin injection was surprisingly easy and pain free....i was really scared about it.
Ive got to ring dvla and hospital today to check in, but things carry on. I have an amazing wife and 2 sons who keep me going and active every day!
I know the honeymoon phase will end at some point, but it will then give me a base line for insulin.

The only annoying thing is peoples misunderstanding of T1 to T2 and thinking that i had a bad diet or now need to watch everything i eat. You feel like you are being watched at every meal! But hey i didnt know anything about it before i got it!

Thank you again everyone for all the words and replies. It really means a lot!

It gets easier as you go along. You seem to be coping very well. I have been T1D for 48 years and still learn new things regularly. The only predictable thing about diabetes is its unpredictability!

 

[Knikki]

Hi @KevGr

Best thing to do is get your family involved as the more they know the more they can help if things go wrong, while I can feel hypo's my other half can pick them up sooner than I can, sometimes anyway. Unfortunately for Mrs Knikki she then has to deal with a stroppy 5 year old

As for the T1, T2 confusion, yes happens a lot you soon get used to people saying "ooo your diabetic you cant eat this" which once you get more used to things you can educated them.

My usual response is "oh really? Watch me" however being T1D for 50+ years gives me a little more leeway to play with

Take care and as @porl69 pointed out we still learn things even the old timers

 

[porl69]

Hi @KevGr

As for the T1, T2 confusion, yes happens a lot you soon get used to people saying "ooo your diabetic you cant eat this" which once you get more used to things you can educated them.

My usual response is "oh really? Watch me" however being T1D for 50+ years gives me a little more leeway to play with

Haha made me giggle. That happens a LOT!

 

[Marie 2]

I have a different outlook of being diagnosed a type 1. I was happy! Yes happy! Not because I was a type 1, who wants that? But because I finally knew what was going on after years of being misdiagnosed.

The years of frustration, wrong drugs, being sick from those drugs. Yes I was happy I was diagnosed as a type 1. Because then you know what you need to do and you can make it better, feel normal, do normal things, you at least know what's going on and there is a good treatment for it, insulin! Insulin pumps, CGM's. CGM's are the best you can read your sugar without finger sticking 50 times a day by looking at your phone or reader.

I eat what I want, pasta, whole grain bread etc. I dose for it. I am not low carb. I only eat about 120 carbs a day but that is because I don't eat a lot as I'm retired now. My A1C is 6.4 and I am happy with that. It seems to keep steady at that level over the years.

 

[Lynnzhealth]

Hi, @KevGr , yes, it is a shock, we've all felt that way at the start but it fades once you get a few of the basic rules of T1 management under your belt.

I went through the, "it's not fair, why me?" stages too, but, at the end of the day, it's just biology, and biology doesn't do "fair".

It might seem very limiting at the moment - your docs might put you on set meals for a while to reduce some of the variables - but that's only for a while, and you'll soon learn that T1s have a lot of leeway with food.

Provided you pay attention to the amount of insulin you take and how you time it, you can go out for a curry, Chinese buffet, three course meal, a few beers at the weekend, just like anyone - I do that sort of stuff often and still keep my levels in check.

It becomes something which you just learn to fit in with your life. A bit of your body has stopped working, so, instead of hating it, try to think of it as something you need to look after, care for (it'll take some time to look at it like that, but it's do-able).

I almost died when I was dx'd, full-on DKA, diabetic ketoacidosis, thought I was going to be some sort of cripple sitting on the sidelines for the rest of my life.

But a few months later, I was standing on my skis in the Scottish Highlands on a sunny spring day surrounded by beautiful scenery, thinking I am so not dead, and the only thing I needed to think about from a T1 point of view was whether I needed 1 or 2 units of insulin for a couple of bacon rolls at lunch.

It's terrifying at the moment, but, believe me, you will find simple ways of dealing with this, and will look back and wonder why you were worrying about it.

Good luck!

I went into full-on DKA last week, too, and didn't know what was going on with me. I watched the video you sent me and that was very interesting. Gives me lots of hope. It's only my first week, however, I'm still a bit nervous over how fast my sugars can fall. I just watched another video from She's Diabetic on how to insert my new FreeStyle sensor. I have to let it warm up for an hour, then check it out. After being on LCHF for 2 years it sure feels good to be able to eat 'normal' food (as in carbs). I think I ate everything in sight when I was in the hospital last week. I liked the LCHF eating lifestyle, however will have to learn not to eat too many carbs once I get used to this. I wish everyone good luck with this. And, thank you for this forum. Sure helps to hear other stories and know it will only get better.