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Newly Diagnosed Type 1
- Thread starter AJB1969
- Start date
- Status
Welcome to the forum and the Type 1 club!
I am sure everyone will have their tips, off the top of my head, I would say
- be nice to yourself and don't expect perfection
- remember "type 2 diabetes" is often abbreviated to "diabetes" so much of what is written about "diabetes" is not relevant to Type 1.
- if you don't already have one, insist on Libre to keep an eye on your blood sugars but have a read around as it does not replace all finger pricks - its value is seeing what happens between pricks.
- if/when you feel up to it, push to do carb counting and adjust your own insulin dose. It gives us much more freedom than fixed doses.
- check out the Learning Zone
- don't be afraid to ask questions. It is hard to think of one the forum will think of as stupid.
I am sure everyone will have their tips, off the top of my head, I would say
- be nice to yourself and don't expect perfection
- remember "type 2 diabetes" is often abbreviated to "diabetes" so much of what is written about "diabetes" is not relevant to Type 1.
- if you don't already have one, insist on Libre to keep an eye on your blood sugars but have a read around as it does not replace all finger pricks - its value is seeing what happens between pricks.
- if/when you feel up to it, push to do carb counting and adjust your own insulin dose. It gives us much more freedom than fixed doses.
- check out the Learning Zone
- don't be afraid to ask questions. It is hard to think of one the forum will think of as stupid.
Thankyou so much! Its all very overwhelming! Will be dipping in and out of this for tips, food ideas x
Food ideas - same as a healthy diet before you had diabetes.
As I mentioned, Type 1 is not the same as type 2. You have the tools (insulin) to eat what you want. You may find some foods are more challenging (e.g. some people avoid carby fatty food like pizza) but it is about learning to use insulin not restricting your diet.
Thankyou, i appreciate your help x
Thebearcametoo
Well-Known Member
- Relationship to Diabetes
- Parent of person with diabetes
Hi and welcome. You get comparatively little support as an adult being diagnosed compared with the help we get with a child’s diagnosis but the same principles apply. Insulin will help stabilise you and stop you from going downhill. It will take time to adjust and take onboard all the information you need. To begin with try to look at stabilising your numbers even if they’re not near target. Get on a carb counting course as soon as you can and then gather the data to be able to match your insulin ratios to your food. Always carry hypo treatments with you. And get used to carrying your testing kit wherever you go.
Thanks for the advise. I've been told it's rare to be diagnosed at my age ♀️
Bruce Stephens
Well-Known Member
- Relationship to Diabetes
- Type 1
It's uncommon but not that uncommon. I think the much better support for children is more a historical hangover rather than where things would be if the services were being constructed now, though the majority are still diagnosed at under 30 (I think) and I think the modal age (when most are diagnosed) is 13.
It kind of works to treat adults with diabetes as though they have Type 2, gradually (or quickly) escalating the treatment until they're using insulin very much as adults who were diagnosed Type 1 as children (as I was). They're better (though certainly not perfect) at recognising Type 1 in adults now which I'm sure improves earlier treatment.
Robin
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Not all that rare. There are quite a few of us on here. And there were two high profile cases in the past few years, Theresa May and the speaker Lindsay Hoyle.
I was 51! A lot of people got misdiagnosed as Type 2 though, on grounds of age, because GPs tended not to realise how common it is to be diagnosed as adults. (I think someone quoted the statistic on this forum the other day, that the median age for diagnosis with Type 1 is 39!)
It is above the average age of diagnosis - the Median age is 39 - but not as rare as many think. Type 1 is not a childhood disease - less than half of people with Type 1 are diagnosed under the age of 20.
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
My tips are to take it easy. Look after yourself physically and mentally, and don’t think you have to rush back to normality. Go slowly and steadily.
An important thing to say is that nobody - and I mean nobody - achieves perfect sugars all the time with Type 1. The targets are there to give us an idea of what to aim towards. I found that the hardest thing to get my head round. I thought that if I did everything right, my results would be perfect. But Type 1 isn’t like that. It’s not a Ferrari that you coast down the French Riviera in, it’s an annoying supermarket trolley with a wonky wheel that you’re frequently stopping to re-adjust or use a few choice words on!
Type 1 is all about balance. We can eat normally but just need to learn to adjust our insulin and think and plan a lot more. It’s overwhelming to start with but it does gradually get easier.
Finally,
Here are two great books about Type 1:
Think Like a Pancreas’ by Gary Scheiner.
And Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (ignore the title - it’s great for adults too).
.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Hi and welcome from me too another late starter with Type 1 at 56yrs. There are quite a lot of us here on the forum, so you are not alone or that uncommon.... Hope that doesn't make you feel less special 🙄. I think there will possibly be a lot more diagnoses triggered by Covid too so I fully expect that median age to continue to rise a bit.
Anyway, I hope you find the forum as hugely beneficial as I have over the past 3.5 years since diagnosis. It really is a goldmine of knowledge and experience and support, so do dig in.
This is such a brilliant analogy. I've never heard it used before, but it is absolutely spot on. You will gradually figure out techniques to manoeuvre your wonky trolly more efficiently, but it takes time and practice and it will still be wonky so if your concentration lapses you will soon be reminded. Nothing major usually, just a period of frustration whilst you get it straightened up again.
Anyway, I hope you find the forum as hugely beneficial as I have over the past 3.5 years since diagnosis. It really is a goldmine of knowledge and experience and support, so do dig in.
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
It came to me today @rebrascora - borne more of frustration than creativity! I was just thinking about times when our diabetes is being a total pain, and how important it is to remember that although people with Type 1 can walk to the South Pole, win medals, travel the world, work in a high-paid job, etc, sometimes things are just hard through no fault of our own. Acknowledging that and knowing that we’re not alone is important.
SB2015
Well-Known Member
- Relationship to Diabetes
- Type 1
Love that analogy @Inka
Welcome to the forum @AJB1969 from another late starter (diagnosed aged 53)
It all takes a bit of getting used to, and my top tip is don’t expect perfect levels.
They are impossible to achieve, since T1 just doesn’t behave the same every day.
It is a ‘supermarket trolley with a wobbly wheel’ And does the unexpected at times.
If you fancy letting us know what insulins you are using that can help us with our responses
Have they mentioned carb counting. It is good to get onto this as soon as you feel ready. With this you will be able to start adjusting your quick acting insulin for meals and just eat what you choose to.
Keep in touch and fire away with any questions that arise. Nothing is considered silly on here, and Inhave learnt most of what I know from others here. Just ask.
Eternal422
Well-Known Member
- Relationship to Diabetes
- Other Type
- Pronouns
- He/Him
Welcome @AJB1969 to the forum. This is a great place with loads of information and lots of people who have endless knowledge about living from day to day with diabetes.
I was diagnosed at age 42 with T2 and within a few years moved onto just insulin - mixed once a day at first which meant having to eat similar content meals at the same time each day to avoid hypos, then at my request, onto basal-bolus and carb counting which has served me well over the years to get much better control plus flexibility in what and when I eat! Now, finally at age 62 and a referral from my GP to the hospital to help getting better control with insulin I have a diagnosis of T1 (and most likely was all along), put onto Libre (absolutely brilliant device) and have some great help from the diabetes team at the hospital to really tweak what I’m doing to improve control and ultimately get me a better HbA1C.
Incidentally my diabetic specialist nurse (DSN) at the hospital told me that people are being diagnosed as T1 at all ages, so you’re not alone! Certainly going back a few years the assumption seemed to have been that you are T2 if presenting with symptoms as an adult. Thankfully it seems that knowledge and understanding has improved vastly over the years!
My advice is to take things slowly and don’t get overwhelmed with everything. I would definitely echo advice from others above, especially getting the Think Like A Pancreas book - loads of information but so very useful and written in easy terms to make it easy to understand more of what is going on and how to adjust your insulin. My other advice would be to keep asking questions, of your diabetes healthcare team and on here.
Good luck with everything!
I was diagnosed at age 42 with T2 and within a few years moved onto just insulin - mixed once a day at first which meant having to eat similar content meals at the same time each day to avoid hypos, then at my request, onto basal-bolus and carb counting which has served me well over the years to get much better control plus flexibility in what and when I eat! Now, finally at age 62 and a referral from my GP to the hospital to help getting better control with insulin I have a diagnosis of T1 (and most likely was all along), put onto Libre (absolutely brilliant device) and have some great help from the diabetes team at the hospital to really tweak what I’m doing to improve control and ultimately get me a better HbA1C.
Incidentally my diabetic specialist nurse (DSN) at the hospital told me that people are being diagnosed as T1 at all ages, so you’re not alone! Certainly going back a few years the assumption seemed to have been that you are T2 if presenting with symptoms as an adult. Thankfully it seems that knowledge and understanding has improved vastly over the years!
My advice is to take things slowly and don’t get overwhelmed with everything. I would definitely echo advice from others above, especially getting the Think Like A Pancreas book - loads of information but so very useful and written in easy terms to make it easy to understand more of what is going on and how to adjust your insulin. My other advice would be to keep asking questions, of your diabetes healthcare team and on here.
Good luck with everything!
- Relationship to Diabetes
- Type 1
- Pronouns
- He/Him
Welcome to the forum @AJB1969
Glad that you have joined us! Not least because your thread gave rise to @Inka ’s brilliant Ferrari / supermarket trolley analogy. Really made me chuckle, and SO on point.
It’s not at all unusual to feel overwhelmed and knocked sideways by your diagnosis in the early months, so be kind to yourself and give yourself time to adapt. And to paraphrase another great analogy from @SB2015 - managing T1 can be a bit like learning to drive. In the early days everything takes intense concentration, but soon enough things like changing gear and manouvrring become automatic, and you can concentrate more on where you are going - and even have a conversation at the same time!
Likewise T1 can feel overwhelming and all consuming to start with - with every aspect needing to be consciously thought about in a very front-of-mind way. But soon enough you’ll be chatting away over lunch while your ‘diabetes brain’ eyeballs and estimates the amount of carbs on your plate as the waiting staff bring it to your table, and you reach into your bag for your insulin pen mentally knocking a unit or two off your calculated dose because of the uphill walk to the train station after lunch.
Keep firing away with any questions you have as they arise. Nothing will be considered silly or too obvious to be asked. 🙂
Glad that you have joined us! Not least because your thread gave rise to @Inka ’s brilliant Ferrari / supermarket trolley analogy. Really made me chuckle, and SO on point.
It’s not at all unusual to feel overwhelmed and knocked sideways by your diagnosis in the early months, so be kind to yourself and give yourself time to adapt. And to paraphrase another great analogy from @SB2015 - managing T1 can be a bit like learning to drive. In the early days everything takes intense concentration, but soon enough things like changing gear and manouvrring become automatic, and you can concentrate more on where you are going - and even have a conversation at the same time!
Likewise T1 can feel overwhelming and all consuming to start with - with every aspect needing to be consciously thought about in a very front-of-mind way. But soon enough you’ll be chatting away over lunch while your ‘diabetes brain’ eyeballs and estimates the amount of carbs on your plate as the waiting staff bring it to your table, and you reach into your bag for your insulin pen mentally knocking a unit or two off your calculated dose because of the uphill walk to the train station after lunch.
Keep firing away with any questions you have as they arise. Nothing will be considered silly or too obvious to be asked. 🙂
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