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Diagnosed Type 1 at 57
- Thread starter HelenW
- Start date
- Status
SB2015
Well-Known Member
- Relationship to Diabetes
- Type 1
Welcome from another late starter with T1 (diagnosed at 53)
It is a big adjustment and takes some getting used to, but it does get easier.
I liken it to learning to drive. It seems very complicated at first but then much of it becomes automatic.
If you are happy to do so, let us know which insulins you are using. This will help us to help you with more informed answers. Your head will no doubt be full of questions. Just ask. Nothing is considered silly on here, and there is a load of experience to tap into.
It is a big adjustment and takes some getting used to, but it does get easier.
I liken it to learning to drive. It seems very complicated at first but then much of it becomes automatic.
If you are happy to do so, let us know which insulins you are using. This will help us to help you with more informed answers. Your head will no doubt be full of questions. Just ask. Nothing is considered silly on here, and there is a load of experience to tap into.
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
Welcome @HelenW 🙂 A Type 1 diagnosis is a big shock and quite overwhelming to start with, but it does gradually get easier. It’s an emotional shock too, so be kind to yourself.
There are a couple of books often recommended for Type 1s here:
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).
Ask anything you want here too. Nothing is ‘silly’ or too trivial. You’re among people who understand.
There are a couple of books often recommended for Type 1s here:
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).
Ask anything you want here too. Nothing is ‘silly’ or too trivial. You’re among people who understand.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Hi and welcome.
I was 55 at diagnosis and just coming up to my 5years diaversary and 60th birthday in a couple of weeks. So pleased you have found this forum as it has been a huge support to me over the past 5 years and I have learned more from the members here than from any other source and that is not knocking my health care professionals, but living with diabetes day by day and night by night and meal by meal is very different to what the medical professionals will have you believe, plus as diabetics we are all different and the range of what is normal is very broad, so coming here and comparing notes with others and feeling more normal, especially when things are not going smoothly, is really comforting. I hope you find it a similar benefit being here.
Which insulins have they started you off on and do you have a sensor to monitor your BG levels or are you just finger pricking?
Would you like to tell us how your diagnosis came about? Hopefully not an emergency hospital visit with DKA although that is quite a common route.
If you have any questions for us, feel free to ask them. We all know how totally overwhelming it is at first. It was almost like people were talking a foreign language and when you are feeling so overwhelmed and emotional, it is hard to take it all in. Coming here to the forum, really helped me fill in the blanks where info had gone in one ear and out the other and provided me with support between appointments and just improve my understanding of it all.
I was 55 at diagnosis and just coming up to my 5years diaversary and 60th birthday in a couple of weeks. So pleased you have found this forum as it has been a huge support to me over the past 5 years and I have learned more from the members here than from any other source and that is not knocking my health care professionals, but living with diabetes day by day and night by night and meal by meal is very different to what the medical professionals will have you believe, plus as diabetics we are all different and the range of what is normal is very broad, so coming here and comparing notes with others and feeling more normal, especially when things are not going smoothly, is really comforting. I hope you find it a similar benefit being here.
Which insulins have they started you off on and do you have a sensor to monitor your BG levels or are you just finger pricking?
Would you like to tell us how your diagnosis came about? Hopefully not an emergency hospital visit with DKA although that is quite a common route.
If you have any questions for us, feel free to ask them. We all know how totally overwhelming it is at first. It was almost like people were talking a foreign language and when you are feeling so overwhelmed and emotional, it is hard to take it all in. Coming here to the forum, really helped me fill in the blanks where info had gone in one ear and out the other and provided me with support between appointments and just improve my understanding of it all.
Franthepotter
Well-Known Member
- Relationship to Diabetes
- Type 2
- Pronouns
- She/Her
Hi Helen I'm newly diagnosed type 2 but this forum is really helpful. I have been quite anxious and a little nervous and depressed but its not so bad really . It's a health condition with treatment. What's hard I think is working out how to navigate that and not knowing how our bodies will react over time. Be strong. Women (apologies for assumption) give birth, beat cancers and run countries all of which are also scary but it can be done.
Franthepotter
Well-Known Member
- Relationship to Diabetes
- Type 2
- Pronouns
- She/Her
I hope that's appropriate to write. Apologies if not x
Goog morning and thank you for taking the time to reply. So a year or so ago I was diagnosed with type 2 diabetes and put on medication and given a finger pricier. This worked for a while but I needed more medication as time went on. Gp added new medication and still very very high levels.
They recently done some different blood tests and the results were off the scale like the normal range was 0-5 on the ‘GAD’ one and my result was ‘more than 2000 !! And the other two were pretty similar so off the range by hundreds and thousands!!
I then quickly got a call to say I had an appointment to discuss them.
So an hour after the appointment on Thursday I’m fitted with a sensor, libre2 and I’m sent packing with a new diagnosis of type 1 diabetes and told to take Abasaglar long acting and Trurapi short acting.
I start them both today as there was a wait for them at chemist.
To say I’m a little scared and very under prepared is an understatement
Franthepotter
Well-Known Member
- Relationship to Diabetes
- Type 2
- Pronouns
- She/Her
Hi Helen I work as a maths teacher when not potting. When items are 'off the scale' like that it can mean that results are 1000 tines higher than normal, but sometimes only that there is an increading exponential scale.
As an example, I'm unfit and have a bad back. I walk gently on the flat with my mate Sarah. I can walk for 20 mins. Say we add 10 mins. My heart rate and back pain are still the same. Say I add another 5 mins, I'm still happy. That's a linear rise in pain with distance.
Last night I went on a jog for my fitness near some hills. I jogged for for 20 mins and then had to stop standing up as was tired. I added 10 mins and had to sit down. I couldn't do the final 5 mins at all.That's an exponential rise in pain with distance as adding even a tiny bit of distance had increased my exhaustion.
I'm not saying that your results are not high or extremely high (I'm not a doctor) but measured values that rise are often not linear so you may be worrying about a single marker.
You can look up 'limits' 'rates of change' 'safe levels' by age etc on the Web. Published medical journals (pubmed) are mostly free, albeit quite technical. There are free web resources that doctors use as well. Someone on this site may also have had similar and understand the medicine.
Hope that helps
Franthepotter
Hi. Thank you for your reply and kindness.
My most recent blood tests results were
‘Glut.acid decarboxylase ab’
Normal range 0-5 U/ml
My result more than 2000 U/ml
Zinc Transporter 8 Antibody
Normal range 0-15 U/ml
My result 154.9 U/ml
IA-2 Antibodies
Normal range 0-7.5 U/ml
My result 811.9 U/ml
Probably sound worse than they are just relieved that it’s now been picked up and I’m starting my insulin. First one done
My most recent blood tests results were
‘Glut.acid decarboxylase ab’
Normal range 0-5 U/ml
My result more than 2000 U/ml
Zinc Transporter 8 Antibody
Normal range 0-15 U/ml
My result 154.9 U/ml
IA-2 Antibodies
Normal range 0-7.5 U/ml
My result 811.9 U/ml
Probably sound worse than they are just relieved that it’s now been picked up and I’m starting my insulin. First one done
Robin
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
These are blood tests where the actual figures aren’t really important, any significant rise in them means your immune system is regarding your beta cells as hostile, and is busy eliminating them. In Diabetes terms, a diagnosis of Type 1. Which is quite a relief if you were being treated for Type 2 and finding nothing was working. (been there, got the teeshirt!).
Over time, @Franthepotter, the antibody levels registered on the tests may fall back down, and you may have 'normal' results (not that they’ll ever be repeated, there isn’t any point) but that only means the immune system is saying, job done, we’ve eliminated all those pesky insulin producing cells…one of the few cases, I suspect, where a return to normal of test levels isn’t accompanied by a 'good, all is well' feeling!
Franthepotter
Well-Known Member
- Relationship to Diabetes
- Type 2
- Pronouns
- She/Her
Ah that's helpful thanks Robin.
The_Bowlii
Well-Known Member
- Relationship to Diabetes
- Type 1
Hi @HelenW - I was diagnosed 5 months ago aged 56 and completely shocked. Getting to grips with Libre2, CGM, changes to eyesight, watching and measuring carbs, matching insulin… it was completely overwhelming. I took every opportunity to see the health professionals (had blood measurements like yours), dietician, GP nurse, diabetes nurses etc. to get as good an understanding as possible. And let’s be honest, quite a few very dark moments feeling sorry for myself, unable to concentrate at work, mild depression diagnosed etc. Five months on, things are a lot brighter. It’s a pain in the backside to be sure but it’s manageable and it does begin to fade. This forum is great and you’ll not be alone!
Hi lovely. So nice to hear from someone my age and ‘gets it’ I’ve been told to give myself 4 units of fast acting before meals so not spoken about the measuring of carbs yet. Presumably that will come soon as only started injections this morning. I’m certainly feeling sorry for myself atm my mum passed away unexpectedly at Christmas so I don’t have her to talk things through with so I’m sure this will be a godsend in just being able to ask questions and get reassurance x
The_Bowlii
Well-Known Member
- Relationship to Diabetes
- Type 1
No consolation but my dad passed away relatively recently and I miss him every day. I just wish I could talk to him but I can’t. That’s part of the reason I’ve found it so hard tbh.
That aside, your diabetes nurses will be able to help you match insulin to carbs. If you want to get a little ahead, try downloading the Carbs & Cals app and logging your food. You’ll get a feel for the carbs you are eating and that will help you match your insulin in the medium term. Fixed doses are very normal for the first few weeks to bring your levels down slowly. You might get temporary blurred vision but don’t go out and get new glasses as it will settle down! 🙂
Personally, I was worried it would catastrophically impact my life, especially involvement with sport and outdoor activities. In fact, it’s all fine - just needs a bit more planning but all eminently manageable.
Take care - we are all here for you.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Really sorry to hear you just lost your Mum. Heartfelt sympathies. It is a tough time!
So pleased you have a positive result from your antibody tests as that takes away any uncertainty about your diagnosis as now being Type 1 and getting the correct treatment (insulin) and the associated tech devices (Libre) and education to support you with your insulin usage at some point in the near future which would be a DAFNE (Dose Adjustment for Normal Eating) course or whatever you local equivalent might be. You will usually be started on fixed doses of your meal time insulin (Trurapi in your case) often referred to as bolus insulin and then gradually encouraged to carb count and adjust it to what you eat, but the intensive course (DAFNE or local equivalent) is a much more in depth look at adjusting your insulin doses (both meal time, bolus insulin and long acting, basal insulin, to suit your body and lifestyle needs including adjusting them for exercise and illness and alcohol use with a whole host of everyday examples used to illustrate various circumstances where you need to consider your insulin usage). It all seems very complex at first but like learning to drive a car where there are lots of things to think about, gradually it becomes second nature and you are able to do most of it on auto pilot and recognise the circumstances where you need to give it more thought and be extra careful, like driving somewhere you have never been before or in the city at rush hour etc.
The important thing to know is that we all make mistakes from time to time and get our doses wrong and sometimes have hypos or our levels go very high. Don't beat yourself up about these situations, just deal with them promptly by eating your appropriate hypo treatment or taking extra insulin to bring it down when you have been instructed how to do that and spend a few minutes afterwards trying to figure out what went wrong and how you could possibly have prevented that situation and then put it behind you and move on. Having perfect control of our BG levels is impossible because there are simply too many factors which affect them and we don't have control of all of them. The best we can hope for is to manage them reasonably well and not have too many accidents or near misses and most importantly, be prepared to treat any hypos promptly because they will occasionally catch you out when you least expect them.
Have you been given advice about treating hypos and what are appropriate hypo treatments?
So pleased you have a positive result from your antibody tests as that takes away any uncertainty about your diagnosis as now being Type 1 and getting the correct treatment (insulin) and the associated tech devices (Libre) and education to support you with your insulin usage at some point in the near future which would be a DAFNE (Dose Adjustment for Normal Eating) course or whatever you local equivalent might be. You will usually be started on fixed doses of your meal time insulin (Trurapi in your case) often referred to as bolus insulin and then gradually encouraged to carb count and adjust it to what you eat, but the intensive course (DAFNE or local equivalent) is a much more in depth look at adjusting your insulin doses (both meal time, bolus insulin and long acting, basal insulin, to suit your body and lifestyle needs including adjusting them for exercise and illness and alcohol use with a whole host of everyday examples used to illustrate various circumstances where you need to consider your insulin usage). It all seems very complex at first but like learning to drive a car where there are lots of things to think about, gradually it becomes second nature and you are able to do most of it on auto pilot and recognise the circumstances where you need to give it more thought and be extra careful, like driving somewhere you have never been before or in the city at rush hour etc.
The important thing to know is that we all make mistakes from time to time and get our doses wrong and sometimes have hypos or our levels go very high. Don't beat yourself up about these situations, just deal with them promptly by eating your appropriate hypo treatment or taking extra insulin to bring it down when you have been instructed how to do that and spend a few minutes afterwards trying to figure out what went wrong and how you could possibly have prevented that situation and then put it behind you and move on. Having perfect control of our BG levels is impossible because there are simply too many factors which affect them and we don't have control of all of them. The best we can hope for is to manage them reasonably well and not have too many accidents or near misses and most importantly, be prepared to treat any hypos promptly because they will occasionally catch you out when you least expect them.
Have you been given advice about treating hypos and what are appropriate hypo treatments?
- Relationship to Diabetes
- Type 1
- Pronouns
- He/Him
Sorry to hear about your diagnosis, and sincere condolences on the loss of your Mum @HelenW
Grieving is a long and complex process, and some people experience a form of grief around their diagnosis with diabetes - so you may now have grief on top of grief to further complicate things. So be kind to yourself, and look after your brain and emotions. Cruse the national grief charity offer free courses of counselling sessions which I found really helpful (my wife died 5 years ago).
Try not to feel overwhelmed by your T1 diagnosis (easier said than done!). There has never been a better time in history to live with type 1 diabetes, and modern treatment techniques, monitoring, screening, insulins, and technologies like sensors and insulin pumps, make it more possible than ever to achieve near-normal glucose levels for a much higher proportion of the time.
It’s still a serious condition that needs careful handling. It’s often infuriating and inconsistent to live with, but it shouldn’t stop you doing things you enjoy, and you should be able to find ways to fit it into your life rather than having to work your whole life around it.
Keep asking questions, and sharing your worries. You aren’t alone, and folks here ‘get it’. 🙂
Grieving is a long and complex process, and some people experience a form of grief around their diagnosis with diabetes - so you may now have grief on top of grief to further complicate things. So be kind to yourself, and look after your brain and emotions. Cruse the national grief charity offer free courses of counselling sessions which I found really helpful (my wife died 5 years ago).
Try not to feel overwhelmed by your T1 diagnosis (easier said than done!). There has never been a better time in history to live with type 1 diabetes, and modern treatment techniques, monitoring, screening, insulins, and technologies like sensors and insulin pumps, make it more possible than ever to achieve near-normal glucose levels for a much higher proportion of the time.
It’s still a serious condition that needs careful handling. It’s often infuriating and inconsistent to live with, but it shouldn’t stop you doing things you enjoy, and you should be able to find ways to fit it into your life rather than having to work your whole life around it.
Keep asking questions, and sharing your worries. You aren’t alone, and folks here ‘get it’. 🙂
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