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Just saying hello

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Diabolized

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Type 1
I'm new to this site. I've had type 1 for over twenty years. I was diagnosed at the age of forty one, so not a typical type 1.
Currently pumping using a Medtronic MiniMed 640G pump with Fiasp. Also use Freestyle Libre. Diabetes has taught me that its impossible to now everything about this condition and just when you think you've got a handle on it, it throws you a curve ball. Because of the pandemic the support group I usually attend is not running. I'm missing the support from others who know what it is like to live with diabetes. Maybe I'll see some of you in the forums.
 
Welcome to the forum @Diabolized from another late starter. I was 53.
There are fair few of us on here, as it has become more common.

As you say Diabetes can be very fickle and likes to wait until you think you have sorted basal rates and Bolus ratios before making some subtle (or not so subtle) change. I have recently started on a Medtronic pump (780) switching from my Roche Combo and opting for a closed loop system.

Great to have your experience on here.
I look forward to hearing more from you.
 
Thank you for the welcome. Is there an area on area on the site for "late starters"?. I've meet less than a handful of late starters and it would be useful to share experiences of being diagnosed with type 1 in midlife.
 
Welcome to the forum @Diabolized

We have a fair few members here who were diagnosed in later life.

I think overall the split between those diagnosed in childhood and adulthood is roughly 50:50 - which isn’t the reputation at all!

Good to have you here 🙂
 
Diabolized said:
Thank you for the welcome. Is there an area on area on the site for "late starters"?. I've meet less than a handful of late starters and it would be useful to share experiences of being diagnosed with type 1 in midlife.
Click to expand...
Us late starters just join in with the rest.

We can all help each other with tips on managing our Diabetes.
Just fire away with any questions, and chip in with your experiences to help others.
I have been surprised by the numbers of newly diagnosed joining more recently.
As you say it is good to have access to others.
 
My Type 1 friend in Cornwall was in her late 50s when she was misdiagnosed Type 2 (too old to be T1......took her the next 8 years to get the right blood tests to prove she was T1!)

I was hardly a child either - 22 and married, nearly 50 years ago now, so it's always happened, not a new phenomenon in the slightest. In fact one of the two founder members of Diabetes UK (Robin Lawrence) had qualified as a doctor and employed in a hospital when he was diagnosed so he wasn't a child either - and this was just before insulin as a treatment was discovered, so almost 100 years ago!

You may well have never heard of Robin - but may well have heard of the other diabetic who joined in this new venture - he was a bloke by the name of H.G. Wells (wrote a few books .....) Stranger things really do happen in real life than Sci-fi sometimes ! (whereas the chances of anything coming from Mars are still at least as unlikely as a million to one !!! LOL)
 
Re. late starters.
When I was diagnosed I was told I had insulin dependant diabetes. No mention of type 1 or type 2 diabetes. I was given a mass of leaflets about diabetes to take home and read. They spoke of Type 1, children and young adults who required insulin and Type 2, middle aged and older people who required treatment with diet alone or oral medication. I was throughly confused and felt like a freak as my symptoms fitted with type 1 but I was middle aged. Eventually a doctor at the hospital diabetes clinic said I had type 1.
If only there had been some information in that mass of leaflets I had been given about developing type 1 in middle age. The leaflets I had about type 1 showed pictures of children and teenagers. No wonder I felt a freak.

I know things have changed since my diagnosis nearly a quarter of a century ago. However, I still feel there is lack of information for older adults recieving a diagnosis of type1. Was I the only late starter who got excited when Theresa May had been diagnosed with type 1? At last I thought a high profile person diagnosed in middle age with type 1. Sadly, many in the media still believe type 1 is a condition associated with children and young adults and type 2 the overweight and middle aged.

Perhaps I was unlucky in being told I had insulin dependant diabetes rather than type 1 at diagnosis? Perhaps my experience was unusual? I've met less than a handfull of people who were diagnosed with type 1 in middle age. Initially they were all misdiagnosed with type 2 because of their age. I'd love to know what other peoples views are and hear from older adults who have recently recieved a type 1 diagnosis to see if things are changing.
 
Hi. I am another late starter. I was diagnosed 2 years ago at the age of 56. I was a self confessed sugar addict at the time so there was an assumption that I was probably Type 2 but my sudden onset symptoms and weight loss put a question mark in my HCPs minds although at the time I didn't really know enough to understand that. I embarked on Type 2 oral meds and a very strict very low carb diet and kicked my sugar habit in a concerted attempt to push it into remission but 6 weeks later I was started on insulin and referred to a consultant and 2 months after that I was tested for Type 1 (C-peptide and GAD antibody tests) and confirmed. Interestingly, the week before I was started on insulin, the members of this forum tipped me off that I was likely Type 1 and would need insulin.
Diabolized said:
Sadly, many in the media still believe type 1 is a condition associated with children and young adults and type 2 the overweight and middle aged
Click to expand...

Unfortunately it is not just the media. There are people on this forum who many of us suspect are Type 1 but whose GPs or DNs do not realise that Type 1 can occur at any age and are treating them as insulin dependent Type 2s and will not sanction Type 1 testing or refer them to a consultant. It is really frustrating to read of such cases and must be worse for the people involved as they are not being given the appropriate insulin regimes or access to tech like Libre and pumps. I feel like the HCPs think they are "bad diabetics" when in fact it is the HCPs who are providing BAD support. Diabetes is a condition which is very much in our own hands to manage but we need appropriate support to do so. For me, this forum has been the mainstay of that support but I was lucky in that my HCPs were more enlightened than some, or at least sought advice.... I know that my practice nurse (DN) had a couple of case conferences with the consultant about me in those early weeks. I think that is the exception rather than common practice.

Unfortunately the genuine Type 2s are not being given the appropriate dietary advice or tech like BG meters either so that they can effectively manage their diabetes through diet, exercise and medication if necessary so a revamp of the whole NHS diabetes strategy would be beneficial for everyone.
The press at least are starting to get on board with information about low carb diets etc with articles from the likes of Dr David Unwin.
 
Hello and welcome. 🙂
 
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