Thoughts on T1 info out there

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francescakate

francescakate

Active Member
Relationship to Diabetes
Type 1
I've been recently diagnosed with T1 and it came as a shock as quite a healthy 28 year old. I had some awareness about the difference between T1 and T2 because I have a friend who has been T1 since he was a baby, but I didn't realise adults could get it. I've been feeling recently that there really isn't any support or awareness is there?

Everyone I've told about my diagnosis has tried to tell me it must be T2 because I'm an adult. Even when I tell them it's definitely T1, they try to tell me to manage it by diet and when I tell them it's not possible, they tell me I must have had it since childhood. I look online for support in my area and it's all for people with T2. I was just in my GPs waiting room yesterday for an appointment for my son and I noticed at least 10 posters and leaflets all about T2 with all the local support groups, services that you can refer in to, awareness about symptoms. There was 1 posted about T1 in children and the symptoms but nothing about adults.

My GP seems to know nothing about T1, the receptionists whenever I call to try to sort out my prescription are completely unaware and when I explain I'm T1 they keep asking why I'm suddenly struggling to get prescribed medicine because they don't understand I've developed it as an adult. My hospital team haven't been able to see me yet, I'm seeing them next week but I've been diagnosed for 2 months now and other than online and my husband, nobody seems to be able to comprehend my diagnosis.

I'm sure that if I'd been diagnosed with T2 I'd probably still feel alone and overlooked too but it really feels like there is absolutely no awareness about adult onset T1 :( I'm not sure if anyone else feels that way? I've said to my husband I wish there was a bit more distinction between the types - maybe if they were called autoimmune diabetes and insulin resistant diabetes or something? I feel like the types confuse people.
 
Welcome to the forum, there are plenty T1 folk here who will be very supportive many of whom have been diagnosed as mature adults.
It will help them answer any questions you have if you give a bit more information about your diagnosis and what insulins you are on.
Meanwhile the Learning Zone has a dedicated section for Type 1 which I suggest you look at.
 
Aaaah @francescakate this idea that you get Type 1 as a child and type 2 as an adult is so frustrating. Especially when over 50% of people with Type 1 diabetes are diagnosed as adults.
Despite that, I think the reason most people think of type 2 diabetes is that 90% of people with diabetes have type 2.

The good news is that we are here on the forum. I was diagnosed in my mid 30s and was equally frustrated about the lack of support for newly diagnosed adults. Being told to "tell your teachers" was not helpful when what I really needed to know was what I did about driving.

Anyway, you are not alone. We are here to answer questions, have a rant with, have a laugh and provide support.
 
Leadinglights said:
Welcome to the forum, there are plenty T1 folk here who will be very supportive many of whom have been diagnosed as mature adults.
It will help them answer any questions you have if you give a bit more information about your diagnosis and what insulins you are on.
Meanwhile the Learning Zone has a dedicated section for Type 1 which I suggest you look at.
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Thank you 🙂 I don't actually have any questions about my diagnosis though! I've posted on here a few times and have found everyone really helpful. I'm in a good place right now with my medication and am currently in the honeymoon period. I more just wanted to have a bit of a whine about feeling like there is no awareness out there about adults developing T1. I was just wondering if anyone could relate really.
 
Leadinglights said:
It will help them answer any questions you have if you give a bit more information about your diagnosis and what insulins you are on.
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I struggle with this "provide me with your medical details" request. I know it is not meant that way but I prefer to ask for clarification than put pressure on someone who may be feeling a little fragile due to their recent diagnosis to download what they may consider to be personal information.
 
helli said:
I struggle with this "provide me with your medical details" request. I know it is not meant that way but I prefer to ask for clarification than put pressure on someone who may be feeling a little fragile due to their recent diagnosis to download what they may consider to be personal information.
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I've been open on this forum before about my diagnosis and medication as it was really confusing at the time, so it's not so much that I don't want to disclose it (though I imagine some people don't want to) - it's more that I don't feel it's relevant to this post as this is just me having a bit of a rant! I'm armed to the teeth with info about my diagnosis now, I just wish others in my life were too.
 
francescakate said:
I've been open on this forum before about my diagnosis and medication as it was really confusing at the time, so it's not so much that I don't want to disclose it (though I imagine some people don't want to) - it's more that I don't feel it's relevant to this post as this is just me having a bit of a rant! I'm armed to the teeth with info about my diagnosis now, I just wish others in my life were too.
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I was diagnosed with Type 1 at the grand old age of 51. Having been misdiagnosed as Type 2 first 'because of your age' and stuck on tablets which did nothing for 6 months! Luckily my GP was at least aware enough to think it might be a 'funny Type 2' and she referred me to a hospital consultant, where they see adults with Type 1 all the time, so I eventually got antibody tests and a correct diagnosis. Believe me, I did plenty of ranting at the time, and I get exactly where you are coming from.
I don’t know what can be done about educating practitioners in Primary health care, who see mostly Type 2s just because of the ratio of Type 1s to Type 2s, as @helli said above. We’ve even had people on here who have been Type 1 since childhood ranting because their health care practitioner has commented that now they are adult it must have turned into Type 2!
 
Good morning @francescakate.

I was diagnosed at the very young age of 63 in 2017 so a spring chicken I was not,
I have to say my after care is faultless after leaving the hospital. I have full access
to my surgery and hospital HCP`s even in the lock down periods but most of my info
comes from this forum, I was retested in November last year GAD & c Peptide this
was confirmation that the original diagnosis was correct.

The reason for the tests was because the surgery queried my diagnosis with the
Consultant because I always return a HbA1c below 40 mmol/l but they agreed it was
due to control with the help of the forum. I can understand your frustration about not
been able to get information from your surgery, is there a DUK support group near
you? a great way to meet fellow members and gain valuable information from people
in the same condition.
 
I "get" what you are saying as another late starter with Type 1 and whilst I can understand lack of knowledge in the wider community, the ignorance of adult onset Type 1 in primary care is concerning and frustrating as there are still many doctors and nurses who insist that "it can't be Type 1 because you are an adult" and I do wonder how many insulin dependent "Type 2" diabetics there are out there who never got the right diagnosis of Type 1 or LADA due to this ignorance!

As regards peer support, for me, attending a DAFNE course was a great way of connecting with other Type 1 diabetics in person and forming a bit of a support group, but the forum here has been my mainstay of support and advice and knowledge and helped me improve my Blood Glucose management and most of all hold onto my sanity and release my frustrations.
 
Many of us have suffered from ignorance about diabetes in the GP surgery. Fortunately my GP finally agreed to prescribe insulin and my surgery DN has a lot of knowledge including T1 and manages me well. What many don't understand is that viruses can damage the pancreas at any age and I believe my late onset was caused by a virus. In this case antibody tests such as GAD will find nothing but a C-Peptide is more useful. I've just recovered from omicron and my insulin needs have increased implying further damage to my pancreas from that virus. There is no excuse for your surgery not to prescribe the right meds for you regardless of your diabetes type. Speak to the Practice Manager if needed
 
KARNAK said:
is there a DUK support group near
you? a great way to meet fellow members and gain valuable information from people
in the same condition.
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I have never joined such a group (I get my D-hit from the forum).
I am just curious - do the local DUK groups "suffer" from the same problems as the GP surgeries that 90% of members have type 2?
I also (maybe unfairly) assume that the average age in local DUK groups is "mature" as they tend to hold their sessions during working days.
 
I dunno - the only places I've engaged with the local group they have all been evening meetings. Kidderminster one was started by a chap named Fred, parent of a T1 child, (can't recall his surname but won a goodly amount of recognition in the local press and by DUK) and the chair of the Nuneaton one was T1. Well attended by T1s and 2s. The Coventry group I went to once some years ago now was chaired and attended wholly by people from the Indian subcontinent and parts of proceedings not in English, the only time I attended it, it was an interesting experience to say the least - because I felt awful being the only white face in the room - we just aren't used to that, are we? Is that how dark skinned people are made to feel by us? I don't know, I only know I didn't enjoy it, so maybe since, I can be a bit more empathetic sometimes.

@helli - you get what you get as appropriate - but the events and speakers are usually sourced for their interest to the membership of that particular group - so podiatry opthalmology etc as well as diabetes consultants, dieticians and DSNs - even not actually per se medically qualified researchers - so not only directly concerned with diabetes - and they have to cater for all 'types' in the audience. In fact one of the researchers from Loughborough Uni who came to update us on her research was cross examining her audience at Nuneaton on the methods of treating T2 because she'd been told her own A1c was increasing - so I could weigh in with the success of lower carb approaches - which I wouldn't have even known about were it not for forums and DUK generally. Horses for courses.
 
Oh PS @francescakate - I had exactly the same prob 50 years ago - and now of course aged 71, still get it! (cos I'm ancient, it's obviously T2 - what do you mean you have an insulin pump? I didn't think T2s could have them ..... daft old fart ....) The only thing with GPs is, gradually the surgery will get used to you being T1 because as you've already found to your frustration, they are used to having adult T1s - though 50 years ago they did all know that you don't have to be a child to be diagnosed - so I have no idea whatsoever why such knowledge is not imparted to medical staff as a whole - and something else which has infuriated me the last 2 years - infection with Covid has caused quite a few people worldwide to become T1 and the media jumped on this as if it were NEW news. Viral infections have long been known to be the effective tipping point between being healthy and having T1 diabetes, should you happen to have the genes that make this possible. Mine was (most likely) a tummy bug in the Jan/Feb, diagnosed T1 in August. So - no surprise whatsoever that Covid can do it, really.
 
Surgery Drs know little about type 1 from own experience, ones I've seen are quite happy that patients are under care of hospital consultants.

Dont know about ratio of local DUK groups as never been to one, imagine most would be type 2 but that's just guess. Met some great people on carb course once but we didnt keep in touch, never even seen them in clinic since, tbh prefer it that way as meeting up would be like busmans holiday if you get my drift.
 
helli said:
I have never joined such a group (I get my D-hit from the forum).
I am just curious - do the local DUK groups "suffer" from the same problems as the GP surgeries that 90% of members have type 2?
I also (maybe unfairly) assume that the average age in local DUK groups is "mature" as they tend to hold their sessions during working days.
Click to expand...
Hi @helli.

Yes you are correct with thinking that most are of a mature age, the reason being most meetings
are held in the evening but there are events where younger D`s are present usually at weekends
because their school studies are very important. My Consultant and Endocrinologist often speaks
on the platform and I have a good relationship with her especially my D control, It doesn`t matter
what type you have were`re all diabetics irrespective. Its great to mix and enjoy an evening of learning
and the younger ones get to meet up with people of their own age and arrange trips away usually with
their parents.

Hope this helps to have a positive mind?

Jenny you crack me up.:D
 
Well I'm pleased you're so easily amused Ted.

I
 
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