New T1 here

Lucyr

Lucyr

Well-Known Member
Relationship to Diabetes
Type 1
Thought that title might confuse you all, but guess what happened in my diabetes appointment today! Feels weird becoming type 1 after 15 years.

He showed me on the screen that as I’ve shared before, my diabetes type is just down as a question mark. So we went through all my diabetes history, family history (mainly lack of), test results etc. I’ll put the main ones below for anyone new in my position. Final conclusion was, yes I’m a unique case but let’s just call it type 1 as that’s far more likely than type 2. I was offered a new t1 education course on insulin adjustment, I accepted as I’m sure I’ve seen people here say it’s helpful even if you feel you know stuff already, plus I know it’s a box ticked for a future conversation about pumps.
 
The main factors in the decision were
  • Diagnosed age 20
  • On insulin 1-2 years after diagnosis
  • My weight is a risk factor for type 2, but there’s other overweight people in my family that are older than I was when I got diabetes and don’t have it
  • Other autoimmune conditions in the family
  • C-peptide low normal at 265, under 200 would be t1 and over 600 would be t2
  • Of the two antibodies tested for I only had one, but it has been 15 years
  • MODY unlikely due to lack of family history. T2 at 20 would likely mean having a parent or sibling with diabetes and none of mine have it. T1 is less likely genetic.
  • None of the T2 medications worked for me, got ketones with empagliflozin
  • I thought I take a lot of insulin but apparently for my weight it’s not, and a t2 would likely take double what I do
Think that’s all, it’s all I remember anyway! We agreed on increasing my insulin doses, reducing carbs and losing weight, and doing the insulin adjustment course at some point.
 
At last!!!

Yes, when I saw the topic pop up in the "What's new" list, I thought "Well that can't be right because @Lucyr isn't a new Type 1" and then I thought maybe it was another Lucyr which of course can't happen" before my mind gradually came to the conclusion that you have AT LAST got your diagnosis!

So relieved for you after all this time and great that they have offered you an education course straight away without prompting although it really should be offered to all Type 2s on MDI who are interested anyway in my opinion, but the potential for a pump in the future must give you a bit of a lift as well as just the relief from battling the system to get a diagnosis.

Really, really pleased for you and a wonderful late birthday present. Funny how often Type 1 seems to land on or around birthdays or Christmas!
 
Out of curiosity Lucy, was this a new consultant or the one you have seen a couple of times before? I seem to remember you had a lot of problems with different consultants over the years.
 
It was a new (to me) doctor, I didn’t actually find out if he is a consultant or registrar or what but he was very knowledgable and didn’t say “I’ll have to speak to doctor xyz” at any time so whatever level he is I liked him.

I have my consultant appointments in person because I couldn’t cope with phone calls when I don’t know who would call me. The dietician I do virtually and that’s fine as I know who it will be each time. My friend had previously spoken to the hospital for me to explain the distress the consultant appointments changing doctors sometimes caused me.

The agreement after that was that I would have those appointments in person, with the same doctor if possible, but when the doctor needed to change they would explain who they are and that they were covering dr x or whatever. Today was the first time since then that I’d actually had a different doctor and this system worked fine for me. I like my normal doctor and last time he’d left it as unknown type but closer to t1 than t2, so a second opinion of “unique case but let’s call it t1” worked for me
 
Fantastic. That opens up the possibility of a pump in the future if you need one and of course other tech. Go on the course, I did DAFNE when I got re classified from Type 2. Changed my life for the better.
 
Lucyr said:
It was a new (to me) doctor, I didn’t actually find out if he is a consultant or registrar or what but he was very knowledgable and didn’t say “I’ll have to speak to doctor xyz” at any time so whatever level he is I liked him.

I have my consultant appointments in person because I couldn’t cope with phone calls when I don’t know who would call me. The dietician I do virtually and that’s fine as I know who it will be each time. My friend had previously spoken to the hospital for me to explain the distress the consultant appointments changing doctors sometimes caused me.

The agreement after that was that I would have those appointments in person, with the same doctor if possible, but when the doctor needed to change they would explain who they are and that they were covering dr x or whatever. Today was the first time since then that I’d actually had a different doctor and this system worked fine for me. I like my normal doctor and last time he’d left it as unknown type but closer to t1 than t2, so a second opinion of “unique case but let’s call it t1” worked for me
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Yes, I knew part of your problem was seeing different doctors too often and that can be really hard to develop a rapport where they fully understand the situation, particularly with a case that isn't straightforward like yours and that some of them had left you really frustrated and upset because they were not seeing the full picture. It looks like you got a good, knowledgeable, thorough one this time, judging by all the points you have listed above which they have considered in order to come to their decision. I hope that you get the consistency with this doctor that I feel I have with mine. Like you I find telephone appointments challenging especially when I don't know who I am speaking to, but I am now happy to have telephone appointments with my consultant because I have that consistency and we have built up a rapport and that makes a big difference.
 
Hi Lucy - from the beginning all those years ago I have suspected that you were not really T2. I had to wait 8 years for a diagnosis of T1, due to a telephone diagnosis of T2 by a DSN who had never met me in person and was based solely on my age. It was a huge relief to be properly diagnosed by someone knowledgeable. So I know how you feel.

It will open so many doors for you and I think you will find that you are treated with more respect and your issues will be taken seriously from now on. It shouldn't be like that, T2s deserve the same treatment, but in my experience frequently don't get it.

So have a little celebration along with celebrating your birthday!
 
I read your thread title and guessed your news @Lucyr and great news it is 🙂 At last you have an answer😎
 
PattiEvans said:
So have a little celebration along with celebrating your birthday!
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I’m going to have some more birthday cake in celebration!
Inka said:
I read your thread title and guessed your news @Lucyr and great news it is 🙂 At last you have an answer😎
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Yeah, I’m happy with my unofficial diagnosis being “a unique case” but changing my official one to T1 will help.

For those who have done a DAFNE-like course, how did you handle this with work? Were you able to arrange some kind of sick leave or did you need to use holiday? My holiday year ends in December so I’m running a bit low if I hear about the course this year.
 
Lucyr said:
I’m going to have some more birthday cake in celebration!

Yeah, I’m happy with my unofficial diagnosis being “a unique case” but changing my official one to T1 will help.

For those who have done a DAFNE-like course, how did you handle this with work? Were you able to arrange some kind of sick leave or did you need to use holiday? My holiday year ends in December so I’m running a bit low if I hear about the course this year.
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I've just done our DAFNE equivalent here in Bradford called CHOC's they offered to send a support letter to my employer we did discuss it at work briefly they never said no but I ended up using leave I could have probably done some combination of leave/special leave depending on what is available.
 
digihat said:
I've just done our DAFNE equivalent here in Bradford called CHOC's they offered to send a support letter to my employer we did discuss it at work briefly they never said no but I ended up using leave I could have probably done some combination of leave/special leave depending on what is available.
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I’ll see when it comes through, I imagine it could possibly be next year now and my holiday allowance resets in January which would reduce the problem. I do have a bit it’s just that I only have 5 days left to take this year and haven’t booked any time at Christmas off yet.

Got the letter from the doctor confirming everything today, nice to see it in print and very efficient on the letter writing.
 
Oh wow! What brilliant news @Lucyr

I was so disappointed for you when after all the runaround with your cPeptide checks they eventually just shrugged and said, “dunno!”

Great to hear that someone has finally seem sense a put your tick in a far more appropriate box - even if it’s not a 100% classic presentation.

The more I hear, the more convinced I am that there are lots of grey areas between the types where people find themselves. It’s a complex condition, and there are some very fuzzy edges to those rigid “boxes”!
 
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