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Thank goodness for the forum!

L

LornaFarrell

Well-Known Member
Messages
72
I’ve just had a dietician appointment, having been diagnosed about 4 months ago. When I was diagnosed in A&E I was told T1, then two weeks later I saw a consultant who was very dismissive and basically felt it would be T2 based purely on my size. He did blood tests and a week later I was told by a nurse that not all the results were in but the consultant felt so far it looked like T2. A week after that (when I asked) I was told the results were “all normal”. I never heard anything else, nobody ever called to give me results or tell me what my diagnosis was.

Today the dietician pulled up my notes and I got her to have a look. Positive for GAD antibodies, even that consultant had to admit T1, it’s right there in my notes. But nobody told me, and I wasn’t even meant to have today’s appointment so I wouldn’t have found out for another three months at least. I didn’t have their phone number or any way to contact anyone.

Luckily for me, I found this forum in those three months. I did my own research and all the symptoms pointed to T1, plus a specialist consultant had said T1 so I decided to continue treating as T1 since the regime they had me on really wasn’t working. You told me about an online course in carb counting and answered all my questions. My control isn’t as good as I would like (Hba1c is 8.7, down from 10.3 three months ago) but I’m still tweaking things and getting better all the time.

I honestly believe that without this forum, if I had just believed what I was told and followed the regime they gave me, I would have ended up back in hospital.

So, Thank you!
 
LornaFarrell said:
I’ve just had a dietician appointment, having been diagnosed about 4 months ago. When I was diagnosed in A&E I was told T1, then two weeks later I saw a consultant who was very dismissive and basically felt it would be T2 based purely on my size. He did blood tests and a week later I was told by a nurse that not all the results were in but the consultant felt so far it looked like T2. A week after that (when I asked) I was told the results were “all normal”. I never heard anything else, nobody ever called to give me results or tell me what my diagnosis was.

Today the dietician pulled up my notes and I got her to have a look. Positive for GAD antibodies, even that consultant had to admit T1, it’s right there in my notes. But nobody told me, and I wasn’t even meant to have today’s appointment so I wouldn’t have found out for another three months at least. I didn’t have their phone number or any way to contact anyone.

Luckily for me, I found this forum in those three months. I did my own research and all the symptoms pointed to T1, plus a specialist consultant had said T1 so I decided to continue treating as T1 since the regime they had me on really wasn’t working. You told me about an online course in carb counting and answered all my questions. My control isn’t as good as I would like (Hba1c is 8.7, down from 10.3 three months ago) but I’m still tweaking things and getting better all the time.

I honestly believe that without this forum, if I had just believed what I was told and followed the regime they gave me, I would have ended up back in hospital.

So, Thank you!
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Are you on insulin now?
 
Mind my language but it's a frigging nightmare...
Wish you well and stick with the diligence as no one else appears to be doing so.
 
You can update your profile to show T1 then! Sorry it's been such an awful journey so far.
 
Hi @LornaFarrell, You survived the incompetence of individuals and the system! And whilst you should not have had to experience that, your persistence is a characteristic which will serve you well in managing your diabetes. (once you get over the whole inanity of the individuals involved)!
Please ask away as you continue your journey. Of course managing diabetes is more complex than tuning a radio or TV but collectively many of us have made enough mistakes along the 'T 1 journey', and learned from them to help others avoid them !!
Best Wishes, fellow warrior !!
 
What a shock and how scary , don’t feel too bad of your HbA1c it is also dangerous to get too low and type 1 is a much more demanding line to walk as the insulin can drag you far too low
 
ickihun said:
Are you on insulin now?
Click to expand...

Yes, when I was diagnosed in A&E I narrowly avoided DKA (ketones were 3.7) so I was put on insulin straight away. But they wanted me taking set doses per meal, with no guidance on diet other than “avoid cake.” So I was going very high at some meals (over 30, or so high the meter wouldn’t give a reading) and hypo after others with no way to even attempt to control the situation.
 
LornaFarrell said:
Yes, when I was diagnosed in A&E I narrowly avoided DKA (ketones were 3.7) so I was put on insulin straight away. But they wanted me taking set doses per meal, with no guidance on diet other than “avoid cake.” So I was going very high at some meals (over 30, or so high the meter wouldn’t give a reading) and hypo after others with no way to even attempt to control the situation.
Click to expand...
It must have been a scary time. :(
Luckily now you know alot more.
We are the lucky ones. Forum has opened my eyes and confirmed some of my suspicions along the way. An excellent conversational platform in which to share experiences and worries.
 
LornaFarrell said:
My control isn’t as good as I would like (Hba1c is 8.7, down from 10.3 three months ago)
Click to expand...
Is that without medication? Glad to hear you've got your head screwed on the right way, it seems you have to be one step ahead of the experts, all the time.
 
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