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Newly diagnosed Type 1. Have some questions

S

shellzzz

Newbie
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3
Hi,

Just received a hospital letter, stating that I am type 1 (they were trying to see if I was MODY or Type 1). My next hospital appointment with a diabetes specialist is in 6 months and the next time I will see my GP is in a month.

Just wondering what happens from here on... Could anyone share their experience?

Is it bad that I am waiting a month before I see my GP? And my GP doesn't really know about diabetes, so I am not sure what the appointment will be about. Who, then, will prescribe me insulin, work out my dosage and who will teach me about everything?

Also, I don't really understand my test results. It simply is a letter which labels me as TYPE 1 at the top and then the rest of the later states that I was sent for testing for anti-GAD antibodies and anti-pancreatic islet cell testing. No C-peptide testing. It says I was tested negative for anti-GAD and then it just goes into detail about my Hba1c, ketones, cholesterol and a tonne of abbreviates ie ALT etc, so I am not sure where the diagnosis comes from. I really want to talk to someone about it but I am not sure who to call?

It seems that I am quite stable right now, and I am on my 'honeymoon' period, with an AC1 of around 7%, as I have seen around the internet. So is it ok to just leave it for a month? I have exams so starting medication/ going to appointments may be difficult.

Thank you!
 
Welcome @shellzzz :)

If it was me, I'd phone the hospital or your GP (who should have been given information) and ask for more details. Write down your questions before you call and make sure you get the answers you need.

I would want to see a consultant sooner than 6 months, if it was me too.

What are your day to day blood test results like? ie what numbers?)
 
azure said:
Welcome @shellzzz :)

If it was me, I'd phone the hospital or your GP (who should have been given information) and ask for more details. Write down your questions before you call and make sure you get the answers you need.

I would want to see a consultant sooner than 6 months, if it was me too.

What are your day to day blood test results like? ie what numbers?)
Click to expand...

My peak last week was 9.7, today I am 7.2
 
shellzzz said:
My peak last week was 9.7, today I am 7.2
Click to expand...

Ok - those aren't awful numbers :)

How often do you test? Do you test before and two hours after your meals? (Not necessarily every meal, but sometimes)
 
azure said:
Ok - those aren't awful numbers :)

How often do you test? Do you test before and two hours after your meals? (Not necessarily every meal, but sometimes)
Click to expand...
I only test my fasting blood sugar every morning. Sometimes I neglect it (the diabetes nurse from my visit to the hospital mentioned that I don't have a need to test often).
 
shellzzz said:
I only test my fasting blood sugar every morning. Sometimes I neglect it (the diabetes nurse from my visit to the hospital mentioned that I don't have a need to test often).
Click to expand...

I would question that. If you don't know your blood sugar after meals, you could be spiking to a high number.

Adult onset Type 1/LADA can come on slowly, but things can change fast.

I suggest you try a few after meal tests if you're happy to do so - that is, testing your blood sugar just before you eat, then again 2 hours after the start of your meal. If you want to be thorough, you can do an inbetween test at 1 hour after the start of your meal.
 
The first thing I'd do though is get that letter explained to you so you know what it means, and can check you understand their thinking :)
 
I agree with @azure: you should push to see someone who understands TYPE 1 diabetes sooner. I emphasise the type as, in my experience, the local GP surgery and nurse have more experience with type 2 as it is more common.

I was diagnosed with Type 1 in my 30s. My diagnosis was not terrible (although there was room for improvement): I was seen by a consultant the day after my GP diagnosed diabetes. At this appointment, I was given insulin, testing strips, etc.

Looking back, I had been suffering from diabetes symptoms for nearly a month (the first GP I saw diagnosed UTI) and was grateful to start my insulin and stop the regular peeing. For you to have to wait at least this long for your first appointment seems wrong.
 
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