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Back with bad news

J

JennyP

Active Member
Messages
43
Hi all, I am back here with some bad news. My T2 changed. I am now T3c. My pancreas was discovered atrophied on a CT Scan. This finally told my GP what was happening and Creon was prescribed. Which was amazing …dr had not believed me. And now I was “ free” of the diarrhoea.

But he was so slow to get my BGL under control. Now my new GP is on the case but is lost too. My numbers live in the teens. Finally after two years I am seeing a Diabetes Educator. I now am on two insulins. I feel so depressed.

I have had symptoms all my life. Now I am on extra insulin I seem to be worse. And no one has explained how to dose it. Nothing is working to bring my numbers down.

I hope everyone is doing better than me.

J
 
Can you ask for a referral to an endocrinologist?
Basically, your diabetes is treated a s T1, because like T1's you don't produce enough insulin.
With insulin dependent T3C it makes complete sense to be seen by an endo.
JennyP said:
Now I am on extra insulin I seem to be worse. And no one has explained how to dose it. Nothing is working to bring my numbers down.
Click to expand...
You may be eligible to follow a DAFNE course to learn about dosing. It is aimed at T1's, but for insulin dosing this doesn't make much of a difference.
 
I am wondering if you ever had T2 or whether your issue has always been (lack of) insulin production. No one would know without a c-peptide test.

If you were T1 I'd say that getting your numbers down is a question of getting your insulin right. That isn't easy, because where one person needs 200 units a day another might need only 10, so they have to titrate up slowly.

I agree with @Antje77 that you should ask for a referral to an endocrinologist. In my experience GPs are moderately clueless about T1, and T3c is rarer and therefore less likely to be understood.

Hopefully you are now prescribed a libre or dexcom continuous glucose monitor.

This teaching resource is for T1s, but it explains insulin dosing for people who don't make their own so may be useful for you

Bertie Diabetes

bertiediabetes.com bertiediabetes.com

Has anyone talked to you about hypos? (low blood sugar). A cgm will give you warning but most insulin users are at risk and it's best to always have some kind of sugar with you. (Speaking from personal experience, trying to find a sugar source while hypo and confused is no fun.)

At least now you have a correct diagnosis which will hopefully lead to the correct treatment.

Lots of virtual hugs from New Zealand.
 
Hi @JennyP
I am a well controlled type 1 of over 50 years and like you i am on 2 insulins.
I am well versed with feeling depressed as i have been on tablets for it for 20 years.
You have or will have 2 very important friends.
A CGM with which you can analyse your levels instantly.
Secondly Insulin and once you work out how it works and what it does along with your CGM you will begin to feel better.

Every single insulin user is different and it takes time to work out whats right for you.

The future is bright as there is so much tech available to help you get where you need to be.

Please be patient and i do realise its very easy for me to say but i'm just about to change one of my insulins through no fault of my own and i'm feeling anxious but i have confidence in the tech i've got at my disposal.

I wish you all the luck in the world

Tony
Old timer!
 
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