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Cured of T1D after a decade of daily insulin injections

M

Mosley1979

Newbie
Messages
4
Type of diabetes
Other
Treatment type
Insulin
Dr - No, you are definitely not T1D, or any kind of diabetic.
Me - But I thought T1D wasn't curable?
Dr - that's right
Me - So I was never T1D?
Dr - I can't say
Me - but if I don't have it, and it's not curable, then surely I never had it?
Dr - I can't be sure.
Me - huh?
Dr - I suppose that is one way of looking at it. But on the bright side. You are perfectly fit and well and we can discharge you today.
Me - Sorry, what? So for a decade I've suffered constant hypos, injected myself with insulin day in day out, been in hospital continuously with Dka but today you're telling me that it's all been one big mistake and are sending me on my way?
Dr - yes, very lucky lady.
 
What are your blood sugar levels without insulin for food today? I'd be testing a lot over the next few days, and getting a second opinion on what you've been told.

What led to the dr saying you weren't diabetic? What was he basing it on? Was it a hospital consultant or gp?

Edited to add - apologies I should have said welcome to the forum @Mosley1979
 
Mosley1979 said:
Dr - No, you are definitely not T1D, or any kind of diabetic.
Me - But I thought T1D wasn't curable?
Dr - that's right
Me - So I was never T1D?
Dr - I can't say
Me - but if I don't have it, and it's not curable, then surely I never had it?
Dr - I can't be sure.
Me - huh?
Dr - I suppose that is one way of looking at it. But on the bright side. You are perfectly fit and well and we can discharge you today.
Me - Sorry, what? So for a decade I've suffered constant hypos, injected myself with insulin day in day out, been in hospital continuously with Dka but today you're telling me that it's all been one big mistake and are sending me on my way?
Dr - yes, very lucky lady.
Click to expand...
What a horror show you've had to live through. Did they ever take a c-peptide test to see what insulin your body was actually producing? If not, you need one now to confirm your diagnosis or non-diagnosis - something to ask your consultant. It was always my dream to be told there was some sort of mistake and I was not T1DM.
 
Last edited:
Welcome to the forums @Mosley1979

Googling suggests that DKA can occur in non diabetics in very rare cases, but there is usually something else going on.

And cpeptide testing of T1 patients in hospital showed that a significant few were either T2 or MODY, so it's not impossible to be misdiagnosed
pubmed.ncbi.nlm.nih.gov

Impact of routine clinic measurement of serum C-peptide in people with a clinician-diagnosis of type 1 diabetes - PubMed

Serum C-peptide testing can easily be incorporated into an out-patient clinic setting and could be a cost-effective intervention. C-peptide testing should be strongly considered in individuals with a clinician-diagnosis of type 1 diabetes of at least 3 years duration.
pubmed.ncbi.nlm.nih.gov pubmed.ncbi.nlm.nih.gov

But I'd really want a second opinion as to the cause of the DKA if it isn't T1....

Not sure whether to give you a hug for the ten years of unnecessary insulin or a winner for the fact that you no longer have to take it? Once more, welcome, and do please update us if/when you find out what the actual cause of your DKAs were.
 
searley said:
DKA only come about due to a lack of insulin so if you have had DKA you MUST be diabetic
Click to expand...
Hiya,
Thanks for your reply.
That's what you'd think but I think it's more likely that I never had Dka but some other kind of ketoacidosjs (Id never heard of Ketosis etc till I was told I had dka so didn't know there was any other explanation). Apparently there's starvation ketonacidosis and annoyingly had a call from the Dr today to tell me not to take the tablets he'd just prescribed me as he happened to notice that an ECG I had in 2021 when in hospital with (apparently) DKA had changes on it and should have been dealt with but it fell through the net somehow so I need to go to hospital for a follow up. I remember at the time telling the nurses I felt like I was having a heart attack and couldn't breath but was dismissed. I've had a little Google, worst thing I know, and there's something called respiratory ketoacidosis so I'm wondering if it could have been something like that on that occasion? I don't know, it's all a bit of a mess to be honest.
I really appreciate you giving me your time to help me think of different ways to look at working this out, it doesn't half help to get people's opinions (especially as you're the real experts) x
 
It won't let me post my replies for some reason, apologies about this, I'll keep trying. X
I feel ever so rude here not replying.
 
Hiya Ellie,
Thank you ☺️.

I'm really sorry, I should have added that it was a year ago that I stopped my insulin due to non stop hypos.

I got a new specialist who I begged and pleaded to to help me and try to look into my diabetes a bit more as I couldn't cope any more with the almost daily hypos.

Previous Drs had just been dismissing me, telling me I was not monitoring my diabetes correctly,, or that it was my mental health and related to panic attacks putting me on anxiety and anti-phsychotics, one occasion when I had a seizure and went unconscious the hospital wouldn't discharge me until the mental health team had assessed me as they believed I'd took an insulin overdose purposely (I hadn't) so it was amazing to finally be listened to. But I had no idea that it was going to come back with no diabetes at all. I thought it was going to be that I was a different kind.
She got my notes from time of diagnosis and all the cpeptide and gad tests they did came back saying I did not have diabetes but for some reason I was diagnosed anyway.
Obviously the new Dr apologised but as she said, she wasn't there so can't comment on why they decided to ignore my test results.

Last time I had DKA I arrived at A&E and told a nurse walking past my ketones were 9 and bm 1 and I needed help immediately as was going to lose consciousness. She gave no reaction, carried on walking and i overheard her tell her colleague I had them the wrong way around and was probably trying to push in so I repeated my finger prick and showed her my machine and was thankfully given somewhere to sit down and an energy drink.

I've been lost in surfing the Web like mad and there's a few different reasons why ketoacidosis happens, I just need to see if the hospital will help me work out what as the Dr was keen to discharge me today.

I
don't know if it's related but I saw my GP this afternoon and as I got home he called me to tell me not to take the tablets he'd just prescribed me as he happened to notice that an ECG I had in 2021 when in hospital with (apparently) DKA had changes on it and should have been dealt with but it fell through the net somehow so he'd rang the hospital and they were expecting me to do a repeat. I remember at the time telling the nurses I felt like I was having a heart attack and couldn't breath but was dismissed. I've found all sorts of stuff online , worst thing to do i know so I've probably been a bit silly, but there's something called respiratory ketoacidosis so I'm wondering if it could have been something like that on that occasion. There's also starvation ketoacidosis. I must have been in hospital and treated for dka a minimum of 20 times. I was diagnosed on Christmas eve and the next two Christmas weeks were coincidentally spent in hospital.

It's all a bit of a mess.

Thank you ever so much for your time Ella, it's really comforting to have someone, who is one of the real experts, take notice and give advice.

Xx
 
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