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8 years of insulin but not diabetic!!! Wrong diagnosis

N

Nondiabetic?

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3
Hello,

I hope you're all well.

I'd be ever so grateful if anybody could share any knowlege about being diagnosed T1D when not. I was diagnosed eight years ago and have taken insulin four times a day since. Have almost daily hypos which have had huge impact on my life. I stopped my insulin three months ago and have never felt better..

Is this possible?

Thanks,

D
 
Nondiabetic? said:
Hello,

I hope you're all well.

I'd be ever so grateful if anybody could share any knowlege about being diagnosed T1D when not. I was diagnosed eight years ago and have taken insulin four times a day since. Have almost daily hypos which have had huge impact on my life. I stopped my insulin three months ago and have never felt better..

Is this possible?

Thanks,

D
Click to expand...


Have never had a HbaC1 above 36 if i remember correctly and was in intensive care having had a seizure and fallen into a comma with insulin overdose three months ago however, had only taken as prescribed. I've lost my career, my friends, my relationship, my mental health (doctors state that my panic attacks are the cause of my hypos and not a result of) i barely go a day without at least one hypo, can't remember the last time i slept through the night without waking up for something to eat as bloods are low.

Was diagnosed on 24/12/2013 after i attended A&E due to three days of vomiting and feeling close to death. Was told almost immediately that i wasT1D (34yr old) and have been on insulin since. Approximately 60 hospitalisations since in ICU/HDU with DKA , high ketones but bg of 1 or 2, never been above seven or eight when having DKA episode. Have spent three Chrismasses in hospital out of seven.
When i suggest this to family they won't believe me due to the confusion i often suffer due to low blood sugars and the amount of health professionals I've seen since diagnoses and not one have looked at this possibility. I'm thinking of going private to double check but don't have much money since i can't work anymore so want to be sure i'm not just experiencing some sort of denial
Three months with no insulin though and 36 HbAC1 and no hypos. It's just strange to me.
Sorry for waffling on peeps.

Xx
 
Did you have regular appointments with an endo during all these years? Did no-one suggest reducing insulin doses to stop having so many hypos and hospitalizations?
 
Hi @Nondiabetic? Welcome to the most knowledgeable diabetes forum on this planet!
Your experience is dreadful and having hypoglycaemic episodes is bad enough in itself is awful and having to try and understand why it is happening, and all your medical team, haven't a clue.
I know that is not what you're looking for, but I have been through similar, it took over a decade to get a true diagnosis, and only because I found a specialist endocrinologist who saved my life.
My Hba1c levels are normal for the past decade and maybe before, my latest is 37.
But I've had a rough time since lockdown.
And if I eat the wrong foods, I will go hypo.
I am lactose intolerant, have been since child and for my diagnosis, I have found out that I am totally carb intolerant.
I produce too much insulin, on my secondary insulin response.

I'm not saying that you have this condition, if you have an endocrinologist talk to him or her about further investigation into why you are going hypo, without being on insulin, are you on other meds?
 
Nondiabetic? said:
Approximately 60 hospitalisations since in ICU/HDU with DKA , high ketones but bg of 1 or 2, never been above seven or eight when having DKA episode.
Click to expand...

I think you need specialist medical advice. DKAs are normally associated with high blood sugars so it sounds like there may be something strange going on. (Disclaimer, I am not a doctor). When is your next appointment with a diabetic clinic/endocrinologist?

We did have one poster who got a T2 diagnosis after ten (?) years of a T1 one so it isn't completely unknown, and people with slow onset T1 sometimes can go years without needing insulin while in their honeymoon period, though I think 8 years is a stretch.
 
Nondiabetic? said:
Have never had a HbaC1 above 36 if i remember correctly and was in intensive care having had a seizure and fallen into a comma with insulin overdose three months ago however, had only taken as prescribed. I've lost my career, my friends, my relationship, my mental health (doctors state that my panic attacks are the cause of my hypos and not a result of) i barely go a day without at least one hypo, can't remember the last time i slept through the night without waking up for something to eat as bloods are low.

Was diagnosed on 24/12/2013 after i attended A&E due to three days of vomiting and feeling close to death. Was told almost immediately that i wasT1D (34yr old) and have been on insulin since. Approximately 60 hospitalisations since in ICU/HDU with DKA , high ketones but bg of 1 or 2, never been above seven or eight when having DKA episode. Have spent three Chrismasses in hospital out of seven.
When i suggest this to family they won't believe me due to the confusion i often suffer due to low blood sugars and the amount of health professionals I've seen since diagnoses and not one have looked at this possibility. I'm thinking of going private to double check but don't have much money since i can't work anymore so want to be sure i'm not just experiencing some sort of denial
Three months with no insulin though and 36 HbAC1 and no hypos. It's just strange to me.
Sorry for waffling on peeps.

Xx
Click to expand...
What country are you in?
 
You've had an awful time. Hypo's aren't nice, and especially when your blood sugar goes down to 1 or 2.

When you were taking insulin, which one were you on, and were you adjusting the dose with carb counting? Or were you taking the same amount every day?
 
Yes - the best man at my sister's wedding was diagnosed as type 1 and put on insulin.
He lost his job, his HGV licence, his home and his family, and many friends. At any social occasion where food and drink was served he would go hypo and become - erratic.
After decades, his consultant retired and after his first test done for a new consultant he was contacted urgently and told to discontinue the insulin.
He came to see them, very distressed, poured his heart out about everything that had gone on, then he left and has not been seen since.
 
Insulin is a life saver, but it can also be very dangerous, as it is so very easy to overdose. One should therefore always be very aware of the impact of insulin on one's body.
 
Nondiabetic? said:
Hello,

I hope you're all well.

I'd be ever so grateful if anybody could share any knowlege about being diagnosed T1D when not. I was diagnosed eight years ago and have taken insulin four times a day since. Have almost daily hypos which have had huge impact on my life. I stopped my insulin three months ago and have never felt better..

Is this possible?

Thanks,

D
Click to expand...
What an awful experience. Any hypos are dangerous and you've had daily hypos. You should ask for a c-peptide test to see how much insulin you are producing just as a confirmation. Your HbA1c of 36 without medication is non-diabetic.
They should have completed a c-peptide test to see how much insulin you were producing before starting you on insulin.
Blood glucose needs to be high (above 13 mol/l for an extended period of time) and be ill for your ketones not to clear away for DKA where your ketones go above 25 + mmol/l and your blood pH changes. I've recently had Covid and the hospital medical team panicked when my ketones were 3 and they wanted to attach an insulin bag to me. I explained that my blood glucose was normal at 5.1 so it wasn't an issue it was just nutritional ketosis. Funny I had to tell them that. Looks like you've had the same experience.
 
Last edited:
ert said:
They should have completed a c-peptide test to see how much insulin you were producing before starting you on insulin.
Blood glucose needs to be high (above 13 mol/l for an extended period of time) and be ill for your ketones not to clear away for DKA where your ketones go above 25 + mmol/l and your blood pH changes. I've recently had Covid and the hospital medical team panicked when my ketones were 3 and they wanted to attach an insulin bag to me. I explained that my blood glucose was normal at 5.1 so it wasn't an issue it was just nutritional ketosis. Funny I had to tell them that. Looks like you've had the same experience.
Click to expand...

Was watching this recently - ketones is the first issue covered ...
 
Nondiabetic? said:
Hiya,
I live in England, Liverpool.

Xx
Click to expand...

There are some really good endocrinologists in the Merseyside and Manchester area.
Get your GP to get a referral to one, to get the tests necessary for a true diagnosis.
 
ert said:
They should have completed a c-peptide test to see how much insulin you were producing before starting you on insulin.
Click to expand...
Where do you get this idea from.
It would be useful but I don’t believe it is standard procedure now, let aloneb8 years ago.
My understanding is that the c-peptide test is expensive and not performed at every testing site so it is often not given.
 
In Response said:
Where do you get this idea from.
It would be useful but I don’t believe it is standard procedure now, let aloneb8 years ago.
My understanding is that the c-peptide test is expensive and not performed at every testing site so it is often not given.
Click to expand...

If you have time, go to blogs and find @kokhongw blogs, the relationship between insulin and type two, and the science, tests about hyperinsulinaemia and what happens with insulin resistance and circulating insulin.

Those with insulin resistance and have been given meds that increase the initial response to food, they would be better off if the doctors did insulin tests.
Understanding this is better medicine than anything the NHS can throw at you.
 
In Response said:
Where do you get this idea from.
It would be useful but I don’t believe it is standard procedure now, let aloneb8 years ago.
My understanding is that the c-peptide test is expensive and not performed at every testing site so it is often not given.
Click to expand...
It's standard procedure currently when you are referred to a specialist to check the type of diabetes you have on the NHS, on diagnosis, if you fit the criteria. It's just a blood test that costs as little as £10. It started in 1973 as a method to determine beta-cell function, not that it was widely used back then.
https://www.exeter.ac.uk/news/featurednews/title_707155_en.html
 
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