New diagnosis/confused Mum!!

[pearceam]

Hello everyone.

I was diagnosed type 1 6 years ago. No other diabetes in the family.

Last week my mum had a fasting glucose after not feeling well, (known B12 deficient) and it was 18. Her Hba1c was then 108!!!! She was admitted and they've started her on insulin.

The consultant told us because of her age (52) type 1 is unusual and that they'd get some more tests done as it might be some other kind (I was only aware of 1/2/3) and she doesn't fit the usual criteria for type 2....

Just wondered if there is any other late diagnosed type 1s or other types out there???

Thanks!

Amy and her Mum

 

[db89]

Hello

Did the consultant say what they thought it might be other than not fitting type 1 or 2? Are the test for antibodies and c-peptide as I think these help them to diagnose?

There is apparently a Type 1.5 otherwise known as LADA which I've read about on this site but no idea if this would fit. http://www.diabetes.co.uk/diabetes_lada.html

Hopefully you get the test results back quickly and your Mum can get a more confident diagnosis from her team.

 

[azure]

@pearceam Yes, there are quite a few Type 1s here who,were diagnosed in later adulthood. Tagging a few @urbanracer @Kristin251 but there are quite a few more. I think there was a thread on it recently.

Well, age at diagnosis anyway:
http://www.diabetes.co.uk/forum/threads/what-age-were-you-diagnosed-type-1.115725/#post-1375476

Perhaps the other diabetes type was MODY? That is, a genetic type.

I hope your mum's feeling ok.

Edited to add that a recent study showed that Type 1 was diagnosed pretty evenly across the whole age range, so it's good to not rule it out.

 

[ME_Valentijn]

The consultant told us because of her age (52) type 1 is unusual and that they'd get some more tests done as it might be some other kind (I was only aware of 1/2/3) and she doesn't fit the usual criteria for type 2....

There was some research in the past 5-10 years which showed that most new cases of Type 1 are now in adults. My fiance got type 1 at around age 40, though he had a LADA onset with slower autoimmune destruction of the insulin-producing cells.

Most adults with a new case of diabetes are still going to be Type 2, simply because Type 2 is a lot more common. But around 10-20% of new cases initially diagnosed as Type 2 are going to ultimately be diagnosed as Type 1 or 1.5.

 

[Daibell]

T1 is far more common than the medics realise. I was diagnosed with db at age 60 but told it was T2. Now 13 years later I know it's T1 (LADA/T1.5) and not T2 and have been on insulin for several years. I've always been slim and that is one clue to the T1 diagnosis due to the body burning fat to get energy as there is not enough natural insulin to use the carbs. A c-peptide test is one way of helping with the correct diagnosis.

 

[pearceam]

Anyone ever heard of a misdiagnosed type 1? Such as going from injections initially and then changing to tablets/diet control after the tests come back?

 

[urbanracer]

Yes, I was 54 at the point of diagnosis although I know from what my GP told me that my blood glucose had been high(ish) for about 3years prior because I'd had tests for other things.

Where I live, the initial diagnosis for adults isn't very scientific - tall and slim equals T1, overweight equals T2. There was some discussion as the GP's diabetes nurse was convinced I was a T2, (for no medical or scientific reason). About 1 year in, a junior doctor at the endocrinology department ordered more tests, where the high presence of GAD antibodies (and thus T1) was confirmed.

So it is possible to misdiagnose before the full tests are done but presenting with the classic symptoms of rapid uncontrolled weight loss, ketones in urine and nocturnal polyuria (weeing a lot at night) are usually considered to be dead giveaways.

 

[lynnhan]

Hello everyone.

I was diagnosed type 1 6 years ago. No other diabetes in the family.

Last week my mum had a fasting glucose after not feeling well, (known B12 deficient) and it was 18. Her Hba1c was then 108!!!! She was admitted and they've started her on insulin.

The consultant told us because of her age (52) type 1 is unusual and that they'd get some more tests done as it might be some other kind (I was only aware of 1/2/3) and she doesn't fit the usual criteria for type 2....

Just wondered if there is any other late diagnosed type 1s or other types out there???

Thanks!

Amy and her Mum

I know people who have been diagnosed type 1 after the menopause, its usually type 2, but some people are diagnosed type1, I'm sure she'll soon feel better than she has in ages when she's under control. Good luck

 

[pwzero]

Anyone ever heard of a misdiagnosed type 1? Such as going from injections initially and then changing to tablets/diet control after the tests come back?

Yes. My brother in law was misdiagnosed as T1 for around 30 years. Now being treated as T2 and the difference in his health is unbelievable.

 

[Resurgam]

A good friend of my brother in law was misdiagnosed as Type 1 and was recently told to stop taking insulin after many years. Best Christmas present ever, he said.

 

[pearceam]

Yes. My brother in law was misdiagnosed as T1 for around 30 years. Now being treated as T2 and the difference in his health is unbelievable.

Wow! 30 years.... must be difficult to learn how to not be type 1 after all those years!

 

[pearceam]

A good friend of my brother in law was misdiagnosed as Type 1 and was recently told to stop taking insulin after many years. Best Christmas present ever, he said.

I bet!! I think we're all writing to santa for that Christmas present!

 

[carolmcewan]

I was 32 when I was diagnosed Type 1, a similar age in which my Dad was diagnosed T1 as well. My poor sister was only 2 years old though. My Mum has recently been diagnosed T2 in her 70s. Looks like it's pretty hereditary in our family!

I wonder if your Mum might have had undiagnosed diabetes for a while and that's why her blood sugar was so high. She must have felt awful. I hope she's starting to feel better alreafy with treatment/diet. It must be quite a shock to her but she's lucky to have you help her as it can be quite confusing at first.

I think I had it a while before I asked for a test but when I became thirsty and lethargic all the time I just knew.
Funnily enough my GP said to me when I asked for a test, 'You don't look diabetic'. I think he was just trying to reassure me before the results came back but I looked at him like he had a screw loose. ☺

 

[KezG]

Anyone ever heard of a misdiagnosed type 1? Such as going from injections initially and then changing to tablets/diet control after the tests come back?

I was diagnosed in Nov16 as suspected type 1 and treated as such. I am 49 yrs old and not overweight I had lost some weight prior to diagnosis. My DSN and her team were sure that I was type 1 until my Gad antibodies and C-peptide test results came back. This confirmed type 2. At the time my G.P. prescribed Metformin and said that they'd likely not do much as my glucose levels were so high. A few days later I was given insulin.
It may be that your mum is being given insulin because it works more rapidly to deal with a glucose issue.
Only time and test results will tell.. wishing you and your mum well.

 

[sweetbloodsher]

Hi, Amy. I was diagnosed a year and nine months ago at the ripe old age of 63. Everyone was shocked and I was, in fact, misdiagnosed a couple of times as a type 2 or 1.5. I have had rheumatoid arthritis since my 20's, and so, an autoimmune problem such as type 1, may be linked to that. I was six week recovering from knee replacement surgery, so my theory is that my immune problem was triggered, and thus, the crazy late onset of T1D. Best of luck to your mom.

 

[sweetbloodsher]

My understanding of LADA is that the onset is not as sudden as type 1; it's more gradual like type 2. Also, not typical to have DKA. Don't know if Amy's mother had that.

 

[MrXile]

Anyone ever heard of a misdiagnosed type 1? Such as going from injections initially and then changing to tablets/diet control after the tests come back?

Well, that's me right there.
Was initially diagnosed with type 1 on Jan 5th this year. My blood tests (the expensive one in told) came back and I was told my pancreas is working normally. So I'm currently being weened off all insulin and been given metformin. (2000mg daily) to help kickstart my body doing what it should.

So until we see how I go with this, I could be type 2, or none at all. Or...I could be 1.5 and need some bg insulin. Time will tell. Baffling time.

 

[MrXile]

Hello everyone.

I was diagnosed type 1 6 years ago. No other diabetes in the family.

Last week my mum had a fasting glucose after not feeling well, (known B12 deficient) and it was 18. Her Hba1c was then 108!!!! She was admitted and they've started her on insulin.

The consultant told us because of her age (52) type 1 is unusual and that they'd get some more tests done as it might be some other kind (I was only aware of 1/2/3) and she doesn't fit the usual criteria for type 2....

Just wondered if there is any other late diagnosed type 1s or other types out there???

Thanks!

Amy and her Mum

I meant to also say Hi and welcome to the forum, and that goes to your mother too!

Mike

 

[mist]

Alcohol killed my pancreas and caused my diabetes, or it might have been the radiation from my cancer treatment, so the doctors say.

I think we will soon discover that more and more things can cause diabetes, I wouldn't be surprised if the risk increases with age.

Who knows, hopefully the docs can get to the bottom of it.

Welcome to the crazy train btw.

 

[pearceam]

My understanding of LADA is that the onset is not as sudden as type 1; it's more gradual like type 2. Also, not typical to have DKA. Don't know if Amy's mother had that.

No DKA as we saw the signs early enough to catch it before it got there thank goodness.

I think it's typical type 1 due to how quickly it all seem to appear but we'll find out soon enough. Just waiting for more tests (another 5 weeks to wait...!)