Reappearance of type 1

todmum

Member
Messages
13
My son was diagnosed type 1 when he was 15, 6 years ago, he was on insulin for 6 months then for no reason that the doctors could see, my son was suddenly cured, yes I know type 1 can't be cured so they put it down to honeymoon period! Then after over a year they were baffled and basically signed him off! They tested him twice for type 2 and said no it was definately type 1! We didn't get answers but just took it as a miracle! Then 6 years later, 4 weeks ago he had symptoms again and went doctors and then hospital and they said he is type 1 again, devastating for him and us but still don't know what happened, it can't be a 6 year honeymoon ! Does anyone else know anything or experienced anything like it before. Thank you
 

catapillar

Well-Known Member
Messages
3,390
Type of diabetes
Type 1
Treatment type
Insulin
A long honeymoon and a strong honeymoon where you can stop taking insulin for a while is more common in type 1s diagnosed as adults - often referred to as type 1.5 or LADA. With LADAs the no insulin period can be in the years.

Usually someone diagnosed LADA and not taking insulin will be advised to continue to carefully monitor blood sugar and will continue to have hba1c tests so they can check whether insulin needs to be recommended.

If your son had his type 1 status confirmed with a GAD test it wasn't a miricle, it was honeymoon and it was always inevitable he was going to require insulin again at some point.
 

todmum

Member
Messages
13
A long honeymoon and a strong honeymoon where you can stop taking insulin for a while is more common in type 1s diagnosed as adults - often referred to as type 1.5 or LADA. With LADAs the no insulin period can be in the years.

Usually someone diagnosed LADA and not taking insulin will be advised to continue to carefully monitor blood sugar and will continue to have hba1c tests so they can check whether insulin needs to be recommended.

If your son had his type 1 status confirmed with a GAD test it wasn't a miricle, it was honeymoon and it was always inevitable he was going to require insulin again at some point.
But is 6 years the longest honeymoon ever!
 

catapillar

Well-Known Member
Messages
3,390
Type of diabetes
Type 1
Treatment type
Insulin
But is 6 years the longest honeymoon ever!
It's an impressively long honeymoon, but it probably isn't the longest honeymoon ever. And no matter how long it is, it is just a honeymoon.
 

azure

Expert
Messages
9,780
Type of diabetes
Type 1
Treatment type
Pump
Could it be one of the less common types of diabetes? MODY maybe?

I think there's another type too, but I cant remember the precise name.

Edited to add - transient neo natal diabetes but that usually occurs earlier and then comes back, as I understand it.
 

todmum

Member
Messages
13
I just wish that I had some answers years ago, but because it all happened so suddenly and we came to terms with it and then whoosh it had gone again! We were more just happy it had gone rather than asking for answers, now it's come back even the doctors are baffled! And he was under children's before and now it's adults, it's so different, and I feel like I have to step back a bit because he is an adult now ! We have diabetic clinic at hospital Monday so maybe they might have some answers x
 

todmum

Member
Messages
13
Had quite a good meeting with the diabetic nurse today ! Gave us new meter that does ketones as well and a better pen! Also had blood test as I asked if it was definately type 1, I have always had it in my head that they have misdiagnosed and it was type 2, so to put my mind at rest she has given him blood test to be 100% sure! He had already had his hbac1 done apparently when he went into hospital and it was 8.6, but apparently they don't do it in percentage now, we are still working in old terms and apparently they changed that in 2010! She went through a lot of bits and pieces and a lot fell into place, back to basics! Nice to know that we have email and phone number of the nurse and she said we can pop in there if we need anything urgently or run out of anything, or if we have a problem, thought going from child to adult would be terrible but seems ok........so far!
 

Soplewis12

Well-Known Member
Messages
368
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
Grumpy People
My son was diagnosed type 1 when he was 15, 6 years ago, he was on insulin for 6 months then for no reason that the doctors could see, my son was suddenly cured, yes I know type 1 can't be cured so they put it down to honeymoon period! Then after over a year they were baffled and basically signed him off! They tested him twice for type 2 and said no it was definately type 1! We didn't get answers but just took it as a miracle! Then 6 years later, 4 weeks ago he had symptoms again and went doctors and then hospital and they said he is type 1 again, devastating for him and us but still don't know what happened, it can't be a 6 year honeymoon ! Does anyone else know anything or experienced anything like it before. Thank you
Hi, I am type 1, 27 years now & diagnosed @ 21. I first showed symptoms in the April but didnt know about diabetes then. The symptoms disappeared but recurred in December. Started insulin in the December, the honeymoon period was explained to me & I was told to expect my doses to have to be increased, this never happened..... I was also told that they thought that I was still producing some insulin myself. Best of luck for your son & I'm sure he'll be fine soon.
 

todmum

Member
Messages
13
All very weird, test results showed no antibodies so they are saying they think he is type 1b, which is classed as not autoimmune but his pancreas just doesn't want to work, hence the long honeymoon!
 
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azure

Expert
Messages
9,780
Type of diabetes
Type 1
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At least you have more information @todmum Not knowing can be a stress in itself.

Is your son back on insulin now? Are his sugars better? I hope he's coping ok.