What is this “honeymoon period” people mention here?

[david4503]

I keep running into this term and haven’t got a clue what it is. It sounds like a good thing but I’m thinking I must have missed mine.

 

[Jaylee]

I keep running into this term and haven’t got a clue what it is. It sounds like a good thing but I’m thinking I must have missed mine.

Hi,

Basically as the pancreas stops production of insulin it does this “dying swan act?”
It splutters out insulin for a period that can last a while after diagnosis, which can cause random issues for an insulin user with the injected insulin onboard? (Hypos.) possibly not the best thing if one happens to be operating machinery at the time..

I was diagnosed as a child & prescribed porcine insulin. (1976.) In my distant memory, I’m not convinced I ever had one.
I don’t think everybody does?

 

[david4503]

Ah, okay, I see, sort of. I recall well the period when my beta cells were dying, before I was diagnosed, but I wouldn’t call it any kind of honeymoon. Even if I had been put on insulin earlier, it wouldn’t have been a honeymoon, a picnic, or anything I’d want to repeat (second honeymoon?). There must be more to it. Some people seem to talk about it like the good old days.

 

[Marie 2]

The honeymoon period is just when your pancreas keeps trying to make insulin in a type 1 until it finally can't anymore. It can last years. But commonly at the beginning it can make it difficult to learn what doses you need, because your BG levels can be erratic. It's also one of the reasons type 1's are often misdiagnosed because medications and lifestyle changes will help at first because you are still producing some insulin.

 

[Jaylee]

Ah, okay, I see, sort of. I recall well the period when my beta cells were dying, before I was diagnosed, but I wouldn’t call it any kind of honeymoon. Even if I had been put on insulin earlier, it wouldn’t have been a honeymoon, a picnic, or anything I’d want to repeat (second honeymoon?). There must be more to it. Some people seem to talk about it like the good old days.

Some folk spoke of a war like the good ‘ol daze.. None of it sounds like my idea of a good time.
Recently diagnosed people can have this issue.

when we’re you diagnosed?

 

[david4503]

1971. At least the diabetes didn’t arrive at the same time as disco. That would have been too much to handle.

 

[Jaylee]

1971. At least the diabetes didn’t arrive at the same time as disco. That would have been too much to handle.

Since you mention Disco. I can imagine drawing an analogy a little like rollerskating on an ice rink strewn with gravel..

It’s tricky enough with the basal I use..(Lantus.) seems to be more stable when it’s tailing off or in the hours it should have long since run out. On “paper,” HCPs got a different groove going on..

Good job I ain’t new to this game. The’d blame it on the boogie.

 

[EllieM]

I think some people have good honeymoons, where the extra insulin smooths out their levels and just leads to less insulin needed. whereas others just find it gives them unpredictable lows and highs?

I suspect it's more of an issue for adults diagnosed with T1. Since I was diagnosed in 1970, pre glucometers, I have no idea whether I had a honeymoon, my hypos were certainly few and far between. Having said that, someone posted a really interesting article a few months ago about how life is genuinely easier if you have a bit of insulin production left. Apparently some T1s can go on producing a small amount even after decades...

 

[Deleted member 527103]

Honeymoon period experiences seem to differ (just like experiences of discos).
Thankfully, I had no spluttering; just a gradual increase of my insulin dose over the first 8 years of my diagnosis which I put down to my beta cells slowly dying off.

 

[david4503]

Okay, thanks everyone, I think I get the picture. This appears to be a term that arose after the medical world recognized that adult-onset Type 1 needed a new classification, namely Type 1.5. At around the same time, early detection tests came along and doctors started pre-treating Type 1 and prescribing insulin earlier for 1.5. This would all have increased awareness of so-called honeymoon periods since previously, Type 1.5s were often misdiagnosed as Type 2 and Type 1s had no idea their beta cells were dying.

That said, I think “honeymoon period” should be renamed, assuming it even needs a name. I’m not sure it does. But whatever the replacement, it should at the very least not be confusing or counterintuitive. This term is both. Honeymoon has a very positive connotation, wherever, however it’s used. There’s very little if anything that can be said to be positive about one’s beta cells dying, whether the process is slow or fast. It’s no more positive than losing kidney function, slow or fast.

Some things you can paint a smiley face on. I don’t see the good in trying to paint one on dying beta cells.

 

[Marie 2]

@david4503 Lol.............type 1.5 is not used anymore, at least officially in the US. Talk about confusing! There is no set way to define what it means. What age? how long? etc. You are classed as a type 1 for medical and insurance purposes as your beta cells die and you lose the ability to make insulin and that is the only sure thing.

 

[david4503]

Whatever it’s called today, tomorrow or the next day, adult-onset Type 1 seems to happen more now than it did in the past — or else there’s just more awareness of it I don’t know and I don’t know if there are any reliable statistics or studies (if anyone has a link to one, please post it). But thirty years ago, you just didn’t hear or read about 50 year-olds getting Type 1. I’d say something’s up with that. And it’s safe to say that the medical brain-trust does not have a good handle on the different Type 1 scenarios and why they happen the way they do.

The Type 2 situation has definitely changed radically with kids getting what used to be an adult disease. The reasons for that are also much clearer than with any increase in the Type 1 population.

 

[EllieM]

But thirty years ago, you just didn’t hear or read about 50 year-olds getting Type 1.

I suspect they just got a T2 diagnosis and went onto insulin early?

 

[david4503]

I suspect they just got a T2 diagnosis and went onto insulin early?

Diagnosed Type 2s on insulin were clearly insulin-resistant and still producing their own. They weren’t going from Type 2 to Type 1. Two different diseases. Insulin resistance was one thing, insulin dependence was another. Where did Type 1 at age 50 come from?

 

[EllieM]

Diagnosed Type 2s on insulin were clearly insulin-resistant and still producing their own. They weren’t going from Type 2 to Type 1. Two different diseases. Insulin resistance was one thing, insulin dependence was another. Where did Type 1 at age 50 come from?

I thought long term T2s stopped producing insulin. (High blood sugars damage the insulin producing cells). Am not clear whether anyone was doing cpeptide tests 30 years ago? I agree that T1 and T2 are different diseases but if the end result is insulin you might not distinguish between them...

Certainly, my understanding 40 years ago was that if you were diagnosed under 30 you were T1, if over 50, you were T2, and the diagnosis was pretty well done by age.... (Happy to be corrected, this is just how I remember it.)

 

[david4503]

I thought long term T2s stopped producing insulin. (High blood sugars damage the insulin producing cells). Am not clear whether anyone was doing cpeptide tests 30 years ago? I agree that T1 and T2 are different diseases but if the end result is insulin you might not distinguish between them...

Certainly, my understanding 40 years ago was that if you were diagnosed under 30 you were T1, if over 50, you were T2, and the diagnosis was pretty well done by age.... (Happy to be corrected, this is just how I remember it.)

 

[david4503]

I’ve never heard of T2s who just stop producing insulin. I suppose it could somehow happen but it would certainly be very rare. As for diagnosis, over here, diagnosing T1 or T2 was never just done based on age. But as per my earlier post, you didn’t see Type 2 in kids and you didn’t see Type 1 happening past the twenties. So it was a safe bet that a 10 year-old had Type 1 and a 50 year-old had Type 2. Something changed and I don’t think misdiagnosis and changing terminology explains it.

 

[Marie 2]

Certainly there seems to be more type 1’s at an older age, but also just in general. Maybe it’s a predominate gene getting inherited more, maybe the viruses that set it off are around more who knows yet? But a lot of it in the past is the misdiagnosis’s of type 1’s that is still currently an ongoing problem.

It used to be presumed type 1’s got it mostly as kids, it was referred to as juvenile diabetes. The prevailing theory is that type 1’s that got it when they were older in the past were misdiagnosed as type 2’s. You are more likely to get type 2 the older you get. And it still happens a lot. 50% of type 1’s are over the age of 30, and 35% or more are still misdiagnosed as type 2’s at first. But it's also why they refer to it as type 1 now instead of juvenile diabetes just because of the acknowledgement that all ages could get it. And a lot of the medical field is still behind. I've run across a couple of doctors that still automatically think I got it as a kid. Our emergency room recently sent someone home that even asked if they could be a type 1 and was told he was too old, he was in his late twenties. He got a call the next day to get back there, the tests came back saying he was a type 1.

They think that an overworked pancreas can wear out over time. And that is what you were taught years ago would happen to a type 2. It turns out that less than 5% of type 2’s are insulin deficient to some extent. But type 2’s when nothing else works are put on insulin, so if you were a type 1, it is also what you needed. And in adults since the process happens slower, meds and lifestyle changes work at first because you still make some insulin, helping to mask you are actually a type 1. It doesn't suddenly stop usually as an adult, and the odds were, you would have been put on insulin by the time it does, because nothing else was working anymore. C- peptide and especially antibody tests are relatively newer. C-peptide was first discovered in the 70's and GAD in the 90's in reference to diabetes. But I bet not widely used yet for quite a few years, And still isn't in a lot of countries because of costs.

Misdiagnosis is and was a huge problem. I know because I was misdiagnosed for over 8 years. I asked if I could be a type 1 because I had an uncle that was a type 1. I ate healthy, swam 75 laps every day. Type 2 didn't make sense to me and I kept getting worse. I was told no and they never tested me, I believe because I was overweight and 46, they just assumed I was a type 2. I switched doctors, who sent me to a new endo who tested me right away and I was finally diagnosed right. If I had stayed with those doctors would I ever had been properly diagnosed? 8 years was a long time and I was on insulin so I was surviving. There are many many around with similar stories.

 

[david4503]

I’m not discounting the prevalence of misdiagnosis, just saying that it’s a bit of a red herring as far as understanding why so many more people are getting Type 1 as mature adults— assuming that this is the case, which looks to be a pretty safe assumption. Eventually, every Type 1, regardless of how long it takes to get diagnosed, becomes a clear case of Type 1. True now, true in the past. And an antibody test, while good to have, was not at all necessary for confirmation in the past. The time between first onset of symptoms and DKA was very short.

Bottom line, Type 1 didn’t take 40 or 50 years to announce itself. There just weren’t all these new Type 1s suddenly getting diagnosed in middle age. This appears to be a recent phenomenon.

So yes, there’s probably an explanation having to do with genetics, viruses, toxins or something else. Let’s hope somebody somewhere is working on it. It’s not a good trend. Assuming, again, the data confirms that it’s happening.