Honeymoon period

[hale710]

1 years since diagnosis is fast approaching. Apart from a few blips my honeymoon period is showing no sign of ending. It has not been particularly erratic, I know the carb threshold at which my pancreas will kick in alongside the injected insulin and so I can account for it and avoid most of the big fluctuations. My doses are also very low still, and with my increased activity levels they are continually reducing

It has been suggested elsewhere that I should ask for a pancreatic function test at my next appointment (is that the c-peptide test or is that something different?!). I am a bit unsure if what insight this would give me and what the benefit would be?

How long did your honeymoon last? Was it erratic and difficult, or a slow easy ride like mine?


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[mo1905]

The C Pep test will show how much, if any, insulin you are producing naturally. I guess if you are already diagnosed T1 ( GAD test ? ) then how this will be of benefit I don't know. As for length of honeymoon period, I don't think you'll get a definitive answer. When I was going through it, I found things fairl easy but a part of me wanted it to end so I could start to get my head round things. So frustrating eh ?


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[ElyDave]

One of the DSNs at Addenbrookes who has been helping me with dose management aroudn sport tells me that she has another fairly athletic type whos still in honeymoon phase 4 years post diagnosis.

What are you expectineg the results to tell you, and how are you expecting to make use of them? If you aren't going to be changing anything as a result, then what's the point of spending the NHS's money on it?

 

[hale710]

One of the DSNs at Addenbrookes who has been helping me with dose management aroudn sport tells me that she has another fairly athletic type whos still in honeymoon phase 4 years post diagnosis.

What are you expectineg the results to tell you, and how are you expecting to make use of them? If you aren't going to be changing anything as a result, then what's the point of spending the NHS's money on it?

That was kind of my point! I don't see much point. If I won't learn anything useful then why waste time and money?!? The only suggestion was that IF (and it's a big if) I have enough function I could temporarily go to metformin and a low carb diet until such a time as insulin needs increase. The benefit of this is it will lift work restrictions. But it's a big IF, and I would have to go back to injections eventually anyway so I don't known if to worth it.

Mo as far as I'm aware I didn't had the GAD. They just saw my BG of 29, young and slim and said they assumed in T1. They DEFINITELY said assume on that first day, but they may have done further tests with the blood they took that day. I though it was just the hba1c but I could be wrong.

Good to hear there is someone with a longer honeymoon! It all just seems a bit on the easy side for a honeymoon, like I'm missing something! Most people want it to end so they can get routine, but my routine is fine already (discounting the exercise shambles)


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[noblehead]

It's a big 'IF' hale, my guess is you still need insulin even if it's just your basal.

 

[smidge]

Thing is Hale, that the insulin might actually be supporting your pancreas in some way. When I was first on basal-only, I was only taking 2 units every other day, and I thought one day that it hardly seemed worth it so i stopped taking it. First day i was fine. 2nd day not bad at all. 3rd day my BG started to rise but was still below 7. By the 4th day my BG was deteriorating and I concluded that I really did need those two units of insulin. Having said that, I didn't try metformin or anything.

These days, more than 5 years in, I'm still on relatively small doses of basal although significantly higher than I was on. (Obviously I use bolus as well now). I still think I am producing some insulin but no idea how much and it is significantly less than when I started on insulin - I know this because I forgot to take my basal one evening and woke to a fasting of 15 or there abouts! For me it has been a very slow progression - not the cliff edge that some people in the honeymoon phase seem to drop off. Maybe that's a difference between LADA and full Type1 honeymoon phase? (No evidence on that, just questioning!)

I guess you could not take your insulin one evening and see what your levels are like the next morning? It might give some idea of how much the injected insulin is needed for you and whether there's any scope to try tablets instead.

Smidge

 

[hale710]

It's a big 'IF' hale, my guess is you still need insulin even if it's just your basal.

Precisely. It was suggestion from others on another site but personally I don't think I will bother. Aside from my work restrictions, I don't actually mind injecting (still would prefer a pump though from tbr perspective I think!)


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[paul-1976]

Thing is Hale, that the insulin might actually be supporting your pancreas in some way. When I was first on basal-only, I was only taking 2 units every other day, and I thought one day that it hardly seemed worth it so i stopped taking it. First day i was fine. 2nd day not bad at all. 3rd day my BG started to rise but was still below 7. By the 4th day my BG was deteriorating and I concluded that I really did need those two units of insulin. Having said that, I didn't try metformin or anything.

These days, more than 5 years in, I'm still on relatively small doses of basal although significantly higher than I was on. (Obviously I use bolus as well now). I still think I am producing some insulin but no idea how much and it is significantly less than when I started on insulin - I know this because I forgot to take my basal one evening and woke to a fasting of 15 or there abouts! For me it has been a very slow progression - not the cliff edge that some people in the honeymoon phase seem to drop off. Maybe that's a difference between LADA and full Type1 honeymoon phase? (No evidence on that, just questioning!)

I guess you could not take your insulin one evening and see what your levels are like the next morning? It might give some idea of how much the injected insulin is needed for you and whether there's any scope to try tablets instead.

Smidge

Mine appears to be a slow progression too-although I have to ultra low carb I'm still managing on 10 units of basal split into 2 and we both know of someone else with LADA who is still managing with a basal only regime combined with low carbing-perhaps Dr Bernstein was correct in his theory that it doesn't have to be progressive if a small amount of injected insulin combined with a low carb diet is used early enough-I guess I won't be able to know or say more for another few years.

 

[hale710]

Thing is Hale, that the insulin might actually be supporting your pancreas in some way. When I was first on basal-only, I was only taking 2 units every other day, and I thought one day that it hardly seemed worth it so i stopped taking it. First day i was fine. 2nd day not bad at all. 3rd day my BG started to rise but was still below 7. By the 4th day my BG was deteriorating and I concluded that I really did need those two units of insulin. Having said that, I didn't try metformin or anything.

These days, more than 5 years in, I'm still on relatively small doses of basal although significantly higher than I was on. (Obviously I use bolus as well now). I still think I am producing some insulin but no idea how much and it is significantly less than when I started on insulin - I know this because I forgot to take my basal one evening and woke to a fasting of 15 or there abouts! For me it has been a very slow progression - not the cliff edge that some people in the honeymoon phase seem to drop off. Maybe that's a difference between LADA and full Type1 honeymoon phase? (No evidence on that, just questioning!)

I guess you could not take your insulin one evening and see what your levels are like the next morning? It might give some idea of how much the injected insulin is needed for you and whether there's any scope to try tablets instead.

Smidge

I skip my basal regularly with no issues. I will purposely miss it out if I've been drinking or have had a day of high activity etc even on a daily basis I will reduce to 1 unit if I've had a run that day, 2 units on a normal day.

On DAFNE the DSN said she also didn't see a real need for my basal but suggested I keep taking it to maintain the routine, which I agree with.

As far as the possibility of not needing the bolus, that would be heavily reliant on an extremely low carb diet. In general I'm not hugely in support of that for the long term, but as a short term fix I wouldn't turn my nose up at the idea.

I see so many similarities between myself and LADA, which is what I think sparked someone to suggest the function test.


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[hale710]

Mine appears to be a slow progression too-although I have to ultra low carb I'm still managing on 10 units of basal split into 2 and we both know of someone else with LADA who is still managing with a basal only regime combined with low carbing-perhaps Dr Bernstein was correct in his theory that it doesn't have to be progressive if a small amount of injected insulin combined with a low carb diet is used early enough-I guess I won't be able to know or say more for another few years.

Even on a medium carb diet my TDD is often less than 10!


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[paul-1976]

I wonder what the age cut off point is for a diagnosis of full Type 1 or whether it's counted as late onset simply due to being over a certain age?

 

[hale710]

I wonder what the age cut off point is for a diagnosis of full Type 1 or whether it's counted as late onset simply due to being over a certain age?

I was diagnosed as T1 at 23, and on DAFNE there was a woman in her late 60s! She was having little to no honeymoon though and was clearly T1


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[mo1905]

I was diagnosed T1 at 46 so I'm not 100% sure what is the difference between this and LADA ? Not even sure the docs do !


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[hale710]

I thought (in my basic understanding) that T1 had more of a cliff and LADA a slope.

But then you were misdiagnosed at first weren't you mo?

You don't count with your no hypos anyway!


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[mo1905]

I thought (in my basic understanding) that T1 had more of a cliff and LADA a slope.

But then you were misdiagnosed at first weren't you mo?

You don't count with your no hypos anyway!


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Lol ! Before the GAD test they assumed T2. Then, T1 after test. Had a honeymoon phase and now settled. Still not sure of difference though ! Oh well, all fun and games eh !


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[ElyDave]

I had a bloody great cliff in terms of symptoms, not sure about pancreatic function though and that was at age 39 - is that LADA or T1? I can define a fairly strong candidate for a trigger, but who's to say my pancreas wasn't already in slow decline?

I'm not sure TDD is anything to go by to be honest as my basal is <10U per day having fine tuned it after DAFNE. If I have a prolonged exercise session I'll drop that even further.

At an average 150g carbs a day my TDD would still be <20U

One thing I would be thinking about in your position (and I am thinking about in mine) is the relative risks of the approach you are thinking about taking.

Yes, you may be able to get back offshore on metformin, but as above, what is the potential risk if your pancreas takes a turn for the worse and control goes udders up? Rapidly increasing BG adn the risk of DKA, vs working through the established OGUK process and being an insulin controlled offshore T1.

One risk factor was highlighted for me recently, talking to someone at Maersk, where they've had people offshore two weeks past normal crew change due to the weather. I'd normally go offshroe for 2-4 days, and pack accordingly - what happens if you get stuck offshore with no supplies? How much reasonable contingency do you build in?

 

[hale710]

I had a bloody great cliff in terms of symptoms, not sure about pancreatic function though and that was at age 39 - is that LADA or T1? I can define a fairly strong candidate for a trigger, but who's to say my pancreas wasn't already in slow decline?

I'm not sure TDD is anything to go by to be honest as my basal is <10U per day having fine tuned it after DAFNE. If I have a prolonged exercise session I'll drop that even further.

At an average 150g carbs a day my TDD would still be <20U

One thing I would be thinking about in your position (and I am thinking about in mine) is the relative risks of the approach you are thinking about taking.

Yes, you may be able to get back offshore on metformin, but as above, what is the potential risk if your pancreas takes a turn for the worse and control goes udders up? Rapidly increasing BG adn the risk of DKA, vs working through the established OGUK process and being an insulin controlled offshore T1.

One risk factor was highlighted for me recently, talking to someone at Maersk, where they've had people offshore two weeks past normal crew change due to the weather. I'd normally go offshroe for 2-4 days, and pack accordingly - what happens if you get stuck offshore with no supplies? How much reasonable contingency do you build in?

Fair point there with supplies. Rotation (which is what I'm required to do) is 2 on 4 off. I would probably have taken double of everything just in case, similar to a holiday really.

Unfortunately BP are not willing to take the risk as send me offshore. I'm fighting it, but they have 1 offshore role for a mechanical engineer and a fair few of us fighting for it. I was a strong candidate, but T1 leaves me higher risk than a fit healthy person so I can't go. Looking highly likely I will be packing up my things and moving to Shetland, or looking for a new job.

No cliff pre diagnosis either. Slow and steady decline over a few months. First BG test showed 18 (on the Friday), 2nd was 29 but I'd had a hot chocolate 20 minutes before so it's not an indication of much lol


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[ElyDave]

Sullom Voe eh? Been to the power station a few times, but only in January when it's effin' freezing.

You'll get to see the northern lights, Up Helly Ar (or however it's spelt), sea otters, and learn to run into the wind.

Nothing at FPS or CATS?

 

[hale710]

Sullom Voe eh? Been to the power station a few times, but only in January when it's effin' freezing.

You'll get to see the northern lights, Up Helly Ar (or however it's spelt), sea otters, and learn to run into the wind.

Nothing at FPS or CATS?

FPS doesn't take graduates of my level (I'm fighting that) and cats is full for my level. Yet SVT has 6 spaces...

I don't mind Shetland, I have plenty family in Lerwick. But unfortunately my better half couldn't work up there so couldn't move with me. Not ideal when we're getting married next year.

I need to master running normally before we add that crazy wind


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[noblehead]

Precisely. It was suggestion from others on another site but personally I don't think I will bother. Aside from my work restrictions, I don't actually mind injecting (still would prefer a pump though from tbr perspective I think!)

I'd imagine the suggestion had good intentions behind it hale.

Appreciate your frustration not being able to go off-shore but first and foremost your health must come first, is it a blanket ban on type 1's working off-shore or are there companies that allow insulin users to work provided they pass a strict medical test?