My consultant and the honeymoon (period)

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JohnnyRam

JohnnyRam

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Relationship to Diabetes
Type 1
Yesterday I had a first meeting with my consultant, following several sessions with DSNs in his team. Discussion centred mainly on type, given that while my official diagnosis is type 1 (specifically LADA, but the team doesn’t distinguish between type 1 and LADA), antibody tests were negative and C peptide test indicated my body is making some insulin, but their assumption, given my low BMI, weight loss issues at diagnosis and other symptoms, that my pancreas is still enjoying a honeymoon period through the gradual onset of LADA.

Given that my TIR is well over 80% and HbA1C fell from 114 to 52, there was lots of Young Mr Grace stuff (“you’re doing very well” for those too young for the reference), but the prediction was that things will change and get harder to manage as beta cells gradually give up the ghost - further tests in 2 years. In other words, expect to stay even more flexible than I otherwise might (like everyone I am constantly adjusting assumptions and learning) with how I manage my diabetes and expect assumptions on ratios, insulin dosage, impact of certain foods and exercise etc, to need to change.

I hadn’t actually heard this spelled out before. But it struck me as obvious and logical enough once explained. I was wondering whether any others diagnosed with a gradual onset LADA/type 1 had received this advice, or whether anyone had seen and managed a declining honeymoon period, and how that went.
 
I think most of us have been through a honeymoon period and come out the other end.
I don't think it got harder, it just meant that I had more to learn (I am still learning after nearly 20 years) and needed to adjust my insulin.
80% TIR is great but I think it is higher than the recommended target. For me, it has been important to live my life as well as achieve a good TIR and HBA1C. It is like working really really hard at a job to earn loads of money but never having time to spend it.
I am someone who likes to push things a little. So, whenever diabetes things seemed to be going well, I threw another spanner into the works to see how I could cope with sailing across the channel in force 8 gale or travelling to Uganda to track gorillas or trying out a flying trapeze or do a sky dive or getting a new job or hiking through the Himalayas or ...
Each thing taught me more about how my diabetes reacts and gave me confidence to not let diabetes stop me.
 
Hi @JohnnyRam
i was diagnosed as an adult with Type1/LADA. I found the honeymoon period made things more difficult as my pancreas would join in unexpectedly at times. Once this intermittent delivery of ’homemade’ insulin vanished I found things were more stable so things got easier.

However long we have had T1 there is a need to be aware of the possible changes to ratios and basal rates being needed. I find that my basal insulin needs change with the weather/seasons. Boluses vary with what I have been doing before the meal, what type of food I am eating, the amount of carbs, ….
T1 keeps us on our toes but it definitely becomes part of the new ‘normal’ life and some of it becomes automatic.

After the initial settling on basal insulin doses and bolus ratios, I thought that I would just review data before my 6 monthly appointment. It was only coming on here that I found that others changed their calculations/doses more often that I started to look in more detail in between my appointments. I think the increased use in sensors also promots more change as we have access to so much more data.

80% TIR is brilliant, especially in the early stages. Use the data you have access to, to help you to look for patterns and make decisions about changes. Then fire away with any questions that arise.
 
Thanks for helpful replies. Just for avoidance of doubt, @helli, I don’t obsess about my TIR or HbA1c. If I was on a skiing or running forum, both passions of mine, I wouldn’t be banging on about TIR - a diabetes forum seems a good place to do so though :D. I am sure you are right in pointing out though that these things can almost become an end in themselves. The consultant was clear that while they targeted 70% TIR, the difference between say 90% and that 70% was not very significant in terms of overall diabetes management outcomes.

I have to say though that there may well be some more mundane things than diabetes preventing some from emulating your various challenges. Fear springs to mind on one or two....:rofl:

@SB2015, thanks, have had some early insight into some of these issues, not just in relation to how exercise and food affects boluses, but how having a cold can mean a need to adjust basal rates. I still have a number of seasons to experience with this - so far only managed a winter and part of a spring, and I expect to find all sorts of fresh things!
 
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Never been given advice. Just adorable comments like, ooh you’re a funny one.

Also I hate the name LADA my dad had a brown LADA when I was a kid with leather seats… I hated that car! And when I tell people and they say ooh what’s a LADA? I can never remember what it stands for, then I look like an idiot that makes diseases up !
 
Whilst I don’t have an official diagnosis of type, my insulin production is low but not non-existent, after nearly 15 years, 13-14 of those on MDI insulin. Cpeptide was I think 265 stimulated with a bg of 18, which is slightly above the definite T1 level but much lower than the normal range especially given my bg.

I do find things pretty random, I have definite phases though usually. A few weeks or months where I’m constantly high, nothing works, a few weeks or months where I am always low, the odd days where it does something random in between. Certainly makes sense to consider it like a honeymoon though clearly it wouldn’t still be called that for me this much later.
 
EmmaL76 said:
Never been given advice. Just adorable comments like, ooh you’re a funny one.

Also I hate the name LADA my dad had a brown LADA when I was a kid with leather seats… I hated that car! And when I tell people and they say ooh what’s a LADA? I can never remember what it stands for, then I look like an idiot that makes diseases up !
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LADA is a daft name I agree. I just tell people I have a type 1 that creeps up slowly when you're old (well that applies to me anyway :rofl:)
 
Mt experience with LADA has been the need to gradually increase my insulin over 5 years as my beta cells die. We are all different but be prepared for the need for more insulin as you progress.
 
Thanks @DaveB, makes sense
 
I was diagnosed at 21 and my recollection was that my doses gradually drifted upwards over 2-3 years to roughly where they are now, along with a general increase in my diabetes’ stroppiness and shifting of the goalposts.

I think the WHO were recommending shifting over to calling it ‘slowly evolving immune-related diabetes’, but that is so the opposite of catchy that I can’t imagine it being adopted any time soon 😱
 
SEIRED?
I can see that easily becoming SEARED or SIRED.
Although I like the "Immune-related diabetes" part.
But does that mean "normal Type 1" is FIRED
 
Hmm SEIRD. Absolutely not!! Sounds like I’m slightly over cooked.
 
I know I am. I’m hardly medium rare now 😳
 
In 2022 it was diagnosed T2D, but due to weight loss it seems the diagnosis was false. My doctor would be interested if it is genetic MODY or just LADA. But I think I am too old for MODY. He asks always about my weight at birth, but I always forget. When I told him I hope that his diagnosis is false and I am not LADA and he told me, why you would like to be rather a Porsche? My Antibodies Tests are negative, but after so much time the positivity of the tests are declining. He would make some genetic tests to have more information. I am going to another doctor to get maybe a different diagnosis. My HbA1C is in prediabetes range, C-peptide and insulin production is lower but still in normal range. It was the first time I heard TIR.
 
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