Still in T1 honeymoon

[Tdm]

I've just had my diabetes clinic appointment and would like to see what you think.
I was rather proud of having got an estimated a1c of 5.5% with 5 reported hypos (shallow) over 90 days (some of which weren't hypos according to blood sugar monitor) - none is last month.
But the doctor said it was because I was in the honeymoon period and should raise my a1c due to hypos.
Some more info. I was diagnosed with T1 dec 21. Initially i was taking about 1 unit insulin to 20 carbs, and was verging on clinically underweight. Now I am on 1 to 7 and a good weight. My blood sugar management and a1c have got steadily better over time. I eat low carb, don't pump, cook pretty much all my own food to be blood sugar friendly, eat far too much almond flour cakes, and put quite a bit of effort into the whole managing blood sugar thing.
Do you think I am still in the honeymoon period? Is it likely to get harder? I am a bit miffed to be honest, it feels as if the doctor has dismissed my efforts.

 

[rebrascora]

I can totally understand that you are disappointed with your consultant's attitude and I think you are doing absolutely brilliantly to achieve that HbA1c with so few hypos, whether you are still in the honeymoon period or not. It would be nigh on impossible to say whether you are still producing some insulin or not without doing a C-peptide test but I am sure there was a study of some older Type 1s in the USA who had been diagnosed several decades and were still producing some insulin, so I really think the concept of the honeymoon period is not as well understood as it might be and perhaps lasts much longer than people think. Also, for some people, it rounds off the edges and helps them to manage better and for others it makes things more unpredictable and harder to manage, resulting in more hypos.

It is interesting that your ratios changed. I started on 1:10 and I still use 1:10 although I rarely carb count because I low carb and mostly use my Libre to sugar surf but what changed for me as my honeymoon came to an end was my basal doses needed increased and that happened in 3 distinct steps over the course of the first 2 years, the last one being after my first Covid vaccination when my basal needs doubled over the following 3 months.... I can only assume as a result of my immune system killing off my remaining beta cells, perhaps triggered by the vaccine.

I think some consultants don't have realistic expectations with regards to hypos and also don't realise that Libre often exaggerates these things. My last HbA1c was 46 which was my best ever but I had had quite a lot of hypos although no where near the 8% below target the Libre registered. My consultant is, thankfully, really encouraging and whilst he didn't say anything negative he was happy to hear me say that there were too many hypos and that I needed to reduce them.

All I can say is, don't let your consultant take the shine off your achievement which is exemplary. Whether you are still in the honeymoon period or not, it is a great result and you have every right to be incredibly proud of it, especially as you are putting a lot of effort into your management. I would say, keep doing whatever you are doing. If you are still in the honeymoon period then you will no doubt adjust as that changes, but all you can do is manage the "here and now" and you are doing that incredibly well.

Many congratulations on a really great result!

 

[Tdm]

Thanks for that. Interesting what you said about covid vaccine. Whilst, looking back, i had type 1 symptoms well before covid (need to pee, changes in eyesight) which then went away (i know this happens in other autoimmune conditions) i do suspect that the vaccines may have had an effect to speed the inevitable up - based on suspicion only. Still don't regret the vaccine mind you.
My basal is 2 units of abasaglar a day and has remained the same for ages. They started me on 10 but that was a big mistake (fun times!) and it went down to 3 in a matter of weeks then 2 in february 22. That was a little too much until i put weight on, but its spot on now.

My first diabetic clinic made quite a few mistakes and factual errors so i asked for a referral elsewhere. This was my first appoinment at the new place. It seems better- they offered me DAPHNE and suggested a few solutions to issues that the prev centre ignored.

I do wonder if consulants take a vow of disapproval? Perhaps they realise if we get good control they are out of a job!! My previous one said I was 'trying too hard'. In my opinion, its up to each of us how much we are prepared / able to alter our lives for our condition.

 

[rebrascora]

At just 2 units of Abasaglar a day I would be very surprised if you are not still producing enough insulin yourself to cover some of your basal needs as that is a tiny dose, but we are all different so nothing is impossible. Do you do a lot of exercise/physical activity which is perhaps helping balance your basal needs.

Great that you have been offered a DAFNE. Is it an in person or remote course. Really hope it is in person because you gain so much from spending time with other Type 1s. I very nearly didn't do it because the title put me off since I eat low carb, but I gained so much from it, even though I don't follow a lot of the principles, it is useful to have the structured approach to fall back on when you are ill or have problems. The big thing I gained from it was confidence.

I do wonder if consulants take a vow of disapproval? Perhaps they realise if we get good control they are out of a job!! My previous one said I was 'trying too hard'. In my opinion, its up to each of us how much we are prepared / able to alter our lives for our condition.

I do think there may be an element of this, but they should see it as them doing their job well if we are managing well, because they have given us the tools and education to do a good job..... however, if this was your first time meeting the guy, he can't claim any credit for that I guess. It took a while for me to find a good working relationship with my consultant and 10-15 mins twice a year means you are limited in developing that.
As regards trying too hard, I think they see a lot of people with burn out and it is very easy to run into a brick wall sooner or later, so maybe this is their way of trying to forwarn you of that and maybe that is why they aren't more encouraging sometimes. I suppose it can be a double edged sword.
I am well aware that burn out is a problem and that I can be too cavalier about hypos sometimes so I self monitor those things and deliberately loosen up a little occasionally, particularly if I am going through a bumpy patch with my levels. The temptation can be to try harder in those situations but sometimes easing off a bit can bring better results than trying harder and I do discuss these things with him as I don't really have practical everyday stuff I need to get help with. So at least he is aware that I am aware of the pitfalls of trying too hard, if you know what I mean.

 

[Jacen017]

I've just had my diabetes clinic appointment and would like to see what you think.
I was rather proud of having got an estimated a1c of 5.5% with 5 reported hypos (shallow) over 90 days (some of which weren't hypos according to blood sugar monitor) - none is last month.
But the doctor said it was because I was in the honeymoon period and should raise my a1c due to hypos.
Some more info. I was diagnosed with T1 dec 21. Initially i was taking about 1 unit insulin to 20 carbs, and was verging on clinically underweight. Now I am on 1 to 7 and a good weight. My blood sugar management and a1c have got steadily better over time. I eat low carb, don't pump, cook pretty much all my own food to be blood sugar friendly, eat far too much almond flour cakes, and put quite a bit of effort into the whole managing blood sugar thing.
Do you think I am still in the honeymoon period? Is it likely to get harder? I am a bit miffed to be honest, it feels as if the doctor has dismissed my efforts.

I was diagnosed around the same time as you and have been using similar ratios and have the same A1C.

I've had feedback that my "control is too tight" and that I need to "loosen up" but I haven't really been trying hard to stay in range so I wasn't sure what I could loosen up.

In the last month I've had to increase my basal to 12 and it has started get a bit harder to stay in range with my insulin needs changing almost every day. It's like my pancreas is just stuttering out really random amounts of insulin now.

 

[Tdm]

Sounds like a press pass to have a donut.....
Having given it some thought, think my consultant may be right. last night before bed, after my novorapid would have run out, i had about 3g carbs. My blood sugar went from 5 to 7 but was down to 5 about 2 hrs later...i have been putting that down to basal insulin but maybe i can still produce enough insulin to deal with a couple of carbs. Actually, now i think about it i used to be able to have about 10 carbs for dinner with no insulin

 

[Tdm]

They offer in-person and microsoft teams Dafne courses....i did ask for teams but may ask if can do in prrson, as i don't know any T1s and it would be nice to exchange experiences and advice. Whilst my a1c is good, i have cut back on other aspects of life since diagnosis and with working from home i really need to expand my life out again...

 

[rebrascora]

I would highly recommend doing it in person if you have that option.

 

[PeteM2020]

I was diagnosed T1 in Feb/Mar 2020. Until about this time just year my control was very tight, I was working highly physical job, having hypos every now and then, not need much insulin, and generally feeling really good about the whole thing.

I've had some other issue to do with chest, and generally not feeling too great for the past 12 months. Really stressful with work and my sone has taken over a lot of the physical stuff so I get more time to sort out quotes and invoices etc. Sitting around a lot more has made it much harder to control sugars, and I'm actually finding the whole T1D thing pretty depressing. I'm fed with injecting insulin, fed up with seeing my blood glucose on Libre, fed up with finger pricks, and fed up with knowing this is new normal.

Things can get hard after the initial honeymoon period. I didn't think I would feel the way I do right now.

 

[helli]

There seems to be an assumption that the honeymoon per is just a few months. This may be the case for children but, when diagnosed as adults, it seems our bodies are a little more attached to our insulin producing cells and they take longer to die off. As my insulin dose gradually increased over either years despite not change in diet, weight or exercise, I believe that is how long my honeymoon period lasted.
@Tdm Being diagnosed less than a year ago, it is not surprise to me your doc would suggest you are in the honeymoon period.

@PeteM2020 it doesn’t sound to me as if you are over the “initial honeymoon period”. However, you may benefit from something like the DAFNE course to learn more about how to manage your diabetes with and without exercise.

 

[nonethewiser]

Very possible still in HP, especially as you were only diagnosed last December.

Don't ever remember it being called HP when I was diagnosed, or could be mistaken, but remember starting off on highish doses then going down to injecting next to nothing, it went on for some time before settling & could have been up to 12 months or more, back then you mixed 2 different insulins in same syringe.

Northerner who is ex admin has been diagnosed type 1 for 12 years & doesn't use basal insulin, so condition can be strange to fathom out sometimes.

 

[Jacen017]

I would highly recommend doing it in person if you have that option.

Definitely worth doing an in person course. I made some excellent friends I still hang out with 🙂

 

[everydayupsanddowns]

I was diagnosed in my early 20s, and remember my doses gradually increasing in steps and stages, as @rebrascora describes, until I got to approx 30-ish units a day, where they have stayed ever since. Sometimes up a bit… sometimes down a bit… through the year, but I’ve been in that ballpark for decades now.

 

[khskel]

I went to requiring zero basal for a few months about a year after diagnosis. Now it just moves with the seasons.

 

[Tdm]

I have my appointment write up. My target a1c is higher than my current a1c! And apparently I have good hypo awareness, which is news to me! Unless they mean I don't go hypo much, but its not due to symptoms...what level do you all know you are too low, without measuring?

 

[rebrascora]

what level do you all know you are too low, without measuring?

I sometimes feel mild hypo symptoms in the mid to low 4s but often it will depend on how fast or slowly levels are dropping and how high you were before. If they are dropping fast it is usually more noticeable, but then sometimes because it is dropping fast it has got below 4 before you test. I would guess the majority of the time I feel hypos in the mid to high 3s.

If you are asleep, sometimes your body doesn't notice a hypo coming on quite so soon, probably because you are not actively conscious to spot the mild symptoms. For instance, one of my early symptoms is my peripheral vision going a bit blurry but if my eyes are shut and I am lying asleep, in the dark, then I am not likely to experience that sign. Also, I imagine because you are lying down you are less likely to feel wobbly legs etc. so it is probably harder for the body to register that you are going hypo and alert you than when you are awake. I have had the odd nocturnal hypo where I have reached 2.8 before waking up. I am talking about finger prick results because Libre always says I am lower than I actually am and I have woken on 2 or perhaps 3 occasions where Libre has just said "LO" and I have not wasted time trying to quantify it as I was clearly hypo, so just ate some hypo treatment and went back to sleep, but in general Libre reads about 1mmol lower than actual finger prick BG and I think the "LO" warning comes on at about 1.8 which would tie in with my lowest ones being about 2.8 with a finger prick. Most of the time these days I don't double check the Libre if I feel hypo. So far I have never laid on my sensor and caused a compression low, so I tend not to worry about getting false lows at night, but if I don't feel hypo I will always double check with a finger prick because I hate over treating lows

I should say, I don't have alarms with my Libre so I have to rely on my body alerting me and I am pretty comfortable with that situation.

 

[Tdm]

Yes, it seems i have poor hypo awareness- thank goodness for libre.
Also need to work on my cholesterol as i'm relstively high. But then, i have rather over-done it recently on the keto snacks (been trying to put weight on, but my bmi now 20.5 which is ok. Its like wack-a-mole..you get weight on then cholesterol goes up...)

Well, out with the butter and cream, in with herbal, milk free teas. Hopefully that will help.