Struggling Lately, Too High.. Too Low & Fearful

[John8]

Hi all,

Been type 1 for about 16 years now, you think I would have enough experience in the bag by now to work things out but it doesn't seem so.

I've never been amazing at controlling my glucose, plenty of highs and lows but would also spend a decent amount of time in range.

Lately I seem to be having spontaneous increases and decreases in insulin sensitivity. At the moment I eat, my levels will go up to around 20 mmol and then they will slowly fall down again over around 4-6 hours. If I take even 1 unit of Novorapid they will drop and I will end up going low. I've tried adjusting my levemir, I was taking 30 before bed before Christmas and I was doing well to stay in range, but then dropped it to 10 after having an episode of dropping 1 mmol per minute in the evening and not being able to get them up quick enough (which was probably down to too much novorapid rather than levemir). I then stayed in the 20 range for a good week too scared to overdose. I've increased levemir up to 26 now which has worked fine for the last couple of weeks but now it's not as explained at the beginning of this paragraph.

Can the pancreas start producing insulin again? I didn't think it was possible especially 16 years in but now I'm wondering.

I've got the libre 2 sensor also, and whilst it's a great piece of kit, hearing the alarm which tells me I'm going low doesn't half send me in to a panic. Same with seeing the arrow pointing down, I'm in a state of fear thinking I'm going to drop so low that I'm going to die. I know it sounds dramatic but it's really taking its toll on me now. But I don't want to stop wearing it because it does do it's job of alerting me which is better than not.

Hitting a point in life were I'm feeling really fed up of diabetes now, the worry of being too high and reading about complications, and the worry of going low and dying from it. Not sleeping very well worrying about my blood sugars whilst I'm trying to drift off, and waking up in the night multiple times to check and adjust them. Having a pounding heart every time I take some insulin. I've never been that bothered, I've always just shrugged my shoulders and said it is what it is and I've adapted to being diabetic, no problem. I just can't get this attitude towards it back.

Any pointers in the right direction from anyone else would be great.

I'm going to book in with the diabetic nurse next week but just asking/venting in the meantime.

Thanks.

 

[Grant_Vicat]

Hi @John8 I am not able to advise on dosing, but would just make 2 observations. One is that at this time of year viruses abound and can wreak havoc with BG results, even if you have no symptoms. Secondly it is clear that you are stressed out by this which can also raise BG levels. I had Type 1 for 54 years and in that time I had a number of hypos causing unconsciousness. Yet I am writing this now! That is not to say that hypos should not be taken seriously, but that they do not mean certain death. In my experience of them it was more likely that the circumstances could cause death rather than the hypo itself. Obviously if you spend a lot of time alone this raises the risk of not being attended to. If your alarm goes off I would tend to think of it almost like another person keeping an eye. Yes I have had complications, but at 66 I am not prevented from doing anything other than the usual things a Type 1 might be barred from. I hope your contact with the diabetic nurse brings you a satisfactory outcome.

 

[heatherparris]

I have been diabetic T1 for 50 years and I have the same concerns varying blood sugars one minute low the next high. I know highs are bad for you so i take multiple bolus s to bring it down and 4hrs later I am on the low state which makes me dis-orientated. I have to turn the alarms off when I am out cos people thing the worst. My diabetic doctor does not seem concerned saying the average is OK, but it is not OK with me. Should I try a different insulin for example Fiasp, I am taking LYUMJEV. I was hoping to get the omnipod 5 but it is not available in Belgium yet, I am on the omnipod.

 

[Fairygodmother]

Hi @John8,
Type One for 55 years now and I’ve also ‘enjoyed’ a period of wildly fluctuating blood sugars in the past. I still, like many of us, have highs and lows, but the way I deal with them has been very different after doing a Dafne course.
Have you done one?
It’s very hard to live with the fear of bad nighttime hypos, and to go to sleep wondering if you’ll wake up in the morning. I really hope the DSN gives you much better strategies to deal with blood sugar control!
If you have the Libre can you show her your results on the Libre app, making sure she doesn’t just see the ‘average glucose’ but the full time in range, low blood sugar events, daily graphs etc.
You could also ask to be referred to the nearest hospital diabetes clinic.
Good luck.