Any Type 1s on Rybelsus or Ozempic

[Jen73]

Hi
New to the group but not to diabetes. Type 1 40+ years. Consultant put me on Ozempic this time last year then due to supply probs changed to Rybelsus in July. Struggling with dealing with inevitable lows - seems to take a lot longer for readings to return to normal - assuming because the tablets slow the release of glucose from food into blood stream. Any other type 1s on similar med that has found a solution?

 

[goodybags]

Hi @Jen73, welcome to the forum
I think I’ve seen other T1’s post about wanting to be prescribed GLP-1 type medication
but were unsuccessful in persuading GP’s to prescribe

 

[Leadinglights]

Hi
New to the group but not to diabetes. Type 1 40+ years. Consultant put me on Ozempic this time last year then due to supply probs changed to Rybelsus in July. Struggling with dealing with inevitable lows - seems to take a lot longer for readings to return to normal - assuming because the tablets slow the release of glucose from food into blood stream. Any other type 1s on similar med that has found a solution?

That does seem to be one of the problems with Rybelsus in risking low blood glucose when taken in combination with insulin which may be why not many are prescribed it.
Why were you prescribed it as there do seem to be some risks about both those medications causing low blood glucose.

 

[Jen73]

That does seem to be one of the problems with Rybelsus in risking low blood glucose when taken in combination with insulin which may be why not many are prescribed it.
Why were you prescribed it as there do seem to be some risks about both those medications causing low blood glucose.

Prescribed for weight loss and to help lower post meal readings - was also told may protect against heart disease. Have found that usual pre meal dose of fast acting insulin has to be delayed until some time after meal as insulin was hitting my system quicker than the food!

 

[rebrascora]

Hi and welcome to the forum.

What do you use as a hypo treatment?

I would concentrate on getting the absorption of glucose from whatever you use through your mouth as I don't think the medication will affect that and absorption through the mouth is generally quicker and closer to the brain for getting it back up and running sooner. So if you use sweets like jelly babies or glucose tablets chew them well and keep them in your mouth as the glucose will absorb through the cells inside your mouth and get absorbed into the blood stream there, rather than a couple of chews and swallowing them and them then sitting on any undigested food still in your stomach. Same with a liquid hypo treatment. Swill it around inside your mouth lots rather than just gulping it down.

The two other things which occur to me are.....

1. Are you relying on Libre or other CGM to check your recovery from a hypo, if so, don't! Use a finger prick and BG meter to check 15 mins after taking your hypo treatment. Libre and probably other CGMs will usually show your levels continuing to drop at that 15 min check due to the algorithm they use, whereas a finger prick will usually show you recovering, so it may be that you are recovering as quickly as you did before, but Libre/other CGM is suggesting otherwise. This is one of the key times that CGMs are not to be trusted, when levels were rising or falling fast and then change direction suddenly, due to insulin when correcting a high or glucose in the case of a hypo.
2. Have you identified why you are having the hypos? If you are losing weight on these medications, could it be that you need to reduce your basal insulin. Which basal insulin are you using? Do you know how to do a basal check?
Are you carb counting and reducing your meal time insulin in line with eating smaller meals, which I believe the medication leads you to do. Hopefully it isn't because you are vomiting, which I understand is one of the more severe effects it can cause.

Were you having problems with insulin resistance and needing to progressively increase your doses over the years to keep your levels in range? If so, then as above, reducing doses will be needed as the insulin resistance is reduced.

As regards spiking high after meals, that is generally resolved by carefully increasing your prebolus timing. I used to need more than an hour between injecting and eating breakfast with NovoRapid and about 30 mins at other times of day, otherwise I would spike up to 15mmols after breakfast every morning and then come crashing back down later, which was not very pleasant and not good for my body. I changed to a faster insulin (Fiasp) in the end but I still need between 30 and 45 mins between injecting and eating breakfast most mornings.
I understand that with your current medication, which slows your digestion, you will need to inject later rather than earlier but it seems like a drastic measure to prescribe these meds for that particular issue, but I guess if you needed help losing weight then that was perhaps an added bonus but surely not at the risk of suffering frequent hypos which are considered a more serious issue than post meal spikes.

Anyway, I hope some of the above info is helpful, but if you can tell us a bit more about when seem to be most prone to these lows and what you think might be causing them, we can perhaps suggest things that work for us..... an important one being to raise the low alarm level on your CGM. Where do you currently have it set?

 

[Jen73]

Hi
Thank you so much for your detailed reply. I use Dextrose energy tabs for hypo treatment. I did not know about absorption through the cells in mouth so will try to suck them to keep in mouth longer.
I do use libre for checking levels and though I think was told at outset that not as timely a reading as a finger prick I had forgotten that so next low I will check with finger prick after hypo treatment and see what that shows. Also low alarm on libre was raised for 3.5 to 4.0 but thin then maybe raise this again to 5.0 or even 5.5?
Yes to carb counting and adjusting for smaller meals and thankfully no sickness. Definitely had insulin resistance as ratio climbed dramatically over the years.
Common times for lows are overnight (c3am), post breakfast (c8:30am which is the worse as trying to get to work!) and often pre-dinner (c7pm).
Knew that insulin needs would drop. Hypos arising as still trying to adjust basal and if there is guidance on this would be appreciated. Thought had basal right and was working on bolus amount adjustments but these more difficult due to trying to coincide with right time for dose. Such a battle when you lead a busy life!
Considering if pump may be the way to go - but would still have to have landed on correct basal and mealtime ratios!

 

[rebrascora]

Which basal insulin are you using and when do you take it?

Lows at 3am are a good indication that your basal is still too high and it may well be an ongoing case of reducing it as these meds have the desired effect. The basal insulin you use might also not be suiting your needs. There are different basal insulins with different profiles of activity and differing levels of flexibility. For instance Tresiba is a very long acting (approx. 36 hours) and very stable insulin, which can be great for when you just want to keep things ticking over and you have pretty stable basal needs but it can be challenging if you need to regularly adjust your basal insulin. I have Levemir which is probably the shortest acting insulin and is usually taken twice a day although there is some overlap of activity of each dose but I often need to adjust it on a day by day or more usually for me a night by night basis depending upon activity levels to prevent hypos. It is much more flexible if your body needs that adjustment. The two doses can be adjusted to match what you need, so for me, I need more in the morning but less at night, so I can inject more in the morning and just have a very small dose in the evening, to prevent nocturnal hypos.

The other thing to consider is whether the nocturnal hypos are genuine ones or what we call "compression lows" which can happen when you lie on the sensor. This puts pressure on the tissue under the sensor that the filament is sampling and causes it to give false low readings, so it is a good idea to always double check any night time lows with a finger prick before taking a hypo treatment, unless you feel obviously hypo. If the low alarm goes off and I wake up lying on the Libre arm, it is most likely a compression low and a quick look at the graph will usually show a sharp dip in levels which is another characteristic of a compression low because when basal insulin causes a low or hypo, it is usually a slow steady descent rather than a more noticeable dip. Gradually you do get used to identifying compression lows without having to finger prick but initially it is a good idea to double check until you are confident to be sure you know when it is genuine and when it is a false low. You certainly don't want to end up in a situation where you ignore a genuine low.

Raising your low alarm above 4 is definitely a good idea. Some people fine 5 or even 5.5 really helpful, but I found I ended up with more hypos because the alarm would go off and because I sleep best in the 4s and 5s I wouldn't want to treat it at that level and push it up into the 6s or above so I would just go back to sleep and then get no alarm until I was obviously hypo and wake up because of it. For me 4.5 seems to be a good level but others much prefer to set it higher. I also know that I respond very quickly to eating jelly babies, so I can recover from a 4.5 even with a vertical downward arrow, quickly enough to prevent a hypo with 2 JBs chewed up well, Libre may well still show me hitting the red because of the algorithm I mentioned but often when I look at the daily graph later, the line doesn't go into the red, even though it might have given me a reading of 3.6 at one point. This is why you should not use/trust Libre for assessing hypo recovery or in fact assessing your hypo awareness.

 

[Proud to be erratic]

Hello @Jen73, with over 40 yrs as T1 you will know more about yourself and your D management than I am likely to ever learn.

Can I ask what CGM you are using and how long you have had CGM? I have a bit of pedant in me that too frequently screams out why do people feel they should use the CGM notifications about their BG as "Alarms" (Libre vocabulary) rather than timely "Alerts" (Dexcom vocabulary)? I can imagine that someone who's spent their first 35+ years without CGM has become conditioned to needing hypo alert signals to prompt some carb treatment/ response; this conditioning might lead to a sense of I'll set my CGM "Alarm" at 3.5 or even 4.0. Rather than as an "Alert" at 5 or even 5.6 for the Libre low limit. Then hear or feel the vibration/ message, eat a biscuit or similar and carry on with whatever you are doing.

The older we get the more important it becomes to just stay away from being unduly low. Neuron damage can so easily lead to cognitive impairment, which is pretty well irreversible and while there is plenty of research into dementia etc, only limited treatment paths exist. So, for me, despite the inconvenience of sometimes being woken in the night by a low Alert at 5.6 (or even higher with G7) it's very easy to wake my phone, assess whether my BG is really falling or there is just a "twitch", grab a sweet or a small biscuit and go back to sleep. I should add that, because I have Tresiba as my basal and being a 75 yr old male, I have really tuned my Tresiba to give me NIGHT BG graphs to be rock steady and level most nights.

Regardless of my pedantic scream, a warm welcome to the Forum.

 

[Jen73]

Which basal insulin are you using and when do you take it?

Lows at 3am are a good indication that your basal is still too high and it may well be an ongoing case of reducing it as these meds have the desired effect. The basal insulin you use might also not be suiting your needs. There are different basal insulins with different profiles of activity and differing levels of flexibility. For instance Tresiba is a very long acting (approx. 36 hours) and very stable insulin, which can be great for when you just want to keep things ticking over and you have pretty stable basal needs but it can be challenging if you need to regularly adjust your basal insulin. I have Levemir which is probably the shortest acting insulin and is usually taken twice a day although there is some overlap of activity of each dose but I often need to adjust it on a day by day or more usually for me a night by night basis depending upon activity levels to prevent hypos. It is much more flexible if your body needs that adjustment. The two doses can be adjusted to match what you need, so for me, I need more in the morning but less at night, so I can inject more in the morning and just have a very small dose in the evening, to prevent nocturnal hypos.

The other thing to consider is whether the nocturnal hypos are genuine ones or what we call "compression lows" which can happen when you lie on the sensor. This puts pressure on the tissue under the sensor that the filament is sampling and causes it to give false low readings, so it is a good idea to always double check any night time lows with a finger prick before taking a hypo treatment, unless you feel obviously hypo. If the low alarm goes off and I wake up lying on the Libre arm, it is most likely a compression low and a quick look at the graph will usually show a sharp dip in levels which is another characteristic of a compression low because when basal insulin causes a low or hypo, it is usually a slow steady descent rather than a more noticeable dip. Gradually you do get used to identifying compression lows without having to finger prick but initially it is a good idea to double check until you are confident to be sure you know when it is genuine and when it is a false low. You certainly don't want to end up in a situation where you ignore a genuine low.

Raising your low alarm above 4 is definitely a good idea. Some people fine 5 or even 5.5 really helpful, but I found I ended up with more hypos because the alarm would go off and because I sleep best in the 4s and 5s I wouldn't want to treat it at that level and push it up into the 6s or above so I would just go back to sleep and then get no alarm until I was obviously hypo and wake up because of it. For me 4.5 seems to be a good level but others much prefer to set it higher. I also know that I respond very quickly to eating jelly babies, so I can recover from a 4.5 even with a vertical downward arrow, quickly enough to prevent a hypo with 2 JBs chewed up well, Libre may well still show me hitting the red because of the algorithm I mentioned but often when I look at the daily graph later, the line doesn't go into the red, even though it might have given me a reading of 3.6 at one point. This is why you should not use/trust Libre for assessing hypo recovery or in fact assessing your hypo awareness.

Many thanks again Barbara. I am on Lantus for basal and have just reduced by another 2 units to see what effect that has. I take it at 7:30am daily which suits my daily routine. I was on Levemir for a period some years ago but found one dose wasn’t lasting the 24 hours and when moved to 2 found it very difficult to work with thus the move on to Lantus.
I have never heard of a compression low before so next low showing on CGM I will check with finger prick. Funny u mention a 3.6 not showing on the daily graph later as I have noticed similar on occasions and until now did not understand why! Think I will trial the libre alarm at 5.0 and see if that helps.
Thanks again

 

[Jen73]

Hello @Jen73, with over 40 yrs as T1 you will know more about yourself and your D management than I am likely to ever learn.

Can I ask what CGM you are using and how long you have had CGM? I have a bit of pedant in me that too frequently screams out why do people feel they should use the CGM notifications about their BG as "Alarms" (Libre vocabulary) rather than timely "Alerts" (Dexcom vocabulary)? I can imagine that someone who's spent their first 35+ years without CGM has become conditioned to needing hypo alert signals to prompt some carb treatment/ response; this conditioning might lead to a sense of I'll set my CGM "Alarm" at 3.5 or even 4.0. Rather than as an "Alert" at 5 or even 5.6 for the Libre low limit. Then hear or feel the vibration/ message, eat a biscuit or similar and carry on with whatever you are doing.

The older we get the more important it becomes to just stay away from being unduly low. Neuron damage can so easily lead to cognitive impairment, which is pretty well irreversible and while there is plenty of research into dementia etc, only limited treatment paths exist. So, for me, despite the inconvenience of sometimes being woken in the night by a low Alert at 5.6 (or even higher with G7) it's very easy to wake my phone, assess whether my BG is really falling or there is just a "twitch", grab a sweet or a small biscuit and go back to sleep. I should add that, because I have Tresiba as my basal and being a 75 yr old male, I have really tuned my Tresiba to give me NIGHT BG graphs to be rock steady and level most nights.

Regardless of my pedantic scream, a warm welcome to the Forum.

Many thanks for the welcome. I use libre 2 plus CGM and have done (on earlier version) for around 5-6 years. You make a good point on the wording used - I am “alarmed” when I see a 3.6 (and probably overeat causing a high later on) and would prefer to be “alerted” at 5 or 6 giving more timely management. Was going to raise my current libre alert from 4.0 to 5.0 but think now might move it on to 5.5!