Advice needed

[Alison17]

Hi everyone, I am having a break from the pump - I started closed loop recently and I really struggled with it. I was unable to sleep with the stress of it malfunctioning when I was asleep, and was completely disconnected from normal life because I couldn’t leave the house - the pump would drop me very low even in active/exercise mode. The hypos experiences were so extreme and sudden with the pump, they are horrific. I feel I would need to leave my job to manage and cope with the hypos. I think my hospital is quite keen for me to restart it, and I know lots of people have really positive experiences with using a pump. My query is has anyone ever used other medications to control the anxiety associated with hypos, and the mental toll of using a pump?

 

[Bruce Stephens]

My drs are keen for me to restart it, my query is has anyone ever used other medications to control the anxiety and the mental toll of using a pump?

I'd have thought the thing to look at is how to eliminate (or at least dramatically reduce) the hypos? It seems obviously bad if you're having extreme, sudden hypos, and it seems peculiar to me that your team would want you to restart the pump without resolving the problems?

 

[Alison17]

I'd have thought the thing to look at is how to eliminate (or at least dramatically reduce) the hypos? It seems obviously bad if you're having extreme, sudden hypos, and it seems peculiar to me that your team would want you to restart the pump without resolving the problems?

Thanks Bruce, the nurses explained that the pump is on the most relaxed settings.. it has 3 options to bring patients into target range, 6.7, 6.1 and 5.5 (I think!) and they had relaxed the carb ratios. I am not sure what else they would be able to do… I didn’t really experience any difference when the pump was in the active mode to normal mode but I am very new to pumps and have been on pens for most of my life, so it might be that I am missing something obvious!

 

[Bruce Stephens]

so it might be that I am missing something obvious!

Might well be. (I've never used any kind of pump.) Regardless, it's surely unreasonable to ask you to use something that causes bad enough hypos that you feel you'd have to give up your job to manage them. That's not what we want from HCL!

 

[SB2015]

Hi everyone, I am having a break from the pump - I started closed loop recently and I really struggled with it. I was unable to sleep with the stress of it malfunctioning when I was asleep, and was completely disconnected from normal life because I couldn’t leave the house - the pump would drop me very low even in active/exercise mode. The hypos experiences were so extreme and sudden with the pump, they are horrific. I feel I would need to leave my job to manage and cope with the hypos. I think my hospital is quite keen for me to restart it, and I know lots of people have really positive experiences with using a pump. My query is has anyone ever used other medications to control the anxiety associated with hypos, and the mental toll of using a pump?

Hi Alison I am sorry to read that you are feeling so anxious about using a pump, but there are others on here who have chosen to take a break at times.

I had a year of taking medication for my anxiety, although mine was associated with setting myself totally unrealistic expectations of myself in managing my levels. I was striving for perfection which I had not accepted was impossible. I used amitriptalyn along side getting counselling.

As @Bruce Stephens has said it would be worth looking at why you are experiencing hypos. The looping should reduce those, and for me has virtually eliminated night hypos, allowing me to sleep comfortably through the night with no concern for diabetes. Which system were you using? Some people find the position of their sensors causes false hypos and this would cause problems with looping. I have sufficient spare space on the back of my upper arms that this is not an issue for me. Moving a sensor can make a lot of difference.

When I started looping it took me a long while to trust the system to do what I had been doing for so long. I constantly interfered with it and that prevented the pump from working things out properly. I gave up but then with support from an excellent DSN went back and tried again. I am so pleased that I did. I have now been using it for nearly four years and will have the same one again at pump changeover, but with new sensors.

 

[Saoirse]

Hi. I agree with all that’s been suggested by @SB2015 above. Overall I think looping is a great thing, but it’s not perfect and takes some getting used to. Ultimately you need what works for you and if looping atm is causing more stress than benefit then I would think you should be supported to take a break and use the tech out of loop until/if you feel ready to go back. If you let us know what system you have it likely someone on here is using it and may be able to share experiences.

 

[trophywench]

My second question after whatever pump is that - is, did they/you automatically reduce your TDD basal by about one third, to begin with?

 

[nonethewiser]

Thanks Bruce, the nurses explained that the pump is on the most relaxed settings.. it has 3 options to bring patients into target range, 6.7, 6.1 and 5.5 (I think!) and they had relaxed the carb ratios. I am not sure what else they would be able to do… I didn’t really experience any difference when the pump was in the active mode to normal mode but I am very new to pumps and have been on pens for most of my life, so it might be that I am missing something obvious!

HCL should dramatically reduce hypos not increase them.

Obvious question is where you calibrating Libre/Dexcom sensors at all, if they were giving incorrect readings then your pump will adjust insulin accordingly.

Another thing, not sure what they mean by relaxed settings but are they proper pump nurses, as in a dsn who has had specialist training on pumps & are best to advise on making adjustments to your pump settings, ask this as not all dsn are pump trained.

 

[SB2015]

Thanks Bruce, the nurses explained that the pump is on the most relaxed settings.. it has 3 options to bring patients into target range, 6.7, 6.1 and 5.5 (I think!) and they had relaxed the carb ratios. I am not sure what else they would be able to do… I didn’t really experience any difference when the pump was in the active mode to normal mode but I am very new to pumps and have been on pens for most of my life, so it might be that I am missing something obvious!

I suspect from those target options that you were using the Medtronic 780, but correct me if I am wrong. I use the middle value, 6.1 as my target as I want fewer hypos and the lower target required more intervention by me. This seems to work for me.

It could be that your carb ratios are giving you too much insulin, so perhaps they mean that they have changed the se to reduce the bolus insulin with your meals. Are you confident to make your own changes to a pump. When I started in this pump it was new to me and I was glad that I used it in manual mode for a month before going into the looping. This ensured that I was confident about the options available and also checked my carb ratios. I also adjusted my basal profiles. These are not used once in Smartguard (looping) but the pump bases its decisions in your past basal insulin from the previous 6 days. This means that when first going into Smartguard it will be a bit wobbly if you were wobbly in manual.

Having said all that if a break from pumping is what you need at present then ask them to support you in this.

Let us know how things go.