Pumps and hypo-anxiety - grateful for thoughts

[Odin004]

Hi all,

I'd be really interested to hear any thoughts from people who used to take insulin injections, who have moved to using a pump. It's something I'm considering, after having taken injections for 15 years - I've spoken with my diabetes team, who are excellent, and have learned much about pumps and the various advantages they have over injections. I already wear a Dexcom G5, so am used to having something attached to me (albeit smaller than a pump). I'm not concerned in the slightest about body-image issues, or the social or practical side of wearing a pump.

A year ago, I had a very bad hypo, which changed my approach to managing my diabetes, and to insulin; in particular, I developed a severe hypo-anxiety, and for quite a while, I ran my sugars very high to avoid the possibility of lows. I lost 10kg over the year, and I think I'm only now on the road to recovery. I have since started a low carb diet to limit the amount of insulin in my system at any one time, which I'm much happier with, and my sugars are now thankfully under much better control; however, the (perhaps irrational) worry of hypos, although to a lesser extent, is still very much part of my life.

A pump sounds like an excellent idea; but the anxiety about hypos causes me to worry about being permanently connected to a reservoir of fast acting insulin - my mind just defaults to thinking about what would happen if the pump malfunctioned in some way and delivered too much insulin in one go. I'd be interested to know if anyone else has worried about this, and how those worries were overcome; I know this must sound quite silly to experienced pump users, so my apologies, but any thoughts would be most welcome!

 

[azure]

I worried about that when I was considering a pump @Odin004 This was about 13 years ago and even then the pumps were fantastic. The pump rep explained to me that there were two chips inside and that one was constantly monitoring the other. He really convinced me that I could trust a pump The technology now is even better.

I had hypos because no basal insulin suited me. A pump is a whole different kettle of fish. My basal is exactly matched to my body's needs so I don't have to worry about unpredictable basal

I'd also add that bolusing on a pump is far more accurate too so there's less worry about getting after meal results wrong

 

[azure]

I also meant to add that my pump - the Animas Vibe - supports Dexcom. I don't have Dexcom because I can't afford it, but I often dream of how perfect that would be

 

[Odin004]

Thank you @azure for your reply, that is very reassuring to know - and I'm very glad to hear the pump has been working so well for you for 13 years. I can see how accurately matching the basal would remove much of the uncertainty; I currently take Levemir in a split dose, but there does seem to be some considerable variation in my carb/insulin ratios throughout the day, and I'm sure in large part, that's due to the peaking of the Levemir at various times. It's definitely not a "flat" profile. I suppose for me, the hypo issue is just more of a mental hurdle to overcome. Regarding the Dexcom, I believe some pumps have built in CGM? Although I'm quite confident you'd probably know more about that than me!

 

[azure]

@Odin004 I think a bad hypo can have a long term effect so it will take a while to regain your confidence. I hope the CGM is helping a little with that.

Rather than me attempt a rubbish technical explanatiin, I'll link you to a video about the Vibe plus Dexcom. The man whizzes through everything but it will give you an idea.

Here we are:

The basal reservoir with MDI is what didn't work for me. If you think about it, the unpredictability of that injected basal deposit is far more random/scary than the predictable tiny pre-programmed basal release from a pump.

I love my pump. It changed my life and gave me my freedom back

 

[Odin004]

Thank you very much @azure for the video - a very useful introduction! The CGM has helped me in some ways - but strangely, I find that the extra information can also be a new source of anxiety, especially when you can see your sugars on a downward trend. It's difficult to not over react to what's happening - and I naturally tend to over-think things anyway, which isn't always helpful. The positive for me is that the Dexcom sets off an alarm at a user-defined sugar level, which should make hypos a thing of the past (in theory). I agree with your comments about the scariness and randomness of the basal injection - I've never really been happy with insulin injections at all (which in the circumstances, is of course rather unfortunate!)

 

[noblehead]

A pump sounds like an excellent idea; but the anxiety about hypos causes me to worry about being permanently connected to a reservoir of fast acting insulin - my mind just defaults to thinking about what would happen if the pump malfunctioned in some way and delivered too much insulin in one go. I'd be interested to know if anyone else has worried about this, and how those worries were overcome; I know this must sound quite silly to experienced pump users, so my apologies, but any thoughts would be most welcome!

In truthfulness I'd imagine that has crossed all our minds before starting on a pump, it's human nature to worry about the things that could go wrong as well as focusing on the positives.

What you have remember @Odin004 is pumps have been around for several decades now and the tech in them is astounding, a lot of it is beyond my comprehension but pumps will have a safe guard built in to prevent the pump delivering more insulin than it is programmed to deliver (as in a malfunction scenario that you've described), the pump rep will explain more to you if and when you do start on a pump.

Just one other thing, if you worried about human error (as in bolusing too much insulin then fear not), you can set a maximum dose in the pump settings where the pump won't deliver above that limit, I have this feature on my Omnipod pump and it's a great safeguard to prevent over-bolusing, plus if all pumps are like the Omnipod there's a series of procedures to go through where the pump asks you to confirm the bolus dose before the insulin is delivered.

I've been pumping for two and half years and have to say its been life-changing, have far fewer hypo's on a pump then I did on MDI. Best wishes and good luck.

 

[tircoed]

Have a look at the medtronic i think its a 640 this has a cgm that will stop insulin delivery when it detects your sugars are going low and restarts when they reach a set level i was offered this it looks really good

 

[Odin004]

Thank you very much @noblehead for your reassuring comments - I do like the possibility of setting a maximum bolus. I'm certainly giving the whole issue of a pump some serious thought; I can't find one person who doesn't say it's changed their lives.

Thank you also @tircoed for the tip - that sounds like an excellent feature, and I will definitely have a look at this!

 

[noblehead]

Thank you very much @noblehead for your reassuring comments - I do like the possibility of setting a maximum bolus. I'm certainly giving the whole issue of a pump some serious thought; I can't find one person who doesn't say it's changed their lives.

There has been a couple of members on the forum who have gone back to MDI, pumps aren't for everyone but overall most people do love them once they get started on one.

If you do get the go ahead then purchase the book Pumping Insulin by John Walsh & Ruth Roberts, its a fantastic book and explains all about pumps and how to get the most from one, pre-pump some of it won't make sense but once your pumping you'll be glad you purchased the book. Good luck.

 

[Deleted Account]

Regarding your anxiety about being permanently attached to a reservoir of fast acting insulin:I can't comment about the Omnipod but you can easily disconnect your pump tube from yourself if you feel your blood sugars falling fast. Although, I am more likely to reduce my basal for a short period when I realise I am running lower than usual. This was never possible with MDI wher you have a fixed amount of basal onboard.

Hypos and exercise were the drivers for me to have a pump. Although I still have some hypos, they are easier to minimise by a little bit more planning when I do exercise by reducing my basal before a run.

 

[Odin004]

Thank you once again @noblehead - I will certainly get that book.

Thank you also @helensaramay for your reply - that is very good to know!

 

[joanne75]

Hi

I feel exactly the same was as you, I had a bad hypo probably about 14yrs ago which left me unconscious and for about 5yrs after I suffered really bad anxiety to the point where I couldn't bare to go into social situations with the over whelming fear of having an hypo which lead me to test between 10-20 times a day and also ran my sugars high for a very long time and it was fear that drove me, since this happened I still suffer in certain situations with anxiety although not as bad. I think its almost like a fight or flight situation that just seems to take over your whole life.

I have since been through a pregnancy and managed very well and am now going to be going onto the Omnipod pump in July which is going to be a whole new ball game for me but am also really excited about it, I am hoping I will have more flexibility, better control and I like the fact that there is no long acting insulin and that you can Bolas in small amounts and therefore can be more accurate in how much you take, im hoping it works out for me.

Good luck if you decide to go with a pump

 

[donnellysdogs]

After almost losing my driving licence in 2010 from a hypo and getting a pump...
it can be absolutely brilliant.
I got one 4 weeks after my incident (nurse on hol for 2 weeks) and it changed my hypo's totally, even though I am back on MDI for last 25 months.

 

[tim2000s]

@Odin004 - you might find these links interesting in looking at the 640G and SmartGuard. They cover myself and others use of it and its effectiveness. It's really the first step on the road to an artificial pancreas and very effective, as long as you get on okay with the Medtronic Sensors, so worth asking for a trial.

http://www.diabettech.com/artificia...d-smartguard-into-the-glastonbury-2016-wilds/
http://www.diabettech.com/artificia...-own-activity-and-a-few-useful-lessons-gbdoc/
http://www.everydayupsanddowns.co.uk/2015/09/64-days-with-minimed-640g-ep-9-review.html

 

[Odin004]

Hi @joanne75 - I'm sorry to hear that your hypo all those years ago is still affecting you like this; it certainly sounds as though we've had a very similar experience. Believe me, I know what you mean about testing 10-20 times a day - I actually got CGM after my hypo (Dexcom G5), which gives you sugar readings every 5 minutes - however, I found that I just ended up checking the readings every 5 minutes, so in a way, that increased the anxiety somewhat.

I understand that these experiences are called "life events" and they do stay with you in some way or other; the brain is designed to recognise and respond to new dangers, to keep you safe - as you say, the fight or flight situation - however, when taking insulin itself becomes the "danger" that your brain recognises and reacts against, it's not hard to see how this can have a huge impact on a type 1 diabetic - after all, it's something we have to do multiple times every day. The pump sounds like a very positive step for you, and I hope it works for you too - @noblehead above provided some useful info on the Omnipod above in the thread - I'd be very interested to hear your thoughts on it once your used to it - and good luck!

Thank you @donnellysdogs for your reply - I'm sorry to hear you nearly lost your licence - and although you're back on MDI, it's good to know you had such a good experience with a pump - the more I hear about pumps, the more positive I become.

Thank you also @tim2000s for those links - I've read all of them, and found them extremely interesting reading - some of the technology we're capable of is truly amazing.

 

[eabhamurphy]

Hi,
I just started the pump four days ago. I can understand your hypo anxiety. I had a number of traumatic hypos while pregnant that were just awful. It is my frequency of hypos and my being stressed with dealing with them and then my avoidance of them which causes my BG to go really high which causes anxiety as well! My HBA1c has always been pretty good (42) so it was the hypo issue that lead to my getting the pump.
Pump is a huge learning curve but already I'm seeing much flatter profile and a real sense of control. I was waking up with headaches everyday from highs and lows in the night and have felt brilliant the last couple of mornings. I also use a freestyle libre so can see the patterns my BG follows but until now lacked the ability to dose properly based on these readings.
Im a complete newbie but I think you will love the pump. You can deliver such small doses to cover small snacks or low carb meals and in this way avoid hypos.

 

[Odin004]

Hi @eabhamurphy - thank you for your reply; I'm very sorry to hear of your hypos while you were pregnant, that's a horrible thing to have to deal with at such a time - but I'm very pleased indeed to hear that the pump is working so well for you, after only such a short time! Did you ever have any reservations about going on a pump, before you started on one? - and as someone who's experienced hypos, I'd be interested to know whether you worried (or worry) about being connected to insulin all the time?

 

[eabhamurphy]

Yeah my reservation intially were hypos and also my perception that being connected 'permanently' to a device that delivered insulin would 'get in the way'. The latter was a bit silly now in hindsight. I now have a little bit more anxiety about not having any insulin at all rather than having too much, for example if I connect pump incorrectly etc I could be completely without any insulin in a matter of hours. But there are ways of safeguarding against this by making sure you have supplies and backup fast acting pen just in case.
The insulin infusion rate is so low that it doesn't freak me out to be connected 24/7. I have full visibility with my CGM so can see a trend quickly as well. It is also much easier to correct hypos now. For example since starting the pump 12g corrects a hypo, 15g is too much. With MDI I would sometimes need a crazy amount of carbs (50g) to bring back up blood sugars, but then when I lowered my lantus even slightly I got massive highs!
I really hope you can come around to the ideal to give the pump a go. I feel so much better in the mornings without having my hypos and highs. I really feel this is already and is going to really improve the quality of my life.
One particular 'complete loss of consciousness' low from last year sticks in my mind, it really was traumatic. I can understand your wanting to avoid these and a pump could really help achieve this! Or at least that is my view in the last four days!

 

[Odin004]

Thank you @eabhamurphy, what you've said is very reassuring, especially from someone so new to a pump - it must be a fantastic feeling to be so in control; and very interesting that you're now more concerned about having no insulin at all, rather than too much! Yes, I suppose keeping a close eye on it is key, as is having supplies and a backup pen.

I used to use the Libre, but now use the Dexcom G5 - I prefer it, as you can set an alarm to go off when your sugars reach a certain (user-defined) level. I got the Dexcom to warn me of sugars going low - but, if you're worried about a lack of insulin (i.e. while sleeping) the Dexcom would sound an alarm when your sugars reach a pre-defined high - which in turn could allow you to check that the pump is delivering insulin correctly - a bit more expensive, but worth a thought perhaps?

Your comments about the advantages of a pump echo those of many others who have kindly provided me with advice on this forum - I think my problem is over-thinking things (can't help it, it's just the way I've always been!) - and the question of "What if it malfunctions in some way" is the only barrier; however, as with most things in life, I suppose I'd feel differently once I actually try it.

Again, I'm sorry to hear of your traumatic hypo - can I ask, did that experience cause you to worry about actually injecting insulin at all? For me, my hypo made me paranoid about even small doses (like 2 or 3 units) - for example, I'd worry about the possibility that all the insulin would act immediately, rather than over a few hours (illogical I know - but couldn't help the constant feeling that I accidentally hit a vein or something); also, when sugars did go a little low, instead of thinking "Oh, no problem, I'll just have a little Lucozade" - I would instead think "That's it, I'm going to pass out and go into a coma - there's nothing I can do to stop it - I'd better text my family" (!) - strange I know, and irrational - how the mind works in mysterious ways!