Struggling for the first time!

[Sarahkylie88]

I've been diabetic for 19 years. I've always been well controlled.

I went on the omnipod pump last year in preparation to become pregnant again. (My last pregnancy was ok but I suffered terribly with dawn phenomena so it was decided that if we wanted to try again I needed a pump)

I chose the omnipod because it's wireless and suited my busy lifestyle. I didn't think I would but I loved it straight away!! My hba1c was 5.8% while ttc and during my pregnancy. I had a very complicated pregnancy (not diabetes related)y son was born at 27 weeks by emergency c section. He lived for 6 precious weeks before passing away from an infection

Since then I have not been able to get back on track with my sugars. It's really stressing my out! I've spoken to my diabetes nurse who is an amazing support but is also scratching her head! There seems to be no rhyme or reason to them and I feel I'm constantly chasing them! Settings that work one day don't the next and for nothing different!!!! It's so frustrating and is dragging me down so badly!! I feel like giving up on the pump and going back on injections, but I know how amazing it can be when it's all working correctly! And I would like to ttc later in this year (possibly 10-12 months after my section which would be July-September)

So I need my pump! I just feel I've lost my way and I can't find it back, but it's not through want of trying! Don't get me wrong my sugars aren't horrendous! My last hba1c was 6.7% but it's the uncertainty of it all I just don't know where I am with it! sorry for the moan I'm just lost! And I know people my think what am I moaning about it seems well controlled, it's only because I'm on top of it reacting to what my tests say.

Some days after breakfast it's 15/13/10 other days it's 4!? Same after tea! I just don't get it!!!

Also sometimes I've had hypos in the night, the next night I'm 11 all night and wake up feeling like rubbish!!! It's horrible

 

[azure]

Hi @Sarahkylie88

Has your doctor done a few general tests to make sure there's nothing else affecting your sugars eg a hormone imbalance, etc?

Could it be due to worse absorption from your pump sites maybe? Or variable absorption, depending on the area used. When one of my pump sites 'runs out', I see erratic sugars that tend towards high.

 

[Sarahkylie88]

Thanks @azure. No, they haven't, I'm at clinic on the 7th of march and they will do my full bloods before then. I may ask when I'm back at the nurse this week. She did mention the possibility of metformin x

 

[Sarahkylie88]

I think my pump sites r ok. I have bruised lower down my stomach with the last 2, but I haven't used there in a while due to pain from my c section x

 

[mist]

I think my pump sites r ok. I have bruised lower down my stomach with the last 2, but I haven't used there in a while due to pain from my c section x

I get a puffy stomach when I inject, do pumps do that to you?

 

[Juicyj]

Hi @Sarahkylie88 Feel free to moan, you are in the right place . I've heard it can take up to a year for the body to recover from pregnancy so it could be that your hormones are still balancing themselves, as its having an impact in your BG levels as @azure has said a trip to your GP's to have some blood tests done will point you in the right direction. As long as all sites are ok this is the only thing I can think of which may be giving you issues.

 

[Sarahkylie88]

Not to the same extent. My long lasting insulin used to give me a puffiness and the last 2 pods have done similar

 

[Sarahkylie88]

I am on the progesterone only pill? Could this have any sort of effect? X

 

[azure]

I am on the progesterone only pill? Could this have any sort of effect? X

Quite possibly. I'd certainly ask as I found the Pill affected my sugars a lot.

If it's not that, have you tried a new body area for your pods?

 

[catapillar]

Being on the pill doubled my insulin requirements.

You might need to take a more go with the flow approach if you are quite variable at the moment due to hormones. Basal testing a a great first step, if your confident the result is actually going to stick, but if you know today's basal rate isn't going to necessarily work tomorrow it does feel kinda pointless.

You could have a look at getting a CGM or a libre and using some sugar surfing tactics - it less about relying on fixed basal or ratios and more about reacting on the spot to what your body needs with micro boluses or micro bits of glucose. It might be worth having a look at while things are up in the air.

 

[potlots86]

Hi Sarah, I am sorry for the loss you had and now the issues you are having with your blood sugar levels.

I have never had perfect control (type 1 27 years) but over the last year I had tried to take it all more seriously. I went on to the Animas Vibe pump and have been using the Freestyle Libre for 3-4 months. There are some times when I cannot explain why all of a sudden from hours of a level BG of say 5 the next minute it is increasing rapidly and hits 9 or 10.

The only thing I can say is that letting it stress me past a certain point only makes it worse. If i obsess over it and get cross then my control goes completely off the wall and there is nothing I can do to control it again until I have calmed down and started from basics. A basal test is the best starting point, I don't know if you have already tried this? It is a process of elimination that can only be done one step at a time and that makes it even more frustrating but you have to try not to get into a viscous cycle of worry, stress, bad BG, worry, stress etc etc. I wish you all the luck in sorting things out x

 

[Scott-C]

So sorry for your loss. I've not experienced anything like that but my aunt has. She tells me that she thinks about her son/my cousin Robbie every day and knows that he would want her to be happy in life, so she is, and takes comfort from that. Mind you, she still wants to fecking destroy the guy who ran him over so maybe it's a work in progress.

I was thinking absorption too. Possibly an issue after 19 years. I'm 28 years in, always injected to the side of my stomach, thought I was maybe just putting on a bit of middle aged fat around my tummy, but realised after a bit of palpating that there's that sort of soft avocado feel there, so moved to my stomach proper and am no longer getting the post meal spikes and sudden drops I'd been getting previously.

You could have a look at getting a CGM or a libre and using some sugar surfing tactics

I'm a huge fan of sugar surfing. I went on a DAFNE course last year and they were quite insistent that we only test between meals if feeling hypo and save corrections for mealtimes. That just didn't sound right and it's not what I'd been doing for decades. However, the course aroused my interest in diabetes generally and led me to Stephen Ponder's book Sugar Surfing. It's on Kindle and if you can ignore the constant cheesy American analogies with real surfing which it's littered with, it really brings home the advantages of cgm. Got a Libre a short while later and since then have regularly been tweaking with the occasional 1u and 5gms to the point where I'd actually quite fancy a pump after years of not liking the idea of tubes (omnipod not available in my area, curses). Ironically enough, the hospital where I did DAFNE is a member of a group which publishes literature endorsing Ponder's book so one bit of it is telling me to do one thing, and another to do the opposite!

One of the advantages of the Libre is when I look at the daily graphs over thirty days. I have days when it feels like a constant rollercoaster and I tend to focus on those and feel like I'm not hacking it, but when I see the full thirty day range, it puts it into perspective: there's really only the occasional blip amongst several days in a row of reasonably flat graphs. Without seeing that, I'd probably just be remembering the awkward days. This was a surprise to me, and I hope you get the same if you try the Libre.

 

[dancer]

@Sarahkylie88 I'm so sorry for your loss. I can't imagine how you must feel.
Your blood sugar problems must be causing you a lot of anxiety. I wonder if you have been tested for coeliac disease. Last year I was diagnosed with CD and was told I'd had it for a long time but not from childhood. I think it must have started about the time of my 2nd pregnancy (my daughter is 29 now). It was during that pregnancy that my BGs started going haywire, with unexplained hypers and hypos all over the place. I am convinced this was due to CD but could be wrong. I've been gluten free for a year now but still get inconsistent BGs.
If you haven't been tested, ask. Type 1s are prone to getting CD but not all clinics test for it (I'd been Type 1 for over 37 years before I was tested).
I hope you find out soon what the problem is.