Seeking advice on getting back in control

[catapillar]

November has been really difficult for me and diabetic "control" has essentially been a distant dream:-

• 4 November - pump disconnects at some point during Friday evening. I pass out on sofa, no movement all day Saturday. A little bit more with it Sunday but still very confused with high blood sugar. New pump on, corrections in. But still not coherent & my parents call ambulance. On Sunday 6 November I'm admitted to hospital in DKA & put on sliding scale. Discharged 8 November.
• On discharge I'm fully drained & sugars are prone to dramatic spikes and fast drops. 9 November I do a few jobs to test I'm feeling ok to go back to work, exciting things like popping to tesco to pick up my prescription. I successfully complete them. And when I get home at about 6:30, I pass out hypo on my hallway floor, and come to after midnight cuddled up in a pile of broken glass having kicked over a full length mirror when I went down.
• Bloods in hospital showed raised WCC (white cell count) and CRP. Both markers for infection. But I have had no symptoms. Urine clear. Chest X-ray clear.
• 14 November back in work, exhausted, difficult to concentrate, yoyoing blood sugar.
• 18 November. Days holiday so not in work. Despite getting calls on landline and mobile I dont answer because I'm fully passed out hypo. My CGM was alarming, but it went down so fast i was unconcious before it started. My parents come to check on me and I'm unrousable and clearly not able to swallow anything. I get woken up by the paramedic starting the second dextrose infusion, frighteningly confused and drained. Blood sugar was unreadably low when ambulance arrived and after I woke it was still 2.4 and took a while to come over 4.
• 26 November. Out for dinner, pre bolus & correction drops me before dinner arrives. Talking one minute, out the next. Was out for dinner with several friends who are doctors, the conclusion was if there was a crash bell, they'd have rung it. Very distressed to have gone down so fast, so dramatically in public - I can't really remember, but they basically had to feed me.

My bloods are so far away from controlled. Woke at 3am this morning at 3.2, 3 dextrose tablets and back to sleep. At 8am my blood sugar was over 20! What is intended to be a nudge (and has previously worked as a perfectly effective nudge) now just sends bm soaring away in the direction of the nudge. Numbers are ranging from 1 - 20. The blood sugar variability is exhausting. I really don't like seeing the high numbers and the risk of over correcting is frankly dangerous as I don't have hypo awareness, CGM is at least 20 minutes behind and a "nudge" correction is currently liable to send me through the floor & I'm currently prone to actually passing out hypo. Which is horrible.

I'm trying so hard to get back in control and am struggling to see a way through it. Because previously used management techniques are not working it's really starting to feel like diabetes is disabling - like I can't go out for dinner because I'm at risk of passing out.

How do I get back in control? Is the first step to basal test? I've been thinking about trying keto because I'm definitely eating more carbs than before - is that a good idea? Any advice/thoughts would be gratefully recieved.

 

[iHs]

Get yourself tested for Addison's disease....your msg reminds me of another diabetic who had symptoms like yours

 

[Jaylee]

Wow! I had no idea that you've been having such a hard time.. Sending best wishes.

You know I'm not a pumper. But, what about checking your pump is functioning properly? Ruling that one out..?!

 

[AndBreathe]

November has been really difficult for me and diabetic "control" has essentially been a distant dream:-

• 4 November - pump disconnects at some point during Friday evening. I pass out on sofa, no movement all day Saturday. A little bit more with it Sunday but still very confused with high blood sugar. New pump on, corrections in. But still not coherent & my parents call ambulance. On Sunday 6 November I'm admitted to hospital in DKA & put on sliding scale. Discharged 8 November.
• On discharge I'm fully drained & sugars are prone to dramatic spikes and fast drops. 9 November I do a few jobs to test I'm feeling ok to go back to work, exciting things like popping to tesco to pick up my prescription. I successfully complete them. And when I get home at about 6:30, I pass out hypo on my hallway floor, and come to after midnight cuddled up in a pile of broken glass having kicked over a full length mirror when I went down.
• Bloods in hospital showed raised WCC (white cell count) and CRP. Both markers for infection. But I have had no symptoms. Urine clear. Chest X-ray clear.
• 14 November back in work, exhausted, difficult to concentrate, yoyoing blood sugar.
• 18 November. Days holiday so not in work. Despite getting calls on landline and mobile I dont answer because I'm fully passed out hypo. My CGM was alarming, but it went down so fast i was unconcious before it started. My parents come to check on me and I'm unrousable and clearly not able to swallow anything. I get woken up by the paramedic starting the second dextrose infusion, frighteningly confused and drained. Blood sugar was unreadably low when ambulance arrived and after I woke it was still 2.4 and took a while to come over 4.
• 26 November. Out for dinner, pre bolus & correction drops me before dinner arrives. Talking one minute, out the next. Was out for dinner with several friends who are doctors, the conclusion was if there was a crash bell, they'd have rung it. Very distressed to have gone down so fast, so dramatically in public - I can't really remember, but they basically had to feed me.

My bloods are so far away from controlled. Woke at 3am this morning at 3.2, 3 dextrose tablets and back to sleep. At 8am my blood sugar was over 20! What is intended to be a nudge (and has previously worked as a perfectly effective nudge) now just sends bm soaring away in the direction of the nudge. Numbers are ranging from 1 - 20. The blood sugar variability is exhausting. I really don't like seeing the high numbers and the risk of over correcting is frankly dangerous as I don't have hypo awareness, CGM is at least 20 minutes behind and a "nudge" correction is currently liable to send me through the floor & I'm currently prone to actually passing out hypo. Which is horrible.

I'm trying so hard to get back in control and am struggling to see a way through it. Because previously used management techniques are not working it's really starting to feel like diabetes is disabling - like I can't go out for dinner because I'm at risk of passing out.

How do I get back in control? Is the first step to basal test? I've been thinking about trying keto because I'm definitely eating more carbs than before - is that a good idea? Any advice/thoughts would be gratefully recieved.

I have no idea what to suggest Catapilar, but just wanted to acknowledge what must be an absolute nightmare. I really do hope things start turning around for you soon, as that's no way to live.

As a matter of curiosity; were you given any precautionary antibiotics, based on your WCC and CRP results? Sadly, infections can come along without clear symptoms.

Fingers crossed for you.

 

[catapillar]

You know I'm not a pumper. But, what about checking your pump is functioning properly? Ruling that one out..?!

Pumps working fine, doing its thing no problems. It's omnipod so the actual pump bit of it gets fully changed every three days. I can't see that it's anything going wrong with the pump.

As a matter of curiosity; were you given any precautionary antibiotics, based on your WCC and CRP results? Sadly, infections can come along without clear symptoms.

Haven't had any prophylactic antibiotics, but I had FBC done again on Thursday so maybe if that shows anything weird/off they'll try something.

 

[peterjones6000]

Just to wish you luck and hope you get sorted soon

 

[Jaylee]

Pumps working fine, doing its thing no problems. It's omnipod so the actual pump bit of it gets fully changed every three days. I can't see that it's anything going wrong with the pump.

Ah, OK. It's one on those.. I had a bass player with one. Poor begger was all over the place on it.
Is there a communication issue between the PDM & the actual pod?
Just exploring all routes...
Another waaaaay out there thought. Is have you recently aquired a new wireless device in your home?

 

[iHs]

The raise in white cell count is probably temporary because your body has gone into shock mode to try to rescue you when you had DKA but can also do this with severe hypoglycaemia needing iv glucose as well

Ask yr consultant to explain it.

 

[therower]

@catapillar. What a nightmare for you, you've been to hell .
Not a pumper so can't offer much regarding what might be going on.
Is going to MDI for a few months an option? Sometimes a new angle of attack can help to regain control.
The solution is out there it just takes some finding at times.
Stay strong and I for one wish you well.

 

[noblehead]

You've had a dreadful month @catapillar

Basal testing would be a good starting point but I really think you should ring your diabetes clinic up and ask if you can come in and see the pump consultant, sorry if you've explored this route already but it's the only thing I can suggest at this present moment in time.

Really hope you get things sorted and December is a better month for you, best wishes and take care.

 

[catapillar]

Ah, OK. It's one on those.. I had a bass player with one. Poor begger was all over the place on it.
Is there a communication issue between the PDM & the actual pod?
Just exploring all routes...
Another waaaaay out there thought. Is have you recently aquired a new wireless device in your home?

They are talking fine - I don't know what it is they talk on, but I don't think it's wifi. They need to be pretty close together to communicate

Thanks @noblehead im seeing a diabetologist on Tuesday. I'll ask about addisons then, thanks @iHs , so will see if I also need to be seen in pump clinic to check there's nothing going on with the pump. Will try and get myself stable to do some proper basal testing.

I really don't want to think about going back on mdi @therower , pumping was going so well before this. I'm not really sure it is a pump problem. I just need to figure out the steps to reset control now it's all been thrown up in the air.

 

[Jaylee]

They are talking fine - I don't know what it is they talk on, but I don't think it's wifi. They need to be pretty close together to communicate

The newer omnipods are on the 433Mhz frequency.. I think?
Lol, don't mind me! Just exploring the tech side of it all....

Indeed though, the newer the batteries & the closer to one's person the PDM is...
My old bass player used to leave his on the side at gigs. I was always reminding him to pick it up at the end of the night..

 

[AndBreathe]

Pumps working fine, doing its thing no problems. It's omnipod so the actual pump bit of it gets fully changed every three days. I can't see that it's anything going wrong with the pump.



Haven't had any prophylactic antibiotics, but I had FBC done again on Thursday so maybe if that shows anything weird/off they'll try something.

Fingers crossed for you.

Be gentle on yourself. Your body, and mind, have had a lot to cope with.

 

[Brunneria]

What a terrifying ordeal. I hope you get control back and get to the root of what has been happening.

 

[azure]

@catapillar I really hope December is a better month for,you. I don't know what to suggest except to add that if it was me and this had come on suddenly - the extreme rollercoaster - I'd be checking that all bloods had been done, inc for things like coeliac disease. I'd also see if there was a digestion issue - eg if your insulin is suddenly working before your food is being absorbed. I second the Addisons advice,,and maybe a hormone screen too, if possible (female hormones, I mean, just in case there's something haywire there that's affecting you).

A basal test is definitely a good start. I'd also then stick to a limited range of 'safe' meals to hopefully take the pressure off a bit. Boring but hopefully less chance of unforeseen highs or lows.

What insulin do you use, by the way? And is this awful rollercoaster a new thing for,you, or are you prone to fast moving sugars?

 

[CapnGrumpy]

Not sure I've got anything helpful to add, but you always come across as a bright person, so fingers crossed on figuring this out soon.

With regard to a keto diet, I'm biased and will happily burble on about it for ages, but I wonder in this case if there isn't something else happening. If you are noticeably eating more carbs than previously and you're having trouble, then the first step might be to go back to the quantities that you were eating before. From there you can judge whether control is better, or if something else is a factor.

So, as much as I'm not keen on hugging people online, ((internet hugs!)) and best wishes.

 

[Juicyj]

Hey @catapillar I thought you'd been quiet, so sorry to hear what you've been going through, glad your ok, don't have any advice to offer except I hope you get to the bottom of it soon, sending you a big hug x

 

[tim2000s]

@catapillar - I think I'd go with @iHs suggestion - ask about an Addison's test. It seems too random to be linked solely to pump and insulin.

 

[himtoo]

just sending hugs and hoping you can get sorted soon
x

 

[Robbity]

What a nightmare for you - I hope you can get it all sorted ASAP!

Robbity