3 days after major 1st DKA

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mitchsi

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Type 1
Hi,
Having returned from holiday I walked into A&E with blood levels in the DKA coma region. Complete shock to find myself T1D at 46 years of age.

Having had the diabetes team consult with info/technology/training I have full respect to those managing T1D, what planning and care is needed!

An initial concern I have is how long should I take out of work to recover from this major dka, 3 days and my levels are not yet stabilised and also to prepare myself to self regulate (&succeed) and to prepare for this new lifestyle. Appreciate advice from adults who have gone through a similar experience as mine.
I have a tonne of other questions but then I also have a tonne of reading to do.

Thanks,
 
Hi and welcome

Sorry to hear you had such a sudden introduction to diabetes. Hope it didn't impact too much on the enjoyment of your holiday... ie. You weren't ill whilst you were away. There are a lot of us late starters here on the forum. I was mid 50s when it hit me. The way I look at it I was lucky not to develop it earlier. I can't imagine how difficult it must be dealing with it as a teenager!!

I would say give yourself a month if you can. If you are an HGV or PSV driver you will need longer to log data to show that your levels are well managed before you are allowed to drive commercially. There is a lot to take in and I certainly would not expect you to stabilize your levels in 3 days or even 3 weeks as it is not good for your body and in particular your eyes to drastically reduce your levels down into range quickly. You should be looking to slowly bring them down over several weeks or months even..

Which insulins have you been started on? Do you have a Freestyle Libre or other CGM as well as finger pricking kit to monitor your levels? .
 
rebrascora said:
Hi and welcome

Sorry to hear you had such a sudden introduction to diabetes. Hope it didn't impact too much on the enjoyment of your holiday... ie. You weren't ill whilst you were away. There are a lot of us late starters here on the forum. I was mid 50s when it hit me. The way I look at it I was lucky not to develop it earlier. I can't imagine how difficult it must be dealing with it as a teenager!!

I would say give yourself a month if you can. If you are an HGV or PSV driver you will need longer to log data to show that your levels are well managed before you are allowed to drive commercially. There is a lot to take in and I certainly would not expect you to stabilize your levels in 3 days or even 3 weeks as it is not good for your body and in particular your eyes to drastically reduce your levels down into range quickly. You should be looking to slowly bring them down over several weeks or months even..

Which insulins have you been started on? Do you have a Freestyle Libre or other CGM as well as finger pricking kit to monitor your levels? .
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Hi Barbara,

Thanks for your advice, I’m 100% home office, desk bound so feel I could manage earlier but with the struggle in hospital to manage my levels it will be an effort for me at home and needs my attention.
I was also starting dka I think 3 weeks ago as I had symptoms but thought it a bug or something so the end of the hols became a bit of a struggle so I’m recovering from that but don’t feel too bad.
Just hard to know what to expect when I get home tbh interms of setting up a new lifestyle and trying to manage this. I need to inform my employer so they can plan for my late return. I was advised min 2 weeks but thought more than 2 weeks excessive but then I don’t really know.

Any idea how you developed type1? But I guess that’s the million dollar question.
And yes more fortunate to have it later if I was going to get it whatever.

Thanks,
 
Two weeks minimum sounds sensible @mitchsi You might also want to ask for some flexibility and/or reduced hours for a little while after that, just so you can get things ticking along ok and so you can fully recover from the DKA.

The cause of Type 1 is still unknown. It’s 20% genetic, 80% environmental. There’s an environmental trigger or triggers that activates it in the unlucky. This could be a virus, gut problems, trauma, certain foods, etc etc. Most people with the Type 1 genes don’t get Type 1.
 
Inka said:
Two weeks minimum sounds sensible @mitchsi You might also want to ask for some flexibility and/or reduced hours for a little while after that, just so you can get things ticking along ok and so you can fully recover from the DKA.

The cause of Type 1 is still unknown. It’s 20% genetic, 80% environmental. There’s an environmental trigger or triggers that activates it in the unlucky. This could be a virus, gut problems, trauma, certain foods, etc etc. Most people with the Type 1 genes don’t get Type 1.
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Hi Inka,

Thanks for your feedback, I’m going to wait until Monday to advise further about the duration off from work, I’ve already advised them about my condition so they’re not expecting me immediately back and by then I’ll know more.

It’s this environmental aspect that gets me, I’m trying to reflect if it was something I did, perhaps one beer too many or too much sugar on a cheat day (I have been healthy eating this year - ironically!) it’s just insane.

I also read that T1D is increasing and I think almost half of new sufferers are over 18, the prevalence in the UK is perhaps one of the highest.

There’s so much to learn it’s quite over whelming but it’s nice to have such a forum available.


Thanks again,
 
Not sure how much you have been told or know but Type 1 is an autoimmune condition, so your own immune system decided to attack the insulin producing beta cells and kill them off. It is believed that it can be triggered by a virus or trauma or even severe shock, but I think the predisposition for it may be latent and it may just be there waiting for a trigger. I think possibly a genetic disposition to autoimmune conditions because around the same time as I got Type 1, my sister developed Polymyalgia Rheumatica which is also autoimmune. I think Covid has created a lot of additional cases which would tie in with the viral trigger. I think mine and my sister's PMR was probably triggered by drastic change of hormones at menopause, but that is purely a guess. I think similarly the change of hormones during pregnancy can trigger it for some women. I see it as having had a bit of a ticking time bomb that I didn't know about until it went off. This is all just speculation on my part of course and we will probably never know the actual cause. The immune attack also doesn't usually kill off all your beta cells all at once and there was a study done in the USA I believe where people with 40, 50 and 60 years of Type 1 still had some home grown insulin production, but once you reach the point that the remaining beta cells can't produce enough insulin to balance the books so to speak, you hit crisis and DKA happens if you are unlucky.
I was lucky in that as soon as I started getting symptoms, I did all the right things (drank water by the gallon and cut carbs) and thankfully managed to dodge a DKA and hope to never experience it..... your reference to "a major 1st DKA" in the title suggests you are not expecting it to be the last, but with a bit of luck and the modern technology that we now have to manage our diabetes I would hope that we have a good chance of avoiding it more easily in the future if we look after ourselves.
 
rebrascora said:
Not sure how much you have been told or know but Type 1 is an autoimmune condition, so your own immune system decided to attack the insulin producing beta cells and kill them off. It is believed that it can be triggered by a virus or trauma or even severe shock, but I think the predisposition for it may be latent and it may just be there waiting for a trigger. I think possibly a genetic disposition to autoimmune conditions because around the same time as I got Type 1, my sister developed Polymyalgia Rheumatica which is also autoimmune. I think Covid has created a lot of additional cases which would tie in with the viral trigger. I think mine and my sister's PMR was probably triggered by drastic change of hormones at menopause, but that is purely a guess. I think similarly the change of hormones during pregnancy can trigger it for some women. I see it as having had a bit of a ticking time bomb that I didn't know about until it went off. This is all just speculation on my part of course and we will probably never know the actual cause. The immune attack also doesn't usually kill off all your beta cells all at once and there was a study done in the USA I believe where people with 40, 50 and 60 years of Type 1 still had some home grown insulin production, but once you reach the point that the remaining beta cells can't produce enough insulin to balance the books so to speak, you hit crisis and DKA happens if you are unlucky.
I was lucky in that as soon as I started getting symptoms, I did all the right things (drank water by the gallon and cut carbs) and thankfully managed to dodge a DKA and hope to never experience it..... your reference to "a major 1st DKA" in the title suggests you are not expecting it to be the last, but with a bit of luck and the modern technology that we now have to manage our diabetes I would hope that we have a good chance of avoiding it more easily in the future if we look after ourselves.
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Hi Barbara,

Thank you so much for taking the time for the detailed reply.
I do not expect anymore ska’s although I see what you mean. There are autoimmune occurrences in the familiar but it’s probably rare not to have, no type 1 though. I do wonder if I have have been declining for a year or more as I’ve been doing low carbs this year and this may have delayed this event, who knows - I need to learn more.
I’m at the beginning of the story and just had the libre2 sensor fitted today.
Yesterday lunch time I came off potassium, insulin, saline drips but early this morning I had to go back on as the ketones were increasing rapidly and will stay on the drips untill tomorrow and then I’ll see how it progresses.

Thanks for the quick replies and engagement, it’s nice to make contact with experienced people.


Kind regards, Steve
 
@rebrascora They’ve identified some Type 1 genes if that’s what you mean by predisposition. Interestingly, the vast majority of people with these genes - ie the predisposition to develop Type 1, if that was what you were saying - do not get it. That fascinates me. My thinking is that there’s not one trigger. It’s a sequence of unfortunate events, some of which might be pretty minor.

Recent thinking is that it starts in the gut. Gut damage from foods or viruses, etc, that then opens a door that a foreign virus/protein/whatever sneaks in. This lights the fuse wire, the auto immune attack starts.
 
@Inka, Yes, that was what I was saying, but perhaps it is a genetic predisposition to autoimmune rather than specifically Type 1, which may be why some people who have that genetic sequence don't develop Type 1 but perhaps develop other autoimmune issues..... so my sister and I perhaps both have the genetic predisposition for AI but it targeted my beta cells and her soft tissue. We know that with one AI condition we are more likely to get another too, but again, it seems to be a bit of a lottery as to whether that happens and which ones. My gut feeling is that my sugar addiction triggered my Type 1 perhaps because it caused my beta cells to be under stress and therefore more likely to be targeted my an errant immune system. I think of this pssible cause very much in layman's terms and intuition plays a big part rather than from a scientific research perspective. It doesn't bother me too much as I cannot change the past, but I use that thought as motivation to manage things well now and in the future.
This is purely my own take on my own situation and doesn't reflect on anyone else's situation or circumstances.
 
I think it could be both @rebrascora That is, a general propensity to be more likely to get auto-immune conditions and a specific Type 1 gene/marker, if that makes sense. You mention change of hormones at menopause, and I think I read somewhere that the immune system can become ‘less tolerant’ during menopause.

@mitchsi The basic point is that it’s not your fault and not due to anything you did or didn’t do. I don’t know if that makes you feel any better, but it brought me a little relief when I was diagnosed.
 
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mitchsi said:
Hi,
Having returned from holiday I walked into A&E with blood levels in the DKA coma region. Complete shock to find myself T1D at 46 years of age.

Having had the diabetes team consult with info/technology/training I have full respect to those managing T1D, what planning and care is needed!

An initial concern I have is how long should I take out of work to recover from this major dka, 3 days and my levels are not yet stabilised and also to prepare myself to self regulate (&succeed) and to prepare for this new lifestyle. Appreciate advice from adults who have gone through a similar experience as mine.
I have a tonne of other questions but then I also have a tonne of reading to do.

Thanks,
Click to expand...
I also ended up in hospital for 5 days and was put on insulin, i was originally signed off for 2 weeks but am having more time off due to still not feeling great, am not sleeping, still don't have much energy and am still very underweight, i work in a supermarket so am always on the go, was nearly at the point of collapse when i went to the doctors before he sent me to a&e but me being me still managed to put the double chilled delivery out before i went to the doctors. I am looking after myself for once, so will go back when i feel up to it, better to wait than rush back too soon and have to go off sick again. Take care of yourself and return to work when u feel ready x
 
Inka said:
I think it could be both @rebrascora That is, a general propensity to be more likely to get auto-immune conditions and a specific Type 1 gene/marker, if that makes sense. You mention change of hormones at menopause, and I think I read somewhere that the immune system can become ‘less tolerant’ during menopause.

@mitchsi The basic point is that it’s not your fault and not due to anything you did or didn’t do. I don’t know if that makes you feel any better, but it brought me a little relief when I was diagnosed.
Click to expand...
Thanks Inca, I did ask a few doctors and they reassured me but after a few days I doubt myself again. Just got to remember it is an autoimmune condition together with some other influence and is probably bad luck.

Thanks,
 
kellie01 said:
I also ended up in hospital for 5 days and was put on insulin, i was originally signed off for 2 weeks but am having more time off due to still not feeling great, am not sleeping, still don't have much energy and am still very underweight, i work in a supermarket so am always on the go, was nearly at the point of collapse when i went to the doctors before he sent me to a&e but me being me still managed to put the double chilled delivery out before i went to the doctors. I am looking after myself for once, so will go back when i feel up to it, better to wait than rush back too soon and have to go off sick again. Take care of yourself and return to work when u feel ready x
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Hi Kellie,

Sorry to hear of your current status and I hope it improves fast. I will certainly have this week off as I’m still recovering and levels need to stabilize as well finalise my insulin dose. The week after I’ll play by ear but perhaps that’s will be a reduced working day and increment into a full day/week.

Take care and thanks for the reply,
 
Final close on this thread, I’m out of hospital after 3 days and tested positive for covid in hospital! So it’s making my levels harder to stabilise but I’m home!
I’ll take 1 week completely off and see how I feel by the end of the week to see if I ease into the 2nd week or take that one off.
 
mitchsi said:
I will certainly have this week off as I’m still recovering and levels need to stabilize as well finalise my insulin dose.
Click to expand...

Hope the week goes well at home @mitchsi - I still remember the feeling of the loss of ‘safety net’ when I left hospital and qualified people weren‘t stopping by to check in on me several times a day.

It can feel a bit daunting to go solo initially - a little like your first drive alone after passing your test when you realise it is now all down to you. This feeling passed quickly, and pretty soon you’ll get to know your own diabetes, its foibles and inconsistencies, better than anyone.

One thing I’d say, from a few years of experience, is don’t expect your ‘right’ doses to stand still for all that long. It’s certainly worth putting in the time to get them tweaked to work as well for you as possible, but diabetes doesn’t sit still for long, and before long you’ll notice things are drifting again and you’ll have to tweak the doses that used to work perfectly.

It’s part of the game we have to play I’m afraid.
 
everydayupsanddowns said:
Hope the week goes well at home @mitchsi - I still remember the feeling of the loss of ‘safety net’ when I left hospital and qualified people weren‘t stopping by to check in on me several times a day.

It can feel a bit daunting to go solo initially - a little like your first drive alone after passing your test when you realise it is now all down to you. This feeling passed quickly, and pretty soon you’ll get to know your own diabetes, its foibles and inconsistencies, better than anyone.

One thing I’d say, from a few years of experience, is don’t expect your ‘right’ doses to stand still for all that long. It’s certainly worth putting in the time to get them tweaked to work as well for you as possible, but diabetes doesn’t sit still for long, and before long you’ll notice things are drifting again and you’ll have to tweak the doses that used to work perfectly.

It’s part of the game we have to play I’m afraid.
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Hi Mike,

Thanks for the response, yeah it was a bit odd being sent home with injections to do myself, having a needle phobia hasn’t been much fun but getting over it after a week.
Hasn’t been too bad except when levels are rising pretty high and being at home with no one to ask but it’s worked out so far and the diabetes team are reviewing my meds. Glucose is still too high overall so expect an adjustment today.
One day I had great control and yesterday looks bad, there’s a lot to get to used and to understand.

My wife bought a good book that I’m reading that I’m sure lost have, ‘think like a pancreas’, I’m looking forward to the section on how to handle exercise.

Thanks, Steve
 
Sounds like you are off to a great start @mitchsi - well done!

Yes, Think Like A Pancreas is a popular book with many here.
 
Yes I liked Think Like a Pancreas. Coming to terms with exercise (and / or simple activity) is not easy. Most aspects of diabetes management fit that scenario though.

I loved the proposal by another member (sorry can't remember who to give you the credit!) that trial and error should always be looked on as trial and learning. We don't try anything with our D wanting an error, but willing to recognise a lesson if needed. I don't do strenuous exercise any more, but often find I've reduced my bolus dose by 50% to mitigate a busy day, OR am ready to take a lot of extra snacks. My CGM is a true lifesaver for that.
 
Proud to be erratic said:
Yes I liked Think Like a Pancreas. Coming to terms with exercise (and / or simple activity) is not easy. Most aspects of diabetes management fit that scenario though.

I loved the proposal by another member (sorry can't remember who to give you the credit!) that trial and error should always be looked on as trial and learning. We don't try anything with our D wanting an error, but willing to recognise a lesson if needed. I don't do strenuous exercise any more, but often find I've reduced my bolus dose by 50% to mitigate a busy day, OR am ready to take a lot of extra snacks. My CGM is a true lifesaver for that.
Click to expand...
It may well have been @SB2015 , another ex Maths teacher. The method of solving equations known as "Trial and Improvement" is often miscalled by pupils "Trial and Error"!
 
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