New Type 1

[ann34+]

Hello All,

My name is Dean I'm 25 and recently been diagnosed with type 1 diabetes, also suffered a heart attack at the same time as being in hospital DKA, its a tough month haha.

I work in Security and run my own security company, have a son who is 19 months old.

Not very good at the whole "talk about yourself" thing so I'll leave it there for now.

Hopefully speak to you all regularly.

Dean.

Hi, Deanoh, just noticed these posts - just wondered whether your heart attack was caused by the DKA? If so, take care, rest up as much as possible, it may take quite a time to recover, but you will. Years ago i was in intensive care with serious DKA on diagnosis and cardiac arrest and kidney probs were mentioned - i was told by the Prof that it might take over a year to fully recover. Things have probably improved in intensive care now, but, all the same, please remember that recovery takes time, hopefully you are seeing a specialist. Best wishes

 

[Deanoh]

Hi, Deanoh, just noticed these posts - just wondered whether your heart attack was caused by the DKA? If so, take care, rest up as much as possible, it may take quite a time to recover, but you will. Years ago i was in intensive care with serious DKA on diagnosis and cardiac arrest and kidney probs were mentioned - i was told by the Prof that it might take over a year to fully recover. Things have probably improved in intensive care now, but, all the same, please remember that recovery takes time, hopefully you are seeing a specialist. Best wishes

Hey @ann34+

Yes a couple of doctors mentioned they thought the heart attack could have been triggered by either the DKA, stress from the diagnosis, or maybe a combination of the two.

Originally they though I had Myocarditis, mainly due to my age, and not feeling pain other than when I re-positioned myself in bed or took a big breathe in, but once they had done all the tests they realised it was in-fact a heart attack. It took 3 echocardiograms, MRI, CTSA and Angiogram to diagnose, as I also have clots in my heart from it all and some of the test results were conflicting between a heart attack and myocarditis - It was the Angiogram that eventually gave them what they needed.

I've got to have follow up scans including contrast echocardiogram (which is tomorrow), an MRI and another Angiogram (these are in 2-3 months time) and also waiting for an appointment for Cardiac Rehabilitation - It's all go!

 

[ann34+]

Hey @ann34+

Yes a couple of doctors mentioned they thought the heart attack could have been triggered by either the DKA, stress from the diagnosis, or maybe a combination of the two.

Originally they though I had Myocarditis, mainly due to my age, and not feeling pain other than when I re-positioned myself in bed or took a big breathe in, but once they had done all the tests they realised it was in-fact a heart attack. It took 3 echocardiograms, MRI, CTSA and Angiogram to diagnose, as I also have clots in my heart from it all and some of the test results were conflicting between a heart attack and myocarditis - It was the Angiogram that eventually gave them what they needed.

I've got to have follow up scans including contrast echocardiogram (which is tomorrow), an MRI and another Angiogram (these are in 2-3 months time) and also waiting for an appointment for Cardiac Rehabilitation - It's all go!

I am sorry to hear you have had such a hard time. The end result of untreated DKA is death, and it may take a while for your body to get back to equilibrium. When i was admitted it was touch and go. My heart seemed ok out of intensive care, but it was 3 weeks before my kidneys did - i was 3 weeks in hospital. Not nice. Glad you are having all those tests. I did not realise that nowadays people ended up in such serious DKA on diagnosis. Hopefully when things are sorted you will have time to rest - everyone's different, but you might find, as i did, that once all the adrenalin needed to cope with everything like hospital and tests subsides, you are just exhausted. Hopefully you won't be, but if you are, don't be too surprised or worried, it is part of the natural healing process. Best wishes for the upcoming tests.

 

[Deanoh]

I am sorry to hear you have had such a hard time. The end result of untreated DKA is death, and it may take a while for your body to get back to equilibrium. When i was admitted it was touch and go. My heart seemed ok out of intensive care, but it was 3 weeks before my kidneys did - i was 3 weeks in hospital. Not nice. Glad you are having all those tests. I did not realise that nowadays people ended up in such serious DKA on diagnosis. Hopefully when things are sorted you will have time to rest - everyone's different, but you might find, as i did, that once all the adrenalin needed to cope with everything like hospital and tests subsides, you are just exhausted. Hopefully you won't be, but if you are, don't be too surprised or worried, it is part of the natural healing process. Best wishes for the upcoming tests.

Thanks Ann, I hope you're well now after your issues?

It doesn't seem too bad at the moment hopefully it stays that way, and my heart doesn't get worse, but as you say maybe once everything has settpes it may hit me a little harder, just have to wait and see I suppose

I think maybe my DKA was so bad because other than a little vomiting, I had no other symptoms until about 24 hours before seeing a GP, which was clearly too late.

 

[ann34+]

Thanks Ann, I hope you're well now after your issues?

It doesn't seem too bad at the moment hopefully it stays that way, and my heart doesn't get worse, but as you say maybe once everything has settpes it may hit me a little harder, just have to wait and see I suppose

I think maybe my DKA was so bad because other than a little vomiting, I had no other symptoms until about 24 hours before seeing a GP, which was clearly too late.

Yes, ok now, thanks - it was nearly 40 years ago!!

i'm glad things not too bad at moment. If your onset was sudden then hopefully you maybe you wont have the same exhaustion problems. I was, i am told, probably a very slow onset type 1, with symptoms from exactly your age now, not picked up by the GP for some years - there were no test strips then on the GP desk. I was told that it might take as long as i had had the first symptoms to eventual diagnosis in the coma to fully feel well. Like you i had what i thought was a stomach bug and was found comatose a few hours later by a friend, and, luckily for me - though i have no memory of it at all - ambulances were much quicker to arrive then they are now.

Main problem in the first years - which you will not have - was scarcity of strips - they were not on prescription but i lived near a hospital that gave some supplies at appointments. Most type 1s i met did not have any at all, so i was lucky - they only had urine tests.

 

[Deanoh]

Yes, ok now, thanks - it was nearly 40 years ago!!

i'm glad things not too bad at moment. If your onset was sudden then hopefully you maybe you wont have the same exhaustion problems. I was, i am told, probably a very slow onset type 1, with symptoms from exactly your age now, not picked up by the GP for some years - there were no test strips then on the GP desk. I was told that it might take as long as i had had the first symptoms to eventual diagnosis in the coma to fully feel well. Like you i had what i thought was a stomach bug and was found comatose a few hours later by a friend, and, luckily for me - though i have no memory of it at all - ambulances were much quicker to arrive then they are now.

Main problem in the first years - which you will not have - was scarcity of strips - they were not on prescription but i lived near a hospital that gave some supplies at appointments. Most type 1s i met did not have any at all, so i was lucky - they only had urine tests.

Interesting, even with all of the NHS problems, reading how things used to be, we are all still very lucky these days, with what we have access to for testing, insulin and so on.. and obviously the same goes for any other conditions and illness!

 

[ann34+]

Interesting, even with all of the NHS problems, reading how things used to be, we are all still very lucky these days, with what we have access to for testing, insulin and so on.. and obviously the same goes for any other conditions and illness!

I agree to an extent, but many things are now more difficult to access now, (i have had several periods where getting test strips has become difficult) and this applies to other conditions also, at least in my experience. Also there is not, again only in my experience, the time/staff available to talk problems through - i think the GP/surgery is now meant to take on a lot of what was previously hospital's work, but they are often under pressure. Years ago when i needed help re diabetes, which was not very often, i just turned up at the hospital diabetic dept , there was a room with a number of nurses in, available to help or talk, and a number of fellow patients, who may have also dropped in, with whom i could talk to also, and make a sandwich/drink with in the communal kitchen. Of course there was no internet then, and no forums....

 

[Deanoh]

I agree to an extent, but many things are now more difficult to access now, (i have had several periods where getting test strips has become difficult) and this applies to other conditions also, at least in my experience. Also there is not, again only in my experience, the time/staff available to talk problems through - i think the GP/surgery is now meant to take on a lot of what was previously hospital's work, but they are often under pressure. Years ago when i needed help re diabetes, which was not very often, i just turned up at the hospital diabetic dept , there was a room with a number of nurses in, available to help or talk, and a number of fellow patients, who may have also dropped in, with whom i could talk to also, and make a sandwich/drink with in the communal kitchen. Of course there was no internet then, and no forums....

Oh yeah, I totally agree with the time and staff at the doctors, hospitals etc. there are clearly huge issues in that sense.

I'm yet to have difficulties getting what I need for my health, whether that be test strips or medication for my heart, why do you think there was difficulties getting the strips, when you had those issues - stock levels or GP issues?

 

[ann34+]

Oh yeah, I totally agree with the time and staff at the doctors, hospitals etc. there are clearly huge issues in that sense.

I'm yet to have difficulties getting what I need for my health, whether that be test strips or medication for my heart, why do you think there was difficulties getting the strips, when you had those issues - stock levels or GP issues?

I imagine you are unlikely to have problems yet. it is when you are a long term type one, hopefully with no problems re diabetes, keeping careful control - GPs may ask why you need the number of strips, you are doing well, no sign of diabetes probs, whats the problem? etc, makes no sense as everything is a fine balance, and needs a lot of effort every day, but that sort of thing was said in the past. Hopefully not now. Though if you look back on the forum, there have been times quite recently these issues have come up - i remember 2006 was a bad year, Diab uk helped things nationally then, i had to move GPs, it is destabilising when this happens. 2013 was another year i had troubles, and needed a consultant letter to sort, i recall there was a dept of health letter to GPs then reminding them of how serious Type one was.
Insulin was very cheap, i could walk in to a shop and buy it for £7 a vial in an emergency, on holiday - you cant do that now anyway. It is expensive to the NHS, more expensive in the USA. Urine strips were cheap also, but many blood test strips/Libre etc are not, Diabetes is more of an industry. In the States it's worrying for type ones at the moment, i worry that this could slowly come here, see various US blogs - also see Laura Marston
http://blogs.bmj.com/bmj/2017/11/14...n-the-lives-of-patients-with-type-1-diabetes/