# Type 1 Diabetic - new here!



## Sam90 (Aug 3, 2016)

Hey, I'm a type 1 diabetic and have been for 19 years. I was diagnosed when I was 7 years old, and I am now 26.

One month ago I had a really bad case of diabetic ketoacidosis, my first time, which is what made me want to start to really look after my health instead of being in denial about it all the time. Before that incident, I never ever checked my blood sugars, and just played a guessing game. I'd say in the amount of years Ive had diabetes, I was probably testing my blood sugars three times a year and quite often I'd miss my long acting insulin at night and try compensate by taking it in the morning.

The diabetic ketoacidosis was something I was completely unaware of before. It happened like this...

I had woken up and immediately noticed I was extremely dizzy and nauseous. I was having a hard time thinking straight, and next thing you know I was vomiting profusely and uncontrollably. The top of my head felt like someone was hammering an ice pick into it. I felt myself losing consciousness but luckily my brother was there and called an ambulance. They sent the quickest response team and once they got there they put me in a stretcher and hooked me up to an IV. I was drifting in and out of consciousness at this point. It was when I was in the ER that I just couldn't comprehend what was happening and have no recollection of what my family told me. Apparently I was in the ER for 7 hours, being pumped full of antibiotics, antivirals, as they assumed it could be an infection like meningitis because for the whole 7 hours, I couldn't recognise anybody or make any sense out of what I was saying.

Apparently they kept bringing my twin brother in front of me every 15 minutes and asking me to open my eyes and tell them who he was and I just had no idea I couldn't recognise him. Apparently I was talking gibberish. I remember the nurses asking me questions and I could understand what they were saying but it was like my brain was having the hardest time trying to find the answers and I couldn't answer them. They started to tell my family I may have permanent brain damage and gave me an MRI scan. Luckily, they saw no complications.

After the 7 hours I began to regain full consciousness. I was hooked up to two IVs and the whole ordeal was an uncomfortable experience. Having to use the toilet every hour, the pain of the IV in my right hand was almost unbearable. Having to go use the toilet every hour, they would have to disconnect my IVs, and when I would come back to my bed they would have to inject a solution to clean the tubes which was pretty damn painful and also gave me superficial thrombophlebitis, causing a painful hardening of my vein which was bulging out of my hand and is still in the process of healing. Eventually after 3 days I had washed out my ketones from my body and was well enough to go home.

My older brother had bought me the new FreeStyle Libre scanner glucose monitor which has honestly changed my life. Its a small scanner who attach to your skin, a small flexible needle is inserted into the fat layer underneath the sensor (pretty much painless) and you just scan a device over it to get an instant reading. However, these are glucose readings from the fat layer so there is apparently a 15 minute delay in readings which can be a bit troublesome if you are in a situation where you need direct monitoring, otherwise for general checking its great.

I have began to change my diet thanks to my sister who is a naturopath and have seen a major improvement, except for this week I was slipping back into my old habits of eating takeaways and two days ago began to experience the same ketoacidosis symptoms, after getting lazy again and missing my injections. I had high ketone levels in my urine, so went to the ER before anything more serious could develop. They assured me it was probably from gastroenteritis, a virus from a dodgy takeaway, since this can also lead to high ketones...

I was sent home, but visiting an endocrinologist today to get a specialists opinion.

These incidents are the reason I want to join this forum and be part of a support community of diabetics. I can't believe I was dumb enough to slip back to old habits after experiencing what I experienced, but I'm determined to stay on the right track now.

Thanks for reading!


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## Northerner (Aug 3, 2016)

Hi Sam90, welcome to the forum  Very sorry to hear about your horrible experience with DKA - I was in a similar state when I was diagnosed 8 years ago. I'm surprised they didn't realise what it was immediately though, given your history of Type 1 - did they not test you for high blood sugars and ketones? 

Good to hear that it has prompted you to get on track with things, and hopefully this will be an experience you never repeat  What insulin regime are you on? We have quite a few members here who use the Libre and find it very helpful  Please feel free to join in and/or ask questions


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## grovesy (Aug 3, 2016)

Welcome!


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## Stitch147 (Aug 3, 2016)

Hi and welcome to the forum.


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## Sam90 (Aug 3, 2016)

Hi thanks for the welcome!

Northerner, they did not assume it was DKA at first, it was mentioned to the paramedics that I was diabetic and they tested my blood sugars when they came to pick me up at my home, but it was low at 3.9. It went up quite high at the hospital though. My brother had assumed the nurses were told I was diabetic but it was only when he mentioned it 15 minutes after admitting me in that they realized I was. They tested my blood for ketones and it was at 4.2. They wanted to rule out infection as they thought the ketones may have developed from something like meningitis. Funnily enough, my brother was using an online service which connects you to a doctor to allow you to talk to them about your symptoms while we were waiting for the paramedics and the doctor he was connected to immediately said it was DKA although none of us had ever heard of DKA or the word ketones before and trusted the nurses at the hospital to know more than an online chat with a doctor. I can't complain though, once I was diagnosed the nurses were amazing, and did such a good job of keeping me well. They really deserve a medal. 

Before the incident I was on Humalog KwikPen, three times a day before each meal, between 6-12 units depending on how I felt my blood sugars were (really silly idea - thought I was able to feel what my blood sugars were depending on how my body physically felt.) and a night time injection of Lantus at 30 units. After my DKA I went to see an endocrinologist and he kept me on the Humalog KwikPen but changed my Lantus to Levemir, and instead of injecting 30 units at night it has now been split up with 15 units of Levemir when I wake up, and 15 units at night.


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## Northerner (Aug 3, 2016)

Have you ever been on a diabetes education course to learn how to carb count, like DAFNE (Dose Adjustment For Normal Eating)? If not, do ask to be put on one, there may be something similar, but with a different name where you live. Many people find what they learn life changing (for the better! ) even if they have been diagnosed many years, as you have


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## Iyline (Aug 3, 2016)

Welcome to the forum. You've had a hellova (can I say that - admin?) time of it.  I'm sure the experienced members will give you great support.


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## Bloden (Aug 4, 2016)

Hi Sam90 and welcome. Wow, you really have been thru the wringer! Thanks for the detailed post on DKA - I've never had it so I had no idea what it was like...very scary stuff. Hopefully your terrible experience will help you focus on looking after yourself and your diabetes - it sounds like you've got lots of family support, which is great!  Good luck starting over...I use the Libre and it's really helped me grow in confidence and lower my BGs.


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## Mini-Vicki (Aug 4, 2016)

Hi Sam, welcome to the forum.
I was also in denial about diabetes for several years, I was referred to a diabetic psychologist at the beginning of this year, who I've been seeing regularly for a few months.
This has helped me immensely, and my diabetes control has come on heaps!
It might be worth talking to your consultant to see if this service is available to you 

Love Sonic by the way 
Vic x


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## Sam90 (Aug 4, 2016)

Hey lyline, Bloden and Mini-Vicki.

So I saw the endocrinologist and he thinks its nothing to worry about, even though I'm still feeling quite dizzy and nauseous. I explained to him the issue of the pain on the top of my head when I was throwing up from DKA and explained that I get really bad migraines frequently with the pain being in the exact same spot. When I shake my head sometimes it hurts. He told me it might be a blood clot in my head and could be related so I now have an MRI scan tomorrow.

I just feel really down. I don't know how I'm going to do this MRI with my current nausea, I heard MRIs cause nausea so don't want it to get worse... My ketone levels keep fluctuating. Today I woke up with 0.9, went down to 0.2 about two hours later, then went to 0.3 about 3 hours later. Im just confused about the whole situation, I feel extremely depressed, and its disrupted my process of needing to find a job which is stressing me out. 

I've decided to do blood glucose monitoring instead of using the Freestyle Libre for now since I find it gives more direct readings which I need for this current ketone situation.

This morning when I woke up I noticed I felt fine but literally maybe a minute later I was hit with this massive wave of anxiety, and had an anxiety attack which I've never woken up to. I then began to feel intense nausea and dizziness. I tried to calm myself down by playing relaxing music, I checked my glucose and noticed that it had jumped from 8.5 on the Freestyle to 13.8 one hour later without any food. 

I took my insulin and waited for my bg to go down, ate some porridge oats, and took more insulin. I started to feel better. I do still feel slightly dizzy and sick. When I take my dog out for a walk now I've noticed that when I stop its like everything I'm looking at is moving away from me and stretching out which makes me feel very sick and this has only been happening the past three days.

Sorry to sound negative, but I'm sort of losing hope with my situation after seeing these doctors. I'm seeing another endocrinologist on Saturday to hopefully get a better opinion.

Hope you're all well.


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## Northerner (Aug 4, 2016)

Sam90 said:


> ... My ketone levels keep fluctuating. Today I woke up with 0.9, went down to 0.2 about two hours later, then went to 0.3 about 3 hours later. Im just confused about the whole situation, I feel extremely depressed, and its disrupted my process of needing to find a job which is stressing me out.


Those ketone levels are nothing to worry about, they are perfectly normal, especially on waking when you haven't eaten anything through the night. Ketones are produced when your body uses an alternative form of fuel to the carbs supplied in food, usually body fat, and are produced at low levels by practically everyone. It's only when they build up to high levels that they can become dangerous, and this is usually when there is insufficient insulin circulating (as insulin is required as part of the process of removing ketones from the body). Have a read of this document, it gives a good rundown of ketones and blood sugar levels, and the actions required (written for children, but applicable to all)


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## Nicola16 (Aug 4, 2016)

Hi Sam, sorry to hear you've been having such a rough time - I can't help much on the type - front but I have had an MRI before (one on my head) and although it's strange its not painful and it didn't make me nauseous or dizzy. I hope that can offer some reassurance. All the very best.


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## heatherjoy (Aug 5, 2016)

Welcome


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## Dais99 (Aug 7, 2016)

What is this Libre regime thing? Is it more helpful? 




Northerner said:


> Hi Sam90, welcome to the forum  Very sorry to hear about your horrible experience with DKA - I was in a similar state when I was diagnosed 8 years ago. I'm surprised they didn't realise what it was immediately though, given your history of Type 1 - did they not test you for high blood sugars and ketones?
> 
> Good to hear that it has prompted you to get on track with things, and hopefully this will be an experience you never repeat  What insulin regime are you on? We have quite a few members here who use the Libre and find it very helpful  Please feel free to join in and/or ask questions


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## Northerner (Aug 8, 2016)

Dais99 said:


> What is this Libre regime thing? Is it more helpful?


The Libre is a form of CGM (Continuous Glucose Monitor), which can provide much more information than individual fingerprick tests:

http://www.freestylelibre.co.uk/


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## Carol F (Aug 14, 2016)

Goodness me it sounds like you and your family have all had quite a fright... I do hope you continue on the road to recovery.  
Great forum..i've learn't loads and i'm only six weeks in with my wee boy.


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## HOBIE (Aug 14, 2016)

Welcome to the forum Sam


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