# Ten years ago...



## Northerner (Apr 14, 2022)

Facebook has just reminded me of this. The consultant I saw shortly after this told me I would probably need it again before very long. Still waiting!


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## rebrascora (Apr 14, 2022)

Northerner said:


> Facebook has just reminded me of this. The consultant I saw shortly after this told me I would probably need it again before very long. Still waiting!
> 
> View attachment 20642


Hope you continue to wait! One of those situations when it is easy to be patient I imagine since the longer you wait, the better! I wonder how you would have managed on a mixed insulin??
Congrats on 10years being basal free! Here's to the next 10!


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## Northerner (Apr 14, 2022)

rebrascora said:


> Hope you continue to wait! One of those situations when it is easy to be patient I imagine since the longer you wait, the better! I wonder how you would have managed on a mixed insulin??
> Congrats on 10years being basal free! Here's to the next 10!


I would have been having hypos every night on mixed  I found the biggest thing for me was the stress lifting having removed the possibility of a dangerous night hypo - I hadn't realised how much that had been playing on my subconscious until this happened. I still get night hypos, but they are not dangerous ones - the Libre will only let me set a lower limit of 3.9 mmol/l and I can dip to 3.3 mmol/l - which is normal for people not on insulin  Mucks up my Libre records though!


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## nonethewiser (Apr 15, 2022)

Strange case you Northie, anyway congrats on milestone my friend.


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## Northerner (Apr 15, 2022)

nonethewiser said:


> Strange case you Northie, anyway congrats on milestone my friend.


I am strange - Type Weird   I have encountered maybe half a dozen similar cases here on the forum over the years, so I'm not unique. I know of one person who is off insulin completely and just takes the occasional half-tablet of glclizide


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## sg295 (Apr 15, 2022)

Hi @Northerner 

I’ve just come across this post and just want to say thank you for sharing it!

This post, as well as others that people have been putting on the forum, has helped me realise that we are all different and that diabetes is not a one size fits all.

I had a hard time getting a type 1 diagnosis as I wasn’t ‘typical’. Just because my levels weren’t super high and I didn’t have ketones/wasn’t in DKA, I was told I was fine and there was nothing wrong with me. That’s despite the fact I had all the classic symptoms, really didn’t look or feel good in myself and also had sugar in my urine and BG levels high enough to diagnose.

Then there was more confusion when they did antibody and c peptide tests. I tested positive for one antibody (IA2) but negative for the others and was also still producing some of my own insulin. 

All of these things together meant that the team almost doubted me. They eventually came to the conclusion that I must just have a slower progressing form of type 1 but it took a while!

Until I was on insulin I looked and felt awful. Once I started, I felt much better and my symptoms practically stopped. Even now, I am on only a very small amount of basal and use a slightly smaller bolus ratio of 1:15 for meals. However, the fact I’m on such a small basal also made me wonder if I was a bit strange. But seeing this post has made me realise we are all different and that just because your needs aren’t they same as someone else’s, doesn’t mean your case is any less relevant as I was made to believe.

So thank you for this


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## Northerner (Apr 15, 2022)

sg295 said:


> Hi @Northerner
> 
> I’ve just come across this post and just want to say thank you for sharing it!
> 
> ...


You're welcome  My onset was very slow with hindsight - I had been having the classic symptoms for many months prior to my diagnosis, but I put them down to other things. I had been training for a marathon, so was often tired, drank a lot and consequently peed a lot, I also lost weight over an 18 month period - again I put this down to running. If I had gone to a doctor at this time I would possibly have had a similar experience to you.  However, a week before the marathon I fell very ill and after losing 17 pounds in 3 days I ended up calling 999. It turned out I had caught a virus and the strain of dealing with this was too much for my already struggling pancreas and it pushed it over the edge. I ended up with DKA and was in hospital for 8 days. Needless to say, I missed the marathon  I was started on 20 units basal (lantus) and 45 units bolus (novorapid). As I began to learn more about managing my diabetes my insulin requirements gradually declined over about 4 years, until I ended up where I have been since - no basal, and significantly less bolus. I suspect I would need even less bolus if I could exercise at the sort of level I could in my 30s, but I'm in my 60s now and my body says no. Still, activity levels are the biggest factor in how much insulin I need. I don't carb count, except maybe very crudely and I think my endogenous insulin, although insufficient to cover the carbs I eat, helps smooth my levels - my time in range on the Libre is usually in the mid 90% level  

There are many, many people here who initially had difficulty obtaining a correct diagnosis - usually, if you are an adult, they mark you down as Type 2 until it becomes obvious that the medication isn't working. I think, in a way, I was lucky to get DKA because it made my diagnosis more straightforward. 

I have known members here who need such tiny amounts of insulin that they can only achieve the doses via a pump, and others, as I said, who are like me  The right amount of insulin is the amount you need to keep your levels on the straight an narrow  Human beings are incredibly complex and diverse, so it shouldn't be surprising that there can be such a wide range of experiences, but I think some healthcare professionals think you must be either category 'A' or 'B' (or possibly 3c  ). You can learn a lot from others, which is why the forum is so brilliant, but you also need to understand how things are working for you


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## nonethewiser (Apr 16, 2022)

Northerner said:


> I am strange - Type Weird   I have encountered maybe half a dozen similar cases here on the forum over the years, so I'm not unique. I know of one person who is off insulin completely and just takes the occasional half-tablet of glclizide



Gonna be honest here, when you stopped basal insulin did think you would be back on it in no time, how wrong was I.

Odd how some can take so little insulin yet others are on high doses, spoke with guy who uses pods like myself & has to change his after 2 days due to high insulin usage, so 300u isn't sufficient to last for 3 days of pod activation. Obviously many factors can be at play but still interesting nonetheless.


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## New-journey (Apr 16, 2022)

Amazing!! I imagine most consultants wouldn't understand as they would have us all in the same box. I wish you another 10 years with no Lantus!


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## TheClockworkDodo (Apr 16, 2022)

sg295 said:


> Hi @Northerner
> 
> I’ve just come across this post and just want to say thank you for sharing it!
> 
> ...


I _*was*_ in DKA when I was diagnosed and I tested off the scale for antibodies ... but they never bothered to test to see whether I was still producing my own insulin then, and I'm pretty sure I'm still producing some now, over 11 years later.  I usually have between 4-6 units basal (depending on the weather) and while my bolus ratio is a classic 1:10 in the morning it can be anything from 1:16 to 1:28 for the rest of the day (depending on all sorts of things, currently about 1:22) and even when I cut my bolus doses down as far as I can reasonably go without having big spikes, I still can't stop having hypos several times a day.  I've never done an Alan and gone without basal because something has to keep down the daytime spikes without increasing the numbers of hypos still further, but I'm pretty sure I don't really need it at night, or maybe just need 1 unit at night - I eat so many biscuits at bedtime ... .

Consultants have been baffled from day 1, they have never known quite how to treat me either.  I think we are all a bit strange, in that there is no such thing as what is considered a "normal diabetic".  Perhaps there are as many types of diabetes as there are people who have it


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## Northerner (Apr 17, 2022)

TheClockworkDodo said:


> I _*was*_ in DKA when I was diagnosed and I tested off the scale for antibodies ... but they never bothered to test to see whether I was still producing my own insulin then, and I'm pretty sure I'm still producing some now, over 11 years later.  I usually have between 4-6 units basal (depending on the weather) and while my bolus ratio is a classic 1:10 in the morning it can be anything from 1:16 to 1:28 for the rest of the day (depending on all sorts of things, currently about 1:22) and even when I cut my bolus doses down as far as I can reasonably go without having big spikes, I still can't stop having hypos several times a day.  I've never done an Alan and gone without basal because something has to keep down the daytime spikes without increasing the numbers of hypos still further, but I'm pretty sure I don't really need it at night, or maybe just need 1 unit at night - I eat so many biscuits at bedtime ... .
> 
> Consultants have been baffled from day 1, they have never known quite how to treat me either.  I think we are all a bit strange, in that there is no such thing as what is considered a "normal diabetic".  Perhaps there are as many types of diabetes as there are people who have it


One consultant when I came to Harrogate 4 years ago, and therefore didn't know me, was horrified that I didn't take any basal and tried to persuade me to start on levemir, which I could choose to take as a single dose that wouldn't last into the night and possibly cause hypos. I can't remember - have you been offered this as an option? My bolus doses can vay dramatically = a couple of weeks ago I needed over 40 units and was still spiking, yesterday I used 11 units and spent the day eating supplementary jelly babies and custard creams to try and keep my levels up!


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## EmmaL76 (Apr 17, 2022)

Which antibodies did you have if you don’t mind me asking northerner? Interesting you were training for a marathon when you fell poorly as I was doing something similar. My DN was convinced that’s what tipped me over the edge as she has another gentleman on her books aged 50 who actually collapsed during his marathon thats when it was discovered he had diabetes


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## SB2015 (Apr 17, 2022)

EmmaL76 said:


> Which antibodies did you have if you don’t mind me asking northerner? Interesting you were training for a marathon when you fell poorly as I was doing something similar. My DN was convinced that’s what tipped me over the edge as she has another gentleman on her books aged 50 who actually collapsed during his marathon thats when it was discovered he had diabetes


The antibodies that are evident in T1s are the GAD antibodies.  These are the pests that respond to the signals from our beta cells and head that way to destroy them bit by bit.  This destruction happens at a different rate for each of us.  

Illness or extreme sport can place an overload on our remaining beta cells so that they are not able to deal with the glucose and send us into DKA.

I can’t remember whether they ever did this test for you Emma.  Another diagnostic test is the c-peptide.  This measures the amount of insulin our pancreas is still producing, if any.

@Northerner is unusual, and I hope that you continue to fox the medics Northerner with your ‘weird’ diabetes.


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## Northerner (Apr 17, 2022)

EmmaL76 said:


> Which antibodies did you have if you don’t mind me asking northerner? Interesting you were training for a marathon when you fell poorly as I was doing something similar. My DN was convinced that’s what tipped me over the edge as she has another gentleman on her books aged 50 who actually collapsed during his marathon thats when it was discovered he had diabetes


Hi Emma  No, I don't think it was the marathon training as at that point I had been running marathons for nearl 25 years already. My own theory suspects work stress as the initial trigger - I had been working on a very high profile project and the company was also iin the process of being taken over. This was about 18 months before my diagnosis, but around when - with hindsight - my symptoms started gradually appearing. Interestingly, three months before my diagnosis I had an infection flare up in a tooth that had been theoretically root-filled ten years earlier and had to have the tooth removed. Probably elevated blood sugar levels had resurrected the infection. I ran a half marathon in The Hague two months before diagnosis, ending up with my worst time ever  The final straw came completely out of the blue when I caught a sickness virus that tipped me over the edge. I'm not aware of any tests that were done for GAD or c-peptide at that time. I think the fact that I had been doing so much running probably kept me very sensitive to the declining amounts of insulin I was producing, but the virus was too much  

I started on 20 units of basal, but that didn't really start coming down for another two years, then it was another two years before I hit zero units, so it took a while. My diet has changed since my diagnosis - I used to be able to stuff my face with whatever I wanted, and because of the running never gained weight, now I'm much more careful. Also, it's taught me a lot about how my body works and so - on the whole - I look after it better  This forum started 5 months after my diagnosis and since then I have followed the 'case histories' and experiences of a very diverse group of people, so I probably have a much broader knowledge of the subject as a whole than many healthcare professionals - most of them have never encountered someone like me, for starters!


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## trophywench (Apr 17, 2022)

It's absolutely nothing unusual for Type 1s to still be producing some insulin when diagnosed as young children and now being 70 or 80+.   The Mayo Institute in Boston proved this some years ago with their Golden Oldies who they've followed since diagnosis.  Normally it isn't enough to make any difference though.  In any event, most of us haven't a clue whether we do or not.  Just deal with our diabetes whatever it happens to do!


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## sg295 (Apr 17, 2022)

TheClockworkDodo said:


> I _*was*_ in DKA when I was diagnosed and I tested off the scale for antibodies ... but they never bothered to test to see whether I was still producing my own insulin then, and I'm pretty sure I'm still producing some now, over 11 years later.  I usually have between 4-6 units basal (depending on the weather) and while my bolus ratio is a classic 1:10 in the morning it can be anything from 1:16 to 1:28 for the rest of the day (depending on all sorts of things, currently about 1:22) and even when I cut my bolus doses down as far as I can reasonably go without having big spikes, I still can't stop having hypos several times a day.  I've never done an Alan and gone without basal because something has to keep down the daytime spikes without increasing the numbers of hypos still further, but I'm pretty sure I don't really need it at night, or maybe just need 1 unit at night - I eat so many biscuits at bedtime ... .
> 
> Consultants have been baffled from day 1, they have never known quite how to treat me either.  I think we are all a bit strange, in that there is no such thing as what is considered a "normal diabetic".  Perhaps there are as many types of diabetes as there are people who have it


That’s interesting, thank you for your reply!

Like I say, I only had IA2 antibodies when diagnosed with GAD and others coming back as negative. It’s very interesting to see how it is so different for everyone and makes me realise that just because you’re not the same as someone else, doesn’t mean you’re ‘strange’, it’s about whatever works for you


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## rebrascora (Apr 17, 2022)

sg295 said:


> That’s interesting, thank you for your reply!
> 
> Like I say, I only had IA2 antibodies when diagnosed with GAD and others coming back as negative. It’s very interesting to see how it is so different for everyone and makes me realise that just because you’re not the same as someone else, doesn’t mean you’re ‘strange’, it’s about whatever works for you


You can look at it as.... There is a *VERY* broad range of normal with diabetes.... or....We are all strange in our own way.


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## TheClockworkDodo (Apr 17, 2022)

Northerner said:


> One consultant when I came to Harrogate 4 years ago, and therefore didn't know me, was horrified that I didn't take any basal and tried to persuade me to start on levemir, which I could choose to take as a single dose that wouldn't last into the night and possibly cause hypos. I can't remember - have you been offered this as an option? My bolus doses can vay dramatically = a couple of weeks ago I needed over 40 units and was still spiking, yesterday I used 11 units and spent the day eating supplementary jelly babies and custard creams to try and keep my levels up!


Thanks Alan, I've been meaning to ask the consultant about trying Levemir for what must be a few years now, the problem being that I haven't actually managed to see a consultant since 2017 (hospital is very short-staffed).  I would have emailed the lovely DN at my surgery to ask if she could sort it out for me, but she left just before the pandemic started, and I haven't seen anyone at all since then (my choice, it felt safer).  I have tried asking the surgery if I could talk to the new DN via Zoom - or even via email! - but they don't seem to have joined the 20th century yet, let alone the 21st


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## EmmaL76 (May 3, 2022)

I can’t remember whether they ever did this test for you Emma.  Another diagnostic test is the c-peptide.  This measures the amount of insulin our pancreas is still producing, if any.

Sorry @sg295 I've only just noticed your comment above… Yes antigad has been done twice, first result was 55 second 49.6.  C pep 3 times in total, first result was 3.6 and second 1.06 they were both urine and recent was a blood test which was 703 c pep and 59.6 insulin this was non fasting and I don’t really know what it mean lol


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