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I don't have a 'team' and having difficulty with dosage

I

InDeathsWaitingRoom

Newbie
Messages
1
Type of diabetes
Type 1
Treatment type
Insulin
Hello,

Newbie here. I was diagnosed at 34, 15 years ago. I recently lost my business, home and 2 of my 3 dogs, and developed frozen shoulder and then fractured same **** shoulder in 3 places 2 months ago, so life is really [4 letter word]. With the time off though I have been constantly studying my levels on my apple watch using zukka, an XDrip4ios fork and I log every gram I eat using NutraCheck. And it makes no sense whatsoever...

the last 2 nights are a perfect example. Saturday night was a good night. I ate 200g of carbs throughout the day and was hovering between 4 and 7 mmol all day. My last meal was at 7, by midnight I had been at 6 mmol for hours, took my Lantus and was hovering between 3 and 5 all night. So pretty good if a bit low. Yesterday, Sunday I basically ate the same food and similar readings all day and again ate my last meal at 7. Come midnight the plateau of 7mmol started to rise gradually so I gave myself 2 units of Novo and my usual 18 units lantus. As I dozed off at one it was very slowly going down so it all looked good. I got an alarm on my watch at 4 (I only have high warning alarms at night otherwise I wouldn't sleep) telling me I was at 18 so I groggily gave myself 6 units of Novo and went back to sleep. Checking the graph when waking at 8.30 it went down to 6 before rising again to 10 when I woke so I gave myself another 4 units of Novo to lower it and counteract the oat milk coffee I would have 20 minutes later for breakfast.

I don't understand how two similar days can lead to such different results.

I have lived in a ****** little town without a hospital for the last decade and only once did my GP try and arrange for me to meet a team at a hospital 10 miles away but they kept on cancelling and then I never heard from them again so in my 15 years of type 1 I have only ever had one hospital appointment and that was the generic 'eat brown pasta' type of affair. I have been diagnosed with maculopathy (I do get eye tests at my local health centre) and with my lifelong history of chronic depression and all the stuff mentioned at the beginning I am really struggling with the idea of keeping on going. It seems blindness is the only thing I have to 'look forward to'.

I've never used AI before (except for a really garbage compressor I bought for music production) but is there a reliable AI that can look at the graphs of food input and insulin dosage and help me work out a good dose and when to take it? Otherwise I see no way out...
 
Hello @InDeathsWaitingRoom , it is interesting that people talk about calculating carbs and from there setting a dose for insulin to be taken 15 min before the meal. So far I have found no link with insulin dosing and the amount of carbs in a meal. It seems to me that different food has a different carb to mol/l ratio depending on the person, and the time of the day.
So, I tried several times to get the info from AI and every time the thing said 'see your doctor as soon as possible'.
So, what I used was a PDF from the NHS, if you type in ' Torbay and South Devon NHS insulin dosing ' in google search, it returns a 5 page information sheet on How to adjust insulin doses.
But of course you should see your doctor as soon as possible, as only your doctor may advise you.
I am sure that other NHS places do these information packs, but I found that this one is quite clear, Torbay NHS appear to have a good diabetes managment system.
Royjk
 
Good afternoon @InDeathsWaitingRoom
It sounds like you are in a tough place.
Whilst i obtain good results no 2 days are the same and what i tend to do if my levels are fluctuating upwards is to refrain from eating until i get a grip.
I find general activity like simple walking has a big influence on my absorption of insulin and have worked out how this happens by studying my libre to the nth degree.

I have had surgery on my frozen shoulder recently so i feel your pain quite literally!

You evidently know what you are doing by obtaining good levels somedays but the other days are difficult to pin point but you are correcting successfully too.

Focus on the good and see if a bit of extra activity makes any difference?
Also focus on your CGM as its a fantastic tool.

Badger your gp as you need guidance and empathy for your diabetes as well as your mental health.

I wish you all the luck in the world.

Tony
 
I think you definitely need to badger your GP to get an appointment with a specialist ASAP. They can’t refuse to give you an appointment especially as you’re struggling at the moment.

In terms of AI usage I wouldn’t rely on that as it is not reliable, you could put the same prompt and receive varied results. AI can get its information from a lot of different places including user based information from forums, online chat rooms etc that may not be accurate. You’re much better off asking a professional.
 
some of the more remote area's at least where I am based in scotland (alongside another health board aware of do same) have something called nhs "near me" appointments which are video appts for those that live in more remote area's. seem to be able to get those a lot quicker than in person appts, does the area you live in perhaps have simular? perhaps gp can refer both in person alongside a video maybe can get help a little faster that way? another possible option is calling 111 and giving them an outline of the issues and how your feeling they should be able to assist. to speedup appts which hopefully won't be changed/cancelled 100% agree with all other prior advice
 
InDeathsWaitingRoom said:
Hello,

Newbie here. I was diagnosed at 34, 15 years ago. I recently lost my business, home and 2 of my 3 dogs, and developed frozen shoulder and then fractured same **** shoulder in 3 places 2 months ago, so life is really [4 letter word]. With the time off though I have been constantly studying my levels on my apple watch using zukka, an XDrip4ios fork and I log every gram I eat using NutraCheck. And it makes no sense whatsoever...

the last 2 nights are a perfect example. Saturday night was a good night. I ate 200g of carbs throughout the day and was hovering between 4 and 7 mmol all day. My last meal was at 7, by midnight I had been at 6 mmol for hours, took my Lantus and was hovering between 3 and 5 all night. So pretty good if a bit low. Yesterday, Sunday I basically ate the same food and similar readings all day and again ate my last meal at 7. Come midnight the plateau of 7mmol started to rise gradually so I gave myself 2 units of Novo and my usual 18 units lantus. As I dozed off at one it was very slowly going down so it all looked good. I got an alarm on my watch at 4 (I only have high warning alarms at night otherwise I wouldn't sleep) telling me I was at 18 so I groggily gave myself 6 units of Novo and went back to sleep. Checking the graph when waking at 8.30 it went down to 6 before rising again to 10 when I woke so I gave myself another 4 units of Novo to lower it and counteract the oat milk coffee I would have 20 minutes later for breakfast.

I don't understand how two similar days can lead to such different results.

I have lived in a ****** little town without a hospital for the last decade and only once did my GP try and arrange for me to meet a team at a hospital 10 miles away but they kept on cancelling and then I never heard from them again so in my 15 years of type 1 I have only ever had one hospital appointment and that was the generic 'eat brown pasta' type of affair. I have been diagnosed with maculopathy (I do get eye tests at my local health centre) and with my lifelong history of chronic depression and all the stuff mentioned at the beginning I am really struggling with the idea of keeping on going. It seems blindness is the only thing I have to 'look forward to'.

I've never used AI before (except for a really garbage compressor I bought for music production) but is there a reliable AI that can look at the graphs of food input and insulin dosage and help me work out a good dose and when to take it? Otherwise I see no way out...
Click to expand...

Hi @InDeathsWaitingRoom ,

Firstly, get a GP referral to a specialist Diabetes team.
In my experience no 2 days tend to be the same even with the same tasks with just the name of the weekday changed?

To me it sounds like you at least had a couple of great days with the BGs.

The maculopathy. Have you been seeing an ophthalmologist?
I was diagnosed with macula oedema (now called “Diabetic maculopathy.) over a decade ago & with the treatment the NHS has up its sleeve. Trust me. I’m still driving.

AI. I’ve messed a little with it.Let’s just say I’m not ready to hand over my dosing to an algorithm that’s never walked my path..

Music production? What genre? I got a light home set up myself born out of lockdown when the gigs dried up & the guitarist started sending me “stems.” & asked, “can you do anything with this?”

Best wishes,

& keep talking…
 
I too find that no two days' readings are the same even though I made no change to meals, meal times, exercise and activity. I have no team either and must rely on myself. I learned most of what I know about diabetes from the experiences of others posted here. Life is full of ups and downs and I'm lucky to have positive attitude so I do what I can and don't worry...
 
Whilst waiting to try and see someone a very good read is, ‘Think Like A Pancreas,’ by Gary Scheiner. Yes he is American, but he is a diabetic who amazingly trained to be a Dr due to his diagnosis. I often refer to it.
 
Hi @InDeathsWaitingRoom
I'm sorry to read about your troubles. I would like to reinforce @Jaylee's post above regarding maculopathy in the hope that it might give you some hope. Briefly at the age of nearly 21 in 1979 I was told I would be blind within two years. I had a total of 7 laser treatments for haemorrhages in both eyes. As you can imagine I plummeted into a very dark place, so I really understand. Not only do I still drive and communicate on the forum, but as my avatar shows I also play the organ. I never thought I would be doing this 46 years later! I wish you the very best of luck.
 
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