Don't know what to do anymore (long read)

Status
Not open for further replies.
My bg hasn't been 13 or below since the end of march. I am doing daily testing of ketones on the request of my GPs until I am sorted with medications.

I am still producing/being able to use insulin, to whatever extent I don't know.
Some days its the thirst fest to lower bg and other days my body just does it without excessive drinking which leads me to believe I am making insulin and being able to use it at that time. 20-24 is fairly normal for me to be at (this week).

This isn't a sudden crisis point for me, this has been a long slow build to get to today.
Ketones are coming and going and have been for a few weeks. I do get negative results as well as up to +1 so I would say I'm treading water but getting a bit tired. If I presented at a&e it is highly likely they would have gone back to trace already by the time I get there.
If I have more than trace I am testing frequently to make sure they go down and not up.

I promise you, I will 100% take action if it becomes a problem, either if a +1 doesn't go away, esp if I have other symptoms of DKA and/or it goes above that.

I genuinely can't make them respond and get stuff sorted any quicker (wish I could) and I'd need to be clearly in (at least) early DKA for a&e to really do anything.

Its frustrating and worrying but I just have to wait it out to either get stuff sorted via DSN clinic or things getting worse.
 
@gll I don't mean to sound pushy but I'd be demanding a GAD test, Type 1's especially in later life don't suddenly just stop producing insulin and that is why so many are misdiagnosed as Type 2 and Type 2 meds work for a short period of time, we all hate that you are going through all of this and are really worried about you xx
 
I mentioned it yesterday @Kaylz (well type testing anyway, not specifically GAD) and she was like hmm maybe we should and said she would mention it to consultant. I know what the DSN wants (testing and insulin) but I guess it all needs approval higher up.
Who frikkin knows. I mean if she would call me back with info, that would be a start 😉
(its probably totally not her fault and I'm just a bit ranty and anxious)
 
Good grief what a way to find out! :( Bit like me, doc just said "You are diabetic aren't you?" You'd think he'd know if I didn't! (((hugs)))
 
  • Like
Reactions: gll
Don’t rely on Ketones to indicate bother. You are already in trouble with BGs so high. Your kidneys will be demanding a pay rise, your blood will be getting sluggish, all sorts of things can go wrong with a persistent high BG. So if you see a HIGH report on your meter, go to A&E. They won’t mind if you aren’t registering ketones, but they will put you on an insulin drip. And you will feel so much better, and get into the hospital diabetes service rather than the useless havering DSN, and get proper treatment as a T1.
 
It’s sad to say that the only way I have ever got anything done is by paying a consultant fee. Cheapest being £140, a few weeks back, all bloods were taken there and then, cpep, antibody, a1c and MODY testing was ordered and done within 2 weeks all then put through nhs. I understand this isn’t an option for everybody. My results are all still clear as mud though lol. I’m really hoping she calls you back today, it’s horrible waiting, and consultants can be a nightmare to pin down these days ! Xx
 
  • Care
Reactions: gll
I phoned them. Consultant only got back to her this morning.

Consultant decided to offer either GLP-1 or basal (she knew insulin was what I wanted).
She's emailing my GPs now to sort an urgent script out for humulin I and all the bits.
Don't need to go into be shown stuff, I have you guys and youtube for that 😉

Didn't push testing, will get going on feeling better first.
 
Last edited:
gll said:
I phoned them. Consultant only got back to her this morning.

Consultant decided to offer either GLP-1 or basal (she knew insulin was what I wanted).
She's emailing my GPs now to sort an urgent script out for humulin 1 and all the bits.
Don't need to go into be shown stuff, I have you guys and youtube for that 😉

Didn't push testing, will get going on feeling better first.
Click to expand...
That sounds like a good result for you from your consultation. make sure that you are sure about the dosage and whether you are to continue with your existing meds as well and if you need to be considering your diet as well. A lot to get to grips with. Also make sure you have a contact number to call if you do need help.
 
She said I've to call back if any problems but shes phoning me at the end of next week and I've to do another bunch of 4 a day bg readings.
Starting on 10u and start adjusting after I've spoken to her.

I could honestly cry at the moment (relief more than anything).

Been on to GPs and receptionist is keeping an eye out for the email and will let me know when script is done (will probs be tomorrow for pickup).
 
Well, it is a "foot in the door" start, so that is something and it should start to bring your levels down a bit. Not ideal, but better than nothing and the important thing is that you are now under the clinic's care although the word "care" may be somewhat limited by the sound of things.
Looking forward to seeing your levels reverse their recent trend. Do ask if you need any input on injecting.
 
At last @gll - a step in the right direction! 😳 You deserve a medal - and an apology - for your patience.
 
Lucyr said:
I’m not really familiar with the different types of humilin, is humilin 1 the same as humilin I, so the “intermediate insulin” here? https://www.diabetes.org.uk/resources-s3/2017-10/University%20Hospitals%20of%20Leicester%20-%20Insulin%20Profiles.pdf
Click to expand...
yeah humulin I. Can't read my own notes here 😉
Will double check on the script when I pick it up. :rofl:

rebrascora said:
Do ask if you need any input on injecting.
Click to expand...
totally will 🙂 ty

Since I've to take in the morning with breakfast, hoping to get it in my hands tomorrow and start Thursday morning (we will see how that plan goes - watch this space)
 
gll said:
yeah humulin I. Can't read my own notes here 😉
Will double check on the script when I pick it up. :rofl:


totally will 🙂 ty

Since I've to take in the morning with breakfast, hoping to get it in my hands tomorrow and start Thursday morning (we will see how that plan goes - watch this space)
Click to expand...
Do you need to continue with the other medications as well?
 
Leadinglights said:
Do you need to continue with the other medications as well?
Click to expand...
nope, empagliflozin is putting too much squeeze on my thirst on top of water tablets (plus thrush just for fun) and gliclazide is so hit and miss as to weather I see any response from it.

I've limped along on those two despite the issues to get to this point 🙂
 
gll said:
yeah humulin I. Can't read my own notes here 😉
Will double check on the script when I pick it up. :rofl:


totally will 🙂 ty

Since I've to take in the morning with breakfast, hoping to get it in my hands tomorrow and start Thursday morning (we will see how that plan goes - watch this space)
Click to expand...
In hospital my ‘training’ on how to use insulin involved being bundled into what I would describe as a broom cupboard and stabbing a needle into a squishy ball. 30 seconds later I was fully qualified to administer life saving medication to myself…. Amazing eh? Sure we can do better than that if you have any problems. Xx
 
  • Wow
Reactions: gll
LOL Emma, well I figured there's no point gong all the way into the DSNs base location (a right hassle to get to plus have to bring the hop-a-long kiddo) only to be shown what I can find on youtube (they even have nhs videos on there) or by any one of you brilliant peeps via a video call.

DSN is happy enough to let me run with it 😛
 
gll said:
yeah humulin I. Can't read my own notes here 😉
Will double check on the script when I pick it up. :rofl:


totally will 🙂 ty

Since I've to take in the morning with breakfast, hoping to get it in my hands tomorrow and start Thursday morning (we will see how that plan goes - watch this space)
Click to expand...

I use isophane basal insulin when I take a break from my pump (that’s what the ‘I’ in Humulin i stands for). I find it a good insulin as a basal. It’s twice a day, which sounds a nuisance but actually gives more flexibility. However, I also use a bolus insulin for meals.
 
  • Love
Reactions: gll
Welcome to the world of those who stick needles into themselves (just for fun?). This will soon make you feel much better.

You do not need to press for the tests to prove that you are T1. There is no way that a T2 can produce ketones when the BG is high. You just need to get this recorded and the have you records updated. There are advantages in being diagnosed as T1.

Your insulih will stay active (I think) for about 9 hours. A morning shot will cover most of the day with a low carb meal on the evening. I assume that eventually you will go to two shots a day. Ypu moght look at a more flexible base-bolus system for use when this happens.

Top tip: keep a log of what you eat, what you inject and your BG readings, with any other information that might ve useful.

Tip 2: never leave the house, even if it is only to go to the garden gate, without something to treat a hypo.
 
There is no way that a T2 can produce ketones when the BG is high.

That’s not true. Some Type 2s can produce ketones, and, although rare, Type 2s can get DKA too.
 
Status
Not open for further replies.
Back
Top