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

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I'm just updating this thread so I don't need to go through my general history 🙂

DSN appointment is tomorrow morning (phonecall).

Current state on my meter is:
90 day average: 16.8
30 day average - 21.8
14 day average - 23.3
7 day - 23.8

the last 7 days have been strictly pre brekkie, pre lunch and pre dinner and bed and the odd one where I felt terrible. (on request of DSN)
I did have a "hi" on good Friday which I don't think gets logged as a numerical reading and it doesn't show up on my graph. Meter goes up to 33.something and I washed hands again and re-tested to confirm.
I tend to have a rule of no test within 2 hours of food.
Also need to consider that at these levels, inaccuracy either way will be in play.

Screenshot_20220424-055040.png

That's my 90 day graph.

Ketones are bouncing between negative and +1. I am drinking like a champ which seems to keep stuff at bay for now. I see trends of a build up over a few days and then get really high bg, have the omg if I don't get a drink I'm going to die feeling and consume enough liquids and get a hefty drop / reset but never quite as low as I was before the build up if you get me.
Overall fluid intake is pretty excessive.
Last night I drank about 4 750ml bottles of diluting juice and 2 cans of sugar free cream soda (I was too sleepy to make good life choice regarding the cans of juice) and went from in the region of 28 down to just under 21 overnight.

Latest a1c was 77 (12-12.1) and was 1 month ago.
I am a little more reassured that they asked for a comprehensive log of my own readings which the GP team tend to discard as a basis for much change.

I'm putting together notes and questions, would love some input on stuff to ask and maybe some keywords to use if you can think of any.

I'm not going into the appointment with the goal of pushing type testing, just getting treatment plans sorted and then push in the type testing direction when things are stable.

Thanks in advance x
 
Hello 🙂
It sounds to me as if you have been misdiagnosed. Insist on insulin you obviously need it and ask for tests to see if you are in fact a slow or late onset type 1 diabetic.
 
I'd go with, be honest at the start of the appointment about how bad you're feeling and what you want to happen, so that the DSN knows where you're at and what you're wanting to happen, and you can spend the appointment working on a plan. Definitiely mention the meter reading hi, the ketones, and getting up in the night so much as those will be the red flags .Also ask what to do if things get worse after the appointment - make sure you know who to contact, as given it's virtual you won't be starting anything there and then, and even when you do they normally start on a low dose.
 
Hi, wishing you luck with your phone call tomorrow - is this from a hospital based DSN or the nurse from your GPs?. Like @Pumper_Sue I think it's obvious that you have been misdiagnosed and are LADA (or slow onset T1) and I can't understand why they cannot see it!

I have both Apidra and Levemir here as back ups in case of pump failure, but I would happily send you a box of each to try if you could get hold of some refillable pens (I don't have any spares). Admin, please delete if this is against the rules. At least then you could see the effects.
 
It is a community DSN clinic and not GP based.
They operate out of a health centre that has a lot of clinics going on.

Patti, I appreciate the offer (more than you know) but its a case of getting them to prescribe it. First choice at this point would be insulin. Something without side effects (hypos a given of course) and something that is measurable and will work instead of relying on squeezing my pancreas and kidneys with variable results.

Also just got "hi" on my meter again and feel blummin horrible.

Proper testing is honestly a later thing to push for, I just feel crap and want to not feel crap. The rest can be sorted another day. If they come up with the idea then sure.

I've been dealing with non specialists so far and have no idea of their extent of training on diabetes and could spot potential red flags. I keep going back to saying they consider the a1c to be the hold grail of what's going on. I mean it was enough for a referral but feels like so out of touch with what's happening now.
 
gll said:
It is a community DSN clinic and not GP based.
They operate out of a health centre that has a lot of clinics going on.

Patti, I appreciate the offer (more than you know) but its a case of getting them to prescribe it. First choice at this point would be insulin. Something without side effects (hypos a given of course) and something that is measurable and will work instead of relying on squeezing my pancreas and kidneys with variable results.

Also just got "hi" on my meter again and feel blummin horrible.

Proper testing is honestly a later thing to push for, I just feel crap and want to not feel crap. The rest can be sorted another day. If they come up with the idea then sure.

I've been dealing with non specialists so far and have no idea of their extent of training on diabetes and could spot potential red flags. I keep going back to saying they consider the a1c to be the hold grail of what's going on. I mean it was enough for a referral but feels like so out of touch with what's happening now.
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Hi again, I just meant so you could prove to them that insulin works... but it was a daft idea really, expressing my frustration on your behalf. It certainly sounds like your GP and his nurse know little about diabetes. Amazingly some GPs do know very little about T1, mine told me that I know more about it than she does - bless her! Plus some surgery nurses have only done very basic education on diabetes. Lots of GPs think only children get T1.

Good luck, can't wait to hear about your appointment tomorrow.
 
Pattidevans said:
I have both Apidra and Levemir here as back ups in case of pump failure, but I would happily send you a box of each to try if you could get hold of some refillable pens (I don't have any spares). Admin, please delete if this is against the rules. At least then you could see the effects.
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As they are prescription only, legally you can not do this. :(
If I were gll I would be off to A&E now to get it sorted taken all meds taken/taking list and test results and ask point blank if type1 as have ketones as well.
 
For my money you are iype 1. T1s do not make enough insulin and no meds will make them do so. The only treatment is insulin. The treatment ogten appears to work at first if you reduce the carbs that you eat, as the limited amount of insulin that is still being made is enough to deal with this reduced amount. Insulin production falls over time.

You are right about the need to match the insulin with the carbs. We usually look at it the other way round - the insulin mops up the carbs and we adjust the insulin to match the carbs that we want to eat.

You should get a c-peptide test which will tell how much insulin you are making (it is not affected by any injected insulin). A GAD test too will confirm type 1. The GP may not be able to interpret the results, it takes an expert when you are making some insulin.

I think that it would be better to use insulin to bring down your BG, dispite the disadvantages, as if you prove to be T1 other meds just will not work.
 
thanks for all the input 🙂

Of course will update tomorrow with what was said.

I just don't know how it will go. I've gone to speak to people before (gp surgery peoples) about what's going on and came away disappointed and often felt I was overreacting.
It's the usual "well type 2 isn't very urgent to deal with" etc.

I'm trying not to build hopes up of a good outcome instead of having to jump through more hoops.
My T2 meds aren't max doses on due to side effects but they did work short term and I'm so worried they will just switch them up and I will have to endure other ways to feel lousy with shiny new side effects/torture methods.
 
gll said:
thanks for all the input 🙂

Of course will update tomorrow with what was said.

I just don't know how it will go. I've gone to speak to people before (gp surgery peoples) about what's going on and came away disappointed and often felt I was overreacting.
It's the usual "well type 2 isn't very urgent to deal with" etc.

I'm trying not to build hopes up of a good outcome instead of having to jump through more hoops.
My T2 meds aren't max doses on due to side effects but they did work short term and I'm so worried they will just switch them up and I will have to endure other ways to feel lousy with shiny new side effects/torture methods.
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But they are at the maximum dose you can tolerate without side effects which affect your well being and life.
 
Well, @gll, your figures demonstrate one thing. There is no way for a T2 to get down from a HIGH reading on a meter. You are heading for an ambulance trip to the hospital. Your figures mirror mine when I was misdiagnosed as T2. It looks like you are gradually losing the ability to make your own insulin. You are undoubtedly a T1. Your report of eating anything minimal carb that sends your BG into double figures is horribly familiar to me. Next time your BG reads HIGH go to A&E, then you might get treated properly. With insulin. You are T1, and need urgent referral. One of these days, your reader will show HIGH and you won't be able to get your BG down, ketones will appear and you will be seriously ill.

Remember, your GP knows bugger all about late onset of T1, but many of us on this forum have had to endure that lack of knowledge. It's because T1 is actually quite rare for the average GP. with an average list of patients.
 
Fingers crossed for a lightbulb moment at your appointment today @gll

So sorry it is taking this long to get sorted. There really isn’t any excuse for leaving you struggling and feeling so poorly like this for so long, when insulin has been around for 100 years. :(
 
Type 2 problems - not very urgent, BUT YOU ARE TYPE 1.

If nothing is done soon you will need a blue flashing light and a bed in ITU.
 
waiting on another call, she's off to speak to on duty consultant 🙂
 
well no one called back so I have no idea when I will hear anything.

The DSN wants me to go on background insulin at least. Nothing else was even bought to the table to try. She went to speak to the on call consultant so I still haven't got solid confirmation that's even going to happen or when they are phoning.
I said I'd be about all day after she said she would ring me and she didn't say anything to indicate it wouldn't be today to hear back from her.

I'm a bit annoyed that I've sat on edge all day waiting to find out.

I didn't want to post without confirmation but I know some wanted an update so that's all I know so far.
 
gll said:
well no one called back so I have no idea when I will hear anything.

The DSN wants me to go on background insulin at least. Nothing else was even bought to the table to try. She went to speak to the on call consultant so I still haven't got solid confirmation that's even going to happen or when they are phoning.
I said I'd be about all day after she said she would ring me and she didn't say anything to indicate it wouldn't be today to hear back from her.

I'm a bit annoyed that I've sat on edge all day waiting to find out.

I didn't want to post without confirmation but I know some wanted an update so that's all I know so far.
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I must admit if somebody says 'I'll ring you back' I give them a couple of hours then ring them or say No I'll ring you back.
If you have the contact number then I would do that tomorrow.
 
I am so disappointed for you Lou. You are now left even more up in the air. If they prescribe insulin, it could be weeks or even months before it shows on yr GP records and obviously you need instruction on use/dosage etc. I know the diabetes staff at the clinics are really busy and struggling with their workload but that doesn't help you and YOU NEED HELP.
I really hope you get a call early tomorrow morning. Did you get the name of the DSN you spoke to so that you can perhaps ring the clinic and ask to speak to her although I know that isn't possible with all clinics. .
 
gll said:
well no one called back so I have no idea when I will hear anything.

The DSN wants me to go on background insulin at least. Nothing else was even bought to the table to try. She went to speak to the on call consultant so I still haven't got solid confirmation that's even going to happen or when they are phoning.
I said I'd be about all day after she said she would ring me and she didn't say anything to indicate it wouldn't be today to hear back from her.

I'm a bit annoyed that I've sat on edge all day waiting to find out.

I didn't want to post without confirmation but I know some wanted an update so that's all I know so far.
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Please go to A&E, to put things bluntly doing so could save your life.
You are being treated disgracefully.
 
I didn't get the impression that she wasn't concerned or wanted to drag this out.
Will keep you updated here as and when I know anything.
I will call in Wednesday if I haven't heard anything. I had to call about what number to phone on and it was an answering machine so not even sure it is manned during clinic hours. I will be home all day tomorrow so won't miss the call.

<3 I'm testing ketones once a day minimum and if there are any there then more frequently.
If I hit +2 at any point then I have to call GP or 111 right away and ask for an urgent callback and if any higher than that, 999.
I'm not saying it is ideal by any means but there is a safety net of a plan in place.
Presently a big drinking session (non alcoholic lol) seems to help keep them at bay when they show up. I'm aware that wont work forever.

Appreciate all your responses and concerns. I genuinely do love my forum family and don't know what I'd do without you all x
 
I would NOT test for ketones unless my BG was above 13 and remained that high for more than four hours. If I found ketones of 1.0 or more I would seek medical help without delay.

I would first increase my insulin to reduce the BG. It is not the high BG that causes DKA, it is the lack of insulin. High BG indicates this lack. Nothing except insulin will prevent DKA.

I do not think that you should wait until Wednesday! Contact emergency services.
 
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