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



## gll (Feb 13, 2022)

Hi all.

Some of you know the struggles I have been having lately. I just wanted to vent and possibly get some feedback on everything.
I don't know what's normal and what's not anymore.

My approach had been to eat within the 2-3 rise rule and take whatever meds necessary.

(sorry this is its a long read)

I went to GPs for fluid retention and what I thought was high blood pressure. 
I had been trying to loose weight (and had lost about 12kg and unknown weight loss beforehand) and then I was suddenly gaining weight which I assume was the excess fluid.
Symptoms making me think was high blood pressure was frequent headaches and migraines, floaters in vision, feeling like my heart was pounding. Feeling rough overall. 
It was the halt of the weight loss that made me stop ignoring stuff and just go to get seen and not the other symptoms. 
Thirst and frequent peeing was a thing but wasn't really on my radar as an issue. 
I had pre-eclampsia with daughter's pregnancy so experienced high blood pressure before. 
Headaches had been ongoing for a few years but the other stuff, I would say about 4-6 months prior maybe?
BP was 160/100 ish at nurse and she took bloods.
A gp appointment was already booked for the following week so no bp meds to be prescribed until I had seen gp and blood results were back in.

I had got a text between bloods getting done and seeing the GP saying I had a prescription for folic acid to pickup so actually kinda breathed a sigh of relief and assumed that was all that was going on. 

Got to the gp appointment and started talking about the fluid build up and bp and he scanned my blood results and he asked me how my diabetes was going. Awesome way to be told a diagnosis right. (hba1c - 91 - 14 on the meters)
He did the run of mill questions once he realised this was all news to me, told me to diet and exercise . Full of helpful info right there.
Anyway was given metformin, some creams for blisters I had on my legs from the fluid build up and cream for what he said was psoriasis on my face and low dose ramipril. He said getting my BP down should help with the excess fluid.
Was booked in to see the nurse again for another bp check for the following week and sent on my way.

I suppose my story probably compares to most on here which was panic, scared to eat anything as I didn't know anything etc etc. Started metformin and the other meds and creams, read a lot off the interwebz which left me more and more confused.

Had the bp review and had a chat with the nurse and given the standard bunch of booklets and was told to come here to do the learning zone. BP still the same so booked in again for another 2 weeks for review.

I hit the site and was reading the forums here and I figured I could follow the sound advice of testing my food tolerance and try and eat to that and fit it into weight watchers plan for weightloss which I had been doing. If I have a tiny bit of wiggle room in a diet I have more success longer term. (spoiler gliclazide is slowly undoing this work ).
I got a meter and a bp monitor and got to testing.
I would say average bg was 6-8 and seeing 11 on the meter was pure panic (oh how things have changed).

As for BP, my home readings were much much better (115 / 70 ish). Long story short here, spoiler - I have white coat syndrome where my bp is actually okay but I test higher in clinical situations, my home monitor lines up with the nurses readings so high bp taken off the table now. 
I also mentioned the food testing and asked if they wanted any of the readings and she offered me a meter and test strips on repeat.

Anyway by the start of December metformin wasn't agreeing with me and was to give it a break for a weekend and reintroduce. That failed and was switched me to 1 x 40mg gliclazide (the one that helps you to just make more insulin yourself - I call it turning on the tap).
I had another bp review the same week and during the appointment someone else was called into check my legs/fluid so had a quick review of my meds and immediately doubled my gliclazide dose as it was too low given my hba1c. Was put on water tablets.

Over the next few weeks waking readings were okay but slowly starting to go up, the same previously ok foods were starting to spike me higher and longer one day and the next they were okay again.

By just before Christmas I was concerned and called GPs again. Was asked to try slow release metformin but only 500mg. Xmas to new year my tummy wasn't fantastic but was determined to go over the first couple of weeks to see if it settled. (gliclazide still in the mix)

bg was still getting more erratic. Good days and bad days were becoming more noticeable vs just bad mealtimes. Bad days waking readings were hitting the low to high teens and good days were about 10. 
On bad days I would end up just having some cold meat for breakfast / lunch to let levels come down themselves as the gliclazide would only do so much. Would often take until 5pm to get to somewhere in single figures and I could have dinner. Still massively limiting carbs with evening meal. (eg meat veg and a couple of baby potatoes or microwave rice that doesn't do much to my bg).

Called back again in the new year to let them know metformin wasn't working out. Spoke to the pharmacist (who apparently handles most T2 patients) and he decided introducing Empagliflozin was the best option. (the one where it stops your kidneys sending glucose back but instead makes you pee it out).
Numbers almost instantly dropped and waking was usually around the 8s and wouldn't push past 10 at all after meals and would generally return to there or even down into the 7s before the next mealtime.

A couple of weeks in numbers had started to creep once again. Diet pretty much unchanged. However, eating to my tested +2-3 rise was/is a disaster as it was even more inconsistent. Sometimes it is within the rise but other times it just ends up out of control and takes hours and hours to come down again. Noticing not just the odd rubbish day but a few days in a row before seeing some good ones again.
Waking had gone back to 10-13 most days.

End of Jan hba1c went from 91 to 61. Was worried the good outweighed the bad. Really doesn't help to be heard when their test don't reflect what you and your meter are saying.

That brings us up to this week. 
I'm doing a libre trial and using diabox that has been and calibrated and spot checked. 
Have confirmed the bad days are now just stay steadily high. Over the last lot of conversations with issues I was always being told how a fingerprick doesn't tell the whole story and its probably just spikes. 
The first full day of using it I was 0% time in target which the upper limit is 9. For the last 6 days of using it diabox 
(which tends to be more accurate with the highs) is showing 20% in target. 
Libre is a little kinder with 47% but is way off when fingerpricks say I'm high but fairly on point with the normal .

So another phone call...
Gliclazide has been doubled. I can have 2 x 40mg twice a day (from 1 x 40 twice a day) and allowed to play around with the dose.
Yesterday was the first day of dosage increase.
Started the new dose (6am) with a finger prick of about 13 so just had some sliced cold meat for brekkie to give things a chance. 
Numbers were steady lowering but had to go out into town about half 9. 
Was in the 6s by 10.30am and felt pretty terrible and was still dropping (I know not hypo but much lower numbers than I'm used to). 
I had a few mins to get the bus home (40 min trip) so made a (probably poor) call to get a steak bake from gregs to try and raise them a little bit (30g ish of carbs). I really didn't have options to get much else with location and time and didn't think JBs were needed but some normal carbs would be better. 
Since it is a new dose I wasn't sure how much more effective it would be and didn't want to still be dropping while traveling.
Saw a rise up to about 8-9 over the next 90 mins, levelled off and saw the start of a fall showing (and felt much better). Was planning on no carbs for lunch and see where things settled.
Then my alarms started going off with a further fast rise up to the high teens. The highest point was about 4pm (6 hours after eating) and caught a 17 on finger prick and 19 on diabox at different points. Once I saw it was finally on the way down, I fell asleep and sensor indicated I evened out around 9pm in the 6s and a flat ish line until 11.30pm when I woke up and did a 6.9 fingerprick to confirm.

Was too late for 2nd gliclazide dose so flying solo. Had instant noodles for dinner (one of the "normally can eat that barely moves my numbers" things) and have just had another trip into the teens and has been steadily stayed around 11-14 for the last 3 hours. Meds probably not being effective at all at this point so I should totally account for that. Have taken morning meds now and they are coming down again.

So usually I'm pretty consistent with medications and timing of them. I kinda messed up with sleeping when I did yesterday but was just exhausted.

Overall, mentally I'm exhausted. 
I try and be very careful with diet but its like playing roulette with my bg with the same foods. 
Are such big inconsistencies normal?
Was the steak bake yesterday a completely dumb move (although tasty) and that is the entire reason I spiked so long and high (+12 with a peak at 6 hours)?

I'm tired of feeling like I am harming myself by (for example) having a weetabix for breakfast. I know there are other things I could have. Some days it is totally fine, others bg is just trashed. Whatever way my tummy likes that bit of fibre   But still, I am feeling bad for eating the blandest breakfast cereal to make sure my guts stay happy.
I never used to have food anxiety but it is really is starting to be a thing.

I came into all of this with positivity and determination to manage what I could and take medications to keep things under control. I feel like I get some control and then its like a switch gets flipped and things go downhill again and I inwardly groan at the thought of fighting to be heard at the GPs.
I come off the phone from their appointments being made to feel like I am overreacting. The other day I was told 11-14 all day "wasn't that bad". Clearly she's never been there at dinner time with a banging headache knowing it will be a disaster if you eat the wrong thing or even eat the right things and it all goes to hell anyway. I know it can be higher/worse but its so insulting and belittling. I rarely go to the gp for help and when I do I fell like I'm wasting their time afterwards.

The peeved off part of me wants to sod it, eat "normal person" stuff and let my hba1c go wild so they will actually take things more seriously and the sensible part of me says don't be so silly - you will feel like crap and potentially cause more problems.

What happens with patients who get put on metformin and just get on with normal life and largely ignore even eatwell advice? 
Do things spiral as fast or do they just not know? Am I expecting too much from medication and limiting carbs to be effective?

What I perceive to be happening. My pancreas is a toddler. Some days with some gentle encouragement (aka meds), it behaves for the most part and everyone is happy. Other days it is a day filled with tantrums and flailing about screaming loudly where no amount of coaxing will get it to behave itself and then suddenly the tears dry up and it is all smiles again.

Advice, thoughts, feedback welcome 

(also thanks to @rebrascora for listening and encouraging me to write this post xx)


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## Lucyr (Feb 13, 2022)

I just firstly wanted to say I read it all, and can completely understand. This reminds me how my diabetes started out, they’d add more tablets and increase doses but every time it would either work for a short time then bgs would go up again, or not work at all. I felt like my body was just going “oooh shiny new drug what’s that I’ll try doing that” then a couple of weeks later stopping being bothered to do it. I figured it might be a case of my pancreas only having so much it could do. 

I’d probably be tempted to ask to try one of the newer injectable drugs that support weight loss as well as BGs, just as something else to try that could support both your bg and weight loss efforts. But even they didn’t work for me for long which in the end is why I just switched to MDI insulin, to get some sense of control. That wasn’t easy option by any means, as my pancreas chips in when it feels like it, but at least meant I could do something about the highs.


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## Inka (Feb 13, 2022)

Could missing some meals/eating hardly anything be encouraging your body to pump out glucose? Mine does if I wake up high and don’t eat. That’s my first thought.

You don’t mention your weight, but personally I’d be thinking about insulin or similar. I wouldn’t want to be in the teens so much.


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## Lucyr (Feb 13, 2022)

The part about your pancreas being a toddler - I still get this now and it’s a perfect description. Yes I have insulin, but I will go through huge changes in doses where I need to suddenly double or halve my insulin, and they’ll last either for a few days or for a few months. It’s worse if I’ve gone through a period of not being really on top of medications and testing, where presumably my pancreas has had to work harder to make up for it.

I think my theory is that the pancreas is working as hard as it can, sometimes it can’t work any harder and starts to tire, other times it gets a bit of a break (either through new different meds, or diet, exercise, less stress, whatever), and then turns up for work with renewed energy sometime later.


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## Lucyr (Feb 13, 2022)

Inka said:


> Could missing some meals/eating hardly anything be encouraging your body to pump out glucose? Mine does if I wake up high and don’t eat. That’s my first thought.
> 
> You don’t mention your weight, but personally I’d be thinking about insulin or similar. I wouldn’t want to be in the teens so much.


I didn’t add this but I’d also suggest insulin, but only after trying ozempic/equivalent. Just because if that does work for you then it is easier than insulin.


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## gll (Feb 13, 2022)

I would happily try ozempic or other in the same class (although after metformin side effects I am wary of the tummy ones) and or insulin but I'm not being heard by HCP.
At this point I would say just something to correct high numbers would be welcomed.
4 months ago if you mentioned insulin or other injectables I would be like hell no. Now, it is yes please if it works.

The nurse is phoning me back on Tuesday to see how the glyclazide dose is working out. Maybe something did ring some bells with her, who knows.

I feel like it is a fight to get them to listen and I go to them and they treat the hba1c like the holy grail and their flow chart of medication pathways that has to be followed.
Half a day in reasonable numbers and half in bad just reads as average of meh.
Finding any one person there who is prepared to talk to you and listen and even ask to see readings is my holy grail 

I have tried to be more consistent with eating now but totally hear you on that Inka. Will be more mindful about not skipping meals. At the very least I pick a tiny bit of carb with some protein to try and wake up some insulin production.
BMI is about 31 so much room for improvement there. Hard to tell accurately with fluid ups and downs too. 
Its frustrating, they tell you to loose weight and put you on meds that encourage gain.

The other nagging thought is is water tablets + Empagliflozin putting too much on my kidneys (function tests are okay). I can't drink much more than I am to help those two to work. Water tablets were working to a point but even that is somewhat reverting back to what it was.

I appreciate the feedback and Lucy, hearing that you found the same is reassuring x


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## Lucyr (Feb 13, 2022)

Are all these appointments with the nurse/GP at the GP surgery? If so, can you try asking for a referral to the hospital to see a specialist to talk about options like ozempic/insulin/etc? The GP might say “not needed yet, try this first”, but it’s worth asking. I tend to find hospitals much more open to a 2 way conversation and hearing /acting on my concerns than the nurse at the GP surgery


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## rebrascora (Feb 13, 2022)

So pleased that you have documented it all here Lou as that in itself can be helpful in just releasing some of your frustration and really pleased that @Lucyr can relate to your situation so closely, as just knowing someone else has been where you are, helps you to feel less alone or that you are not imagining things or missing a vital piece of the jigsaw, which might help to make sense of it.

As regards your diet, many of us find that full fat Greek with a few berries and mixed seeds works well for breakfast and maybe some chopped nuts with it too. If you need more fibre to help your digestive system, I use psyllium husk and chia seeds in a morning drink and it has done wonders for my bowel health. 

I agree with Lucy that a referral to a consultant/diabetes clinic might be the best option to push for and that for whatever reason, it sounds like your pancreas is spluttering and some days it is managing better than others. The Glic might be magnifying that problem, so that when the pancreas is overwhelmed, the Glic makes no difference because it is just not capable of responding.... like flogging a dead horse.... but other times when it is perhaps more relieved of the strain it is under, it is able to respond to the Glic and you see a drop in levels, meaning you are seeing very little consistency. 
The situation with the steak bake probably pushed it too hard and it flagged again which is why levels started to rise higher later and of course missing your evening Glic probably didn't do you any favours. 

It might be worth trying eating small low carb snacks more frequently to give it some better consistency if you can. Maybe just 10g carbs every couple of hours and see how that plays out. Diabetes management is really improved by planning (I am the worst person in the world for this in all aspects of life but I do make an extra effort with my diabetes, because it pays off in the long run. So make sure to have things with you that you can eat when you need to, when you are out and about. Something like Nature Valley protein bars are just about 10g each and a couple can easily sit in your bag without taking up too much space and provide a small top up if levels drop. They are quite tasty and satisfying. 

I am not saying that you can never have a steak bake again, but it isn't the healthiest of options as I am sure you well know and I can see your thinking in that situation with limited options and a long bus journey ahead, but if you go onto insulin you will need to learn to carry stuff all the time so start making a habit of it now. Anyway, just really suggesting a short term trial to see if you can stabilise things a bit better through a more uniform approach. It may be that your pancreas will not like this approach either, but worth a try. So something like a bowl of soup, have half which would be about 10g and then the other half later, or I make a big pan of ratatouille and just dip into it every now and then, or a big pan of curry but no rice or noodles, although I did try some konjac rice the other day which was OK and zero carb but plenty of fibre.... I've got a great recipe for cauliflower and halloumi curry that I often just add extra veggies into and just have a few spoons of some when I fancy it. Then try 3 reasonably low carb meals a day for a few days and see how that pans out. 
Diabetes really likes routine but it is something that I struggle to maintain, so the eating little and often small, low carb meals works quite well for me. It might just be a chunk of cheese and half an apple or a half a tub of olives with feta or some roasted peanuts or some cream cheese stuffed peppadew peepers.... usually things that give me a big flavour hit with minimal carbs and some fat, because the fat is satisfying and fills me up and stops me feeling hungry. I appreciate that you have some weight to lose but sometimes the fat can help, because it stops you feeling hungry. 

Anyway, keep experimenting. The LIbre is great for showing you what is going on but you need to be as consistent as you can with your approach in order to draw any conclusions from your results. There are something like 42 factors which affect BG levels and whilst food, medication and exercise are the main players there are plenty of other things, many beyond your control, which can chip in to skew results, so keeping as much as you can consistent will help to make things a bit clearer.

Wishing you luck in making a breakthrough soon both in terms of your own management/experiments and getting more support from HCPs and hopefully a referral. Hang in there and keep pushing for more help. 

Do keep us updated. Sending (((HUGS)))


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## gll (Feb 13, 2022)

okay okay okay I totally agree the steak bake was a bad idea (and it wouldn't be my usual go to - shall we just say it was an experiment and leave it in the past ) 

I do carry around glucose tabs as a part of my always in my bag stuff but didn't think about the other snacky things to just bump things up a bit. Will defo add them to the kit  

I tried psyllium husk when I tried a shake diet many moons ago... I will just say I am willing to try it again with caution  

I will see what I can come up with food wise with options and timings and splitting portions up a bit. 

Really appreciate the feedback x


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## gll (Feb 15, 2022)

So nurse phoned back
Can't refer me to DSN with hba1c as it is (need to be over 75), wanted to try me on slow release gliclazide or 3 x a day gliclazide at 40mg (having some tummy issues).
Tried to explain that slow release or not, there are days where gliclazide plain doesn't work. Splitting the dose wouldn't have helped any with dealing with the steak bake thing. Took huge effort to get thru thru to her.
She's speaking to GP to see what can be done and calling back.
I literally had to say at one point "but I'm not a protocol or a chart, I'm a person" as well as hba1c not telling the whole story etc.

So frustrated right now.

will update when I get the next phonecall.


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## gll (Feb 15, 2022)

They want me to go back to old dose of gliclazide (40 mg twice a day instead of 80mg twice a day) as I tolerated that and double up on empagliflozin (20mg) and if that's okay I will just go onto the 25mg single tablet dose. At least I can take that with food if it isn't agreeable without.
Nurse calling back in 2 weeks to see how its going.

Still frustrated but its either going to work or its not *shrugs*

watch this space? (and the morning thread but give me a few days for this afternoons booster to finish playing havoc )


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## Lucyr (Feb 15, 2022)

Sorry they weren’t hugely helpful but it’s worth a go, got to show willing and try everything! Hope it helps.


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## gll (Mar 27, 2022)

So an update.

I tried the doubled up empagliflozin and it sent my BP and fluid retention way up. Didn't do anything for bg really but if fluid levels/systems were off, I'm not surprised. Been taken off that and back to 10mg.

GPs are at the end of the line with what they can do and want to refer me to DSN team.

Referral is already in motion (I think) but had another hba1c done and has come back today at 77. Not an accurate representation of where I am at now but enough to support the need for specialist input with getting medications right at the very least (I think).

Yesterday was probably the worst day. Crept all day and before bed was 25.8/27.8 (did a double test to make sure).
No keytones (providing my stix aren't a dodgy batch). Time of the month is in play but mostly in the high teens and low 20s daily, waking is around 13-15 on a "normal" day.
My meter target upper limit is 10 and caught maybe 2 readings in that zone in the last 5-6 weeks.

Had a conversation with my aunt and she mentioned she is terrible for medication side effects too. Did a little bit of looking into why I am terrible on most meds and it is definitely a thing that some people just are. There have been some ties with genetics as to why which sorta makes more sense now.

Anyway, that's a quick summary of where things are at x


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## rebrascora (Mar 27, 2022)

Well I am pleased to hear you are getting referred to a specialist clinic, but sorry that you need to be. I hope you get an appointment sooner rather than later and get the support (and insulin... in my opinion) you need. Sending (((HUGS)))
It is so frustrating just reading this, let alone what it must be like living it!


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## Spoon (Mar 27, 2022)

Just to say this was my story over lockdown. I got a referral and got put on Humulin M3 insulin and then added Jardiance when 120 units a day were still not bringing me in range. However I have piled weight on and being already 20 stone when this started I am not prepared to be heading for 25 or even 30 stone - I’m just not - so I have knocked it on the head for now. Also Jardiance made me swell and gave me thrush … all other type 2 diabetes meds didn’t work and gave me awful side effects. I likened it to my GP as being tortured. Now I’ve stopped all meds I actually feel ‘well’ both physically and mentally. Not fighting constant hunger has been bliss! Am low carbing but it’s not helping me control my BG so likely I’ll be taking the insulin again soon. Don’t let this put you off trying it though as it really does work. You might be fine with the weight gain. The only thing to do is try.


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## gll (Mar 27, 2022)

Ideally I would go straight to insulin and give myself a break from side effects but who knows what they will do.

I have DPP-4 and GLP-1 agonist left to "try" before insulin is the only option. They wont give me pioglitazone with fluid retention being one side effect and I already have that without adding to it.
Both have tummy/digestive side effects so very much not wanting to try them as I have had enough of 5 months of ongoing side effects. Will have to see where they want to go with it all.
Also had thrush twice so far in about 2 months of empagliflozin. Minor for now in the grand scheme of other stuff I'd had to put up with but not wanting to keep going with it long term. For now the priority has been to contain the BG (LOL like that is happening).

I think what I am willing to do is:
GPL-1 I would want the daily one so we can backtrack if side effects are too much. Quicker to get out of my system.
DPP-4 not really wanting to try at all unless they say if its not tolerated we would skip GLP-1.
Insulin - background or mdi and no mixed. My routine and schedule is erratic. I would rather choose to eat or not and not worry about eating to mop up insulin. (correct me if I'm wrong in assuming that's how it works).

This really isn't a pity post, I just realise snippets in the waking thread might be hard to put together 

I'm fed up and just want a solution that doesn't make me feel like crap and works.


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## Leadinglights (Mar 27, 2022)

You story reads quite similar to somebody on another forum I am on and they turned out to be Type 1 and put on insulin which has been beneficial.
I couldn't see if you mentioned that you had had any tests for Type 1 to be ruled out.


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## gll (Mar 27, 2022)

not been tested. assumed as t2. Only every received GP practice care.
At the mo getting something that works is priority 

My meds are fairly low dose but no wiggle room there without more side effects.

First a1c covered the long period where the only way down during the day was to just not eat anything and I was scared to eat pretty much anything. 
Started eating to my meter which worked for a short while until my okay foods ended up not okay anymore.
Now I am just trying to be sensible with eating and bg is what it is. 

Short term emergency measures is to take another gliclazide and put up with the nausea to bring me back down. (nurse suggested this).
Will speak to her again this week if she is back from being off sick or at least ask to speak to someone else to find out if referral has been made yet and see if my weekend numbers warrant a more rushed referral (or not). T2 means snails pace of getting anything done it seems.


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## Leadinglights (Mar 27, 2022)

gll said:


> not been tested. assumed as t2. Only every received GP practice care.
> At the mo getting something that works is priority
> 
> My meds are fairly low dose but no wiggle room there without more side effects.
> ...


Even if you are Type 2 it sounds as if insulin would be beneficial as other things don't seem to be working.


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## everydayupsanddowns (Mar 27, 2022)

gll said:


> Insulin - background or mdi and no mixed. My routine and schedule is erratic. I would rather choose to eat or not and not worry about eating to mop up insulin. (correct me if I'm wrong in assuming that's how it works).



Glad you are getting a referral @gll - hope you get some answers. And access to a more appropriate and effective treatment, whichever type you happen to end up with.

It does sound like a flexible insulin regimen (such as MDI), would be worth trying. And yes, it sounds like the fixed routine of a mixed / bimodal insulin would be problematically rigid for you.


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## gll (Apr 24, 2022)

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.



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


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## Pumper_Sue (Apr 24, 2022)

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.


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## Lucyr (Apr 24, 2022)

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.


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## Pattidevans (Apr 24, 2022)

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.


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## gll (Apr 24, 2022)

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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## Pattidevans (Apr 24, 2022)

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.
> ...


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.


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## Pumper_Sue (Apr 24, 2022)

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.


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.


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## leonS (Apr 24, 2022)

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.


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## gll (Apr 24, 2022)

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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## Leadinglights (Apr 24, 2022)

gll said:


> thanks for all the input
> 
> Of course will update tomorrow with what was said.
> 
> ...


But they are at the maximum dose you can tolerate without side effects which affect your well being and life.


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## mikeyB (Apr 24, 2022)

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.


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## everydayupsanddowns (Apr 25, 2022)

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.


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## leonS (Apr 25, 2022)

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.


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## gll (Apr 25, 2022)

waiting on another call, she's off to speak to on duty consultant


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## gll (Apr 25, 2022)

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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## Leadinglights (Apr 25, 2022)

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 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.


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## rebrascora (Apr 25, 2022)

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.  .


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## Pumper_Sue (Apr 25, 2022)

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.
> ...


Please go to A&E, to put things bluntly doing so could save your life.
You are being treated disgracefully.


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## gll (Apr 25, 2022)

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


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## leonS (Apr 26, 2022)

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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## gll (Apr 26, 2022)

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.


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## Kaylz (Apr 26, 2022)

@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


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## gll (Apr 26, 2022)

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)


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## Ditto (Apr 26, 2022)

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)))


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## mikeyB (Apr 26, 2022)

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.


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## EmmaL76 (Apr 26, 2022)

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


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## gll (Apr 26, 2022)

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.


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## Leadinglights (Apr 26, 2022)

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.
> ...


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.


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## gll (Apr 26, 2022)

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).


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## rebrascora (Apr 26, 2022)

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.


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## Bloden (Apr 26, 2022)

At last @gll - a step in the right direction!  You deserve a medal - and an apology - for your patience.


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## Lucyr (Apr 26, 2022)

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/resourc...20of%20Leicester%20-%20Insulin%20Profiles.pdf


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## gll (Apr 26, 2022)

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


yeah humulin I. Can't read my own notes here 
Will double check on the script when I pick it up. 



rebrascora said:


> Do ask if you need any input on injecting.


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)


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## Leadinglights (Apr 26, 2022)

gll said:


> yeah humulin I. Can't read my own notes here
> Will double check on the script when I pick it up.
> 
> 
> ...


Do you need to continue with the other medications as well?


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## gll (Apr 26, 2022)

Leadinglights said:


> Do you need to continue with the other medications as well?


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


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## EmmaL76 (Apr 27, 2022)

gll said:


> yeah humulin I. Can't read my own notes here
> Will double check on the script when I pick it up.
> 
> 
> ...


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


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## gll (Apr 27, 2022)

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


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## Inka (Apr 27, 2022)

gll said:


> yeah humulin I. Can't read my own notes here
> Will double check on the script when I pick it up.
> 
> 
> ...



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.


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## leonS (Apr 27, 2022)

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.


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## Inka (Apr 27, 2022)

*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.


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## Pattidevans (Apr 27, 2022)

leonS said:


> 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.
> 
> ...


And as I said elsewhere, you need to inform the DVLA.

That aside I am glad to hear you are getting better help, oh and I am sure you will feel the benefit of even a shortish lasting basal, but eventually you will need a clear diagnosis of type as T2 on insulin are treated completely different to T1s.  Unfortunately they tend to treat T2s as second class citizens.  T1s normally get much better support, more access to the latest technology and education, plus more modern insulins.


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## Lucyr (Apr 27, 2022)

Inka said:


> *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.


About to say the same, I’m t2 and I’ve had DKA whilst taking insulin


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## gll (Apr 27, 2022)

@leonS 
I've had hypo stuff in my bag since gliclazide came onto the scene  
BG readings are required by DSN (i assume to figure out what direction to move things to) and can log carbs too. good suggestion 

@Pattidevans I don't drive so it isn't an issue. I mean I can drive, just never got around to sitting my test. Provisional lapsed a few months back so nothing to sort there but ty <3


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## leonS (Apr 27, 2022)

How?


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## Lucyr (Apr 27, 2022)

leonS said:


> How?


How what, how would a t2 have DKA? The same way a T1 would, not having enough insulin to allow glucose into your cells.


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## gll (May 20, 2022)

Update:
DSN phoned this morning.

She's delighted with progress so far for such a small dose of insulin. Understands how frustrating it can be to be less aggressive than some HCPs start people on but wants it to be nice n slow to protect my eyes from more damage.

She's more looking at my trends going down my logbook and not across (ie is waking trending down and is lunchtime trending down) and can see they are all pretty much going the right way and not to get too hung up on the rogue numbers right now.

We also touched on the MH side of diabetes controlling me and not me controlling it. I told her I literally said yesterday I long for the day when I feel more in control of it.
Talked a little about my low to moderate carbs (she was full of praise) but did warn her when I'm at target, they may go up a little again towards a more sustainable diet so expect a rise and is happy with that game plan, for now just getting to 7 will change the ball game and what we can do.

Told her I felt it high 20 and felt low at 10 this week so my comfy levels have shifted down. I can hit pause on adjusting at any time if I feel too low just to acclimatise to newer numbers.

Have an appointment letter being sent out for next month so will defo get a call back then but she was very genuine with the phone anytime comments.
I'm a lot happier/reassured even though nothing has changed treatment wise


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## Pumper_Sue (May 20, 2022)

gll said:


> We also touched on the MH side of diabetes controlling me and not me controlling it. I told her I literally said yesterday I long for the day when I feel more in control of it.


Would it help if you thought of it as managing your diabetes rather than controlling it?

Unfortunately as we are humans and not machines we have no control over certain things in life including what our blood sugars decide to do unasked 

You are doing a fantastic job so well done and it sounds as if you have a very helpful nurse which is always good


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## pinkjude (May 20, 2022)

Inka said:


> Could missing some meals/eating hardly anything be encouraging your body to pump out glucose? Mine does if I wake up high and don’t eat. That’s my first thought.
> 
> You don’t mention your weight, but personally I’d be thinking about insulin or similar. I wouldn’t want to be in the teens so much.


Yesterday I had yoghurt and fruit for breakfast and 2 hours later my level was 8.2, this is high for me. The yoghurt was no added sugar plain. If I have a more filling breakfast I get lower levels


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## pinkjude (May 20, 2022)

gll said:


> Update:
> DSN phoned this morning.
> 
> She's delighted with progress so far for such a small dose of insulin. Understands how frustrating it can be to be less aggressive than some HCPs start people on are but wants it to be nice n slow to protect my eyes from more damage.
> ...


Well done and your nurse sounds very good. Diabetes can be over whelming and as others have suggested maybe think of it as managing not controlling it. You will get ups and  downs . I worry when I get the odd rogue high reading of say 11 but know if I drink water and move about it will lower. It takes a while for your body to adjust to a different way of eating, etc and the main thing is you are heading in the right direction.It doesnt matter how long that takes as long as you get to where you need to be eventually. I was doing fine with an HBA1c of 50 then stress and life events caused it to go to 84. I then decided to start a low carb diet. I used this site plus I joined the low carb programme which is run in conjunction with the NHS. I also went on to the website for my local NHS and looked up diabetic services. There was mentiuon there of a programme called second nature so I filled in the contact form. Much to my surprise I received a call telling me I could have a free place on the programme as my GP surgery subscribe to it , I received a free recipe book, hand book, digital scales to weigh myself and a fitness tracker. You get lots of support from health coaches.  My GP didnt know anything about it!  Could be worth checking


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## gll (May 20, 2022)

@Pumper_Sue appreciate that <3
If I go back to what I said on my first post (I'm so putting that in my signature)


> My pancreas is a toddler. Some days with some gentle encouragement (aka meds), it behaves for the most part and everyone is happy. Other days it is a day filled with tantrums and flailing about screaming loudly where no amount of coaxing will get it to behave itself and then suddenly the tears dry up and it is all smiles again.


I totally accept this (which is progress)
I would just love to be able to roll my eyes at my body having a tantrum and stick a correction in instead of knowing my high now will likely carry itself through the day unless I go super minimal on carbs for the next meal (which is entirely impractical if I am out for the day and bought lunch with me) 
I mean today vs a month ago, totally different ball game now. 23-hi on the meter vs my 15-17 ish is a huge drop.
Being able to sleep without getting up to pee every hour is massive.



pinkjude said:


> Yesterday I had yoghurt and fruit for breakfast and 2 hours later my level was 8.2, this is high for me. The yoghurt was no added sugar plain. If I have a more filling breakfast I get lower levels


I often do a yogurt (activia) when I'm just up to stop the "helpful" glucose dump and follow up with a 11g carb bar like alpen light an hour or two later. Really not a eat first thing kinda gal.
I keep toying with the idea of shakes in the morning as I can down one of those first thing and usually be okay until lunchtime. When I do my next libre I will see how that works out with rises.
Is the second nature repackaged keto or just low carb?


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## Pattidevans (May 20, 2022)

At  least it's good news that the nurse is going to ring again, but as I have said elsewhere, I simply cannot understand why they are so reluctant to do the proper tests to provide a correct diagnosis.... all I can see from your posts is that various HCPs "think" you are T2.  Perhaps I am getting so het up about it on your  behalf because something similar happened to me... although I was promptly put on a proper insulin regime I was denied all sorts of other things e.g. carb counting course (although it was fairly easy to teach myself).  Once I had the tests and a proper diagnosis it was a totally different ball game regarding access to diabetic technology etc.


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## pinkjude (May 20, 2022)

gll said:


> @Pumper_Sue appreciate that <3
> If I go back to what I said on my first post (I'm so putting that in my signature)
> 
> I totally accept this (which is progress)
> ...


second nature is basically a programme for anyone with diabetes or anyone trying to lose a lot of weight or both. Its principles are instilling habits that become second nature


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## Leadinglights (May 20, 2022)

pinkjude said:


> Yesterday I had yoghurt and fruit for breakfast and 2 hours later my level was 8.2, this is high for me. The yoghurt was no added sugar plain. If I have a more filling breakfast I get lower levels


You only mention what your reading was after breakfast not before so it may well have been OK. What fruit did you have and how much?


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## grovesy (May 20, 2022)

pinkjude said:


> second nature is basically a programme for anyone with diabetes or anyone trying to lose a lot of weight or both. Its principles are instilling habits that become second nature


Not all CCG's offer the same programmes.


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## pinkjude (May 20, 2022)

grovesy said:


> Not all CCG's offer the same programmes.


No I know that but my surgery had no idea that our health authority subscribed to it. They have been so impressed by my progress they are now referring patients


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## Proud to be erratic (May 20, 2022)

gll said:


> Update:
> DSN phoned this morning.
> 
> She's delighted with progress so far for such a small dose of insulin. Understands how frustrating it can be to be less aggressive than some HCPs start people on are but wants it to be nice n slow to protect my eyes from more damage.
> ...


It's good to read this progress report; I suspect its good for you just being able to report something positive, even (as you say) nothing has changed treatment wise -yet!

Your comments about your pancreas being akin to a toddler amused me when I first read it and reminded me that I was going to reply - but then forgot who originated the comparison. I identified with that - then  remembered that they took my pancreas away; so either I'm getting phantom responses or else it's even more complicated and the mysteries of DM deepen!


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## everydayupsanddowns (May 22, 2022)

Glad there is ongoing gradual improvement @gll - and still immensely frustrated in your behalf over the huge delays.

Hope you do get access to GAD and cPep checks at some point, just to finally lay that question to rest!


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## gll (Jun 10, 2022)

Another Appointment / Update

Given all my numbers for the last week. She agreed still too high.
I've to do +4u increases of insulin now and booked in for another review in 2 weeks with the probability of teatime dose (same insulin - humulin i) being initiated then. Once again protocols were mentioned and trying to do things slowly.
She is sending me out samples of 5mm and 4mm needles after discussing issues with injecting into thighs and see if they suit better 

I have got some libre sensors to do me a couple of months and she would love the data to be shared with her (not supplied by them though) but anything in the plight to get onto the right regime 
(Massive thanks to a very kind member who had un-needed sensors that were sent to me <3 )

Totally forgot to ask about type testing. One of the few things I forgot to write down


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## rebrascora (Jun 10, 2022)

So pleased you had a mostly positive response and that you have obtained those spare sensors as I am sure they will help you. 
Not sure I understand the bit about evening Humulin I. Are you just taking it once a day at the moment? ... If so, is she suggesting you split the dose or just start adding a bit extra in the evening instead of more on a morning? Really wish they would give you a basal/bolus system but I guess we have to be thankful they have at least given you insulin at the moment. Shame you didn't ask about testing but you can ask in 2 weeks time.... Make it top of the list!
Look forward to seeing your waking levels start coming down now you can ramp up the dose a bit.


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## gll (Jun 10, 2022)

I think it will be add on for the evening and not split. She still seems to think I'm not on a huge dose at the moment.
the insulin profile is
(Intermediate-acting insulins)
https://www.diabetes.org.uk/resourc...20of%20Leicester%20-%20Insulin%20Profiles.pdf
so I assume its tailed off mostly or at least the peak has declined too much by dinnertime/overnight/first thing. bg trends indicate that anyway


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## gll (Jun 24, 2022)

So had DSN follow up appointment today,

I've to stop adjusting morning insulin as its making no difference if I eat anything with even a teeny sniff of a carb in it and we are adding 10u at tea time to see if that helps anything. Appointment on 12th July and kind of pre-discussed MDI if this doesn't work (she mentioned mixed as another option but I was like nope to that). I told her I'm fine with moving to MDI.
I've not come down by much since 22u and im on 50u now.

Now I'm not sure if I should hope for it not to work or to actually work 

Also to try injecting into my bum as thighs are just refusing to inject into. Getting resistance after the first unit or two and it runs straight out.
Thank goodness my tummy is fine with no issues at all.

I offered her a free lot of bloods since I'm going for some anyway. She was happy enough to take libres a1c so none for her but she will check on the results too when they are in 

Small steps in the right direction and happy that she's not leaving me in limbo.


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## rebrascora (Jun 24, 2022)

10 extra units at night seems quite a big increase, but I suppose you have Libre 2 so there is some safety net with the alarms. Well done standing firm about mixed insulin.  Really don't understand why they can't introduce meal time insulin but fingers crossed it will happen eventually. Look forward to seeing some lower waking levels soon but hopefully not at the expense of some lows through the night. 
I can understand what you mean about not being sure if you want the increase to work of not. It is almost like they are so reluctant to give you a bolus insulin that if the basal increase works you won't get it. I really can't comprehend why they do this but we seem to see it quite often on the forum these days. It causes unnecessary anxiety.
Fingers crossed it happens on the 12th!


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## Rae (Jun 24, 2022)

gll said:


> Hi all.
> 
> Some of you know the struggles I have been having lately. I just wanted to vent and possibly get some feedback on everything.
> I don't know what's normal and what's not anymore.
> ...


I really feel for you and honestly? After I got a HbA1c of 102 in December on 3.5mg dulaglutide and max empagliflizin, and with watching my carbs, intermittent fasting, and dropping some weight, and they STILL wouldn't try me on insulin alongside and refused to refer me up to specialist care, I was very much where you are. And I kind of did what you are saying. My sentiment was 'if they don't care about me, why should I'. So I stopped - I will tell you at this point that I have chronic depression and generalised anxiety disorder so it really doesn't take much for me to go off the deep end.

What I will say though was I spent the next 4 months exhausted to the point my knees would give out and I had to use my lunch at work to nap or I couldn't make it through the day. I had infection after infection. Eventually I ended up in DKA as a result of empagliflozin (no one warned me about this or taught me sick day rules and I didn't have a monitor on prescription). My DKA was severe enough that I was in resus for 16hrs, and 5 days in total in hospital. I have a lot of anxiety now about what could have happened or what if it were to happen again.

The reason why I'm telling you this is because YOU DESERVE BETTER, and you need to really believe that to keep up the energy you need to gett your care moved forward.

I'm now on insulin and while my sugars are still coming down, regular highs in the 20s seem to have stopped. This week I got trained for a libre and am wearing it as we speak. Fantastic bit of kit because it's already showing what I knew was happening with my double post meal peaks (it goes up for 1st 90mins, comes down for an hourish, then goes up again for a couple of hours before dropping pretty rapidly into range.) I'd told my health care team this was happening but they told me it didn't work like that. Even with the libre results, they questioned me this morning on whether I've been pitting in a second mealtime bolus. Which I haven't.

All my woes aside, and I really am just sharing here so you know it's not just you (and because I have adhd and caring by sharing is a thing we do), but you need to get a referral into a specialist service if only seeing GP, and get yourself taken care of. Even the bits where you have to push. Going onto insulin has been a breath of fresh air for me, because you CAN customise it to the kind of day you're having. Also, all the woes and gnashing of teeth that I would put more weight on haven't transpired. Also worth noting that the libre is available to T2's on prescription now if they are on both basal and bolus (the NICE guidelines have just changed).

Your life, and your quality of life, matters. That is your primary focus. I'm right here with you.

Best, Rae


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## gll (Jun 24, 2022)

@rebrascora  I think she's waiting for "3 months on basal" so protocol is followed and shouldn't be an issue to add it on (but didn't say that but the time fits).
Its only a few weeks anyway to wait. Chilling in the teens is much better than chilling in the 20s 
At the moment if I magically get down to under 10 (usually by being late for meals) it takes about 1-2 hours to hit the top of the peak in the mid-high teens and usually holds there for another few hours and then drifts slowly down but never down enough before the next mealtime etc.
Worse if its after 6pm and im all outta juice, pancreas clocked out 

@Rae its all just a bit crap isnt it  sounds similar to mine minus the DKA (although ketones were up and down a lot towards pre insulin)
I'm now managed by the DSN clinic (not GP) and its been a completely different experience. I had to fight to get GP surgery to listen to my fingerpick readings (vs the a1c) and yet the DSN doesn't even want a proper a1c and will go with the libre estimate happily.
Even basal has made a huge difference. like you i was 20s to "hi". Didn't get an a1c at that point and wouldn't like to think what it actually was.
As soon as I was dealing with a DNS and she heard readings shes like "insulin". No having to fight for it. Just simply you need it. 

I have self funded a sensor and got some unused spares from a very kind member here so I'm all libred up and got cover if I drop too low. Plus libre really does give DSN enough info to see what's needed.

Forgot again to ask about type testing. will (maybe) get on mdi and be like "soooooo about that c-pep thing"


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## Bruce Stephens (Jun 24, 2022)

gll said:


> As soon as I was dealing with a DNS and she heard readings shes like "insulin". No having to fight for it. Just simply you need it.


Finally! Someone with a bit of common sense.


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## Rae (Jun 24, 2022)

gll said:


> @rebrascora  I think she's waiting for "3 months on basal" so protocol is followed and shouldn't be an issue to add it on (but didn't say that but the time fits).
> Its only a few weeks anyway to wait. Chilling in the teens is much better than chilling in the 20s
> At the moment if I magically get down to under 10 (usually by being late for meals) it takes about 1-2 hours to hit the top of the peak in the mid-high teens and usually holds there for another few hours and then drifts slowly down but never down enough before the next mealtime etc.
> Worse if its after 6pm and im all outta juice, pancreas clocked out
> ...


Sigh, it is a bit. I'm glad you've got DSN on side, and if they add bolus to your basal, you will qualify for Libre on script for when you start to run short. There's also an offer for a free one on the website, so grab yourself one of those!

Hopefully this will have seen you turn a corner in your care. Fingers crossed for you.


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## gll (Jul 12, 2022)

I could cry (happy tears)
Moving onto abasaglar basal (equivalent to lantus aparently) and fiasp bolus.
Fixed dose at the moment and DSN said the answer to carb counting isn't no (more like not right now).
Follow up a week on Thursday (21st)


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## rebrascora (Jul 12, 2022)

So pleased for you Lou! Look forward to seeing some improved results soon. I have been anxious about this result all morning. I can breath a sigh of relief now! Phew!


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## gll (Jul 12, 2022)

shes sorting paperwork now so I should be able to get the script when I'm in seeing doctor this afternoon (the chemist having it is another story)


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## helli (Jul 12, 2022)

gll said:


> I could cry (happy tears)
> Moving onto abasaglar basal (equivalent to lantus aparently) and fiasp bolus.
> Fixed dose at the moment and DSN said the answer to carb counting isn't no (more like not right now).
> Follow up a week on Thursday (21st)


That's fantastic news. 
I too use Fiasp but it took some time to get used to so be warned - it may different for you as you have not used a bolus before. 
I find that they speed at which it works is dependent on my current BG. If my levels are above 10, it can take an hour or more to have any affect. If my levels are in the 4s and 5s, it works instantly and I can hypo before my food has had a chance to digest even if I inject and start eating straight away.


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## rebrascora (Jul 12, 2022)

Yes, I find Fiasp similar to @helli. Part of my difficulty/frustration was being used to NR and changing and just expecting it to act the same but a bit quicker and it didn't really do that all the time, so took a while to figure it out. You shouldn't have that problem of frustration as you are starting from scratch with it, but since your levels are quite high at the moment, it may be a bit sluggish to act initially and then possibly catch you out once your levels come down into range. You will get used to it though and just having a bolus insulin is going to be a huge bonus for you and give you so much more control.


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## EmmaL76 (Jul 12, 2022)

Whoop whoop! This is brilliant news. Keep us updated with how it’s going. Xx


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## gll (Jul 12, 2022)

Guess I'm starting tonight...
teatime:
(Humulin I gets tossed aside and never to darken my doorstep again)
Half of my fixed bolus dose with dinner (4u tonight)
bedtime:
Pick my basal time (before bed but I'm thinking around 9pm because I can be a bit sleepy sometimes and crawl into bed early)
34u
tomorrow:
full regime

She calculated it all as: I'm on 74u total now. half to be used as new basal and the rest split into 3 as bolus. (34u basal and 8u bolus)
I am going to log carbs on both libre and mysugr - but more detail on there (not asked to but I want to get a head start on working out ratios and coming back to her with any issues).

Would have liked libre to have been given some bedding in time but honestly doubted I'd be setup already and wasn't going to start it up until I was ready to go (sensor ended this morning).

She said if I got it all today, just to start tonight 
Will have alarms in under an hour, hypo stuff on hand in multiple places too.


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## gll (Jul 29, 2022)

Just a wee update

Did a basal adjustment last week and chilled out on it as I had half the week with good numbers and half with normal level of rubbish. I can keep going with adjusting that again until I am consistently at the 9s on waking (was waiting to see if it was the norm or a random good/bad couple of days).

Can now add corrections with a meal (still fixed units on meals and up to 2u correction) and also play more with bolus time as it still feels sluggish unless I'm a wee bit lower (as expected from advice from everyone with fiasp).

She did say carb counting will be hard with how my mornings go. I can have a low carb brekkie and still struggle but I'm usually fighting fotf at least. I do want to push for that eventually but will wait and see until after basal is sorted.

Progress is slow but its still progress


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