Any help/advice

[Deleted member 45091]

Been diabetic 31 years, was on humilin M3 twice a day for many years and control gradually worse, been moved over to nova rapid and levimir, pretty much house bound much of the time now feeling rubbish, on third eye op end of the month to save as much sight as they can in right eye as they can, feeling rough is an understatement. Having around 8 injections a day two levimir, and the rest nova rapid either correction dose or with food, not eating half as much as I used too, sugars either constantly high or drop really fast, for example today this after noon dropped really quick only had 3 units of Nova rapid and probably 50 grams of carbs then ate more as sometimes in the afternoon just falls off a cliff edge hence don't go out now, the insulin seems to not work at all or goes extreme, been tested for all sorts, sometimes can correct dose 3 times in a night, but only 2/3 units at a time as sometimes when it does work it seems to work too fast, iam seeing my specialist every few weeks now, had sugars like this for years and it's catching up now. Think she's going to try and get a consultant to see me, think there's couple year waiting list for a pump I think, don't drink or smoke quit them a while back, eating less and less and having 8 injections some days and struggle to get below 20s but when it does it just swings really fast, on a lot of eye drops dexafree,monopost,timilol,iopidine, and some diamox tablets to try and reduce the pressure in my eye as I've had ongoing problems with one of my eyes, not exactly sure how much these medications are contributing to my diabetes management. Just know with levels constantly like this only other issues are round the corner, iam scanning around 80/100 times a day on the libre 2 and blood test with a meter around 10/15 a day,I truly know what diabetic burnout is now, trying to stay positive, but just haven't got a clue what's happening just wondering what other regimes might be worth a try, sorry for the long post but just seem to not be getting any where at the minute, got to the stage where I won't even get a shower etc untill the insulin wears off as I haven't a clue what it's going to do, was thinking about going back to humilin M3 twice a day but not sure if that's going backwards, like I said pretty much housebound feeling rough kost of the time so any ideas advice I could look into would be much appreciated at this point even an joke would do. Thanks for reading Dan

 

[Antje77]

Hi @DannyH , I'm sorry you're in such a rough place at the moment.

All the screenshots you've shared show high BG, nothing close to a hypo.

for example today this after noon dropped really quick only had 3 units of Nova rapid and probably 50 grams of carbs then ate more as sometimes in the afternoon just falls off a cliff edge

This is today's graph, and it looks like you corrected the drop with food when you were at around 13, is that right?
Are you having serious hypos too? Or is there another reason you eat extra food when still high? A fear of hypos maybe?

In this example, you see you go right up after correcting the drop with food. If you're worried about the drop, you might try a little less food to correct, as it looks you ate more than you needed.

for example today this after noon dropped really quick only had 3 units of Nova rapid and probably 50 grams of carbs

It can also help to see if you can get your levels a bit lower before adding in more carbs. If you're hungry, by all means eat, but maybe don't add 50 grams of carbs to an already high BG. You could have a chicken thigh or such while waiting for your numbers to drop a bit.

so any ideas advice I could look into would be much appreciated at this point even an joke would do.

And here's a joke to cheer you up!

 

[Deleted member 45091]

Hi yep did eat alot as it was dropping so fast and I didn't no when it's going to stop, like I said only had 3 units of insulin and approx 50 grams of carbs and still crashed, then on top of that had around another 40/50 grams, which does sound crazy, but as I've said the crashes happen quickly probably 10mol in around 20/30 minutes knowing ive still got maybe over 2 hours of the insulin in the system, needless to say I am sitting at high now just done another few units then wait a few hours then go again, as before iam having less insulin than carbs and it still crashes at dinner, I don't eat after 4/5 o'clock in the evening leaving me hungry/sick all the time,.only had one slice of toast this morning and 6 units and it didn't really move that much, but the worst is it's not consistent another day having the same food and insulin may be different. Probably will change again as for whatever reason I can't predict what it's going to do

 

[jonathan183]

Sorry your having a tough time - I'm wondering if you have delayed stomach emptying making control much more difficult. What happens if you don't have anything to eat ? do you get stable blood glucose with predictable response to insulin doses ?

 

[Deleted member 45091]

Hi yes I feel a lot better, I've had it at night when I've managed to get my sugars down a little and not done a.correctional dose and the sugars have nearly flat lined, I've had stool samples done recently and inflammation tests as I've recently come out of hospital with stomach/bowel issues think the doctor did mention something along those lines, but as for blood tests most are coming back normal, but it does seem to come down first then kick back with a vengeance

 

[jonathan183]

You might find Dr Bernstein's diabetes solution chapter 22 useful ... and here

 

[Antje77]

I don't eat after 4/5 o'clock in the evening leaving me hungry/sick all the time

Why not eat stuff without carbs if you're hungry but don't want to complicate things further with insulin and carbs before bed?

 

[ert]

You might find Dr Bernstein's diabetes solution chapter 22 useful ... and here

And the other chapters... Dr Bernstein's Diabetes Solution is one way forward.

 

[Deleted member 45091]

Hi thanks for replies, I will get that book Dr Bernstein's, I watched the video of that gastroparesis and it does seem to fit alot, iam at the diabetic clinic again today I will mention how I get tested for it. I will be honest I did drink alot of alcohol for years and started smoking at 30 till 40, I wasn't to bad controlled as a child growing up its when I came into adulthood the bad habits kicked in, needless to say life as humbled me, and although at 41 and probably sound abit dramatic whatever time I've got left on this planet, IL will try anything to improve my health and live the best I can. If that means cutting out alot of carbs etc reajust things I will. One good thing most other tests IE kidneys liver etc are coming back ok, so not totally ready for the kn*****ers yard just yet. Once again thanks for your replies I will keep you posted as to what they say today. I don't usually do things like this or talk alot or ask for advice but I am finding it helpful so much appreciated thanks

 

[In Response]

Dr Bernstein is ONE way forward.
Low carb does not work for everyone, every lifestyle, every situation.
A doctor who says women must go on the pill because our hormones cause problems may not be treating the full person.

 

[Antje77]

I don't usually do things like this or talk alot or ask for advice but I am finding it helpful

Keep talking and reading and asking for advice!
Not only with us, but with your diabetes team as well!

 

[Deleted member 45091]

Just a quick update went to see the diabetes specialist yesterday, hba1c 100, she's getting the consultant in now, I've not got a clue what's going off. Just had a few units of the nova rapid and it's started going up, crazy, not sure if changing insulin will do me any favours as it might be the steroid and other eye drops Iam on, I don't hba1c and having up to 8/9 injections a day the joys of being diabetic

 

[Deleted member 45091]

Just a quick update went to see the diabetes specialist yesterday, hba1c 100, she's getting the consultant in now, I've not got a clue what's going off. Just had a few units of the nova rapid and it's started going up, crazy, not sure if changing insulin will do me any favours as it might be the steroid and other eye drops Iam on, I don't hba1c and having up to 8/9 injections a day the joys of being diabetic

 

[NicoleC1971]

Sorry you had such a bad result today. So the only way is down hba1c wise and I hope the consultant can give you some useful advice. He or she will have come across gastroparesis. You are still far too young to not keep fighting for a better quality of diabetic life. I'd agree that low carb is worth trying and there are type 1 docs who advocate it for type 1 in the UK. Have a copy of the Bernstein book if you want to borrow it btw so please DM me.

 

[Deleted member 45091]

Hi thanks for reply at 41 it should feel like I've got many years ahead but doesn't feel like it, totally flat out, not saying it's all there fault but different people and areas get different services, been over 20 again all day again feel sick shaky, not sure what ketones are doing, struggling to even type this, only had a small bit of soup for dinner so even low carbs IAM struggling. I just don't know what to do no more but thanks for replies means alot

 

[RoughcutAU]

Hey mate. Same age as you but alot newer on this journey so probably don’t really have much advice i can give thats worth anything. Just want to say chin up and take each day as it comes. One expression i’ve always liked “How do you eat an elephant? One bite at a time”.

 

[becca59]

Hi thanks for reply at 41 it should feel like I've got many years ahead but doesn't feel like it, totally flat out, not saying it's all there fault but different people and areas get different services, been over 20 again all day again feel sick shaky, not sure what ketones are doing, struggling to even type this, only had a small bit of soup for dinner so even low carbs IAM struggling. I just don't know what to do no more but thanks for replies means alot

You need to test ketones if numbers are that high. You should be prescribed testing sticks for your meter. Ask for them.

 

[Jigjack]

One thing I would start doing is if you are home most of the time then go out for long walks everyday. Try and get at least 15000 steps a day. This might help bringing down the sugars and keeping the line below 13 level. I would also take some sugary drinks while on walk to treat any surprise hypo. Seems like you are afraid of getting a hypo and then treating way before it reaches that point. Try waiting until your libre scans to about 8 and then decide if the graph is still trending downwards and if you want to treat it .

 

[Yaya10_10]

Hi, sorry to hear that you are in such a place.

My advice is to you is to lower your carb intake and insulin intake.

If you take lots of carb and you will need higher dose on insulin.

This means you will have lots of mistake.
First thing to do,,

fix your breakfast meal for example eat similar thing several day. I found if your bg in the morning
is good then it is more likely that it will be "ok" during the rest of the day.


less carb,,, less insulin this is the take home
message

but discuss it first with your DN

good luck

 

[EllieM]

Hi @DannyH how are you doing now? I realise that I'm probably a bit late, but with those levels and symptoms I'd be very concerned about possible DKA and I'd at the very least ring 111 for advice...