Any advice please

[Deleted member 45091]

Looking for any advice, been type 1 for 31 years, to say feel rough is an understatement, been ok for first years but last 10 or so been struggling, I know my length of time I should be a pillar of example but it's not quite worked like that, on Humalin M3 twice a day and the odd couple of units of nova rapid here and there, feeling ill all the time been to ae various times this year my sugars and nearly always above 20 faint weak etc, had various tests done most coming back ok apart from sugars, can't see out of one of my eyes at the moment after a another bleed after a victrectomy and cataract etc, currently testing around 100 times a day on my libre 2 and test around 20 a day on blood test strips, sugars are high but crash here and there not to a hypo as such but make me still feel rubbish, diabetes team are practical non existent just saying results abnormal but not abnormal for you, pretty much just staying house bound now feeling rough and exhausted all the time then a family member take me to my next eye appointment ect, I've gave up smoking over a year ago alcohol about 6 months ago, not sure what iam even asking just any kind of advice as I just really am struggling now

 

[EllieM]

Hi @DannyH, I think most of us long term T1s (well me anyway) have some periods of mediocre (or far worse) blood sugars but running at 20+ all the time must be making you feel awful.

If you've been running high then I'm guessing that you may be getting false hypos at normal readings - my recommendation would be to push through the discomfort as that will pass once your body gets used to normal levels.

I'm sorry your diabetic team aren't helping (that is their job), What happens if you increase your insulin to reduce your levels? (Or reduce your carbs). I take it you've tried the traditional basal/bolus regime? Have your clinic offered you a pump?

 

[Deleted member 45091]

Hi I've upped my insulin a small bit but iam hardly leaving the house as feel rubbish all the time, and get crashes when have a couple units and that makes me feel **** just all over the place at the moment, feeling rough sick hungry, last hba1c was 99

 

[EllieM]

Hi I've upped my insulin a small bit but iam hardly leaving the house as feel rubbish all the time, and get crashes when have a couple units and that makes me feel **** just all over the place at the moment, feeling rough sick hungry, last hba1c was 99

How low are you when you get a crash?

 

[Deleted member 45091]

Varies my crashes are probably 12/13

 

[Deleted member 45091]

It's the speed sometimes really struggling to override it, either scared of hypos, and body just feels I need food and sends it back up again, never used to be like it

 

[Juicyj]

Hello @DannyH Sorry to hear you're having a **** time.. How supportive is your DSN ? Can you get an email for them to report in your daily readings to try and get some one to one support ?

Getting your levels down after running so high for a while is going to make you more sensitive to false lows and also if your levels are falling quickly too, but getting through the pain barrier to get them more stable in single figures is vital particularly as your sight is affected by the constant highs. What's your diet like and could you try going low carb to reduce your insulin doses and get levels more stable ? I eat lowish carb as I don't like taking big insulin doses and to avoid errors too as the more insulin I take the higher the margin for error, it helps me to stay stable and in single figures most of the day.

What do you think would help you the most ?

 

[Deleted member 45091]

Hi just don't know what's best IL try anything at the minute I can feel low at 15, I've finally managed to get hold of a specialist that will see me on the 18th wasn't classed as an emergency etc by my gp to be reffered, iam bad IL still eat something when iam 15 as feel rubbish,low, but like you said prob need to push through the pain barrier, when I do have some nova rapid it crashes it quick I don't hypo but the crash makes me feel bad, I know alot of us diabetics have gone through stuff, but just feel absolutely awful with not much help, iam not very good at changing etc been on the same insulin for 30 years and my bodys not the same, over the years just got worse and practically housebound, but when people see me they think there's not much wrong, feels like just waiting for the next problem to come along, I know it's not a very inspiration story for a diabetic but just trying to find any form of help

 

[Hopeful34]

Sorry you're feeling rubbish. When your blood sugar starts coming down, and you want to eat, but you're blood sugar is still at 13-15, maybe try something with no carbs in it, like cheese or eggs or some meat etc, and then do something to try to distract yourself from wanting to eat carbs. Also, if you're happy using sugar free things, sugar free chewing gum or a sugar free boiled sweet may help.

 

[Daibell]

Hi. First you should not be on twice-a-day insulin as a T1 but Basal/Bolus. See NICE diabetes guidelines for T1. Talk to your GP about changing the insulin regime to be inline with NICE as it will give you better control. Why are you using test strips as well as the Libre 2? It's your choice but I use a Libre 2 and only rarely use strips. You don't mention your diet? Many on Basal/Bolus like me still need to keep the carbs down to avoid weight gain and large BS swings. Once you move to Basal/Bolus you will be able to balance the Basal (background) insulin and carb-count for the Basal (mealtime) insulin

 

[mansingh01]

Looking for any advice, been type 1 for 31 years, to say feel rough is an understatement, been ok for first years but last 10 or so been struggling, I know my length of time I should be a pillar of example but it's not quite worked like that, on Humalin M3 twice a day and the odd couple of units of nova rapid here and there, feeling ill all the time been to ae various times this year my sugars and nearly always above 20 faint weak etc, had various tests done most coming back ok apart from sugars, can't see out of one of my eyes at the moment after a another bleed after a victrectomy and cataract etc, currently testing around 100 times a day on my libre 2 and test around 20 a day on blood test strips, sugars are high but crash here and there not to a hypo as such but make me still feel rubbish, diabetes team are practical non existent just saying results abnormal but not abnormal for you, pretty much just staying house bound now feeling rough and exhausted all the time then a family member take me to my next eye appointment ect, I've gave up smoking over a year ago alcohol about 6 months ago, not sure what iam even asking just any kind of advice as I just really am struggling now

Hi- my advice would be to read book by dr Richard K Bernstein who is the longest survivor type 1. It will open ur eyes regarding food and insulin. He recommend low carb and less insulin. He explains how he reversed his complication which comes with being a type 1 diabetics. You need to go in a low carb diet in the mean time. Insulin does make you more hungry.

 

[chrisbug]

Hi DannyH, hope you are feeling okay today? (Considering everything you are going through).

12 months ago my Diabetes Team was at my GP surgery, what I didn't realize at the time, they were failing me, in 18 months there were 3 different nurses, no follow up, etc.
I think a lot of their problem was constraints with budgets, etc.
1 year ago I saw a different GP who referred me to the hospital. What a difference!
I finally got Libre, my long acting insulin was changed, My emails get a response, my phone calls get returned, I get good advice and support all the way now. This also gave me a huge psychological boost.

I know we are all different, with different needs and problems, and different medical experts (who have different opinions?) but you are being let down...
Are you able to ask for a second opinion?

One of the things I took from Dr. Bernsteins book is
Less carbs=less insulin=less mistakes.

Take care

 

[StewM]

One thing I'd just like to add is a lot of people are very quick to suggest Low Carb here. Low Carb is an option. There are other options. Given what Danny's said in the thread so far, it feels like there are issues here beyond diet (unusual supply of Insulin, for example) which makes it seem to me this is something that should be taken up with a Doctor. As Daibell pointed out, this doesn't seem to be following NICE guidelines, which we don't know if it's a mistake, or there's something else going on here.

 

[chrisbug]

Yes, agreed with the low carb thing.
I'm not a low carber; however:
I have a note book that I record how different meals have affected my blood sugar.
And that has helped me create an ongoing list of foods to avoid!

I also have my safe meals, (I think that must be all of my meals? I've had exactly the same thing for lunch day in day out for the last year, altered slightly at the weekends). Meals that I have are not necessarily low carb, but I know they won't cause a spike, which is what I'm always trying to achieve.

I have become more carb savvy, I'll avoid known causes of spikes which has led me to a samey set of meals, but I'd rather that than high blood sugars.

 

[Deleted member 45091]

Hi thanks for replys, just trying to get any help at the min, was as ae again on Friday having electric shocks through body all weekend, passing out can't see out of right eye after op couple months back and a bleed been having crazy flashes like fireworks thrown in eye making me fall over crash into things it's crazy at 41 but ae sent me home saying eye doctors are busy can't see me till Monday, sugars all over the place over 20s all weekend tried upping insulin struggling to even walk at the minute without falling knowing where I am, been to hospital so many times doing there same tests and all I get is non urgent, Iam just a number unemployed unimportant person to them it is what it is

 

[StewM]

Hi thanks for replys, just trying to get any help at the min, was as ae again on Friday having electric shocks through body all weekend, passing out can't see out of right eye after op couple months back and a bleed been having crazy flashes like fireworks thrown in eye making me fall over crash into things it's crazy at 41 but ae sent me home saying eye doctors are busy can't see me till Monday, sugars all over the place over 20s all weekend tried upping insulin struggling to even walk at the minute without falling knowing where I am, been to hospital so many times doing there same tests and all I get is non urgent, Iam just a number unemployed unimportant person to them it is what it is

Have you seen a Diabetes Specialist about any of this?

 

[Circuspony]

Are you able to start keeping a diary? Go right back to basics. Record when you take your insulin, when you eat, what you are eating, how many carbs, BG level before and 2 hours after eating. BG level before bed and when you wake up.

I find being presented with a week of data made the consultant take more interest in helping me sort out my issues

 

[ert]

Are you able to start keeping a diary? Go right back to basics. Record when you take your insulin, when you eat, what you are eating, how many carbs, BG level before and 2 hours after eating. BG level before bed and when you wake up.

I find being presented with a week of data made the consultant take more interest in helping me sort out my issues

Good post, but it's 5 hours after eating (2 hours is for type 2's). Unlike a normal person's insulin injected insulin follows a fixed curve over 5 hours and does not match the food you are eating. You expect it to be back down to pre-meal levels if your dose is correct.

 

[Ronancastled]

diabetes team are practical non existent just saying results abnormal but not abnormal for you,

That's disgraceful treatment or non-treatment.
As far as I've read there is an official complaints procedure that will get your treatment elevated.

can't see out of one of my eyes at the moment after a another bleed after a victrectomy and cataract etc

What's the prognosis like there, obv your high numbers aren't helping but at this stage it's not you're fault.
It frustrates me to see someone fall between the cracks, hit that complaint button hard

 

[EllieM]

You expect it to be back down to pre-meal levels if your dose is correct.

I think @DannyH 's issue is that his premeal levels are far too high. He needs help so that he can ignore the false hypos and normalise his levels so that he starts out at normal levels. I agree with @Ronancastled that the system has (so far) failed him.

@DannyH, it's great that you have an appointment with a specialist on the 18th. I agree with @Circuspony that keeping a diary will help. Very important in my opinion, explain the crashes and how you can't cope with normal blood sugars.

Lots of virtual hugs, it's never too late to improve your diabetic control. Please don't give up.