Type 1 what to expect

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hdpiwdpwpdw

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Type 1
I have type 1 and have to take large boluses with meals which causes massive swings and hypos later in the day. This really got me down and I decided I had diabetes distress so tried to contact the team looking after me at the local hospital and it has been an absolute nightmare.

Emails not replied to, only being able to get a response by using PALS, being told I need to speak to a consultant via a GP referral only to be rebooked with the original DSN

I have read some of the threads here and they seem quite positive but my interactions with the NHS seem to be really poor and I'm completely p'd off with the whole thing

Am I experiencing something unusual or is this the experience of the disillusioned and disengaged who don't post here and rely on the NHS and can't go private where the staff are
 
I have type 1 and have to take large boluses with meals which causes massive swings and hypos later in the day. This really got me down and I decided I had diabetes distress so tried to contact the team looking after me at the local hospital and it has been an absolute nightmare.

Emails not replied to, only being able to get a response by using PALS, being told I need to speak to a consultant via a GP referral only to be rebooked with the original DSN

I have read some of the threads here and they seem quite positive but my interactions with the NHS seem to be really poor and I'm completely p'd off with the whole thing

Am I experiencing something unusual or is this the experience of the disillusioned and disengaged who don't post here and rely on the NHS and can't go private where the staff are
Hello & welcome. It makes me wonder with the positives I’ve read & heard first hand from T1s. If I was to follow the advice I’ve read regarding pushing for the care (tools even.) I need, it would put me in handcuffs?
 
Hi and welcome.

I have learned far more from this forum than I have from the 10 min telephone appointment I get with my consultant once a year. Not sure if I have a DSN as such. I have never had appointments with one. Sadly the diabetes clinics are under significantly increased pressure due to Covid causing an increase in diagnoses as well as significant complications for some infected with the virus who were already diagnosed.
If you have some time and the interest, you can learn far more here from people who live with it day after day and meal after meal and night after night than from a nurse or consultant who mostly just knows the theory.

Do you have a CGM (Constant Glucose Monitor) to track your levels and which insulins do you use?
How long have you been diagnosed?
 
Hi and welcome.

I have learned far more from this forum than I have from the 10 min telephone appointment I get with my consultant once a year. Not sure if I have a DSN as such. I have never had appointments with one. Sadly the diabetes clinics are under significantly increased pressure due to Covid causing an increase in diagnoses as well as significant complications for some infected with the virus who were already diagnosed.
If you have some time and the interest, you can learn far more here from people who live with it day after day and meal after meal and night after night than from a nurse or consultant who mostly just knows the theory.

Do you have a CGM (Constant Glucose Monitor) to track your levels and which insulins do you use?
How long have you been diagnosed?
Tresiba and Fiasp. On the days I work I fast after taking 2 or 3 units to offset the dawn effect and BS are stable. On 'eating days' I take 5-10 units of Fiasp for 10g of carbs which seems to lasts 6+ hours and need to eat multiple snacks to offset the later effects of Fiasp, typically there is a massive BS fall about 3 hours after taking Fiasp. I'm not injecting into lumps and I'm not overweight
 
How frustrating @hdpiwdpwpdw ! Have you always used Fiasp? I’m wondering if a different bolus insulin might help. That’s a big dose for a small amount of carbs.
 
I find Fiasp very short acting, in that it is pretty well finished after 3 hours and it is not known for a sting in the tail like Humalog, so I am wondering if it is perhaps the timing which is the problem and you have been injecting more Fiasp than you actually need because you are spiking high, rather than injecting the Fiasp early enough. Many people are lead to believe that Fiasp is really fast acting and you only need to inject it a few minutes before you eat, when in reality for some of us, it is only marginally more fast acting than Novo(not so)Rapid! 🙄 Just to clarify, I used to need to inject my NR 75 mins before breakfast to prevent my levels spiking up to 15 every day and then crashing back down. I only need 45 mins prebolus time at breakfast with Fiasp..... which is still a heck of a lot more than our health care professionals would have us believe we need. My consultant was horrified when I told him, but he can't argue with my Libre graphs. I also find that if my levels are high when I wake up (9 or above), the Fiasp will need even longer to get working before I eat, sometimes hours. If I eat before my levels come down to 5 or 6 and my Libre arrow shows they are coming down, I will be high all day unless I stack corrections and then it will take far more corrections to bring me down.
If you are only prebolusing 5 or 10 mins with your Fiasp at breakfast then I wonder if you have increased the dose thinking that is what is needed rather than increase the prebolus time. Nit that I am suggesting you go straight to prebolusing 45 mins in advance of breakfast like I do, but just that you reduce your dose and start increasing the prebolus time by 5 mins each day until you find the sweet spot timing for you.
It is also important to note that I only need 10-20 mins prebolus time at other meals later in the day, but at breakfast when the Fiasp is having to battle against a strong tide of glucose release from the liver (ie Foot on the Floor or Dawn Phenomenon) it needs longer. Like you I need 1.5-2 units of Fiasp as soon as I wake up even if I am not having breakfast to deal with that liver dump.

Large doses of insulin are much less predictable and can make you more insulin resistant. Also if you are injecting larger doses into just one site then I think that can cause problems too. If I need any more than 10u I split it and inject in 2 different sites, but it is extremely rare that I need as much as 10 units of Fiasp. Getting the timing right is the key thing.
 
Bolus earlier and split bolus so you don't take as much up front, then monitor what happens after 30min an hour, etc., and do correction doses.

That does sound like rather a lot of insulin.

Do you have a graph you could share showing food/injection times and quantities?
 
Eating low carb can make you insulin resistant and given your low ratio, i guess you are probably low carb because with that ratio it would be hard not to be.
Fasting probably doesn't help long term either.
My understanding is that the body becomes insulin resistant to prioritise the limited carbs for the brain.
Also, with low carb you have to factor in fats and protein to your 'carb counting'
I became quite insulin resistant when i was low carb...i went down to a ratio of 1 to 3.
I am now between 1 to 12 and 1 to 25
A low fat, plant based diet can increase insulin sensitivity quite quickly. Excercise also helps. Your ratio can change really quickly if you up the carbs and veggys, down the fat, and up the excercise. Possibly eat more meals, more frequantly, as a way to up the carbs whilst your ratios adjusts

Also, if you are going low later your ratio is probably wrong. Try counting ALL the carbs you have to eat to deal with a particular insulin dose...both the meal and the hypo eating, and use that to calculate your ratio. Split boluses, or even meal and a later planned snack, may help.
You may find yourself peaking as you will be taking more carbs in your meal. A short walk after eating should cut the peak off and help with insulin sensitivity.

As for getting advice from the medics, it has its place, but my view is its MY diabestes, my eyesite, my feet etc, therefore its in my interest to ensure i am the expert in how best to deal with my levels.
 
I agree with all above but I'd like to know that, first of all, the OP's basal is about right. If his/her basal is not right then the bolus is constantly chasing a moving target.

@hdpiwdpwpdw (getting that address right is a challenge in iself - note to self, play more pelminism!) the basal of Tresiba is a very long duration insulin and it is marketed as an insulin that lasts 40 hrs. So today's Tresiba dose is topping up yesterday's dose. I find that a great advantage - once I've got my Tresiba background right, then I know everything else to manage my BG is done by:
my food and carb counting;​
thus my bolus insulin for that food;​
my bolus to correct highs;​
or small snacks which might not need bolus either as modest BG nudges up or basic hypo corrections;​
and my activity or full on exercise levels - which can be very different daily, or mid week from weekends.​
These 5 "tools" or "levers" for managing my BG are complicated enough, without trying to use my basal as an extra tool and have a 6th thing to consider in the tool selection process.

Some others have a different view about Tresiba and consider it inflexible; we're all different and do the simplest of things diffferently according to what we've previously learnt or found works for us. Tresiba is what you've been prescribed, so let's work with what you've got.

I was told that basal or background longer term insulin is needed to manage glucose from everything that one's body is doing in the background, just keeping us alive and safe. The shorter duration bolus insulin is for food - managing glucose from the carbs that convert into glucose and are moved into our blood.

Through a 24 hr day various hormones and enzymes can trigger the liver to release glucose from its glucose store. 3 main examples are adrenalin, cortisol and growth hormones; there are others. We are often unaware these glucose releases are happening; or rather we would be unaware if we didn't have finger pricking with glucose test meters and nowadays Continuous Glucose Monitors (CGMs). If we weren't diabetic those glucose releases from the liver would be managed by our pancreas releasing insulin to quickly and routinely move the excess glucose in our blood to the millions of individual body cells and thus into muscles or various organs. Much of those glucose releases can be in the small hours of the night when our brains are often most active doing its housework tasks, while we sleep.

I'm going to pause here. It would be a great help to know @hdpiwdpwpdw that you do have CGM? How long have you bèn diagnosed T1? After diagnosis did you start on Tresiba as has that been changed at some point? Did anybody tell you anything about out getting your Tresiba basal right first? With a little more info about your background I'd be happy to talk you through how to optimise your Tresiba if that is needed.
 
@hdpiwdpwpdw, in a reply to a newer member from his post called "Insulin corrections" the following was said:
That’s a really great learning experience @Mbabazi (and I'd be perfectly happy waking at 7ish). I think this outlines the complexities behind balancing insulin on board, resistance at higher levels, level of activity 24-48 hours earlier, carb estimation errors and all the other (many!) factors that can affect the outcome of a correction dose.

If I see a rapid rise after a meal and suspect it was a carb estimation error I’ll sometimes consider a correction within 4 hours, but I’ll only look at the BG above 9.0 (since that’s the suggested 2hr max). However, most of the time it is simply an insulin action / carb absorption timing mismatch and 5 minutes up and down the stairs or a brisk walk around the block is enough to kickstart my insulin and level off the rising numbers 🙂
I remarked:
@everydayupsanddowns, I think that is a brilliant response. It explains so succinctly why Gary Scheiner tells his readers that "Diabetes is Complicated, Confusing and Contradictory".

I probably didn't need to be told either your response or Gary Scheiner's reflections on day 2 of my diagnosis (post op still in ICU!). But if only I'd been told that a couple of weeks later and then reminded a couple of months later, with your "D is fickle" and be aware of "odd socks days" (to reinforce the theme) - then I think so much of the frustration, fear and stress that went on for so many of those first months would have been eased.

@hdpiwdpwpdw I suspect a lot of this general complexity, confusion and contradiction aligns with what you've told us so far.

Couple of books which might help:
Gary Scheiner's "Think Like a Pancreas", which I found very helpful. Another book I turn to when I feel very adrift is Ragnar Hanas's "Type 1 Diabetes in Children Adolescents and Young People"; I'm 74 and found it great for me as well.
 
I use Fiasp and find if my levels are less than 8 I am fine doing it 15-20 mins before eating, if higher then a little longer.

It does seem like a lot of insulin for the carbs, I know everyone is different but I have 1U for 10g (lunch is 1.5U)

As others have said fasting won't help long term, or low carb, you need food and carbs to be fit and healthy, please don't restrict these.

Before I moved here the NHS care I got was so poor, I struggled even to see the GP, and any practice nurses only knew T2 and would misadvise me every time. I couldn't get under the hospital.

Since moving it has been completely different and life changing. Sadly it is a postcode lottery. The support I get now is amazing, regular DSN and Consultant appointments, with my GP team supporting too, and a nurse there who knows what she is talking about. I can contact the DSN team via call or email and text anytime.
 
I have type 1 and have to take large boluses with meals which causes massive swings and hypos later in the day. This really got me down and I decided I had diabetes distress so tried to contact the team looking after me at the local hospital and it has been an absolute nightmare.

Emails not replied to, only being able to get a response by using PALS, being told I need to speak to a consultant via a GP referral only to be rebooked with the original DSN

I have read some of the threads here and they seem quite positive but my interactions with the NHS seem to be really poor and I'm completely p'd off with the whole thing

Am I experiencing something unusual or is this the experience of the disillusioned and disengaged who don't post here and rely on the NHS and can't go private where the staff are
I have exactly the same problem.when it comes to support from the nhs. Ive had togo through pals too.
 
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