Another cry for help (T1 and struggling)

[Xane Tempest]

Hey folks. Thanks for coming by and I'm sorry of this thread starts off as a 'woe is me' thing or a sob story... But I'm not sure where else I can say these things...

Type 1, diagnosed between five and ten years ago (can't remember. Yay learning difficulties). Host to a heap of other conditions that cause physical pain and, of course, a hefty dose of depression.

Did the DAFNE course, learned a little but even the lovely nurses running the course couldn't tell me why my doses' effectiveness is so erratic.
Six units for 60g of carbs... Maybe three out of five times that works. The other two it sends me hypo, or doesn't work at all.

I see people living with this and it's really getting me down because I am trying really hard and it's just not working.

Currently on the freestyle libre 2 (life saver), FIASP rapid insulin and troujeo slow insulin.

I don't think I am being unfair in saying that this has ruined my life... Every aspect of it has been infected by the creeping source of mystery...
Even as I write this, I'm trying to figure out what to say to my girlfriend after ruining her day with my mood when my bloods tanked for no reason.

I just... I wish it was as easy as people told me it should be. Sorry for any low mood this thread caused, but I needed to say this somewhere. I don't care if nobody reads it.

 

[everydayupsanddowns]

I just... I wish it was as easy as people told me it should be. Sorry for any low mood this thread caused, but I needed to say this somewhere. I don't care if nobody reads it.

Absolutely no need to apologise. And thank you for being honest with us. You are among people who ‘get it’. And my guess would be that all of us have felt at least some of what you are feeling at times.

We care. We hear you.

And yes diabetes can be infuriatingly fickle and illogical some days. And it can be really hard on partners, families and significant others.

How long have you been using Fiasp? And do your struggles the inconsistent reactions to the same doses precede your Fiasp phase?

How are your injection sites? Any lumps or bumps?

 

[Inka]

Welcome @Xane Tempest 🙂 Sorry you’re struggling. The first thing is say is that whoever told you Type 1 should be easy, is totally wrong. It can be hard work and very wearing to deal with day after day. It’s like balancing on a tightrope sometimes. It also takes over your head because you can’t forget it no matter what else is happening.

So - you’re not alone and we understand how hard it can be.

Perhaps you’re not ready for suggestions at the moment, but we can suggest things that might help your control. I find that if I can push the diabetes back into its place by getting reasonable blood sugars, I feel a lot better, both physically and mentally. Sometimes it’s not a case of ‘getting the right dose’, it’s more a case of being quick with adjustments - ie eating a bit extra, taking a correction dose, or whatever.

No problem with having a moan or being upset. You can offload here 🙂

 

[Peely66]

Sorry to hear you're struggling @Xane Tempest.

Yes the Drs and nurse all say to you when first diagnosed "you can live with diabetes" but it's not "easy" and it's not them living with it.

I got sick of certain relatives and colleagues telling my they knew "all about" diabetes as they had a friend with it and my wonderful brother-in-law telling me that's "what I got for being vegetarian". I'll hold off repeating what I thought of that but, to my regret never told him.

Thankfully you're on here with other people who "get it". I've certainly felt many of the things you've expressed in your post.

 

[Amity Island]

Hey folks. Thanks for coming by and I'm sorry of this thread starts off as a 'woe is me' thing or a sob story... But I'm not sure where else I can say these things...

Type 1, diagnosed between five and ten years ago (can't remember. Yay learning difficulties). Host to a heap of other conditions that cause physical pain and, of course, a hefty dose of depression.

Did the DAFNE course, learned a little but even the lovely nurses running the course couldn't tell me why my doses' effectiveness is so erratic.
Six units for 60g of carbs... Maybe three out of five times that works. The other two it sends me hypo, or doesn't work at all.

I see people living with this and it's really getting me down because I am trying really hard and it's just not working.

Currently on the freestyle libre 2 (life saver), FIASP rapid insulin and troujeo slow insulin.

I don't think I am being unfair in saying that this has ruined my life... Every aspect of it has been infected by the creeping source of mystery...
Even as I write this, I'm trying to figure out what to say to my girlfriend after ruining her day with my mood when my bloods tanked for no reason.

I just... I wish it was as easy as people told me it should be. Sorry for any low mood this thread caused, but I needed to say this somewhere. I don't care if nobody reads it.

Hi Xane,

Reading your post @Xane Tempest is a good example of the reasons I enjoy this forum. It gives like minded people the chance to respond to the genuine difficulties faced every day by each of us (not just the trivial woe and sob stories you hear so often from people that don't really have anything to complain about). Your problems are real and worthy of posting on this forum, so no need to make any apologies.

I couldn't agree more with you about the Freestyle libre 2, it is incredibly helpful, esp if you get random results for your efforts, plus its evidence to discuss with your diabetes team.

I know you probably know all this but...I was wondering, are your days the same in terms of activity? I ask, because you say some days your mealtime bolus insulin matches the carbs and other days you go hypo. This can certainly happen for diabetics using insulin as sensitivity to insulin can be affected dramatically. One could literally need half the amount of bolus following exercise for anything up to 48 hrs. The other thing what @everydayupsanddowns mentioned about fiasp. I have read the quickness of fiasp action can wear off after a few weeks. Timing of boluses can also dramatically affect blood glucose readings. Have you already tried sticking to a week of exactly same activity, exactly same foods and carbs, same bolus timings etc? If you can keep all these things identical it might make it easier to eliminate causes.

 

[trophywench]

I think I'd find it more difficult to judge the amount of carbs (to calculate the insulin I'd need) in vegetarian dishes. eg when I have chilli con carne and rice, the theory of DAFNE says I not only have to account for the rice but also the onion, tomato and tinned red beans in chilli sauce, plus the packet of dried chilli sauce mix I lob into the mix. However, in practice, I carb count the rice and round it up to next 10 above, so if the rice = 60g, I bolus for 70g. Similar for curry and rice or pasta dishes. Plus of course if whatever has A Lot of cheese, or anything else with a lot of any fat, that slows down the absorption of the carbs by the body considerably so essential to at least split the bolus for it, some upfront and the rest later. If it's meat, potatoes and one or 2 other veg I only need to count and bolus for the spuds. If it's a roast beef and yorkies dinner = spuds and yorkies. Oh, and a tiddly bit for roast parsnips if any. Pork and stuffing dinner - spuds and a tiddly bit for the stuffing (cos of the breadcrumbs in the stuffing) I expect that were I actually vegetarian, I'd have to work out again exactly what I needed to count and bolus for - cos all carbs are by no means equal - so can I assume you have already had to do all that anyway?

 

[rebrascora]

the theory of DAFNE says I not only have to account for the rice but also the onion, tomato and tinned red beans in chilli sauce, plus the packet of dried chilli sauce mix I lob into the mix.

Jenny you must have done a very different version of DAFNE to me because on my course they only counted the main carb components ie the rice with a chilli and NOT the kidney beans, onion, tomatoes etc.

 

[Amity Island]

Jenny you must have done a very different version of DAFNE to me because on my course they only counted the main carb components ie the rice with a chilli and NOT the kidney beans, onion, tomatoes etc.

Hi Rebrascora,

That is also what I was taught on the DAFNE course I attended in around 2010. Don't count the beans, veg etc. I soon learnt however that beans do have considerable carbs. So I do bolus for them.

 

[Inka]

I’ve never done a DAFNE course but my dietician told me to count the beans and pulses unless it was a tiny amount eg a sprinkle of chickpeas over a salad. I don’t think it really matters as long as you’re consistent.

@Xane Tempest How are things at the moment? I hope you’re feeling a bit better.

 

[helli]

I have done DAFNE equivalent and I have done "advanced" training for a pump. Regarding carb counting, there were a few points which are relevant to this conversation
- pulses such as chickpeas. Some of us digest them and the carbs whereas some of us find they "pass through". So we need to check which group we are in by testing - eat chickpeas and test what the impact is.
- initial advice was to only count the big budget carb items such as bread, pasta, potatoes, ... This is because when on MDI, any in accuracies can be "mopped up" by excess basal (our needs are not the same 24x7 even though a flatter profile basal is "better") and rounding errors because we can only inject full or half units. With a pump, I was told to count ALL carbs because we should have no excess basal and because we can dose bolus down to 0.05 units.
- if you are vegetarian (or you eat veggie most of the time, as I do), carb counting is no harder. I do it every day so, just as meat eaters know they may have to dose for the cornflour in their gravy or the breadcrumbs in their stuffing or whatever it is they put in sausages, I know to dose for my kidney beans

 

[Xane Tempest]

Hey to everyone.
I just want to say thank you to all of you for your kind words and understanding. I really didn't expect to get more than a message from a mod asking me to reel it in. I can't thank you all enough.

I suppose I should answer some questions...
@everydayupsanddowns My irregular results have been from the offset (160 units for a pizza one day, 80 another), so they predate using FIASP, but the FIASP has been a bit more regular, in as so far as it works in the predicted time at least (it'll be working in two hours, rather than four to eight of others)
My entire midsection feels a bit like I'm full of marbles, so I've got a lot of lumps, but some I had before I was even diabetic so I don't know what to expect with those (Doctors say they're just fatty deposits)

@Inka I'm not as ready for suggestions as others may be, but only because I have tried so many things and the fact that thy don't work has really ticked me off... You're told one thing, and it doesn't work for so long you start to get a little impatient and unwilling to listen... But that's the good thing about written things, they don't get 'forgotten' like if you're relying on something you vaguely remember being told once in a hospital.
Suggest away and I'll either try it anew, or explain what happens to see if there's something I'm doing wrong.

@Peely66 My 'it's your own fault' was from my mum for drinking energy drinks... Not the kind of thing you want to be told, certainly. I'm sorry to hear you have a similar story and will reserve my comments of what they can do to empathise with us. The support from this thread alone has been a massive boost, thank you!

@Amity Island I can see what you mean about the forum... I was honestly not expecting any of this kind of response and I am pleasantly surprised (a rare occurrence these days).
As for exercise and the such. I have relied on exercise when a delivery of insulin was delayed and didn't even need to inject one day at all! Physical activity is three times more effective than insulin ever is and really knocks my numbers back into line.
As for a baseline... That's a little difficult as diabetes is just one in a huge melting pot of other conditions, and they affect my diabetes considerably through pain and other factors.
I've spent a week eating the exact same meal every day, with identical physical activity and the insulin I needed varied by up to thirty units a day. One day, I was in too much pain to use one of my arms, I had to flat-out double all my doses, then take a second identical dose later as an adjustment.
So... err... yeah, it's a bit complicated apparently...

@trophywench I have not done much vegetarian dishes myself, but I find that there are a shocking number of 'hidden carbs' that you can only really find through experience. A single slice of medium wholemeal bread is meant to be like... one unit I think? I have to take up to four. I made a 'cook-book' of meals I did that included the insulin value for the approximate measurements (sometimes you have to throw in another potato etc).
One thing that I have tried was a keto diet. I lived on pure protein (totally the opposite of a vegetarian with what I was eating) and I still needed to inject five units per meal, but it didn't vary. I didn't need to inject at all for eggs (again, this was only eggs. nothing else...)
It's not a diet I recommend for anyone unless they're trying to lose weight and can put up with Carb Cravings that made even sweeteners look good (I know we get this usually, but keto Carb Cravings were a whole new level!)

@helli I don't really have much to add here... I found the DAFNE course was a good starting point, but when everyone's ratio was nice and simple (1:10, 1.5:10 etc) mine came out something like:
1:10 until it exceeds 10 units, then add 10% for every 'base' 10 units rounded up (IE: 110g carbs, 12 units. 210g carbs, 24 units
If I'm in pain, add 10% for each limb
If the weather is bad, add 4 units
If the meal is heavy in bread, triple all bread-related carbs for the calculation
If you're having a cup of tea with it, add 4 units...
IF you're ill, double the units if it's below 50. Double and add another half if it's over 50.
So... yeah, I guess I have to do a lot of math when having a sandwich. (Sausage sandwich with bbq sauce and cheese is 7 units.)

For all who are thinking about a DAFNE course, it's worth going! Even if you're just told about all the stuff you already know, it can be worth it for the ONE thing you didn't know, or weren't sure about.

Once again, thank you all for your amazing support. I can't believe the sheer overwhelming support offered here. Thank you!

 

[Inka]

I don’t have any magic answers sadly @Xane Tempest and it sounds like you have a lot going on, which is making control of the Type 1 much harder. I really sympathise. Type 1 by itself is a pain in the proverbial, so having other things on top of that must be extremely wearing, physically and mentally.

It looks like you’re on fairly large doses - you probably already do this, but splitting big doses helps absorption. Also, if your tummy doesn’t work well, try other places. I have poor absorption from my tummy too yet health care professionals are obsessed with it being ‘the best place’. I find my thighs are more predictable.

Are you on Metformin to help your insulin sensitivity? Could any of your other meds be causing your highs or making them worse, directly or indirectly (eg weight gain)? Possibly the larger insulin doses are contributing to poor absorption so any way to reduce them might be beneficial?

I see you tried keto. There’s also the option of a whole food plant-based diet (basically very low fat vegan) which can improve insulin sensitivity massively. It might be you do need to limit your carbs a bit - ie not as low as keto, but a lowish level.

Just ideas. I personally find trying to sort things and research makes me feel more in control of the mental aspect of diabetes, but I can also understand why you might be fed up of suggestions that don’t work, so feel free to ignore me.

Wishing you well 🙂

 

[rebrascora]

@helli I don't really have much to add here... I found the DAFNE course was a good starting point, but when everyone's ratio was nice and simple (1:10, 1.5:10 etc) mine came out something like:
1:10 until it exceeds 10 units, then add 10% for every 'base' 10 units rounded up (IE: 110g carbs, 12 units. 210g carbs, 24 units
If I'm in pain, add 10% for each limb
If the weather is bad, add 4 units
If the meal is heavy in bread, triple all bread-related carbs for the calculation
If you're having a cup of tea with it, add 4 units...
IF you're ill, double the units if it's below 50. Double and add another half if it's over 50.
So... yeah, I guess I have to do a lot of math when having a sandwich. (Sausage sandwich with bbq sauce and cheese is 7 units.)

Hi

Firstly I want to say how sorry I am to read of your struggles and can understand your frustration, especially when you are dealing with other conditions too.

Just wanted to say, this quote from your post above struck a chord with me and whilst it is to a much lesser extent, I can relate to some of this but I follow a low carb (not keto) way of eating to minimize the impact. I average about 70-100g carbs a day. If I fancy a high carb treat occasionally, like last night I had a sweet mince pie, I have one but accept the results will be unpredictable and use my Libre to monitor and deal with the fall out.

Pre bolus timing is also a huge factor and particularly with Fiasp I find that if my levels are high and I eat before waiting for them to come down to 5 or 6 the insulin is less effective so it needs quite a bit more..... or sometimes you would think I had just injected water. Pre bolus timing can make a significant difference but so can your premeal reading.

As an example, I inject my breakfast bolus as soon as I wake up but I then need to wait about 45 mins before I eat breakfast (just 30mins mostly at other times of day) in order to keep things on a reasonably even keel. If I eat before that I spike badly, even with a relatively low carb breakfast and sometimes it doesn't come back down into range again, whereas if I wait and watch my Libre to see when the Fiasp is starting to reduce my levels and eat when I get into the low 6s or 5s, I get quite predictable results. Same breakfast most mornings but if I don't give that Fiasp long enough to work it messes up my levels for the rest of the day. I now have a routine for getting washed and dressed and making breakfast and having a coffee and catching up with the news before I eat the breakfast and I have it ready to eat so that when my Libre shows my levels dropping it is all ready. If I wake up in the 9s and 10s it will need a bit longer than if I wake up in the 4s, so the Libre has been key to getting the timing right.
I very rarely eat food containing carbs (no problem with a chunk of cheese or some cooked meat or boiled egg though) when my levels are above 7.... and 8 is my red line because above that and it screws everything up.

Also, you don't mention your basal insulin in all of this and Toujeo can be a tricky one because it is a very long insulin like Tresiba. I use Levemir and I have to tweak my doses quite regularly to cater to the changes in my basal needs and having the correct basal dose and type of basal insulin for your body can make a big difference in how everything else works, so I wonder if you might be better off with a basal insulin which is more flexible, like split dose Levemir. I know it then brings in another factor that you need to do some mental wrangling over but it can make all the difference in the world.

It does seem that some people's bodies are much more stable BG wise than others and I certainly seem to need a lot more tweaking than many other people but I do feel that low carb helps me with that. Yes I do have to inject from protein and I might end up doing 8 or 9 injections some days (2 being basal) to keep my levels in range, but I rarely inject more than 5 units at any one time and the release from protein is very slow in comparison to carbs so I know I usually need a unit or 2 top up a couple of hours after my meal to deal with it. Again, Libre is invaluable with this because instead of doing calculations I can just respond to my Libre readings. I have to be honest, I do very little carb counting these days unless I eat out (and that doesn't happen very much in the current climate). That takes a lot of mental strain off me and as my meals are mostly low carb, I am never going to be more than a unit of two out. I also enjoy my food and experiment with tasty new recipes, so I don't feel restricted in my eating now but it did take me about 6 months to get my head around low carb eating and eating more fat and finding foods that I enjoyed. Once the initial couple of months were over I found that I didn't crave anymore and that has been one of the main reasons why I continue to follow this way of eating now, as it gives me the control over my eating that I have struggled to attain for many, many years....

Anyway, I just wanted to mention those points as they have all helped me with my somewhat unpredictable levels.

 

[everydayupsanddowns]

Once again, thank you all for your amazing support. I can't believe the sheer overwhelming support offered here. Thank you!

Awww! Thank you, lovely to see you posting again. And thanks for being part of the community. That’s what we are all doing really… comparing notes, asking questions, trying to figure stuff out and support each other along the way.

I've spent a week eating the exact same meal every day, with identical physical activity and the insulin I needed varied by up to thirty units a day. One day, I was in too much pain to use one of my arms, I had to flat-out double all my doses, then take a second identical dose later as an adjustment.

How frustrating! Can’t remember if you have mentioned Libre or any similar continuous sensor, but something like that feels it might be really helpful with the unpredictability of your diabetes.

Do you know the cause of the pain? Pain, injury, illness and stress can all have glucose-raising effects - though I’ve always found this a bit unpredictable with sometimes seeing a big effect and other times no effect at all, so I find it hard to predict.

My entire midsection feels a bit like I'm full of marbles, so I've got a lot of lumps, but some I had before I was even diabetic so I don't know what to expect with those (Doctors say they're just fatty deposits)

These fatty deposits sound like liperhypertrophy, and might be the cause of some of the chaos you experience? Lipos and scar tissue have a nasty habit of messing with insulin absorption. One member @trophywench has had experience of whole doses seeming to get ‘locked up’ in scar tissue for days or months, only to reappear/release later and causing massive hypos.

I think @inka’s suggestion of looking for alternative sites is a good one. Or do you have ‘marbles’ everywhere?