Newbie here!

[rachelshane]

Hi everyone! This is my first post here, although I have had T1D since 2004, and my younger sister since 1992, I have been aware and in awe of the work that diabetes.org.uk do for a long time!

I was diagnosed aged 21, and was optimistic with the promises of new technology, reduced likelihood of complications, and a stem cell transplant or other cure within the next 10 or so years - I thought!!

Well, I have survived having 2 children, aged 6 and 8 now, but think I am at that exhaustion and burn out phase with my diabetes management. After children I was diagnosed with hypothyroidism, and after covid lockdowns, I put on about 2-3 stone weight, and my HbA1c is estimated at about 9% today.

I feel I don't know where else to turn, except the wider diabetes community. Many of you have probably been where I am, have the tshirt, but have come out the other side.
I'm looking for some optimism, motivation, and to get bigger Time in Target ranges (I couldn't possibly abbreviate that phrase!!!).

So, into the unknown of blogging, and this being my first time, I hope I can sensibly, and with some ease, get the improvements I am hoping to achieve. All fingers crossed!!!!!!!!!!

 

[Jenny65]

Hi everyone! This is my first post here, although I have had T1D since 2004, and my younger sister since 1992, I have been aware and in awe of the work that diabetes.org.uk do for a long time!

I was diagnosed aged 21, and was optimistic with the promises of new technology, reduced likelihood of complications, and a stem cell transplant or other cure within the next 10 or so years - I thought!!

Well, I have survived having 2 children, aged 6 and 8 now, but think I am at that exhaustion and burn out phase with my diabetes management. After children I was diagnosed with hypothyroidism, and after covid lockdowns, I put on about 2-3 stone weight, and my HbA1c is estimated at about 9% today.

I feel I don't know where else to turn, except the wider diabetes community. Many of you have probably been where I am, have the tshirt, but have come out the other side.
I'm looking for some optimism, motivation, and to get bigger Time in Target ranges (I couldn't possibly abbreviate that phrase!!!).

So, into the unknown of blogging, and this being my first time, I hope I can sensibly, and with some ease, get the improvements I am hoping to achieve. All fingers crossed!!!!!!!!!!

Hi Rachel, and welcome to the forum.
Covid has a lot to answer for, as it caused me to gain weight too, so I understand how you came to be where you are and sympathise. I am type 2 so not sure completely what advice to give as you will be taking insulin so can probably tolerate carbs better than me.

Someone will be along to give better advice soon, I just wanted to say hello and welcome you to this caring forum x

 

[rachelshane]

Hi Rachel, and welcome to the forum.
Covid has a lot to answer for, as it caused me to gain weight too, so I understand how you came to be where you are and sympathise. I am type 2 so not sure completely what advice to give as you will be taking insulin so can probably tolerate carbs better than me.

Someone will be along to give better advice soon, I just wanted to say hello and welcome you to this caring forum x

Hi thanks a lot. I really appreciate the comments. Your journey has been amazing, and I only hope I can have a successful journey myself. Currently, I'm all out of ideas with my diabetes, as I usually spend my energy and most of my time worrying and thinking about all of the other people in my life. But since turning 40 in July, I think it's time for me to prioritise myself a little, and start working on my own goals and objectives!

Your diet changes since just June, have helped you lose at least 2 stone, so that must have been quite hard work. What sort of food swaps have you done? I joined slimming world a year ago, and although I can sometimes stick to it, my will power, hypo's and exercise, increase my appetite, and decrease my patience to put enough thought into my food choices. All of which, I want my attitude with food to change as well.

 

[Bruce Stephens]

I'm looking for some optimism, motivation, and to get bigger Time in Target ranges (I couldn't possibly abbreviate that phrase!!!).

Taking the trivial question, I think people often use TIR, for Time in Range.

 

[Jenny65]

Hi thanks a lot. I really appreciate the comments. Your journey has been amazing, and I only hope I can have a successful journey myself. Currently, I'm all out of ideas with my diabetes, as I usually spend my energy and most of my time worrying and thinking about all of the other people in my life. But since turning 40 in July, I think it's time for me to prioritise myself a little, and start working on my own goals and objectives!

Your diet changes since just June, have helped you lose at least 2 stone, so that must have been quite hard work. What sort of food swaps have you done? I joined slimming world a year ago, and although I can sometimes stick to it, my will power, hypo's and exercise, increase my appetite, and decrease my patience to put enough thought into my food choices. All of which, I want my attitude with food to change as well.

My main changes have been to cut out pasta, rice, bread and potatoes, although I do eat a little potato and wholemeal bread occasionally my main food group is now vegetables, they fill at least half my plate, and mainly green veg. A comparison of before and after meals for me would have been

Old me - Breakfast - 4 rounds of buttered toast with marmalade and maybe cereal with orange juice
New Me - Breakfast - Greek Yoghurt and berries, pluse a benecol drink and coffee
Old Me - Morning snack - Cheese, crisps or chocolate (or more toast)
New me - Almonds, 10 cal jelly
Old Me - Lunch - Cheese and salad cream sandwiches, crisps, chocolate, coke
New me- Lunch - Chicken with lots of salad
Old me - afternoon snack - chocolate/crisps etc
New me - afternoon snack - 2 cubes of 85% chocolate (or glass of red wine if weekend in the evening instead)
Old me - Dinner - Lasagna, garlic bread, small salad, followed by ice cream or trifle etc
New me - Dinner - Tandori Chicken with half a plate of green veg and small spoonfull of brown rice
if i am still hungry or have calories or carbs over I will check on the barcodes of items I can have, sometimes I have a slice of wholemeal bread and peanut butter,

I do eat a lot of nice meals, so breakfast could be porridge with berries, or an egg on wholemeal bread with lots of grilled tomatoes (even had a rasher of lean bacon on occassion)

Lunches - lots of home made soup, and have with additional veg or ryvita if I need to have something textured with it, I also have omelettes with salads.

Dinners - I have roast dinners still, I tested my spike before and after and can manage 2 roast potatoes and a yorkshire pudding with the meat and veg and still stay within calories and carbs.

I am still experimenting what keeps me on track and have had some disappointments along the way, like I cant eat bananas which I love and I am not sure I will ever be able to have lasagne or garlic bread again but if it keeps me healthy then I guess its a small price to pay.

The other things I have discovered that help are, hot baths (help to take my mind off food and also lower your sugar levels) walking my sons dogs, exercise for fun is important rather than just health. I do enjoy dancing too, even in my fifties 🙂

As a type 1 though, I dont think any food group is banned it just needs to be in moderation to help weight loss and to match the insulin you take.

Good luck, you will get there, I tend to think I am either getting fatter and fatter or smaller and smaller, I need to learn how to stay still when I get to the ideal weight, When the motivation has gone thats when self control can slip xx

 

[rachelshane]

Todays summary:

Average BG 10.0
Time in target 38%
2 hypos @ 17:30 and 19:00
Total daily dose 48.85 u
Basal 61%
Bolus 39%
Carbs 140g

Maintained weight at slimming world but
Feeing sluggish

Looking forward to a new day tomorrow.😉

 

[rebrascora]

Hi and welcome.

I hope you will find the inspiration tips and motivation you need here, as I have over the past 3 and a half years. The pandemic caused a lot of people difficulty in one way or another, either with high or low BG due to the virus or the vaccines or the mental toll from isolating which encouraged people to comfort eat. Anyway, I am sure you are not alone in wanting to turn things around.

We tend to refer to Time in Target as Time in Range which abbreviates rather more comfortably to TIR 🙄 just in case you find thatt easier to use or see TIR mentioned elsewhere on the forum.

Which insulins do you use?

Do you find the % split of insulins helpful at all and if so, for what. Personally I think you need whatever you need and obviously bolus will be dependent on your diet. I follow a low carb way of eating so my bolus insulin is always much less than my basal, so I am not sure what benefit there is in calculating or knowing the percentage split..... Happy to have that explained if I am missing some particular logic in it's relevance. I have heard some people say that their consultant wanted it to be nearer 50/50 but to me that is crazy as bodies don't care about numbers being even or odd or nicely uniform, you just need what you need. For me, getting my basal doses right is the essential key to good management and they need tweaking quite often to achieve that depending upon a variety of things but exercise is a key factor for me. After that it comes down to what you eat as to how much bolus insulin you need. Obviously if you want to lose weight then that might be a factor. You can certainly lose weight by cutting carbs which would likely involve reducing bolus insulin doses or by cutting calories.

Would you also like to post a snapshot of your daily Libre graph to see if we can spot any issues which might have simple fixes to improve your TIR. Things like prebolusing earlier at breakfast can have quite a big impact if you tend to spike quite high in the morning and or perhaps adjusting when you take your basal insulin, depending upon which one you use.

Anyway, just really wanted to say "Hello" and so pleased that you have found the forum because there is a goldmine of experience and support here to dig into. I appreciate that you have started this thread off as a sort of blog but I am assuming you are open to discussion and input from others, rather than it just being a diary of your progress.

 

[SB2015]

Welcome to the forum @rachelshane . I am sorry that you are finding things so hard at present, but I am glad That you have found us. There is loads of experience to tap into.

If your glucose levels are a bit higher that can often make you feel more tired and less motivated. You have clearly been successful in managing your Diabetes before in that you have had two successful pregnancies, so you know that you can do this, but you already have a busy life with two small children so it is no doubt more difficult to find time to look after yourself and then it can be a vicious circle.

I went through burn out as I set myself unrealistic targets, which I inevitably failed to meet, so I just kept trying harder!! I eventually, with a lot of encouragement from people on here, asked for help. I documented my progress on here

Successful strategies so far in dealing with depression and Diabetes

I found it tempting to hide away over the last couple of months. After 9 years of Diabetes I finally hit a wall as HbA1c reached the mid 40s and so no longer improved, spinal stenosis gave me numb feet over night, an MRI showing lesions on the brain and I watched my Mum die of Dementia...

forum.diabetes.org.uk

I was in a very different position as I was a lot older at diagnosis, but if anything there helps that is great. If you have any questions just ask.

 

[rachelshane]

Hi,
So here are some screengrabs from libreview.
I never know where to begin when I'm studying myself.

I do different exercise from day to day, eat differently, work differently, so don't have a set pattern.
But it's just always skewiff!!

I know carb free meals are a start, but when ever I plan to do a basal check, I have a hypo hours before, and have to skip that day for another!

Any advice, is very much appreciated.

Thanks again.

 

[rebrascora]

Which basal insulin do you use and when do you take it?

It looks like you have a tendency to go high about 4pm. Do you think this relates to lunch (ie ratio needs to be increased for lunch) or could it be basal insulin running low/out at that time which is why the question of which basal and when you take it is relevant, or perhaps you are more sedentary at that time of day although I very much doubt it with two children! 🙄

 

[helli]

Welcome @rachelshane

I think the most important thing to me is to know that I am not alone and there are other people who I can talk to who have been where I am.

Unfortunately, that 10 years to a cure has almost become a diabetes meme. I wish it was only 10 years away but having been diagnosed the same year as you, I have given up waiting and focused on doing what I can with the tools available today.

My attitude has always been to work out how to live my life with diabetes and, unlike those with type 2 such as @Jenny65 , I have avoided changing my diet. I know this is not always the easiest approach but I am stubborn (and I like my food).

For me the first thing has been to get my basal right. Any adjustments (bolus) on top of an unstable foundation (basal) could be trying to deal with the foundation issues as well as the food I have just eaten.
The good news is that this is much much easier with Libre - no longer do we have to prick out finger every hour: we have graphs to look at.
What insulins do you take?
I am not a doctor and have no medical training (have to get that caveat out of the way) but it look as if your levels are relatively flat except for that big spike. This suggests to me that your basal is not far out from keeping you stable but you may need a different basal dose in the night and day. Some people have benefited from Levemir's shorter life so they can adjust for day and night with two jabs.

Once you are happy with the basal, you can look at the bolus.
Unfortunately, there are multiple dimensions to this:
- insulin to carb ratio
- pre-bolus time

If you are spiking high but coming back down, the pre-bolus time is typically the thing to consider. If you are finding your bolus is taking too long, there are faster acting insulins around like Fiasp which can shorten this ... but, in my experience, only if your starting BG is lower.


Sorry, I have waffled when I really meant to say, Welcome, you are not alone.

 

[Bruce Stephens]

Which basal insulin do you use and when do you take it?

It looks like you have a tendency to go high about 4pm. Do you think this relates to lunch (ie ratio needs to be increased for lunch) or could it be basal insulin running low/out at that time which is why the question of which basal and when you take it is relevant, or perhaps you are more sedentary at that time of day although I very much doubt it with two children! 🙄

I'd suspect the basal dose is a bit too low generally. The graph shows someone that's mostly too high, with very little below 3.9 (which is good, of course), so I'd have thought increasing the basal dose(s) a bit would be a good first step.

 

[rebrascora]

My attitude has always been to work out how to live my life with diabetes and, unlike those with type 2 such as @Jenny65 , I have avoided changing my diet. I know this is not always the easiest approach but I am stubborn (and I like my food).

I agree that Type 1s can have a normal diet and eat what they like and adjust their insulin doses to suit but in this case @rachelshane has specifically mentioned wanting to lose weight so some dietary changes may be necessary at least in the short term. Personally I find my dietary changes have been enjoyable and I feel healthier for them so I don't want to eat "normally" anymore.

 

[rachelshane]

Hi.
Thanks everyone. I have a medtronic 640g. I only use novorapid. I have freestyle libre 1.
I think I have reached a point, that I need to turnaround and run away from, that I'm scared of having hypos - or that I do whatever I can to avoid them, as they are inconvenient, annoying, I don't like how they make me feel. Whether I do this consciously or subconsciously anymore, I think I do.

Therefore, when I calorie restrict, diet, or exercise, the balance tips, and I get in a vicious circle of hypos, and hypers, and spiking, which takes days sometimes to level out.

Today, I have tried my absolute hardest: I planned last night what I would eat most of today:

Breakfast/ mid-morning Banana with carrot sticks
Grazing/snacking Blueberries/ grapes. Hi fi cereal bar
Lunch Light happy cow: 1 triangle, ryvita fruit and seed x2, kvarg white chocolate yoghurt, strawberries

However, come 4-5pm, when I leave work, pick kids up from school, I go wild, eat whatever I can , and my blood sugars have a few hours fending for themselves. Other days its a cycle home from work over 4 miles. But usually then about 9 oclock, when the madness is over, I sit down and reflect, and recover from the day. This is definitely my sticking point I think. From 3pm - 8pm. What happens here, decides if the nighttime is going to be out of range, or if mad corrections are needed.

I love the idea of pre-bolusing, but have a habit of being distracted, after I have bolused, then been dragged away or distracted to do something else, and then the hypo and spike afterwards, are something I'm far too familiar with.

I think the more I share, the more I can narrow down my options, but today, the food diary, and not being afraid to administer just 1 unit at a time if needed, is something I'm going to try to overcome.

Does this all sound quite a reasonable attempt?

 

[helli]

I love the idea of pre-bolusing, but have a habit of being distracted, after I have bolused, then been dragged away or distracted to do something else, and then the hypo and spike afterwards, are something I'm far too familiar with.

This sounds very familiar.
I realised with NovoRapid in my pump that I needed to prebolus about 40 minute before eating. Stupidly, I realised this gave me time to pop to the supermarket, walking up and down a steep hill. Sometimes it was fine Sometimes, my shop took longer, sometimes I met someone on the way, sometimes, I was quicker than I expected.
This was why I asked to try out Fiasp. I no longer need to pre-bolus (unless my levels are high when Fiasp s-l-o-w-s down to NovoSluggish speeds) and my life is easier again.

 

[rachelshane]

Did your DSN recommend Fiasp? I checked online, and the costs of Fiasp and Novorapid are the same. However my local hospital doesn't particularly like Fiasp - I dont know that many T1D's, but I know that we are all on novorapid. So not sure really how to proceed.
My pump license/rental expires next year, and I will have to decide between compatible closed loops with Dexcom (T slim I think) or Guardian (medtronic 720g). But I want to get it all settled now, or sooner rather than later.

 

[helli]

Did your DSN recommend Fiasp?

No it was something I requested.
My DSN is happy for me to trial things like a new pump that no one else uses or a different type of insulin like Fiasp.

 

[rebrascora]

For me, prebolus time with NR was 75mins for breakfast and 20-30mins at other times of the day and I definitely got distracted during that time and ended up hypo too frequently. I too use Fiasp now and whilst I still have to prebolus I have developed routines to incorporate that and I am much better at the timing. So at breakfast time, I inject before I get out of bed, then I have a routine of toilet, washing, dressing and making coffee and breakfast before I eat. I am useless with maintaining routine but I have persevered with this and it has definitely paid off, even if I struggle with maintaining any routine later in the day.

I would say that changing from NR to Fiasp was not straightforward for me as it can be "quirky". It took me 2 separate 3 month trials before I got the hang of it, but it was worth persevering. I believe you are entitled to request a particular insulin if you have good reason to believe it will help you manage your diabetes better. My team were happy for me to trial it for 3 months, go back to NR and then trial it again a year later all at my request, which then turned into a long term prescription of Fiasp. It isn't perfect but it works better for me than NR but I have to be more assertive with it. I can average about 90% TIR with Fiasp and Levemir on MDI along with my low carb higher fat way of eating with low variability which really helps me in preventing cravings.

 

[everydayupsanddowns]

Great to see you are open to experimentation and making changes to try to improve things - and great that you are on an insulin pump so that things like your basal can be gradually and incrementally tweaked and improved as your experiments continue.

Don‘t be discouraged by any setbacks. we can need to be pretty resilient with this diabetes lark - and it can take a while to get a balance between improved blood glucose juggling and still having a life.

Interesting that that late afternoon period where your AGP snapshot showed a bit of a bump you have also noted is a time with added pressures of time and a bit more food-randomness.

Would be interesting to see if some tweaks to choices and options there might help to level things put a little?

I tried Fiasp, but had a bit of a reaction to it after a few weeks (which seems to happen in some people) and I ended up with sore sites and erratic absorption, plus only novo-notvery-rapid speed - so decided to switch back.

NR is a bit of a slug at times, but I have found ways to make it work.

 

[rachelshane]

OK, so I feel quite a bit more positive after everyone's advice and input this week. THANK YOU AGAIN!

I'm going to try a staged attempt- rather than changing everything all at once!

- Firstly- I'm going to do close carb counting, and try to reduce the amounts consumed per meal. Also to try to eat more balanced diet - previously my main foods were: fruit, yoghurt and sweets for hypo treatment, or prevention. I'm not a keen meat person, but will try to have more salad and veggie snacks rather than fruit.

- Secondly, I'm highly suspicious of my afternoon rise, and whether it is basal or bolus related. Unfortunately, my plans this weekend are: Saturday - play Netball 10am-1130am. I will be hoping not to hypo during this, nor overload beforehand, during or after with copious sugary gels, so that I don't go too high or too low. I went back to Netball after >20 years. I started training once a week last september, but this Saturday it will be my first game >> fortunately, there is another lady also returning, so we may split the game, so I wont have a full 1 hour or intense activity.

- Thirdly Sunday may be a good day to closely monitor my mid-day to early evening rise. I will plan for low-carbs throughout the day, and update on Monday. My Sunday plans are to sit and watch my daughter play netball, so should be a lot more relaxing for me, than my own game the day before.


Fingers crossed for me, and I will update Monday, and seek further advice!!!