Started insulin this week

[SareN]

Hi Everyone

I was confirmed positive for antibodies last Friday with a level of 20. I started on insulin on Monday (basal of 9 units levemir and bolus is novo rapid with ratio 1 unit to 12 grams carbs) . After trying to control it with low carb whilst in lockdown, it is kind of a relief to feel like i'm at least on the right treatment plan now. Low carb was a challenge for me because I'm very lean and do a lot of exercise.
So far I'm fine with the injections and carb counting seems OK. Basal seems to be keeping me stable overnight. Fasting blood this morning was 5.6.
I'm finding the post meal times challenging though. For certain foods I seem to really spike wheras others I don't really get a spike at all but drop quite a bit. I have the libre so can keep a close eye on it and manage to stop it going too low with a biscuit (I have my glucose tablets close just on case). However its so frustrating as I may get a spike a bit later. I know I'm only 4 days in so perhaps expecting too much too soon but I really want to try and get this right. I presume it is to do with the glycemic index of the carbs and whether I have much fat or protein with the meal. I tried asking the diabetes nurse but she basically said not to worry at the moment and stop trying to run before I can walk. Could anyone explain it to me? Is this something that you start to see patterns with and soon get the hang of? Just as I feel like i understand something, my body does something different.

On a positive note, I've tried some of my exercise classes and I have so much more energy and blood sugar seems pretty stable during class. I just make sure I eat soon after as blood sugar does come down quite quickly after.

Ordered miao miao today so hoping this will ease some of the anxiety and stop me scanning my libre all the time.

I am determined to get the hang of this all and be able to get on with life again.

Sarah xx

 

[JMoli]

Hi, I’m interested in the replies too as I’m also having problems with bolus with later highs and currently can only handle potatoes easily! I’ve been on novorapid for a few months now and can’t handle low glycemic meals or pasta/rice/noodles as go low/hypo then high 4-6 hours later. I think we may have to split bolus and/or bolus with or after the meal but my nurse said it’s all experimental and different for everyone. I can’t do corrections yet and had two disastrous pasta experiments under my belt so sticking to potatoes every night. Boiled or mashed is my meal choice, it’s very exciting!
That’s great that you have more energy and are able to exercise etc. Your basal fasting seems brilliant and the Miao Miao will be great for anxiety, especially during the night. I have a ‘Bubble’ which is similar and can check my blood sugar there so can pretend to my nurse that I’m not checking/scanning (my Libre) obsessively haha.
Has your nurse discussed correction doses or split bolus? x

 

[JMoli]

Oh, and if you can - ask to speak with a dietician. I have been referred to one now (after months of feeling so lost) and spoke with her last week. Now I keep a food diary and she checks my Libre readings and has given me a rough carb ratio 1:35 and will phone every week to discuss if I need to make changes to this ratio at different times of the day (currently worst readings are at lunchtime) and it’s been SO helpful, I wish I had asked so many questions like yours months ago! Saves the desperate stab in the dark guessing game with food x

 

[SareN]

Thanks for your response, its so good to chat to someone going through this too.
She did explain corrections but because it seems so erratic at the moment I'm only correcting if I go very high and stay high for a while, e.g. 12.
She didn't discuss split bolus but I have read a few things about it on here.
I feel like for high glycemic index carbs I perhaps need to inject earlier and wait before eating to hopefully stop the spikes going so high and for meals containing protein or fat or slow release carbs, i perhaps do need to split the bolus. However I was made to promise that I wouldn't deviate from the basic "injecting for carb content of meals' for the next week so that they can see some patterns. I also got told off for checking blood sugar too often. Its hard not too if you see bloods shooting up or dropping like a stone.
I have been referred to a nutritionist but was told she is super busy so it could be a while. I imagine it will be a great help though to have someone give that much support.

 

[Marie 2]

At the beginning you are in the honeymoon phase which means you still probably make some insulin. But it can be very erratic. So things will change as you go along. Plus when you first start they try not to hit you with too much because it can be overwhelming for some.

I have different timing for my "normal meals", sandwiches, salads with veggies, bowl of veggies and tofu, versus say pasta primavera with oil. Each of us can vary, but fat delays absorption, very high fat can delay it more. Sometimes high fat meals require a bolus after you eat. But I find timing of a partial prebolus to be critical to maintain a more even Bg level.

 

[Jaylee]

Hi Everyone

I was confirmed positive for antibodies last Friday with a level of 20. I started on insulin on Monday (basal of 9 units levemir and bolus is novo rapid with ratio 1 unit to 12 grams carbs) . After trying to control it with low carb whilst in lockdown, it is kind of a relief to feel like i'm at least on the right treatment plan now. Low carb was a challenge for me because I'm very lean and do a lot of exercise.
So far I'm fine with the injections and carb counting seems OK. Basal seems to be keeping me stable overnight. Fasting blood this morning was 5.6.
I'm finding the post meal times challenging though. For certain foods I seem to really spike wheras others I don't really get a spike at all but drop quite a bit. I have the libre so can keep a close eye on it and manage to stop it going too low with a biscuit (I have my glucose tablets close just on case). However its so frustrating as I may get a spike a bit later. I know I'm only 4 days in so perhaps expecting too much too soon but I really want to try and get this right. I presume it is to do with the glycemic index of the carbs and whether I have much fat or protein with the meal. I tried asking the diabetes nurse but she basically said not to worry at the moment and stop trying to run before I can walk. Could anyone explain it to me? Is this something that you start to see patterns with and soon get the hang of? Just as I feel like i understand something, my body does something different.

On a positive note, I've tried some of my exercise classes and I have so much more energy and blood sugar seems pretty stable during class. I just make sure I eat soon after as blood sugar does come down quite quickly after.

Ordered miao miao today so hoping this will ease some of the anxiety and stop me scanning my libre all the time.

I am determined to get the hang of this all and be able to get on with life again.

Sarah xx

Hi,

You may find the CGM set up with the Miaomiao a little easier?
To put it quite simply for me. There is no more hunting for the Libre in the winter months under layers of clothing playing "Where's Wally?"
I use an aftermarket arm band to hold the MM in place. The one that comes with it is OK but it can slip with increased activity & the aforementioned layers of clothing catching on it.

The Actual MM. (I have the MK2.) Is a great bit of kit..

 

[ArtemisBow]

In time you will probably be sent on a DAFNE course which will help with understanding things like split bolus, pre bolus etc which may help with these issues. I say “may” because I am 6 years in and still regularly get it wrong. At the moment your team just want to gather data, so I understand why they want you to stick to a basic plan. I understand it’s frustrating, because after diagnosis you just want to get things under control as soon as possible, but you have to work with your team to learn how YOUR diabetes works. Everyone’s is different so they are learning too.

Maybe consider the initial period as a learning session - so test regularly, note what happens without trying to fix it (unless dangerous) and just capture the data. Are you keeping a food diary? You might find mySugr helpful to note what you eat, then in the future when you start adjusting things you can search for the last time you ate a particular thing.

 

[SareN]

Thanks for the comments, I know there is a lot to learn and it will probably just take me some time. I am keen to get it in range though ASAP as we want to try again for a baby and i don't feel time is on my side (I'm 36). My team are aware of this. Ridiculously low carb pre insulin got my HBA1C down from 11.7% to 6.8% and I don't want to undo all my hard work. The diabetes nurse i saw on Monday was keen for me to eat lots of carbs but we compromised on about 150g a day as a starting point. I must admit I do feel much better for having the carbs.

I would love to attend the Dafne course but I think everything is delayed because of lockdown so I dont expect to be able to do this any time soon.

In the meantime are there any good books out there that I could get to help my understanding?

I tried taking my bolus 15mins before eating today and I went from 7.5 pre meal on libre up to 11.3 at highest and then was at 9.8 two hours later. This is better than yesterday but still takes me out of my target range of trying to stay below 9.

Mornings seem a challenge as my readings go up between taking my fasting reading and taking my pre breakfast reading. Today was 6.1 fasting but 7.5 by the time I had breakfast so I think they are on an upwards trend anyway regardless of food.

I'm sure ill get a clearer picture of patterns as the days go on.

 

[ArtemisBow]

I would highly recommend “Think like a pancreas” by Gary Scheiner. In fact if you want, I could send you my copy? I don’t need to refer to it so much nowadays.

 

[SareN]

That's really kind of you but are you sure? I'm happy to buy it if you still use your copy.

 

[ArtemisBow]

When I wrote the above I had to think whether I still even had it, it’s not been off the bookshelf in years. Incredibly useful in the early days, but I just don’t need it now so it might as well go on to someone who does - if you’d like it PM me your address. If you’d prefer to buy a new one given the current COVID situation though I won’t be offended!

 

[ert]

I was lucky enough to complete a DAFNE course two weeks into using insulin last year. Ask your specialist/GP to refer you to the next available course. I think the most important thing I learnt on the course is that injected insulin isn't like the body's own insulin, and acts over a four-hour window, and to ignore the high blood sugars over this time (don't test).

We were recommended testing by finger pricking: waking, bedtime and before each meal. 5 times a day. If our carbohydrate ratio was correct for the meal, the blood sugars will come down to the same pre-meal level as the last one. Correction doses, if any were needed, were to added on to the next pre-meal's fast-acting dose.

The only way to not spike your blood sugars is to go back to eating low carbohydrate, which is what I do following Dr Bernstein's Diabetes Solution. DAFNE doesn't recommend this. You managed your blood sugars the same way as I did before starting insulin, with low carbohydrate and extreme exercise. I just chose to stay with this lifestyle choice on insulin.

 

[Marie 2]

Please keep in mind what you need to do can be different. We all can vary. Plus being in the honeymoon phase it can really vary. It becomes old hat, but is a steep learning curve at the beginning.

So first I would say try to get a Libre so you can tell what is actually going on more. If you can't qualify, you might consider self funding if you can afford too. People have described a meter to a snapshot and a CGM to a movie and I think that is a really good description. A CGM is a game changer!

But my biggest control seems to be a matter of timing. But because I have a CGM I can also tell how I am responding. Before I had anything other than a meter to help though, partial prebolusing was the key. It puts some insulin in your system so when you eat you have insulin ready to go. I always have eaten what I want, (as long as it’s vegan for me) and partial prebolusing for me is the trick.

In general I prebolus half a half hour before I eat and the other half after I eat. That way I can also adjust my bolus to what I actually eat. For some half a prebolus could be too much, I have a friend that is more insulin sensitive , she eats high carbs, low fats and she takes a third of a prebolus a half hour before otherwise she drops too much. Plus it depends on what foods you are eating. Do not forget to eat if you prebolus. Timing can be a huge key and you have to learn what works for you.

That is why there is a lot to learn at the beginning. There are no clear cut rules for everyone. Higher fat meals require some insulin later. So for something with higher fat for me I might take a prebolus, a bolus when I eat and a bolus a half hour after I eat. Very high fat and maybe no prebolus. You learn different foods and how you react.

Unfortunately I realize there is a time factor involved, but our bodies don't always cooperate and your levels will fluctuate at the beginning. So you have to learn what affects you how, and that can change as time goes on.

@artemis suggestion of the book Think Like a Pancreas is a wonderful idea, he is well respected in our community.

 

[SareN]

Thanks for the responses, I have got a libre, and a miao miao on the way. I self funded but the nurse said at my appointment that I will get NHS funding for the sensors in the next few months.
You are right the libre is amazing to be able to see what is actually happening the whole time. It also relieves a lot of anxiety as I can see the direction my blood sugar is going and have that warning if I'm heading for a hypo.
Yesterday I tried pre bolusing by 15 mins and it meant I didn't spike so high so timing of the insulin does seem to be a factor. Like you say I think its a bit of trial and error. I'm eating about 150/170 grams of carbs a day which suits me well. The nurse wants me to eat more but I'm happy with that figure for the moment whilst I get comfortable with carb counting and learning what my insulin to carb ratio is.
I know very low carb would stop the spikes altogether but i was really struggling with all the exercise I do so I know for me some carbs are needed.
I seem to find mornings i need more insulin with food as i seem to be rising from when I get out of bed and also before bedtime I am generally rising but then my long lasting insulin which I take at 9pm seems to kick in over night and I am pretty flat all night sat between 4 and 5 and wake up with a lovely fasting blood sugar of 4/5 on the libre and 5/6 on my meter.
Every day I learn something new and I'm trying to reflect on each day in the evening and pick out one thing that I have achieved that day so that I keep myself motivated and don't let things get on top of me.

Thanks again for all the responses, I dont know anyone else with type 1 or lada so to be able to talk to people going through this or a few years ahead of me is such a blessing.

 

[Dark Horse]

There is a website which might have useful information:- https://www.dafneonline.co.uk/

 

[SareN]

Thank you, ill take a look.

 

[Marie 2]

You can eat the amount of carbs you choose to eat, you just have to dose appropriately for it. You don't have to have big spikes with good timing. I also do what they call sugar surfing a lot. Experience does help. You get used to knowing more what your body responds to etc of course it throws curve balls at you all the time too.

Since you have a Libre you might be interested in the book Sugar Surfing by Stephen Ponder, he also has a lot of good information on his website.

https://www.sugarsurfing.com/stephenpondermd

Just keep in mind dosing could keep changing on you right now. And you might try to get a pump too. A pump lets you do smaller dose corrections or bolus doses easier. I think they can be hard to get or a waiting period, but if you meet certain criteria I guess you can qualify.

 

[SareN]

Thanks, I've ordered that book. It sounds really good.

 

[JMK1954]

I was diagnosed in 1964 as a 10 year old and was put on a diet of 170g of carbs per day. I don't understand why nurses always want us to eat more carbs than that. Very occasionally, I have eaten more than this and taken more insulin to compensate. I am female and fractionally under 5 ft 1 inch, so that may be part of the explanation of why I find this enough for me. I simply don't need more. If I eat more carbs regularly, I put on weight - and of course the nurses don't like that either !

By the sound of it, you're doing really well. Don't let them push you to eat more or less than you want. It's your decision.

 

[SareN]

I know what you mean about the carb thing! Don't get me wrong, the diabetes nurse was great and after zero support for months, I'm very grateful for the time she gave me. However they do seem to have a very set way of thinking and nothing can deviate from that.
Nothing bad is going to happen to me if I don't quite manage my 150g of carbs but to hear them talk, I will waste away.

If i had followed their advice entirely I would have had huge spikes and massive lows. As they merely said " count carbs and take the full dose as you eat". I am very quickly learning that the timing of insulin is just as important as the dose and that this varies very much depending on the meal and getting it right can prevent massive spikes or sudden crashes.

Luckily I have the libre and have now set that up with miao miao to my phone and fitbit so I can use a bit of trial and error to see what works for me and take action if I have got it wrong.

I think every day is a new learning experience at the moment but I do feel like i am making progress.

My biggest thing at the moment is fear of hypos. I haven't got the confidence yet that taking fast acting glucose will resolve it quick enough so the minute i see I'm heading for 4, I panic to treat it and spend the next 10/15 minutes as a nervous wreck worrying that im going to pass out and be rushed to hospital.
The lowest I've seen it go so far was 3.4 (blood glucose, not libre), that was after treating it at 3.8 and I was an emotional wreck waiting for glucose to take effect. If anyone has any calming/reassuring words re hypos, that would be great. I'm sure its something that in time I will relax more about....still very early days.