Am I doing this right?

MS81

Newbie
Messages
4
Type of diabetes
LADA
Treatment type
Insulin
Hi all. This is my first post...

I am 36 years old lady and was diagnosed with Lada in Dec last year. Within two weeks I had been put on Lantus and then Novorapid but with very low dosages. The consultant told me I would have to be referred to a lada/type specialist and would hear from them soon. But now it's the end of March and I don't have my next appointment until mid may.

My main concern is 'have I been doing it right?' I was never told how to increase my insulin if my BG are too high or how to adjust when I eat carbs. My BG is still all over the place even though I'm on a low carb low sugar way of eating. My dosages are now around 10mmol of novorapid and 18mmol of lantus. But I don't even know if that's right or too much.

I term of stats/ measurements and numbers, the consultant didn't give me any.

I have now started gaining some of the 18kgs I lost before I got diagnosed, my period gets later and later every month and I constantly feel out of sorts.

Most of what I have been doing is picked up is from here.

Does anyone have any advice that could help??

Thank you
 

azure

Expert
Messages
9,780
Type of diabetes
Type 1
Treatment type
Pump
Welcome @MS81 :)

I don't understand why you need to be referred to a LADA specialist if you're seeing a consultant already. Presumably your consultant is a Diabetes Specialist? LADA is a form of Type 1.

It sounds like you have 'normal' Type 1 anyway as you started on insulin straightaway. My consultant only classifies someone as LADA if they're a fair bit older than you and it's come on very gradually. I think some people mistakenly use 'LADA' to mean anyone over the age of 21.

You do need to see a specialist. If I was you, I'd go back to your GP and push, or phone your hospital and ask to speak to someone in the diabetes centre there.
 

azure

Expert
Messages
9,780
Type of diabetes
Type 1
Treatment type
Pump
It's not right you've been put on insulin and basically left to get on with it without any guidance at all. Even if there's a bit of a wait to see a consultant, I would hope a DSN (diabetes specialist nurse) would be able to speak to you and offer some help and support.

I recommend the book Think Like A Pancreas. It's easy to read but has a lot of info about Type 1/LADA and will stand you in good stead.

You should also get some help with carb counting and adjusting your insulin to match the carbs you're about to eat. That's crucial for good control. You will also learn what your 'correction factor' is, so will be able to use small extra doses of insulin to correct high sugars :)

Tagging @Diakat and @DaftThoughts for you as a start, but do have a read around the forum and ask any questions you want. It's often quieter here at the weekend, but you will get some answers :)

When you say your sugars are all over the place, what kind of numbers are you getting?
 

MS81

Newbie
Messages
4
Type of diabetes
LADA
Treatment type
Insulin
Welcome @MS81 :)

I don't understand why you need to be referred to a LADA specialist if you're seeing a consultant already. Presumably your consultant is a Diabetes Specialist? LADA is a form of Type 1.

It sounds like you have 'normal' Type 1 anyway as you started on insulin straightaway. My consultant only classifies someone as LADA if they're a fair bit older than you and it's come on very gradually. I think some people mistakenly use 'LADA' to mean anyone over the age of 21.

You do need to see a specialist. If I was you, I'd go back to your GP and push, or phone your hospital and ask to speak to someone in the diabetes centre there.

Thank you for you comments. My current consultant who diagnosed me only treats type2 (that's what they thought I had for 4 years, though the only symptom I had was high GS) I think I will chase the appointment sooner.
 

MS81

Newbie
Messages
4
Type of diabetes
LADA
Treatment type
Insulin
It's not right you've been put on insulin and basically left to get on with it without any guidance at all. Even if there's a bit of a wait to see a consultant, I would hope a DSN (diabetes specialist nurse) would be able to speak to you and offer some help and support.

I recommend the book Think Like A Pancreas. It's easy to read but has a lot of info about Type 1/LADA and will stand you in good stead.

You should also get some help with carb counting and adjusting your insulin to match the carbs you're about to eat. That's crucial for good control. You will also learn what your 'correction factor' is, so will be able to use small extra doses of insulin to correct high sugars :)

Tagging @Diakat and @DaftThoughts for you as a start, but do have a read around the forum and ask any questions you want. It's often quieter here at the weekend, but you will get some answers :)

When you say your sugars are all over the place, what kind of numbers are you getting?

Thank you again, I'll try the book. I do honest I never knew what a correction factor was until 2 weeks ago. My BS can be between 6.4 to 10.6 before meals and between 9.5 and 15.9 after meals and with 10-14mmol of novorapid. I can eat the same thing two days in a row and my BS are completely different. It's so confusing.
 

azure

Expert
Messages
9,780
Type of diabetes
Type 1
Treatment type
Pump
Thank you again, I'll try the book. I do honest I never knew what a correction factor was until 2 weeks ago. My BS can be between 6.4 to 10.6 before meals and between 9.5 and 15.9 after meals and with 10-14mmol of novorapid. I can eat the same thing two days in a row and my BS are completely different. It's so confusing.

Ok :)

As you probably realise, those sugars are a bit higher than ideal, but that's not your fault - for two reasons. Firstly, of course, you've not been given the support you need, but secondly you're probably going through what's called the honeymoon period, where your pancreas can still make tiny amounts of insulin occasionally. These random amounts will make your blood sugar a bit erratic anyway.

When you say you eat the same thing two days in a row, do you mean that literally - ie exactly the same weight of pasta, potatoes or whatever? Even if you can't carb count and adjust insulin yet, you can keep records of what (usually) works for your blood sugar and then re-eat those 'safe' meals eg if you find 130g pasta works with a sauce, then next time have that same amount of pasta and there should be less variability in your blood sugar afterwards. You can build up a library of good meals that way while you're waiting for help.
 

MS81

Newbie
Messages
4
Type of diabetes
LADA
Treatment type
Insulin
Ok :)

As you probably realise, those sugars are a bit higher than ideal, but that's not your fault - for two reasons. Firstly, of course, you've not been given the support you need, but secondly you're probably going through what's called the honeymoon period, where your pancreas can still make tiny amounts of insulin occasionally. These random amounts will make your blood sugar a bit erratic anyway.

When you say you eat the same thing two days in a row, do you mean that literally - ie exactly the same weight of pasta, potatoes or whatever? Even if you can't carb count and adjust insulin yet, you can keep records of what (usually) works for your blood sugar and then re-eat those 'safe' meals eg if you find 130g pasta works with a sauce, then next time have that same amount of pasta and there should be less variability in your blood sugar afterwards. You can build up a library of good meals that way while you're waiting for help.

And this is where I get confused. If my BS gets lower than 7 I feel awful... I get dizzy, spaced out, clumsy which I think is a hypo but when my BS is high I feel fine but that could be my body has been used to it.

In terms of eating the same think... I work away a lot for work so I stay I hotels. I can have the same omelette with onions two mornings in a row and one day I would be 8.9mmol and the next it would be 10.8mmol.

I have never got my BS lower than 6 even before fasting without feeling like I'm about to pass out. In the few month of taking insulin I was constantly hungry, I never felt that hungry in my life but now that's settled.
 

azure

Expert
Messages
9,780
Type of diabetes
Type 1
Treatment type
Pump
Sorry - in my sympathetic anger on your behalf, I forgot to say that feeling out of sorts isn't surprising with sugars like you've described. Once you're able to get better control, you should feel more yourself :)

Your period could be being messed up because of the high sugars, or it could be the stress of diagnosis, or completely unrelated, of course.
 

db89

Well-Known Member
Messages
1,134
Type of diabetes
Type 1
Treatment type
Insulin
And this is where I get confused. If my BS gets lower than 7 I feel awful... I get dizzy, spaced out, clumsy which I think is a hypo but when my BS is high I feel fine but that could be my body has been used to it.

In terms of eating the same think... I work away a lot for work so I stay I hotels. I can have the same omelette with onions two mornings in a row and one day I would be 8.9mmol and the next it would be 10.8mmol.

I have never got my BS lower than 6 even before fasting without feeling like I'm about to pass out. In the few month of taking insulin I was constantly hungry, I never felt that hungry in my life but now that's settled.

That sounds like false hypos when your BG is dropping below 7. I had those for a while after diagnosis but after getting into a better range and managing to stay there they disappeared after a while.

The hunger when first going on to insulin is fairly normal; the body is trying to use the insulin it hasn't had to get energy back into the cells. This also should calm down after things settle and you get your doses right.

Do you take your Novorapid before a meal and have you tried experimenting with how far in advance to try and stop a rise? I was never told about this, learned it from this forum and most of the time it has helped slow post meal rises considerably.
 

Robkww

Well-Known Member
Messages
262
How many people are in the same position @MS81 finds herself in but don't find the forum or have any other means of support - ridiculous how people with potentially serious conditions are left to their own devices.
 
  • Like
Reactions: MS81

azure

Expert
Messages
9,780
Type of diabetes
Type 1
Treatment type
Pump
And this is where I get confused. If my BS gets lower than 7 I feel awful... I get dizzy, spaced out, clumsy which I think is a hypo but when my BS is high I feel fine but that could be my body has been used to it.

In terms of eating the same think... I work away a lot for work so I stay I hotels. I can have the same omelette with onions two mornings in a row and one day I would be 8.9mmol and the next it would be 10.8mmol.

I have never got my BS lower than 6 even before fasting without feeling like I'm about to pass out. In the few month of taking insulin I was constantly hungry, I never felt that hungry in my life but now that's settled.

That's because your body has become unnaturally used to high blood sugar. What you feel is called a false hypo and it's caused by having high sugars for a long time. Once your sugars are controlled, that will resolve and you'll get normal hypo signs at the correct level.

I wouldn't worry about the difference between 8.9 and 10.8. They're both a little high but you'll never get exactly the same sugars. We're looking for around the same, not spot on :)

I'm reluctant to advise a basal test if you don't have a DSN to help you, but it would be a good idea when you do. It's very possible your doses need adjusting.

Please do push hard to get the help you need. A DSN should be able to talk to you much sooner than a consultant. Don't be afraid to phone them. They're there to help :)
 
  • Like
Reactions: MS81

catapillar

Well-Known Member
Messages
3,390
Type of diabetes
Type 1
Treatment type
Insulin
And this is where I get confused. If my BS gets lower than 7 I feel awful... I get dizzy, spaced out, clumsy which I think is a hypo but when my BS is high I feel fine but that could be my body has been used to it.

That's a false hypo. You're body has been used to running high so it thinks normal blood sugars (lower than 7 is perfectly normal and not hypo) are hypo. You need to let your body get use to these normal numbers and adjust.

The targets for type 1s are 5-7 fasting, 4-7 pre meal and 5-9 90 minutes after eating.
 

Scott-C

Well-Known Member
Messages
2,474
Type of diabetes
Type 1
Ask your doc to put you on a DAFNE course, where you'll sit down for a week with a few other diabetics, a dietician and a DSN, and they'll talk you through the whole carb counting business. There's usually a long waiting list, though, so @catapillar 's bertie suggestion is a good starter for ten.

We can't give dosing advice here, but DAFNE guidance says as a general rule 10 grams of carbs will raise you by 2 to 3 on your meter and 1 unit will lower you by about 2 to 3. They'll normally say try 1 unit for every 10 grams you eat, works for a lot of people, but not all, I tend to need about 1.5 for each 10g, others will be more, others less, so it's a case of experimenting.

Next time your levels are fairly stable, try eating 10 grams of carbs without any insulin, wait for an hour and see how much you rise by, will likely be between 2 and 3. Likewise, try 1 unit without any food, and see how much you drop by (don't try this if you're already too low). It'll give you a rough idea of how much insulin is needed to counteract food. In an ideal world, if you were eating 50 grams, it would be 5 units, but in reality, it might be more or it might be less, and you won't really know until you figure out how you generally react to 10g and 1u.

Remember that it's not the total food weight, just the carb content. 100g total weight might only contain 10, 20, 30, 40 g of carbs depending on the food, so look at the labels on the back of packets.

If it was just a case of balancing carbs and insulin, it would be really easy, but there's a lot of background stuff going on which can throw things out. Even the number of times you chew food can affect it: chew a lot, it'll be broken down quicker and end up as glucose quicker, chew less, it'll take longer, so you could end up with food still breaking down after insulin has reached it's peak.

Exercise is a major thing. Generally, the more exercise, less insulin. So if you're planning on taking a four mile walk after lunch, you might want to think about taking less lunch insulin.

Your liver will release and also take back glucose with a mind of it's own, so if you get different results with the same food/dose two days running, you've not neccesarily got it wrong. It could just be the liver or the hundred and one other random factors throwing a spanner in the works. A lot of people cut themselves up about what seem like mistakes when the reality is that there is random stuff going on.

Testing reactions ain't that easy with strips because they're just snapshots. Have a look at the Freestyle Libre, which measures continuously and shows a graph of where you've been and predicts where you might be going - a bodily GPS! I've been T1 for almost 30 years and have learned more from it in a few months than in decades. Costs £100 per month if used full time, but many use a single sensor at £50 for two weeks every now and then and find it useful for some basic insights. I'm convinced it'll be on the NHS eventually.

None of this will work very well unless you're basal is correct. A rough and ready way of checking is to wait until about six hours after your last meal/insulin and then sit about, don't exercise, put a box set on the telly, and just watch over the next six hours to see whether you stay level or go up or down. If basal is right, it should stay around the same level. Easy to do with a Libre (just look at the overnight graph when you wake up) but still do-able with strips.

The DAFNE people can be quite insistent that you only correct at meals but, with Libre and cgm, there are good arguments for correction doses between meals. There is no harm in seeing what 1 unit does to you if you're at 12. But remember if you've still got insulin in you from your last meal, it'll be working for about 5 hours in total, and can give a surprising drop in the last hour or two, so sometimes it's best just to wait. Libre's useful for that - it shows an arrow pointing downwards when you're dropping, there's been a few occasions when based on a strip test, I've been thinking about a correction but then I can see from the arrow that I'm heading in the right direction, so have just left it.

You'll get the hang of it eventually. It's an art more than a science. Just gone 12:30 now so I'm heading off for the set lunch menu at my local Indian, two poppadoms, fish pakora, lamb jalfrezi, no rice, and the crispier bits of a naan bread. The lchf guys would put me up against a wall and shoot me for that sort of sacrilege, but I mention it only to point out that that sort of meal is easily do-able once you get carb counting and some knowledge about personal responses under your belt.

Good luck, you'll get there!
 

DaftThoughts

Well-Known Member
Messages
397
Type of diabetes
LADA
Treatment type
Insulin
My main concern is 'have I been doing it right?' I was never told how to increase my insulin if my BG are too high or how to adjust when I eat carbs. My BG is still all over the place even though I'm on a low carb low sugar way of eating. My dosages are now around 10mmol of novorapid and 18mmol of lantus. But I don't even know if that's right or too much.

I term of stats/ measurements and numbers, the consultant didn't give me any.

I have now started gaining some of the 18kgs I lost before I got diagnosed, my period gets later and later every month and I constantly feel out of sorts.

Most of what I have been doing is picked up is from here.

I learned on these forums and by searching around the internet how to take my insulin before I was put on insulin, although I have to say my MySugr app has been tremendously helpful gaining control when I did go fully on insulin. I was all over the place before that on oral meds and basal insulin only, and I felt pretty awful throughout it as well.

My first period on a full insulin regime lasted a full 4 weeks, from the end of Jan to end Feb. I just started again a day or so ago and I hope that it will even out on its own. Are you on hormonal birth control? I suspect mine happened the way it did because I have the Implanon in my arm and am sensitive to stress due to anxiety disorder.

I can only echo what's already been said. I count carbs (self-taught, we don't have DAFNE courses in the NL to the best of my knowledge) and figured out my ratios. MySugr has a bolus calculator, so if I punch in all the relevant numbers after setting it up with my ratios, it tells me what to do. I deviate from it only in the mornings (I need to double Novorapid with breakfast because my liver releases extra glucose in the mornings) and when I feel the food I ate should be treated differently (like pizza, I split my dosages when I eat greasy foods because I don't spike until 4-5 hours after eating).

Biking is my main mode of transport, so if I still have active insulin on board I need to either eat a bit extra or take less insulin with my meal. I'm generally fine if I injected more than 4 hours ago though, and the drops are fairly minimal. For 20 minute rides tops I try to be around 7 before I leave.

I don't low carb, I am typically somewhere around 140-200g carbs a day, but my estimated HbA1c is now at around 6.1%. Timing of the injection also matters. I prefer to inject about 15-20 minutes before I eat to catch the rise quickly and it levels out nicely after that. Some people need to inject 10 minutes before, some even 30 - just try it out and see where it goes.

I figured out my ratios by starting low at 1 unit for every 15 grams of carbs, and if my values were still off I changed it to 1 unit per 14 grams, 1 unit to 13 grams etc. I estimated my correction by starting with 1 unit will lower me 2mmol/L, then working my way down to 1 unit lowers me with 1.2mmol/L. I just tested frequently after foods and after correction dosages until I hit the sweet spots that are just right for me.

I also used to have false hypos when I started hitting 5mmol/L, but now that I am rarely, if ever past 8-9mmol/L, I feel good and normal at 5. Hunger and shaky sweats slowly begin as I hit 4, but I'm usually so on-point with my ratios and logging that I haven't had anything near a hypo for weeks.

Personally, I think we all have the ability to take control of this and you're no different I'm sure! It's a lot to take in so take it step by step. Experiment a little if you're comfortable with that, but err on the side of caution. It's better to take 3 smaller injections over the course of 3 hours, than to take 1 large injection and crashing an hour later. Utilize tools like diabetes apps (totally recommend MySugr if you hadn't guessed yet!) for easier logging and more support in getting your dosages right. Be conscious of your food choices and try to incorporate fibers for slower spikes. Keep us posted and always ask questions, no matter how silly they seem. We're all different but we can all use bits and pieces from each other's experiences to fine tune our treatment to how we need it. :)
 
  • Like
Reactions: azure

Diakat

Expert
Retired Moderator
Messages
5,591
Type of diabetes
Type 1
Treatment type
Insulin
Dislikes
The smell of cigars
Hi @MS81
Sorry to hear you have been abandoned, this is not right. Chase up your gp about the correct consultant.
Everyone above has given excellent advice. Rememb r our bodies are not machines so you will never really get the same reading even if you do eat the same thing.
If you wanted to list your meals and carb counts then maybe we could suggest some things to try. Sometimes different ratios are needed at different times of day.
When I was started on insulin I was given a fixed dose to try for about a fortnight before the nurse and dietician made changes based on my numbers. You have been left too long on your own.
Getting the numbers in range will help you feel better, get used to 7s then aim for 6 if you can. This is an ongoing process and none of us ever get it totally right but we can get better at it.
 

Daibell

Master
Messages
12,652
Type of diabetes
LADA
Treatment type
Insulin
Hi. You've been treated badly. LADA is T1 but can come on slowly hence the honeymoon period where you will need to increase your insulin. For example over the last 4 years my Basal has moved form 11 units to 15 as my pancreas has sunk. I get good support from the DN in my surgery and have never seen a consultant; perhaps I'm lucky. So, you need to get your Basal balanced and carb-count at each meal and adjust the Bolus. You don't really need a diabetes training course for that but some people prefer it.