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New LADA Diagnosis

How do you guys keep your levels so low? I am so impressed! I had nice low sugars on insulin but I am slowly seeing them go up since I stopped it and I can't seem to figure out what foods other then rice raise them.

Do you guys have issues getting test strips when testing that frequently? I was testing 4-5 times a day when I was on insulin and I had to argue to get test strips! That's when I was told to test less?

Is it normal for the longer you fast the higher your fasting sugar? During the week my fasting in the lowest when I take it at 6am on the weekends I test at 7-8 and it's always above 5 then this morning I tested fasting at 9 and it was 5.9! Highest fasting I have had since December.

Ian, I have insulin (novorapid and lantus) and a scale for when I become ill, they said I am "ketone-prone" and anytime my sugars get out of control I need insulin as soon as possible to ensure I don't go back into DKA.

You guys are great! Reading your advice and stories really helps!
 
Liz,

Enjoying my Sunday morning so replying again.

1) It is normal for your BG to start going up from the early morning, and for it to be high by 10 or 11 if no breakfast. Also sleeping in on the weekend has the same result. That's the Dawn Phenomenon, and it's just your liver chipping in and being good. For that reason, non-insulin people eat something small as soon as they wake up - something lives on the bedside table, often - eg four Brazil nuts, or someone was using a cheese string UGHHH!! Doing that tells your liver it can relax, so it gives a happy sigh and stops.

Insulin-taking people include a slight correction dose in their breakfast rapid-acting, and eat breakfast fast.

2) Strips. Once you've been diagnosed Type 1, you shouldn't have to argue for these, but you obviously do face an argument. While you figure that out, you MUST have the strips to test, so why not do as T2s do and get the SD Codefree from Amazon. It's not up there with the best of all, Freestyle Optium or Bayer Contour, but the strips are incredibly cheap and it's okay. So I would get on with that for the moment. I used them in Kenya before I got my other meters, and it was fine.

3) Maintaining low levels. Ian does it (at true normal levels) by 30g a day and ex alone, I do it (less well, a bit higher) by that plus bolus and basal to the doses which keep me at that level. It's trial and error rather than exact ratio calculation. You might call it dosing to your meter, actually. :-) Freestyle Libre helped ENORMOUSLY with getting rid of mealtime spikes. I recommend trying that for a bit. There is no startup cost and it's about £100 a month, and you can stop.

Now I have to get on with clearing out my downstairs room full of rubbish. :-)

Lucy
 
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Liz1986 said:
How do you guys keep your levels so low? I am so impressed! I had nice low sugars on insulin but I am slowly seeing them go up since I stopped it and I can't seem to figure out what foods other then rice raise them.

Do you guys have issues getting test strips when testing that frequently? I was testing 4-5 times a day when I was on insulin and I had to argue to get test strips! That's when I was told to test less?

Is it normal for the longer you fast the higher your fasting sugar? During the week my fasting in the lowest when I take it at 6am on the weekends I test at 7-8 and it's always above 5 then this morning I tested fasting at 9 and it was 5.9! Highest fasting I have had since December.

Ian, I have insulin (novorapid and lantus) and a scale for when I become ill, they said I am "ketone-prone" and anytime my sugars get out of control I need insulin as soon as possible to ensure I don't go back into DKA.

You guys are great! Reading your advice and stories really helps!
Click to expand...
Hi. I find it unusual to only take insulin when you are ill? I would have thought if your sugars start creeping up then using the insulin then would make sense. I maintain my blood suagr by using the insulin I have as and when needed and my recent HBa1C of 6% shows it is possible to have good control. Can you explain your reasoning in all of this? BTW I usually only test once or twice a day (always before driving) as I find my sugars quite predictable; I guess I'm lucky. BTW I don't worry too much about my fasting sugars but more about the 2 hour after meals reading as my Basal is quite well balanced.
 
LucySW said:
Ian, a small point. I think that is rapid-acting insulin, not basal. Basal works much more gently than that - one might start with 2u and see what happens, which would be nothing dramatic. But even rapid-acting doesn't give fixed-ratio results. It depends on the time of day, the context, many things, and tends to give a range of results. Again, you have to try it (with some carb to hand if it goes too far), test, and see.

PS I think we are doing a good job here. I think we are giving useful, real-diabetes experience and with positive messages. I think it's great. A big cheer to you (and a self-sent one from me to me too). x Lucy
Click to expand...
Yes, I only have rapid acting insulin... It's what was given / recommended. I fought hard for a half unit pen, just accepted what insulin they gave me. The previous one unit pen was also rapid acting. i will ask for a basal cartridge next time.
 
Daibell said:
Hi. I find it unusual to only take insulin when you are ill? I would have thought if your sugars start creeping up then using the insulin then would make sense. I maintain my blood suagr by using the insulin I have as and when needed and my recent HBa1C of 6% shows it is possible to have good control. Can you explain your reasoning in all of this? BTW I usually only test once or twice a day (always before driving) as I find my sugars quite predictable; I guess I'm lucky. BTW I don't worry too much about my fasting sugars but more about the 2 hour after meals reading as my Basal is quite well balanced.
Click to expand...
Over the last year I have had the flue once and a sickness bug twice. I see my BG levels rise significantly, especially with the sickness bug (7.0 is my highest). Not being on insulin, I am sure I will start when I am ill..... I doubt that I will stop once taking it, but who knows!!. I know that the earlier I take it, the more chance there is that I might be able to stop it, as I am sure it's high BG levels that destroy beta cells.
 
Ian DP said:
Yes, I only have rapid acting insulin... It's what was given / recommended. I fought hard for a half unit pen, just accepted what insulin they gave me. The previous one unit pen was also rapid acting. i will ask for a basal cartridge next time.
Click to expand...
Rapid-acting makes more sense than basal, I think. Hang onto it!
 
Liz1986 said:
How do you guys keep your levels so low? I am so impressed! I had nice low sugars on insulin but I am slowly seeing them go up since I stopped it and I can't seem to figure out what foods other then rice raise them.

Do you guys have issues getting test strips when testing that frequently? I was testing 4-5 times a day when I was on insulin and I had to argue to get test strips! That's when I was told to test less?

Is it normal for the longer you fast the higher your fasting sugar? During the week my fasting in the lowest when I take it at 6am on the weekends I test at 7-8 and it's always above 5 then this morning I tested fasting at 9 and it was 5.9! Highest fasting I have had since December.

Ian, I have insulin (novorapid and lantus) and a scale for when I become ill, they said I am "ketone-prone" and anytime my sugars get out of control I need insulin as soon as possible to ensure I don't go back into DKA.

You guys are great! Reading your advice and stories really helps!
Click to expand...
Without taking insulin, the only way we LADAs can keep our BG low is with low carbs and exercise and some healthy insulin making beta cells. As LADAs, we still have some healthy beta cells, apparently a normal non diabetic person has around 15 million beta cells. I have no idea how many I have remaining, a million?, a few thousand.... No idea, but I know I have just sufficient to produce just enough insulin if I low carb. As LADA we have an autoimmune system which attacks / destroys our beta cells. When I look back at my BG records for the first 6 months after diagnosis (diagnosed just over a year ago), I can see a slow increase in BG recordings, this with a gradual reduction of carbs, leads me to believe my beta cells were slowly being destroyed during that time. Since I have been following Dr Bernstein solution I have managed to keep my BG levels to within his recommended 4.6 to 5.6 range (except when ill and when travelling away from home for a week or so). I have been following Dr B's solution for over 6 months now, and so far my average BG levels are flat, there is no sign at all that they are increasing, thus I can only assume that my beta cells are not being attacked any more, I feel I have as many beta cells now as I had 6 months ago. When my beta cells are compromised further I will need insulin, and I will keep going with Dr B's solution, as I feel this will keep my remaining healthy beta cells for longer. Thus is the reason to go on insulin early, and this will be when we no longer have sufficient beta cells remaining to keep,to,the levels we aspire to.

I have problems getting test strips. My GP DSN keeps stopping my prescription. This she says because my BG levels are in the non diabetic range and I am not on any meds. Luckily my GP and hospital DSN say I need them, but only a few.... I currently test twice per day. If on insulin they should be much more freely available. I have purchased some through eBay, much cheaper than the pharmacy.
As Lucy says, I find the later I get up / test in the morning the higher my BG levels. As soon as I get up I test then eat a few carbs and some fat (for me a nut and seed mixture with cream), this holds or even reduces my BG levels until I have my main breakfast (eggs and bacon). I have also noticed that if I have a good glass of water around 4:00am my BG levels do not rise, even if I get up much later......maybe It seems to confuse my liver and stops the liver dump thing.

Lucy mentions the freestyle libre. This monitors your blood levels continuously. There is a very, very long interesting thread about this on this forum. It is very new and cost around £50 for 14 days. Probably worth a go with if you can afford it, when starting on insulin as Many have found it helps with insulin doses.... But some have not got on well with it.... It's very new and still maybe in the development stage.
 
Ian DP said:
Without taking insulin, the only way we LADAs can keep our BG low is with low carbs and exercise and some healthy insulin making beta cells. As LADAs, we still have some healthy beta cells, apparently a normal non diabetic person has around 15 million beta cells. I have no idea how many I have remaining, a million?, a few thousand.... No idea, but I know I have just sufficient to produce just enough insulin if I low carb. As LADA we have an autoimmune system which attacks / destroys our beta cells. When I look back at my BG records for the first 6 months after diagnosis (diagnosed just over a year ago), I can see a slow increase in BG recordings, this with a gradual reduction of carbs, leads me to believe my beta cells were slowly being destroyed during that time. Since I have been following Dr Bernstein solution I have managed to keep my BG levels to within his recommended 4.6 to 5.6 range (except when ill and when travelling away from home for a week or so). I have been following Dr B's solution for over 6 months now, and so far my average BG levels are flat, there is no sign at all that they are increasing, thus I can only assume that my beta cells are not being attacked any more, I feel I have as many beta cells now as I had 6 months ago. When my beta cells are compromised further I will need insulin, and I will keep going with Dr B's solution, as I feel this will keep my remaining healthy beta cells for longer. Thus is the reason to go on insulin early, and this will be when we no longer have sufficient beta cells remaining to keep,to,the levels we aspire to.

I have problems getting test strips. My GP DSN keeps stopping my prescription. This she says because my BG levels are in the non diabetic range and I am not on any meds. Luckily my GP and hospital DSN say I need them, but only a few.... I currently test twice per day. If on insulin they should be much more freely available. I have purchased some through eBay, much cheaper than the pharmacy.
As Lucy says, I find the later I get up / test in the morning the higher my BG levels. As soon as I get up I test then eat a few carbs and some fat (for me a nut and seed mixture with cream), this holds or even reduces my BG levels until I have my main breakfast (eggs and bacon). I have also noticed that if I have a good glass of water around 4:00am my BG levels do not rise, even if I get up much later......maybe It seems to confuse my liver and stops the liver dump thing.

Lucy mentions the freestyle libre. This monitors your blood levels continuously. There is a very, very long interesting thread about this on this forum. It is very new and cost around £50 for 14 days. Probably worth a go with if you can afford it, when starting on insulin as Many have found it helps with insulin doses.... But some have not got on well with it.... It's very new and still maybe in the development stage.
Click to expand...
Hi Ian. I regret that my diabetes GP refused me insulin when my bs went near to 7%. Fortunately the following year she offered it (she forgot who I was!) when I was 8.3% and sent me to the excellent DN who started me on Levemir and then we agreed to add Novorapid a month later. I chose the NovoPenfill pens and the Novopen Echo half-unit had just been launched so I now have two pens, one being 1/2 unit. I'm sure the DN will provide two pens if you are given both insulins and if you choose the re-fillable Novo Echo 4 or similar you will get the 1/2 unit. As I still have a little background insulin of my own my bs is fairly stable and I only test once or twice a day. I agree with going onto insulin early when you bs goes above, say, 7%. A lot depends on what daily carb level you choose.
 
Daibell said:
Hi. I find it unusual to only take insulin when you are ill? I would have thought if your sugars start creeping up then using the insulin then would make sense. I maintain my blood suagr by using the insulin I have as and when needed and my recent HBa1C of 6% shows it is possible to have good control. Can you explain your reasoning in all of this? BTW I usually only test once or twice a day (always before driving) as I find my sugars quite predictable; I guess I'm lucky. BTW I don't worry too much about my fasting sugars but more about the 2 hour after meals reading as my Basal is quite well balanced.
Click to expand...

I haven't actually been ill yet since I was diagnosed and the Dr didn't really explain it to me? Other then wrote out the scale and told me when to add the basal in if the bolus doesn't bring the sugars down or I need to much bolus. I think part might be my Dr. being over cautious because he missed giving me insulin when diagnosed and I ended up in pretty bad DKA.

I guess I am kind of lucky because I am an expat living in China so I don't have to follow NHS rules (for now) and pay cash (unlucky part) for everything but still have to argue to get test strips refilled :(

When you guys say sugars going above 7% do you mean the A1C test?

So many questions! There aren't drs or nurses who specialize in diabetes here or at least there aren't ones who speak English!
 
We are in Denmark now, but before that we lived long and happily in Cairo, Egypt. You're right, medical care is a lot easier in these circs if we can just pay for it.

No, the 7% that I'm using refers to day-to-day testing results.

On so much to learn. Yes, there is, but you can and will learn it. Just start somewhere good (as suggested above) and keep going from there!

Isn't online connectivity wonderful for us!

Lucy
 
I wanted to come back and thank you guys for all the advice! I read the books that were suggested and everything was so helpful! I had my first A1C done this past week since my diagnosis and it went from 8.8 at the end of November to 4.9 this past week! I am hoping this means if I can keep it in such good control I can keep in the "honeymoon" for a long long time!
 
Well done Liz, that's brilliant news. 4.9 is an outstandingly good HbA1c! Keep doing what you're doing and long may the honeymoon continue! And when the time comes to use insulin more regularly, you'll be ready for it.

Take care

Smidge
 
Liz1986 said:
The dietician refuses to teach carb counting because she said its just a way for diabetics on insulin to cheat?
Click to expand...
This is totally incredible. I don't know how any diabetic on insulin could not need to carb count. Even if you are on fixed insulin doses at fixed times, you would need to make sure your carbs in your meals stay constant. Has the dietician never heard of the NHS structured education for insulin dependent diabetics, DAFNE, Dose Adjustment for Normal Eating? It's a carb counting course, proven to improve health outcomes for attendees.
 
Liz1986 said:
I wanted to come back and thank you guys for all the advice! I read the books that were suggested and everything was so helpful! I had my first A1C done this past week since my diagnosis and it went from 8.8 at the end of November to 4.9 this past week! I am hoping this means if I can keep it in such good control I can keep in the "honeymoon" for a long long time!
Click to expand...
Well done Liz. I am hoping to get down to 4.9%, but not got there yet.
I think you are doing everything possible to keep / extend the honeymoon period for as long as possible. Keep us posted on progress.
 
smidge said:
Certainly Lucy - I've just been looking back at my spreadsheet over the years to try to remember some of the insulin trials and tribulations!

I'm currently on 18 - 20 TDD most of the time - obviously that varies depending on what I've been eating. It's made up of 7 units Levemir in the morning and 5.5 units Insuman basal at night, with 1.5 units Apidra for breakfast, 1.5 - 2 units Apidra for lunch and between 3 and 5 units Apidra for tea. There is still the odd correction bolus although they are much rarer since replacing Levemir with insuman at night - except this week where I've been having to correct before bed or on fasting again - not sure why. I'm happy enough with that and it is down a bit on where it was pre-Christmas as I've reduced the evening basal since switching to Insuman at night. I was on 8 - 8.5 units Levemir in the evening whereas I only seem to need 5.5 of insuman. I keep thinking I should swap the morning Levemir for Insuman and see how that goes, but as my BG seems to have settled pretty well and the hypers and hypos are reduced greatly, I'm sort of leaving well alone at the moment.

Looking back, after the first 9 or 10 months with no meds, no testing and no idea what was going on, my HbA1c had gone from 5.7 to 13 something which was pretty shocking. My weight was around 6 stone and I was pretty ill. I'd cut the carbs as soon as I was diagnosed and was having about 30g carb a day back then - just as well I was really as I'd have probably been dead otherwise. Anyway, as soon as I saw the consultant he put me onto insulin. I started on 6 units Insuman before bed. Within a couple of days, this had reduced to 4 units, then 2 units and then 2 units every other day. That went on for a few months and I had to start taking it daily again and then my BG started to rise during the morning so I added a morning 2 units of Insuman. After about 6 months I was on 4 in the morning and 2 at night but my BG was spiking after meals even though it was coming back down before the next meal, so I started using really small doses of Apidra with breakfast and tea - the Insuman and my own insulin was still managing to cover the low-carb lunch. Probably after about a year my post lunch levels were rising so I had to start taking 1.5 units Apidra with lunch. That was OK for a few months, but the Apidra and Insuman were combining mid-morning to cause regular hypos (which I was happy enough correcting with a finger of kitkat!) and my consultant wanted those stopped so I swapped onto Levemir - and it was all downhill from there! Fasting levels were the first to suffer so I gradually increased my evening basal to 5 units Levemir from 2 Insuman, then the late afternoon levels increased so I increased my morning basal and I had to change my theoretical ratio from 1:10 to 1:8 and was having to add more and more Apidra to cover protein etc. So over the following year my basal increased to 7.5 morning and 8.5 evening and my Apidra increased with each meal - my TDD was probably about 25 -28 units and this included corrections for high fasting and high late afternoon levels. My SDfromMean increased too from the 1.9 area to the 2.9 area, so more wild swings. Then it all fell apart badly during the early part of last year and I was correcting most days. Throughout this period my carb intake was between 40 and 50g a day as it had been since startng insulin. I assumed this was just the LADA progressing, but the switch back to Insuman in December has reduced my SDfromMean, reduced the fasting and late afternoon hypers, reduced my evening basal needs and reduced the amount of Apidra I need with breakfast and lunch. So, now I've no idea how much of my increased insulin needs were LADA progressing and how much were Levemir just being a bit **** for me!

It's been a real eye opener for me. Incidentally, for the first few weeks back on Insuman, I couldn't keep my BG up, it was like being in the honeymoon phase again so I wonder if our bodies simply sometimes need a change? Anyway, my TDD is now lower than it was for the last year and I expect it would be even lower if I switched my morning basal to Insuman as well. In fact, I think I've just convinced myself to abandon the morning Levemir and use Insuman instead!
Click to expand...

@smidge, Did you say your TDD has gone down now with Tresiba?

Reading this over again, the pattern is so clear and pronounced - always the basal that’s given you the trouble, whereas you’ve been fine with only very small rapid-acting doses for meals all the way along. It does seem to be a case, for you, of finding the right basal insulin. Thank goodness you have now.

For me, I'm not even really sure if my basal makes any difference. I should stop it for a few days to see, really. I always wake between 5.2 and 5.8 (I much prefer the 5.2 of course). What feeds in immediately is the bolus control of mealtimes. If I get the timing and dose of that right, nothing ever goes wrong. Also eating late at night is very bad news, always bad for the following morning. I should really be done with supper by 7:30 every night.

Lucy
 
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