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Discussion Starter · #1 · (Edited)
Hi!

This will be my third thread since I was diagnosed.

I am now officially "slow onset type 1" diabetic, since I've tested positive for one of the autoantibodies (although my c-peptide was in low-normal still, also my insulin production still in nowmal range).

Since my diagnosis (it's been a year and a few months) my levels started deteriorating quite fast. At first (first 6 months or so) my fastings were good, below 6mmol(108mg) at all times, also, my highest reading for a long time (until may 2014) was 225.
Then is started going bad, although my last a1c was still quite good (5,9%) in April.

Now, last few months I noticed really bad fluctuations. I've bought extra stripes to test more often just because of that. It seems to be connected to hormone fluctuations (menstrual cycle) but I'm not sure.

My fasting levels now average at 6.3mmol (114mg) but my post meal readings can be anything between 100 to 263 (this was my new record just yesterday). One week ago (during and after my period)my levels were mostly normal, except for the fastings and occasional post meal at 150 or so. BUT mostly not even over 6 (108) !!!
Now last few days, different story again, once again over 10mmol most of the time.

I have my next endo appointment in October, but I feel really uncomfortable having readings over 10mmol (180mg) so often.

I feel like I should push for insulin (I am not on anything, still, since my a1c was still prediabetic) but I'm not sure how that would play out for me with fluctuations like these. I still get occasional reactive hypo, too, so that's another issue.


As goes for diet, that might be a bit of a problem, I tried low carb on which I don't do very well (and it didn't change much as much I've seen), currently I'm just watching not to consume too much carbs at one meal. I know lots (most) of you are strong advocates of LCHF diets, but I will probably never adhere to that, so please no such advice,

my main questions are:

*Should I push for insulin?
*Do any of you LADA people have fluctuations such as mine, what do you do, and if you're already on insulin, how do you handle them?
*With my glucose levels, should I not wait and try to contact/visit my endo, or at least GP earlier?
 

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Hi Kris,

By 'slow' onset, do you mean 'late' onset ?

If you had the antibodies, and are indeed LADA, and not on insulin, I would expect the BG swings to be erratic like you have mentioned. That would be based on your insulin response at any given time. The same is the reason for your hypo episodes at times. But menstrual cycles can cause their own fluctuations, so do keep that in mind.

You are right in saying that most of us here are eating the LCHF way as we have found it the easiest & the best way to manage our BGs (with a few exceptions). Technically, carbohydrates do convert to glucose, irrespective of the type of diabetes you are afflicted with. So even for a T1 or 1.5 carb restriction is a better way to eat. Daily macro ratios & content can vary for every individual.

Coming to the questions at the end of your post, here's my take.
1) Yes, you should push for insulin.
2) We have many LADA members and soon enough one of them will answer this one specifically. I think the fluctuations can be analysed & effectively handled once your insulin regimen is well established.
3) You must see a Dr/endo and if possible do not wait till October.
 

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I adhere to "lower" not "low" carb and I too am LADA. Somebody on here described LADA as trying to hit a moving target with an arrow. I can only say that this has indeed been my experience.

I eat less than 100 grams of carb per day, usually around 70. I do this purely because fewer carbs means lower insulin requirements. Lower insulin means smaller margin for error.

In some ways, once you run out of insulin of your own it is almost easier. The thing is that you want to try and avoid crashing out of the honeymoon period when you still have some insulin being produced and waking up in hospital with ketoacidosis. You don't want to go there,

...so to cut a long story short, yes, I think you need to push for insulin to prevent this happening but it will be a very imprecise science until you do actually run out of your own insulin.

...Your mission, should you choose to accept it.....oh no, you actually do not have a choice on the whole accepting it thing. Suggest you read "Using Insulin" by John Walsh. Good luck.
 

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I is my understanding that, once the honeymoon is over and insulin production becomes erratic, it can degrade very quickly.

I agree with, and encourage you to act on, everything skb said.
 

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And regardless of whether or not you subscribe to LCHF, if you are to control your diabetes and avoid the serious complications that come with uncontrolled diabetes, you need to be eating to your meter. You know your LADA is going to require insulin eventually, and it's of vital importance to manage these wild swings day-in and day-out.

Regardless of your A1c and your fasting levels, it's those postprandials that will get you - especially if you go there several times a day and/or stay high very long after eating. I think you know what you need to do, but are reluctant to give up your old eating habits.

There is a wealth of wisdom on this forum, and it's found across the boards in all the threads. It isn't necessary to start a new thread of your own every time you come here - you can read the existing threads that pertain to your issues, and participate in the conversations therein.
 

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Discussion Starter · #6 ·
Thank you all!

I meant SLOW onset like I wrote, we don't know the term LADA (L as either latent or late) in our country, so I just literally translated the dx I got.

My case seems to be very specific and although I do browse different forums (not just diabetesforum.com) about LADA quite thoroughly, I still can't seem to find information concerning me. That's why the new topic. It's only 3 topics in a year, or is that bad? Also, whoever might have similiar issues/progression in the future as I do - they might be happy to find my topics on the internet. If nothing else - not to feel so alone.

As goes for my diet, I was vegan and went vegeterian because it's much easier to eat low(er) carb diet while you're vegeterian. I've tried low-carbing a few years ago when I wasn't diabetic yet and I just felt drained and STILL got reactive hypos.
Now I watch GI of food I consume, and still try not to go overboard with carbs.
(Shanny, I really don't know what you mean about eating habits, but if you meant low carb - I'm NOT going to do it especially since I've found lots of people from the "other camp" who have their sugars well controlled, too. Seems I'm not the only one who can't stand low-carb. It's not like I'm eating cakes.).

One of my issues was if I'm type 1 at all because of my specific profile, but now, due to progression (while watching my diet), I'm quite sure I am. I've only tested positive for IAA and can't seem to find much/any information on it, I was never treated with exogeneous insulin.
By definiton, I'm suppose to be t1.

I'm away from my home town (where most of my doctors are) until mid-September and it will be hard for me to contact my endo/GP (I'm from Slovenia.. I do not have my endo's number, and I can't seem to get a hold of my GP's office, they're so busy.. the downsides of "free" healthcare).

Ketoacidosis is what I am afraid of. I've bought lots of extra test stripes (which I've just ran out of again..luckily I at least have stripes for ketones in urine still) because I'm not on insulin yet so my insurance only covers 50 stripes in 3 months.

MEANWHILE I will do the 70-100g carbs per day, like you, Hillary. I know I probably can't get complications in these few months my sugars started to fluctuate so much, but I don't want to risk it still
 

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Discussion Starter · #8 ·
I've read that (one of the first page I've gone through when I got diagnosed, and you people here advised me to read that! :) ) and I'm not sure what are you aiming at.
 

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You said that LADA is unknown in your country, and inferred that you don't have a good understanding of what it is. I am trying to help you learn what it is. Why do you argue with everything we suggest?

I think it would be good if you went back to your other threads and read them fully and completely. You had gotten a diagnosis when you first came here, and nothing has changed that I can tell. Our advice is not going to change any time soon, so what you were told in the beginning is the same thing you'll be told in this new thread.
 

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Discussion Starter · #10 ·
wow, whoa, okay. first off, I didn't argue with anyone and all other who responded were quite nice compared to you (and actually, you were, too, in the beginning, and at the only other reply).
thank you anyway.
I might have not read the rules throughrougly but since I see you're a mod I will adhere to what was implied and not post additional topics unless it's something completely new, although I see this forum differently (with the number of threads/topics opened).
The search engine is actually very good here so at least I get general answers.

As goes for my knowledge, I have it, I read a lot, but this disease is so different in everyone plus we learn constantly, don't we? So I don't see why is it so wrong for me to ask questions. Which were specific and not general (if they were, I could've found the answer on my own with only browsing through the net).

Thanks again to everyone.
 

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Hello.

I was almost 46 at diagnosis and referred to as LADA. My endo says it doesn't matter, you are Type 1, just weird in that you autoimmune disorder happened later than normal. The end result is the same as the more common juvenile/adolescent/younger adult diagnosis.

To my understanding, if you're Type 1 you are Type 1, even in the honeymoon phase, as even juvenile diagnosis have their honeymoon. Meaning, you need insulin at least from time to time. So if you have no insulin Rx now I would definitely address this with your doctor.

Also although post meal BG is important to all diabetics, Type 1s need to be especially focused on PRE-meal BG and BEDTIME BG because they dictate whether you need to inject insulin and if so how much.

Right now I am honeymooning. I am watching carbs a lot more closely. I've eliminated or reduced many foods. But even on my best days I can have a BG that requires insulin injections because I'm not really producing much if any insulin those days.

As a result I have nighttime, long lasting/slow acting Lantus for BEDTIME BG. I also have short lasting/quick Novolog for PRE-meal BG. I strongly suggest you bring this issue of having insulin available to you, when needed during your honeymoon, up to your doctor.
 

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Discussion Starter · #12 ·
thank you for this information! my pre-meals are around 110 lately. I will definitely try to convince my doctor to put me on insulin, I just hope they don't have any rules how much my a1c must be or something like that
 

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Going on insulin they will be cautious and suggest BG numbers higher than they need to be, out of fear of you going hypo. A1c is 3 month average and not really telling if doing good or bad. 80-140 mg/dL (4.4-7.8 mmol) daily numbers over 3 months will average about the same A1c as 30-190 (1.7-10.6) so A1c is really meaningless at that level, but they will want to see higher numbers for it too.

Eating high carb will make it harder to keep BG under control unless you are really good or lucky at giving the right amount of insulin at the proper time. Low carb minimizes the amount of insulin needed and reduces the risks of swings going too high or too low. Less insulin means less money spent too.
 
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Kris - do you test after meals? Like 2 hours after maybe? 110 pre-meal seems in range, but depending upon what you eat, it could easily be twice that an hour later, w/o insulin. That's what the short acting insulin is for (Humalog/Novolog, probably others).

The Lantus I take also is a 24 hour basal insulin. I am backing that dosage down as I adjust to a new diet/exercise plan.

At some meals now, I haven't quite eliminated a pre-meal insulin injection, but close to it. Mostly I haven't eliminated them because I've been afraid to. But, I've had meals where I only took 1 or 2 units.

I'm sure everyone is different, but the rules I got from the doc were:
Novolog pre-meal to have a 80-140 reading 2 hours post meal, and
Lantus at night, to keep under 180 fasting first thing in the morning.

I woke up hypo a few times starting in week 3 (actually 3 nights in a row), so that was then I started to back down Lantus. I would like to eliminate that one if I can, but I'm not quite there yet.

Of course, I may yet be honeymooning, so this is all subject to change at any time. However, the doc thought I was out of insulin production, though he did say some honeymoon phase is possible.

Sorry for the long reply - really I meant to just say test after meals, and that will give you a better idea of whether/how much insulin you might need.
 
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Discussion Starter · #15 ·
I love long replies especially if they bring useful information!
:)
Well, yes, I do, but my post-meal readings are very different every time. I can have a week where almost all my post-meal readings will be at about 220 and the the next week around 110 (?????).
I don't quite get it how does exogenous insulin work in cases where there is still some production of insulin in the body, but I know it can cause hypos, right, meaning, if my pancreas is having a good day and does it's job and I inject insulin... I will most certainly have a hypo.. but I can't predict that?
 

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This is a situation where you do need to know exactly what you are eating. The rule you need to apply is outlined in Dr. Richard Bernstein's book - Diabetes Solution - He calls it his 'law of small numbers' and this link discusses it Read It Online!

The idea is that if you eat a small quantity of carbohydrate, you need only a small quantity of insulin - whether it's your own or exogenous. It takes discipline to make a point of avoiding high carbohydrate meals but without that discipline, yes, you are in danger of wild swings in your blood glucose with hypos in the short term but longer term the complications caused by being permanently hyper are probably worse.
 

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It's amazing how many people come to this site and post that they don't want to follow a low carb diet, but they still want us to tell them how to manage their diabetes because it's seriously out of control.

If any of us had that little miracle in our back pocket we'd be multi millionaires and way to busy spending our money to waste time on the internet.

The facts of life for a diabetic are pretty straight forward.It doesn't matter if your type 1 or type 2 if you eat carbohydrates your BG will go up and your body can't control it. The diabetes doesn't kill or maim you, but the high BG does. The more carbs you eat the greater the percentage of the time your BG is high enough to cause damage.

When will the damage occur and what will be damaged? That's the fun part, nobody knows. It might be tomorrow, and then again, many diabetics have gone long periods of time uncontrolled with only minor complications. It's kind of exciting isn't it? Is today the day you wake up and find out two of your toes need to be amputated, or is today a good day to go to the beach, have a few beers and a slice or two of pizza, and come home tired but happy? Makes getting up in the morning a real adventure.
 

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kris - if you're honeymooning or not, you balance your insulin against what you're eating.

For simplicity sake, say this is your experience: 1 unit of fast acting insulin per carb keeps your numbers in line. You estimate how many carbs you'll have, then take that much insulin, then eat.

In the beginning, I found some swings, probably because my system was getting used to a very different new normal. That pretty much stopped after about 2 weeks.

If you do over-inject, and your numbers drop, then you either eat a carb, take a couple of glucose tablets, or drink some juice. They respond quickly to the glucose tabs and juice, and maybe to what to you eat, depending upon what it is.

You will have some hypos in the beginning. Once you adjust a bit, though, they become less frequent.

Before I found this site, I created my own LCHF plan, though it is not as high in fat as those recommended here. The key, though, is limiting carbs.

If you do that, you will get your numbers more in line, and keep them there.

If you are in tune with your body, you're not going to pass out and die from going hypo. You're going to feel a little light headed, then hot and sweaty, then really light headed. I've gone there about 10 times over the past 6 weeks, and each time I did what I said above, and it quickly passed. The first few times, it scared me, and I over compensated. Now, I have a pretty good idea of what I need based on where my numbers are.

For reasons I still don't know, I woke up last night at 3:30 am, feeling light headed and clammy. I took a reading (57), then took 2 glucose tabs and a small shot of orange juice, waited for it pass, then went back to bed.

When I got up for the day about 3 hours later, I was at 87.

It's trial and error, but as the above posters said, being high all the time is what causes later problems.

Insulin is a critical control agent - but so is your diet. Also, throw in some exercise - it does wonders also.
 
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I should add, BTW, that I am only 6 1/2 weeks since DX. I know I will screw up some, but I hope that what you can take from that is this: even if it takes you 4-6 weeks to figure out, that is a blip on the timeline of your life, and you will be loads better off later for having done it.
 
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