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foxl

At what A1c or avg fasting did you start insulin?

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foxl
Actually from everything I read about LADA/1.5, my beta cell death/rising blood sugars were well within the expected time frame of a few months to 4 years. (I was around 14 months when it started).

 

Oooh, yes well-within! And most stuff I read says about one year is typical ...

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foxl
Linda, these are some good questions. As you know, there are alot of similarities between our cases of diabetes. We both were in DKA when diagnosed and both are currently on just oral medications. I know that if I get off the medications or have them reduced and my A1c and other BG numbers start going up then I will want to be put on insulin. Truth be told, I'm not crazy about the whole, medications/diet/exercise routine that I must go through every day just to get some decent numbers. I don't have a life and the pressure is incredible to keep up all this. I can't even imagine what my numbers would be like if I slacked off just a bit. I'm not shrinking from hard work for my health. It's just that it doesn't seem to get easier even to maintain what I'm doing. It's always difficult.

 

Totally understand! I am not too crazy about it either it is time-consuming and I have 3 pretty time-consuming kids!

 

I WILL say ... one week off the Actos, no change in blood sugars, yet! Kelli said she saw it after about two weeks, though ....

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zoelula

[quote name=sarahspins;49526

 

My personal advice? I would request an RX for insulin (at least rapid) and keep it on hand in case you need it... since you test often and seem to be on top of things' date=' you'll know when you start seeing #'s that you just can't manage with diet. Murphy's law says that when you need it, it's going to happen on a weekend or some other time when it's inconvenient to get ahold of your doctor and get a prescription called in. I don't know that I would start on insulin "just because" - if you're comfortable with your current management then there's no reason to change things, only to be prepared for the unexpected.[/quote]

 

For me, my rising blood sugars were much more gradual than this. I started seeing a slow gradual but steady trend higher in September and they weren't crazy high until December. I don't know how typical or atypical LADA this is.

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foxl
Yes, I bet my message came across differently than I intended. It can be hard to communicate 100% accurately via message boards and emails. I wasn't so much saying "here jump on the raw bandwagon because it worked for me," as "Hey look at how much of a difference this seemed to make for me, keep an eye out for it."

 

Realistically I doubt there would be enough double-blind, controlled studies to allow for an evidence-based medicine review on raw foods & diabetes. I did a quick search and there was a successful (though small) double blind study on raw foods and Crohns. But as a MODY3 I have spent my life dealing with a disease that no one new much of anything about - so I'm probably more comfortable with being off the beaten path so to speak.

 

I can also understand about having a busy family/work life - I am a mostly single parent of a 4 year old (also a MODY3), and my 69 year old handicapped father lives with us (I basically case manage or perform all his care). I work full-time in a high tech job where I commute 2 hours a day and often do work from home late at night/early am. So I would be the last person to manage a dietary change that was labor intensive to implement!

 

Tealas, you sound VERY busy, too! Okay, I will try to be more open to that kind of eating ... but it still sounds kinda intimidating to me, to change that radically from what I am doing.

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foxl
For me, my rising blood sugars were much more gradual than this. I started seeing a slow gradual but steady trend higher in September and they weren't crazy high until December. I don't know how typical or atypical LADA this is.

 

Zoe, just from reading your experience, this is kind of what I would expect. But ... we know that post-prandial control deteriorates first, so Sarah's advice is also important ... and makes me think, maybe I will need to keep doing my MMTTs every once in a while to monitor my progress.

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tealas

I don't have LADA, so I can't speak from direct experience but I would think you have (at least) two aspects of beta cell damage to watch out for; continued autoimmune destruction, and beta-cell damage mediated by raised blood sugars.

 

There have been good posts about the second issue, and the recently published "Blood Sugar 101" book has a chapter on this. From research it sounds like fastings over 100mg/dl and post-meal spikes over 140mg/dl are certainly capable of triggering beta cell damage. I found it interesting that while pregnant I was supposed to keep my fastings below 90mg/dl and my post-prandials below 120mg/dl. So once I gave birth I was told I could relax those to 100 and 180! If it is good enough for my baby, I think it might be better for my pancreas most of the time :cool:

 

Elsewhere someone mentioned their doctor using a 6.5 HbA1c as a cutoff for starting insulin therapy. A 6.5 HbA1c corresponds to an average blood sugar of 154. So at that point your average would well over the minimum level that beta cell damage is occuring at, for about three months. :( Looking at it as best we know about beta cell damage, I would think you would always want an HbA1c of at least 6.0 (136 avg) or below - but of course with risks & tradeoffs of hypoglcemic events factored in.

 

I think the autoimmune component of the beta cell damage is probably much more important for LADA's, and unfortunately has no approved treatment as far as I know. My Endo pointed me to this research page last year: TrialNet - Information for Patients If you are within the first 100 days of diagnosis, you may be eligible to enter a trial for autoimmune drugs that could help delay the autoimmune damage to the pancreas.

 

So if you are past 100 days and you want to actively work on the autoimmune risk you would probably have to go into an alternative medical system or consider anectodal-type evidence.

 

For many people this is probably not how they would approach their situation. But for sake of sharing information, the two main areas I know about in this regard are Traditional Chinese Medicine (TCM), and using raw foods (some anecdotal stories of Type 1's preventing further damage and not requiring insulin on a raw food diet). But because I don't have LADA, I have no comprehensive TCM information to share. I did find this article, apparently they have identified a potential autoimmune drug for Type 1 diabetes from the chinese herb hydrangea: New Lead For Autoimmune Disease From Chinese Medicine

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foxl

Tealas, apparently from the articles I am retreiving off PubMed, the high blood sugars are presumed to be a component of the autoimmune damage, as well.

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tealas
Tealas, apparently from the articles I am retreiving off PubMed, the high blood sugars are presumed to be a component of the autoimmune damage, as well.

 

You mean high blood sugars initiating the autoimmune damage to beta cells, or further fueling it once it starts?

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lilituc

I had normal fasting, but super high postprandials. My endo knew me pretty well, so when I called and told him my postprandial bg was up to 300 and wouldn't come down (this was on all the T2 meds), he agreed that it was time to start insulin.

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foxl
You mean high blood sugars initiating the autoimmune damage to beta cells, or further fueling it once it starts?

 

 

My understanding is that the high sugars lead to increased insulin secretion, leading to more attack on beta cells by T cells ...

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foxl
I had normal fasting, but super high postprandials. My endo knew me pretty well, so when I called and told him my postprandial bg was up to 300 and wouldn't come down (this was on all the T2 meds), he agreed that it was time to start insulin.

 

A good reason for documenting my response to a carby meal, once in a while ... ONCE. IN. A. WHILE.

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tealas
My understanding is that the high sugars lead to increased insulin secretion, leading to more attack on beta cells by T cells ...

 

But why does the blood sugar go high to begin with? Due to some initial autoimmune damage to the beta cells? Or are they saying there are other reasons that blood sugars starts to go up and that rise then initiates the autoimmune damage? I guess I'd heard the hypothesis that there was virus which triggered attack to a similar antigen on the beta cells (in some families, hence the genetic component to the disease).

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luckharm

Hi all,

 

No offense taken by the replies to my prior post. We are all here to share information and learn from each other.

 

My Endo was trying different medications before making the insulin decision. I have been on 10 units of Lantus now for about 1 month and my BS numbers are still a little high, averaging about 160 in the morning. I called my DR. yesterday and she has now upped my dosage to 15 units per day. We'll see how that goes.

 

This disease is like trying to hit a moving target. Just when you think you have it under control , it gets away from you. I had a honeymoon period of about 8 months when I had BS numbers of about 110 just with Metformin and I was eating a sensible diet with about 2 servings of carbs per meal. Then, slowly, my numbers started to climb even though I was not changing my diet or exercise. My Dr. said that my pancreas is now producing less and less insulin, thus the need to go on Lantus.

 

I get really frustrated sometimes and just want to get this under control!

 

I am 5' 4" and weigh 120 lbs. Is 15 units of Lantus OK? Maybe I even need more? I am now limiting myself to 1 serving of carbs per meal just to get my numbers down.

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Ti-Jae

Not sure whether to pipe in or not since I'm type 2, but when I was diagnosed at the emergency room in January and admitted to the hospital that night, my BG was over 400 mg/dL and my A1C was 13.54%. The endocrinologist on call, who is still my endo today, immediately started me on a couple insulins. When I last saw him for a checkup in August, my A1C was down to 4.9% so he said I could discontinue the insulin; we'll see how I do without it. I'm very grateful he put me on insulin. Between the insulin, having a supportive endo on my side and lurking in these informative forums, I felt I had much more control than I would have otherwise during a nearly overwhelming time filled with many lifestyle changes.

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foxl

Margie, are you still on metformin with the Lantus? You of course are THIN (I need a green face for envy ;) ), so it might not be any insulin resistance affecting your insulin needs ... or it STILL could be ... but that is not a huge dose of Lantus, either.

 

Ti Jae, I do appreciate you chiming in here, since you were DKA, you too have KPD -- ketosis prone diabetes, and it is possible you, like I have got beta-cell insufficiency as well as IR ... some diagnosticians by the way categorize T2 = non-insulin dependence; T1 = insulin dependence or NO insulin secretion. It it a very loose definition.

 

Please keep us posted on how you do without insulin! It does take about 6 months for beta cells to rebound after a DKA episode, according to one study Mike (Rekarb) posted somewhere in the T1.5 forums ... it sounds to me like your endo followed the protocol I wished MY Endo had followed ... better for your betas. I now see his partner and suspect she would have discharged me on insulin.

 

have you had antibody testing at all?

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luckharm

Linda,

 

No, I stopped the Metformin when I started the insulin, so right now I am only taking 15 units of insulin. This morning my BS was 94 so I was thrilled! Maybe I have finally found the right dosage. I'll keep my fingers crossed.

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foxl
Linda,

 

No, I stopped the Metformin when I started the insulin, so right now I am only taking 15 units of insulin. This morning my BS was 94 so I was thrilled! Maybe I have finally found the right dosage. I'll keep my fingers crossed.

 

Excellent!

 

...................................................................................

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Ti-Jae
have you had antibody testing at all?

Yes, testing for antibodies was among the first battery of many tests he performed right away while I was in the hospital. The results were negative.

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foxl

Well we still are dealing with the same issues --possible insulin resistance, and possible insulin insufficiency in unknown quanitities, right Ti-Jae?

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Rekarb
But why does the blood sugar go high to begin with? Due to some initial autoimmune damage to the beta cells? Or are they saying there are other reasons that blood sugars starts to go up and that rise then initiates the autoimmune damage? I guess I'd heard the hypothesis that there was virus which triggered attack to a similar antigen on the beta cells (in some families, hence the genetic component to the disease).

 

From what I'm slowly gathering, at least for ADMs, is that the first phase starts going slightly off the track at about adulthood. It then lies low as a mild but persistent hyperglycemia that slowly erodes this first phase as glucose toxicity increases. Of course ADMs typically don't have antibodies, now that I think about it.

 

Mike

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foxl

? ADMs? Can you spell out, please? I am learning a lot from you, Mike, and do not recognize that acronym.

 

If 30% of those initially termed Type 2 do turn out ot have some antibodies, as Joslin quotes ... and what percentage of people are never tested for them ... I am not sure we should assume their absence in any Type 2's.

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Rekarb

Oh sorry, that's Atypical Diabetes Mellitus. It's another term for Ketosis Prone T2 before they came up with the AB classifications.

It's a good term to keep handy when you're doing searches on KPD being that it is still used widely.

 

Mike

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eliza0104

I just saw my Endo last week. She said if my A1C comes back at 6.4 or 6.5% that I need to go on a low amount of insulin (if antibodies/c-peptide show LADA)

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Rekarb

Don't get me wrong - insulin is fine but you need to have a baseline of bgs to guide your therapy. The A1C is an over all number but your diabetes is day to day. Spikes are my problem, other people have basil problems. Everyone is different. You should do tests to see how high you spike, how long the spike lasts and what you spike on. Try to walk into your Doc's office as fully informed as you can be. You have to be the pilot and let the Doc know they're the navigator.

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liz

perhaps I was unlucky but my HB1ac was 12.5 last night and i am now on lantus from today previously my results were always in the 12s for the last 2 years, lets hope I get the reduction I need.

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