Doc and me, clueless

[conguitos]

Hi to everyone, I would like to read your opinions on my case that I will describe in the following paragraphs (sorry for the long text).

I was diagnosed on january 09 as diabetic. Roughly 2 weeks later I was officially declared as a type 1 diabetic, mostly due to my high GAD antibodies count and numbers on diagnosis.

At diagnosis my HbA1c was 14%, the FBG 540. I had symptoms for around 4 months prior to diagnosis.

I was dispatched after a 30 minute instruction on how using Lantus. I inmediately began injecting 15 IUs at 22:00. I also had begun a low carb diet after new year's day.

The docs told me to call them if my BG dropped below 144, so they could decide how many units I should inject so I don't get lows.

The diagnosis was a friday, on saturday my BG was in the 250 already, on sunday it was around 150, so I decided to inject again and not call the docs. On monday I woke up trembling and sweating, I measured 81, I ate some sugar and then I managed to get it over 100. I went to the docs and told them to stick this Lantus whenever they wanted. I stopped using insulin after the 3rd day. And 2 weeks later I switched docs after one of the first ones told me that he told a lot about diabetes because his mom was diabetic, that after I yelled "inform yourself!" to him.

I began supplementing aggresively with different substances. Some showed effect quite rapidly, others seemed to act in the long term, usually after 3 to 4 weeks. I even did a Lantus rubbing therapy, smearing the thing into my nose. The most visible effect was, that I got flu symptoms and felt crappy for some days. And boy, the stuff stinks like chicken ****! Another thing was the heat shock therapy, taking very hot baths every day, for 2 weeks.

Numbers were getting better and better, the next HbA1c, two months after diagnosis was around 7% already. Four months after diagnosis 5.6%. The last one 5.8%. My meters show now an average of 72 for the last 2 weeks. Actually since 3 weeks, my numbers are inbetween 40 and 120, but they seldomly surpass 100.

That being said, I'm not suggesting here that rubbing Lantus into my nose, taking hot baths, sun bathing, vitamin D3, low carbing or munching stuff like Vanadium, Magnesium, Zinc, Bitter Melon or whatever is suggested over the internet has led to my actual situation. It's just as an info as what I've done to day.

Some weeks ago we did the glucose tolerance test, which I miserably failed, FBG was 126, 1 hour after beginning the test, 234, 2 hours later 360. 5 hours after the test I was at 81 again. Some how I think that the glucose shock triggered something, because it looks like since then my numbers got better and better.

Last week I got the results of the insulin and the c-peptide levels in the blood. Well, they were, NORMAL!!! The comentary of the lab, "levels suggest normal insulin production". They were on the low side, but within range and not on the limit. So, the FB was 126 but insulin levels were normal, suggesting that I have some sort of insulin resistance, but if I see which effect the Lantus had 9 months ago, it's hard to believe that insulin resistance is an issue in my case.

So now we're sitting here, my endo and me, and scratching our heads.

My impression, as I wrote some weeks ago in these forums, is that, in my specific case, the culprit is the nervous system that is giving wrong signals. Because of, most probably, to gluten intolerance, which will cause a feedback with other chronically toxic substances contained in my former diet. With time things will go bananas in my organism, leading to diabetic symptoms. The source, in my opinion, is chronic inflammation of organic tissues.

Right now, it looks like the hole problem is going into remission. It's clear that my classification as type 1 diabetic is against the concensus, and that what is happening is not what usually is labeled as "honeymoon". Yet the values at diagnosis, would suggest either 1.5, 1 or LADA, although, those differentiations, to me, mean nothing.

I guess that it's time to repeat the GAD antibodies test, if it has gone down or even disappeared, then lucky me, if not, hmmmm.

On the internet are other cases similar to mine and I think that on these forums there are some people that share some commonality with my case, has anyone had something similar or is experiencing the same?

Thank you for your time :)

[Subby]

Hi to everyone, I would like to read your opinions on my case

Your extremely limited experience with Lantus proves nothing about insulin resistance, except perhaps to say that you weren't suffering excessive IR at the time. Removing carbs at the same time you may well have been removing the "icing on the cake" causing BGs to fall out of range, already. You had an insulin overdose, sadly very normal and quite common when trying to get a correct dose, and didn't allow for the process of attenuating dose to suit your situation, is what happened.

Your inability to understand or accept the difference between type 1 and type 1.5/LADA means only that you (and I take it, your doc) are personally in the dark.

Your c-pep, being on the low side of normal, I believe is mainly relevant in comparative terms, and certainly suggests type 2 is indeed unlikely. How does it compare number to number, to your previous c-pep?

Assuming you are actually looking for feedback - my advice would be to indeed get GAD checked, and while you are at it check out the other autoimmune responses and tests that are more particular to Type 1.5 rather than type 1 EVEN if you don't "believe" in the difference. You might learn something interesting. Nothing to lose. If you are "cured" or in full remission of whatever has been going on, nothing you or I say makes any difference, you can just be grateful and move on. Good for you!

[dbaratta]

Assuming you are actually looking for feedback - my advice would be to indeed get GAD checked, and while you are at it check out the other autoimmune responses and tests that are more particular to Type 1.5 rather than type 1 EVEN if you don't "believe" in the difference. You might learn something interesting. Nothing to lose. If you are "cured" or in full remission of whatever has been going on, nothing you or I say makes any difference, you can just be grateful and move on. Good for you!

I don't get how someone can be diagnosed with type 1 then have normal pancreas function? Did I read that right? Did this person say their readings were normal for insulin production? Type 1 has no or very little insulin production, is that correct Subby? This post confused the heck out of me.
:dontknow:

[fgummett]

I think that Subby has pretty much nailed it.

Why does this need to be anything more than Type 1 honeymoon or Type 1.5..? Especially as you also reduced your need for insulin by changing your diet.

As for rubbing Lantus in the nose... I'd suggest that this is questionable activity at best. Does the manufacturer recommend this route? Has it been tested? Is it safe? How can you possibly know what dosage (if any) you are getting?

[fgummett]

Diabetes - The Honeymoon Period in Type 1 Diabetes (http://www.healthcentral.com/diabetes/c/651280/50845/honeymoon-period)...in many children, teens, and adults with newly diagnosed diabetes, not all of the pancreatic islets have been destroyed. To exhibit symptoms of diabetes, approximately 80 percent of the pancreatic islets are either destroyed or non-functional. Therefore, 20 percent still may be remaining. After initiation of insulin, aerobic metabolism (the efficient energy pathway) is resumed and glucose may be transported into the cells and metabolized for energy. In anthropomorphic terms, the body "breaths a sigh of relief," and normal metabolism can resume. After the body starts utilizing glucose and the high amounts of glucose bathing the islet cells in the pancreas (glucose toxicity) are decreased, the remaining islets may begin to recover the ability to produce insulin, resulting in the honeymoon period. This process does NOT occur in all patients and it sometimes takes several weeks to a month to start noting the production of the body's own insulin (endogenous insulin).

How do you know that you have entered the honeymoon period? Generally, once insulin is started, one notes that over the course of days to weeks, blood sugars and the variability of the blood sugars have decreased. Blood sugars that were formerly in the 200-300 range now have decreased to near normal levels in the 100s and even 70-100 range. To prevent lows, your diabetes team will start to decrease the amount of injected insulin. Generally, however, you remain on some insulin to deter future destruction of those islet cells. There are research studies focused on prolonging the honeymoon period. The honeymoon period also allows for the islet cells to rest as injected insulin is working as an assist. It is unclear how long a honeymoon period may last; it could be several months to more than a year. It is different for each individual with type 1 diabetes.

The biggest question is how someone can prolong the honeymoon period. Clearly, the longer you prolong the honeymoon period, the longer you have control of blood sugars and the chance to delay potential, future complications related to high blood sugars. This is a huge question prompting much funding and research. Doctors and scientists do know that remaining on small amounts of insulin seems to prolong the honeymoon period (to decrease the "glucose toxicity" surrounding islet cells). Other suggestions include the initiation of a low carbohydrate diet. If one consumes low amounts of carbohydrate, less insulin will be required to enable glucose transport into the cells and theoretically cause less stress on the islet cells. Ironically, the low carbohydrate diet was the treatment of choice before the discovery of insulin to avoid the symptoms resulting from the inability of the islets to metabolize glucose

http://www.diabetesnet.com/diabetes_types/diabetes_type_15.phpType 1.5 is one of several names now applied to those who are diagnosed with diabetes as adults, but who do not immediately require insulin for treatment, are often not overweight, and have little or no resistance to insulin. When special lab tests are done, they are found to have antibodies, especially GAD65 antibodies, that attack their beta cells. This sort of diabetes is sometimes called Slow Onset Type 1 or Latent Autoimmune Diabetes in Adults or LADA.

About 15% to 20% of people diagnosed as "Type 2" actually have this type. They are often diagnosed as Type 2 because they are older and will initially respond to diabetes medications because they have adequate insulin production. The treatment the person is first put on may be diet, exercise, and standard Type 2 medications.

Since insulin resistance is minimal or non-existent, medications designed to reduce insulin resistance such as Avandia and Actos are not effective. Other meds that stimulate the pancreas to produce insulin, slow digestion of carbs, or reduce excess glucose production by the liver are often effective in controlling the blood sugar for a few years.

[Grunch]

My impression, as I wrote some weeks ago in these forums, is that, in my specific case, the culprit is the nervous system that is giving wrong signals. Because of, most probably, to gluten intolerance, which will cause a feedback with other chronically toxic substances contained in my former diet. With time things will go bananas in my organism, leading to diabetic symptoms. The source, in my opinion, is chronic inflammation of organic tissues.

Wow man, you need to stop this. You have diabetes and that's it. The glucose tolerance test proves it. Having insulin levels "on the low side, but within range" when fasting is normal and predictable. Your body manages to keep your blood sugar kind of controlled when fasting so you obviously have to be producing insulin. You are just deluding yourself coming up with those crazy theories.

[Mich]

If you truly are a diabetic who just doesn't get it, I am so sorry for the pain of your denial. If you are messing with us, as I suspect, I will repeat myself: Shame on you for confusing people who are new and coming here for sound advice and evidence-based sharing of ideas.

Mich

[jenb]

If you truly are a diabetic who just doesn't get it, I am so sorry for the pain of your denial. If you are messing with us, as I suspect, I will repeat myself: Shame on you for confusing people who are new and coming here for sound advice and evidence-based sharing of ideas.

Mich

Mich - if you look back at the OP's earlier posts, you will see that he is not messing with us, just himself. He really does want to find an alternate diagnosis and treatment. I'm not quite sure what assistance to offer, since it's been firmly rejected in the past, but I hope Conguitos finds whatever affirmation he's looking for.

Jen

[foxl]

Surely you have LADA, this is a honeymoon caused by Beta-cell recovery. I totally understand your incredulity -- I felt the same way at diagnosis, and ever since, as my blood sugars came under control. It IS dramatic, and not what I thought diabetes of any type might be like.

It is that simple -- and since you DO have LADA, prepare for a gradual demise of your beta cells and an increase in insulin or other medication needs, over time.

[Mich]

Jen, I have read every post Conguitos has made on this forum since the begiining. So many kind people have tried to explain to him ad nauseum what the situation might be. It is his supposed intellect coupled with the sometimes rude denials that lead me to think he is not for real.

You can find this individual in other forums, notably German ones, where incidentally, he posts things he has heard here as fact. Someting just does not ring true. The German forum members react exactly the same as we have, and many of the members of those forums also feel the way I do.

I didn't post this lightly. If I am mistaken, as I said, I am truly sorry for the pain of such deep denial, but I have my doubts.

Mich

[soso]

Over 5 yrs since I was dx.. I had 2 c-peps one at dx and 2 years later .. both were still within the normal range, (279-1200) first 500 described by endo as marginal amt of insulin production (not on insulin or meds then) did very low carb for 2 yrs with steady increasing bgs (though not horrible numbers if I did not go over 7g carb per meal (lol)) after 2yrs c-pep was 299 and I went on insulin...

Insulin needs have been up and down since then, but I have seen overall a need for a steady but slight increase in my !:C Ratio... however I have been able to dispense with my Lantus at least for the time being.

I must admit, there still exists in me a little fantasy that I might recover further, but all it need to dispel that notion is 50-60g carb, even WITH insulin.
I am just grateful for the advantages I have right NOW.

I have proven to myself over and over that all my hand wringing to understand what is what with me doesn't make a difference to the reality of having Diabetes... it is what it is....

[foxl]

I must admit, there still exists in me a little fantasy that I might recover further, but all it need to dispel that notion is 50-60g carb, even WITH insulin.
I am just grateful for the advantages I have right NOW.

I have proven to myself over and over that all my hand wringing to understand what is what with me doesn't make a difference to the reality of having Diabetes... it is what it is....

Well said! As I jot in my log book, "YUP, Still Diabetic!"

[lark 27]

Lots of very serious replies have already been posted, so thanks to everyone for that, but I can't get over the concept of rubbing lantus in my nose, and it's got my imagination working. It has me laughing so much and then I try to stop and I picture it again and envision rubbing it in my nose only to think that it smells like chicken sh-t. So I then decide to just skip the lantus and start rubbing the chicken sh-t in my nose because I come up with the theory that perhaps by offending my olfactory system with that horrible smell it might cause my body to somehow produce insulin.

Sorry, for adding absolutely nonsense to a thread that perhaps might not need it because it is a serious topic, but I can't get these images out of my head.

ROFLMAO,

[conguitos]

Jen, I have read every post Conguitos has made on this forum since the begiining. So many kind people have tried to explain to him ad nauseum what the situation might be. It is his supposed intellect coupled with the sometimes rude denials that lead me to think he is not for real.

You can find this individual in other forums, notably German ones, where incidentally, he posts things he has heard here as fact. Someting just does not ring true. The German forum members react exactly the same as we have, and many of the members of those forums also feel the way I do.

I didn't post this lightly. If I am mistaken, as I said, I am truly sorry for the pain of such deep denial, but I have my doubts.

Mich

Stop it already! Enough is enough, your ever recurring accusations and, veiled, insults are beyond belief. Look, I posted at the early beginning in 1 german forum and about Dr. Faustman's work, got flamed because of that by some fellow posters, while others took the info and researched by themselves to come to the conclusion that it may be useful. That was nearly 8 months ago. Its ages I haven't been in there, so stop putting as if I would be a regular on those forums.

And since when do you currently speak/read german so well, that would qualify you for understanding anything written in there? Who's the fake here?

Simply grotesque.

[fgummett]

I daresay you are simply confirming suspicions by reacting only to the suggestion that you are trolling rather than to any of the serious posts suggesting how to approach your Diabetes.

Since when does one have to live in Europe to speak German... who do you think populated the USA? :confused:

[conguitos]

Surely you have LADA, this is a honeymoon caused by Beta-cell recovery. I totally understand your incredulity -- I felt the same way at diagnosis, and ever since, as my blood sugars came under control. It IS dramatic, and not what I thought diabetes of any type might be like.

It is that simple -- and since you DO have LADA, prepare for a gradual demise of your beta cells and an increase in insulin or other medication needs, over time.

Thanks for your insight, yes actually it's what it comes nearest to my case, the LADA theory, the other one would be the silent coeliac.

For the gradual demise, well, we'll see, for the moment it goes in the opposite direction. Perhaps I'm too optimistic on what I believe, but we'll see what the future brings.

[foxl]

Thanks for your insight, yes actually it's what it comes nearest to my case, the LADA theory, the other one would be the silent coeliac.

For the gradual demise, well, we'll see, for the moment it goes in the opposite direction. Perhaps I'm too optimistic on what I believe, but we'll see what the future brings.

Well, take care of yourself and keep us informed!

[conguitos]

I daresay you are simply confirming suspicions by reacting only to the suggestion that you are trolling rather than to any of the serious posts suggesting how to approach your Diabetes.

Since when does one have to live in Europe to speak German... who do you think populated the USA? :confused:

I doubt that Mich speaks fluently german, it could be if so, my apologies. But her accusations are baseless and insulting, I'm genuine, so stop it.

It's also very suspicious to me, that whenever someone posts a story that is not so standard, you pop up, with some others, hounding them. Probably only my imagination.

To answer your question about rubbing Lantus into my nose, I followed the INIT protocol that is done in Australia.

And no, it's not recommended by the producer of Lantus and it shouldn't be done without medical supervision.

[conguitos]

Your c-pep, being on the low side of normal, I believe is mainly relevant in comparative terms, and certainly suggests type 2 is indeed unlikely. How does it compare number to number, to your previous c-pep?

That's the crux, the first docs told me: "we don't need that, it's clear you're diabetic", that's also one of the reasons I ditched them. So, no, lamentably there wasn't a c-peptide test at diagnosis.

Assuming you are actually looking for feedback - my advice would be to indeed get GAD checked, and while you are at it check out the other autoimmune responses and tests that are more particular to Type 1.5 rather than type 1 EVEN if you don't "believe" in the difference. You might learn something interesting. Nothing to lose. If you are "cured" or in full remission of whatever has been going on, nothing you or I say makes any difference, you can just be grateful and move on. Good for you!

I did a GAD and at the beginning ICA antibodies test, ICA were negative, and GAD positive, around 2500 IU/dl. But I will press for one again, last one was 6 months ago or so.

I also did a test for antibodies that would show coeliac, but those came negative as well, but apparently that doesn't mean a lot, in the case of coeliac.

I'm not cured, as the glucose tolerance test clearly showed, but I would like to share with others my experience as I see that things doesn't seem to be as clear as we all would like.

But I still don't understand why my doc doesn't want to change me from type 1 to 1.5, f.e. It must be some sort of insurance thing, I guess.

[foxl]

Type 1.5 is not an official diagnosis, not in the US and I do not think in Europe either. Neither is LADA.

It DOES distinguish your antibody profile.

Not sure why no C-pep -- C-pep was MORE acceptable to my MD, than GAD testing!

[lilmoe76]

I am recently diagnosed with Type 1, although I have a high normal c-peptide. My GAD was positive.
After reading so many posts on how different everyone is-I guess I will believe anything at this point!
Here is my question-why is LADA, T1.5 or any of those "grey area" diagnosis not endorsed by the ADA or anyone else for that matter?

[foxl]

Because they are still controversial, and those organizations decide things by committee ... same reason ADA is so slow to make any statements concerning lipids and diet.

[Grunch]

For there to be an official diagnosis of LADA you would need to at least have objective parameters defining what is LADA, but we don't have anything even close to that.

Even though LADA is officially T1 doctors treat it similar to T2 when it's not very advanced. And that's the important part, giving the best treatment based on how the patient responds. The rest is just semantics.

[foxl]

For there to be an official diagnosis of LADA you would need to at least have objective parameters defining what is LADA, but we don't have anything even close to that.

Even though LADA is officially T1 doctors treat it similar to T2 when it's not very advanced. And that's the important part, giving the best treatment based on how the patient responds. The rest is just semantics.

There was a good review article recently. Our antibody profile differs from other type ones and any immunotherapy would be quite different -- ie use of GAD-65. And there is quite a bit of debate on drug therapy going on currently, too. Is insulin best? Or TZD's? No one is quite sure WHAT the best treatment is, yet.

[fgummett]

Canadian Diabetes Association 2008 Clinical Practice Guidelines has this to say on the Classification of diabetes... • Type 1 diabetes* encompasses diabetes that is primarily a result of pancreatic beta cell destruction and is prone to ketoacidosis.This form includes cases due to an autoimmune process and those for which the etiology of beta cell destruction is unknown.
• Type 2 diabetes may range from predominant insulin resistance with relative insulin deficiency to a predominant secretory defect with insulin resistance.
• Gestational diabetes mellitus refers to glucose intolerance with onset or first recognition during pregnancy.
• Other specific types include a wide variety of relatively uncommon conditions, primarily specific genetically defined forms of diabetes or diabetes associated with other diseases or drug use

*Includes latent autoimmune diabetes in adults (LADA), the term used to describe the small number of people with apparent type 2 diabetes who appear to have immune mediated loss of pancreatic beta cells

Definition, Classification and Diagnosis of Diabetes and Other Dysglycemic Categories (http://www.diabetes.ca/files/cpg2008/cpg-2008.pdf#page=24)

Dr Ehud Ur is one of our local Diabetes Specialists here in Halifax

[foxl]

Aw ain't that * cute!