Curious about remission or "reversal"

cynicl12000
By cynicl12000 Latest Reply 2017-07-05 10:58:50 -0500
Started 2017-06-09 17:48:26 -0500

Hello all, I am a new member here. Before I ask my question, I will share my story (it's long, feel free to jump to the end for my actual questions lol):

I began my diabetic adventure 9 months ago (October 2016). At diagnosis, I had an A1C of 13.4 and a fasting glucose of 340. This was surprising to me, as I was slightly overweight, but had always thought of adults getting diabetes as being on the larger side (I am 5' 5" and at the time was about 154 lbs).

My (former) primary care physician sat on a referral to an endocrinologist for several weeks, but I wanted to care control of my health immediately, so I did a LOT of research (some of which led me here, in fact, but I only recently joined), and modified my diet greatly and introduced exercise into my life for the first time in years.

When I finally got in to see my endo, I was titrated to a Metformin regimen of 1000 mg/day, and given Humalog with instructions to take it prior to each meal. He also sent me in to get a C-Peptide measurement, as well as test for autoantibodies - he thought, by looking at me, that I was likely going to be diagnosed LADA.

My C-Peptide results came back right in the middle of the acceptable range, and I showed no signs of any of the 3 autoantibodies, at which time I was officially diagnosed as Type 2.

I continued with my medication, diet, and exercise regimen, and by January of 2017, had my 2nd A1C tested at 5.5%. My endo began speaking with me about titrating up my metformin dosage and cessation of insulin. I argued that the results seemed to speak for themselves, and that the current plan of treatment was working well and, because the drugs were not inconvenient for me, I saw no reason to alter the treatment. He agreed, and I continued on.

The last time I saw my endo was for another quarterly follow up in April 2017, and my A1C had dropped again to 5.1. I had introduced weight training to my exercise regimen, in addition to the cardio I had been performing up that point, and had experienced a 2 hypos in February while I figured out how to balance it with mealtimes. The hypos concerned my doctor, and he asked me again how I felt about either going strictly with a larger dose of Metformin and cessation of insulin, or utilizing Januvia instead of insulin.

I maintained that the hypo incidents I had had were well monitored and treated (the lowest I went was 55, mid workout - I stopped activity and treated immediately), and rare exceptions, and that I feel that the results are hard to refute. He agreed to continue treatment as it has been, and we have lengthened the time between our visits from 3 months to 6 months. He also suggested that I might consider allowing my A1C to be a little higher, I believe mostly because he was concerned regarding my hypo events.

TL;DR

Gauging by my average readings these days, I believe I am on track for another < 5.5% A1C if all continues as it has been. I have not had any other hypo events since February, and am feeling great.

My current weight is around 145 lbs, and my post-prandial readings are typically below 140 mg/dL.

What, exactly, does remissions mean? Does it mean that if I maintain a healthy lifestyle, I will be able to eat more carbs, or is it simply keeping a diabetic diet (low carb) and maintaining a healthy lifestyle without the use of medication?

For those who are in remission, how long after diagnosis did you achieve this, and how did you know that you had reached it?

Thank you for your time.


23 replies

Scared ****less
Scared ****less 2017-07-02 23:25:58 -0500 Report

hi my name scared I was jus like you bur my Dr took me off all madictions with in 6 weeks back in 11/1/2015 til this day im syntoms free and recentli iv been off my diet and all fine but starting wed im back on it but to strick you are one of the lucky ones me ive been eating everything and my last A1c was 5.5 but now I want it down and ill do it the secret is knowing how ypur body works

cynicl12000
cynicl12000 2017-07-04 17:08:28 -0500 Report

May I ask why you want to bring your A1C down from 5.5? From what I have read, there doesn't appear to be much, if any, benefit by lowering it from this level.

haoleboy
haoleboy 2017-07-05 10:58:50 -0500 Report

can't speak for Scared but …
in that truly normal A1c's are in the 4's and achieving that level can reduce the risk of heart disease, in a perfect world my A1c would be under 5%

❤ eat as if your life depends on it
Steve

Gertie02
Gertie02 2017-07-02 01:46:48 -0500 Report

This is an interesting post, particularly as you appear positive about taking insulin. This is something that scares me and I will try to avoid for as long as I can.

I was newly diagnosed with T1DM 6 months ago with a HBA1C of 11.6% and BMI of 22. Supposedly I'm in a honeymoon period - not that it feels like a honeymoon. My c-peptide is low (fasting <0.25 (nmol/l) but >0.08 nmol/l, my insulin response in a glucose tolerance test almost non-existence. However, I'm managing without insulin with Metformin, a very low carbohydrate diet and exercise. My current HBA1C is 6.1%. My BMI is now 19 and I've agreed with my consultant that if my weight drops of my HBA1C rises above 6.5% I have to start taking insulin. I'm taking my life one day at a time. I feel that I'm walking a precipice in the context of keeping my blood sugars in the normal range. My consultant explained that my life would be easier with insulin but I'm enjoying the diet/exercise challenge. I walk/run 15,000 to 20,000 steps a day and feel great when my blood sugars are below 7.8 mmol/L.

cynicl12000
cynicl12000 2017-07-04 17:05:15 -0500 Report

Hi Gertie. You are correct, I am positive about insulin.

My perspective is that it is currently easier for me to eat my goal macronutrient levels and maintain a healthy weight with the insulin than it is without it; and also because it has helped me so much in getting my glucose under control.

It is great that you are currently able to manage so well, and your step count is inspiring (I can't seem to top 11k lol). However, T1 & T2 are different animals in a way - whereas my body doesn't correctly utilize insulin, yours doesn't produce enough, and you likely will need to introduce insulin to your treatment at some point. I am not fully educated on diabetic ketoacidosis (DKA), but as I understand it, if your body cannot utilize glucose via insulin, it will use fat for energy, creating ketones and potentially causing DKA in a type 1, which is a very serious condition.

All I can say about it is this:
1) The needles are tiny and do not hurt, in my opinion
2) Eating healthy and staying active is still vitally important, especially because of all of the other health risks associated with diabetes, but I've found balancing eating and activity to be much easier with insulin than without
3) Never inject insulin straight out of the fridge - ouch!

Gabby
GabbyPA 2017-06-14 08:55:52 -0500 Report

Remission is an outcome of what you are currently doing. So changing that will change your "remission". What I mean is that because you have good numbers doesn't mean going back to old habits. If you are obtaining that with a healthy low carb diet, good exercise routine and medications I would stick with it. The only thing I would change would be to try to reduce meds, but that is not always possible. i would not try to increase carbs, but that is just me.

cynicl12000
cynicl12000 2017-06-14 10:52:21 -0500 Report

Thanks, Gabby, I appreciate your feedback. So, it would seem that the best outcome I should look for at this moment is the ability to limit or eliminate meds from my treatment.

I am fortunate to have good insurance at this point, and do not find the meds inconvenient, so it sounds as though my prognosis should simply be to stay the course unless and until the treatment starts becoming ineffective, and then adjust accordingly.

Gabby
GabbyPA 2017-06-17 11:44:12 -0500 Report

If it works for you the way it's going, then stick with it unless there is something you wish to drop from the treatment. My goal has always been to be off meds. I have dropped all my orals and now am just on insulin. It has taken years and getting off insulin may never happen but I keep working at it.

Mallacai
Mallacai 2017-06-13 07:23:45 -0500 Report

My understanding of "remission " is that when one can manage tight BG control without the use of medication but one has to continue a healthy lifestyle.i.e. lower carb consumption, exercise etc. Personally i aim for a postprandial reading of 120 or less. I asked my doctor about getting off Metformin and he said when my fasting BG shows under 70 consistently i can. There is no set period for going into "remission " but you seem to have been proactive in managing your condition and your excellent results in such short a period says you are certainly heading in the right direction. Keep it up!

cynicl12000
cynicl12000 2017-06-14 10:45:47 -0500 Report

Thanks, Mallacai. My doctor has recommended to me that I go no lower than 70 mg/dL, and would consider a reading under that as a hypo event.

It's interesting how goals for this disease can be so variable. I understand that every patient is different, but if I were to have too many readings < 70, I suspect my endo would insist I cease using insulin.

WASHED OUT
WASHED OUT 2017-06-13 08:36:27 -0500 Report

Why would a doctor want under 70 consistently when 83 is the normal nominal number for people who do not have diabetes. 60 is a lower danger level a number where you never want to go below. 120 is a upper breakaway number that separates those whom are diabetic and those that are not. Please explain your doctor's reasoning for wanting below 70 consistently.

Mallacai
Mallacai 2017-06-13 11:07:54 -0500 Report

I live in the Caribbean and our values are a bit different ( hell i don't know why ). As far as i know a normal Fasting reading should be 70 to 100 for no diabetics and up 120 for diabetics. Years before my DX my fasting BG used to be 70 or slightly higher so i can understand why he would suggest anything lower i should be taken off Metformin.

haoleboy
haoleboy 2017-06-11 10:51:00 -0500 Report

I think of it as "control"
something I will have to maintain the rest of my life
for me it is so much more than maintaining some arbitrary "magic" number

❤ eat as if your life depends on it
Steve

cynicl12000
cynicl12000 2017-06-12 10:45:44 -0500 Report

I agree that dealing with this disease is about a lot more than what an A1C or glucose test tells you at any specific point. However; I think that it is through measurements like these that we can determine progress and effectiveness of treatment.

haoleboy
haoleboy 2017-06-12 13:26:59 -0500 Report

I agree … but these arbitrary numbers are but one "indication" of progress and perhaps effectiveness.
attaining a sub 5.0% A1c would be nice, but if you suffer from complications or have an "early" death … what was the point?
i

cynicl12000
cynicl12000 2017-06-12 17:49:37 -0500 Report

Your point is well taken. However; from my understanding, elevated eAG and A1C levels are positively correlated with complications, indicating that, while they may not be the sole predictors of complications, the association is not exactly "arbitrary".

Is that an inaccurate understanding?

haoleboy
haoleboy 2017-06-12 22:30:36 -0500 Report

that is the current "theory"
I have been "well controlled" (A1c under 6%) for over 9 years now , but in that time I have developed several severe complications, so …
my point is to be as healthy as you can. a low(er) A1c is only one factor

cynicl12000
cynicl12000 2017-06-12 23:46:49 -0500 Report

Thank you for your response.

I'm very sorry to hear that you have developed severe complications, and will keep you in my thoughts.

WASHED OUT
WASHED OUT 2017-06-11 06:09:08 -0500 Report

You have done well but remember this disease can come back if you go back to old habits. Once you have it , then it never goes away it just sleeps awaiting the chance to come back when you slack off. You treated the insulin resistance with becoming more insulin sensitive using the techniques , diet and exercise. You may be able to eat more carbs now without adverse effects. You have learned how to check your progress which is something that you didn't have at the start, this will give you a heads up to any changes that may require your attention again. It never really goes away without proper measures to keep it at bay, you can however keep it sleeping in the closet instead of raging. Many of us on this site have whipped this into the closet as well, now it is just a regular day in the neighborhood but we are still suppressing the beast.

cynicl12000
cynicl12000 2017-06-12 10:43:15 -0500 Report

Thank you. I don't believe I'm in "remission" at this point, as if I attempt to alter my treatment in any way, my numbers definitely show it, but I was curious what it might look like - and it sounds like it looks like a boogeyman in the closet!

Thanks again

Luis65
Luis65 2017-06-10 06:09:04 -0500 Report

It means that you need to stay the course you are on. I would like to add that your good numbers can blow up if you slack off. Eat right, keep the weight off, keep moving and test maybe not daily but regularly to make sure.

This disease has a way of changing so you can't think it is gone. I'm only giving you my personal experience. I got in to great control and had to stop all meds. It was all diet and exercise. I went fine for about 10 years and then my BG started spiking. I ended up on Metformin and Lantus insulin. Exercise, stress reduction and diet have enabled me to reduce the Lantus but not eliminate it.

cynicl12000
cynicl12000 2017-06-10 12:43:42 -0500 Report

Thank you. My endo keeps talking about "reversal," and I've been curious exactly what that would look like.

From your statement, it sounds like the temporary abatement of symptoms, but that I shouldn't be aiming for it, and instead be constantly vigilant and adjust my treatment accordingly to try and maintain good numbers.

Luis65
Luis65 2017-06-11 15:02:44 -0500 Report

That's the ticket. Remission is actually a good word as it doesn't imply cure. To quote Madeye Moody from Harry Potter, "CONSTANT VIGILANCE, CONSTANT VIGILANCE!"

Next Discussion: BLACK VEINS »