This is my first time posting, love the site so far, great community. But I have a huge problem, and I wanted to see if anyone had feedback for me.
I was diagnosed in October 2007 at age 20. My primary care doc thought I was too old for Type 1 (yeah, pretty lame) so diagnosed me as Type 2 and started me on Metformin. At diagnosis my fasting sugar was 268. Within a week, my blood sugar was over 500 and I was sent to the ER, where I got my 1st A1c-- 14.1.
Needless to say, I was put on insulin and started seeing an endo, who diagnosed me as Type 1. Everything has been fine since then, by 3 months into treatment my A1C was 5.7 and is now 5.9 (never been over 6.0 since insulin). I hadn’t had many problems with lows at all, either, and have considered myself in the honeymoon phase. I have been taking a pretty steady dosage of 20u lantus and 1u novolog/ 15 g carbs, though the lantus dose has varies a few units in either direction over the past couple of years.
Two weeks ago, i woke up in the middle of the night feeling worse than ever in my life, with my sugar being 52. I got it back up over 100 after about 30 minutes, but over the past two weeks I’ve had to keep taking less and less insulin! That night I had low blood sugar, my lantus dose was 17u. Over the past two weeks it has gone down more and more, last night i only took 11u and I haven’t taken any Novolog since last thursday. I have been eating between 200 and 250 grams of carbs a day, and my blood sugar before meals has not been over 95. It is usually between 70 and 85, and i have had under 60 twice.
I made an emergency appointment with my endo today, and she said only one other paitient in her career has exhibited this before me. That patient was able to switch from insulin to pills. I don’t understand how this can be! Has anyone had a similar experience? I have read about 1.5 diabetes, or LADA, but I don’t seem to fit in with what I’ve read.
So sorry for the long post. Thanks for any insight you guys might have.
It does not appear that you were misdiagnosed after seeing the endo, and “honey moon periods” generally do not last longer than a year. There are usually the normally expected increases in blood sugars and insulin dosages required. as time goes by, NOT decreases.
All things and miracles are possible!!! There is so much about the human body we do not, cannot know… nor completely understand. I would suggest you continue to log your ever decreasing need for exogenous insulin and keep in contact with your medical team over the next few days or weeks.
I have personally met one woman whose body spontaneously started making insulin after 27 years of Type 1diabetes, that had resulted in a prior amputation, blindness and a stroke. 3 days later,when she awoke from the post-stroke coma, she no longer needed insulin and could eat what she wanted. When I met her in a rehab center, She was being fitted for a right lower leg prothesis and taking physial therapy to learn how to use it. Though she still had the physical results of the diabetes complications, She was enthusuastic,grateful, energetic,happy, and praising God for her “healing”…
Again ,There are some things that medical science cannot and will not be able to explain at this point in time. I am so happy for you and I hope/pray that your restoration continues…I have no scientific explanation, but I do not need one. “Faith is the evidence of things not seen.( nor understood)” This is truly wonderful!! Thanks for sharing!!
Hi I am a weird diabetic myself…There are times I am 100% dependent on insulin shots and times I do have some, not enough, natural insulin, so I still need insulin shots. My system can Flip Flop for a reason or no reason at all. I will describe my last incident or F/F.
My BS levels had been creeping up, but I was not testing and not taking enough insulin. I gradualy began having balance problems, fell and tore my rotor cuff. 4 CATARACTS TOTAL, 1 REG AND ONE DIABETIC IN EACH EYE. I ended up in a mild DKA and had to return to doctoring. Got my diabetes back in control, 5 shots/day now. For about 18 months I was TOTALY as insulin dependent as an type-1, then I began to recover SOME. I have flip flopped around some myself, sometimes very fast. One time I was cleared by the doc in the morning and landed in the horsepital that same night via meat wagon, go figure.
When I was 14 I was threatened with shots, recovered, got a Dr letter to get in the Navy, hospitalized 4 times in 3 years. The last time I had to pass a urine sugar test to return to active duty and did (so they said).
I have plenty of complications. I still get 200s and even a rare 300s once in a while Being an unusual diabetic that does not quite fit the conventinal types, I started a group called Orphan Diabetics, all are welcome. We could use more members there, we are so few. a little more posting etc and maybe we can get even more people that do not fit the usual, typical pigeon holes or boxes. (llink below)
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My first thought when I read the title was that you might have a similar situation to mine last summer. I was diagnosed 14 years ago and I had slowly begun increasing my Humalog and Lantus dosage as needed. By last summer I was taking 30 units of Humalog with each meal and 34 of Lantus at bed. One night I went to bed just fine and woke up in the back of an ambulance around 4 a.m. It’s a long story and I won’t go into it again, but after that day my insulin needs began decreasing drastically. After a couple of weeks I was down to 5 units of Humalog and 12 Lantus. I don’t believe in God or miracles or any of that, but at that point I was beginning to wonder if there was something “else” (more supernatural) that was reversing my diabetes.
The answer turned out to be very simple. For most of those years as a diabetic I was taking my shots in my arms (I knew nothing about scar tissue at the time). After that hospital incident I began using my legs and butt. I didn’t really have a reason for it and the hospital had nothing to do with it, I just coincidentally decided it that day. It turned out that I had so much scar tissue built up in my arms that it was preventing the full absorption of my insulin dosage. So 30 units in the arm meant I absorbed only 10-15% of that. When I switched to my legs I was getting the full amount which was way more than my body needed (now that I am on the pump my insulin to BG ratio is 1:50 so you can imagine what 30 units did to me).
That was my initial reaction to your title, however you really haven’t been diabetic long enough to have so much scar tissue (I wouldn’t think anyway). It definitely is a possibility though.
What I am trying to say is that you shouldn’t depend on miracles. Behind each one is a perfectly reasonable and logical explanation. You just have to know where to look. For you for example it might not be scar tissue preventing the absorption but the area you are using. If you have switched sites lately that might be your answer.
I hope you find the answer to your situation and wish you the best.
sigh I don’t want to, but I guess your example is reason enough for me to switch sites. I have used my legs for about two years- I cover the whole thigh area, all the way around to the sides and upper hipbone region. I guess I’ll try injecting in my butt, but it hurts really bad! But, (haha- no pun intended) my “resistance” as my endo put it, might be due to the scar tissue. I have thought about this, and have switched sites before with no results, but… maybe it’ll work now. I’ll try again. (sigh) even tho I dont want to.
Wow, that is a really interesting thought. Since my diagnosis I’ve been taking Lantus in my thighs, try to alternate which one every day. Maybe I will see what happens if I vary it.
As far as miracles go, do not worry, I don’t really think I’m cured! In fact, I am surprised that most of the responses here seem to think what is happening to me is so great. I don’t mean to sound ungrateful, but it has been extremely scary and stressful dealing with such dramatic change after over a year in a half of really steady doses and BS levels.
I understand everyone is different, but I like knowing as much as possible about what is going on with my body and not having answers from my doc right now freaks me out.
Honeymooning periods will come and go. Don’t worry about how much you are taking, as much as making sure the numbers are in a good range for you. It is not unheard of for people to need little to no long lasting for periods of time, while honeymooning. You still have diabetes, but it is not weird at all to need less insulin from time to time. This is part of the reason D stinks so much is that the only thing you can count on is change.
that’s not really a lot of carbs for a type one who isn’t insulin resistant and who is active. that seems to be the average amount i’ve heard from many type one’s on this site. that’s how many i eat in a day easily.
Yes, I agree. If you figure around 65 grams per meal (3 meals per day) that would put you at 195 carbs right there- plus snacks throughout the day would easily put you at 250. Sounds normal to me, too.
Honeymoon periods can happen in spurts, so it’s great that you’re testing a lot to keep on top of things. With good control, honeymooning can last a good while. I’d wager this is what’s happening & odd that your endo didn’t suggest this.
I know someone who’s been diabetic for over 40 years. He had to take gamma globulin shots for another problem & was crashing from lows. Despite there being no medical evidence to suggest that gamma globulin increases insulin sensitivity, his immunologist believed that it somehow gave his beta cells a boost. You’d think after 40 years of diabetes that he wouldn’t have any beta cells to boost! It ended when the gamma globulin injections stopped, but he took nothing but low basal doses during this period. His story gives me hope that something will be uncovered that will recharge our betas.
Agree with Emmy that eating this many carbs is really pushing things. ADA guidelines are too high to begin with & you’re eating more than this. Lowering your carb intake would help extend the wonderful phase you’re having. And if it suddenly ends (hope not!), you won’t be going sky high from too many carbs.
I have the same story I was diagnosed at age 20 nobody could tell me weather it was type 1 or 2 (its been over a year and still no answer) I have obviously been reading a lot about it, and I think I have 1.5 as well… its between the two i heard it was more like type 2 but treated more like type 1. who knows… i guess as long as your sugars are okay and your mainting yourself your in the clear. Let me know if you find out anything =) good luck
I am LABELED as a type-2, IDDM and DM2 insulin required…go figure.
Like you Steph, I also have had to be treated as if I were a type-1 despite the t-2 label…
For the most part, I am not very sensitive to different foods like typical T-2s. I am prone to muscle wasting like a T-1 and have ahd several mild DKA episodes. The last one 2+ years ago forced me to return to doctoring, instead of just winging it with OTC insulins N & R. After over a year I tried to lower my insulin doses, small change with care, to no avail. After about 18 or so months I tried again and was able to lower my doses a little. But when I get a spike they are higher, instead of say 170s before the next meal I hit the 290s…ouch!
I have psorasis, not caused by autoimmune, but my dermatologist says it is AFFECTED by my autoimmune response level. It does seem to get better and worse in cycles, plus I think, not tested it out, like in sync with my diabetes modes.
I have never, to my knowledge, been tested for antibodies response, I am almost afraid to.
I was taking 17u + 17u (am/pm) but now able to do well with 14u + 14u. I KNOW the 17u + 17u was accurate when I got my BASAL tested down and accurate, very accurate, that dose level would keep me a little under 100FBS and held for hours no food or exercise. I also accurately tested my carb ratio after getting my BASAL stable & good, it was 1:10 or 1u per 10grams of carbs, now I can get away with 1:12 or even 1:15 sometimes.
NORMALly…me “normal”?, they say a T-2 form is progressive, but in my case I go from a total dependent mode to a less but still dependent mode…WIERD…I know! However this theory (for lack fo a better word) FITS me…
(&( GOMER maybe I am not as wierd afterall? (that I thought)
The ADA recommends 180g per day for Type 1s. But that’s still a lot, in my opinion, and I’m a type 1. I don’t do the Bernstein low carb thing, but I don’t take in 150 per day.
I used my lower belly for infusion sets for 8 years. My CDE made me stop using that area and now, when I cheat and use it, sure enough, my average BG goes up about 30-40 pts. Last time I called into my endo’s office about unexplained highs, that was their first question: “Are you using your lower abdomen again?” I moved it and the numbers came back down. It’s worth trying. I’ve had success in new areas over the last year.
My situation was pretty similar. I was diagnosed about a year ago at 23. At first my doctor put me on 18 units of lantus. Long story short, I lowered it and lowered it until I got all the way down to 3, about two months later. Since then, I’ve been between 3 and 10, right now I’m back down to 3. And I tell you what, that 3 is pushing it. My blood sugar is constantly going down just a little bit. I might try doing 2.
Anyway, I don’t think that it’s reversed. I think it’s the result of my low carb whole foods diet and exercise, and the fact that I caught it fairly early. I’m looking forward to a c-peptide test next month to see if my pancreas is still kickin.
if i ate 150 carbs a day i would starve. i’m in my weight range and exercise regularly. i also work a very active job. if i didn’t eat what i did i’d have to say i would be starving my body of food i need.
But, (haha- no pun intended) my “resistance” as my endo put it, might be due to the scar tissue. I have thought about this, and have switched sites before with no results, but… maybe it’ll work now. I’ll try again. (sigh) even tho I dont want to.