Is it possible to have had diabetes for 2 years before diagnosis?

(heather) #1

My daughter was diagnosed with T1D 2 months ago at age 18. we found out she had it because she got very sick and was hospitalized with DKA.

looking back, we realize that for 2 years she has been extremely thirsty and very skinny. about 2 years ago she suddenly lost lots of weight without going on any diet and with eating anything she wanted to. she was also crazy thirsty- drinking bottles and bottles of water every day.
the doctors in the hospital told us that it is impossible for her to have had it for 2 years without knowing- they said most people only have it for 2 months until they are diagnosed. but to us, it really seems like she has had it for 2 years. does anyone else have experience with this??? do you know if this is even possible?

i hope that it doesn’t mean that she was causing damage to her body for 2 years because of untreated high sugar… is it even possible to have high sugar for so long without getting sick?

we were thinking that maybe the fact that she exercised a lot and drank a lot helped regulate her sugar so that she wasn’t symptomatic for 2 years…any insight on this topic would be appreciated.

thanks so much!

(Dennis J. Dacey, pwD) #2

Hi Heather @hewhwew1, just about anything is possible. And your daughter may not be unique.

In retrospect as an active 14 and 15 year old, in the 1950’s anyone in my area knew the word “diabetes”, I had all the symptoms but kept denying that anything was wrong with me and kept going until I was unable to get myself out of bed on my 16th birthday. It is possible that your daughter had an extended “honeymoon” period and has just now reached the point where insulin is a necessity - the honeymoon is frequently noticed after a person begins using insulin and then needs to reduce doses significantly.

As for “damage” that may have been caused, only time and a skilled endocrinologist will determine that. One of natures ways for mitigating hyperglycemia, dangerously high BGL, is by hydration and activity. But heavy exercising while body glucose levels are very high can be dangerous.

(Andy) #3

When I was diagnosed, I tried to go back in my mind to when I started having some of the symptoms associated with becoming T1.

Just prior to diagnosis (maybe 2-3 months) I was having pretty much every symptom in the book so I pretty much was able to self diagnose myself. (I think the only surprised person in the room was my MD)
As well as I can remember, it was probably at least 2 years of sporadic “weird feeliings” that would come and go. Weight loss? yeah a bit…but then it would stop. Weakness? yeah, a bit… but then it would stop. Blurry vision? yeah, sometimes…

I didn’t really stand up and take notice until I was having all the symptoms at the same time and they weren’t stopping like they used to but increasing in intensity instead.

(Zachary) #4

I’m pretty sure I started my honeymoon phase a year or two before my actual diagnosis.

I had some kidney problems as an adolescent and figured it was some lingering symptoms. Come to find out, I had full blown type 1. I don’t know how I made it as far as I did. I think back and realize that the days of being super tired and sick were probably from an imbalance of glucose.

(Susie) #5

Many have honeymoon phases that fluctuate so that could be an explanation as well. At this point though we can’t change the past so just keep an A1C below 6.5 and she will do great! Attitude is key.

(Nick) #6

I would say anything is possible my son showed signs two years before his actual DKA and we were wondering wow he’s just this great either and if he eats anything to Rich or sugary he throws up. But then he was hospitalized

(Nick) #7

Eater, sorry That’s what I was trying to say

(Charles) #8

I know this nay sound crazy, but… after my diagnosis, I traveled back looking for signs, as I think everyone does. I’m 57 and I was diagnosed 4 yrs ago. I can see issues on and off for many yrs. I can Romberg isolated issues when I was 10 or 11. Drs say I’m nuts could never happen, but I think it did.

I also had a coworker tell me he made it thru basic and was in the Army for 2 yrs before they diagnosed him withT1D.

I think anything is possible, just depends on situation and your body etc.

(Charles) #9

Oh yeah, my pcp, and I went over tests just two months ago. He was shocked, told me so too, because based on my labs he would never suspect me being diabetic at all. Even though I have been diagnosed T1D for 4 yrs prior.
Another reason to say anything goes!

(LizzieT1D) #10

Oh I believe it! I, too, went into a diabetic coma the day after my 16th birthday in 1975. Looking back, I had all the symptoms: excessive thirst, unable to control my bladder, r-e-a-l-l-y skinny. In fact, I remember going to my GP at age 15 because my knees were really killing me. He diagnosed me with arthritis (he didn’t notice the other symptoms either). Turns out it was neuropathy. But no one in my family has diabetes so we were unaware of the symptoms.

As Sqduarte wrote, what matters now is her attitude (& yours!), treatment and her relationship with her endo. I changed endo’s about 3 times before I finally found one who said I needed to fit diabetes into my lifestyle, not the other way around. That’s an important message for a teenager to hear given you’re thinking about how your life is going to change with this disease! With the technology advances we have today, her outlook is great!

Good luck with your daughter!!

(Elease) #11

I love this question and I appreciate all the answers. I also think anything is possible. Everyone’s body is different and if she generally didn’t overeat especially carbs without exercise then it’d be hard to know. I appreciate you suggesting this possibility because I also noticed my son acting different the past 1-2 years. Something in his body was amiss. Something that stood out was his sensitivity to sugar items and chocolate. I understand young kids get hyper with those items, but my son got mean and highly irritable. It was a constant argument with my husband not to give him those items because of his behavior. My son was diagnosed at age 4 years, 3 months and I remember how irritable he was on his 3rd birthday which wasn’t like him. I remember him telling me his stomach hurt off and on for many months. His pain often went away with excessive water so we didn’t think too much of it. We figured he was dehydrated from being active and not drinking enough water during the day. Anyways, hang in there. It’s not easy, but I’m so immensely grateful for the technology. My son uses a Dexcom G6 which measures his BG 288 times a day (every 5 minutes) > keep in mind it’s 10 minutes behind but is highly dependable in our day to day life. My son also has the Omnipod Insulin Pump which for the most part is great (it’s most effective day 1 and day 2 and loses its effectiveness on day 3 on many occasions). Anyways, wishing your daughter the best and reach out to your community for support. We can’t get through this world without each other. Take care, Elease and Miguel Ayala (parents of Chase, diagnosed November 2, 2018).

(Linda) #12

short answer is YES of course!!! Dr’s don’t know everything, although they do try to hypothesize. I would bet many of us were developing T1D many years before symptoms. 1. they do not check kids BS regularly like they do with adults. Unless there is a good reason to. So they would not see a progression. 2. Although we do have some studies to show what may be going on in our bodies, no one REALLY knows exactly what is happening. We know the end result, but not how we get there. I do believe we can be suffering from an autoimmune disease years before we see any strong evidence. I know if I look back, I had many of the signs for many years. My destruction must have been slower than others. Not knowing what the Autoimmune triggers are, how would we know when this started. Also, I have been a low carb eater for 20+ years. I was always a healthy person, and did not see a need to see a Doc for regular checkups until things got really bad. Even so, I was lucky I got diagnosed when I did, I still live in honeymoon phase for the last 3 years. That being said, I do see a progression in my disease as I watch my basal needs increase. I started 3 years ago with needing less than 4 U of basal insulin to now needing 8 U. Still low…I hope I can continue at this slow rate. All the best! One tip! Of all the terminal illnesses we could encounter, this is the most manageable! Chin up and carry on, all will be fine!