A1C

[lmgr]

Hi everyone...my 16 year old son who has type 1 diabetes had his normal 3 month check-up today; his A1C level was up again - it has gone up the past 2 check-ups - today it was 8.18.  I know they say it should be 7.0 or below and his doctor was not real happy - but then he rarely is happy with many things!  He constantly makes comments that my son may not be taking his insulin shots like he should be - even after I told him that I see my son taking his shots and I believe him when he tells me he is taking them as he should when he's not with me - I have always been able to tell when he is lying!  

Anyway, any comments from anyone who has experience in their A1C level being up a bit is appreciated.  Also, is 8.18 considered dangerously high or anything??

Thanks!

[JDRF-Team-cg]

Hi Imgr,
I am a Type 1 diabetic who was diagnosed at the age of 14. I am not a doctor but I can only share my own personal experiences with you and hope it gives you some insight. My first concern is your opinion of your sons doctor. It seems that you do not care for his temperament and therefore may not trust his judgment. Perhaps your son feels the same way. You may want to look into a different specialist (Endocrinologist). Again this is just reflecting on my own experience with a doctor who always seemed to find that I was not doing what I needed to but offered no suggestions or moral support on how to do better. Secondly as a teenager it is very difficult to maintain a very controlled life style. It is hard enough for adults but more so for teens. I myself always told my mother that I was doing everything I was supposed to but at school or hanging out with friends the temptations were very high. I did find myself eating what I was not supposed to. At one point I had an A1C of 11.0. I am not saying your son is deliberately lying but he may be going through the denial phase of the disease. It is hard to accept and is very common to be defiant or rebellious. There are many support groups to help with this. On this website you can email for information about local chapters of JDRF who can help you. It is merely a suggestion. Lastly I would be concerned but not alarmed at the A1C results. You obviously want to get them into the normal 7.0 or lower range. Maybe your son can talk to a doctor who works with insulin pumps. They do make control much easier, I wear one myself. But it has to be right for each person and that is where your doctor can help. It still takes work and being responsible for managing the disease. You do not mention how long your son has had diabetes but his insulin dose may need to be changed due his body changing at very rapid rates during this age period. Again I think you may need to choose a doctor who can help you with all these issues.
Hope this eased some of your concerns.
Carolyn

[JDRF-Team-LRS]

I'm another volunteer and agree with CG here and also not a medical professional

I went thru most of my teen years as a diabetic "in the dark ages" of the 1970s.  My niece -- now in her early 20s -- went thru a very tumultuous time with diabetes in her teens.

The point is that the issues leading to our caring -- or not caring -- to maintain control have nothing to do with disease.  They are emotional and psychological issues, in my opinion.  To maintain a healthy approach requires supportive family (as you son seems to have) *and* a supportive medical team *and* often a supportive social network that many diabetic teens lack.  That is where connecting up with an organization like JDRF in your community can help.  In that arena, teens socialize as teens who can commiserate with them completely.

While an a1c of 8.18 is not what our docs would have us strive for, try to keep in mind that managing diabetes requires marathon skills -- not sprint skills.  Coping at 8.2 for a while can be far better in the long run than driving a young person into despair for not being better able to "control" this disease better.  Some stuff we can control, much else is beyond human control.  Building your son's confidence and his COURAGE to ask for help as needed is important for him to develop his long-term (marathon) independent skills.

I also agree with CG that finding an endo who can work with your son (and not against him) is important.  SUre, endos see plenty of defiant teens, but frankly 8.2 does not sound like defiance to me.  It sounds like a teenager testing limits.

[JDRF-Team-JW]

I'm a volunteer who has been living with diabetes for 11 years. I was diagnosed at the age of 18 so I can sympathize with your son as it is a difficult age to be dealing with such a life altering condition. I whole-heartedly agree with the above comments. I think they're very insightful. My experience has been similar. My A1C's have only recently came down to below 7.0, and that is not because I wasn't concerned with my condition. In fact I thought I was doing everything I possibly could to control my diabetes and the numbers were still high. My highest A1C was probably around 10.0. Now it's 6.7 and I have to tell you what really helped was going on the pump last year. I was very reluctant to try it, ignored my endo's plea for years, while doing research and asking other insulin pumpers what it's really like to be on this thing. And then I decided to try it, thinking that if I don't like it I'll go back to injections. Well I haven't gone back and I don't see myself ever going back. I'm telling you this because, honestly, despite my best efforts throughout the years, the pump is really what helped me finally gain control.

As for your son's doctor's comments -I understand they're frustrating. I absolutely hated some of my docs who have treated me over the years. The reason why, I think, some doctors make comments of that sort is because diabetes is really a very difficult condition to control and a very individual one. The doctors can only do so much but it is really up to the patient to follow through and do what they're supposed to. However, it is also a disease of trial and error, as well as constantly changing one, since everything we do and any shifts in our lifestyles contribute to changes in our glucose level and overall health. What I found out is that with this disease you are constantly learning new things. Not only about new advances but also about yourself, your body and how this disease affects you. As much as I thought I knew even a couple of years ago I'm amazed at how much more I'm aware of today, which helps me keep my sugars steady. You also have to remember that, for a teenager, managing this disease is extremely difficult, if not impossible in some cases. Yes, your son should strive to obtain the best possible results but he should also be able to live his life and expect things to not always be perfect. It is also very important that you find a specialist -an endocrinologist that can also put together an entire diabetes team for your son, complete with a certified diabetes educator (my nurse is fabulous and I usally go to her for the minor issues, instead of my endo, which takes the pressure off), as well as a nutritionist. Many of these professionals are diabetics themselves. My nutritionist is one and that helps when I ask her questions because she knows exactly the frustrations I'm going through since she usually experiences them herself.

Please look into getting a specialist for your son, find out about insulin pumps, and check out support groups for diabetics (as mentioned by CG above) that could help your son cope with his condition and expose him to his peers who are going through the same frustrations.

Good luck and let us know how things turn out!

[joe29]

While a A1c of 8.1 is slightly out of range its not that bad. Your son could be less than honest about taking his shots all the time, but at 16 years of age Id say thats pretty common. He could be in denial about his diabetes which is again NORMAL.

Its so hard to keep your sugar levels perfect every hour of every day, its mentally and physically tough. Add in the fact your son is 16 years old and hes probably got some raging hormones which will make thing twice as hard.

It sounds like you dont like his doctor much, but more important it sounds like your son dosnt like hime either. No doctor should critize your son for having a A1c of 8.1, its there job to HELP,  not critize.

Try finding a younger Doctor, I refuse to have a Endo who has been in the same job for 35 years because they just dont seem to care anymore. I found a Endo who is only a couple of years older than myself(29) who is great, she NEVER critizes me and she always praising me even if my A1c isnt great. Someone younger might relate better to your son. Dont be to hard on your son, diabetes is a tough disease to live with and we all have our bad days. See if you can get him to check out this site or the American diabetes Assocation web site, the message board is full of great people offering advice and plenty of young posters. Just stay positive and try and keep your son thinking positive....

[JeffTrumpet]

I completely agree with the others. I have had Diabetes since I was 11 months old, and there will be some loss of control during the teenage years. The highest A1c I ever had was a 9, but I learned how to control my levels and have success managing this disease. I am graduating from college this year, and for the last six years my A1c has stayed at a constant level of 5.7. He will learn how to manage the disease better, and I am sure he will be fine. One comment I have is that for me in my teens, it took the insulin longer to work than it had before. It is very easy to have post meal highs if the insulin is given just ten or fifteen minutes to late. Possibly suggest giving insulin at the beginning of meals or even slightly before, and I think it could easily help prevent some of these higher levels.
Jeff

[lmgr]

Wow...thank you all so much for your responses.  It helps tremendously having your support.  Everything that has been said makes perfect sense and I am definitely going to recommend this site to my son (Chris).  He was diagnosed at age 12 and has never really cared for his endo.  I suggested staying with this Dr. as he seemed to really be thorough and also always insisted that Chris know how to care for himself.  His comments lately have me concerned though and my son was extremely upset after this last visit.  I think I will look into someone else.

Again, thank you all for your response.  It's so hard watching your child go through this and also seeing him becoming more independent but wanting to take care of him!  I sincerely appreciate your support here.

[Human Pin Cushion]

It's funny, the problems of this teen can be mirrored in all of our experiences, at any age.  After taking insulin of various types for over 40 years now, I find it's more work as we get older...due to the fact that I think we dig for more info as we get older.  And, we're willing to try new things such as the pumps and different insulins.  (There is a new 24 hour coming out soon)  

I only learned (on this forum) that others shared the same PMS changes in insulin requirements as I did.  Gee, it took me several decades to actually hear someone else agree with me?  

My point, you son will eventually find his own route with this disease.  He is probably doing better than most of us "older" people who went through the teens on the older insulins and no meters.  I find it hard to believe I lived through elementary school, junior high (the gym teachers made me run extra laps becuase I was diabetic, regardless of what my glucose might have been) and high school.  Even college, the meters were a vague development and were the size of a cash register!  Finally on my own, I searched for a endocrinolgist in my new career city and still search as I move around the country.

I've just gone through a month of adding considerably to my Lantus dosage.  I was just told yesterday at an appointment that I was "out of control" at 7.8.  Yes, high for me, but I really drove home feeling like I was a "bad teenager"...today, I feel better and always feel better after visiting this forum.

[lmgr]

I think I can understand what you mean by "finding his own route"...he tells me a lot "mom, this is MY disease, I should be able to handle it my way"...but I worry that "his" way may not always be the best way.  Maybe I am expecting him to handle this disease perfectly..but should I expect anything less??  I hear so often now people who have lost their sight, lost a leg, etc because of this - I talk to my son about it and his response is, "whatever is going to happen will happen and there's nothing I can do to stop it".

He also says that at times he can "feel" what his blood sugar is..I've tested him on at times - asked him what he felt his bs is then had him check it....at times he was close but other times he was not.

Geez ...this is so hard - and I don't want to make it any harder on him - but I want to know so bad that everything that CAN be done, IS being done.

[Plaxibo]

I remember the first Doctor I had when I came down with type 1 diabetes never really cared.  He never showed concern and when I was concerned he made me feel like I was insane or something. And the thing is I had reason to be concerned.  My A1C was almost 14.  I eventually switched doctors and now my A1C ranges from 7.5 to 9.5.  That may still be bad but just think what average blood sugars you need for a A1C of 14.  I am doing great when compared with that.

Get a new doctor.  It will help.

Oh almost forgot.  I had a endo once who made me feel like I deserved to die because of my control.  She didn't say I would die if I didn't improve.  She said I deserved to die.  Pretty bad huh.    

Trusting your Doctor is very important.  Just as important as checking your blood sugars regularly and eating right.  At least IMO it is.

Mark B.