Everything I thought I knew about D......is nothing!

Ok, so 9 mo's ago I had thryoid surgery to have the left side removed due to a growth developing on it(which made it the size of a golfball) which was found out later that it is throyid cancer. Was told by surgeon(ear, nose, throat dr.) that there would be no changes to me & it wouldn't affect my D, but since this surgery in June I have had nothing but problems. The 1st thing I noticed is that my internal warning system for low's no longer worked and now all I get is a headache(so bad I think someone is trying to drill into the back of my head) and a very nauseaded stomach and neither of these systoms happen until my BG is in the 1 range.

I've been a T1 for 14 yrs now & in that time I've never been rushed to the er or had to have ems called for me EVER, but since I've had the surgery I've had to be rushed to the ER 4 times or I've had to leave work b/c a low & left to have some time to recoup 5 times or I was feeling like BG was high and when I tested my BG was 3 or lower. The last low that I had at work ems sent 2 ambulances for me, the next day my family dr put me on short term disability until we could figure out why all of these lows are happening and was that I can't drive or take the bus by myself & I wasn't to go out by myself or even go for a walk my dog by myself so I've been riding my couch for the past 1 mo 1 week & I'm so bored and getting depressed everytime I think about all of these things.

So 2 weeks ago I saw a new endo that lowered my basal rate from 1.05 u/h to 0.85 u/h & had a meeting today with a new pump trainer to help with seeing were changes needed to be made with my other #'s & my BG target for my pump from 5-7mmol/l to 6-7 mmol/l & the pump trainer wants me to start using temp basal rates. For the past 6 yrs that I've been using a pump I've never used temp basal rates!! This is embarassing to say that they were never explained to me & the reason to use them wasn't made aware to me. So now this pump trainer wants me to use 2 temp basal rates so the 1st temp basal rate is set to reduce my u/h 50% for vigours activity & the 2nd rate is to reduce my u/h 30% when doing lite activity(non strenous housework, 20 min dog walks). I guess my question is why are temp basal's so important ? I just thought during strenous activity we should be taking off our pumps then after the activity connect & test as usual or am I ill educated on the subject?????

I guess that I'm trying to gather as much info about to help me get back to me cause I can't stand the way I've been feeling, like "I'm sick but not sick" and it feels like for all of these yrs everything I thought I knew about D & T1 wasn't near enough for me to take proper care of myself so I question how I have been taking care of my D?????????

I have had a pump for the past 7 years.  I take my pump off during vigorous exercise and then set a temp. basal rate for the next 12 hours as depending on the muscles you use your bs's can continue to go low.  sounds like the surgery has changed your hormones a bit which can affect the bs's as well.  Diabetes is day to day...so you always have to be ready to adjust!!!

I am finding out after only a short time with my son on the pump that you have to read read read and become informed. My family went to am JDRF family retreat about a month ago and we were with parents of pumpers who have been pumping for up to 10 years. Some of the information I knew they did not. Sometimes it just gets lost while your leaning everything else, sometimes you pick it up on this site (I did not know about the hottubs and Humolog) and sometimes you will read it in a book or get it from a website. 

My son has had a few ER visits and I have found that just because they are MD's doesn't mean they are totally familiar with all facets of diabetes. Like anything else they get rusty. The hospital my son was diagnosed would not let him use the spring loaded infusion kits for no other reason than they never did before. So here is a somewhat better innovaton but no one wanted to make the decison ot learn about them. In the meantime the rest of the diabetic are using them and you have a hospital with its personnel unaware of how to train on them. I have found the same for advanced features of the Ping.

So I go in to any pediatrician and tell them what I need. I ask questions about temp basal rates because my sons's pump has it on there.  I know in 10 years there will be stuff I should know and don't.  From talking to the parents at the retreat many said they had passed a point where there child has had diabetes for 6 or 7 years and they just figured they should know it.

"Temp basal rates are used for periods when you know from experience that you will need more or less basal insulin. A high temp basal might be used when you are under more stress or for other reasons need more insulin. A temp basal reduction may be needed for exercise  or at night after a long day of activity to prevent a night low. Use of a temp basal rate is also convenient for testing higher or lower basal rates to see how they peform before you program them as your regular basal rates." *

* From Pumping Insulin by John Walsh

Don't feel bad. The whole temp rate boggles my mind.

Oh, and I have had T1 for going on 28-29 years.

I use temp rates a lot. I use them when i'm running high because of adrenaline, when i'm running low because of exercise, when i'm sick, when i'm going longer than usual between meals... I usually run -20 or -30%, unless i'm doing long distance running with my site in my thigh, and then i run -80%. It's a huge guessing game, and i test a whole lot, but temp basals can help keep control. 


if you can maintain good control when taking your pump off for exercise, do it. I end up spiking after exercise, so i leave mine on. 

What does your new endo think about the changes in your numbers since the thyroid surgery? Does he think it's hormonal changes that have make your sugars harder to control? Or does he just think the changes have changed your insulin needs but your control should be the same?

Do you know if you could try to get a cgm.  Then you would be able to see the trends and might get alerted to your lows from its alarms.  Just an idea.