He's had diabetes for 10 years and no doctor ever suggested he get a simple meter and check his BG at least once a day? I have been on oral meds for the same time period Metformin and other than having to lose some weight again, I am doing ok, check maybe once per day or once every other day. My son has Type one on a pump and doing fine, its a scary disease and I wish you all the best. He is checking with meter now correct? Is he stuck using insulin for good now? We will be thinking of you both.
Hi Lunchladyliz,
you're very welcome :) DKA is a horrible thing to live through, but the important thing is he survived it and he will get better in time. My vision improved in 2 months or so gradually and I wore reading glasses of varying strengths during that time as well as rx glasses on and off. my rx changed at least twice in that time but I found the reading glasses helped me the most except initially I really needed graduated lenses to be able to see at all. It hasn't gone back completely to what it was and it fluctuates when my bg does, but it's greatly improved and I have also adjusted to it. Prior to being put on iv insulin my vision was such that I needed no glasses due to the high bg I think. He should go to a retinologist asap to make sure there is no damage there. Otherwise it is probably from glucose in the lenses during dka and it will gradually come out, that is what they told me anyway. If he had higher bg for a long period even more important to get that exam with a good doctor. I definitely would supplement potassium if his doc thinks this is a good idea. Maybe it will help his pain. Don't worry, things will get better in time :)
I was in DKA in 2006. I was sore more in the abdominal area and had other residual issues that lasted for about eight months afterwards.
Hi Liz: I think it takes a long time to recover from DKA, especially as an adult. I was diagnosed with Type 1 at age 35, in DKA, and it took about 10 months of good blood sugar control to be largely back to my "old self." In that time, I had lots of pain, of course bad vision for awhile, extreme fatigue at times, etc. I did not have the skin tenderness/soreness. Your husband had very high blood sugar for a while. I absolutely feared I would never feel good again, but 10 months later I did. It is hard to be patient, but I'd give it more time.
Thanks for your reply. It helps to form some kind of perspective on a time frame for recovery for him. I know it took a long time to get to dka and it is going to take a bit of time to undo some of the damage done in that time. I appreciate your response. This forum has helped us so much already!!!!
Thanks for your response Jonah. He is entering his fourth month so we may have a ways to go...but we are making progress for sure. Much prayer and much research and encouragement go a long way. Thanks for the insight!!!!!
I also had a 3 day stint in MICU for DKA in 2004. This might seem like a weird question but does your husband sleep on his back or his side? I too have had pain in my sternum area, where it feels like it's broke and was very tender to touch. It turned out to be strain on all the connecting cartilage between my sternum and ribs from sleeping on my side. Might be worth looking into... I don't have neuropathy symptoms as of yet, although I'm sure I will get my turn.
yes, as sarahrah stated, this is what happens when blood sugars are high and start to come down, it's intermittent neuropathy...all the nerves, muscles, etc...are starting to refire. this happened to me too, after DKA and blood sugars stabilizing. My endo told me, "This will get worse before it gets better." It's also noted on insulin vials, intermittent neuropathy as a side effect. It is part of the healing process, his vision may get worse too before it gets better. If I run my blood sugars high for even a short time, I will cramp up all over again, until they stabilize. The body wants to get rid of the excessive glucose. I agree to to bring his BG's down slowly. That's what they did with me. Also, I continued for a while to have low potassium and dehydration, which resulted in a number of ER visits, this can result in muscle pain, cramps. He may need to have his electrolytes (sp?) checked.
I'm so sorry to hear of your husband's Dx...:(
I will definitely mention to him about that sleeping position. He sleeps on his side alot but on his back also. It is crazy what sugar can do to our bodies. Thanks so much.
Thanks Sarah. We go for blood work on July 17th. So...we are anxiously waiting to see what his numbers will look like. There has been no bloodwork since his hospital stay. They said they wanted his body to level out first. However, it is a little frustrating because we basically are trying to find fixes on our own. Four months is a long time to wait for answers. We have seen some relief after starting some vitamins and ALA and primrose oil. Thanks to this forum. His sugars are remaining very good so far. Thanks so much for your time and insight.
This seems very odd to me. you can make appointments with his doctors if you're having issues and not wait that long - 4 months, if he's not feeling well, have him go back. I saw my endo every week after Dx and after DKA, every week...and he'd also call me on the phone. at times, when I didn't feel strong enough to even get to his office he'd call me, personally, and tell me he wanted me to make my appointments. I'm glad his BG's are good. How much basal - bolus is he using, is he having a 'honeymoon' period? How many times a day is he testing?
I realize you're trying to help, which is great but it might be beneficial to have your husband active on TuD?
Basal-bolus??? He tests before each meal and takes insulin with meals. He then takes a long acting insulin in the evenings. He is doing very good at counting carbs and keeping track of what he eats and varying activities that can alter sugar levels. The sugar regulation seems to be the easy part...it is the damage that dka did to his body that is the hard part. But...it took time to get where we are...it will take time to correct what we can. He is not currently on TuD...but he reads my posts and responses. I tell him he should join...but he has not as of yet. But..the email notifies of replies so he reads them. I am glad of that.
As for the Dr. visits. He came home on March 7th from the hospital, saw a primary care phy. on Tuesday and nothing was done except referral to endo. Originally, there was no opening for the endo until June. I called almost daily and finally, due to a cancellation...he was seen April 27th. He was put on cymbalta for neuropathy and scheduled for bloodwork July 17th. In the meantime, I called and requested a referral for the neuro. because his neuropathy was so painful. Thus...the appt in July. Endo's are scarce here so it takes a long time to get in. The neuro. was not the same situation. So, here we are. Thanks for your time!
Yeah, good Endos are hard to see, they're booked out long in advance. Didn't someone at the hopsital after DKA refer him?
Basal - long acting (lantus or levemir)
Bolus- short acting (novolog, humalog, apidra)
How much long acting (lantus) is he using right now? What's his I:CR?
IMO and many others, he needs to test his blood sugars, especially now, at least 10 times per day, more if blood sugars are fluctuating. The testing you're describing before meals only is usually prescribed for type 2's on oral meds not for a type 1, newly diagnosed, especially, dependent on insulin. If he's not testing 2 hours ppl (after meals) how do you know if the insulin he bolused is correct? We use 140 2 hours after meals (I use 2 hours after last bite) as a target number. If he's not testing before bed and when he wakes up how are you determing if his lantus - basal and fasting numbers are good? What are you referring to as 'good' in terms of his control, numbers? I guess he hasn't had an A1C since Dx? Lots and lots to learn. As most have noted, it takes a long time to 'feel better' and heal again after DKA and very high blood sugars. Every nerve, cell, muscle, organ, etc..in our bodies is effected by high blood sugars, everything.
TEST:
Upon wake up - fasting
before a meal (each meal)
2 hours after meal - each meal (or sooner if going low or too high)
before bed
working out
driving
highs, lows, etc...
Woah....brain overload. First, he is on lantus and novolog. He is on a sliding scale. He left the hospital with instructions to test before each meal and adjust insulin accordingly. He was told that since he was so high, 150 to 200 was good range.However, he is usually well under 150, like 110 to 120. The hospital referred him to the primary care dr. On that visit is when he was referred to endo. The endo did not change any instructions given to us. Interesting too....paperwork says type 2 sometimes but endo indicated type 1. We were not clear on what type we are...i say we...cause this is truly a team effort. This website and the internet and books have been my source for learning about our new life. No A1C checked, should be July 17th when the endo does bloodwork. Thats when they had said that they wanted him to level out. In the moment...you just agree and say ok...puzzled...overwhelmed. Then the more we look back, we are so confused as to why more is not done...why does everything wait months to figure out??? We will see the endo the 17th...I suppose we will discuss if he needs more testing or not??? Thanks for alot to think about and figure out. This is such a complex disease but by golly we are gonna get it nailed down. Appreciate your insight!!
Hi Liz: I know this is a lot of information overload! I will try to keep it simple. I know that Marie B recommended my blog post on top ten tips for the newly diagnosed person with adult-onset Type 1 diabetes. In it, I recommend the book by Gary Scheiner "Think Like a Pancreas." Do you have that book yet? You mentioned "sliding scale" for insulin, which is an archaic technique; I would suggest a visit with a good CDE (Certified Diabetes Educator) who can help with the insulin regime. "Think Like a Pancreas" has great information on basal/bolus insulin regimes. Again, I know that this is so much information, but good for you for coming here and asking questions and getting lots of good feedback.
Hi Liz
When I was first diagnosed with blood sugars in the 20's (over 360 on the American scale) I also felt terrible, and it lasted a while. Some of my symptoms were floating spots of light in my vision, vomiting, very blurry vision, dizziness, ringing in my ears, night sweats, fatigue, heavy breathing, metallic taste in my mouth, and of course the excessive thirst and urination. Some went away pretty quickly, like the vomiting and night sweats. But others took months, like the vision and dizziness.
I didn't have pain in my chest then, but did have swelling and pain in that area when I figured it would be a good idea to try eating KFC. I figured that maybe I had induced pancreatitis.
It will get better, but some of these symptoms will take months to clear up. The ringing in my ears drove me nuts, particularly when I tried a couple of yoga sessions and nearly landed on the floor! But THEY DID GO AWAY.