crazy sugars and a little frightened

[rubyroselee]

Hi,

I haven't been diagnosed with CFRD yet, but I'm pretty sure I've got something going on. Most mornings I deal with hypoglycemia 1-1/2 hrs after breakfast, so I try very hard to eat a low-sugar, high-protein meal first thing and then also eat a second breakfast in between that and lunch. That seems to help. However, today, I had a coffee before lunch with sweetened cream and that almost caused me to go to the ER. My sugars dropped very quickly (or at least I thought it was hypoglycemia), so I ate some candies and got a chicken wrap and apple juice for lunch. Right after that I got EXTREMELY tired, short of breath, sort of loopy feeling. I didn't know what was going on until I looked up the symptoms of hyperglycemia and it sounded the same. Ugh. I almost went to the ER at work (I work at a hospital). I was so scared.

I brought this up to my doctor last appointment that my sugars were out of control, but he didn't do anything. I left him a message this afternoon with the nurse, but never heard back and I won't until next week I'm sure. I'm really nervous to eat anything at this point since I know my sugars are all sorts of up and down.

So my question is, how did you know when your sugars were bad enough to need treatment with insulin? Did things get really bad? Or does your clinic monitor you with a regular OGTT?

I just don't want to wait to long to get treated. And I don't want to get bad enough where I end up in the ER.

I guess I'm just frustrated because my doctor blew me off when I told him about my stomach pains and I ended up in the ER with a bowel obstruction. And now he's blowing off my sugars and the same thing is going to happen. Just frustrated.

Thanks for listening and helping.

 

[nmw0615]

Do you have a glucose reader or are you basing high/low sugars on how you feel? It could help to monitor your actual sugar numbers, keep track of carb and sugar consumption at meals with the corresponding glucose readings, and take that data to your team.

 

[rubyroselee]

No monitor at home. Doctor said insurance won't cover it without a diabetes diagnosis.

 

[nmw0615]

Glucometers are actually relatively cheap. Walgreens carries several brands. You can buy lancets and testing strips over the counter as well. Testing strips are a little more on the expensive side though.

I understand that spending money isn't always easy, but if possible, getting concrete data helps a lot with doctors and diagnosis.

 

[imported_Momto2]

Leah, when I realized I was having blodo sugar issues, I got supplies from a local drugstore, took my blood sugar at home almost every hour during the waking day for 2 weeks and presented the data to an endocrinologist at my CF clinic. She promptly diagnosed me with CFRD and put me on insulin with no further testing. As Nmw said, the supplies are quite cheap. You should be able to get everything you need for at least a week of testing for under $30. Test right when you start eating, 1 hour later, and then 2 hours later. AND whenever you are feeling wonky!!! (if you eat as frequently as I do, the testing will pretty much be every hour while you are awake) Keep track of everything you are eating and when. Before I realized what was going on, I actually ended up at the ER with seizures from hypoglycemia. I would eat, my blood sugar would spike, (up to about 350-400) and then drop VERY fast and hard in about 30 minutes down to 30-40 and I would seize (if I didnt eat something to prevent it). Interestingly, My A1C was NOT that abnormal, apparently people with CFRD can present with a fairly normal A1C (average blood sugar value over about 2 months). Remember, this is not just about blood sugar! High sugar values allow bacteria growth in your lungs and can cause serious inflammation. When I developed CFRD, I lost 15% of my FEV in less than 4 months from all the inflammation before I figured out what was going on. Let us know how it goes!

 

[Beccamom]

No monitor at home. Doctor said insurance won't cover it without a diabetes diagnosis.

are you seen at a Cff accredited CF center? In the US OGTT two hour is supposed to be done yearly. I have a normal A1C and test positive for CFRD on the 2 hour OGTT this year. 2 years ago I was borderline on OGTT which gave me an insulin resistence diagnosis and a home glucose monitor. With the home monitor I adjusted my diet, increased exercise and got my A1C decreased to an even lower normal level and yet because of CF my 2 hour OGTT A went from intermediate to bad and now I have a CFRD diagnosis and a continuous monitor. The morning sugar roller coaster is the worst. Basically what I thought was sugar highs were lows and what I thought was lows were highs. You doctor is not following the cff guidelines.

 

[Jet]

CFRD is so common amongst us that your center should be testing for it. I was diagnosed at 40. In the beginning I confused the highs and lows just based on my symptoms. They put me on glucose and its been under control for years.

 

[imported_Momto2]

Beccamom. I was a very well known CF center and they did NOT catch it since my A1C was fairly normal. My bimonthy glucose test was also normal, but it was because I always had my appt around 1 pm and hadnt eaten since 7 that morning.......so it never tested high since it had close to 6 hours to normalize after eating (they never asked me when I last ate). So, they never saw any reason to do a OGTT. I was already on a low-carb, low-sugar diet since I have issues gaining too much weight (yeah, go figure for a DDf508 who is PI). So sometimes you really need to be a super-sleuth and advocate for yourself.

 

[Hail2Pitt]

I have hypoglycemia, and totally understand what you're experiencing. Before getting mine under control, I struggled a lot.

My clinic gave me a glucose meter to use, and I initially would use it several times a day to understand how my sugars were affected by the foods that I ate. As others have said, the meters are cheap, so I'd recommend just buying one. Though, the test strips are expensive. I'd say to buy a meter, and have your doctor write you a prescription for test strips - you do not need a diabetes diagnosis for insurance to cover test strips. If your doctor disagrees, make him/her do it anyway. I've had three different insurance providers, and they've all covered test strips.

What you're describing definitely sounds like hypoglycemia, and while you might have CFRD, it doesn't necessarily mean that you do. For me, my sugars definitely go higher than the average person when I eat simple carbs, but they don't stay there. They spike high, then come crashing down and I feel horrible. My A1C is normal and my fasting blood sugar is high-80s to low-90s, so I have a ways to go before I have CFRD. If hypoglycemia is what you have, then insulin is not the answer (since it lowers your blood sugar). Mastering your diet is what you'll need to do.

I had a tough time figuring out what I could and couldn't eat. There is a lot out there on diets for people with diabetes, but basically nothing for people with hypoglycemia. While following a diet for diabetics is good for us to do, I disagree with a lot of the advice that's out there for diabetics. A few things have really helped me. First, being very careful about carbs. I changed my diet so I only eat a moderate amount of carbs each day (~150g), and I make sure I'm eating complex carbs when I do eat carbs, (e.g., I use Ezekiel bread for sandwiches). I also stopped eating fruit that's basically all sugar (melons, grapes, etc.), and I stick to fibrous fruits that are low in sugar (pears, raspberries, etc.). Second, I eat a lot of fiber - 50 grams or more a day. While this is a ton compared to the typical western diet, it's a pretty normal amount for the rest of the world. Also, as you're doing, I eat a lot of protein. A good rule of thumb is to eat at least 1 gram of protein for every 2 grams of carbs you eat.

Good luck! It took a lot of trial and error for me to learn how I needed to eat, and I'd be happy to provide more info if interested!

 

[Hail2Pitt]

I also wanted to mention that while the cream in your coffee might have set you off, it also might have been the caffeine. Caffeine can make hypoglycemic symptoms worse. For me, I can handle a small amount of coffee when I'm eating breakfast. But, if I have it by itself, I come crashing down. The last time I had espresso, it was a double shot on an empty stomach, and I ended up going to the ER because I felt so horrible afterward. It came out of nowhere - I was used to drinking caffeine, and had never had a reaction like that. But, I now have trouble with caffeine, so I'm very careful about how much I consume and when I consume it.

 

[rubyroselee]

Thank you all so much. I had no idea you could get testing supplies without an Rx. I just went out and bought everything and tested my first 2-hr post just to see and it was 164. So not terrible but a little elevated. I will start testing frequently tomorrow and keeping a log.

My A1C last year was 5.9 and I have no increased lung symptoms or weight loss, so that's good. My main issue is the morning sugars. They are just plain scary! I know I'm all over the place until about lunch time.

But I think I may be confusing my highs for lows sometimes, which isn't helping. I changed my diet to low-sugar/carbs, high-protein today and it was great. I felt much better without the sugar and carbs. So maybe I just need to perfect my diet. But that's a challenge.

Can't wait to test tomorrow! Thanks everyone and I'll keep you posted ?

 

[rubyroselee]

Tested my sugars throughout the day today and they were pretty darn good. I was conscious about my intake and stayed away from a lot of sugar throughout the morning hours and kept it high-protein. It was terrific. My sugars have been between 104 and 128 all day, even post-meals. I think I just need to stick with that in the morning and then keep my sugar consumption down throughout the day and I'll be OK. I think I just had a bad day on Friday and it freaked me out - I think I may have confused a high for a low and ended up going hyperglycemic for a bit there. But I feel much more confident now that I have the glucose monitor so now I can match my symptoms with the value and figure out what's happening. It's hard for me to stay away from the sugars, but I think I can control things by doing that. Thank you all!

 

[nmw0615]

I'm a huge sugar junkie. If it's sweet, I want to eat it. When I'm on steroids, that's a big problem because steroids give me diabetes (steroid-induced diabetes is what my doc calls it). I could never give up sugar 100%, so instead I found out how much a gram of sugar and a gram of carbs will raise my blood sugar. When I'm feeling an intense craving, I'll check my sugar and calculate how much sugar/carbs I can have that won't raise my sugar above "okay."