BusyBee, how is it going so far? One week in right? I just met with my endocrinologist today and she said she doesn't want to prescribe an "experimental" medicine. In the meantime despite working out 4-6 days a week and watching what I eat (most of the time) my weight continues to go up. I made her pull my chart up so she could see the course of my weight. She keeps telling me that I'm fine and look fine but once she saw the trajectory (steadily on the rise) she agreed to try to help. She said she'd call a colleague at a local academic institution. She also suggested a trial of metformin, although she doesn't think I fit the profile for insulin resistance/metabolic syndrome. Anyone have any success with metformin? ugh. I'm feeling beat up by diabetes today.
Bummer Gayle! How's it going now?
I am so sorry to hear about the difficult times you've had with your endo. I hate feeling like i've been beat up by diabetes. Hang in there. I believe you will have a breakthrough.
Well after one week- Thursday to Thursday, I've lost 4 lbs and I feel great! I haven't been working out either. I will tell you why in a minute. My blood sugars have been way more stable and I've had to reduce some of my basal and carb ratio a little. So before I was hitting 200's, Now my blood sugar tops out at 170, sometimes 140 depending on the food. My norm baseline BG before meals is 115 or lower. My fasting levels in the AM are finally under 120. Since diagnosed, I've always urinated a lot so I don't see a difference in that department but my endo told me to drink way more water. Dehydration is prone to happen in people taking Invokana. I alternate between water and power aid (zero calorie kind).
So, the day before I started Invokana, my two older kids and I got food poisoning- vomiting and slight fevers. It was horrible. I did recover quickly. My husband is an EMT, so he gave me an IV in bed. I am so addicted to IVs. :) Then on Tuesday of this week, I developed a cold that came on after the food poisoning but I thought it would go away. It didn't but kicked into high gear on Wednesday and Thursday. I'm just now feeling slightly normal again. Oh and as luck would have it, I got my period during my cold. Yay for me! Yet, my blood sugars have never been better.
Listen, I know Invokana isn't approved for T1's but a T1 & 2 body chemistry do have similarities. It is experimental. Your endo is probably trying to cover her a$$. The only major difference is a lot of the meds for T2 uses the pancreas because on some level T2's still produce insulin their bodies don't use insulin efficiently and T1's don't. There are a lot of Endo's having T1 patients use this medication because it doesn't involve the pancreas or the liver. I am not a doctor nor am I a medical professional but given all the factors involved in your post, maybe you should look for a different endo. Your health is important and if your A1C is high, blood sugars unstable, insulin needs increasing and weight increasing something isn't right here. The definition of insanity is doing the same thing over and over again and expecting different results. Have you tried Symelin? I tried it but it made me sick and portion control wasn't my problem. I usually each 30 grams of carbs or less for each meal. Plus, I was terrified of the hard lows people talked about with it.
Are you weightlifting? I weight lift a lot and what I found is that when anyone lifts the body immediately produces a flood of hormones to help recover and help keep the muscle. For a diabetic, more hormones most of the time equates to higher blood sugars. I know you mentioned that you and your husband own a gym but wasn't sure what type of workouts you do. Yes a couple of days after I lift my BG's are low but there is only so much we can do before our biology and chemistry for that matter start working against us. I felt like I was working myself to the bone and now I will workout, once I recover from this darn cold but I feel much less pressure on myself to be crazy about working out. I had lost 10lbs on my own but I had plateaued after that.
A couple of things I did that helped me lose 10lbs, is I stopped eating after 9pm at night, unless I had a low, then I would only drink juice. This helped me maintain my weight loss. For a lot of the lunch and dinner meals in our house, we eat a lot of lean meats and veggies. I usually have a protein heavy breakfast with some carbs. These types of foods don't typically raise BG's. It was really difficult for me, but when I really analyzed my diet, I found somethings to cut out.
I wish you the best, you will be in my thoughts. I will keep you updated on my experience. Let me know what you decide to do.
After about 2.5 months of taking Invokana, I have lost 15lbs. and dropped two dress and 2 pant sizes. I feel great and have a lot of energy. I do still workout a lot and watch my diet but I feel a lot less pressure than before to produce results. My insulin has dropped a little. I went from 18 units to 15 units and from a carb ratio of 8.7 to 9.3. Haven't gone into the endo yet to check A1c but I can tell by my BGs that it has to be lower.
I haven't had any issues with UTI and/or yeast infections. I am on a probiotic to be on the safe side. I have low blood pressure before the meds and so on it, I feel more dizzy at times. I also have to drink a lot of water but I did that anyway.
Hi there! Great news! After my endo consulted with academic colleagues (even after they told her there probably wouldn’t be much benefit) she agreed to prescribe invokana!!!
I’ve been on it for a month now and have lost three pounds. In total I have cut of about 1/3 of my total daily units, my post-meal CGM curves are way flatter and I have fewer lows (maybe three this month and only got to 75 at that). I’m SO much happier with my blood sugar profile and the fact that I have finally been able to lose some weight. I drink a lot of fluids (water and sport tea) and have had no side effects at all. I’m thrilled.
I had lost 3 pounds on my own before she prescribed (lowering insulin via exercise, four small meals a day, and increasing exercise to 6-7 days a week - spin, hiking, weights). So in total I’m down 6 pounds. I have ten more to go but it’s so nice to see a light at the end of the tunnel.
I’ll be bringing my endo some flowers to our next visit and I look forward to seeing what my a1c is after some more time passes.
Thanks for all of your encouragement and congratulations Busybee!
Congratulations! Yay for you. I'm so happy to hear that the meds are working and you are seeing the results you really want and need! :)
Keep up the great work Rachel! :)
It is so great to hear some success stories! I tried invo back in January but stopped it right away after a yeast infection. I started it again about two weeks ago with some preventative measures in place. My insulin needs have gone down some and I lost a pound, but I also hadn't been eating the greatest (emotional eating, etc.).
On top of invo I am now trying to cut my carbs to about 30 grams per meals. I always worked out a great deal, so I am going to keep that up. Hopefully I can have some success like you ladies. All I want to lose is about 10 pounds. I gained it after getting engaged (stress eating from wedding planning and buying a house) and now I can't seem to lose it :-(
How are you doing still with the Rx?!?!
Hi! Well…I’ll give you how I really feel, then I’ll give the fair balance with what j have learned this year.
I can’t say enough about how amazingly positive this drug has been for me. In short, I have reduced my insulin (basal and meals combined) by about 40%. I no longer get lows (okay, maybe twice all year, but it used to be twice+ a week). I have lost 15 pounds with mild dietary changes and exercise in addition to Invo. I had a number of days where I’ve stayed within normal BG ranges for a non-diabetic. I NEVER had that before.
And the weight loss…I hate to sound vain, but I am so relieved to have my body back and some confidence back. We own gyms…and to feel like a fat gym owner felt like I wasn’t walking the talk. It wasn’t good.
I love this drug and what it has done for my overall health. I haven’t had any infections or side effects so far, and I’m keeping my fingers crossed it stays that way. I’m considering starting a probiotic again just as a preventative measure.
Oh yeah, and my A1C is 6.6. My endo actually thought I could start coming every six months instead of every three because things are going so well.
Okay, on the the fair balance: my endo said that there have been 73 reported cases of DKA. Apparently, if insulin levels drop too low, such that the sugar can’t get into the cells it needs to, your body will start burning fat and muscle, kicking DKA into gear. I haven’t experienced this but have had a few episodes of nausea and shortness of breath. I treated myself with zofran, ate carbs, took insulin and drank lots of water. Nothing ever came of it, but I take it as fair warning that I have to stay on top of it. I eat carbs and take insulin at every meal just so my insulin levels don’t get too low. I do eat relatively low carb (15-30g at each meal, 4 meals a day). But I wouldn’t go any lower (as I had intended to when I first started this drug). The risk of DKA is a real one.
I’ve been able to lose weight without dropping all my carbs out. It has been a slow process, but I’ll take it. 15lbs in a year is dreamy since all I could do before is gain no matter what I did.
My goal is 5 more pounds, then I’ll figure out what to do. I don’t want to keep losing beyond that, but I don’t want to stop Invo because of what it has done for my overall glycemic control and prevention of lows.
I’m open to suggestions, ideas, thoughts, questions, all of it!
Thanks for checking in!
I have a suspicion that dehydration may play a role in those DKA cases. The majority of the cases involved other factors which may have increased risk. But truthfully since DKA actually involves dehydration, dehydration would never be suspected when someone is diagnosed with DKA. Dehydration is known to be a major risk for DKA. And as anyone who has taken Invokana or other SGLT2 drugs will tell you, you lose a lot of fluids. And with those fluids go electrolytes. I am on Invokana and make a special effort to drink plenty of fluids and I make sure that my food and supplements keep restoring my electrolytes.
Thanks for the update. I’m so glad to hear of your success with Invokana. It really involves your hard work too, so great job! I loved it too! Although, my alc dropped and I became so fertile that I got pregnant again! I’m on my last pregnancy. If I have difficulties again losing weight after breastfeeding, then I will try to go back on Invokana.
I too heard about the incidents of DKA with Invokana and the thing that medically confuses me about that reporting is that when DKA occurs, blood sugar goes up, like really high. Like 250, 300’s +. Thats a symptom at the very least. So you would know if you are heading towards DKA, right? Has anyone gone into DKA without blood sugar being really high?
I have met with a couple of pretty great dieticians that recommended 30-40g of carbs at each meal was good too. You are in that range and sounds great!
As for losing more weight, since you own a gym, you probably already know this, but having more muscle built in your body is better for burning more calories throughout the day. More muscle is better to have than fat. Not sure what your workout plan is like, but when I workout, I focus on building muscle in my weaker areas (arms, trunk area, and butt/hip area). My legs are really strong and I never have had issues building muscle in them. I also played sports a lot in high school and some in college.
The thing with losing more weight is that you should do it safely and appropriately for your body. Its a great goal to work towards.
So I often thought about the idea about what next when I reached my goals. Do I come off Invokana and see what happens? What would happen? Would I gain all the weight back again? I would say that when it works, you kind of get hooked and don’t want to come off of it. I had to come off of it when I found out I was pregnant. It wasn’t that horrible and I thought it would be much worse. My insulin levels did rise again but I’ve gained less weight in this pregnancy than I did with my last child. My BG control has been great too. My alc is at 5.9 currently.
Although pregnancy does some wacky stuff to a woman’s body.
Best wishes on your next steps,
Thanks for this Brian! I’m very interested in this. The couple of times the nausea and shortness of breath hit me, I couldn’t figure out why because I was eating and taking the same amount of insulin as usual. Perhaps dehydration was the key because one morning I felt that way was after a nighttime episode of leg cramps after not drinking well the day before. I do drink a lot of water and green tea daily, but will work extra hard at hydrating. Thank you again!
Do you know why dehydration causes the metabolic process of DKA? Understanding the physiologic mechanism helps me.
Also, what supplements do you take for electrolytes? I have ended up craving a lot of salt, and I salt my food more than I used to, but on my bloodwork, my sodium is actually low, despite my supplementation.
I’d love to hear what else you do. Again, this drug had worked wonders for me. I’m starting to be more adventurous and do more than I used to because I was always going low.
Thanks again for your input!
Hi! Congrats on the pregnancy! And congrats on such a great A1C. I’m continuing to work toward that!
As I understand it, the high glucose in DKA is more a symptom than a cause. There have been SGLT2 cases of DKA with normal blood glucose levels. With invokana (or others) the excess glucose is excreted, so that marker is normal, but ketones are still present and people are still in DKA. It’s called “euglycemic DKA”. This is very confusing for ER docs who aren’t very aware of this possibility with these drugs.
I have my husband and my best friend trained and ready to inform people should this happen to me. However, I do feel like I’ve kept it under control (luck?) and haven’t really had any problems.
As far as exercise, it sounds like we do a lot of the same. I lift weights, I spin, and I hike. I try to get a good balance of both strength and cardio.
Thanks for your thoughts! I’m sure I’ll post again when I’m trying to decide about staying on or off. Five more pounds and we’ll see!
I also experienced leg cramping which led me to think I had an electrolyte problem. Some of the cases of DKA reported have not been at high blood sugars but at blood sugars 250 mg/dl and lower. And yes, it is clearly understood that dehydration can cause DKA. Here is what WebMD says about DKA:
Ketoacidosis can be caused by not getting enough insulin, having a severe infection or other illness, becoming severely dehydrated, or some combination of these things. My understanding is that dehydration and the accompanying electrolyte depletion totally messes up your ability to take up glucose. It turns out sodium is absolutely vital to glucose uptake and if you have low sodium you can become really insulin resistant.
It have real cravings for salt. I probably get more than 5000 mg /day of salt, sometimes more. My doctor tests my sodium levels and they are fine. I also take magnesium and potassium which have really eliminated the leg cramps.
Just an update on this topic. I’ve been on SGLT2 inhibitors now going on 2 years. There has been a panic about whether these drugs can cause euglycemic (normal blood sugar) DKA. Anne Peters raised all kinds of concerns and the FDA has been looking at it. The most recent Teleconference with Dr. Bernstein actually talks about euglycemic DKA and he attributes it to dehydration as suggested above. See his comments at 17:00 in the video.
I take special care to stay hydrated. Are others SGLT2 inhibitors? Did your doctor advise you to pay special attention to hydration? Do you?
My endocrinologist just prescribed Forxiga 5 mg for me to try to see if it can help me take less insulin and lose some weight. We had a lengthy discussion about the risks of DKA for people with Type 1. He said he’s seen several cases of severe DKA with near-normal blood sugars in people with Type 1 taking these medications. He wants me to check ketones daily and any time I feel unwell while taking the medication, and stop taking it immediately and follow sick day rules if I have high ketones. He did say that I needed to be sure to drink lots of water throughout the day as well. I’m a bit nervous about the risks of DKA, especially in a situation such as a pump site failure, but I’ll try this medication and see how it goes in regards to weight loss and blood sugars.
My doctor never advised me to drink additional fluids even though I have mentioned my “theory.” I even dropped by a booth at a medical show to talk to the Invokana representative to ask about it and they didn’t advise me to drink or keep my electrolytes up. They did however take a “formal” report of excess urination as a side effect. That was a strange experience.
I was reading the package insert last night and was surprised that DKA wasn’t even listed as a side effect. I’m not sure it said anything about staying hydrated, either.
I always look for the prescribing information for healthcare professionals. Here is what it says:
Reports of ketoacidosis, a serious life-threatening condition requiring urgent hospitalization have been identified in postmarketing surveillance in patients with type 1 and type 2 diabetes mellitus receiving sodium glucose co-transporter-2 (SGLT2) inhibitors, including INVOKANA. Fatal cases of ketoacidosis have been reported in patients taking INVOKANA. INVOKANA is not indicated for the treatment of patients with type 1 diabetes mellitus [see Indications and Usage (1)].
Patients treated with INVOKANA who present with signs and symptoms consistent with severe metabolic acidosis should be assessed for ketoacidosis regardless of presenting blood glucose levels, as ketoacidosis associated with INVOKANA may be present even if blood glucose levels are less than 250 mg/dL. If ketoacidosis is suspected, INVOKANA should be discontinued, patient should be evaluated, and prompt treatment should be instituted. Treatment of ketoacidosis may require insulin, fluid and carbohydrate replacement.
In many of the postmarketing reports, and particularly in patients with type 1 diabetes, the presence of ketoacidosis was not immediately recognized and institution of treatment was delayed because presenting blood glucose levels were below those typically expected for diabetic ketoacidosis (often less than 250 mg/dL). Signs and symptoms at presentation were consistent with dehydration and severe metabolic acidosis and included nausea, vomiting, abdominal pain, generalized malaise, and shortness of breath. In some but not all cases, factors predisposing to ketoacidosis such as insulin dose reduction, acute febrile illness, reduced caloric intake due to illness or surgery, pancreatic disorders suggesting insulin deficiency (e.g., type 1 diabetes, history of pancreatitis or pancreatic surgery), and alcohol abuse were identified.
Before initiating INVOKANA, consider factors in the patient history that may predispose to ketoacidosis including pancreatic insulin deficiency from any cause, caloric restriction, and alcohol abuse. In patients treated with INVOKANA consider monitoring for ketoacidosis and temporarily discontinuing INVOKANA in clinical situations known to predispose to ketoacidosis (e.g., prolonged fasting due to acute illness or surgery
Note how the descriptions says that patients present with dehydration.
My doctor said that in cases of DKA in Type 1s, the cause was usually that they had lowered their insulin doses too much (to the point that their body switched over to burning ketones for lack of access to glucose), but without high blood sugar, there was no warning sign that insulin doses were too low.
Do you take this medication while still eating a low-carb diet? I’m thinking I’m going to eat enough carbs that my body is not burning ketones on a regular basis while I take this.