Hi, I'm new here & in need of a chat to wrap my head around this and hopefully connect with others who've experienced this or can lend some clarity.
A bit of context: Diagnosed T2 4 years ago. Was diet controlled + metformin for under a year before BG suddenly went out of control. Have since been on pretty much every class of diabetes meds, they'd work for a few months then revert back to BG up to high teens (14-20) despite maintaining a sugar-free healthy diet.
4 months ago - was put on SGLT2 meds (Forxiga) & within 4 days I was in ICU with euglycemic DKA. Apparently a rare reaction to Forxiga, although there seems to be increasing reports of cases. They suspected I'm T1/LADA but GAD antibodies were negative. They're still not sure about what type of diabetes I am, MODY has been suggested but the hospital doesn't do genetic testing and it's too expensive to be done privately.
Following that, they put me on Trulicity injections. My BG came down fast (from 19 to ~ 8) but had constant extreme nausea & fatigue. After 4 weeks, my BG levels shot back up & felt progressively sicker (but hoping it was a glitch & the Trulicy would kick back in) until a month later I saw my Diabetes Nurse Educator. She called the hospital, I was re-admitted and started insulin.
Now - I've been on basal/bolus insulin for almost 8 weeks. I've been really diligent (with the help of Libre sensors) about trying to get tight control of my BG, working out carb/insulin ratios etc and being precise about nutrition and dosing. The last few weeks I thought I was doing great (at last!), with BG 4-8 (mostly 5/6). I started feeling off the last week but figured my body wasn't used to BG now being in the 4's & 5's and would take some time to get used to. Then I had abdominal pains, felt disoriented.. even though my BG was 6, I checked my ketones - high. This was after lunch. Back to ICU & another Euglycemic DKA. What the hell!
I've only been home a few days & still feeling a bit fragile, scared and confused. They could not find a cause for this DKA, despite blood tests, xrays, ultrasounds etc. There's talk of possible autoimmune diseases. I'm at a loss to make sense of it or how I can prevent another one.
The hospital dietician confirmed that even though I'm "on the lower side of carbs" (along the lines of Dr. Bernstein's protocol) it's not low enough to cause it. I don't drink alcohol, haven't been fasting, haven't skipped insulin.
I'm all over the place! Has anyone experienced this after stopping Forxiga? I can't help but wonder if there was damage done to make me more prone to e-dka or if there's just something really wrong with me.
Any advice or ideas or support would be greatly appreciated, I feel like no one around me has any idea what I'm going through.
Thanks
A bit of context: Diagnosed T2 4 years ago. Was diet controlled + metformin for under a year before BG suddenly went out of control. Have since been on pretty much every class of diabetes meds, they'd work for a few months then revert back to BG up to high teens (14-20) despite maintaining a sugar-free healthy diet.
4 months ago - was put on SGLT2 meds (Forxiga) & within 4 days I was in ICU with euglycemic DKA. Apparently a rare reaction to Forxiga, although there seems to be increasing reports of cases. They suspected I'm T1/LADA but GAD antibodies were negative. They're still not sure about what type of diabetes I am, MODY has been suggested but the hospital doesn't do genetic testing and it's too expensive to be done privately.
Following that, they put me on Trulicity injections. My BG came down fast (from 19 to ~ 8) but had constant extreme nausea & fatigue. After 4 weeks, my BG levels shot back up & felt progressively sicker (but hoping it was a glitch & the Trulicy would kick back in) until a month later I saw my Diabetes Nurse Educator. She called the hospital, I was re-admitted and started insulin.
Now - I've been on basal/bolus insulin for almost 8 weeks. I've been really diligent (with the help of Libre sensors) about trying to get tight control of my BG, working out carb/insulin ratios etc and being precise about nutrition and dosing. The last few weeks I thought I was doing great (at last!), with BG 4-8 (mostly 5/6). I started feeling off the last week but figured my body wasn't used to BG now being in the 4's & 5's and would take some time to get used to. Then I had abdominal pains, felt disoriented.. even though my BG was 6, I checked my ketones - high. This was after lunch. Back to ICU & another Euglycemic DKA. What the hell!
I've only been home a few days & still feeling a bit fragile, scared and confused. They could not find a cause for this DKA, despite blood tests, xrays, ultrasounds etc. There's talk of possible autoimmune diseases. I'm at a loss to make sense of it or how I can prevent another one.
The hospital dietician confirmed that even though I'm "on the lower side of carbs" (along the lines of Dr. Bernstein's protocol) it's not low enough to cause it. I don't drink alcohol, haven't been fasting, haven't skipped insulin.
I'm all over the place! Has anyone experienced this after stopping Forxiga? I can't help but wonder if there was damage done to make me more prone to e-dka or if there's just something really wrong with me.
Any advice or ideas or support would be greatly appreciated, I feel like no one around me has any idea what I'm going through.
Thanks