My experience with Type 2 Diabetes, Empagliflozin and Polycythemia

[Origins]

Hi, My introduction is NOT to seek sympathy, merely to share my story for the benefit of others. I have been a Type 2 Diabetic for almost 20 years and now in my late 60’s. Generally speaking I have managed my diabetes through diet, exercise and slow release Metformin. I have had periods where my diet has lapsed, particularly when stressed I have resorted to carbohydrates and ridiculous quantities of chocolate, biscuits etc. resulting in my Hba1c levels increasing but refocused to acceptable levels. Over the last 4 years my family and I have experienced a particularly challenging period, including bereavements, domestic abuse of my daughter by an alcoholic partner, my son losing his wife to breast cancer, which caused my son to resort to alcohol to the point where he made himself very ill ending up being admitted to hospital several times but now fortunately sober. These are challenges a lot people themselves, family and friends experience. Before I knew it by November 2023 I had a Hba1c of 110. My GP prescribed additional Type 2 Diabetic medication, Empagliflozin (Jardiance) one 10mg tablet daily; which is a sodium-glucose co-transporter 2 (SGLT2) inhibitors. Initially I appeared to tolerate the additional medication well however by February 2024 I was not feeling well which rather understates how bad I was feeling. In March 2024 following my regular blood tests I was contacted by my GP because amongst test results the Haematocrit - HCT (also known as packed cell volume – PCV) value was 0.60; the normal range is 0.40 to 0.54. My GP told me the result indicated Polycythemia which is a blood disorder where there are too many red blood cells, thickening your blood, making your blood supply harder to flow, with a potential risk of strokes, tissue and organ damage; and heart attack if you have blood clots. I was urgently referred to a consultant haematologist with a very swift appointment by which time my Haematocrit value was 0.64 and I immediately had a venesection which is the removal of 500ml of blood, similar to donating blood. Over the next few weeks to get my Haematocrit values under a level of control, I had regular venesections until I was approximately 0.50. In the following months I had regular tests and if the value was above 0.50 I had a venesection. In September 2024 I started with thrush which is a potential reaction to Empagliflozin. By the beginning of November 2024 I could not cope with the thrush any longer and looked at the side effects in the patient leaflet, I promptly stopped taking Empagliflozin and the thrush improved, I started taking Empagliflozin again only for the thrush to become worse. I attended my GP who prescribed appropriate ointment to sooth the condition and I was immediately discontinued from Empagliflozin which was replaced by Gliclazide. In January, February and March my Haematocrit values came back within the normal range. Then out of curiosity I looked up Empagliflozin and Polycythemia, which revealed several articles from medical journals (none I could find in the UK) which showed a clear link between Empagliflozin and Polycythemia as a side effect. I arranged an appointment with my GP who has been practicing for a long time and immediately acknowledged he had never heard of Empagliflozin causing Polycythemia but his response was great and stated he was going to speak to his pharmacy team with checks of all his Polycythemia patients which I consider a wonderful response. I have now emailed my consultant via the hospitals medical secretaries and await her view of what I have experienced. Thank you for reading my introduction.

 

[Leadinglights]

Hi, My introduction is NOT to seek sympathy, merely to share my story for the benefit of others. I have been a Type 2 Diabetic for almost 20 years and now in my late 60’s. Generally speaking I have managed my diabetes through diet, exercise and slow release Metformin. I have had periods where my diet has lapsed, particularly when stressed I have resorted to carbohydrates and ridiculous quantities of chocolate, biscuits etc. resulting in my Hba1c levels increasing but refocused to acceptable levels. Over the last 4 years my family and I have experienced a particularly challenging period, including bereavements, domestic abuse of my daughter by an alcoholic partner, my son losing his wife to breast cancer, which caused my son to resort to alcohol to the point where he made himself very ill ending up being admitted to hospital several times but now fortunately sober. These are challenges a lot people themselves, family and friends experience. Before I knew it by November 2023 I had a Hba1c of 110. My GP prescribed additional Type 2 Diabetic medication, Empagliflozin (Jardiance) one 10mg tablet daily; which is a sodium-glucose co-transporter 2 (SGLT2) inhibitors. Initially I appeared to tolerate the additional medication well however by February 2024 I was not feeling well which rather understates how bad I was feeling. In March 2024 following my regular blood tests I was contacted by my GP because amongst test results the Haematocrit - HCT (also known as packed cell volume – PCV) value was 0.60; the normal range is 0.40 to 0.54. My GP told me the result indicated Polycythemia which is a blood disorder where there are too many red blood cells, thickening your blood, making your blood supply harder to flow, with a potential risk of strokes, tissue and organ damage; and heart attack if you have blood clots. I was urgently referred to a consultant haematologist with a very swift appointment by which time my Haematocrit value was 0.64 and I immediately had a venesection which is the removal of 500ml of blood, similar to donating blood. Over the next few weeks to get my Haematocrit values under a level of control, I had regular venesections until I was approximately 0.50. In the following months I had regular tests and if the value was above 0.50 I had a venesection. In September 2024 I started with thrush which is a potential reaction to Empagliflozin. By the beginning of November 2024 I could not cope with the thrush any longer and looked at the side effects in the patient leaflet, I promptly stopped taking Empagliflozin and the thrush improved, I started taking Empagliflozin again only for the thrush to become worse. I attended my GP who prescribed appropriate ointment to sooth the condition and I was immediately discontinued from Empagliflozin which was replaced by Gliclazide. In January, February and March my Haematocrit values came back within the normal range. Then out of curiosity I looked up Empagliflozin and Polycythemia, which revealed several articles from medical journals (none I could find in the UK) which showed a clear link between Empagliflozin and Polycythemia as a side effect. I arranged an appointment with my GP who has been practicing for a long time and immediately acknowledged he had never heard of Empagliflozin causing Polycythemia but his response was great and stated he was going to speak to his pharmacy team with checks of all his Polycythemia patients which I consider a wonderful response. I have now emailed my consultant via the hospitals medical secretaries and await her view of what I have experienced. Thank you for reading my introduction.

That is quite a story, the flozin medications are ones with the potential for causing thrush partly because they are encouraging the kidneys to excrete excess glucose via urine and with all that glucose in the urinary tract the yeast that cause thrush just love that environment.
Once glucose levels fall that minimises the risk.
Is polycythemia similar to hemochromatosis as that requires periodic blood letting. The condition could also have affected your HbA1C as you would have had a greater number of red blood cells.
My other half was convinced that esomeprazole was the cause of his Vitamin B12 deficiency having done some research but the GP was very dismissive.

 

[Ieva DUK]

Hi @Origins and welcome to the forum!
These past couple of years sound to have been a huge challenge to you and your family, but I'm glad to hear that you and your loved ones are safe. I hope you can keep supporting each other through any difficult times and that you're not forgetting to take care of yourself when things happen
It's also important to not stop advocating for yourself, whenever something doesn't feel right. I think finding a balance for your health is so difficult sometimes, so it really helps to have GP who's receptive to discussing things with you so I hope the changes turn out to be for the positive to you.

 

[Origins]

That is quite a story, the flozin medications are ones with the potential for causing thrush partly because they are encouraging the kidneys to excrete excess glucose via urine and with all that glucose in the urinary tract the yeast that cause thrush just love that environment.
Once glucose levels fall that minimises the risk.
Is polycythemia similar to hemochromatosis as that requires periodic blood letting. The condition could also have affected your HbA1C as you would have had a greater number of red blood cells.
My other half was convinced that esomeprazole was the cause of his Vitamin B12 deficiency having done some research but the GP was very dismissive.

Hi, Thank you for reading. Part of the challenge was ensuring I drank alot of water to try and reduce the Haematocrit levels, so of course the result was urinating more to the point of urinary incontinence! I cannot comment on any similarity between Polycythemia and Hemochromatosis. I have Thalassemia so I have B12 deficiency which is addressed by B12 injection every 10 weeks along with Nebido (Testosterone). My iron levels are maintained by an iron tablet daily. I have no knowledge of Esomeprazole, so again I cannot comment.

 

[Origins]

Hi @Origins and welcome to the forum!
These past couple of years sound to have been a huge challenge to you and your family, but I'm glad to hear that you and your loved ones are safe. I hope you can keep supporting each other through any difficult times and that you're not forgetting to take care of yourself when things happen
It's also important to not stop advocating for yourself, whenever something doesn't feel right. I think finding a balance for your health is so difficult sometimes, so it really helps to have GP who's receptive to discussing things with you so I hope the changes turn out to be for the positive to you.

Thank you for reading.

 

[everydayupsanddowns]

Welcome to the forum @Origins

Sorry to hear about the difficult few years you have been having, but thanks so much for taking the time to share your experiences with Jardiance.

Good to hear that your Dr went into action. I suspect it’s quite a rare thing, but it’s great that your Dr went on to check with others in case there were any other people affected.