THIS IS A LONG READ BUT HAS TO DO WITH SUGAR AND BLOOD CANCER.
My husband was diagnosed with RAEB 2 (although he is being treated as RAEB 1) two years ago. The date that his Platelet / WBC / RBC issues became apparent was much earlier.
In the Spring of 2008, my husband had been feeling poorly and was having frequent urination. He went to his doctor with the thought that he had Prostatitis (something his dad had and he thought it was the same symptoms)
He ended up being hospitalized with extremely low WBC & RBC, and Platelets at about 40. We also found out he had Type II Diabetes that day. Because he kept throwing the "Prostatitis" word around, the Doctors seemed to latch onto that and just assumed this was what was causing the low bloodwork, even though his prostate was not inflammed. He was discharged without a definitive diagnosis, with Diabetic medications and with instruction to have his bloodwork taken every 3 months for his Diabetes.
Between the years of 2008 - 2014 he struggled with his blood sugars and developed high cholesterol. He would often tell me that his platelets were still low, but that the doctor said "some people just have low platelets" and not to worry (I wonder if she would have felt the same if it were HER spouse? ... but I'm not bitter
). Up until the winter of 2014, I didn't worry, but then I started to notice changes in him, weight loss, and skin colour. I then started pushing and asking more questions and insisting on further testing. Finally he was diagnosed by way of 2 dry tap BMBs in April 2015.
Up until April 2015, his platelets, WBC, RBC and other tests were often low. It was a crap shoot each month, and the numbers were low all over the place.
In April 2015, he was started on a new Diabetes drug (Invokana) which basically controlled his Diabetes for the first time in years!! I also started giving him supplements (Vita B, Folic Acid, Cod Liver Oil). And his numbers improved to the point that his WBC and RBC #s were rarely out of the normal range. Of course, I took credit for this... and my miracle supplements. I have even posted about them here.
But then last month, we found out his Invokana would not be covered by our Benefits. So we are looking at a bill every month that we currently can't afford. A few months back I had entered all of his bloodwork into a graph I "borrowed" from someone on this forum (Thank you and I am sorry I forgot your name and can't find the original post). And I kind of had this feeling that maybe it was the Invokana that improved his bloodwork and maybe NOT my supplements
.
SO in order to explain why I believe this is so, I have to explain how Invokana works.
"Invokana works by inhibiting sodium glucose co-transporter 2, a carrier that aids in the reabsorption of glucose into the bloodstream through the kidneys, which occurs during the process in which blood is filtered through the kidneys." So in effect, sugar comes in through the mouth and out through the urine. There is no absorbing into the body. (a diabetics DREAM!!)
So here's the short story:
Diabetes uncontrolled - hospitalized with life threatening blood levels, plts around 40
Diabetes semi-controlled - frequent low & borderline low levels, plts around 60
Diabetes controlled (and all sugar being diverted)- rare low levels and plts around 90
One of the other things I noticed and have posted about on here is that his numbers are always low after Christmas or bouts of bad decisions.
So I am currently gathering all my information to present to the Specialist in March to see if we can get special permissions for Invokana. But at this point, he's getting his Invokana, even if I have to sell everything I own, plus we will be taking steps to keep sugar out of our diet as much as possible. What I learned that SUGAR is NOT your friend.
If you do a "SEARCH" of these forums "Diabetes", you will come up with literally hundreds of matches. If you GOOGLE search Diabetes and MDS, you will find a ton of information and confirmation that diabetes and platelet disorders are somehow connected, but it is currently unclear how. So which came first? The diabetes or the MDS? Who knows?
Disclaimer: I am not a doctor or a medical professional of any sort. These conclusions are based solely on my experience with my husband's disease and my desire to keep him alive.
I have the utmost respect for doctors, but it is so hard to get a "complete" picture when you only have so much time to devote to each patient in a day, and I feel strongly that we need to keep track of our information and changes by way of spreadsheet (Thank you again, kind stranger!) or even just a journal. Pay attention to your body and how it reacts in certain situations, and above all, be open minded.
I will let you know what he says about my thoughts when we get back from our appt in March.