Dixie, Armani, Wil and I hiking thru the woods to get to our tree house, as snow to deep to drive. Pulling sled full of supplies.
If you have been reading my blogs over the years, you will notice that everything is additive on top of my Multiple Sclerosis. Primary progressive multiple sclerosis still remains as my primary Diagnosis. I see my Primary Neurologist about every six months, which is coming up next month.
Our last visit with my neurologist, my botox had worn off, and other Doctors had taken me off All Nasaids. Ibuprofen off list, Diclofenac Sodium 75 mg twice a day removed. My Walking speed, or straightforward was off. Without botox, my lower extremities are rigid due to muscles being over stimulated by my MS, cramping up. I did not pass her exam, even with my eyes. Ocrevus was talked about, as a infusion medicine.
I had just received a Diagnosis, that nobody wants to hear. This was caused by my 17 phlebotomy I had done two years before. A medication, Fenofibrate, I am one of the lucky 3% that are allergic to. It is used in Hypertrycglimeria. I was switched to Vascepa, It is a Super Charged Fish oil, containing something like 32Fish pills into one. That was another diagnosis, but not the one that was concerning. IBelieve I need to keep that quiet for now, so not to concern my audience. Most of the Time spent with neurologis was t talking about this over.
I was given a new GP. She is wonderful for asking questions, and following me so far. I think I was just to complicated for a student GP.
My Endocrinologist was the next involved a few times. This got me a new specialist to add to my list, I will talk about in a future blog, as telemedicine with them in a few weeks. My Endocrinologist is as proactive as I am trying to be, when blood tests come back abnormal, and nobody is screaming about them.
So, if you are jumping into my blog at this point, you will know that the summer of 2018 I had THICK BLOOD. My Endocrinologist caught this and sent me to the cancer center, after taking me off testosterone therapy for six months, to verify pituitary gland, located inside the brain, that a MRI was checking out good. Yes, I knew the word Cancer, she was looking for. This however, checked out excellent. But testosterone was still needed injected. (Testosterone therapy) for yet a different diagnosis added, confirmed.
The Cancer Center, Dr R, did some DNA, to rule out polythcemia, Jak2 mutation. He looked further, and found two H63D genes causing me to iron overload, thus causing THICK BLOOD. 17 phlebotomy came next over a three month period.
This left me iron deficient, and ferritin deficient. None came back, going on the third year now. I did notice more fatigue, cold fingers, never had that before. I became out of breath for doing anything simple after this. Also sweating, soaking t-shirts for simple items. I still help walk our dogs daily, and have a elliptical, to keep get moving on rainy days. Moving a piece of firewood became troublesome. I let all my Drs know.
My blood test, I do every three months at the u c davis University Hospital. Quite a trip to take our 28 year old car to from our remote living. This last test, being fully hydrated, and doing a few extra test added on, figured would be somewhat like everything else.
Again, my Endocrinologist was telemedicine, as was my next visit. She was livid, that no other Dr was doing anything. THICK BLOOD was once again in my system. My Hematocrit and hemoglobin was way to high. But this could not be, as she lowered my testosterone again, so its like a pink rock weekly.
My O2 was talked about, as the Drs involved did not know I had done a sleep study. They had to search for that one. Figured box. Low o2, means sleep apnea, which us just a cpap mask. I'm not really interested in, as just sounds weird. My O2 readings were low during the day, recorded with my oxygen meter you stick your finger into. Hospital verified accuracy.
I have a great Heart Dr, who has followed me for ten years. Dogs, heart scans, wearing a heart meter. He said my heart was the best thing going for me. Tachriarda was another diagnosis added, as my resting heart beat is 115-137. He said " its like you are running a marathon, even when you are sitting still due to the Multiple Sclerosis ". Every Dr questions my fast heart rate, some bringing in EKG machine. My heart Dr does echo scans, with everything looking good, even thru first Thick blood episode. I am due for another scan coming up..
This Las scenario, I emailed all my Drs, and specialist, as was in loss of THICK BLOOD.The Drs started talking to each other. My main one from the Cancer center replied, after sending links on Thick blood with the following.
"You have secondary polycythemia - that means that you have increased hemoglobin and hematocrit due to your body trying to compensate for a number of other factors. This is not driven by a primary bone marrow issue. IF (and this is a big IF) the H63D homozygous mutation is contributing, it is doing so in a minor way. I can say this because your iron stores have taken years to recover despite taking in dietary iron - and HFE gene mutations act to increase oral iron absorption. In fact, your hematocrit has risen despite low iron stores.
While it would be convenient to pin this on a single diagnosis/process, I think it's more complicated in your case and may well be due to several smaller factors, each pushing you to a higher hematocrit. In this case:
- testosterone administration
- chronic hypoxia (this is USUALLY nocturnal, but may be during the day)
- H63D to some smaller extent.
The risks of blood clotting/symptoms in secondary polycythemia are poorly studied but do not appear to be high - thus any intervention is likely to be more risky than beneficial (with, perhaps, use of a baby aspirin). Do not forget, you felt terrible when I made you anemic and it took a long time to recover.
In summary, I'm not overly concerned about your "thick blood," so much as understanding what drives it (such as chronic hypoxia).
This can be further discussed at your next follow up. "
I will leave the conversation here. Feel free to comment with your thoughts
JoeY
