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Essential Thrombocythemia: Making treatment decisions
Blood Cancers & Disorders | Last Active: 12 hours ago | Replies (403)Comment receiving replies
Hi Jean, hope you had a fabulous christmas.
Saw my Thyroid specialist, who has recommended that I have half with the nodules removed. She showed me a drawing she did of the size of the nodules and the actual size of my thyroid. Was an eye-opener. She wants this done as soon as it can be arranged. However, because of my rough voice, sounds gravely, I have to see an Ear Nose and throat specialist, yes again a trip down to Hobart. Have an appointment with him end of January. Not sure what to expect, though.
On another note, I had blood tests done as I see a new dr at Holman Clinic in Launceston on 8th. I noticed that my GP has put on it, Polycythemia not Essential Thrombocythemia as all of my previous blood tests have stated. I dont see him till end January to ask. Now I am confused as to what I have!!!!
Replies to "Hi Jean, hope you had a fabulous christmas. Saw my Thyroid specialist, who has recommended that..."
@lynnebgraham
if the practice has a WaitList for canceled appts, pls get on the list.
And talk to your primary care physician for guidance.
Did your doc send labs/test results or call to move up your appt?
@lynnebgraham Polycythemia?! Is anything but platelets off on your blood tests? I'd check with the PC. I bet it's a brain fart on his part. Or autocorrect on his computer. I notice that every time I type in "thrombocythemia," my computer changes it to "thrombocytopenia."
Well, boo to surgery and running around for medical things! Will the lumps grow back? Any ideas what causes them?
I have a gravelly voice, too! We should form a singing duo!
Thanks for the update. It would sure be good to know if any of these ailments are related to ET. I am updating my gall bladder saga over on my high LDH thread.
Our Christmas was very low-key but enjoyable, and I hope yours and everyone else had a good day, celebrating or not.
@lynnebgraham
Hi Lynne,
I was diagnosed with ET 4 years ago and only had platelets that were high and with HU only 5 times a week kept everything in line. This year all of my blood cells rose and we kept increasing HU so that now I am up to 14 per week. I consulted at Cleveland Clinic an that Dr. thought that I may really have PV. After appealing United Healthcare decision I was just able to submit blood for myeloid gene panel to see if any other gene mutations may point to PV. However, my Dr. in Maryland says treatment at this point would be the same or if needed dif. meds that required PV diagnoses then she would change it to that. For now seeing if the increase in HU will stabilize. So maybe the PV in order to justify different drugs and I am not always sure it is a clear cut diagnoses.
Tammy, 63 ET since 2021
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@lynnebgraham
You're dealing with so much uncertainty, and the long drives for medical care must be exhausting.
I'm really sorry for all you're going through. Fifteen years after an ET diagnosis, suddenly you see PV on your chart??? The MPN universe is utterly baffling.
Please get as much rest as you can. And whether it's Christmas cookies, a good book or a gentle stroll, please do something nice for yourself -- every single day.