Hi peeps. Long story but here’s the update.
Specialist is thinking MACROCYTOSIS (enlarged red blood cells) is caused by my parathyroid. This is different to the thyroid and sits in the neck, and regulates hormones as part of the endocrine system. The good news is my lymphocytes and monocytes (immature blood cells) are back in normal range, so therefore, although he is not 100% ruling MDS out yet (a type of blood cancer mostly caused by anti cancer treatment), he is cautiously optimistic and referring me back to my endocrinologist from 20 years ago.
I have had calcium in my blood results for decades and during my recent chemo, my surgeon tested further and did a nuclear parathyroid scan, discovering a problem and wanting me to undergo surgery to partially remove some of it. At that stage my oncologist and me jointly decided to leave it and watch. And as over the last 20 years, the blood results continued to swing between normal and high calcium in the blood. I am having trouble remembering what removing a parathyroid results in or how it will effect me, but this time I refuse to google. What I do remember, is it being complex and concerning, which was why I opted out. But it’s not as concerning as cancer.
So bottom line is, he is going to keep reviewing me until parathyroid issue is resolved, as that, he is hoping, will be the answer to solving the blood issue. OR if it proves not to be that, then and only then will he order a bone marrow biopsy to confirm MDS.
In the meantime he said reduce my alcohol and drink more!😳 The alcohol reduction is because macrocytosis can be caused by alcoholism, so I guess he wants to rule that out, but I don’t think I’m an excessive drinker, although I know I can cut down, and as it turns out I have been trying more recently. I have also been trying to drink 2 litres of water daily, so now I will just need to increase that. I’ve been researching an Ayuveda Retreat, so attendance there will definitely help me abide by doctors directions. I asked said Dr what is an acceptable reduction and don’t say ‘zero’ and he replied ‘three’. I nearly choked and questioned ‘three a week?’ I said can they at least be big glasses, and he said ‘no’. I asked him how much water was ‘more water?’ and he said ‘3 litres’. So when he said to me ‘don’t worry too much’ I was not game to ask him ‘how much was too much?’ as I hadn’t liked the first 3 answers very much.
I know I am in perfect hands. He is thorough, fully invested in my outcomes and a perfectly lovely man. He said he’d hit the books and look into the parathyroid before my next appointment. He told me Professor Hughes has been asking about me and I’m so grateful that Professor referred me to the MDS SPECIALIST, and I’m pretty sure he’s doing Hughes a favour by keeping me in his reviews clinic. I’m so lucky. If I had not advocated for myself and contacted my heomotologist, I believe it could’ve taken over a year to diagnose something like this with its complexity.
So starting Saturday 10th July, I am beginning the Deb’s Dryish Julyish Challenge and my sister in law (Mimi) and my husband, have kindly offered to do it with me. For 4 weeks – 3 glasses of alcohol per week and 3 litres of water a day, stopping on Saturday 7th August (Mimi’s birthday). Anyone wanting to join me on my challenge, we just FB Messenger every night, our water and our alcohol consumption. Saturday to Saturday is the cycle.
Happy days xx