Update - appointment with cons. haematologist (Dr Mark Drummond)

[Peetzil]

Hi everyone just thought I’d post an update as a few of you guys asked me to keep you posted on how it went with my private consultation. Well, saw Dr Drummond at Spire Edinburgh yesterday. I went armed with my carefully collated blood results from 2017 till now & results of my JAK 2 & iron panel! Firstly he was very nice, down to earth always a bonus. He doesn’t think it’s PV as my results Hb/Haematocrit although borderline are stable ‘teetering around the fringes of normal range’ was how he described it. He was interested in my raised Ferritin and thinks as my CRP was low it is worth ruling out Haemochromatosis. He suggested I go back to my GP and ask her to check for the Haemachromatosis mutation and also for a serum EPO test and if this is low then to check for Exon 12 mutation, although he said that’s so rare he’s only seen 1 case in 10 years. He did also say it might be worth getting an abdominal ultrasound to check my liver as my cholesterol is very high (11.1…I know 😳) overall I found it resulting & feel at least I have a plan while to return to my Dr with. Hope that helps anyone else in similar position.

Best wishes,

Lynn 😊

[hunter5582]

That sounds like a very thorough evaluation and a good plan to move forward. The recommendations certainly make sense and will help you sort out what your actual diagnosis is (or are),

Even when we find something wrong, it is much easier to deal with when we know what is is and can put a plan in place to deal with it. The uncertainty is often far worse than the reality of what we find.

Please do continue to let us know how things unfold. We can all benefit from what you learn. All the best to you as you move forward.

[Peetzil in reply to hunter5582]

Thank you Hunter that’s so true! & will update any future developments. It’s great to share our learning/experiences 😊

[Aime]

Hi, I went to see Mark Drummond a few years ago and thought he was very thorough, patient and listened to me! Definitely worth paying to see him. Hope you get sorted out soon. Kindest regards Aime 😻

[Peetzil in reply to Aime]

Totally agree Aime! He said to go back to my GP to ask for bloods as getting them done privately is ‘embarrassingly expensive’ 😄thanks for that, am sure some others would have just arranged further tests without considering costs esp when self funding!

[Threelions]

He certainly sounds like one of the good guys 👍Always positive to have a plan. Thanks for the update and wishing you all the best moving forward.

[Peetzil]

Thankyou 😊

[EleanorPV]

Hope your GP now runs these tests. Or maybe your haematologist will need to run them. Good luck.

[Peetzil]

I hope she will, she’s been fairly supportive up till now. 🤞🏻