^
Sounds like you’ve made some good changes mel - hopefully your liver will have responded. Have you had any more recent tests?
Hi All
Re the disappearing posts , if this happens if you click the Back button your post will still be there then you can submit it again,works for me everytime, sometimes if you doubled click the post it can appear twice.
So Just a thought,hope it helps.
Linda
Finty I wanted to ask about the vitamin D level check that Penny Brohn centre recommended. Did they seem to think that GPs would be willing to do this or is this something we have to do privately? Also did they say whether to stop supplementing beforehand? Thanks, Elinda
A very good question Elinda. I haven’t seen my GP since I was dx’d - I have all my appointments with my onc at the hospital. I had my regular three-weekly treatment on Wednesday and when they took the bloods I asked if they could also test for Vit D, but it wasn’t on the checklist, so they couldn’t do it. The nurse did ask for a general “bone health” analysis, standard for those with bone mets, so maybe it will show up on that when I get the results at my next appt. I have been taking supplements, so wasn’t sure how useful it would be anyway. But the nurse thought as my calcium levels were ok, then my Vit D levels would be too. I have no idea if this is correct, so will check it over with my onc when I see her in a few weeks. I don’t know about stopping supplements prior to testing, or whether that can be built into the calculation. Maybe some of the nurses that post here can help?
finty x
Found this which is interesting on Vit D and testing etc
patient.co.uk/health/Vitamin-D-Deficiency.htm
drbriffa.com/2009/07/16/my-vitamin-d-results-are-in/
Further down there is this comment from Dr Briffa:
'Finally, getting vit D levels checked on the NHS is not straighforward. For example, a patient of mine at high risk of vit D deficiency with symptoms suggestive of it too was refused a test on the basis that her calcium level was normal. Aghhhhh!
17 July 2009 @ 8:30 pm’
So perhaps it isn’t as straightforward as calcium levels okay then vit D is okay.
Oh dear! More research required!
A friend of mine with leukaemia has been told by her onc that he is 90% certain the cause is her very low levels of Vit D. She has spent her whole life hiding from the sun - has perfect white skin, but a terminal diagnosis. Hers is a slow developing one and she could survive 10 years. The only cure would be a bone marrow transplant at a later stage when she starts to deteriorate, but her sister who is the only match, was dx with breast cancer earlier this year, so that is out of the question - terribly sad.
finty x
That is such a sad story, I’m very sorry to hear it.
I think vitamin D is very important and you may be interested in this article:
medscape.com/viewarticle/589256?src=emailthis
You do need to register but it’s free. It was sent to me by husband’s aunt who is an oncology nurse. I posted elsewhere that she met with the lead breast care nurse and oncologist to ask advice about me (she’s in Canada) and they said that I should take vit D for the rest of my life.
I believe there is a lot of research going on looking at the connection between multiple sclerosis and Vit D too.
I’d be very interested to see if anyone knows of an organisation or way of getting vit D blood test done privately.
Chris Woolhams on his canceractive website has written recently on Vitamin D and it is well worth looking at if you haven’t already.
Best wishes All
BUMP