Hi Everybody,
Huge apologies for the very late reply to some incredibly useful and supportive advice given here, had a deadline for some very important paperwork which of course took me a long time due to my battered capacity. All your advice is greatly appreciated.
I am definitely lacking in mental clarity. I really wish I'd had the capacity to come back and answer here a few days back....oh well... it is what it is....
So... my replies first of all are:
Penguin: The Genesight test is a cheek swab. Yes, you'd have to get it done in the US, if a friend took it back for you they'd be breaking the law as you're simply not allowed to cross borders with DNA samples. I'm guessing this would actually be smuggling? - but exactly what law you'd be breaking I don't know. For sure, there's no way I'd risk it!!! By the way what does MOAO mean? I know exactly what you mean by being a sensitive flower - I'm just the same!!
Lazla: I'm only a bit better.... I keep zoning out, feeling discombobulated.. I'm not saying it's unpleasant but I am saying it doesn't feel like me and it's definitely the meds making me feel this way, also it's making me highly unproductive as I'm very forgetful and keep drifting off.... I just cannot function first thing in the morning (am changing my routine to adapt) and I have shaking hands, diarrhea, due to the Mirtazapine. I still have chattering teeth, "clenching in my left gut area" which I'm sure is the biggest contributor to my IBS and need to wriggle my foot due to the Venlafaxine..... whilst these meds are helping omg are they also messing me up. It is a very very hard price to pay, but I am at least functioning. In balance, it is better than severe anxiety..... I'm sure it sounds familiar when I write I just want to scream "I just want to be me!!! But I don't know who me is anymore!!" ....if I had the energy to scream of course.
Joziel: Thanks for the reminder - have a gp appointment booked, will ask for previous thyroid results and also ask if she thinks I need another overall health blood test.
Confused about HRT: Thanks, your comments are very interesting and good for you for having a verbal fight! - I'm far too polite most of the time. And yes you're right "practicing medicine" it is. Although I can also see why it's a guessing game for docs and not an exact science as we're all so different. I didn't know you could get liquid venlafaxine... but my GP should have!!
Everyone:
An update into my calls and emails to UK gene testing companies.
I called GP London first and spoke to a helpful but confused lady. My phone brought up this number as being owned by "Ak Private Management". When she called me back on Monday she thought I had called her about the doctors laboratory...
The doctors laboratory when emailed directly weren't particularly helpful and you need a referral for them.
On Tuesday Ms "Helpful but confused" called me back with more information. The two tests offered in the UK are different. The doctor's laboratory test genes P450 2C19 and GP London test genes P450 2D6. What's the difference? - I haven't got a clue!! - this is all now far out of my level of understanding. Ms Helpful then emailed me back a sample lab report which came from yet another company: Medical Express. (
https://www.medicalexpressclinic.co.uk/blood-tests but I can't find the gene test on this site). I don't know about you but now I'm starting to lose a little bit of trust simply because there seems to be some sort of monopoly/cartel going on. My guess is that there is only one lab in the UK but a lot of "shop fronts". This actually makes me very grateful for the NHS service even though it can be frustrating, imagine if there was no NHS and you had to deal with this all the time.
As it may help I'll quote the email sent from the lab directly:
"Dear "Ms Helpful",
With regards to CYP450 2C19 currently our in-house reports are very simple.
However, we can offer some further direction if you are interested in our in-house test for CYP450 2C19.
Alternatively we can also refer if the test requires a comprehensive pharmacogenetic. Please see attached sample report.
The 2D6 will have a similar report structure as attached.
To explain how the reporting works, the report structure is the same as for the 2D6 and all the information is generated from a single pharmacogenetics knowledge management system. Unlike this 2C19 report, which was generated from either a qPCR or sanger test solely for 2C19, the 2D6 result will be based on our NGS global panel of 335 genes. Only the 2D6 genotype, phenotype and guideline information will be included, along with any clinical commentary if the requesting physician poses a clinical question. "
Attached to the email was a 13 page report that may as well have been written in Martian..... honestly, I'm not even convinced a psychiatrist could understand it... but hopefully I'm wrong on that one
haven't heard back from my one yet btw.
I'm quite happy to post the report somewhere online if anybody wants to see it - I just don't know how I can do it here.
And finally for now.... the genesight test is a cheek swab as is the UK based Myogenes. Gp London / Doctors lab / whatever they're calling themselves today is a blood draw. From my (admittedly very limited) experience, I don't see why all of them can't do cheek swabs as it's so much easier for the customer and surely (as it's genes we're talking about here) they can extract the same information. But then if you not set up for cheek swabs at the lab then you can't offer it can you, we can't assume any of these business have customer simplicity as their first priority.
Thanks again everyone, very grateful to be in "my new community" and will update again where I can.
Yours, very confused and discombobulated, Alex x