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[Kathleen]

Hello ladies.

I was prescribed Venlafaxine at the same time as I started HRT back in 2013. I have never been sure if this AD helped or not but my GP was happy to increase my dose over the years and I now take 150mg daily. These
are the slow release variety and are capsules not tablets. I read somewhere that it's possible to open the capsules and take out some of the contents before reassembling them. I haven't tried this so I am not sure if the capsules contain granules that you can count or powder that you can measure. Hopefully any psychiatrist worth his/her salt will know the answer!
On a personal note I would love to be drug free as my experience hasn't been good. I am currently struggling with overwhelming fatigue which may be due to the introduction of oral Utrogestan and the reduction of Sandrena gel. Whatever the cause I would appreciate a return to sanity asap!
 
Take care ladies.

K.

[Hollyboll]

sorry to hear you're having trouble Kathleen. Unfortunately GPs are very happy to increase doses of ADs without having much clue what they are doing let alone of the increased side effects without increased efficacy at higher doses or how best to come off them.  I'd re-iterate looking at some of the resources I mentioned above.

Alex - I agree we'd all love a magic bullet; I often wish for a time machine - if I'd known 10+ years ago what I know now etc ...
You might consider asking GP for a referral to the Female Hormone clinic (Michael Craig's clinic) at the Maudsley.  It may take months but is there a downside to getting in the queue?

xx

[Alex 2024]

Hi All,
I've just done some Googling on genetic testing in the UK and have found this.....

Genesight charge $330 BUT don't seem to connect with anyone in the UK, I've will email them to ask them if it's possible.

Myogenes will do this the test costs £786 but I would need to pay/find someone to interpret the results
 https://www.myogenes.com/the-psychiatric-pharmacogenetic-test/

The London psychiatric centre seem to do this too, I think it would cost around £1,375 - initial consult, test, 2nd consult. I simply cannot afford this.

Could any of you check this for me....? I have to stop now as I've got very very stressed doing this research and I'm in such a state that what, if I was in an ok state, would take me 30 mins now takes me 2 hours and leaves me with a stress headache.... I'll look at any replies later.

Have a good evening everyone x

[Penguin]

I think both the other options are too expensive tbh, especially as you'd need to pay a doctor to requisition the test for the myogenes one as well.
You could find a US practitioner who does consultations by zoom and who would be willing to post the test kit to you. I have no idea how you'd do this apart from contacting Genesight and getting a list of practitioners who use their tests.
But I'd have thought it'd be easier to email your psychiatrist first and ask if they know a way around it.

[laszla]

The specific gene set to test for this is the cytochrome P450 (CYP450), for info see https://www.mayoclinic.org/tests-procedures/cyp450-test/about/home/ovc-20393706

The Doctors Laboratory in Wimpole St have the test but I couldn't see the price and it's not clear whether they interpret the results.

I have experience of the Doctors Labroatory https://tdlpathology.com/tests/tests-a-z/tests-c/cytochrome-p450-2c19/ in a slightly different context - it's where I go to draw blood for my hormonal tests with Medichecks; the place itself is totally professional and bonafide. The also have courier collection in Manchester.

If it were me I would phone them for clarifications on what to do.
Also this place. GP.London (again in the Harley St area) lists the P450 test at "only" £536 https://www.gp.london/private-blood-test-price, plus £50 for drawing blood (Doctors Lab charge £35 for drawing blood when I use them with Medichecks).
It's not clear (but I did not look for that long) whether these people will then "read" the results for you.

[Alex 2024]

If it were me I would phone them for clarifications on what to do.
Also this place. GP.London (again in the Harley St area) lists the P450 test at "only" £536 https://www.gp.london/private-blood-test-price, plus £50 for drawing blood (Doctors Lab charge £35 for drawing blood when I use them with Medichecks).
It's not clear (but I did not look for that long) whether these people will then "read" the results for you.
[/quote]

Wow! Thanks Lazla, that's super helpful!!!
 
Penguin: I agree! that's all far too expensive

Hollyboll: That's a good idea about getting on the waiting list for Maudsley, thanks! Also, I noticed from another thread that you go to Chelsea & Westminster. I was under their care but they discharged me last Feb when I "didn't answer the phone" for an appointment..... only my phone hadn't rung and I was waiting for their phonecall all afternoon....  I should have challenged this but I didn't have the energy or headspace to do it, so I just accepted it. They were much better than my GP when I could actually speak to them but I had a very very up and down experience with them, not helped by the fact that my referral to them started during lockdown and they were understandably really struggling.... sigh.... if I could clone 5 of me to be my personal PA I'd ask Pals to get me back to the clinic but it's just not going to happen - do many other life priorities
Thanks v much everyone x

[Hollyboll]

Thanks Alex. Let us know how you get on
Xx

Ps I’m not (and never been) at c&w. I’ve heard the admin is v challenging - your story is another bad one

[Alex 2024]

Thanks Alex. Let us know how you get on
Xx

Ps I’m not (and never been) at c&w. I’ve heard the admin is v challenging - your story is another bad one

Oops! Sorry!! - not used to forum posting at all - getting you mixed up with someone else I guess. Yes will update xx

[Hollyboll]

No problem!

Look forward to updates. And hope you feel better to have some ideas meantime xx

[laszla]

 I was under their care but they discharged me last Feb when I "didn't answer the phone" for an appointment..... only my phone hadn't rung and I was waiting for their phonecall all afternoon....  I should have challenged this but I didn't have the energy or headspace to do it, so I just accepted it.[/quote]

Alex, I had numerous and worse episodes like this at Chelsea and Westminster but I decided that I would complain - partly because it's generally outrageous and affects lots of women, as well as for pragmatic, selfish reasons - they are I think one of only 2 (?) places in London who do NHS implants which I really needed to try. In short, complaining worked and the service has improved. But yes effective complaining does require a bit of time and effort, I think it's a question of determining if the potential benefits are worth the effort - in my case they were.

[KBallinger]

Sounds very similar to my journey 5 years ago.
I was also under a psychiatrist and tried various antidepressants. One combination was venlafaxine and mirtazepine , but this made me worse. It was mainly the venlafaxine which was heightening my anxiety. Once the venlafaxine was withdrawn and I was on mirtazepine alone it wasn’t so bad but not perfect. I had the genetic test done that , for me comfirmed, all the ssri’s I had tried and had an adverse reaction too was not indicated for me with my genes. I ended up on duloxetine.
However the biggest turn around for me was seeing a menopause specialist who diagnosed histamine intolerance and progesterone intolerance.  Unfortunately oestrogen can exacerbate histamine intolerance.
I followed a low histamine diet and took antihistamines and it changed so much for me I came off Duloxetine. I also took the drastic measure of an hysterectomy to avoid progesterone. I’m doing well now on oestrogen and testosterone.

[Alex 2024]

Sounds very similar to my journey 5 years ago.
I was also under a psychiatrist and tried various antidepressants. One combination was venlafaxine and mirtazepine , but this made me worse. It was mainly the venlafaxine which was heightening my anxiety. ....
However the biggest turn around for me was seeing a menopause specialist .... I’m doing well now on oestrogen and testosterone.

That' really interesting - sounds like I may be having similar reactions to you, I feel like it doesn't matter what I take or whether it's an increase or a decrease  the result is an immediate increase in anxiety which I then have to "tough out" for a few weeks to settle before the doc admits it's completely wrong for me. I'm so sick of being a "medicated guinea-pig" as it were.
Can I ask if your genetic test was in the UK and if so who with......? 
And it's interesting that you mention a menopause specialist - I was hoping Chelsea & Westminster was going to be a specialist service for me but alas, it wasn't to be.
I'm going to send some emails tomorrow and see if I can make some progress and maybe get myself on the waiting list at the Maudsley.
Lasla: well done for complaining it can be v difficult be also can really really help everyone. I made a massive complaint a few years ago about a London hospital. When I was phoned by the senior manager with platitudes expecting me to say yes ok I accept your apology I replied that it wasn't good enough . The end result was that a few weeks later I was invited to a meeting, chaired, recorded and minuted by PALS with 6 other senior members of the team and management all listening to what I had to say about my bad experiences for an hour. At one point I looked at one of them and saw she had tears in her eyes whilst I was explaining what I'd had to go through to manage my own health because they had let me down so badly.  I wish I could do that again, be more own health advocate as ferociously as I was then by I'm struggling too much at the moment.
I'll get there though, somehow, hopefully sooner than later xxx

[joziel]

The thing is, looking at that history you gave, you initially had chronic fatigue and then were prescribed the first anti-depressant.

From then onwards, it has been a cascade of being prescribed ever more or different meds to deal with the side effects (or sometimes can be withdrawal effects) of that first med. It becomes impossible to know what symptoms are due to the drugs.

Really, it would have been best to diagnose the actual cause of the chronic fatigue in the first place and then treat something to address that problem at source. Rather than just medicating to subdue one particular symptom. This is how menopausal women end up on 50 thousand drugs. And then more drugs to deal with the side effects of those drugs and difficulty getting off the drugs....

There are many causes of chronic fatigue.

[Alex 2024]

The thing is, looking at that history you gave, you initially had chronic fatigue and then were prescribed the first anti-depressant.

There are many causes of chronic fatigue.

Hi, thanks for your reply. I agree with you but..... I hadn't written that shortly after starting the Amitryptilene I suffered a series of very challenging life events compounded by not having any work (I'm self employed) which nearly sent me to a breakdown....  this didn't give me the chance to recognise that Amitryptilene didn't work for me and to withdraw from it and go back to just hrt only. I knew I needed something extra to help me cope. If life had been better things would have been different.
Looking back on it now what I hadn't recognised was that although the chronic fatigue meant that I could sleep around 12 hours a day, I was also depressed - it had been a slow decline that I hadn't noticed.
I was "seen" by the Royal Free Hospital for chronic fatigue in 2022. This was a 6 session group course on zoom where you were given advice on how to manage chronic fatigue. I found the course didn't help at all and in fact advised me to cut down on excercise, which I did, but this didn't help just made me more unfit and put on weight.
After this I gave up on trying to treat the chronic fatigue and just tried to do my best day to day.
If you've got any good advice on helping with chronic fatigue I'd be interested to read about it.
Thanks

[CLKD]

joziel makes a good point! 


"Yuppy flu" is what the medical profession in the late 1970s onwards decided fatigue as  .  Usually sets in after a virus which depresses the immune system and causes intense exhaustion.  I am told that gentle exercise when ever the sufferer feels able - too much and the body goes into free fall to build up energy again.

Classed as 'depression' it was treated as such - never getting to the causation.  There had to be something more as people were affected World Wide.  The body heals whilst sleeping which is why animals curl up for hours, however being in a society where appearing in the work place is expected, sufferers dragged themselves out of bed until the body said 'no more'.

My aunt was diagnosed with everything even to the point of having a hysterectomy.  Clutching at straws her GP was, for over 20 years.  She became withdrawn and unsociable.

Being hydrated: the pee should never be really pale as this can lead to other problems within the body.  The 2 litres a day was pushed by the bottled water companies.  We obtain liquids from most of what we eat/drink so keeping the urine the colour of straw is about 'right'.  Any darker and we need to drink more. 

Half a day at a time?  Try to get into the sunshine when possible to top up VitD levels as low levels can cause weariness.