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[joziel]

I think the first thing I'd check out, with chronic fatigue - is thyroid. Not just the usual TSH and free T4 tests which the GP does (because those can still be fine whilst things most definitely are not good) but a full thyroid panel.

As a starting point, Medichecks does an at-home Advanced Thyroid Panel which includes a lot:
TSH, free T3, free T4, thyroid antibodies for the thyroid (no reverse T3 unfortunately)
And also ferritin (which should be over 100, D3, B12 etc etc - lots of nutritional tests which deficiencies can also cause fatigue....

I think that would be a good starting point for you...

[K45]

Hi Alex

I was on Venlafaxine for about a decade and found withdrawing from it was extremely difficult. I was so anxious and overwhelmed that I thought I was relapsing but a few weeks later it was clear that my symptoms were down to withdrawal. Mirtazapine is much easier to come off and far less side effects. During perimenopause  I have found vitamin D, B12 and magnesium helpful. Once the venlafaxine (also known as Effexor)  is fully out your system you will hopefully feel a lot better. My GP told me it was known as Side-Effexor at med school because the side effects were so horrible in withdrawal! Hang in there. It will get better.


quote author=Alex 2024 link=topic=69240.msg942510#msg942510 date=1712398238]
Hi Everyone,
This is my first post! And wish I'd found this forum years ago
I'm 53 and have been on hrt for 3 1/2 years, definitely started peri menopause at age 47. I'm in the UK and have struggled with menopause prescriptions the whole time.  I use Everol patches and was using Utrogestan tablets but now have a mirena coil.
I Started taking Citalopram anti depressant at 47 to help deal with anxiety due to marriage break up. Citalopram, yoga, meditation served me well for a long time.
I stopped taking Citalopram in November 2023 as I felt it wasn't making any difference and it blunted my emotions. This was probably a mistake.
In April 2023 I started taking Amitryptilene to help with chronic fatigue. OMG what a mistake!!!! I went from sleeping up to 12 hours a day to chronic insomnia and feeling "wired" and very anxious. The doc advised to up the dose - so I did and suffered another "bump" as I adjusted to the dose for a few weeks and it didn't help. By this time my anxiety is through the roof - I'm in coping mode and believe the doc when she said it would help.
I switched Docs and now always talk to the menopause doctor at the surgery.  She switched me to Sertraline in September 2023 this didn't work either, suffered  a severe bump getting up to a dose of 50mg over a few months, by November 2023 I've written in my diary that I feel suicidal. I was having panic attacks as well. All the while I am in coping mode. Each day is a challenge. I know I need some sort of anti depressant to help but life is hell. The Doc changed me immediately from Sertraline to Venlafaxine. I gradually upped the dose of this to 112.5mg
In December 2023 I changed to the Mirena Coil because Utrogestan tablets made me feel worse around my period time than I ever did before peri menopause. This has only just settled down.
In February 2024  I changed my Everol patch from 75 to 100. Previously doing this had increased my anxiety and a blood test came up as 866 for Oestrogen s I switched back again. Changing up again increased my anxiety and didn't stop the horrendous nights sweats that I started having around 4 months previously.  I had a blood test after 5 weeks and my oestrogen was 566. Which seems a good amount as the upper limit is 800 so I'm still on 100 patch.
I saw a psychiatristrist 8 days ago (something I never thought I'd need to do) and he advised me to cut back Venlafaxine and add in Mirtazapine.
So here's where I'm at right now......
Everol Patch 100
Mirena Coil
Venlafaxine 70 mg (cutting down as of 8 days ago)
Mirtazapine 15 mg (started 8 days ago)
The Mirtazapine knocks me out at night (except for one random night of insomia - got one hours sleep) but I CANNOT wake up in the morning, previously waking up at 5am naturally, now wake up with alarm at 7am but feel very woozy and spend 2 hours drifiting around on the internet before I panic and get up. I'm then in fight or flight mode and feeling tense most of the day until I start relaxing around 8pm when I start my bed time routine.
I should add that I'm a naturally thin person and have very severe reactions to starting anti depressants - I usually need to start on less than half the recommend amount for other people. However, Menopause meant that I gradually went from 8.5 stone to 11 stone 2lbs until I started this hideous anti depressant rollercoaster in April 2023 and lost all the weight back again in around 3 months. I would now like to put on a bit more weight.
My questions are: I "think" my hrt are about right for me at the moment - but if anyone has comments on this I'd like to read them
I really don't think Venlfaxine suits me, but I'm already on it and every change I make puts me though increased anxiety hell yet again. Has anyone had a similar experience to this and what was the outcome?
I will stick with trying the Mirtazapine for at least another week, has anyone tried this with Venlafaxine and what did you think?
A friend said she thought there was a blood test that is primarily used in the USA that tests which anti depressants will work for you and which won't. Does this sound familiar to anyone in the UK? - is it possible to get it here and have you managed to get an nhs Doc to interpret the results for you. Has anyone got a link to this and any advice?
..... I'm really sorry this is such a long and complicated post but as you can tell I've been going through hell for a very long time and am coping (because I always will through sheer determination) but really want to sort out this mess.
Thanks for reading and am hoping you can help xx
[/quote]

[Alex 2024]

Hi Everyone,
Here's an update:
KBallinger: Thanks for your comments, that's very interesting, sorry to hear you decided to have a hysterectomy but I understand how you could reach that decision. Can I ask where you got your genetic test? And also your menopause specialist?
CKLD - I've no idea about the connection between a virus and CFS/ME/Yuppie flu all I know is that my diagnosis was that of medium CFS and it was a diagnosis by elimination. The treatment was simply managagement. I've had a fair few thyroid tests over the years and all come back completely fine.
Hydration: for me to get my pee to be pale straw colour I have to drink a lot of extra water during the day, it wouldn't be pale enough if I only got my water from food. I've been taking a Vit D supplement throughout the winter. Sounds like your aunt had a horrific experience, sorry to read that.
Joziel: thanks for your comments,v helpful.
K45: thanks too for your comments. Wow! and Uh-oh! to the withdrawal problem

So last night I decided to cut back Mirtz to only 7.5mg because 15mg is just far too much for me at once. I think it's the right decision atm so thanks everyone for your support and help as I don't think I'd have made that decision without you. I NEED to function today - I have my son and his friends to look after today- life goes on (thank God!) and you have to roll with it. I do feel a little clearer this morning (phew!)

Also: I heard back from Genesight. They cannot send me a test as "Thank you for your interest in the GeneSight® test. Unfortunately, due to international customs and regulations regarding human DNA samples, we are unable to offer GeneSight testing internationally at this time" . Which makes perfect sense - something I hadn't considered.

I phoned GP London and they will do a CP450 test without a referral. If I wanted someone to interpret the results they could recommend a psychiatrist. Interestingly they couldn't find the test on their website and phoned me back. When phoned back they initially said it would be "£615 but we'll honour the price of £536 on the website" - she thought I was phoning about the price and service on the Doctor's laboratory site, she was confused. It was clear that GP London and Doctor's laboratory are linked in someway, I'm guessing they're different brands/service with the same lab/parent company. The cost of interpretation by a pschiatrist with GP London would be £150 which makes a total of £786. Doctor's lab themselves won't do a test without a refferal. Phoning myogenes was the best experience. Instead of a blood test you do a cheek swab. Included in the price is a 30 minute zoom consultation with a doctor. Guess what the price is...? £786 .... do I think all three of different brand of the same service - yes I do (though of course I could be wrong). The downside to the myogenes service is that if I can't get my psychiatrist onboard with this then their cost for a doctor to interpret for me is £250 so actually that would come out as £1,036.

This is very frustrating as the cost with US based Genesight is just $330 ..... but then this is very new to the UK and it's just where we're at right now.

I also emailed my psychiatrist with my progress and asked if he would support me to do the testing.... I'll wait and see what he has to say...

I booked an appointment with a GP which I'll use to ask about a referral to the Maudesley and also ask about Thyroid testing again.

Thanks so much everyone - all your comments are food for thought, supportive and yet also slightly challenging (the CFS comments) but challenging is also good - we all need that sometimes. I feel I've found a supportive community which I really need.

I'll keep updating on my progress and reply to all comments. xx

[Penguin]

Thanks for the update, that is good to know (albeit disappointing) re Genesight as I'd pinned my hopes on that one in particular.
When you say offer the same service do you mean they test the exact same gene? Which is the company you don't need a referral with?
I am seeing psych in a few weeks so will ask as well. This may well end up being the way forward for those of us struggling to find the right mental health meds so it's be good to pool and share this information on how helpful each test/ approach is.
Penguin x

[Alex 2024]

Thanks for the update, that is good to know (albeit disappointing) re Genesight as I'd pinned my hopes on that one in particular.
Penguin x

Yes so had I..... however - didn't have the time to write earlier that hey said that if you had a holiday to the US you could use their portal to order the test and of course just sent it back. So that's one option - if you're lucky enough to be able to travel for work or holiday then it's a no brainer. ...? Would be interested to know if anyone does this as I haven't read experiences of any who has used this service. So can only take a "looks good but haven't tried it" approach.

The company you don't need a referral with is GP London..... well, so far, but there's something I'm not sure about between them and doctor's laboratory and I'm waiting to receive a second phone call back from them - which may not happen until tomorrow. I'll update when I can.

I am DEFINITELY feeling better on a lower dose of Mirtazapine..... I find this so frustrating that it doesn't matter how many times I tell doctors that I'm super sensitive to any medication and change they ignore me...! The only person who didn't was a wonderful GP I had until a couple of years ago but unfortunately she moved away. Her care made a huge difference to my health.

[Penguin]

Thanks for the update, that is good to know (albeit disappointing) re Genesight as I'd pinned my hopes on that one in particular.
Penguin x

Yes so had I..... however - didn't have the time to write earlier that hey said that if you had a holiday to the US you could use their portal to order the test and of course just sent it back. So that's one option - if you're lucky enough to be able to travel for work or holiday then it's a no brainer. ...? Would be interested to know if anyone does this as I haven't read experiences of any who has used this service. So can only take a "looks good but haven't tried it" approach.

The company you don't need a referral with is GP London..... well, so far, but there's something I'm not sure about between them and doctor's laboratory and I'm waiting to receive a second phone call back from them - which may not happen until tomorrow. I'll update when I can.

I am DEFINITELY feeling better on a lower dose of Mirtazapine..... I find this so frustrating that it doesn't matter how many times I tell doctors that I'm super sensitive to any medication and change they ignore me...! The only person who didn't was a wonderful GP I had until a couple of years ago but unfortunately she moved away. Her care made a huge difference to my health.

So do you have to get the blood draw done in the US or, could someone who is travelling there for work, pick the test up and bring it back to UK, and then you send it back via post?

I've asked someone to find out for me whether the UK test CYP450 is the same offered by Genesight. I don't know if more genes are involved in the Genesight one or not, given they list over 60 drugs they test. I am a little confused because I thought it was not just about your metabolising gene, but also about how up or down regulated your other neurotransmitter pathways are in general
 For example  my MOAO is slow which means I find it hard to process / get rid of certain neurotransmitters when my body produces them or drugs that influence them are added. That isn't CYP450 but I know so little that perhaps MOAO comes under the umbrella of the metabolising test. Sorry if I am making this sound more complicated than it is, I just don't want either of us spending that amount of money out unless it will actually give us the answers we need.

Perhaps Laszla will know more, hopefully she'll come back on and see this!

I too am sensitive to meds and initial estrogen dose of 2 pumps was far too high. I am still on half the standard dose of citalopram and even have a hard time with side effects from antibiotics. Haha I am a sensitive little flower. But it is hard to get anyone in the conventional medical field to believe that the reactions/ side effects are as a result of the drugs, rather than menopause in general or anxiety (which is what is always levelled at me). I mean, I've never had reflux in my life, hrt caused reflux, will the GP believe it even when the reflux is cyclical and timed with the progesterone phase? Nope, my reflux is caused by anxiety apparently so I totally get where you're coming from needing lower doses of things.

[laszla]

Good to hear you're better Alex. I'm not surprised that gp London and Doctors Laboratory are connected - my thought/hope when suggesting you call them was that they would connect the dots in terms of 'interpreter', blood drawer etc. But of course the price remains high.

[CLKD]

Reflux may be caused by laxity of muscles. As oestrogen levels drop muscles can become lax.  I had indigestion over the years which became worse in my mid-30s. 'omeprazolol' eases the irritating clearing of throat!

GPs don't seem to be pliable ........... if it's anything out of the 'ordinary' many seem afraid to engage with the whole patient.   

I react to most ABs = severe nausea and I rarely complete a course.  It would be better 4 me to have it via a drip  .  However, at my age I would probably trip over the drip stand ? 

We know our bodies best. 

[Penguin]

Reflux may be caused by laxity of muscles. As oestrogen levels drop muscles can become lax.  I had indigestion over the years which became worse in my mid-30s. 'omeprazolol' eases the irritating clearing of throat!

GPs don't seem to be pliable ........... if it's anything out of the 'ordinary' many seem afraid to engage with the whole patient.   

I react to most ABs = severe nausea and I rarely complete a course.  It would be better 4 me to have it via a drip  .  However, at my age I would probably trip over the drip stand ? 

We know our bodies best.

Maybe in some cases. But mine isn't caused by that. Mine is a direct result of taking hrt and the progsterone phase in particular. It goes at the end of each month when I stop the utrogestan. I hate that stuff but it's the only non synthetic progesterone available so if I stay on hrt then I'm stuck with it.

[laszla]

I've asked someone to find out for me whether the UK test CYP450 is the same offered by Genesight. I don't know if more genes are involved in the Genesight one or not, given they list over 60 drugs they test. I am a little confused because I thought it was not just about your metabolising gene, but also about how up or down regulated your other neurotransmitter pathways are in general
 For example  my MOAO is slow which means I find it hard to process / get rid of certain neurotransmitters when my body produces them or drugs that influence them are added. That isn't CYP450 but I know so little that perhaps MOAO comes under the umbrella of the metabolising test. Sorry if I am making this sound more complicated than it is, I just don't want either of us spending that amount of money out unless it will actually give us the answers we need.

Perhaps Laszla will know more, hopefully she'll come back on and see this!

According to Mayo Clinic: "The cytochrome P450 enzyme includes the CYP2D6 enzyme, which processes many antidepressants and antipsychotic medications. By checking your DNA for certain gene variations, CYP450 tests can offer clues about how your body may respond to a particular antidepressant. CYP450 tests can also identify variations in other enzymes, such as the CYP2C19 enzyme."

In other words, the CYP450 test includes various pathways and enzymes and definitely sounds like the relevant test for determining reactions to certain ADs.

[Penguin]

I've asked someone to find out for me whether the UK test CYP450 is the same offered by Genesight. I don't know if more genes are involved in the Genesight one or not, given they list over 60 drugs they test. I am a little confused because I thought it was not just about your metabolising gene, but also about how up or down regulated your other neurotransmitter pathways are in general
 For example  my MOAO is slow which means I find it hard to process / get rid of certain neurotransmitters when my body produces them or drugs that influence them are added. That isn't CYP450 but I know so little that perhaps MOAO comes under the umbrella of the metabolising test. Sorry if I am making this sound more complicated than it is, I just don't want either of us spending that amount of money out unless it will actually give us the answers we need.

Perhaps Laszla will know more, hopefully she'll come back on and see this!

According to Mayo Clinic: "The cytochrome P450 enzyme includes the CYP2D6 enzyme, which processes many antidepressants and antipsychotic medications. By checking your DNA for certain gene variations, CYP450 tests can offer clues about how your body may respond to a particular antidepressant. CYP450 tests can also identify variations in other enzymes, such as the CYP2C19 enzyme."

In other words, the CYP450 test includes various pathways and enzymes and definitely sounds like the relevant test for determining reactions to certain ADs.

Ah that's great, thanks for explaining that!

[ConfusedAboutHRT]

Dear Alex,
I’m really sorry to hear of your difficulties. From my perspective, anxiety is a hideous thing and I have been struggling with it for years.
I’d like to reiterate what others have said about tapering and not doing alternate days. Some people are more prone to withdrawal and some drugs have shorter half lives (making withdrawal harder). Having done a LOT of research trying to help myself, and having seen a number of GPs and psychiatrists over the years for depression/anxiety, I can say with confidence that some people have very bad withdrawal and the only safe way to manage that is a very gradual tapering using liquid. This is what I did the last I came off AD as my previous experience of withdrawal was horrendous. There are forums online of the hundreds and thousands of people who have suffered withdrawal (the forum is founded by a DR with huge experience about researching withdrawal. And for years most psychiatrists and GPs would tell you there’s no such thing, it’s just your symptoms coming back). I lowered my dose of citalapram by 1mg and stuck with that for 3 weeks, then another 1mg for 3 weeks and so on. I actually had a verbal fight with the psychiatrist (in Ireland) to go this slowly and do the liquid route. But I know me better than she knew me and I know what I went through years before. I know some people who can half their drug for a few weeks then half again, and they are fine. I definitely wasn’t and no psychiatrist was going to tell me to harm myself. GPs know virtually nothing about AD other than what the patient information leaflet says in the packet. They don’t call it “practicing medicine” for nothing. It really bothers me that for a lot of people with depression/anxiety are given a cocktail of drugs and swapped and changed.  Mental health treatment feels like an experiment. Apologies, I’m ranting a bit, but after years of bad and harmful advice, I’ve had my fill. I’m sure little of what I’ve said is useful, but I am thinking of you.

[ConfusedAboutHRT]

P.S. if there is a DNA test to ID which drugs would work for you, that sounds amazing (get your Dr to verify though). It would also be a travesty that it’s not more widely known or done on the NHS, given the impact on taking drugs that don’t help or make you worse.

[Alex 2024]

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

[joziel]

Sorry to be the bearer of more confusion  but re

"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."

You won't get a full thyroid panel done via your GP. They will only test TSH and free T4. You need free T3, thyroid antibodies and ideally reverse T3/rt3 done as well. As I said before, Medichecks .com offers an 'Advanced Thyroid' panel test which includes a bunch of other things which are good to test (B12, D3, ferritin etc). It includes all the thyroid tests except rT3, but is a great place to start....