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Author Topic: Desperate for advice  (Read 6542 times)

Freckles

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Re: Desperate for advice
« Reply #15 on: August 16, 2016, 01:16:02 AM »

No, not read "that woman" thread yet- where is it?
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CLKD

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Re: Desperate for advice
« Reply #16 on: August 16, 2016, 01:08:49 PM »

Will bump it:  'strange woman in my house' thread …..
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jobeckett

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Re: Desperate for advice
« Reply #17 on: August 16, 2016, 03:55:53 PM »

Hi Freckles,

Lovely to meet you and thank you so much for taking the time to write all of the below.  It is most appreciated and helpful.

Yes I'm very wary of being prescribed HRT by my GP – simply because as you mention below, one size doesn't fit all and having been through the last 2 years with agonising symptoms (mainly this morning chronic anxiety which takes me about 2 hours and a lot of meds to come down off the ceiling just to be able to get on with my working day) I'm somewhat reluctant to go through another 6 months of ‘testing various different HRTs' to see what works.  I was initially prescribed AD's 18 years ago during a particularly bad patch and unfortunately was prescribed them for 18 years.  I made the decision to change them a year ago as they were not controlling my symptoms anymore, but the changes didn't help and with one particular med, it made things 10 times worse.  I cannot take high dosage as it zombies me out.  So it's def hormonal but as I think I'm prone to anxiety/depression, I don't know whether I will continue to need them if I start hormone therapy as well.  It gets a bit confusing for me but I long to find a solution with as few meds as possible.  I'm sure the side effects have their own place in making me feel so bad.

What I mean by ‘Biodentical' (known as BHRT), is whereby you visit a private practitioner, similarly like you did with Prof John Studd, and they do a complete hormone blood screening to assess your levels in order to identify where help is needed ie: low oestrogen etc.  Thereafter they make up the correct hormone compounds from natural plants mostly I believe (nothing synthetic at all, more in line with what your body creates naturally) for each individual patient.  This is monitored every few months to start with until they get the levels correct and then with any luck, once you have managed to find the right dosage, you only need to re-visit once every 6 months or annually.  So very similar if not the same to what Studd does for you although I am not totally clear whether he uses synthetic HRT or natural biodentical hormones.  However, he sounds great and this kind of treatment is what I have been researching.  It's just a shame the outlay in cost is pretty high but I agree that it is worth EVERY penny if you can find the right person / solution.  I've been recommended to check out a GP/Holistic lady http://www.drsohereroked.co.uk/ who I have had email communication with, along with another BHRT practitioner at the Hale Clinic in Regent's Park.  Both have similar fees to what you have been charged. 

If I had a spare £1k right now I would prefer to either see your guy or one of the others I've been in contact with (which one being the million dollar question).  I really like the sound of Studds though – particularly as he diagnoses on history, and not blood tests – this make logical sense.  However, you have certainly given me some hope that perhaps my GP can do some of it ie: hormone tests (although I've tried this before and had my oestrogen and progesterone tested about 2 years ago which came back ‘normal') so I'm not actually convinced the NHS can carry out the right tests (or rather my GP knows what to ask for).  I would be grateful if you could advise me on what they are called as I have an appnt with her this coming Monday and would like to discuss this with her again.

Any further info that you think would be beneficial I would love to read.

Thanks again
Jo x

Hi Jo
Welcome!
I had symptoms of anxiety and depression when I was peri-menopausal and was originally out on HRT tablets (Femoston 1/10) which worked okay for the first six months (this was five years ago) but over time didn't and for the past two years had horrible psychological symptoms but no hot sweats. I finally worked out it was probably low oestrogen levels as I had all the symptoms, asked my GP for an increase; she refused, saying I needed to be weaned off HRT, and wanted me to go on AD's which I didn't want to do. My oestrogen levels were 72, which is lower than most men's!
Long story short, I saw Professor John Studd privately in April this year and have done really well on his regime and feel better than I have done for years.

 He prescribed oestrogen (Estrogel) gel continuously (transdermal oestrogen gels or patches are a far safer and far more effective option than HRT tablets), a very tiny daily dose of Testim (testosterone) and micronised progesterone (Utrogestan) tablets which I take at 100mg for 7 days each months (in order to get the necessary withdrawal bleed).

It cost me £300 to see him for the initial assessment and there is follow up at 3 months and then every 12 months after that.  I got my hormone tests done on the NHS which he accepted so I did not need to pay for his private blood tests (which from memory, was about £300 and included everything from vitamins levels to hormones).  I also get all my HRT prescribed on the NHS as he wrote to my GP, although his  private prescription for 3 months of HRT is about £70 to £90 in total to get dispensed.
Studd also goes by symptoms and medical history, as well as hormone levels and he certainly did not insist on having unnecessary blood tests at additional expense to me

It's a shame I had to pay to see him, but I had no other option as clearly my GP wasn't interested. 

I'm not entirely clear about what you mean by "bio-identical hormones" as that term seems to be used in different ways by different clinicians. Certainly from all the formal clinical research I have read, Studd's treatment regime is considered "bio-identical" and also the use of progesterone creams have limited, if any clinical efficacy. I think they and other alternatives seem to work because hormonal levels fluctuate when you are peri-menopausal  so some women think they are effective when in fact it's their natural hormones kicking in, not the herb or cream.
He also suggests that peri-menopausal women with a history of what he calls "reproductive depression" (i.e. hormone responsive depression, such as history of depression being worse before a period, PMS, PND, feeling fine during pregnancy, PMS returning as periods return, recurrent cyclical depression, react badly to progesterone whether oral or depot,  etc.) need HRT and not AD's as the latter as likely to be ineffective in treating the underlying hormonal cause

He argues that peri-menopausal women often recognise they have hormonal depression but because their oestradiol and FSH fall within a "normal range",  GP's often brush them off and prescribe AD's.  When AD's often fail, usually they will be given a second AD, at a higher dose and are often misdiagnosed as having  conditions such as Bi-Polar Disorder, recurrent depressive disorder, generalised anxiety disorder, borderline personality disorder, etc.
He also says that diagnosis should be made on history, and not blood tests and that HRT is usually has a better response to depression/anxiety rather than AD's.
 
As you'll gather,  I am a fan of Studd's treatment regime, as are many other women on here who have either seen him or got the same treatment via the NHS.  Personally I've found his treatment regime to be  life changing. I feel better now after 4 months than I have for years and for me it worth every penny to see him.  Ideally it  should be available on the NHS, whether via a GP or Menopause Clinic, but from many of the posts on here, sadly that is not always the case. 

HRT should be the right hormones, at the right amount and the right format of delivery for the individual but often it's a "one size fits all" approach in the NHS, which I think leaves some women giving up on HRT as they are given the wrong treatment and feel worse on it as a result.
 
Look around on the forum and read previous posts and views to get as much info as possible.

I knew very little about HRT before deciding to see Studd  and the whole range of options , but after lots (masses!) of research, feel I made the right choice.
If you want any more information and/or clinical articles do PM me and I'll be happy to forward them on.

Sorry for the long post!
Good luck.
Freckles x
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jobeckett

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Re: Desperate for advice
« Reply #18 on: August 16, 2016, 03:56:43 PM »

Hi Freckles,

Lovely to meet you and thank you so much for taking the time to write all of the below.  It is most appreciated and helpful.

Yes I'm very wary of being prescribed HRT by my GP – simply because as you mention below, one size doesn't fit all and having been through the last 2 years with agonising symptoms (mainly this morning chronic anxiety which takes me about 2 hours and a lot of meds to come down off the ceiling just to be able to get on with my working day) I'm somewhat reluctant to go through another 6 months of ‘testing various different HRTs' to see what works.  I was initially prescribed AD's 18 years ago during a particularly bad patch and unfortunately was prescribed them for 18 years.  I made the decision to change them a year ago as they were not controlling my symptoms anymore, but the changes didn't help and with one particular med, it made things 10 times worse.  I cannot take high dosage as it zombies me out.  So it's def hormonal but as I think I'm prone to anxiety/depression, I don't know whether I will continue to need them if I start hormone therapy as well.  It gets a bit confusing for me but I long to find a solution with as few meds as possible.  I'm sure the side effects have their own place in making me feel so bad.

What I mean by ‘Biodentical' (known as BHRT), is whereby you visit a private practitioner, similarly like you did with Prof John Studd, and they do a complete hormone blood screening to assess your levels in order to identify where help is needed ie: low oestrogen etc.  Thereafter they make up the correct hormone compounds from natural plants mostly I believe (nothing synthetic at all, more in line with what your body creates naturally) for each individual patient.  This is monitored every few months to start with until they get the levels correct and then with any luck, once you have managed to find the right dosage, you only need to re-visit once every 6 months or annually.  So very similar if not the same to what Studd does for you although I am not totally clear whether he uses synthetic HRT or natural biodentical hormones.  However, he sounds great and this kind of treatment is what I have been researching.  It's just a shame the outlay in cost is pretty high but I agree that it is worth EVERY penny if you can find the right person / solution.  I've been recommended to check out a GP/Holistic lady http://www.drsohereroked.co.uk/ who I have had email communication with, along with another BHRT practitioner at the Hale Clinic in Regent's Park.  Both have similar fees to what you have been charged. 

If I had a spare £1k right now I would prefer to either see your guy or one of the others I've been in contact with (which one being the million dollar question).  I really like the sound of Studds though – particularly as he diagnoses on history, and not blood tests – this make logical sense.  However, you have certainly given me some hope that perhaps my GP can do some of it ie: hormone tests (although I've tried this before and had my oestrogen and progesterone tested about 2 years ago which came back ‘normal') so I'm not actually convinced the NHS can carry out the right tests (or rather my GP knows what to ask for).  I would be grateful if you could advise me on what they are called as I have an appnt with her this coming Monday and would like to discuss this with her again.

Any further info that you think would be beneficial I would love to read.

Thanks again
Jo x
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Hurdity

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Re: Desperate for advice
« Reply #19 on: August 16, 2016, 04:20:43 PM »

Hi jobeckett

 :welcomemm: from me too!

Sorry to hear about your difficulties and also being put on ADs for what appears to be hormonal problems.

However the NHS does recognise menopause and there is a good system for treating it - the problem lies with some of the practitioners who because they are General - can be blinkered limited and outdated in their knowledge and views.

The NICE Guidelines released last year make it quite clear that women of your age with menopausal symptoms and irregular periods (cycles varying persistently by more than 7 days) are peri-menopausal (if other issues are ruled out through appropriate tests) and should be treated with HRT and not ADs, especially as in your case you are under the natural average age of menopause of 51/52 so actually need oestrogen to help protect heart and bones!

As has already been said by several members - bio-identical hormones are obtainable on NHS - and are strictly hormones that are identical to those produced by our own body, not to be confused with "Bio-identical Hormone Replacement Therapy" as practised in US, Aus and in a very limited way in UK.  I am puzzled as to why your GP would mention the FDA in a UK appointment? Bioidentical hormones are all those containing Estradiol  - which are most of them except the PRE- ones (the horse oestrogens), and progesterone - currently the only one licensed for HRT is Utrogestan.

Find a GP in your practice who understands menopause and is willing to prescribe HRT - you do not need blood tests except to rule any of other reason for your symptoms and as a basic background check at this stage in your life - or if necessary change practice or as suggested ask to be referred to a menopause clinic asap - this should be straightforward in London. Nick Panay would be a good one - but there is a long wait I think. The specialists are all listed on this site (very top tabs in blue).

If you are not experiencing hot flushes then it is probably the ADs working - they are best prescribed for this purpose for women who cannot take HRT eg due to breast cancer.

I have been happily using oestrogen patches and progesterone for almost all the 9 + years I have been on HRT. Bio-identical and nil-by-mouth have been my motto from very early on.

Hopefully I haven't repeated too much what others have said and hope it's helpful!

Hurdity x
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Hurdity

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Re: Desperate for advice
« Reply #20 on: August 16, 2016, 04:30:12 PM »

Hi again jobeckett

I wrote my post before seeing yours and went off to do something else before finishing it - so some of it may have been answered - hope it is still of some use :)

Just to add that yes I know what you mean by BHRT. However all the hormones they use are synthetic in that they are manufactured from raw ingredients just as estradiol is. None of it is natural - "BHRT" hormones, and bio-identical hormones used on NHS - or all of it is - if you see what I mean. This is a con trick by the compounding pharmacy industry (as far as I know - Dana is the one who is hot on all of this!!). All the hormones have to be synthesised from raw plant ingredients and the molecular structure changed so as to be human. BHRT pharmacies probably get their basic ingredients from the same place that Big Pharma does. They cannot give you the right amount based on blood tests as these bear no direct relation to symptoms - except in a very crude way.

If blood tests are carried out they are usually FSH, sometimes oestrogen (estradiol). Private practitioners will sometimes tests for Testosterone but others do not - as the lab ranges of the tests are designed for men. Some private people test for progesterone but if you are menstruating at all then this is unnecessary as you will be producing enough.

Pity about the Serenity cream - another big con I'm afraid. There is no convincing repeatable scientific evidence demonstrating its efficacy either in helping with menopausal symptoms such as hot flushes, nor in protecting the womb (which is necessary when oestrogen is added).

Hurdity x
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jobeckett

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Re: Desperate for advice
« Reply #21 on: August 16, 2016, 05:03:23 PM »

Hi Hurdity,

Thank you for your welcome and message :)  Good to meet you!

I had no idea that the NHS can prescribe hormones that are identical to those produced by ourselves - that's great to know although I know what you mean about some GP's being outdated, mine is young and wont have any personal knowledge of PM or Men but this information is so useful that I feel I can now start making informed decisions when discussing HRT.  I have heard/read a lot that the pills are not good and patches preferable, but I guess I automatically thought that NHS HRT is all synthetic.  What I now realise it that it depends on the correct amount of the necessary hormones needed per individual instead of just dishing out a patch or pill.  I'm so new to all of this that I feel I've entered a different world - this hormone, that hormone - it all gets confusing, especially when I'm such strong high blood pressure meds (that don't really do the job as well as they could) and my short term memory is completely shot!!

I should point out that we have already discussed HRT recently.  She feels she has tried to help all of my various symptoms by treating them individually with specific meds but now feels that due to my age 49 (I am still bleeding but erratically and have been for the past year - the longest I've been without is 3 months) it's time to look at HRT.   I've had 4 x full blood count tests done over the past year - they revealed a high white cell count (neutrophila) where I was then referred to Haematology at St Mary's London.  After a full blood screen and a CT Scan (a chest x-ray showed a lung shadow - since ruled out as anything sinister) my results came back normal, apart from this slight raise in my neutrophils (told that was down to smoking).  So we have ruled out anything else, it's just hormonal.  Thankfully I've never suffered from PMS or had any trouble with my periods so all of this is like having ALL barrels pointed at me!

I started having mild flushes a month ago which lasted for a few weeks and then stopped.  The AD's have been in my system for so long now that I'm not sure whether they are controlling those particular symptoms - they may well be keeping them manageable but they're certainly not aiding the anxiety and low mood. 

Nick Panay sounds great, as does John Studds and I def feel as though I need to see a gynae to get the correct dosage and as natural as possible. 

Is there a recommended time limit on these biodentical hormones?  My GP said that if/when I go on them I can only do so for 5 years due to the 'guidelines' - this would indicate to me that she's got synthetic in mind or am I wrong?

Your advice has been really helpful, thank you so much.
Jo x

PS:  I've just seen your 2nd post too - this is fascinating!  I am so not surprised about the pharma industries!!! Would you recommend I see a Gynae as opposed to just getting patches from my GP though?  Thanks again x



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CLKD

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Re: Desperate for advice
« Reply #22 on: August 16, 2016, 08:28:25 PM »

I think that Hurdity has explained 'bio-identical' really well. 

I will add that in the UK NOTHING can be prescribed without it having been cleared by NICE - everything is synthesised, there are not ENOUGH plants in the World to take natural products from to supply every person who needs medicines ::) so Scientists, like my husband, find out what is in each plant and 'make' the compounds. 

If your GP has a good knowledge about menopause then why go to a Gynae.?  Are you in the UK, I can't remember (meno-brain symptom  ::)). 

Stop reading elsewhere!  MM is the place to be, to ask questions from as it's Clinician run and set up for ladies with hormonal problems at this time of Life. 

How long do you believe that ADs stay in the body?   For me: having taken 4 different kinds since 1991: after 36 hours I know if I've missed a 5mg dose because I become depressed.  They don't stay in the system very long though weaning off can be difficult with kickback symptoms.  I have been lucky in that it's been several years on each AD B4 the brain becomes used to the combination.

Browse round here.  Make notes!
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Hurdity

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Re: Desperate for advice
« Reply #23 on: August 17, 2016, 09:06:55 AM »

Hi jobeckett

Your GP is wrong. There is no time limit to any HRT although some out of date practitioners would have you believe this is the case.  The 5 year rule was based on the outdated large HRT study when various cancer risks etc increased after 5 years and in older women. You can read the NICE Guidelines starting here: https://www.nice.org.uk/guidance/ng23. Provided you understand the risks such that they are and you are not medically contra-indicated for HRT you should be able to take it as long as you like.

In any case if you are under 60 the benefits are thought to equal the risks, and up to the natural avergae age of menopause as I mentioned - of 51/52 - the risks don't count because you should be producing your own oestrogen anyway. There are more risks from not having oestrogen from early menopause than taking it artificially!
Here is the info on this site:  http://www.menopausematters.co.uk/balance.php

Better not to refer to them as bio-identical hormones in case a GP with limited knowledge assumes you mean BHRT. If you refer to them as oestrogen ie estradiol and progesterone as in - micronised progesterone (not to be confused with synthetic ones called progestins or synthetic progestogens) and only available as Utrogestan as part of HRT - then you can't go wrong.

Re the Big Pharma and the ingredients for all the bio-identical hormones - I am just surmising that since they are all produced in a lab/factory to certain standards of purity etc. I once tried to trace the manufacture of estradiol that forms the basis of all these hormones but didn't get very far.

In terms of the correct dosage - the right dosage is how you feel after settling down onto one regime - but if you are peri-menopausal unless you suppress ovulation how you feel will very throughout the course of your menopause. The most important aim is for you to feel better overall more of the time on HRT than off it! Varying the oestrogen dose is straightforward, but varying the progesterone to less than the licensed dose needs to be done under supervision due to risks of endometrial thickening.

You don't need to see a gynae - just a GP who understands HRT and menopause and is sympathetic. Those who have had to go privately have had problems with NHS presumably in their region but persistence - as in finding right NHS practice or treatment - should pay off. Personally I feel it is important for as many women as possible to challenge outdated information and views and to argue their case (in the nicest possible way of course  ;)).

Hurdity x

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jobeckett

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Re: Desperate for advice
« Reply #24 on: August 17, 2016, 04:29:56 PM »

Yes I am based in London, UK. I'm not sure how good my GP's knowledge is but she's been the best GP I've had for a long time so I'm hoping she'll be sympathetic. listen to my concerns and not just prescribe the tablets (which she has already mentioned).  I'm guessing it's a question of cost ie: tablets over patches? 

This is a great forum and I've stopped reading elsewhere.  I am making notes but it's like learning Japanese as I too suffer from terrible memory problems (I used to be as sharp as a knife but now I'm just in 'fog').  The more I read, the more different opinions I see so that tends to make me a little confused.

But I'm researching as you lovely ladies have suggested and hopefully I'll find the right path.  I don't know why I'm so fearful of HRT but taking AD's, Hypertension meds (x 3), sleeping tabs, valium for the unbearable days (most days) can't be any better for me!

Thanks again for your help x



I think that Hurdity has explained 'bio-identical' really well. 

I will add that in the UK NOTHING can be prescribed without it having been cleared by NICE - everything is synthesised, there are not ENOUGH plants in the World to take natural products from to supply every person who needs medicines ::) so Scientists, like my husband, find out what is in each plant and 'make' the compounds. 

If your GP has a good knowledge about menopause then why go to a Gynae.?  Are you in the UK, I can't remember (meno-brain symptom  ::)). 

Stop reading elsewhere!  MM is the place to be, to ask questions from as it's Clinician run and set up for ladies with hormonal problems at this time of Life. 

How long do you believe that ADs stay in the body?   For me: having taken 4 different kinds since 1991: after 36 hours I know if I've missed a 5mg dose because I become depressed.  They don't stay in the system very long though weaning off can be difficult with kickback symptoms.  I have been lucky in that it's been several years on each AD B4 the brain becomes used to the combination.

Browse round here.  Make notes!
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Hurdity

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Re: Desperate for advice
« Reply #25 on: August 17, 2016, 05:35:02 PM »

Do read the info on the main site though (top tabs) - this is where all the up to date information is, and includes latest news and research, press articles on menopauase etc - and often links to the original research, NICE Guidelines etc. It's all there. The forum is great for advice and support but it is just the chat part really!

There are lots of other good sites too - for example all the menopause societies: British Menopause Society, North American Menopause Society, European Menopause Society, International Menopause Society - thees are the professional menopause orgnaisations and will have position statements and fact sheets. Then there is RCOG (Royal College of Obstetricans and Gynaecologists) who also produce lots of info and some publications on the web. Women's Health Concern (patient arm of the BMS) and many more. The ones to avoid are the ones where someone is selling stuff or their services (some of these are cunningly disguised as info sites with the product in a different place). Many of these are US based as they don't have the NHS and there are lots of independent practitioners with their pet theories.

The best thing to do is to read as much information as you can - and form your own opinion - as you say even based on the same info there are lots of different opinions!

You're right about all the other meds (but obvs BP meds are needed if you can't control it in the usual ways  - exercise, reducing body weight, stopping smoking, reducing salt etc)! At least with bio-identical hormones you are taking replicas of what is in your body.

Re tablets vs patches - I am sure docs will initially think to prescribe tabs in the first instance because they are cheap and convenient and many women are used to taking a pill a day from the CCP or mini pill. However the doc can't use the cost excuse if you provide a well-argues case for transdermal - ie not wanting to take any HRT by mouth due to digestions - stomach issues and metabolism by the liver - so that the estradiol goes straight into your bloodstream.

Keep us updated :)

Hurdity x
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jobeckett

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Re: Desperate for advice
« Reply #26 on: September 07, 2016, 04:14:08 PM »

Hello ladies,

I've been off line for a few weeks but have finally managed to see my GP today and have bitten the bullet with regards to taking HRT.  I became so desperate that I decided to try it as I can't feel much worse than I do.

She has prescribed me Evorel Conti 50 and Utrogestan 100 - does anyone else take this combo or have any views on it?  We've decided to try it for 2 months to see if it helps the crushing anxiety and low moods I get.  It is these patches / tablets that I have been advised to ask for (on this site) so I pray they wont do any harm and will improve my moods.

I wonder if there is anything I should be mindful of physically when starting this combo ie: any side effects and what side effects I might get that means I should stop them immediately.

Your advice as always is really welcome.

thank you
Jo x
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