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My story of ‘treatment resistant depression’, ketamine and HRT
In this episode, Sam shares her moving account of the journey she has been on for the last five years when, after a miscarriage and losing her father, things started to unravel and her mental health suffered.
A difficult few years followed spent navigating depression, trialling several antidepressants and anti-anxiety medications, and seeking help from psychiatrists to try and understand what was going on.
At the time, Sam believed she was years away from becoming menopausal and through her own research sought treatment privately in the form of ketamine due to her desperation to feel better and function again.
Through learning more about hormones and their effects on the brain and mental health, Sam has recently begun to take HRT and feels she has started on a more positive path to health and stability.
Sam’s three tips for those struggling with mental health:
- Try and be assessed by a menopause specialist before accepting a diagnosis, medication or treatment from a psychiatrist – it may save you a lot of unnecessary suffering.
- If you do start taking HRT, be patient. It can take time and the dose and type may need tweaking before you feel the beneficial effects.
- Become as well informed as you can about your hormones and the menopause from good sources online. And talk to other women – you’re not alone.
Dr Louise Newson [00:00:09] Hello. I’m Dr Louise Newson and welcome to my podcast. I’m a GP and menopause specialist and I run the Newson Health Menopause and Wellbeing Centre here in Stratford upon Avon. I’m also the founder of The Menopause Charity and the menopause support app called balance. On the podcast, I will be joined each week by an exciting guest to help provide evidence based information and advice about both the perimenopause and the menopause.
Dr Louise Newson [00:00:46] So today on my podcast, I do have a feeling it’s going to be another emotional podcast for those of you that want to get your tissues ready. But I’m going to be talking today, someone who I’ve only actually just met face to face in the studio is someone called Sam, who reached out to me, like many people do actually in an email. And her story is really interesting, and I learnt a lot from it and it’s made me even step up another gear to try and help other groups of women. So welcome, Sam, today to the podcast.
Sam [00:01:16] Thank you, Louise. It’s a pleasure to be here.
Dr Louise Newson [00:01:19] So do you mind just saying a bit about who you are, where you’ve come from, and just a few words about your journey, if that’s okay?
Sam [00:01:26] Yeah, so my name’s, Sam. I am 47 years old. The accent may give away that I’m originally from Scotland, although I don’t currently live there and I am a mum to a ten year old daughter and a wife and a daughter and a sister. And I am very clearly menopausal. And I think that journey in hindsight, that journey began probably about five and a half years ago.
Dr Louise Newson [00:01:55] So what happened then?
Sam [00:01:57] So in March 2017, just a few weeks after my 42nd birthday, I had a 14-week miscarriage of a much longed for second child, and my dad had died six months earlier, having lived with us on and off for a number of years while he underwent surgery and chemotherapy for bladder cancer. So all together, it was really a very stressful time and I tried to carry on as normal, but I just started to unravel and I contacted my GP who prescribed Citalopram, which I’m sure you know is an antidepressant. And I had taken antidepressants before that in 2004 following a bereavement, and then again in 2013 when I went back to work after maternity leave and very briefly in 2016 when my dad was dying. So I think because I had previously been prescribed them, it was really quick and easy for myself and the GP to believe that this was recurrent depression which would best be treated with antidepressants. And that kind of was the beginning of quite a long, a long journey with a variety of different antidepressants. And I think again, with hindsight, there was something else going on that would have benefited from investigation and treatment. And I believe now that was a hormone deficiency.
Dr Louise Newson [00:03:34] So were you still having periods at that time Sam?
Sam [00:03:36] I was, I think the miscarriage had kind of wreaked a bit of havoc with the periods. And at the end of that year I was referred to the gynaecology department at my local hospital and the referral letter says that it was with heavy periods and symptoms of severe low mood and libido. And so they did a number of investigations and I had some cervical polyps removed and they did a couple of blood tests and they said that repeated blood tests had shown a consistently low level of circulating oestrogen, but that that was within the normal range. And that if I was very keen to try some low dose form of HRT, that could be an option. But at that time, I was 42 and I thought I was a decade away from menopausal symptoms, which to be honest, I’m embarrassed to say now, I really wasn’t aware of what those might be, and I wasn’t aware of the relationship between hormones and mood and other psychological symptoms. And I had some concerns about using HRT, so I didn’t pursue that. I believed it was a mental health issue. And so I kind of put all my efforts into pursuing a solution to that. And so after, you know, after a few months on the antidepressant that my GP had prescribed with no improvement, I then saw a private psychiatrist who prescribed escitalopram, which is another antidepressant and clonazepam, which is a type of sedative. And increasingly I self-soothed with alcohol, which was a toxic mix with the antidepressants and sedatives, and I deeply regret some of my behaviour during that time.
Dr Louise Newson [00:05:32] Which is quite understandable, isn’t it? Yeah.
Sam [00:05:35] Yes. And I think, you know, from what I understand, that it’s not uncommon for people to do that. But at that time, I thought alcohol was the problem and I’d feel better if I stopped drinking, which I did in November 2018. However, within six months, aged 44, I was having suicidal thoughts and that despite having been on anti-depressants for almost two years, which was incredibly distressing, and I had lots of other symptoms which now with the awareness that I have, it seems very obvious now, but it didn’t at the time. So I was waking throughout the night feeling panicked and before dawn on full alert with this sense of dread. I was occasionally soaked in sweats and I can hardly find the words to describe how distressing I found the sleeplessness and its knock on effects. Some days I could barely function. Putting on a load of washing felt like an insurmountable task. I felt terribly anxious and I was crying a lot and avoiding people. I found decision making painfully difficult and my memory was terrible. And sometimes I couldn’t even find words and I feared that I had early onset Alzheimer’s. So I completely lost any self-confidence. And I doubted my ability to ever return to the job that I’d done for almost 20 years, which by that point, I had been signed off work and I really felt worthless and genuinely thought that my husband and my daughter would be better off without me. So I approached my GP practice again and they changed the antidepressants they were prescribing me twice within a few months. And the first time, I experienced quite serious withdrawal symptoms, including it felt like I was having electric shocks in my brain. And I had a panic attack at a local train station. And a GP that I saw at that time suggested that I had treatment resistant depression and he recommended that I explore ECT, which I had some serious reservations about.
Dr Louise Newson [00:07:55] So obviously that horrendous time for you and really deep, dark thoughts that you were getting and all these thoughts and emotions. And you know, Sam, if I hadn’t been running a menopause clinic and if I’d still been a GP and I’d spoken to you ten years ago, I would have definitely said, ‘yes, it’s depression’. I’d had no idea the power of hormones in our brains actually, and more importantly, the symptoms that can occur with low hormone levels. So it’s understandable in some ways this diagnosis has been made. And for you as a young person who didn’t know much about the perimenopause or menopause, you can understand why you yourself didn’t think that it could be related. And obviously to carry on like that would have been unbearable. So I know you went and tried to find other help because, ECT – electroconvulsive therapy – isn’t without risks and it’s very intrusive. So do you mind just saying what you did afterwards to try and get some further help and treatment?
Sam [00:08:56] Yeah, of course. So around that time I read an article about ketamine being used off-licence in the UK to treat treatment resistant depression. So in November 2019, aged 44, I went for a face to face assessment with the consultant psychiatrist who leads the Oxfordshire ECT and ketamine services. And I’ve been having ketamine infusions in hospital every 4 to 8 weeks for the last three years now.
Dr Louise Newson [00:09:31] Wow.
Sam [00:09:31] And you might be aware that ketamine is not currently available to NHS patients to treat treatment resistant depression. So to date I’ve paid almost £8,000 for that treatment.
Dr Louise Newson [00:09:42] Goodness. And when you went to the clinic, did anyone talk to you about other reasons for why you might be feeling like this? Or did they just presume that you did have resistant depression?
Sam [00:09:52] Definitely didn’t talk about other reasons that I might have this. I mean, there was certainly a process. I contacted the clinic and then they required a referral from my GP with background and details of the antidepressants that had already been unsuccessfully tried. But it wasn’t. There was no kind of investigation to see whether there might be another cause.
Dr Louise Newson [00:10:23] Okay. And I mean, obviously, you know more about ketamine now, but how much did you know at the time? Because it’s quite a… I mean, it’s used as an anaesthetic. We obviously – or many people listening will know – that it’s used as a street drug as well. The ‘ket’, as lots of people abuse it, and it can be used for pain control as well. But you know, the anaesthetist, friends of mine, my friends who are consultant anaesthetists actually are really quite astounded that it’s even used for a treatment for depression. But what were you told about it or what did you know about it?
Sam [00:10:54] So I read this article that described it being used off-licence to treat treatment resistant depression and that was really the beginning. And I did a bit of research, so it’s more widely used for this purpose in the US. But here in the UK it has been in use, I believe for 15 years or so. I researched what I believe to be, you know, it’s an NHS hospital that I go to. So I felt like I, you know, there’s research being done.
Dr Louise Newson [00:11:31] Yes.
Sam [00:11:31] So the research into ketamine suggests that it does have positive effects for some people with treatment resistant depression. And, you know, I have to say that I did have some improvements in my symptoms while having it. However, 18 months later, I was still waking up early. I often had very little energy or motivation during the day. I continued to have lots of negative thoughts and self-criticism, low mood, anxiety, lack of enjoyment, non-existent libido, poor memory and concentration. And of course I haven’t worked in the capacity that I previously did since I started the treatment in November 2019, and that’s had a significant financial impact on my family. And you know, I realised while writing this that one might question why I’ve continued having this unusual, expensive treatment when it hasn’t cured my symptoms. And I realise, you know, I’ve been afraid really to lose any benefit that it might have been giving. And to go back to how I felt before I started in November 2019. And I think, you know, also to kind of put it into the broader context, within three months of me starting ketamine, we were all living through a global pandemic and UK lockdowns, and I was homeschooling an eight year old and it was really difficult to know what was what. So, and in addition to that, from really quite early on, the ketamine clinic had advised that they follow NICE guidelines that patients with recurrent depression should remain on treatment for at least two years. And then later, the consultant psychiatrist advised that he sees less relapse in patients who remain on the treatment for three years. So to be honest, I continued having the infusions in the hope that my symptoms would improve, that I wouldn’t relapse, and that I wouldn’t have to consider ECT as another option.
Dr Louise Newson [00:13:43] Yeah, which I can understand because even 5% better is better than how you were before and those of you listening, ketamine is not a widely used medication for depression. It’s increasing. In fact, the number of clinics in America has doubled over the last year when I’ve been researching about it. And there are a few clinics that are increasing in number in the UK. And I actually read there was an article in the British Medical Journal about a year, 18 months ago, talking about ketamine for resistant depression. And it caught my eye because I didn’t know anything about it. So I read that there was some improvement with people. And then I also looked at the cohort of people that they were treating and the commonest group in their study were women in their late forties. And actually, I then got hold of someone who ran a ketamine clinic and I asked him if he screened for menopause or perimenopause in the women in there who he saw. And he said, ‘No, I don’t really know much about the menopause’. And I’ve spoken to him a couple of times now. And last time I spoke to him, he is now actually asking people to download the balance app and make sure that they are not perimenopausal, menopausal, which is great. But as a psychiatrist, he’s had no training in how to prescribe HRT. And when I have spoken to him about it, he said – because I said, ‘Well, it’s very easy, it’s very safe. I can help you, teach you, whatever’. He said, ‘Oh, well I’m a bit scared of prescribing HRT’ and I find that worrying actually, because to prescribe ketamine is not something that every doctor does. Whereas I feel like every doctor should be able to prescribe HRT in the same way that every doctor should be able to prescribe thyroxine or a blood pressure treatment or paracetamol for a headache. It’s, you know, I think there are layers of what you can and can’t prescribe as a generalist compared to a specialist. Ketamine is a very, very specialist medication to prescribe, not without risks, whereas HRT actually body identical HRT is very, very safe and it has very, very low risks, if any, for a lot of women. So it’s interesting that he’s learning, but how many other people running these clinics don’t learn. So then obviously you’re on here talking on a menopause podcast, there must be some link. So what happened then for things to change tack a bit?
Sam [00:15:58] So in early 2020 I turned 45 and I didn’t have a period for five months. So I feel like that was my body giving a much clearer flag that something hormone related might be going on. And although my still uninformed self did wonder whether it might be due to the stress of lockdown, I did speak to my GP, the same GP who’d previously recommended I explore ECT. And he told me he was going to use a car analogy as that’s what he could see out of his window. He said I’d smashed in my bonnet, which was my mental health, and I was asking for an MOT of my hormones. And although I felt suitably chastised, he did agree to do a blood test. And although my levels came back below the reference range, he still didn’t diagnose perimenopause or offer HRT. Instead, he suggested that we repeat the blood tests again in three or four months and five months later he said that my bloods were now normal and my periods had returned. And again, in hindsight, if I known then what I know now, I’d have asked him why he wasn’t following the NICE guidelines, which I heard you talk about, which I believe GPs can diagnose perimenopause without a blood test in a woman over 40 with symptoms, which I clearly was, and that the first line of prescribing should be HRT to alleviate low mood. But I didn’t have that knowledge nor the confidence to challenge my healthcare professional at that time. But I am really grateful that around that time I did meet a woman who just started using HRT and she recommended your podcast, and I began my ongoing education into the menopause. And in February 2021, shortly before my 46th birthday, I contacted the same GP armed with all the information I’d gathered to support my request for HRT. And at that time, he gave me the option of a prescription or a referral to the menopause specialist at my local hospital, who at that time had a waiting list of up to three months. So I opted for the prescription, but I called back the next day to say I’d also like the referral and I’m so pleased that I did because prior to speaking to the consultant obstetrician and gynaecologist who runs the menopause clinic at my local hospital, I’d started to think that I’d gotten it wrong about my hormones and HRT because I didn’t feel that the Evorel 50 patch I’d been prescribed had made much difference. But when I spoke to the consultant in May 21, she advised that I hadn’t been prescribed enough oestrogen for a woman of my age, and she promptly doubled the dose and switched me on to micronised progesterone and away from synthetic progestogens. And she also advised that my testosterone levels were undetectable. So she started adding that in September last year. And when I relayed the car analogy to her, she was very quick to point out that cars need oil to run, just like we need our hormones.
Dr Louise Newson [00:19:13] Yeah, which is absolutely true of course, you know, oestrogen and testosterone are biologically active hormones that are produced from our ovaries the same way that other hormones are produced in our body. And, you know, for many of you listening know that I feel really sad and upset that it’s such a battle for women to get their own hormones back when we know that there are so many benefits to their body and also for their mental health. And also, there’s no way of knowing – obviously you know as well Sam – that your low hormones were a cause of your mental health issues. And I always speak to women very openly and say, I have no idea. But actually women in their forties are very likely to have low, or very low in your case, levels of hormones in their body and optimising their hormones will have benefits to their health, and it may have benefits to their symptoms. But how many mental health issues are related to hormones in that person I see is impossible to know. Same as I don’t know whether their joint pain or their hair loss or their skin changes or their palpitations are due to their low hormones. And even testing showing a low hormone doesn’t mean that’s causing the symptoms. So the only way of doing it is by proof is in the pudding really. And it sounds like the doctor that you saw was really good at optimising your hormones and giving you the safest type and dose of HRT, which was right for you, which is fantastic. So what happened? Did they help?
Sam [00:20:43] So I’ve heard on your podcast about women who’ve experienced improvements overnight or within days, and I really hoped that HRT would be that miracle for me. And that hasn’t been my experience. But I have gradually felt better and when I look back, I can really see how far I’ve come. I’m much steadier. I no longer burst into tears. My energy, motivation and capacity for joy is returning. I feel more sociable and I enjoy rather than fear and avoid interacting with others in social events. My sleep is much better, although I still wake up early and I can never get back to sleep. And I’ve repeatedly been told that this early morning wakening is a textbook biological sign of depression. However, I believe it can also be caused by hormones. So during the last 12 months, I’ve gradually reduced and stopped taking antidepressants and anti-anxiety medications. And I’ve increased the interval between the ketamine infusions.
Dr Louise Newson [00:21:51] Great.
Sam [00:21:52] I’ve been told that there’s a lot of evidence that stopping antidepressants is associated with relapse. However, what I find is rarely discussed are the antidepressant withdrawal symptoms, which often mirror the signs of depression that they were prescribed to treat in the first place, leaving people feeling trapped on them out of fear of relapsing. And I certainly feel that that was the case for me. It’s taken much longer than I’d hoped it would, and I did experience some withdrawal symptoms. However, I persisted and they went away and I’m due to have one more ketamine infusion and all being well I will also stop having ketamine. And so the only thing that I will be left taking, left using is HRT.
Dr Louise Newson [00:22:39] Amazing.
Sam [00:22:39] And I have found that to be more effective at treating my mental illness symptoms than any of the psychiatric medications that I’ve been prescribed, with none of the side effects and lots of long-term health benefits. And in a couple of weeks, I’m due to return to my career after almost three years away from it.
Dr Louise Newson [00:22:59] Gosh, it is amazing. And I’m so grateful, Sam, that you’ve shared your story because I know it’s not easy and it’s not easy reflecting on what you’ve been through. And I, I really hope, as I’m sure the listeners do, that you can put the past behind you. And this is the start of a new beginning, because it sounds like it really is. And a lot of people, when I talk about transformational effects about HRT, are telling me that it’s just placebo and that it’s because it’s my private clinic that people are coming to. But actually, you’re not a patient of mine. And actually, you know, when you’re in the depths, you’re not really expecting so much to improve. And we’re doing a lot of data collecting, looking at women’s symptoms who improve with testosterone, and we’ll share our results soon because they’re very revealing. But actually, I know from clinical experience that a lot of very deep dark thoughts, a lot of mental health issues really improve with testosterone, but it can take months. And I’ve got some patients, it’s taken a couple of years or so. And some of you might have listened to Vanessa’s podcast that I shared a few weeks ago. It took her quite a long time, actually, and it does take time because the body’s having to adjust and change and a lot of psychiatric drugs can actually make our hormone levels even lower. So almost give a chemical menopause as well. And we’re working very closely with different psychiatrists and hopefully we’re going to have one working in the clinic soon to help advise women to come off some of this medication, because there are long term risks of being on any medication other actually, than HRT, which is just a hormone. And people in the past are worried about this breast cancer risk. But with a natural HRT, there isn’t any definite data to say there’s a risk of breast cancer increasing. So there are benefits, as you know, to your heart and your bones as well. So I just really hope moving forward Sam, we can change things so that women if they do need, not just ketamine but other heavy duty psychiatric drugs, that the team or members of the team that are helping and treating them will certainly consider the perimenopause and menopause. And I know you agree with me on that, don’t you?
Sam [00:25:07] Yeah, absolutely. I mean, that’s why I reached out to you in the first place. I felt that had, you know, at that first assessment for ketamine treatment, had somebody assessed my hormones who had been trained and had an awareness of menopause symptoms and treatments, had they perhaps tried me with HRT for a few months prior to trying me on what is an unusual psychiatric treatment that actually I might have avoided doing that altogether. And it really, I find it really hard to believe actually that GPs and psychiatrists are not – in fact doctors at all – are not being… that this is not part of the training that doctors receive, I really feel like it should be mandatory training for all medical professionals.
Dr Louise Newson [00:26:00] I do agree with you there and I know I remember listening and reading about Professor John Studd, who I had the privilege of knowing who sadly died now but he set up one of the first menopause clinics in the seventies or eighties, it was actually closed down. So the local health authority, some of the doctors complained about it and it was actually closed down initially because they thought he was maverick and mad prescribing hormones to women. And he persisted and had a lot of bullying. And at the time I thought that was quite outrageous. But then I’m subject to quite a lot as well and people are really quite cynical about my clinic, whereas I think how can people be rude about my clinic when I’m working out of NICE guidance, when actually ketamine clinics are popping up left, right and centre and charging ridiculous amounts of money. And I’m sure there’s a role and I’m not here to be rude about ketamine clinics, but I just feel like you Sam, that women, certainly should be assessed by a menopause specialist or someone with an interest in female hormones before being subjected to that treatment. So before we end, is it possible for you to just give – I know it’s really hard because it’s early days – but three tips for women who are really struggling with their mental health and may have even thought about going to a ketamine clinic. Have you got three things that you’ve really learnt from that you maybe can share and help?
Sam [00:27:23] Absolutely. I think my first tip would be to try and get assessed by a hormone specialist before accepting a psychiatric diagnosis, medication or treatment. I appreciate this can be challenging given some areas don’t have menopause specialists and those that do may have a long waiting list. Then, of course, not everybody has the resources to see someone privately. However, if you can do this, it could save you a lot of unnecessary suffering. My second tip would be that if you do trial HRT, try to be patient. It can take time and tweaking of the type and dose before it has an effect. However, like I said earlier, HRT has been more effective at treating my mental illness symptoms than any psychiatric medication I’ve been prescribed, with none of the side effects and lots of long-term health benefits. And finally, I would suggest that you become as well-informed as you can. Listen to podcasts. Follow menopause specialists on Instagram. Read up to date evidence-based books and websites. Download the balance app and talk to other women. You’re not crazy, lazy or broken, and you’re not alone.
Dr Louise Newson [00:28:47] Yeah, and I’m really grateful. And I think this is all isn’t it? It’s sharing. You know, I’m sharing a lot of experience from my clinic, from the research that I’ve read, the papers that I’ve read, my clinical experience, but also my experience as a menopausal women as well, and how we just need to talk and start a conversation. And this has been a fabulous conversation, and I’m very, very grateful for your time Sam and I know it will be really interesting, revealing and also quite harrowing, actually for a lot of people to listen to. But I know it’s going to help this conversation move forward. So thank you again.
Sam [00:29:21] Thank you so much, Louise.
Dr Louise Newson [00:29:25] For more information about the perimenopause and menopause, please visit my website balance-menopause.com. Or you can download the free balance app which is available to download from the App Store or from Google Play.