The Dr Louise Newson Podcast - 187 - My experience of long COVID and changing hormones with Dr Marianne Tinkler

Episode Date: January 17, 2023

Dr Marianne Tinkler is a respiratory consultant from Swindon. In March 2020, Marianne contracted Covid-19 and had to take a month off work with a severe cough and extreme fatigue. She returned to frontline work on the wards at the height of the pandemic but found it difficult due to ongoing symptoms of tiredness, breathlessness, a racing heart rate and significant brain fog. Later that year, when long COVID became more recognised and Marianne was continuing to experience severe symptoms, she was encouraged to take an extended break from work, and this gave her time to reflect on her hormonal journey as well as learning how to navigate life with long COVID. In this episode, the experts discuss the relationship between long COVID and the perimenopause/ menopause, the barriers to accessing treatment and some of the benefits of diet, movement and HRT for those suffering with long COVID. Marianne’s advice if you have long COVID: Pace yourself carefully and don't ‘push through’. Track your symptoms on the balance app and consider HRT if you think some of your symptoms may be due to perimenopause or menopause – even if you think you’re ‘too young’. Look at your diet and activity levels and eat foods that are good for your gut microbiome. Try and get outside every day, even if your energy levels will only allow you to sit on a bench.

Hello, I'm Dr Louise Newsome and welcome to my podcast. I'm a GP and menopause specialist and I run the Newsome Health Menopause and Wellbeing Centre here in Stratford-Bron-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. So today on the podcast, I've got with me, Dr. Marianne Tinkler, who I have been hearing about actually for a little while. And up until today, never seen her face to face, as it were. So Marianne is a respiratory

consultant who also has long COVID and reached out actually because she was very keen to talk about her experience and hopefully allow others to learn from it. maybe resonate with some of what she's going to say. So thanks, Marian, for joining me today. Thanks for having me, Louise. It's nice to see you in person and, yeah, meet you face-to-face. Oh, so respiratory, I was, many people know, I was wanting to do oncology when I was a lot younger. And so I did my hospital jobs and one of them was working for a respiratory consultant in Manchester. And I really enjoyed it, actually. And, you know, our lungs are obviously incredibly important, but there are so many conditions that can really affect our lung function that we often

don't think about and sometimes just think about lungs in isolation, don't we, rather than how other body processes can be affected with our breathing. So what made you decide to go into respiratory medicine? Respiratory was my first job that I did as a doctor in training. I trained in Wales and I was lucky that I had great consultants that I worked with and I really enjoyed my job. And I think there's just a wealth of diseases, as we talked about, from asthma, from lung cancer. And it is the whole spectrum of young people to old people, diseases that we can cure and you can get better from to the diseases that we can't cure and the end of life. And that's really what I enjoy about it.

So that's why I went into respiratory medicine. I think medicine is much more than just prescribing a drug. You know, it's all about their lifestyle. it's all about their diet, their exercise, you know, what conditions do they live in? Are they in mouldy houses, in damp houses? And that's so important in respiratory medicine. The air that we breathe in, is it polluted, is it damp, is it mouldy? And that's why I really enjoy respiratory medicine.

It is not just the drugs that we prescribe. It's our lifestyles. Oh, it's totally. And actually can be very rewarding. I remember as a junior doctor in Manchester, there was a patient. he had a lung cancer that had been diagnosed and he kept coughing up blood and I then saw him one night when I was on call at three in the morning I'd gone to another bed to see another patient and he was there across the ward and I went up to him and he was so scared actually because coughing up blood is

horrendous actually and very scary for relatives as well and no one had actually talked to him about ways that he could help his breathing and the pain that he was in and everyone was just focused on the blood and what happens if he coughed off a lot of blood and that's a very catastrophic way to die understandably. But no one had really sat down and given him time just to talk. And because I'd recognised him and his family had recognised me, I went over and I remember at three in the morning having this long conversation actually about how there are lots of things that can be done and knowing that there were ways for the family to look out to, you know, when they need to ask for help as well. And actually then I thought really communication is key because everyone on the ward

when I spoke to the team that were looking after him the next day, they said, oh, we're just worried about his bleeding and the coughing up blood. And I said, but he's not worried about that. He's worried about the way he's going to die and if he can't breathe properly. And I just thought, goodness, sometimes we can be scared asking questions, but they're the questions that people want to have answers for, aren't they? And I imagine that was the thing that he was worrying about the most and he was just waiting or hoping that somebody would have raised that and it was that elephant in the room that he didn't want to raise with anyone because he would thought that it was too big or too scary to talk about and if the doctors weren't talking about it or the

nurses weren't talking about it must have been too big a thing so yeah I also said at the beginning that you're not just a spiritually consultant you're a spiritually consultant with long COVID and no one wants to be labelled by a disease or thought has something with a disease but you're very bravely want to talk about your experience. So to have long COVID, by definition, you will have had COVID infection. So do you mind talking a little bit about it? Yeah, I do feel a bit vulnerable telling my story, but I feel now that I got to a point of my recovery where I feel brave enough. And I think it's that vulnerability is not of being brave. But yeah, I got COVID right at the start, being a respiratory consultant before COVID was technically recognised being

in the country, but it was right at the start of March 2020. Of course, obviously being a respiratory consultant whilst working on the ward. So, you know, typical cough, fever, tiredness, loss of smell in March. I got it pretty badly. Well, I did get it very badly. So I was off work for a month. And at the time, you know, I got very bad cough, chest pain. And looking back, when I had a CT scan six weeks later, my severe chest pain with the acute infection was explained with bilateral broken ribs at the time, which explained why I was very sore coughing at the time. And, you know, at the time we thought it was just a viral infection, didn't it? It would get better. We would recover. And so I just thought it was that. So I went back to work on the front line

when COVID was hitting. And, you know, I wasn't too bad, but I was noticing that I was getting very breathless, just walking the kids on to school. My heart rate would go up to 140, which, you know, I was mid to late 30s. And this wasn't normal to me. I was fit and active. I had three young boys. And it was sort of in the summer of 2020 when it was starting to come around in the social media that actually this was a post-viral syndrome, the long COVID was starting to get mentioned. And this syndrome of pots, and actually, I've never heard of pots, you know, through medical school, this persistent orthostatic tachycardia syndrome was getting mentioned in the sort of Facebook forums. And so I diagnosed myself, I guess, with pots doing the NASA lean test.

That's when you sit down, you measure your heart rate and then you stand up leaning against a wall and you measure your heart rate over a 15 minute period. And my heart rate went from 60 sitting down, which was normal for me, to 120. And the criteria for pots is a raise of 30. And that sort of explained why I was feeling pretty rubbish. So I had long COVID has got about 200 symptoms. And I had the typical features of long COVID. I was tired all the time. And long COVID, it's not just fatigue, you know, it's not just tiredness. It is an overwhelming fatigue. I had muscle aches. I felt like I'd been in the gym sort of doing weight all the time. I would wake up feeling like I was hung over all the time. So I was managing through the summer and was sort of feeling

okay, going to work and not doing too bad. And then I think it started getting worse when I had a period of a severe headache. And my immunologist feels that that was a reactivation of possible herpes simplex, so the cold sore virus. And for me, that's when my long COVID really kicked off. And at that point, the typical symptoms of long COVID for me got worse. I would wake up feeling like I had the worst hangover ever, feeling constantly jet lagged. It wasn't just like a normal sort of tiredness. You know, I couldn't really think. I had brain fog. So, you know, a better term is cognitive dysfunction. You know, I struggled to do simple things. tasks. I couldn't add up, you know, four times six. Very scary. Yeah, really scary. You know,

I'd put things in the oven to cook cakes and completely forget about them, come back and they were burning. You know, I'm a constantly juggling mum of three boys. I can multitask. And I would just forget to do things. Too much physical or cognitive exertion would flare my symptoms, which is a real key feature of long COVID or post-exertional malaise. And that's a real sign that your body needs to rest. But I'm a typical busy working mum. I ignored that. And my response was just to push through.

So I was still working at this point and being a mum of three boys. And I would be at work. And then on my days not working when my kids were at school or at nursery, I would just be sleeping all day. And so I was in this typical boom and bust cycle. And at this point, I spoke with sort of occupational health. And this was the point where occupational health said, you are really not coping.

And they said you need time off work, which I was really, really thankful, actually. You know, I think doctors are some of the worst people to look after our own health. And you'll probably agree with this, won't you? Yes, totally. So I think I needed someone to look after my health. And so I was told, you need to stop work. And for me, that was a really dark time, actually, because actually being given the permission to stop

was then a point where I totally sank down. And I fell apart in a heap, to be honest. And, you know, I think I was completely holding it together and then it fell apart. And so I was off work, pretty much not able to do anything for about three months. Gosh. And were you having your period? Sorry to ask a weird question when you're talking about long COVID.

No. So I've got three boys. I had IVF for the first two. And then number three was a very, very welcome surprise. And I had a myrina coil with baby number three. So that means, for those listening, the marina coil has got a synthetic progestogen in it. it keeps the lining of the womb thin, great contraceptive, but it often results in there being

no periods. And so that's very hard then, isn't it, to monitor your menstrual cycle or your hormones. If you're not having periods, we know hormone blood tests are a waste of time. So then what did you do? What made you think about your hormones? So it was basically about three months later, I started noticing that every month I would have a real flare of my symptoms. around every four week. So it was a 28-day cycle, I could pick it off the diary, that I would have a three or four-day period where my symptoms would get way worse. And it would pretty much take me to my bed. You know, my symptoms would flare off massively. And to me, it felt like a complete dip of my estrogen. And then I would feel a bit better. And then a month later, it would dip again. So I booked an

appointment and had a chat with a really lovely GP who didn't dismiss me. And I just said, it just seems to me that this feels really like a dip of estrogen. I said, could I try some, I said, I'm only 38. I've got no family history of early menopause, but please can I try some estrogen? And, you know, we discussed the pros and cons. And she said, I'm happy. She said, there's no point doing a blood test because actually it won't really help us, but based on your symptoms, You know, talking through symptoms, you know, I had on top of things, I had some tingling and my hands and feet, my sleep. I mean, COVID's recognised to long COVID disturb your sleep. But I was really struggling to fall to sleep.

I would wake every sleep cycle. I'd have really vivid dreams. And I was just not waking refreshed from it. And obviously, if you can't sleep properly, you're not going to heal your body properly, are you? It's not going to help your body. Absolutely. And so she said, well, why don't we try you on some topical estrogen? Obviously, I had the myrina to help from the progesterine side of things.

And she said, give it a month with one pump of estrogen. And if that doesn't help, or if it does help a little bit, you can increase it up to two. And it did help a bit. So I increased it up to two and it helped a little bit more. Interesting. Which I thought was really interesting. And then since then, you don't want me saying that you've been using some testosterone as well, haven't you? I have. So, you know, I think the other things that I felt, you know, you spend a lot of time reflecting on your symptoms.

I just couldn't exert myself without having this flare of post-exertional malaise. I was getting very breathless. My quality of life was rubbish. You know, I couldn't go out with my kids without, you know, having a full. flare of my symptoms and having to go to bed essentially. You'd have to plan where you could go because you'd have to make sure you could rest in a park. You couldn't go out for a whole day trip with them because it would, you know, didn't have enough energy to go and do that. We'd have to plan our holidays where we could go because holidays would be too much energy. You know,

my quality of life was awful. For me, I had very low motivation, very low mood. I'd put on a lot lot of weight which I was trying to lose, but my normal ways of losing it just weren't working. So that's why I reached out to your clinic to try and see it felt for me that I felt low testosterone levels and I felt quite personally that I wanted to try some testosterone. And the background, I'd also been seeing a cardiologist because I'd been diagnosed with this dysentotanoma and pots. And I'd also been doing lots around. changing my diet, doing lots of vitamins from the long COVID side of things and lots of other treatments that we can come on to from that side of things. So yeah, so I started on some testosterone

and I think that's really helped me. The blood tests have also shown that I've had low testosterone and the testosterone replacement I feel has helped me over the last six months. I think it's very interesting, is it? So if I'd had this conversation with you 10 years ago, I didn't even know women produce testosterone because I don't know about you, Marianne, but no one taught me that at medical school at all. Nobody mentions it, do they? No, and I remember going to a lecture actually with a menopause specialist to say, women produce more testosterone than estrogen when they're younger. And I was like, what? Testosterone, women, what's happening there? And then I obviously read about it. Most of the evidence is just looking at libido because that's all they've done because obviously women don't get me

wrong libido is very important, but actually we are more than just sexual beings. And we have a lot of testosterone receptors in our brains in areas where we look at cognition and memory and mood. And then we also have a lot of testosterone receptors in our cardiovascular system and our lungs and our bowels and our skin and our joints and everywhere. So then you think, well, you know, we have been designed as human beings for our bodies to work very well, but we don't have a testosterone receptor just for fun. It must be there for a physiological reason. And so then you sort of look and put the pieces together. And then because nice guidance say we can prescribe testosterone for women who have reduced sexual desire, most women I see in the clinic have zero or very little libido despite being on HRT.

So then I've been prescribing testosterone for reduced sexual desire, finding that women say, well, their mood, their energy, their concentration, their stamina, their ability to sleep, their ability to function and multitask has all returned. And yes, a lot of women find that they improve their lifestyle and their eating habits and their exercise, which of course is going to have an effect. But the biggest difference they've made in the sort of three to six months since I last saw them in the clinic is starting testosterone. And I think it's very interesting when you think of pots as well, the effect of testosterone on our hearts. I see a lot of women who find very dizzy when they stand up.

You might not be diagnosed with pots, but testosterone can often have this effect as well. And it is just a hormone and we give very low doses as well. So it's very safe to try compared to some other things and I'm sure with your job, you've prescribed all sorts of drugs that have had side effects. Well, I think that's it. I mean, and I think also, you know, for me, I had a very low sex drive through it all. So that was, you know, I definitely had criteria as well. but actually what was more affecting my quality of life, as you said, was my cognitive dysfunction,

my low motivation, my low, you know, just everything, my low quality of life, you know, I'm now able to work, I'm now able to function more as a mum, I'm now able to string words together a bit better. And as you said, the HRT and the testosterone have much lower risks and a lot of other treatments that the long COVID patients are going out and seeking privately, you know, people are going out trying aphoresis, which is a blood filtering system, which is costing, you know, 15, 20, 25,000 pounds. They're going out and doing, you know, they're trying anything to try and get back their quality of life. And I think you have to recognise that, yes, ideally as doctors, we are hoping to get evidence-based treatments, but long COVID is a new disease, which, you know, I think the O&S data is that there are

380,000 patients with long COVID symptoms of two years, of which I'm one of them. And the UK is getting some trials out, and I think they've got 50 million worth of funding in the UK now of studies. But I think the quality of studies that the NIH are funding in the UK at the moment, are a bit variable. They're either observational ones or they're quite postcode lottery like the Stimulate ICP

which are only recruiting for London or they're looking at weight loss meal replacement ones which you have to question about if your quality of life for non-COVID is quite poor, how much better are you going to feel if you're going to give a meal replacement? You know, I'm not sure. just losing weight is going to make you feel better.

And I think we have to question, there's quite a lot of gas lighting still going on. Oh, totally. But I think there's, you know, gas lighting is something I'd not even thought about until recently, but there's a lot with menopause, and I think there's a lot with long COVID. I'm a member of a lot of long COVID support groups and listening to the stories.

And in fact, quite early on with long COVID, I kept saying to my husband, I'm sure hormones are part of this. And he said, look, stop blaming hormones. everything. And I said, no, but listen, we know that coronavirus attacks the 82 receptors. We know there are a lot of ACE2 receptors in our ovaries, but we also know that any infection can affect the way our ovaries work, because as our bodies are very well designed to protect us from being pregnant at times of infection or times of illness, so our ovaries that won't work as well when we've got an infection, they won't work as well with the way the coronavirus affects the ACE2 receptors.

and also a lot of women are just going to become perimenopausal or menopausal as well as having COVID. So I'm not saying that long COVID's cure is hormones, but I am saying that I think a lot of women are going to have a worse deal of their long COVID because their hormone levels are low. And so in the times when long COVID started to be talked about, I actually reached out to 40 different research teams and spoke about hormones and they all just said, no, we're not interested. No, we're not doing any studies.

Nothing, nothing, nothing. And then there was a study, I won't say where, but somewhere in London. And they were looking at antihistamines. They were looking at chalchicine. Or they were looking at aspirin. Or actually, it wasn't aspirin. It was a noac, a novel oral anticoagulant. And I said, well, could you just have a fourth arm looking at hormones?

And they said, no, we can't. And I said, right, well, why don't you just do some hormone testing? Because Easter's aisle is not very reliable, but it's very interesting. sometimes to do testosterone levels because testosterone deficiency can occur even if Easter dial levels are normal and they said no we're not doing that so I found it all very frustrating and then you just look at the commonest group of people with long COVID are women in their late 40s so then I've said to quite a few people who run non-COVID clinics why don't you screen women for the menopoles and perimenopoles give them the balance app allow them to have their

hormones rebalance because there'll be perimenopoles or menopausal, and then see what's left because you might find that your clinic isn't quite as busy as it could be otherwise. But no one's had menopause training. A lot of hospital doctors don't prescribe HRT. So I feel like we haven't moved the needle forwards and I'm not quite sure how to do it because this is a global health problem long COVID, isn't it? Exactly. And that's what I'm seeing in my clinic as well, in my respiratory clinic. I'm seeing some long COVID patients. And, you know, I haven't yet done the HRT training and, you know, in respiratory, don't get menopause training, but obviously I'm developing now an interest in the menopause. And so I try and direct the long

COVID patients that I see, you know, I get them to download the balance app, you know, but I've directed a few patients to their GP. And then I see them back again in four months time. And I said, you know, have you had any luck discussing perhaps getting HRT with your GP? And some of them have had difficulty despite being in the prime menopausal range of sort of 50s. And they said, oh, no, they said they don't think I'm menopausal. And to me, they've got long COVID. I think they've got some menopausal symptoms. You know, they've got clear hot flushes, you know, some joint pains, some, you know, but they're having difficulty discussing perhaps getting HRT from their GPs. And I think it's this difficulty, isn't it, of, there's a lot of barriers, isn't there, for

patients to access menopausal care. And I know our GPs are, there's a big crisis, isn't there at the moment. And everybody is trying to do their best to do the best care that they can at the moment. But I don't quite know what the best answer is. You know, last year I was a NHS England patient advocate for long COVID. So, you know, we did try and bring it up. And I think a lot of the long COVID clinics now are screening patients for any menopausal symptoms. So I think the landscape is changing, and I discussed it at my long COVID clinic recently. So I think the awareness is there, and I'm on long COVID groups, and do bring up the overlap between perimenopausal symptoms and long COVID symptoms. I don't think it is just perimenopausal symptoms cause long COVID, and long COVID symptoms are

perimenopausal, you know, it is little increments and actually the HRT hasn't solved all of my problems, you know, I have a lot of cardiac problems, but it's those tiny little wins that if you can cause, give a little increment of benefit with some HRT and a little increment of benefit with some cardiac medication and a little incremental benefit with the MCAS treatment with the Fomotidine and Fecisphenid for the long COVID. And I've had some hyperbaric oxygen treatment. And that helps. And I've changed my diet. And that helps a little bit. And you get these little incremental gains. Then I think you gradually try and improve your quality of life to try and get a bit better. I think it's so important. And I think nothing.

in many walks of medicine actually is 100%. And I think as a patient, we have responsibility to work out what's best for us. So even if I had long COVID, you had long COVID, what treatment would work for both of us would probably be different, but it's a combination of treatments as well. And it might be that HRT makes one person 2% better, someone else 20% better, someone else 80% better. That's fine actually.

But we need to be able to allow people to have a choice and what I am hearing from a lot of low COVID people is that they're, like you say, they're being denied even a trial of HRT, but also they're only prescribing estrogen. They're not prescribing testosterone because there's a lot of reservation about prescribing testosterone despite it being on nice guidance. I've been really lucky now that, you know, obviously the testosterone has been instigated in the private clinic and now my GP has taken over the prescribing of it through the NHS. Yes, which is very good.

And the thing I feel really strongly about, which is why I've, overcome my vulnerability and why I'm doing the podcast with you now is I feel really strongly that actually we need to try and break down the barriers of access to patients because I feel really strongly than actually it shouldn't be the people who can afford to go and pay privately to get the access to this treatment. You know, what about, and it's clear it comes out in the data, you know, some of the research data say that long COVID predominantly affects women who are in their 40s to 60s. Well, actually, no, it doesn't. It's just that the data is capturing that. It affects the ethnic minorities just as much, but they're not coming through the long COVID

clinics as much because they're not accessing healthcare as much. And I suspect that actually that comes out in the menopause data as well. These patients aren't able to access the private menopause care as much and probably aren't able to access the NHS menopause care as much as well. So, you know, these patients probably aren't able to access the testosterone or HRT as much. And so probably aren't able to get that one or two or 10% benefit for their long COVID as much. And so we should be reaching out into those communities, into those less access patient groups to try and get them in. And it was even in the Bank of England economic reports that actually there's a big, cohort of previously working people who now aren't working and they think that there's a signal

that because of long COVID, those people now aren't working or have gone to working part-time because of long COVID. And actually, you know, if there are some treatments and maybe if HRT is going to help people either get back to work or increase their hours because of that, actually that's going to have a big economic benefit. You know, it's going to have a massive personal benefit. You know, I'm lucky I've got some income protection. But actually, there are lots of people and lots of people in the long COVID forums who are now losing their jobs because of their long COVID, you know,

who are having to have their grannies pay their mortgage. You know, it's a massive personal and economic impact of this. And actually, if a drug like HR, or if some intervention is going to have an impact for these patients. You know, and these patients are willing to make some informed choices and are happy to take those individual risks whilst they're waiting for these research trials to come through and the research trials actually need to be done to decide whether these treatments are going to make a difference with the testosterone and the HRT,

which they're not, doesn't sound like they are happening at the moment. Yeah, I think we need to look to see whether they are going to benefit, aren't they? Absolutely. I think you're totally right. And we're doing a lot of work actually behind the scenes with a clinic that we'll announce, hopefully soon, about how to make HLT prescribed, especially testosterone, cheaper, more affordable, because a lot of it is about choice. And if women want something when they've got knowledge,

then I feel very strongly they shouldn't be denied it if it's coming from the right place and for the right reasons. and I really hope that we can start doing some proper research, especially into the merits of testosterone beyond libido. So I'm really grateful for your time, Marian, and I think I'm going to have to get you to come back so we can talk even more about other treatments also with long COVID as well, because I know we've talked a lot about hormones,

but there's lots of other things, and I'm hoping maybe I could invite you to come back next year so we can talk again, because it's a really important topic that is not going away very quickly. and not quick enough because I think research priorities aren't quite aligned to what the women want. So before we end, though, three take-home tips, if that's okay. So for people who've got long COVID and maybe struggling or not receiving the treatment or advice that they're perhaps expecting, what would you recommend?

Make sure that you pace and don't push through. Yeah. Track your symptoms on the balance app and consider HRT if you think that you think that you could have an element of menopause or perimenopause, even if you may be younger than you think. And think about the holistic lifestyle changes, such as looking at your diet, exercise. Think about having a balanced diet, a rainbow diet with a range of multicolored diet, which a probiotic sort of lots of kimchi, kombucha and kofia, I've had smoothies and sort of flaxseed to help improve your gut microbeoim.

I think that's really important with recovery from long COVID. And also exercise, getting outside if you can, even if it's just sitting outside on a bench if your long COVID fatigue doesn't allow you. I think that's really important for your wellbeing. Absolutely, really good advice. And we've got a special booklet actually about long COVID as well. and there's lots of information with Emerilis Flint about that microbe as well, because all of this is really important to consider and look at,

and the most important thing is just do not suffer in silence. So thank you so much again for your time, Marian. It's been great, so thank you. Thanks for inviting me, Lou, it's great that you're helping and just raise the awareness about the link with long COVID and hormones. Thank you. For more information about the perimenopause and menopause, please visit my website, balance-manopause.com, or you can download the free balance app,

which is available to download from the App Store or from Google Play.