The Dr Louise Newson Podcast - 122 - Myth-busting clots with Maggie Honey

Episode Date: October 19, 2021

Maggie Honey was diagnosed with antiphospholipid syndrome, which can be described as having ‘sticky’ blood that is prone to clotting. When she was 46 and a busy mum of triplets, Maggie began having insomnia, recurrent UTIs and dry eyes, skin and mouth. It wasn’t until her periods had stopped for a year and she felt dreadful all the time that she realised many of her symptoms might be related to menopause. When she sought help, she was given more diagnoses related to her blood condition but no help for her symptoms. Her blood disorder consultant at the time told her, ‘whatever you do, don’t go on HRT’. This was due to the inaccurate belief that all HRT holds a risk of clot. In this episode, Dr Louise Newson talks through all the issues that Maggie’s story illustrates, including explaining why HRT is usually safe for people at risk of clot, when estrogen is given through the skin via a patch, gel or spray. They discuss how beneficial HRT can be for your quality of life, and what lifestyle factors do actually raise your risk of getting a clot. Maggie’s 3 menopause tips for people at risk of clot: Listen to your own body, keep a symptom diary like the one on balance app. Trust your own instincts and don’t be fobbed off. Find a menopause specialist as well as a sympathetic blood specialist doctor (haematologist). Encourage communication between your different doctors, including your GP. Share information with friends, family and colleagues. The more we talk about it, the more help we can give to one another. Read more about Maggie’s story here and for more information, read our booklet on Menopause and Clots. Thrombosis UK is the charity mentioned in this episode for people at risk of, or living with, thrombosis (clots) and the website is www.thrombosisuk.org

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 well-being 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 this week's podcast, I'm very excited to introduce to you, Maggie, Honey, who I've known for a little while, and she's very kindly agreed to tell her story.

And I think it's actually really interesting to hear stories because as doctors and clinicians, we're always reading the evidence, we're always looking at data. But actually, we do all this for our patients. and when we hear real stories, it puts things into focus and sharpens our pencils. So Maggie, thank you so much for coming today to record the podcast with me. Well, thank you for inviting me, Louise. I'm very excited to have the opportunity. I'm excited to have the opportunity to get it out there that it's all right for women

who've had plots to take HRT. Yeah, so that's in a nutshell. We don't need to do any more on the podcast, really, They're saying women who've had clots can take HRT. So just to set the scene, Maggie, so before I met you, obviously you've been struggling, but you've got a history or you've got a condition that increases your risk of clots. So do you mind just talking through your story about the clots and then a bit about what happened with your menopause, if that's okay?

Yes, not at all. So in 2007, I was diagnosed with a condition called antifosophilipid syndrome, which is a bit of a mouthful. I couldn't even say it, let alone spell it. So when I was told I got it, I thought, well, what does that actually mean? And basically it's sticky blood, sometimes known as Hughes Syndrome, named after Professor Graham Hughes, who kind of discovered it back in 1983. And basically, it just means your blood is prone to clotting. They now know there are three simple tests to diagnose it, and you have to have those

several times repeated to confirm that you have the condition. And it's related to lupus. So occasionally you get flare-ups as people do with lupus. So there's a lot to contend with. It's an autoimmune condition. It's very unpredictable. And as I was to learn, when I went into the perimenopause, which I didn't even know I was in, basically.

So at the age of 46, things started to go a bit haywine. I think it was the insomnia that was probably the worst at first. And I'd got triplet boys who were quite all-consuming and not being able to sleep made it incredibly difficult to manage with them. But I also developed UTIs, dryness everywhere. And of course, I didn't really realise that it was the perimenopause. So I thought I was kind of going a bit potty. I was on antibiotics virtually permanently for UTIs.

And I was also quite miserable because I liked to know what's happening to my own body. And I just knew I wasn't right. Went to the GP. Antidepressants were discussed because I actually cried in the GP surgery. You know, please can you help me? And antidepressants were offered. Never any mention of the menopause or perimenopause. And then I had my last period in 2016.

And really, everything just got worse. And along came the hot flushes and more UTIs and more dryness. So they actually tested me for something called Shergren's syndrome, which can come in the Lupus group. And they said, we've got this. So they kind of threw that into the fray as well. Yeah. And Shergan's disease, for those who this syndrome, is a condition.

like you say it's an autoimmune and interestingly affects women or the men. Women get very dry eyes, very, very dry eyes and a dry mouth as well, which actually are very common symptoms of the perimenopause. And menopause because estrogen helps the lubrication of the cells in the eyes and the mouth. So we see a lot of women who have been misdiagnosed with shurgrens, actually. So yeah, sorry to interrupt. No, that's what. So yeah, shagrins was mentioned and then sicker syndrome. And I thought, golly, I'm just adding all these things to the list. And that just makes you feel ever so slightly out of control because they're telling you you've got these things but not offering anything to actually help with them. And I thought, oh, this is just awful. And in 2017, I saw my consultant for antifoslipid syndrome and I said,

please can you help me? Something really isn't right. I kind of worked out by then. It was the menopause because I hadn't had a period for a year then. And he said, no, whatever you do, you will not be able to go down the HRT route. There is no way, so don't even think about it. That was because of your Houston. That's because of phospholipidia. Yes. And I have to say, Louise, at that point, I'd never had a clot, never had a clot. So. You just got this increased risk of a clot, but never had a clot. I'd never had a lot. Yeah. And that was a lot. And that was a So 2017, I was virtually begging for something, some help. And in 2018, strangely, I did develop a clot in the subclavian vein.

But it was a provoked clot after doing a body combat class, after doing a lot of punching with the right arm. A hand in the arm over the next 48 hours went blue, and I was diagnosed with a clot. So even more then the consultant was saying, oh, definitely no HRT for you, da-da-da. So I then went on to different blood thinners. And I changed consultant. I've got a different hematologist now who is very interested in helping women with the menopause.

And what a difference that made. And then I met you. And that was just the icing on the cake. and to have two professionals who are singing from the same song sheet and are actually willing to communicate with each other. You know, you write to each other and, you know, that's just brilliant for me. So this is interesting on so many levels and we need to sort of take it step by step because there's a lot of information to go through.

So there are conditions, there are other conditions, as you know, not just antithospidopid syndrome that increase the woman's risk of clot. And some people have an increased risk just because they have a family history so someone in their family has had a clot. Or when you say provoked clot, that means there's another risk. So if, for example, I had had an operation and I was in bed and immobile for several weeks, just being immobile means my veins aren't working properly, I'm more at risk of clot. So there are some people that just, or a long flight or something like that.

And then some people just get a clot out the blue. It's just bad luck. So you've got this increased risk, but you've never had a clot at this stage initially, but you were told, well, you can't have HRT. So if we just talk about that a little bit, because HRT, as hopefully many of you're listening, there is only three letters. There are different types.

There are different doses. And there are different hormones, actually, and they all have different effects on the clot pathways in the body. So a lot of women will know that they can't take the combined or a contraceptive pill when they've got an increased risk of clot or had a clot. And I'm sure that was probably something you were told maybe or you'd read about. And that's absolutely true. So women who have tablet estrogen, there's a small, and it is a very small,

increased risk of clot. So for most women who don't have a background increase of clot, it's absolutely fine. But if you have an increased risk, you don't want to increase that risk further. You want to make sure you minimize your risk. So that's why we say not to have a combined oral contraceptive or tablet estrogen in HRT because it will increase your risk. So that was the right advice for that type of HRT. But we now have different types of HRT and one of the commonest ways of prescribing estrogen is through the skin as a patch of gel or there's a spray. And as you know, this goes straight into your bloodstream so it bypasses the liver which produces our clotting factors. So therefore there's no increased risk of clot. And actually,

Actually, I'm sure you know this, Maggie, that some studies have shown there's probably a lower risk of clot with transdermal estrogen because it's very anti-inflammatory on our body, and it actually produces some anti-clotting factors, if that makes sense. So it's very interesting that it's probably even safer than not taking anything for your... Well, that's an interesting point, Louise, because when I had my antiphosphalipid blood markers measured, after being on HRT just for a few months, they were actually lower, which I found really fascinating. I think then I'd been on HRT for about seven months.

Yes, and it does seem to have an effect. The problem is, as you know, there's so little good quality research and menopause, and I have a very long list of studies I want to undertake. And this is one, actually, because, you know, wouldn't it be great if people could have HRT to reduce their risk of clocks? That would really throw a spam in the world. And then the other thing is, obviously, estrogen's one part of HRT, but women who still have their womb need to have a progesterone or a progestogen,

which is a synthetic progestogen. And all the contraceptive pills and some of the older style HRTs contain this progestogen, so this synthetic progesterogen. So it acts like progesterone in the body, but it's slightly different. And the slightly different bit means that there is a small increased risk of cloth associated with it. Again, the risk is very small, so for most women it's fine. But for women such as yourself, you really don't want to increase your risk of clot. So anyone taking a progesterone, a synthetic progesterone, shouldn't really take it if they've got an increased risk of clot.

But now we give this eutrogen in the UK. It's called this micronized progesterone. So under the microscope, it looks the same as a progesterone. We produce ourselves. So actually, there's no risk of clot with that. So that's a real tick, isn't it, for the estrogen of progesterone. Absolutely. And then another hormone that many people know about that women produce in large quantities is testosterone.

Now, there is tablet testosterone which should never ever be given to anyone, men or women, because it gets metabolized through the liver. And it can cause lots of effects. And one of the effects is increased risk of clots. You wouldn't do that at all. But we never do that. We give testosterone as a cream or gel through the skin. So in the same way, the estrogen through the skin safe, testosterone through the skin, again, doesn't increase risk of clot.

So it's really reassuring. And so then you might think, well, why isn't everyone know this? Well, you tell me what your insert says of your estrogen and progesterone, Aggie. If you've ever read, yeah. Yes, I have, yeah. And it's best not to because it would frighten you. Yeah. Because it says, and this is something that really urgently needs to change

because the information says there is an increased risk of clot. And that's with every type of estrogen through the skin and progesterone, which is wrong. And this is really misleading and I feel very sad about it actually because women are misled enough. So just when you think, right, I've got the HRT, let me just check, go and look at the patient information leaflet and it says risk of plots. So you have to be quite knowledgeable and determined, don't you, to actually overcome all these barriers to actually apply the HRT and to take it? You definitely do. And I think having someone like yourself who I know I've come to you on several occasions where I've had a bit of a wobble. and I've been told to the HRT for whatever reason.

And then when I've spoken to you and kind of reasoned it out, you know, it all gets put back in perspective again, which is absolutely great. You know, I tend to try and see you twice the year because it's very reassuring. It's very scary. It's very, very scary for a lot of women who clearly don't want to get a clot. And then you think, well, I'll just carry on with the menopause.

I'll just ignore it because it's a natural process, something we all go through. But then actually, as you know, there are health risks of not having your hormones. So yes, you don't want to clot, but ideally you don't really want osteoporosis, heart disease and dementia. And what best way of trying to reduce that risk is why having your own hormones back. But it's also, I completely understand it's very difficult when you have two, three, four, sometimes more healthcare professionals telling you different things. And I find it very difficult because I'm here to try and just provide evidence-based advice. And then if a doctor's saying, no, no, she's wrong, don't listen to her.

What does she know? She's a menopal specialist. How does she know about clot? Well, actually, that's really hard for the patient because they're stuck in the middle. And then where do they go? Who do they believe? And that's, I find the most upsetting thing about my work is that women and patients are often piggy in the middle. And they've got their lives.

They've got their future. they've got other things to think about. And so that's hard, isn't it? For you, I know it's very difficult at times for you to be believed almost that you're allowed. And I hate the word allowed. I think what's marvellous, though, Louise, thrombosis UK website with Professor Beverly Hunt. Yes. I'm a member of a forum called Health Unlocked. I belong to the part that's for antifosphalipid sufferers and lupus. And there are always kind of queries from members on there about HRT. And I think if they're ever in doubt, to have Professor Beverly Hunt on our side is amazing.

So I very often direct people to the thrombosis UK website as well as yours. And I think that's absolutely right. So Professor Beverly Hunt, for those of you don't know, is I'm sort of prefer she as the queen. Yes, she is. She's absolutely phenomenal. And actually with COVID, she's been doing. a huge amount of work because of this risk of COVID. And I approached her before COVID. So a couple of years ago, just to say, look, we're getting lots of women who are refused HRT. And my understanding

of the physiology and the pathophysiology is that it's safe. But obviously, I'm not a consultant hematologist, nor am I a professor of hematology. And what do you think? And she's absolutely, absolutely fine. So I said, well, how do we get this message out there? Because women are suffering. And so we co-wrote a booklet. And I've, got lots of information booklets on Menopause Doctor website, which is soon going to be the balance website. And I decided to write this one, but it was the first one actually that we reference. Normally, it's all evidence-based information we give, but we don't actually give specific references unless we're writing for healthcare professionals. But with this one,

we have added references. We had Professor Hunt and some of our colleagues to review it. And then we've used the same booklet on Thromosis UK. So you can find it on Thromosis UK website. You can find it on the Menopause charity website, and you can find it on the Balance Strait Menopause Doctor website. And I think a lot of women have found that really useful, haven't they? Yes, definitely, absolutely. And Louise, there is another. There's APS Support UK, which I notice doesn't have anything like that on. And Graham Hughes's website as well, Louise.

He's branched out and got his own now. He used to be on APS support. but I actually looked on his as well and it would be great to get it on both of those, I think. Well, another job to my list. Yes, absolutely, because I think it is very important. The other thing that I did through Thrombosis UK, they had a week of webinars, and I did a webinar for healthcare professionals about clot and menopause and HRT, and then I did another webinar just for patients, actually,

and they're both available to download and listen through the thrombosis UK website. And it was very reassuring because Professor Beverly Hunt was chairing the session. And I was actually very scared because she's so much more clever than me. And afterwards she said that was really good because it explained it very clearly and she was completely agreeing. And just to have another, like you say, healthcare professional that sings from the same hymn Brooks that reassure patients I think is really important because they had a patient before. a lady who very eloquently told her story. And it was very sad actually because she had really

extreme vaginal dryness, really extreme. And she was on a blood thinning because she had had a clot. And no one would even give her vaginal estrogen. And she went to doctors in the UK and abroad and they all said no. And so this is wrong on so many more levels actually than you being told you can't have HRT and you didn't have a clot. Because she's on a blood thinner. So when you're a blood thinner, actually you can have any type of HRT because you've got something that's going to thin your blood. So the risk of a clot is low. I mean, obviously, you want the safest type. So I wouldn't recommend people who have already seen. You could do. And even Beverly Hunts says that if you were on a blood thinner. The other thing is that the localized vaginal hormonal

treatments do not get absorbed in the body. So that means women can have localized vaginal treatments, even if they can't take HRT for whatever reason. So usually this is women with estrogen receptor positive breast cancers who don't want HRT in the first line. They can use estrogen and it doesn't get absorbed. So this poor lady had been suffering for years, not even wanting HRT, she just wanted to be able to sit down and wear underclothes. And was refused. And that's really sad as well. So we have to be really clear. And then going back to this word that I hate called allowed. What gives doctors authority to say you can or you can't? I don't think I've ever, correct me if I'm wrong, Maggie. I've never said to you, do not drive 100 miles an hour down

the motorway because you might kill yourself driving. So how can I dictate how you rule your life? Yeah. Do I say you you must never ever smoke because that's a risk of clout with smoking? I would advise you that I don't need sense of and of course you don't smoke, but I'm just using it as a theoretical argument, really, or discussion point, that of course, I would recommend that patients don't smoke. I would recommend that they eat the best diet and I would recommend that they exercise. But we all let that slip. We make decisions every time we get out of bed. We decide what time to set our long clock. We decide how we're going to live our lives. And so I feel very strongly that as a doctor, all I can do is advise patients based on the best available evidence.

And then it has to be shared decision-making in that consultation process. So I think when doctors say you're not allowed something, that should ring warning bells in my mind because it's not about. Yeah, absolutely, Louise. And that's why I decided to change consultant for the antifosophilipid syndrome because I thought, well, hang on, you're telling me I'm not allowed to have that. And yet my quality of life, you're not listening to me. quality of life. You know, it was just terrible, basically. And I didn't even recognise myself.

So it wasn't hard, yeah, very hard. And what is quite annoying, I was told HRT, you know, was a risk with clotting. But they forget to tell you the other factors that are probably, well, they are far more of a risk, like inactivity, dehydration, smoking and being overweight. Do you know what I mean? All those factors probably give you a higher risk of a clot. Yeah, and I think that's very interesting. It's looking at the bigger picture. And as you know, we know that perimenopause and the menopausal women

who don't have their hormones back are more likely to increase weight. They're more likely to become obese. So you're absolutely right. Their risk of cloth increases, but also their risk of heart disease, osteoporosis, diabetes increases when women are overweight. obese. So it's really important to look at the other reasons or the reasons for refusing treatment as well. You know, you are a woman and you just don't happen to have antifospholipid syndrome. You're not determined by your antifosophilipid syndrome. There's more to you than that.

Exactly. You can still sadly get other conditions as well. So, you know, you need to be thinking about, well, how, what other conditions? I'm, you know, I'm more at risk of heart disease. I'm more at risk osteoprase because you're very slim as well. So you don't want to fall over and fracture a bone. So it's looking at other things that are concerning you as well, which is really important, isn't it? Yeah, exactly. And when I have my dexter scan at your clinic in December, it did prove that, you know, I've got osteopenia. So I felt fortunate that I am on the HRT. Yes, and it'll be very interesting to see how your dexas scan improves with time because I don't know, but you might even have had osteoporosis if you weren't taking HRT.

And I saw someone in my clinic actually recently who is in her late 60s, and she'd missed the boat really for HRT because she'd been refused it. So she started it about four years ago when she was in her mid-60s. And she'd had a dexter scan before I saw her in the clinic, and she had osteoporosis. So one of the reasons she took HRT was to try and help her bones. She had a scan just recently, and it showed normal, in her spine and osteopenia, so some slight thinning in her hips, but no trace of osteoporosis.

So she was absolutely delighted. And she was a doctor and her doctor said, oh, that will be those bisphosphonates you'll take that I've been prescribing for you. And she said, well, actually, the skin in my cupboard, I've never taken them. It will be the HR thing that I take. And he looked absolutely furious with her. But it's, you know, we know that estrogen has a lot of benefits. And it saddens me actually because there was a big study when we're thinking about clot.

that you've probably seen it that came out in the British Medical Journal. It was an analysis of lots of studies looking at the difference of clot risk with tablet estrogen with transdermal estrogen. And that re-confirmed what we know already, that the risk was with tablet, not with transdermal through the skin estrogen. So it was very reassuring. And I actually was going on Lorraine ITV that day. And early in the morning, someone email me and said,

oh, you've got to read this study because they might talk about it. And I read it. And I thought, oh, praise the Lord. this is lovely because it's reassuring everything that we know. Do you know what the papers did? All they did was say, risk of clot with HRT, higher than previously thought. And I was like, what are you talking about?

This is only with testosterone. We should be changing it and saying, brilliant. I'm so naive, I suppose, in the media. I'm learning more, the more I do in the media. But it makes you realize they need to sell the newspapers. They need a story. They didn't want to know a new story about HRT. They wanted something bad again.

So, you know, it was good I could go on to Lorraine to reassure, but I shouldn't have to. Yes. We should be finding out the good parts of HRT. You know, it should be on the front page, how safe it is and how effective it is. Yeah. Not all about the risk. Isn't it frustrating? They're very keen to go on the negatives and on the attack about it, but they don't want to put forward the positives.

I find that very frustrating. It is very frustrating. One of my colleagues was watching an Instagram live by a gynaecologist in America. yesterday who was just saying almost how dangerous HLT was and how it wasn't effective and the studies haven't shown this, that and the other, and really condemning HRT really. And I thought, how can she say this really? Because it's very hard when we've got limited evidence, but we're not arguing about a really toxic drug. We're not arguing about some new drug. We're just arguing about our own hormones, actually. Yes. We just want what we've had all our lives, don't we?

We wouldn't be arguing like this about what's the evidence with thyroxin. Does thyroxin show that there's a increased risk of this or a risk of whatever? Because the studies would never be done because why would there be a risk? Or insulin as well, you know, for many years they've been giving insulin that's been derived from pigs. But it's the only insulin it had and it kept people alive. You know, obviously now it isn't. There's changed, thankfully. But it's just this whole thing that advances in medical.

and improve, you know, I often think people with diabetes are very similar to people who are menopausal because they still have the same health risk. You're one of the reasons that you treat diabetes aggressively with insulin and making sure blood sugar is normal is because do you want to reduce the risk of heart disease because diabetes have an increased risk. Sadly the same with the menopause. Let's even not think about all the dreadful symptoms you were experiencing, but let's try and optimize your health and reduce your risk of heart disease with having your own hormone. Exactly. Yes. Well, I'm a much nicer person to be with. I can honestly say that. I think my boys and my husband are really

grateful to you. Do you think you've got enough confidence now, Maggie, to keep on your HRT going forward, despite what other people might say to you? Yes, I do. I really do. And I feel confident to put it out there as well. And so on the Health Unlock Forum, there was a question came up on Sunday from somebody saying, help, you know, I need HRT. I know I do. What am I going to do? So I was able to pointer in the direction of your website and also thrombosis UK.

You know, so, yes, I feel confident. It's amazing. And I'm going to be out mine. But I'm hoping that your confidence will be given and shared to many other people who are listening or will read about this because it is so important that we work together to help each other actually. so we're going to improve our future health. So I'm really, really very grateful and want to thank you again for giving up your time

and sharing your story, because I know it's not always easy talking about your own personal experience. Well, thank you for inviting me too. I'm very grateful as well. So just before we finish, could you say three tips really. So for women who either have had clots in the past or have a history or a sort of family history or an increased personal risk of clot, those women who are listening who've got this, risk and they're either perimenopausal or menopause and then they're being refused HRT. What three things do you think they should do which might help them receive the right

treatment? Well, number one, listen to their own body, keep a symptom diary. There's one on your balance app, which is brilliant. Trust your instinct. You know when things are not right. So that's point number one. Don't let anybody try and fob you off. Number two, find a menopause specialist and also a sympathetic.

APS specialist or lupus specialist if it's primarily lupus. And encourage and facilitate communication between your clinicians. Also, you know, try and get your GP on board as well. Sometimes they're kind of going on out-to-date information. So, you know, the fact there is now up-to-date information out there and also in the form of your books as well as your website and your clinic, I think that's all really good and it's quite empowering because it's up to date. It's not out of date.

And then thirdly, basically share information and communicate with friends, family and colleagues. Let them know what you're going through and the more we talk about it, you know, the more help we can give to one another. Yes, absolutely. I think sharing is so important and making sure that we share evidence-based information and knowledge. So just to let you know, again, the booklet we've talked about is freely available on thrombosis UK and also on my menopause doctor and balance website. So make sure you have a look, print it off, take it to your GP or your healthcare professional and ask them just to read it, look at the evidence and then maybe make another appointment to discuss HRT in detail. So thank you ever so much today, Maggie. No, thank you. Lovely to talk to you.

Thank you so much, Louise. Great to talk to you. For more information. information about the perimenopause and menopause, please visit my website, balance hyphen menopause.com, or you can download the free balance app, which is available to download from the App Store or from Google Play.