Transcript
Speaker: Hi, I'm Sylvain Bertelot and you're listening to On One Condition, podcast to raise awareness about health conditions by listening to people who live them every day. My guest today is Caroline McNamara and we're going to talk about acromegaly.
Speaker: Hi Caroline, thank you for joining me. How are you? Hi, Sylvain. Thank you for having me on the podcast today. I'm good, thank you. Great. Before we talk about Acromagaly, I love starting with a song. So which song did you choose and why?
Speaker: So I chose Natasha Beddingfield's Unwritten. Basically, that the gist of the song is like an uplifting song. And it's kind of saying that no matter what has gone before, every day is a new day that you can start fresh.
Speaker: I'm very much someone who doesn't kind of, you know, colour within the lines and I, you know, I call things out. And, you know, it's all about just making the most of your life the way it is and also starting each new day with with a blank page, a fresh approach.
Speaker: And I have like a glass half full mentality. I'm quite upbeat. And that song, you know, when you heard hear the first few bars and how kind of upbeat the song is, it just kind of resonates and the words in it resonate as well. So, yeah, it was a perfect choice.
Speaker: Okay, nice. And I love what you said about not being the one who colour between the lines. I like that. She says that in the song. Yeah, absolutely. Let's start with acromegalia. I have no idea what it means. So could you share with us what it means and what the symptoms are? please Yeah, absolutely. So I'm a little bit of a linguist as well. So the actual word means large organs, believe it or not, acromegaly. I think it's from Greek in origin.
Speaker: But what it is, it's basically an excess of growth factor, IGF-1, in the body that is usually caused by pituitary tumour.
Speaker: on the pituitary gland, which is, pituitary gland, for those that don't know, it's kind of located behind your nose in the middle of your head. The pituitary gland is known as the master gland and it controls all of the hormones in your body.
Speaker: So when you have a tumour on your pituitary gland, It causes excess growth hormone throughout your whole body and some pituitary tumours affect other hormones in your body.
Speaker: Specifically, acromegaly is related to excess growth hormone, excess IGF-1 caused by a pituitary tumour. and Okay. Wow, so already a lot of details that make me want to ask so many questions.
Speaker: Growth hormone like has a lot of impact in the body, but is that something that affected you as you were growing up, or is it something that happened later in life?
Speaker: Yeah, so when when when people hear the word acromegaly, they have heard of it at all, they think of Andre the Giant, they think of extremely tall people. And certainly if you are diagnosed before the end of puberty, then often you will grow in height.
Speaker: and If you're diagnosed after puberty, and I was in my 40s, just 40 when I was diagnosed, when I had my tumour, Your growth plates are fused by then, so your limbs don't grow, but everything that can grow does.
Speaker: So before I was diagnosed, I had odd symptoms, but my hands grew wider. In the years before I had, because pituitary tumours very slow growing, in the year before I had carpal tunnel surgery on my hand, because the yeah the that's what one of the...
Speaker: complications that people have with acromegaly due to the growth in the in the wrist my cheekbones grew larger i had general swelling in my whole body my whole face had very different to how I look now my whole face was swollen you get frontal bossing so the area above your eyebrows starts to protrude and which I had as well your feet grow I also had oddly.
Speaker: So my tongue grew. So I was biting my tongue. And for anybody that has bitten their tongue before, it's absolute agony, you know, down the sides because my tongue was basically too big for my mouth. It sounds very odd. and it was very odd. But yeah, I was constantly biting my tongue and I couldn't figure out why on earth I was biting my tongue.
Speaker: It also affects things like menstruation. So when I had my symptoms, because of my age specifically, I thought I was going into like an early menopause. And I just thought, you know, this is me now, you know, with this kind of crazy looking face and, you know, these odd large hands and had excess skin on my feet. So all of these very, very odd symptoms. I can see that you're frowning. Yeah. Yeah, exactly. I mean, who would have thought excess skin on your feet would be down to a pituitary tumour. But, you know, it's quite funny because after my surgery, I literally shed so much skin off my feet.
Speaker: I couldn't even make it up. It was unbelievable. and Okay, well. Yeah, yeah. So how were you diagnosed then? Because I can imagine that it's not necessarily straightforward. no not at all.
Speaker: Often patients have seven to ten different symptoms that all don't seem related, you know, so it's very difficult to diagnose. For me, what happened was in 2014, I had particularly bad bike crash, a push bike. So i was I'm a cyclist and I was doing triathlons. and I was training for a triathlon when my accident happened.
Speaker: And I was very fit at the time. And I could, you know, do a sub two hour half marathon, just turn up and, you know. was super fit, basically. So I had this accident and broke many bones and punctured my lung. And, you know, that's by the by. But when I was trying to recover from that accident, I found that my recovery wasn't going well at all. And I kept getting these odd infections.
Speaker: I had sinus infections. But normally, if you have something like a sinus infection, you recover from it very rapidly. You know, go to your GP or maybe you taken off the shelf, remedy and you're back up to up and running within, you know, week or so.
Speaker: but these infections were kind of flooring me and I was on the sofa and barely able to make it to the kettle. I had such a ah lack of energy and that happened a couple of times and then i had had an odd impetigo infection on my face. So these great, you know, huge boils.
Speaker: never had anything like that before. And then I had an issue with an eye, had a corneal infection. all these very, very odd things. I went back to my GP and I said, something's going on. No, I'm not quite right. i keep getting all of these crazy things happening with me.
Speaker: you know, is there something wrong with my immune system or, you know, could we do some bloods? So of did they did standard bloods and they came back all fine. And I said, well, ah okay, they're fine. So we're going to need to do some some different tests then or so or something because I'm just not well.
Speaker: So I did some IgE tests, but IgG, IgM, IgA, one of them came back high. I was referred to an immunologist, I'd been to my GP obviously lots of times, with all these different things going on. Of course, the GPs, they can only address one thing at a time.
Speaker: So I had the opportunity to sit down and say, I've got, you know, something on my feet, something on my face and I'm biting my tongue and my throat feels swollen, but there's no pain. I never had the opportunity to go through all my symptoms.
Speaker: So I was referred to an immunologist and went to see the immunologist. The first thing he said was, OK, so you're here, you're sat in front of me. Tell me about you. don't know if said you're married, but you're not wearing your wedding ring. I said, yeah, I can't get my can't get my ring on anymore. My fingers are too swollen.
Speaker: He said, oh, OK. And then slowly but surely, he kind of unraveled with all of the things and, you know, asked me lots of ah very targeted questions. And at the end of that meeting, he said, he said, I don't think you've got anything wrong with your immune system.
Speaker: What I do think is that you may have a pituitary adenoma that is causing excess growth in your body. He said, so send you for a brain um MRI and we're going to do an IGF-1 blood test and we'll see what comes back.
Speaker: And what came back was growth hormone, three times the level what it should be, and a large tumour on my pituitary gland. Okay. That must be scary.
Speaker: Well, you know, like a lot of people, ah love Dr. Google. And I've been Googling my heart out after this appointment, you know, and I'd come up with all sorts of things, but I had not come up with acromegaly. So I didn't, but at the time when I was diagnosed, I was on my own in the in the room, you know, at this consultation because i thought I was just going for, you know, something to do with my immune system that was going to be very benign and, you know, just very general.
Speaker: yeah And just sat in the car and I thought, I've got to go back and tell my husband that I've got a brain tumour. I just couldn't, I couldn't, couldn't, couldn't compute it in my head. was like, as that is that why he's just told me in very nice words, you know?
Speaker: And it's like, wow. so yeah, it was, it was a shock. It was a shock. But you have to kind of push through these things and get on with it, basically. I mean, I wasn't feeling very well. So I wanted, i was, I was happy to know what it was actually. yeah And to have an explanation for it so that I could start to get better and start to feel better.
Speaker: How long did it take for you to get this appointment with the, was it an immunologist? Yeah. So I'm very fortunate in that I've got private healthcare. care And at that point I'd waited quite a long time and been quite ill for some time.
Speaker: So I did see a private immunologist and he then refer referred me back to the NHS, to a neurologist who would then do my surgery. Yeah.
Speaker: So I had transphonoidal surgery. So that's where they go up through your nose into your head, basically, yeah to the pituitary area. And then they remove excess bone and tissue to be able to get to the tumour. And then they remove it back out through your nose.
Speaker: And that was that was at the famous St. George's Hospital in South London, Tutankhamen, where I had that surgery. Were you asleep or awake?
Speaker: Oh, no, asleep. Yeah, absolutely. Yeah, yeah. yeah So they have like a knee nose and throat specialist as well as a neurosurgeon that do the surgery. It's quite an involved surgery.
Speaker: So I had the appointment with the immunologist and I think it was around the September of 2016. And then my surgery was the following. It was June 2017. Okay. okay Wow.
Speaker: That's a long time knowing that you have a brain tumour. Mm-hmm. How was it from a and mental health point of view? How did you deal with the waiting?
Speaker: Just by keeping busy with other things, really. Taking my mind off it and just trying to kind of get myself into the best shape physically and mentally that I could be to deal with something like that, you know, to have to get through something like that.
Speaker: There's not that much crap that you can do beforehand, really. I mean... I didn't have any medication beforehand because the idea is that if they can take all the tumour out, you'll be pretty much cured, shall we say, to a degree.
Speaker: Unfortunately, if you've got an excessive growth hormone in your body for any period of time, it already does damage. So even if you have the tumour out, you still have problems afterwards, unfortunately, particularly with your joints.
Speaker: It causes that growth in the joints. And so you can have early onset osteoarthritis and things like that, even if the tumour is removed. So... it's You know, you've got to kind of come to terms with the fact that you might not, they might not get all the tumour out. And even if they do, you might have lifelong things that you're going to have to deal with afterwards.
Speaker: Yeah. Did they manage to take it all out for you? No. No? No. So before I went so into surgery, the the neurosurgeon said to me that it would be like, almost like peeling an orange and that hopefully you'd get all of the skin off the orange and the tumor would be gone. You know, so it was attached basically. They said that if the tumor had started growing through, so say the peel had gone through the orange as such, which it obviously it never does, but you know you know, that kind of concept.
Speaker: If it started moving through those barriers and affecting things like speech and vision, then they would, you know, they'd just take as much tumour as they could and they'd leave as little as possible behind, but not affect deficits, not cause deficits, basically, in function in the patient.
Speaker: So my mine had started to grow through the the the barriers. So they literally had to kind of shave off what they could and leave residual tumour behind. And did you have any other impact apart from the growth hormone?
Speaker: I have also have ah raised prolactin levels as well. So my tumour also does that in terms of my hormonal effects, if you like.
Speaker: m Okay. So some people have what's called a prolactinoma, which only affects their prolactin production. Okay. Well, so the impact on your body and your symptoms, did it happen more or less all at once or is was it something progressive?
Speaker: No, that the pituitary tumours are slow growing. And I think the fact that the symptoms come on quite slowly means that yeah even yourself and the people around you don't really notice it.
Speaker: But if you look, so so when I had my second appointment with the immunologist, he said, look back through some photos. after like the last 10 years and bring them with you and see if you can see changes.
Speaker: And i mean, my face was so swollen at that point. It was quite clear that there were ah my face had actually changed massively because of the excess growth hormone causes your tissues to swell, basically.
Speaker: So I had excess growth hormone. and Well, it's it's in your whole body, isn't it? That it's secreting it. So like my throat tissue was swollen. My face was swollen.
Speaker: My body was swollen. My feet were swollen. Everything was swollen. I should have said before as well that one of the unfortunate symptoms of acromegaly as well is that, don't know if you'd call it symptom or not, but you have a raised risk of colon cancer.
Speaker: Oh, okay. So patients that have acromegaly are regularly offered colon screening, basically, to catch that early. It's two to four times the risk of colon cancer in somebody with acromegaly.
Speaker: Oh, okay. And I've had that procedure several times. I've had precancerous polyps removed. So it's something that someone with the disease has to be very aware of.
Speaker: Okay. and I went vegetarian a couple of years ago to try and kind of maybe have an impact on that. Interesting. Do you think it has had an impact?
Speaker: Well, my last colonoscopy was clear. So I think yes. Wow. What do doctors say when you mentioned that you've gone vegetarian and it seems to help?
Speaker: ah Yeah. So i I'm reviewed annually now by endocrinologist that I see. Yeah. So I told her that, yeah, I've gone vegetarian and that my last one was clear and she was, you know, super pleased to hear it.
Speaker: Hopefully she'll spread the word. Yeah. And I'm spreading the word now. Absolutely. Yeah. And it's not the first time I hear like of a change in diet that has a positive impact on the body.
Speaker: that's so That's a different conversation, I think. Absolutely. absolutely Going back to the slow progression of your symptoms, it seems like it's taken time for you to actually get to see an immunologist because of like the GP only focusing on on one symptom at a time.
Speaker: But at the same time for you, I imagine that there's a point where you look back and you're thinking, well, no, that's sort a lot of things together. Was there a period of time where you you didn't really realize and you just dismissed yourself some of the symptoms because it wasn't that obvious?
Speaker: I seriously thought it was menopause. Yeah. I seriously thought I was just getting old listen and getting older and I was aging. And the you know that i think the fact that my period stopped as well just made me think it was menopause.
Speaker: I had no reason to think it was anything else. I wasn't having headaches at that point, yeah you know, that made me think, oh, it must be something. I'd never heard of the disease, you know. chi to it' so It's a rare disease. I'd never heard of it.
Speaker: And there was no reason. There's no family history of anything like that. So there's no reason for me to think that that was what it was. You know, when I hear about tumors or tumors in people's heads, I think – I associate it with things like dizziness and headaches and vomiting and things like that, you know, and I never had any of that.
Speaker: So I just totally didn't join the dots at all. Even when I had, even afterwards looking at it and seeing that, you know, the carpal tunnel and the facial swelling and all of that, that it's all symptoms. I never, ever put it all together, ever.
Speaker: Okay. so now, obviously, you've already mentioned that you've shed skin on your feet, for example, that your face looks different to what it was when you were diagnosed.
Speaker: Do you know how it goes back to normal? And does it actually go back to normal? Yeah. So basically, when your growth hormone normalises, everything shrinks back that can.
Speaker: Bony changes stay the same, but the tissue swelling, for example, goes down. so So those things are resolved. Periods come back. you know So things things then start to go back to normal.
Speaker: What I found was that whilst all of my symptoms reduced, so after the surgery, it was like, OK, so we'll do an MRI in, I don't know, 12 weeks, see how you're going, whatever.
Speaker: And I didn't, thankfully, didn't need any long term medications coming out of hospital. But what I found was in the months that followed was that whilst my symptoms were greatly reduced, they were all still there.
Speaker: So I was still slightly swollen. I was still having headaches and I was still feeling pretty rough, still getting sick, just still feeling unwell.
Speaker: Do you know what it's related to, the feeling unwell? Yeah. So at this point, I was seeing an endocrinologist in a general hospital. They were doing an IGF-1 test when I would go along to the hospital.
Speaker: And the IGF-1 test was coming back normal because an IGF-1 test is just your growth hormone at that specific point in the day. It's not looking at your growth hormone over a day, let's say.
Speaker: So that result was coming back normal. And that endocrinologist was just saying, oh, you know, you're fine. Your your results are normal. And there were some other things that that happened with that endocrinologist that I wasn't happy about, like prescribing aspirin, which I was then taking with no stomach protector because that hadn't been prescribed, which can cause gastric cancer, which I only found out when I saw my gastroenterologist for a colonoscopy and he was like why are you taking aspirin with no stomach protector I said I didn't know didn't know I was supposed to have that said yeah you should not be taking aspirin on a bare stomach you really shouldn't anyway so cut a long story short I went back to my GP and I said I want to go somewhere else for my pituitary care I want to go somewhere that specializes in pituitary disorders
Speaker: That's when I was referred to St. Bart's Hospital in London, where they have a pituitary centre. And, you know, massive shout out to them because they've been absolutely fantastic the last site five or so years.
Speaker: So I went to them and saw an endocrinologist there and they did what's called a growth hormone day curve test. So you go to the hospital in the morning at eight o'clock and they take blood periodically through the day, every three or three hours, approximately until like the last ones are like seven o'clock at night.
Speaker: They get a view of what your growth hormone is doing across a day rather than an IGF-1 test, which is just a very immediate result. And what it found was that my growth hormone was still too high.
Speaker: The residual tumour was still producing growth hormone, which was still causing all of my symptoms. So I started a drug called Lanreotide.
Speaker: It reduces your growth hormone levels. Okay. So over a period of a couple of years, I started on the lowest dose and then went back to my endocrinologist. They'd do another day curve, up the dose, do another day curve, up the dose, do another. Yeah. So that went on for several years. And I'm now on max dose lantarotide to keep my growth hormone in check.
Speaker: Is that something that you think will carry on? the life. yes Yeah. Does it have any side effect for you?
Speaker: Yeah, it does. and Many people find that they have gastric issues with it. Oh, okay. Okay. So it's something that you do every four weeks. ah It can also cause gallbladder problems as well, long-term. Okay. And gallstones. That's what certainly what my my research has has told me, that um that is an unfortunate long-term side effect, is issues with gallstones and gallbladder.
Speaker: And yeah, I have yeah gastric issues normally you know for a couple of days after the injection, which I ah do that every four weeks. And I do that myself. Okay. And in terms of your fitness level, is it back to normal now? You know, it's quite funny because literally just last night, my husband was saying that he was going to sign me up for a half Ironman next year.
Speaker: it was like kind of coming full circle from having my crash, which I was training for a half Ironman, which I did that. which i never I never did the half Ironman. I'd never got back to it. But I did ah for the first time in eight years, I did a mini triathlon two weeks ago.
Speaker: And massively enjoyed it. I mean, since being better, I've done two marathons. I've done London marathon twice wow ah and enjoyed it twice. I've swum. I've done some serpentine, which is like a two mile swim in the serpentine in Hyde Park.
Speaker: I've done ride London, you know, the hundred mile. bike ride around London so I've kept fit but I've never kind of joined them all together and done the triathlon you know a long distance triathlon so we'll see but I'm certainly in better fitness than I was but what i do now is manage my energy levels otherwise I get fatigue So what I do is I kind of work out hard, if you like. So do a run one day, but then the next day I won't do anything energetic. I'll do like a walk or some yoga.
Speaker: And then the next day I'll do something more energetic, like a bike ride, rather than trying to do everything day after day, because that would be too much. If I were to do that, I'd end up like having to take a week off or week on the sofa or something, and I wouldn't be able to do any exercise.
Speaker: So I'm very much in tune with my body and what my body will let me do, if you like. So I'm very aware of like my energy levels and not letting those dip because fatigue and energy levels was something that I really struggled with when I was being diagnosed and in like the throes of it. you know i was really That was a real ah real symptom for me that had to deal with.
Speaker: Yeah. And is that something that you discovered the hard way? Because what I imagine is that I would go back to try to like regain my my fitness level, but then suddenly you realize that you you crash and and you need adapt. Yeah.
Speaker: Absolutely. And it's funny because it was so bad. I remember and I tell this story to people. There's two stories actually that I tell to people. One of them is that so work were very understanding at the time and I would with the fatigue and, you know, i was starting to get headaches and things before my surgery. And I did what I could when I could. But I remember one day I went to work I started work at eight o'clock in the morning, relatively short car journey there. I got there at eight o'clock.
Speaker: and at 8 10 in the morning i said I've got to go I'm too tired I'm going to go home got to go home and I just had to go home and sleep because this pressure would build in my head and I just you just have to sleep and another another weird thing that happens when I get that is that my eyeballs it hurts to move my eyeballs it's it's such an odd such an odd feeling it's very unpleasant and Yeah. And then the other one that i tell people is that don't know if you've ever heard of this thing called spoon theory. And you give yourself a certain the amount of spoons a day. But yeah, I did some of that. So what I would do, what i realized was that I could only do like one thing in a day. So normally you get up, don't you? You go shopping and or you maybe you go to work or you come home, do some housework and you make dinner and, you know, go maybe go for a swim or, you know, you do all those things, don't you, in a day, possibly, you know, lots of things.
Speaker: I could only do one of those. I could shop or I could make dinner, but couldn't do both. And I remember one specific day, my husband drove me to the supermarket, and which was probably about a five or 10 minute walk. But i said, no, you've got to drive me because I can't.
Speaker: And so we went to the supermarket and we're walking around and we got halfway around and I said, I've i've got to go. We've got to leave. We've got to leave. got to leave And we had to drive the five minutes home, ditch the shopping instance and leave, you know, i just couldn't do it.
Speaker: Yeah. Yeah. So I'm not like that anymore. It's incredible that you've got back to being able to run marathons. Yeah. Yeah. Yeah. It's amazing, isn't it Yeah. I mean, if I think about it, I can't really believe it myself either.
Speaker: Yeah. It's yeah, it's crazy. So now do you still have to go and get like colonoscopies regularly or do you need to do any more and MRIs in the future?
Speaker: So I see my endocrinologist on an annual basis now. Okay. and the month before I see her, I get a battery of tests done at St. Bart's Hospital.
Speaker: And then she goes over the results with me. So she talks to me about my symptoms, asks me how I'm feeling. And then based on my symptoms, she decides, you know, if I need an MRI or not.
Speaker: I haven't had an MRI in a long time because the tumour is quite slow growing. None of my symptoms are indicative of it growing again. So I don't i don't need an um MRI. I do have to keep up with the colonoscopy screening.
Speaker: I have had breast cancer as well since then, 2018, early breast cancer. So I was paranoid about my health by this point and had a very small pimple.
Speaker: That was actually nothing, the pimple, but they compared it with old imaging and realized I had calcifications in the breast tissue, which is call it stage zero breast cancer.
Speaker: So, yeah, I had lumpectomy and radiotherapy for that in 2018. So, yeah, had to also recover from that. So, yeah, have screening for that as well. So I am, you know, literally constantly monitoring my body now. Yeah, that's a good thing to do. Yeah, absolutely.
Speaker: yeah Wow. What a journey. I have one last question for you. Okay. Which I'm asking everyone. What's your happy place? The place where you feel at peace?
Speaker: I'm very lucky to have a house in France. Oh, okay. Near Carcassonne. And i think that's probably my happy place. When I go there, I cycle, switch off, chill out.
Speaker: Just me and my family. Beautiful surroundings. And yeah, just relax. That's my that's my happy place. Just kind of forget everything for a few weeks. And enjoy the cuisine from southern France.
Speaker: Yeah, to a degree. Maybe not Castellet. Well, no. Yeah, no, especially if you're vegetarian now. Yeah. What strikes me when I read my notes is how difficult it must have been to actually sit down and one day and and think, well, no, that's too much. There's too many things going on because it it feels like it's something that for some time was hidden in in plain sight.
Speaker: think it probably was. Yeah. Yeah. It was all the but all the infections that just didn't add up. That was what made me question Okay. okay You know, just just those nonstop infections. Otherwise, if I hadn't have had those, I just don't know where it would have ended, you know, what would have been the trigger that made me go down that road.
Speaker: Yeah. Well, thankfully, you don't need to worry about that anymore to some degree. from Yeah. Well, thanks a lot for your time. i absolutely loved talking to you.
Speaker: And I hope you do do your half Ironman. I want to hear about that. Yeah, yeah. Fingers crossed. ah Thank you so much.
