AcroTales
AcroTales
Episode 22 - Chrissy
In this episode of AcroTales we hear from Chrissy who lives in the Cotswolds in the UK. Chrissy is 44 and was diagnosed in 2013.
Everyone's AcroTales is unique and comes with surprises, but there's no doubt that Chrissy's tale is one of the most jaw-dropping stories out there. Listen to the incredible way she received her diagnosis and how she has embraced life since treatment.
Hello and welcome to AcroTales, a regular podcast that explores the fascinating world of Acro Megaly. My name's Dan Jeffries, and I was diagnosed with Acromegaly in 2007. And in each episode of AcroTales, I'll be talking to fellow acromegalics from around the world about their journey with this unique condition. It's episode 22, and I am really pleased to welcome Chrissy from the Cots Worlds in the UK. Chrissy is 44 and was diagnosed around Christmas time in 2013. Chrissy, welcome to AcroTales.
SPEAKER_01:Hi Dan. Thanks for having me.
SPEAKER_00:You're very welcome. So about 10, 11 years you've been since diagnosis, and we all know there's plenty of years before that, before the diagnosis. Tell us a bit about you know the signs, what what sort of led up to your diagnosis?
SPEAKER_01:Oh goodness. Um a bit uh like probably a lot of people, uh I forget what normal felt like and what symptoms were symptoms. Um, but from what I remember from late teens to 20s was a lot of jaw pain, a lot of headaches, um a lot of kind of um anxiety. But that was, I thought, just a part of being young um and growing up. And yeah, I guess to that led to diagnosis. Um I was incredibly, incredibly fortunate to have uh a friend who knew how to connect the dots. Um I had been moaning about said symptoms for a long time and had been to doctors and of course been dismissed. Uh, you know, especially as a woman, uh you tend to get dismissed a lot uh for the kind of grey symptoms that are quite elusive. Um but that led that really led to diagnosis was eventually um a growing sense of not recognizing my own face in the mirror. Um and it was a combination, it was a it was a kind of uh three key moments that made the bell ring or the penny drop that something was ultimately very wrong. Uh was uh I come from Portuguese heritage, uh, so my family uh were immigrants here in the UK for a long time, and they've all since moved back. And uh I go and visit my family every six months or so, and it was seeing cousins for more than six months at a time when they would see me. Uh one very outspoken cousin who never held back would always say, Oh my god, cuz you uh you look weird. Something's off. Are you are you alright? And it was that one slight criticism that validated how I felt. I said, For for once, someone is seeing what I'm seeing. I'm not, I look different, don't I? And that was validating in itself, and then it was um me having to sell my shoes. Um, I put a photo uh post up on Facebook uh with my uh eBay link. I was selling them on eBay at the time, and I gave my Facebook friends first dibs to buy them before anyone else. And uh a very another outspoken friend uh commented on the post saying, uh, why are you selling all your shoes? And I said, Because they're nice shoes and they're they're too they were too expensive to just take to the charity shop. I want to get some money back. And she said, No, no, no, no, why are you selling them in the first place? And I said, They just don't fit anymore. And she said, Are you pregnant? And I certainly wasn't. I was very, very single at the time, and I said, Hell no, and she said, Well, there's no other reason why your feet would no longer fit in your shoes, and I said, Yeah, so I'm I'm bulking up, I'm re I'm I'm in the gym a lot, you know. I'm just I'm getting bulky.
SPEAKER_00:Um the muscles in my feet, they're getting bigger.
SPEAKER_01:Yeah, I've always had wide feet, so what? And she said, and she's a Glaswegian and she never minces her words, and I could tell she was mincing her words. And uh, and she said, You've been moaning about other stuff as well, haven't you? And this was this passed on to a private message, and she said, You've been moaning about this, about no periods, about hair everywhere, about jaw pain and dental work and carpal tunnel syndrome, X, Y, Z, many symptoms. And and I said, Yes. What do you mean? What are you trying to say? Don't hold back, and she said, You're gonna laugh at what I'm gonna suggest. Um, and I said, just go ahead. And she said, I think you have or could have acromegaly. And at this point, I need to give some context as to as to how or why she knew about acromegaly, is because this particular friend who I'm very close to and we've known each other for a long time, three years prior, I had accompanied her own journey going through Cushing's disease. Wow. So she had learned a lot about pituitary tumours in every shape and form. And so I had been to hospital to see her when she had neurosurgery. She had a worst-case scenario. Everything that could go wrong did go wrong. Um, she's okay now, but she is pan-hypo, complete on complete HRT. She has no pituitary gland activity whatsoever, uh, and Addison's and all sorts. So it's um, I had also been educated through her journey, and so I knew that the likelihood of me having having acromegaly was extremely low and rare. And so I did laugh and I said, You're absolutely ridiculous. You're seeing pituitary tumours in everyone now, just because you had one doesn't mean I have one. And she she did say, I hope I'm wrong. I just want you to prove me wrong. I want you to go to your doctor and suggest ruling it out. And I said, They're gonna laugh at me. Don't be ridiculous. It's it's it's just me bulking up, it's just me, you know, I'm just bad genes, whatever. And she says, No, I'm not letting this go. I've connected the dots, like I, you know, and if you I'm not telling you to Google it, but if you did, you you know, just just go with it. And I went, ah. Luckily for me, at the time I was in a corporate job and I had a very cushiony uh um private healthcare. So uh we had an on-site GP once a week. I couldn't get one with my own GP, so I saw this private one at work. And lo and behold, when I suggested Acromegaly, he laughed and said, and I said, Do you know what Acromegaly is? And he says vaguely, I do know that it's extremely rare. And I said, It is. Uh, and he said, Let's not get ahead of ourselves. I'll refer you to gynecology and rule out PCOS and we'll go from there. And lo and behold, of course, I then get you know a load of tests very quickly, being private healthcare, and uh lo and behold, I did have PCOS. But what's PCOS?
SPEAKER_00:Sorry.
SPEAKER_01:It's uh sorry, polycystic ovary syndrome. Okay, yeah. Polycystic ovary syndrome, and it means that you have a bunch of cysts on your ovaries that um then affect your hormones and uh create kind of androgens, i.e. male um hormones and hence the hair growth. It explained a lot about the oily skin and the spots and the sweating and etc. etc. But it did not explain the growing hands and feet. Uh, hence why they had to, they were forced to refer me to endocrinology to rule out Acromegaly.
SPEAKER_00:Okay.
SPEAKER_01:Um at this point I had obviously done a lot of Googling, uh, gone to Dr. Google, and the alarm bells rang very loud, and I but I was there was a part of me that went, no, this is like me and my friend winning the lottery in the same week. It statistically speaking, it can't happen. It can't happen. And then uh the my tests came back and they they obviously had to send me for an MRI. Uh, and the um when the results were ready, they asked me to come in to the hospital to discuss them. And I knew at that point, okay, if everything was fine, they'd sent me a letter. And so I took this friend with me for moral support because she was very well informed about hormones in general. So I took her along and uh, and they both my uh gynecologist and endocrinologist were in the same room, and they both said, Oh, hi, um, have you brought a relative or a sister? And I went, No, no, no, this is a close friend of mine, she's like the hormone expert. And they said, Oh, really? Are you a doctor or a nurse? And she said, No, no, no. Um, I I just know a lot about hormones from having had cushions. And there was this kind of lull and silence in the room, and they said, Hang on a minute, you you had cushions? Yeah, three years ago. And you both know each other. Yeah, we've known we've been friends for a long, long time. And they both kind of looked at each other and went, right. And she said the endo said, uh, before we discuss your results, can you just do me a quick favor and show me a photo of yourself from one or two years ago? And that's when I knew.
SPEAKER_00:You knew, you knew.
SPEAKER_01:I knew, yeah, because I'd been looking at photos of myself, myself, going, the person I see in the mirror doesn't look like the person I remember being. And that's when I knew, and then she said, Yeah, that just that photo alone can would confirm it, but your tests, your IGF one also confirms it, you have acromegaly. And then that's when I obviously the room, the sounds far away. I just I just remember squeezing my friend's hand for her to take over because your mind's blown. And we went for a drink afterwards, and I balled it. I cried because I not because I had acromegaly, because it was a relief to finally know what it was and to be validated and to be heard and whatnot. It I cried because I knew what the worst case scenario looked like with my friend. Okay, I knew what could go wrong, and I was scared that the same would happen to me. And she knew this and she said, Don't. I know exactly what you're doing, you're catastrophizing, you're thinking that what's happened to me is going to happen to you. It won't, it might, but it it's very unlikely. I was just really unlucky, and so we drank, I cried, and then I very quickly got over it and just felt relief after that. I was actually quite excited to just crack on. And uh, and of course, the first line of treatment is surgery. And because I had private health care, I had the the privilege of being able to choose uh my surgeon, choose where I could have it, how quickly I could have it. They said, this weekend if you want to, and I'm like, oh my god. It's a bit sudden, it's very sudden. And I said, I actually have a half marathon to run in Lisbon next next month. Can I? Can we wait? And they said, Hey, we can wait. Um, no problem.
SPEAKER_00:So they so they obviously didn't consider it, you know, uh, did how big was the tumour then?
SPEAKER_01:It was, they told me at the time it was a macro tumour because it was uh uh one and a half centimetres in diameter in total. Um but they I remember them saying it's what we like to call an attractive target. And I remember thinking, wow, that's probably the only attractive thing uh about me at this moment. Um so they said you are ripe for a hopefully textbook surgery because it's in a really good position, it's not wrapping around the carotid artery, it's not wrapping around optic nerves.
SPEAKER_00:Okay.
SPEAKER_01:Um, and we hope that it should achieve remission. Uh but they did, in fairness, and this was all in London, sorry, by the way, at King's Hospital. Okay, because I uh lived there at the time, and they did warn me with cases of macro tumours uh that the level of recurrence is quite high. So even if the surgery is deemed successful, there is still a chance that it could grow back. So it was a textbook surgery, like I had never had an operation before ever in my life. Um, so it was all very new to me. And I actually look back fondly with about it. It was, I do remember the pain, of course, of waking up in in ICU. Um, I was at the Harley Street Clinic, I was incredibly uh, I felt just very privileged to even be there. It was like a hotel, and it's true about what they say. And but I was guaranteed that just the surgery would be at Harley Street, but I would still be treated like on the NHS, it would be the same surgeon, same specialist, just in a different location, just to be able to jump the queue. Um, and it was brilliant. Um, and I didn't have any complications, no CSF leak, no diabetes insipidus. It was textbook. So I was very lucky, and they did end up taking some muscle from my leg. I hear a lot about people having their uh fat from their tummy, whereas I had um deep muscle taken from my thigh, yeah, from the side of my thigh.
SPEAKER_00:Um to plug the to plug the hole. Yeah, I had the same.
SPEAKER_01:Yes, to plug the hole, and that was what hurt most when I woke up was my leg because it's so deep.
SPEAKER_00:Yeah.
SPEAKER_01:Um, so it in in that way, I took the maximum amount of time I could take uh of paid leave from work because my surgeon said, literally milk them. You're never this is big surgery. Yeah, even if you think you need less, take it all. Yeah, because it's you need to recover, it's a huge shock to the system. Huge. And actually, now when I think back, I could have so taken more if I if if if it were paid. Um, but I took uh I think it was nine weeks in the end, and I still felt wobbly going back into the commute, and I had a gradual return to work. Um, and work were brilliant, but uh a year later, well, surgery alone did not get my my GF1 levels within range. So even though, yes, there was a drastic uh reduction, but never within range. And until today, I am a bit of an anomaly case. I am what they call a low-grade but persistent case of acromegaly. So my IGF-1 levels are have remained and hovered above the upper limit of what is deemed safe for a female of my age. So for the majority of my 30s, they were quite happy to not medicate because it was hovering just above the upper limit. They did octyatide did not work prior to surgery. I forgot to say medication-wise, they it made zero difference. Right. Um, after surgery, they did ask me, would we would like to trial cabergoline? Um, but having read what I had about the somewhat uh not so great results with acromegaly, with cabergalin, uh, because mine wasn't a prolactin secreting tumour, it was purely growth hormone secreting. Okay. I knew that perhaps it wasn't great, and the side effects were quite dark in nature, and I was very reluctant to go down that route, not shaming anyone who is on it. Um and I'm having to take it anyway. So give my third, they were very willing to not medicate me throughout my 30s, but they did say once you hit your 40s, we will need to force you to take something, and hence, lo and behold, now I have um I am being forced to because uh I then since moved to the Cotswolds and uh I had to change um endocrinologist.
SPEAKER_00:Okay.
SPEAKER_01:Not that I had to, I would have been happy to continue going into London, but um COVID came along and pituitary units were shut down essentially because we're not critical. Yeah. And uh so I this new doctor wanted to start from scratch and do all his own testing again, all his own imaging, and uh he said, I want to I want you to go to Cambridge to do this special scan, the CT PET scan, and I did and had another contrast MRI there, um, and bloods, and weirdly, my IGF 1 at their lab was deemed within limit within normal limits. So my I was ecstatic. I was like, yeah, I've never had a normal result ever in my life since diagnosis. Um, however, uh Oxford Hospital were not were not convinced, and they only trust. I've since realized that hospitals only trust their own labs and they each have different ranges. Right. And so I did a repeat um blood test at Oxford and still I remain slightly above what they deem normal limit. So they are they are saying that my they've had their MDT meeting uh to discuss my scan, and they can't confidently say there is a viable target for a second surgery, and so they're forcing me to take gaberglin as a as a a next step. So that's where I am now. I haven't started it yet. I'm picking up the prescription today.
SPEAKER_00:Wow, today, well, what a day to pick your to pick your day to do macro tails. Uh I mean it's quite a remarkable story, Chrissy. It is. And when you really think about you know the rarity of you having it and then your best friend having a not the same but a similar paturatory condition. I mean, it's just that's just mind-blowing.
SPEAKER_01:Yeah.
SPEAKER_00:I just want to just take a step back. Um when you were when you discovered this news, how how did your family respond, or how did you get around telling your family? Because that's often one of the hardest things to deal with.
SPEAKER_01:The hardest, really, really hard. Um, so I have quite a small family, um, and my dad obviously lives back in Portugal, and I uh hadn't really needed to tell him much about um kind of all the investigations that I'd had um with all the random symptoms, so I knew it would be a bit of a shock to him. Yeah, so I knew I had to word it carefully, uh, with the added um with the added concern that uh I well he had lost his wife, my mum, very young as well. So I lost my mum when I was 23, she was 46. Wow, he would have been 47, and I knew that that would be an added worry for him. So I had to kind of just word it in a way in layman's terms, uh, and just uh reiterate and reinforce that it's not malignant.
SPEAKER_00:Yes.
SPEAKER_01:Uh it's important to kind of say, and uh the reassurance that you know that uh I'd had a friend to spot it. We I'd like to say early, but that's hard to say because Acromegaly is, as you know, it's a slow burner. A slow burner. Um, but that I was in good hands and that I had private health care and that I would be in the best of hands regardless. Um and so yeah, he was he was concerned, but reassured maybe. Reassured. I'd I'd kind of yeah, deliberated and obviously having had the results at Christmas as well, and having to tell him over Christmas was hard. Um, and then I had my surgery in March. Yes, exactly. So uh sorry, go ahead. So yeah.
SPEAKER_00:You so you had so you got on in December and then you had the surgery in March once you've done your half marathon.
SPEAKER_01:Yeah, because I yeah, I'd been training for this marathon, and I'm like, I'm I'm yeah. Well I I asked them, I said, look, it's not it, it's I'm not at death's door, am I?
SPEAKER_00:So I think that's a really but I think that's a really important thing, is you know, like you, some people are this is the first time they've ever been ill or ever been diagnosed with anything. And actually the fact that for a few months you could still live your life, it wasn't right, we've got to rush her into hospital, we've got to do this treatment, you could still carry on with your life. Um, yeah. And I and I think I think those who are recently diagnosed, if anyone is listening back to this, it's really and unless you have a exceptionally large tumour that's resting on your tumor that's resting on the eye uh optic nerves, yeah, definitely. And and there and there's real risk to life.
SPEAKER_01:Yeah.
SPEAKER_00:Actually, because I see a lot of people online going, I've I've been postponed again. And it's like, I appreciate that's frustrating. Yeah. But but uh, you know, consider the fact that if you were absolute risk, that would be far more dangerous. So it's an odd thing to wrap your head around, but it's it's an important thing to get your head around, I suppose.
SPEAKER_01:Yeah, because it is such a slow burner, it's very rare that it's very aggressive.
SPEAKER_00:Yeah.
SPEAKER_01:Um I do know of someone else, weirdly in my circle, in my network, I know another lady who had who has a has a very aggressive uh pituitary tumor. And that's another whole other story, but she um yeah, but often with acromegaly, it's a slow burnout of an illness, and so therefore there is no sense of urgency unless your optic nerves are being impaired or it's very, very close to the carotid artery and you're at risk somehow.
SPEAKER_00:But um and you you said that you um, you know, as everybody does, Dr. Google sort of came to the rescue or you know, was a source of information. Did you did you uh you utilize social media as well? Did you join the UK Facebook group or the or the Acromegaly community?
SPEAKER_01:I did. And m my friend, my good friend, she uh advised me to go onto the Petrutri Foundation website first.
SPEAKER_00:Yes, okay.
SPEAKER_01:To not just punch it into Google, yeah. To just go onto the Petrutri Foundation, read all their uh all their guides and everything, and um, and then she I can't remember if she did mention at the time the Facebook group. I think I I either searched for it myself or I'd heard of it on somewhere on the Petrutri Foundation website, but I did find it and it was, and that is where you uh feel really, really validated. Um, and you feel like you're getting the the real deal of what you're up against because you're you're dealing with first hand experiences um from people who are living and breathing it and uh and come through it. You yes, and also that um every case is very, very individual.
SPEAKER_00:Yeah.
SPEAKER_01:That you know, again, like with my friend, her case is very unique to her um and not necessarily gonna happen to you. So yeah, definitely uh, and that's where I found you in the Facebook group.
SPEAKER_00:Yes, lucky you and and um so 10 years on, I mean, obviously it's had an impact on your life, but has it stopped you living?
SPEAKER_01:No, in fact, more. Um it I was like I said, I was in a corporate job at the time, and those nine weeks off work when you have to relearn how to walk and relearn how to pee and re-relearn how to just do normal things. Um I had a lot of time on my hands to really gain perspective about my life and how and my lifestyle and things that affect my health, uh, physical health and mental health and all those things. And actually just learning about macromegaly made me learn about the body and how it works, and um it really gave me a lot of time to think about okay, am I ready? A am I ready to go back to corporate life? Can my body actually cope with it? And it was then that um when I on my phase return to work that I stumbled upon reflexology, which is a holistic therapy, it was offered at my offices. I was again very fortunate to have that on site because the fatigue that came, um it was I actually discovered it prior to uh surgery. So when I was in the peak of of like the the illness, uh I was having to I was having to have loo breaks um to get some shut eye. I used to have to lie on the floor in the toilets because it was the only room that had uh that where you could switch the light off. Wow. And I would have 10 hours 10 minutes of shut eye so that I could pretend to then sit back at my desk and do work because of the fatigue that came with it and the migraines and just everything. And I knew that uh in case surgery didn't kind of resolve that, was I able to keep doing that job? And it was then that I found reflexology and it was the one thing that gave me so much relief. Just for me personally, it was it was so key for my recovery, and I recovered far longer, and actually, it was the only thing I did religiously for the for the years after, and anyway, it made me want to retrain. It made me really think about do I want to stick around in this uh corporate rat race? And um months a year later, I had quit my job and I had retrained, and I am now have been a fully fledged reflexologist for five years now with my own business, so it's it's all it's been great. Like it I don't resent having had acromegaly. I wouldn't wish it upon anyone, but it has definitely um given me perspective and resilience and knowledge to learn about the body and how amazingly well it copes. So um yeah.
SPEAKER_00:I I absolutely love that, and and it's absolutely making the most of a bad situation, isn't it? And and every cloud, every cloud, and and just seeing I I remember I was teaching at the time, and I after my surgery, I went, I just can't teach anymore. I just I just don't want to do it, and it really just helps you reassess what's important, yeah. Um I think that's I think that's just absolutely fascinating. And uh for those that are listening to this, um, who maybe they've been recently diagnosed, what would be your pieces of advice? I mean, I think your whole last 25 minutes has given some absolutely wonderful advice, but it what would be more your nuggets that you would you would say to somebody?
SPEAKER_01:Um I would say it depends on the type of person you are. Because advice has to be, you have to know your audience. So I I but general advice I always say knowledge is power. Some people say there's there is such a thing as knowing too much, that if you read too much about Ecromegaly, you'll just get scared or you'll but I believe that if you can learn as much about the body, but your body most importantly, because we're all very different, but just empowering yourself and knowing what uh energizes you and what depletes you, and you know, um but in terms of an Acromegaly diagnosis, definitely, definitely don't choose your sources when when looking uh into knowing about Acromegaly, and definitely, definitely join uh the a Facebook support group. Your network, your people are the people that fully understand what you're going through, and that is a huge comfort, um, particularly in the early days. But I'm still on it even 10, 11 years later, and I'm still there offering some level of comfort, but it is always very individual, it's never generalized advice. You have to kind of um you know measure your response sometimes because people have such high expectations, or or you know, especially in the beginning when you know. Nothing. People can cling on to words, but it most of the time it's always going to be okay, most of the time. And if you're as scary as they are.
SPEAKER_00:Yeah. And have you of your f you and your friend thought about doing a uh maybe a double act, like I don't know, or a pituitary podcast or a bad guy we should, shouldn't we?
SPEAKER_01:We should. I mean, she lives all the way in North Yorkshire, so we don't see each other very often these days.
SPEAKER_00:But um Yeah, or at least play the lottery once a week. I mean, you should be picking three.
SPEAKER_01:I know, we did we did think about buying lottery tickets that month. Yeah, no, it sadly hasn't hasn't transpired.
SPEAKER_00:Well, look, Chrissy, uh, I have to say it's been just absolutely fascinating, and um and I think you're a real uh I wasn't gonna say beacon of hope, but I think that's slightly cheesy. Oh wow. I was just gonna say that I I just think your your your attitude towards the whole thing is is is really inspiring and will be to a lot of people. And I hope so. Yeah, and just make the most of the hand you're dealt. I mean, that is definitely don't let it define you, don't let it earn you. Uh and uh yeah, just make the most of it.
SPEAKER_01:Exactly. Couldn't agree more.
SPEAKER_00:Awesome. Well, look, Chrissy, thank you so much. Um Thank you.
SPEAKER_01:Thanks, Dan.
SPEAKER_00:Uh if you found Chrissy's story interesting, and how could you not, and you want to hear other Acrotales, then head over to Acrotales.com where you can find the ever-expanding library of interviews. And of course, you should just subscribe to the podcast to receive the latest updates via iTunes or Spotify or wherever you get your podcasts. Thank you so much. Thank you so much once again to Chrissy. Thank you for listening, and we'll see you next time for another Acrotale.