AcroTales
AcroTales
Episode 14 - Phil
In Episode 14 of AcroTales we speak to Phil from Southampton in the UK. Phil was diagnosed on April 1st 2010 (no joke!) and tells the story of his long road to diagnosis, the impact it has had on his life but also how it has motivated him to help others who have recently been diagnosed with Acromegaly.
Hello and welcome to AcroTales, a podcast that explores the fascinating world of acromegaly. Acromegaly is a rare condition caused by a benign tumour in the pituitary gland causing an excessive release of growth hormones. My name's Dan Jeffries, and I was diagnosed with Acromegaly in 2007. 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 14, and I am really pleased to welcome Phil from Southampton in the UK. Phil is 58 and was diagnosed with Acromegaly on April the 1st, 2010. Obviously, not a joke. Phil, welcome to AcroTales. Hi, Dan. How are you doing? I'm good, thank you very much. Good. Well, thank you for joining us. Um so tell us about how you were initially diagnosed. How what what were you noticing in the early days and how did you end up with your diagnosis?
SPEAKER_03:I think it it all started uh around uh year 2000. I I was uh diagnosed with carpal tunnel syndrome and uh shortly after that I'd noticed other things, osteoarthritis. But it was generally two years before my diagnosis that it all started really going wrong. Right. What what were you noticing? Uh the fingers swelling up, I had my wedding ring uh cut off twice, feet were starting to grow, right, headaches.
unknown:Okay.
SPEAKER_03:Visual any visual loss or yeah, uh double vision when I was uh I was getting more and more fatigued, and then double vision would kick in.
SPEAKER_02:Okay. And and did you notice the change in appearance or did your family notice the change in appearance?
SPEAKER_03:No. No. My my wife is still eternally guilty of this. She's she she's really beat herself up over it. But where it was such a gradual.
SPEAKER_02:Yeah, I mean, it when you look back, and um I'm sure you'll share some photos with us that uh listeners can look at on the Acrotales website. Yeah, when you look back and you see that change of say, let's say 2004, then 2005 and 2010, you and you see that sort of you know big gaps in time, uh, you really do notice the difference, don't you? But I think when when you live with someone, uh you you don't you're not going to notice that very subtle change. No, no, yeah. It's it it's an odd one. And and you know, I I I think anyone that's listening that's gone through that uh as a partner or a friend should never feel guilty about it. Because if we don't notice it, you know, why would anyone else you suppose?
SPEAKER_03:Yeah, because uh I I must admit myself a couple of years before I was actually diagnosed, I become very camera shy. Yes, which was basically down to my skin condition at the time. I'd started getting teenage acne in my mid-40s, and it was That's definitely a hormonal sign, isn't it?
SPEAKER_02:I think. Yes. And had your jaw changed shape in any way? Had had um you know, teeth can often be a big indicator that something's wrong.
SPEAKER_03:So I've I've got uh an underbite, which uh my dentist said was through putting a pen in my mouth when I was a youngster.
SPEAKER_02:Really? Yes. So isn't it amazing? We've said this before, isn't it amazing how dent a dentist could look at that and think, no, let's not assume it's a pen. You know, let's let's investigate this further. And I and I really think dentists can play a huge role in uh early diagnosis of acromegaly. Yes. Um okay, so you're noticing all these changes. Uh what was it then that actually got you to that diagnosis?
SPEAKER_03:I woke up one morning and I couldn't walk on my left foot. I just had this it was like a sprain. Oh yeah. And after a couple of weeks, uh I went to the doctors and they sent me for an x-ray, but the x-ray was clear and there was no yeah, no broken bones or nothing, but this went on for months and I kept going back to the doctors and then I was sent to various departments at the hospital and at the same time uh I had carpal tunnel in my other hand which uh that was getting progressively worse. And uh the headaches double vision was getting worse. Okay. Yeah, I went to see uh optician who he then asked me how long had I had a squint in my eye, which I I I hadn't had a squint at the last eye test. Right. So they didn't didn't click on.
SPEAKER_02:Right.
SPEAKER_03:Yeah, quite a long journey then. Yeah. And I was visiting the doctors quite regular because I knew something was wrong. I I I knew something was seriously wrong. And I had a locum doctor at the time that she basically said she didn't know where to go.
SPEAKER_01:Right.
SPEAKER_03:Uh I don't know where to take this. I completely lost. And looking back in hindsight, I think she had me down as uh HC hypochondriac. Really?
SPEAKER_02:Yeah. Wow. That m that must be quite demoralizing if that's what you're thinking.
SPEAKER_03:It was, and at the time I was uh so down, and I I think it was my wife that really pushed me to keep going. Because I was at the stage of just giving up giving up, yeah.
SPEAKER_02:Okay, so what what how did you finally get there?
SPEAKER_03:It was at that meeting when she said we don't know where to go with this. Uh I I basically said, Look, there's something wrong, I and I need to find out. And she said, We'll we'll try a rheumatologist. So I had an appointment with a rheumatologist that within seconds of she just looked me up and down and went, right, have your feet grown, let's have a look at your hands. She didn't bother to check my bad ankle. It was right, yeah. She just looked me up and down and she said, You're in the wrong department. I'm gonna get you an emergency appointment. Just go home. With endocrinology, I presume. Yeah, with endocrinology. Go go home. Don't think about anything.
SPEAKER_01:Um that's the worst thing.
SPEAKER_03:God. But she she she didn't eat she didn't mention acronymegaly. She just said, I think I know what's wrong, and that was it. And within a week I had an appointment with an endocrinologist that just uh looked me up and down, yeah, again, tell me your story. I told her what was going on, list of symptoms, and she said, um 99.9% sure you've got acromegaly. And she said, I'm gonna book you in for an MRI, and but she said, I'm as certain as certain can be, this is what you've got. And that was April the first, 2010. And I'd say a good ten years of being symptomatic.
SPEAKER_02:So that really must have been quite a relief then when you were fighting you finally had a name for your diagnosis.
SPEAKER_03:Yes, it was I actually come out of the hospital fist pumping. Yeah, I'd got a diagnosis. I was I was right, I was ill, but and by the time I'd left and phoned my wife to say what was wrong, I'd actually forgotten the word acronegal. I was stumbling, uh mumbling some acro something.
SPEAKER_01:Yes.
SPEAKER_03:And my wife was straight on Google, was it acronegaly? I said, Yep, that's it.
SPEAKER_02:It's amazing, isn't it? Because when you're when you're fed all of this information, it's so much to take on board that it's it's just very easy to forget, you know, even the name of the condition that you've been diagnosed with. And I and and you know, I think that's why it I it's always a good idea to go with someone if you can, because they're gonna be listening and not not not having to take on board all of the sort of emotional impact of it quite as much. Um, but yeah, okay. Well that's that's really is quite a lengthy diagnostic odyssey as as it's known, and uh I'm very glad that you finally got there. So did they I guess the next step was growth hormone uh and IGF one tests and things like that?
SPEAKER_03:Yes, yeah, I had uh IGF one test and my growth hormone at the time was uh 1536. Well it should have been just over 300, 340, I think it was at the time, should have been my target.
SPEAKER_02:Right, so you're five times the usual standard uh sort of levels of growth hormone. Wow, okay. And and uh I guess they do as usual an MRI scan to check the size of your uh tumor.
SPEAKER_03:Did they tell you if it was yeah, they told me what size it was? Macro. They didn't give me the exact, it was about uh I think they said 12, 12 mil.
SPEAKER_02:Okay, okay, so um not the biggest, but no uh because I thought micro was between one and two centimetres, and then macro was two centimetres and bigger.
SPEAKER_03:So yeah, do you know what? I don't actually know the size.
SPEAKER_02:No, it's interesting. I think that's something that uh maybe now compared to ten years ago, yeah, you would you probably would be told that. Um, I don't think I was particularly told the size, only on the day of operation when I asked, they said about seven millimetres. Um okay, and I guess they got you in quite quickly uh for your treatment.
SPEAKER_03:Uh yes. Uh I started uh some daily in daily injections pretty much straight away. Uh they started me on uh octriotide.
SPEAKER_02:Uh and that's to suppress the tree, isn't it? To calm it down a bit.
SPEAKER_03:Calm it down before surgery, and actually that got my growth hormone down uh IgF 1 down to it was about 800 before surgery.
SPEAKER_02:Just on that's that's quite that's a real improvement, actually.
SPEAKER_03:Yes, and it actually it was uh I felt better in myself in a very short period just before surgery.
SPEAKER_02:Wow, that that's that's quite an amazing thing. And and then they would have and then they I suppose they'd elected to do the transphenoidal surgery um of the nose. Is that their plan?
SPEAKER_03:Yeah.
SPEAKER_02:Okay. And how how soon did you have that after being diagnosed?
SPEAKER_03:Uh the surgery was uh uh planned for August after April the first, so four months or so.
SPEAKER_02:Yes. All right, that's pretty good. And so you uh admitted of a surgery and did it all go smoothly?
SPEAKER_03:Did you uh no, not the first time it was cancelled. Ah, okay. Which was frustrating at the time, but when they give you the reasons, you can understand why.
SPEAKER_02:Yes. I yes, I had cancelled uh appointments as well, and you know, you're expecting to go in on a date and then they say, Well, I'm really sorry, we've got no beds. Yeah, for God's sake, I've built myself up for this. Yeah, but then you but then you find out why there are no beds, and you're like, okay.
SPEAKER_03:Yeah, because this could be worse. Yeah, it could have been worse. Uh my surgeon just came in and said, I'm I'm very sorry, we've got no no high dependency beds. I'm not willing to do this operation if you can't get treatment afterwards.
SPEAKER_02:So okay, so you finally got in in September.
unknown:Yeah.
SPEAKER_02:Okay. And was the procedure smooth?
SPEAKER_03:Yes.
SPEAKER_02:Okay. And did they get all of it?
SPEAKER_03:90%.
SPEAKER_02:Okay, so a bit of residual tumour left over. Yeah. And how how did you were you in hospital for long? Did you uh uh uh after and did you have anything like CSF leaks or any complications like that?
SPEAKER_03:No, it all went very smooth, and I was in for three days.
SPEAKER_02:Wow. That's fantastic.
SPEAKER_03:Yeah.
SPEAKER_02:Uh and it's amazing, isn't it, that you know, when you think about it, ten years to get to that point and three days to fix it.
SPEAKER_03:Yes, it was yeah.
SPEAKER_02:And and how and how did you feel when you when you got out of hospital? Did you start to notice changes quickly or did it take a bit of time?
SPEAKER_03:It was uh instant, basically. You could uh my my hand fingers uh uh shrunk back, uh my skin was not so oily. I didn't yeah, it my facial features were practically instant. Wow. Yeah. The puffiness around my eyes disappeared. It was yeah, it's amazing.
SPEAKER_02:It's amazing, isn't it? It's it's uh I had a similar experience where you know you I sort of wake up in my bed would be soaked with kind of all of this excessive fluid that built up in the body, you know, over the years and it sort of drains out of you. And you really do notice a daily change in your in your face and your hands and your feet. It's it's quite incredible, really. Okay, so uh we're 10 years on, uh, and um I'm assuming are you still on some medication to manage that sort of last 10% or lead three?
SPEAKER_03:Yes. Uh I'm on octetide at the moment, uh a four-weekly injection, 30 mil.
SPEAKER_02:Okay. And is that that's not self-administered, that's a nurse, I presume, is it?
SPEAKER_03:Yeah, yeah, it's nurse administered uh a home visit every four weeks.
SPEAKER_02:Okay. But how has life been, say, you know, since that uh 2010 surgery? Uh you know, ha you I'm assuming you've had no return of symptoms or uh no sort of secondary tumour growth or anything like that. Has has life generally been normal? I guess is the question.
SPEAKER_03:Yeah, at the moment it's great. I'd say the last few years, uh the last four for four years of probably I've been the fittest I've been for years, but I had uh what I'd say uh an up and down couple of years post-surgery where it was just getting my medication right. Uh yeah, I was on uh lanriotide and I just couldn't get on with it. And in in what way? Side effects, side effects, and I'm on the same dose of octriatide as lanreatide, but the lanriotide didn't bring my uh numbers into range, right?
SPEAKER_02:Okay, but the oxyatide has. Yeah, and I think there is that bit of experimentation isn't there with just finding the right dosage, the what meds work best for you. Um, and I appreciate that's probably frustrating, but I think when you get there, yeah, life returns to a degree of normality, doesn't it? Yes, and I and I know you love going gigging and uh you know going to live events with Tracy, so it really must have given you that energy back and that desire to want to live again and and do things.
SPEAKER_03:Yes, and uh it it's hard to put into words, but before diagnosis, it's you you're going through, you know, you know something's wrong, but it's it's it's just you get up and go, disappears, everything, things that you normally like, you you just can't be bothered to do. And post surgery, it's just you've got your life back. It's yeah.
SPEAKER_02:I I always said it's like a plug being lifted off your soul, and that you you know, all of this crap runs down the drain, and suddenly you know you're you're back to sort of some degree of where you were again, and and you can start to enjoy life a bit more again and have that energy and that get up and go.
SPEAKER_01:And yeah.
SPEAKER_02:And I think that's a really important message as well to anyone listening, uh, that maybe has been recently diagnosed and they can't see what the future might hold. I think for a large percentage of people diagnosed with acromegoly, there is that light at the end of the tunnel, and there is that return to a degree of normality and having your life back as it once was. What would your advice be to anyone uh you know that has been recently diagnosed?
SPEAKER_03:I think uh the best advice I could give is stick with it, get help from your family, make sure your your partner understands what's going on, that what you're going through, because the support you get from your family is absolutely amazing. You yeah, you you do, but don't give up. Try and oh okay, I'm struggling to put it into words here, but I think we get the emotion of it, and it's yeah, you're right, it's don't give up, isn't it?
SPEAKER_02:Don't be beaten by it.
SPEAKER_03:Don't let this disease define your life. It's you you the real you is still there, and it will come out again. Keep all it. That's brilliant. And I was gonna say another little tip is through Acromegaly support, you you you will get close to a few people and sort of try and buddy up with someone on here and get other people's stories.
SPEAKER_02:Yeah, I mean, I was gonna ask that. Did you utilize support uh or social media in 2010? I guess that I don't know if there were groups or forums around. Uh you know, how how did you find the help of others?
SPEAKER_03:Uh well, my specialist in endocrine nurse at the time when I was uh diagnosed, uh, she probably gave me the best advice I've ever had and the worst advice. I'll I'll start with the best advice. She said, always keep a holiday booked, always book, even if it's a date night with your wife, put something in your diary that you've got something to look forward to. Okay, and yeah, it was. Um I've stuck to that all the way through. When I come off holiday, we always book the next, we always have something to look forward to. The worst advice, she said, stay away from the internet and chat rooms, don't talk to anyone else, it's only doom and gloom. And I took that advice for about two years. And it's no, it was terrible because I really needed to talk to people and talk to people who have been through this.
SPEAKER_02:And do you now find that now you have been through it that you become the advocate and you become the one that that can share advice and guidance uh when you're not seeking it so much anymore? Yes, and there's a great sense of reward in that, isn't there?
SPEAKER_03:Oh, it's yes, yeah, it's it's great to to pass on your experiences, so you know at the time I found Acromegaly support, it was you know, it was such a relief for me to actually speak to someone.
SPEAKER_01:Yes.
SPEAKER_02:Yep, I I I I think that's essential for anyone listening. Again, if you've just been diagnosed, don't be afraid to talk to others. Get the whilst your specialists and your uh consultants will give you medical advice, they can't necessarily tell you what it's like to live with the condition and all of those things that go with it. So I think talking to people is is really powerful. Uh and and this is exactly why I launched AcroTales to give people that resource that they can access these patient stories and hear the raw, you know, rough and ready uh uh uh approaches to how we uh how we cope with these things.
SPEAKER_03:Yeah, it's speaking speaking to fellow across is is is a way forward. And if you can get to any meetings, go. There are there's local uh pituitary foundation meetings all over the country. We have we have a local one on the only acromagallic that goes, but yeah, you'll find that. Yeah, yeah. You'll sit in with plenty of cushions, patience, and yes, okay.
SPEAKER_02:Well, Phil, I I think it's been absolutely fantastic talking to you. And uh um, you know, as with all stories, uh an inspiration to others that you can cope with this and you can you can get through it. So um I I just want to say thank you very much for sharing your story.
SPEAKER_03:Thanks for having me, Dan. It's been a pleasure.
SPEAKER_02:No, thank you. And if you found Phil's story interesting and want to hear other Acrotales, head over to Acrotales.com where you can find the ever-expanding library of interviews. And of course, you can subscribe to the podcasts to receive the latest updates from iTunes, Spotify, and so on. So I just want to say one last time a big thank you to Phil, and we'll see you next time for another Acrotale.