AcroTales
AcroTales
Episode 25 - Sam
In Episode 25 of AcroTales we meet Sam, who is from Lincolnshire in the UK.
Sam's story is one that shows how quickly pituitary conditions can develop and the sharp impact they have on our health. Within two years Sam has discovered a range of pituitary issues, not helped by the battle he has had to face with the healthcare system to get the tests and support he needs. Combine that with a job where literally millions of pounds are at stake should 'brain fog' kick in, and you have a truly fascinating AcroTale.
Hello and welcome to AcroTales, a podcast that explores the fascinating world of Acromegaly. My name's Dan Jeffries, and I was diagnosed with Acromegaly in 2007. And 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 25, and I'm really pleased to welcome Sam from Lincolnshire in the UK. Sam is 36 and was diagnosed in 2023. Sam, welcome. Thank you very much. So, Sam, recently diagnosed, 2023, that's only a couple of years ago. How uh how did you find out you had acromegulae?
SPEAKER_01:Uh so I woke up one morning, um, had a huge headache, like nine out of ten headache. Um, was sick a couple of times. Um after the second time, I looked in the mirror and my eyes had filled up with blood. Um my gosh. Yeah, yeah, it was it was pretty bad. Um my wife said, We better go off to the hospital then, which I said, no, no, let's let's see what happens. Let's give it a couple of days. Um, and eventually we did go off to the hospital, had a CT scan, and um, yeah, doctor came in and said, You haven't had a mini stroke, which is what we were looking for, so that's good. But uh, we have found a little mass in your brain. I was like, Oh, okay, cool. Um, yeah, and it it kind of went from there, basically.
SPEAKER_02:And they and they immediately said, Well, I I guess you went and saw an endocrinologist and they said it's acromegaly. Was it that that quick? No.
SPEAKER_01:So um where I live, the hospitals are small. Um, they don't see a lot of people like us. Um so I went to see the endocrinologist there. Uh, he was very interested in me because I didn't acromegal didn't come up for quite some time. Um, but he I was the first, it transpired. I was the first person with acro that he'd ever seen, um, which is not exactly inspiring, obviously. Um, and yeah, there was a lot of back and forth. I um I'm lucky enough that I have private medical um and went to see a private hospital or see a rather surgeon. Um and I walked into the room and I was dripping with sweat and size 14 shoes at this point, uh, very swollen. And he said, To me, you look like Joacramegalek. And like most people, I went, sorry? What? Yeah. Um and I mean, call me cynical. I got a call from my specialist, or sorry, from my endophonologist, about three hours later saying, Oh, you might have acrobegaly. Um maybe we should do an OGT to to rule it out. Oh, okay, okay, yeah, it's a good idea. Yeah, I th I've I've heard I might have acromegaly.
SPEAKER_00:Oh right, yeah, yeah, yeah.
SPEAKER_01:So Yeah. And next thing, obviously, OGT comes back as um well, comes back as you don't want it.
SPEAKER_00:Yeah.
SPEAKER_01:Um, and got referred then to the local um major hospital, um, which I don't want to name because I didn't end up having my treatment there. Um basically I was put on to um octriotybe. Right. Um, which immediately made me feel a hundred times better, obviously. Okay. Um I was also having the LAR um obviously once a month. Um and met the surgeon there.
SPEAKER_02:This was pre pre-surgery. Yeah, yeah, yeah. This is pre-surgery. Okay, yeah. So pre-surgery, they put you straight onto some medication. Yes. Yeah. Did they tell you how they give you any indication as to the size of the tumour?
SPEAKER_01:Yeah, so it was uh pretty much 20 mil all the way around. 19 by 20 by 21. It transpired as well. It was triple hormone secreting, which I understand is quite rare. So it was it was uh yeah, growth hormone, prolactin, and thyroid, um, which yeah, so I understand is pretty rare. But my jackpot. Yeah, very much so, yeah. My uh my growth hormone was in the 500s when it was found, um, which again I think is is pretty significant. Okay.
SPEAKER_02:Um so you you uh you were put on the medication to obviously help treat and manage the tumour. So the next step was surgery, I presume.
SPEAKER_01:Yeah, so as I say, the hospital I was with, um I I I wasn't happy there, basically. Um as I say, I was using my my private health kind of simultaneously. Um and the private endocrinologist that I ended up seeing um did a metanephrine test, urinary metanephrine test. And that came back as I mean, it was astronomical. I think it was in the 5000s, and and she literally rang me and said, if they call you in for surgery, do not let them take you down. Um, because you could be in real trouble. Um like it apparently it does something with your blood pressure, where when you have the anesthetic, your blood pressure then bottoms out, and then they do stuff to bring your blood pressure back up, and then your blood pressure bounces back naturally, and then you have a heart attack. And so she was very much like, do not do not go for surgery, phone and ask them for a plasma metanephrine test. Um, because you might have a paragangliona. Right. Which, of course, then me and my wife, Dr. Google, came out, obviously. Um, and it's it's a tumor on on your nerves, I think it was. So I ended up going back to my NHS um endocrinologist and saying, right, I've been told I need to have this plasma metinephrine test, which for some reason they just would not do. I have no idea why.
SPEAKER_00:What?
SPEAKER_01:Um and I asked for it so many times, it was it was ridiculous. Um, but they did a nuclear uh nuclear scan instead, um, which is a full-body CT scan with radioactive tracer, which uh I think gives four years worth of background radiation in one hit, which is you know pretty scary stuff, uh, rather than just doing this simple blood test. Um so that I say, I wasn't keen on staying with them, shall we say. So I went back to my GP and said, look, the other, the closest centre of excellence, other than this one, is Adam Brookes, which is like it's an hour and a half to two hours drive from me, but I'll do it. That's fine. Um I walked in to Adam Brooks, saw the my current endocrinologist, who is brilliant, explained that we have been asking for this test, and she literally turned round and said, Let's just do it then. Do you want to go and have a blood test now? And we'll do it right now.
SPEAKER_02:Hallelujah.
SPEAKER_01:Hallelujah, exactly. Yeah. So yeah, it was it was a bit of a long road, and I think changing hospitals probably delayed me, I don't know, three months or something like that. Um, so uh the tumour was found February the 13th, 2023, and I had the operation December the 5th, 2023.
SPEAKER_00:Okay. That's that is quite that is quite a long gap, yeah.
SPEAKER_01:Yeah, yeah, indeed. Um, but I don't know, maybe it's dramatic. I genuinely believe taking that that extra time, moving hospitals, me and my wife both believe saved my life.
SPEAKER_02:I I totally understand that. And it's got to be completely the right thing for you, and you've got to feel comfortable and happy with the team that are there. You know, uh this is such a rare thing, I think, that some hospitals and and um are just they're just not prepared for it. Uh and so going to see a unit that really does know this inside out is is essential. So you had your surgery in December, and how did that go?
SPEAKER_01:Um yeah, so I was the last one down for the day, which is never fun. So one of the the big side effects I was suffering from was appetite. I was through the roof. Um, I was eating constantly. And of course, one of the great joys of acromegly is joint pain. And of course, the more you eat, the bigger you get, the more joint pain you get, becomes difficult to exercise. So by this point, I was I was a big guy. And I just you know had to have the old special bed wheeled out and all that. I was I was really I was big guy. Uh otherwise, though, you know, the um the anaesthetist wasn't overly keen, but we had a chat and obviously went ahead. Um otherwise, though, it was fine. Um the actual surgery, from what I know anyway. Um a couple of days later, my nose was still absolutely streaming. I had a CSF leak. Um and they they left me, I think it was the Friday, they came around and said, right, you definitely have CSF leak. And we'll leave it for the weekend, hopefully it'll resolve itself. If it doesn't, then we'll have to do something about it. Um, we really don't want to take you back down for another operation, so we are really hoping that it does. Um it didn't, obviously. So I had a lumber drain, which was horrible. I would say about the worst experience in my life. I've had it as well. It was horrendous. Yeah, yeah. Um I I as I say, I'd got to such a size though where they didn't want to do it kind of in the ward where I was, so they did it. I think it was called the Cath Lab, which is like a big 3D X-ray machine. Um, and yeah, they did they did it in there, which was pretty scary on its own. Um and yeah, it it it made me really violently ill. It um I for three days following, I don't really remember it. I remember the next morning waking up feeling so sick, and then I was sick, and feeling weak and just just not myself to the point where I text my wife and said, I I really feel like you need to be here because I feel horrendous. Um and yeah, the next the next couple of days after that, I just don't remember. I do remember them taking all the uh all the bandaging on the the sticky pads off, folks, because that that hurts. It it was horrible. And I ended up pulling the uh pulling the drain out as well by accident. Yeah, I moved on the bed and caught caught the wire and yeah, it pulled out. But luckily by that point, that was a couple of days in and it had it had sorted itself.
SPEAKER_02:Okay. Yeah, I think I was on a lumbar drain for about two weeks because I I caught meningitis. Mine got infected because they sent me home uh with the CSF leak, which uh, you know, this was 2007. I I would really hope no hospital sends anyone home with a CSF leak now. But um, yeah, mine got infected, and then I was on the lumbar drain for two weeks, and and I got up to go to the toilet without switching the drain off. And I was stood up and I just didn't think about it, and suddenly I had this massive bubbling sensation in my brain and my nose. It was just the worst thing I'd ever experienced. They were like, do not move, and and or if you do move, ask us first so we can switch the drain off. So, you know, you learn by your mistakes, don't you?
SPEAKER_01:Yeah, I was told about that, but I you've just reminded me the the first time I got up to go to the toilet after after I'd had the drain put in, I um my blood pressure bottomed out, and it was 40 over uh sorry, 45 over 25. It was horrendously low. And like I say, at this point, I mean I was I'm six foot four, I'm big guy at this point, and uh literally had uh the little the on call uh oh sorry, the the duty nurse that was there, who if she was five foot tall and maybe 50 kilos, I'd be amazed. And she was literally holding me up against the wall. And like I was it was horrendous, it was absolutely horrendous. But the but the lumber drain did its job? It did in the end. Yeah, in the end it did. Um, and I was in I think I was in 15 days in the end, which I think obviously not as long as yours, but um I think it's pretty uh a pretty solid amount of time to be in hospital for for the transvenodal section anyway.
SPEAKER_02:So they let you home, and did you did you I got before I before you answer this, uh I want to ask, you've gone from within a year to I assume not knowing anything about acromegaly and transphenoidal surgery and pituitary tumours, to suddenly having you know a triple secreting hormone issue and CSF leaks and and everything? Did you not did you notice anything on the way uh, you know, prior to your diagnosis, albeit the fact that you're you have blood in your eyes and a massive headache? And how did this impact you? You know, this all happened in the space of like eight months. I mean, it's a big shock. So how how did you deal with it?
SPEAKER_01:It is a big shock, you're absolutely right. Right. Um there were there were signs, as I think everyone has. Um, you know, as I said, I was by the time I had the operation, I was size 14 shoe, I was size 12 since I was a teenager. Um so you know, the usual signs, the furrowed brow and the big hands and the the weight gain and the appetite and blah, blah, blah. Um, I think the first sign, my wife and I both agree we can trace back to when I was about 18. I think there's there's stuff before that as well. Um, but I we were on holiday and noticed that one side of my chest was bigger than the other. Um now, obviously, I actually started typical hormone secreting and one of those being prolactin. In hindsight, made sense that possibly the prolactin was causing the one side of my chest to grow. I went to the doctors and um they sent me off to the hospital and whatever else, and was basically told as as always, just go away and lose some weight, and that's probably ill. So didn't think any more about that. Um the next major one I think was during the first COVID lockdown, um where I'd I'd started to swell, like really started to swell my ankles, you know, the usual places, the feet, the hands. Um, and again, went to the doctors and explained, yeah, okay. I have quite a high pressure sedentary job. I'm at my desk. It was really busy at the climate, so I was at my desk probably 12 hours a day. Um, and they said again, go away and lose some weight, uh, try and move a bit more. You know, if you're still feeling this way in six months to a year, come back or look at it. Um and yeah, then it was it was all pretty quiet. I was just steadily getting bigger, just bigger and bigger and bigger. And I think over the course of going to the doctor that that second time where I was swelling to the point of surgery, I'd probably put on maybe 10 stone. And it was just could do nothing about it. Um yeah, and it's it it's very frustrating in hindsight because if I'd just been sent for that one blood test for the to check for IGF or to check for a growth hormone or you know, pituitary hormones, it would have been picked up well, what, 18 years ago.
SPEAKER_02:Yeah, and you would think someone of your original size, i.e., if you're six foot four already, then there's there's obviously been some busy paturatory activity going on when you were a kid. Um I'm surprised they they didn't look into that. But these things are wonderful in hindsight, aren't they? And and um unfortunately you just gotta live with it and and don't let it knock you about too much. Don't let it, you know, don't let it stick in your head too much, I think.
SPEAKER_01:Yeah, indeed. And I think I think it did, because like you say, it was such a shock. And um my my initial endocrinologist as well put me on to hydrocortisone. Um, despite my pituitary uh, sorry, despite my cortisol levels being within the range, um, they were on the the lower end. So he put me on hydrocortisone, which I found made me really foggy and forgetful. Um and in my job, I I we can't afford for me to be foggy and forgetful. Um, you know, then what I do is um if if I make a mistake, it can literally cost the company hundreds, hundreds of thousands, millions of dollars. And it's it can't be done. So I was basically taken out of my role for well, that was pretty much immediately, so February 23 up until March 24. Um, luckily I had critical illness and stuff like that through work, so I was still getting some of my salary. But um yeah, I wasn't actually allowed to work, um, which I think put me into quite a dark place. Sorry, just for the benefits of everyone that's listening, what is it that you what is it that you do? So I work in shipping. Um, I work with oil tankers. Um, so yeah. It's but it's it's very important, and I'm sure there'll be people booing at the radio now because it's oil. But yeah, it's it's very important. And like I say, it's literally it can be millions of dollars if I make a mistake, which then the company I work for has to pick up. So, you know, it's it's only reasonable with the company in mind that they they take me out of that role for well, until I'm ready to to get back into it, which I now I am. Sorry, I now am. Um, but yeah, it it sent me, I think, into quite a dark place. Um, particularly because of what it is I do. I obviously one of the major risks of the surgery is blindness because of how close it is to optic nerves and what have you. And when I was told that, I think I pretty much immediately thought, oh, I can't actually do my job if I'm blind. Um, how's that gonna work? And then the brain starts worrying. And I think it got quite bad when I realized because of life insurance and stuff like that, I'm thinking about the future. If I don't make it, I'm literally more valuable to my wife if I'm dead. Wow. If I can't do my job, we lose our house, we lose everything. Um, you know, obviously there's more to life than that, which I appreciate now, obviously.
SPEAKER_02:No, but those are those are those are but those are major considerations, you know, and um and weigh heavy.
SPEAKER_01:It really did. It really did weigh very heavily. Um, I think when my HR department rang up and said, Oh, we need some details for the surgery for the life insurance, then I was like, oh, okay, thanks for that. Three days before the uh before the operation, thank you very much.
SPEAKER_02:So it's it's um it's 2025. This the you've come well, you've come out of the surgery, the lumbar drain has done its job. How how is how has life been since that operation? Are you on medication to manage it? Are you are you living a better life? Are you feeling you know more like your old self? How how what's the difference?
SPEAKER_01:Yeah, um, so like you say, lumbar drain did its job and we've had no no no further issues on that. Um my blood work is astronomically good. Um, or it has been up until the last couple of weeks. I've uh I spoke to my endocrinologist a few weeks ago and said, look, I can see obviously my growth hormone, I'm I'm in remission for acromegaly. Um, but I'm feeling horrendously bad. Uh like I'm swelling again and um just generally not feeling very well. Um, and so they got me in for a uh growth hormone day curve, which came back at 0.3, which is obviously fantastic. Um, but my cortisol um is down towards well, one of the results that came back was 100, um, which is I think according to the NHS is critical level um and explains why I've been feeling so terrible.
SPEAKER_00:Right. Okay.
SPEAKER_01:So again, I'm back on hygacortisome. Um, luckily, none of the brain fog has come this time, which is really nice. And we uh started that what a week ago, uh maybe 10 days ago, and feel so much better for it. Really do. Um, like night and day, feel so much better. So yeah, um, I guess to to answer your question, yeah, life's not too bad. Um, as I say, back at work. Um and yeah, trying to trying to live life to the best that we can. Live your best life. Absolutely. As the phrase goes.
SPEAKER_02:And it's very fresh. You know, I talk to people, we have the Acromekuli community in the UK. We had a meetup in the UK a few weeks ago. And there are people there that were diagnosed, you know, within weeks or months, some that have lived with it two, three years, some that have lived with it 10 years, and plus, and everyone's journey is so completely different. And it's and it's great to hear that even with what was a complicated process and uh you know a complicated set of um issues, that you're through it, tumour was removed, and you're living life in a way that maybe you didn't see possible a couple of years ago. Uh and it's I think it's really reassuring to people hearing this that there is more often than not a positive end result.
SPEAKER_01:Yeah, there is, absolutely. And it's you know, okay, I've had some issues. I've I'm sure I've had more issues than some people, and I'm sure I've had less issues than than others. And, you know, it's it's not a particularly nice thing to have to go through. But now, in hindsight, I consider myself really quite lucky. Um, you know, they there's some question as to whether or not there's any residual tumour left. So I've got a PET scam coming up for that. Um and if there is, then there is. What can we do about it? I guess the way I'm trying to look at it is we deal with it. Absolutely. We deal with it. And at least now I will know that it's there. And if it's taken 17, 18 years to show itself unmedicated, then hopefully we can manage it with medication and whatever else. So as long as we can avoid another surgery, I'm pretty keen on that. Um, then we'll deal with it.
SPEAKER_02:And what would be your advice to somebody that's been recently diagnosed?
SPEAKER_01:I know somebody, not um not that's been diagnosed with acro, but uh young lad that I know who's only 22, um, who has a pituitary tumor and he's got cushions and he's really, really struggling. Um, he's in a not particularly great place, that's in. Um, and I'm as someone who has been through some of what he's going through, I'm really trying to be there to help him. Um, and I think the major bit of advice that I gave to him was to fight for yourself, to fight for your health. And if you're not happy with something, then don't be worried about upsetting your doctors, don't be worried about upsetting anyone because if you're not happy, you're not happy for a reason. And uh it's your health that's on the line, it's literally your life that is on the line.
SPEAKER_02:Yeah, I think that's a brilliant bit of advice. And you know, um us Brits can be very uh, we just go with the flow sometimes. And uh, you know, we're very grateful for an NHS and we don't want to question it. But yeah, when something as serious as this and you feel that you're not getting the best, it is really important to fight for it. And and uh, you know, you've got to be happy or as happy as you can be with with the treatment and the advice that you're receiving.
SPEAKER_01:Absolutely agree. And I think there's there's good resources out there for people to be able to be able to do that. And like you say, as British people, we go, oh no, we won't rock the boat and we won't be difficult. But like I say, it's so important, you know, if if you're not sure about something, speaking to the Facebook groups, which are full of fantastically helpful, friendly, knowledgeable people, and speaking to the pituitary foundation if you can't get anywhere with with your actual care team. Um, and as I heard someone else say on a on a previous episode, badgering NHS nurses and things like that, these are the things that you have to do to be able to get through it, to be able to look after yourself.
SPEAKER_02:Sam, it's been absolutely wonderful talking to you and hearing your story. Something a story that's uh really fresh for you, obviously, and um had a big impact on your life. But you do really seem to have come through the other side with a very stoic attitude towards it, and the fact that you're helping other people now is, I think, really part of the healing process and acceptance that it's happened because now you're in a place to help someone else. So um I want to say a big thank you to you for sharing your story. It's uh been a really amazing one. Thank you very much.
SPEAKER_01:No, thank you, Dan, and thank you for the podcast because it's it's really helpful for people. It really is.
SPEAKER_02:Fantastic.
SPEAKER_01:Thank you, Sam.
SPEAKER_02:If you found Sam's story interesting, of course you have, and you want to hear other Acrotales like Sam has, head over to Acrotales.com where you can find the ever-expanding library of interviews. And of course, you should subscribe to the podcasts to receive the latest updates via iTunes, Spotify, or wherever you get your podcast from. Thank you so much for listening, and we'll see you next time for another Acrotale.