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Keith - Interview 38

Age at interview: 55
Age at diagnosis: 54
Brief Outline: His diagnosis came about in 2007 after medical investigation for a lump on his breast. The lump proved to be benign but the blood tests indicated that he had low testosterone levels and a DXA scan revealed mild osteoporosis. He was put on HRT treatment (testogel).
Background: Keith works full-time as a statistician and he is also a concert pianist; single. He was aware of breast cancer in men but thought that osteoporosis affected women only.

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Keith was prompted to go and see his GP after he found a lump on his breast. He was aware of breast cancer in men because he knew of someone dying of the condition. His GP referred him to the breast clinic and the tests revealed that the lump was benign and most probably made of fatty tissues. But the clinic requested blood tests to try an established what had caused it. Keith was told that the test results would be sent to his GP and was asked to make an appointment to go and see her. The blood tests showed that he had low testosterone level but still within the normal range. The GP decided to send the result to an endocrinologist for further investigation.
 
The endocrinologist requested further blood tests and sent him for a bone density scan. The scan results revealed that he has osteopenia in the hips and osteoporosis in the spine. An appointment was made with the specialist who told him that he only has mild osteoporosis. Keith’ mother has osteoporosis and the specialist indicated that most probably his condition resulted from the hereditary factor but it was exacerbated by his low-ish testosterone level. The specialist put him on HRT – testogel to rectify the hormonal imbalance. He is also taking calcium tablets and vitamin D; a thousand milligrams a day. He was told to repeat the DXA scan in two years time.
 
Keith started his HRT treatment three months ago and said that initially he felt a lot better and noticed that his energy levels and his sex drive have increased. But after a few weeks on the testogel he became aware that he was feeling more irritable. Also, a close friend and fellow musician commented that the HRT treatment was affecting his piano playing and making him a bit hyper ‘always on the go’. His piano playing is very important to him and he is concerned about the emotional side effects of his treatment. Keith decided to reduce the dose from once a day to twice a week and is waiting to see his GP and discuss this with her. He said that since reducing the dose he feels less irritable. Keith has now seen his GP who was entirely on favour of the change and said that adjusting the dose was commonplace with women on HRT.
 
Keith’s lifestyle has not at all been affected by his diagnosis of osteoporosis. His GP has reassured him that his quality of life didn’t need to change because he is fit and healthy. Besides, he knows that there are osteoporosis treatments available if and when he might need them. From his mother’s experience of osteoporosis, he also knows that treatment can be effective at improving the condition. He is concern, however, about the side effects of his hormone replacement therapy. He hopes that his GP will agree with him for the need to reduce the HRT dose to a level which is beneficial for his osteoporosis without the emotional side effects.
 
Keith thinks that there is not enough awareness about the fact the osteoporosis can affect men as well as women. He didn’t know he was at risk even though his mother has osteoporosis and thinks that the most effective way of preventing and/or early diagnosis is to have a screening programme for men over the age of fifty.
 
 

Keith was in his fifties when he learnt he had osteoporosis after a breast lump was investigated.

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The story starts just over a year ago, August last year, when I discovered a lump in my left breast, about three to four centimetres across. I only realised it because it was rubbing into my t-shirt when I was running to, for an appointment, and yeah this was a bit of concern to me, and it happened my girlfriend had once you know had a friend who, a male friend who died of breast cancer. So I knew that men could get it. So I went straight to my GP after that and then she sort of referred me to the breast clinic. And anyway it came out all clear. Had the very, the needle aspiration and the ultrasound, it was clear, but they, they requested blood tests you know to find out how the, how the, how it happened. And you know and asked me to see my GP, they wouldn’t let me have the results.
 
My GP, the first thing she did was to repeat the blood tests, which showed exactly the same. And in the meantime we found there was nothing else abnormal in you know in all the other, all the other things seemed to be okay. You know it was just the particular, particular hormones, so she referred my results to an endocrinologist. And who might have been Professor [name], I don’t know, in city. And then he was you know asked to get, to get more tests, but also they referred me for a bone scan. It had been decided by this, in the meantime that I had mentioned that my mother had had Osteoporosis, for you know quite a number of years, and so you know there wasn’t, and the endocrinologist just thought that it was a possibility that the low-ish testosterone could give me a risk of, you know, of Osteoporosis in later life, because if anybody had thought there would be a problem now, my GP certainly didn’t. He just thought the, he was being very cautious. But I had the bone scan, and that meant I did have Osteoporosis. I think it was osteopenia I think in the, in the hip, but it was Osteoporosis in the spine. And as a result of that they were getting more blood tests and I ended up seeing Professor [name].
 
And he said well it was only mild Osteoporosis, he said there is nothing, he thought it was probably mainly hereditary, given my mother’s history, but also probably exacerbated by the low-ish testosterone. 
 

Keith took HRT in the form of Testogel to improve his testosterone level and prevent further bone...

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He said well it was only mild Osteoporosis, he said there is nothing, he thought it was probably mainly hereditary, given my mother’s history, but also probably exacerbated by the low-ish testosterone.
 
And he said it would be a good idea to take some HR, you know take HRT. So he, and he said so he said get your GP to prescribe Testogel. And, which she did. And, so I’ve been taking that now for about three months, because, I didn’t see my GP after that, but she wrote a prescription for me to pick up.
 
However, it’s not been you know entirely satisfactory. I mean to begin with, when I started the medication about three months ago I did actually feel a lot better. And I was also having one or two problems with my sex drive before that. No doubt really to the testosterone and it cured that straight away. And but after months I’d begin to be you know, I began to feel I’d changed a bit, as a person, I started getting a bit more irritable, you know a more adrenaline fuelled.
 
And she started getting worried about me and I said well I, it’s, it sounds like you know; it must be the testosterone I think, the Testogel. So what I’ve done actually, I’ve cut down the dose to about, from one a day to twice a week, and in fact I’m just about to go to book an appointment with my GP as my, initially you know two months supply has now almost run out after you know after three months. So I’m going to, that’s what I’m going to do. I’m going to discuss reducing the treatment.
 

Keith occasionally drinks more than the recommended units but he doesn’t ‘binge drink’.

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What about drinking alcohol?
 
I probably, I mean I don’t binge drink for a start, I do like my, I do like my wine, and I probably struggle to stay within the 21 units. I mean I’ll occasionally just a little drink, and I top them up and I’m probably more like about 23 a week, so I’m probably just a little bit over, but you know not, not hugely over, and, I’m frankly I mean, I know that is very little, I mean, those you know those guideline limits were based on very little evidence anyway, it was just basically guess I think by the BMA. So you know I’m not too worried about that, and as I say I don’t, you know I don’t binge drink.
 
And do you smoke?
 
I don’t smoke. Never smoked.
 
Okay.
 
So as a matter of fact and on the Canadian website that’s one of the things that you could actually put in, the you know, basically your drinking habits as well, you know and I, you know I put my alcohol you know, my estimate 24 units or whatever it was in into the website and it got some tiny increase in the risk I think, but it was pretty low, so obviously I’m not, you know I’m not a heavy enough drinker for it to seriously affect my risk of osteoporosis.
 

Keith found websites helpful to learn about fracture risk rates and testosterone treatment but...

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I just Googled it, and you know one thing leads to another.
 
What do you think about the information you found?
 
I found quite a lot, no I found a lot of good stuff about Osteoporosis, for example there was even one Canadian site (http'//courses.washington.edu/bonephys/FxRiskCalculator.html), where you could actually put your levels in, you know, they, the levels from the report, which I did, and they come out with risk factors and, and for example it, you know, you know, it said well based on your, your hip measurement you’ve got something like I think a 5% chance of a hip fracture within the next 10 years. It might have been less than less than that even, but it was quite low.
 
Do you remember the site address?
 
I don’t, no, it was all, it was it was last, you know, it was after I had the bone scan which I think is late last year. I can’t remember any of the URL’s no.
 
But it was a Canadian one?
 
Yeah, it was a Canadian website yes. That was you know that was quite good, but it there was an awful lot on the web about it, and all about the treatments, and yeah one of them, one of them in the, in the link to testosterone deficiency was one of the causes which was mentioned. And so I went into it, and you know and you know I found quite a lot about the effects of you know testosterone treatment. Which were basically pretty positive, you know it seemed to me, but you know the interesting thing was there was not many, there was not a lot about side effects, but when I actually got the pack of the testogel there was actually quite a lot, there was a long list of possible side effects given on it, you know, one of which was I noticed was actually it was irritability. Which I had no, you know I had observed in myself after a month.
 

Keith thinks there needs to be more awareness and information about the fact that men can develop...

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Were aware that Osteoporosis was something that affected men as well as women?
 
Well frankly, actually I wasn’t until you know when I had the blood tests, I mean I actually didn’t know that men got it. And it was only when I did know that men got breast cancer, which is why I went straight with the lump you know, but that’s entirely went for my girlfriend because she had an old friend who died of it, and but it wasn’t until my, you know, my GP sent the blood test results to the endocrinologist and a report came back and he just said, a possible risk of Osteoporosis in later life. You know because the testosterone is rather low, it’s low, you know it’s low-normal. And that’s the first I knew of it. I thought, ‘Men, men can’t get Osteoporosis?’ You know?
 
Okay, so it was,
 
My GP said it’s extremely unlikely, because you’re actually in the normal range. And it is unusual for men to get it. So it, she said the bone scan will almost certainly be negative but you know he’s obviously playing safe. But it wasn’t you know?
 
Do you think there is enough awareness about the fact that Osteoporosis can be, can affect men also?
 
Well perhaps there isn’t enough awareness. You know I mean if I didn’t know, you know. You see I knew my mother had it, but she never ever mentioned oh men get it too. I thought it was just something which women got, so I’d never heard it, I don’t know any man who’d ever you know had a fracture as a result of Osteoporosis. You know so as far as I say I wasn’t aware of it.
 
Okay. What do you think needs to be done?
 
Well, I tempted to say, there’s no point in making men aware of it, unless they’re going to give them more bone scans, because otherwise what’s, they’re going to say, well I might have Osteoporosis, but how do I find out? The only way is to, you can find out is a bone scan. You know maybe in the past, I mean there were not so many units around and it could’ve been, and you know of course in those circumstances only people who you know were at risk were going to get scans. I don’t know whether things have changed enough in fact for… I do know that there’s a unit in [city], and I know there’s one at [city], and I think there might be one at [city] as well, I don’t know. but if there are now, you know you know, if there are now sufficient units for everyone in the country for people to get them as a matter of routine, then you know maybe there should be some sort of screening.
 
You know I couldn’t say that, I don’t know what the statistics are, I don’t know how many men get say you know get hip fractures, or fractures as a result of it you know so how serious a problem it is, you know. Now you know if maybe beforehand there may be so few I don’t know, in which case, it’s its not a big issues, because if it’s a substantial number then obviously it would be I think a good idea to get it diagnosed earlier, so you can start taking treatment.
 

Keith's consultant told him that his osteoporosis is most likely to be hereditary but indicated...

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I had mentioned that my mother had had osteoporosis, for you know quite a number of years, and so you know there wasn’t, and the endocrinologist just thought that it was a possibility that the low-ish testosterone could give me a risk of, you know, of Osteoporosis in later life, because if anybody had thought there would be a problem now, my GP certainly didn’t. He just thought the, he was being very cautious.
 
He said [the consultant], I mean, Osteoporosis is mainly hereditary, and he says “The fact that your mother’s got it, you know, is probably, could even be the main reason why you’ve got it you know. And the low testosterone could just be exacerbating it.” Just making it, making it worse that it would otherwise have been.
 
 
Yeah, I think the only two risk, risk factors I’ve got they were, there was hereditary, for me, which was the main one, he thought that was the most important. And then the low testosterone. My GP was very surprised, and she said, “Well you know this one’s low but it’s not that low, you know?” And she was expecting the bone scan to come negative; she was very surprised when it came back positive.
 
That’s when she said well we’ll do some other blood tests, and then we’ll check the liver and gut functions to check I’m absorbing calcium, and they were fine. So you can see that they, they were the only two, unless you know these low levels, high levels of the luteneizing hormone and the the FSH, unless they have some effect in their own right, because there is a little bit on the web about this possibility that you know they could also cause, you know, I think the luteneizing hormone could possibly you know deplete calcium because, because of this one experiment in, in mice.
 
But if you follow the links to that there are other people disputing that and saying you know well that doesn’t, that doesn’t prove anything.
 
 

Keith’s medication makes him irritable. He tries very hard not to be irritable at work.

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I had noticed in myself, I was just trying hard not to get, to go, nearly, nearly always at work actually. I was finding I was getting, you know it’s quite easy to get wound up about things if you feel, you know to, you know to let them get you stressed you know, it was often quite trivial you know? And about having to force you know, trying to force myself not to, trying, trying not to get you wound up, certainly not to let it show. You know, ‘cos I wouldn’t want it to affect relationships, you know at work or anywhere else.
 
So for how long have you noticed this change?
 
I noticed after about, after about a month. I think three to four weeks.
 
After you started?
 
After I started it yeah. So I mean to begin with actually I felt better, testosterone, I actually felt I had a bit more, a bit more energy, you know and as I say I mean after a week or two my sex life improved as well. So actually I thought this is great you know, but as I say after about three to four weeks, that that you know you know I’m getting a bit irritable now, I do feel I’m getting a bit wound up about things.
 
Now it’s not totally conclusive because you know I did have a number of, I was actually quite pressured at work at the time, quite a lot of, you know I had quite a lot of work on, I had a conference coming up, so I wasn’t you know totally, I thought if I, it could be the medication and particularly as I know, knew that it was a possible side effect.
 
I say, I think I’ve been pretty good as keeping it under control, you know, if I do get irritated or feel under stress, not to let it show you know?
 
We are a very happy group at work I mean, it’s a very convivial sort of atmosphere, you know, and on the whole you know it’s the real commercial people which I’m with, I’m in market research, you know they all, the tend to be very, you know people very, very you know lively people, and mostly younger than me you know? And but on the whole it’s a very you know happy sociable sort of group. And you know the last thing I’d want to do is to sort of you know is to spoil that. So I think I’ve been quite careful not to let it let it affect, you know affect relationships with my internal clients.
 
 
 

Keith feels reassured that any change in his condition will be monitored by regular DXA scans and...

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And what are your feelings about the future?
 
I think you know it’s a case of you know, monitor it, and you know if it’s under control and if it’s not going to deteriorate to a dangerous level then you know I’m not particularly worried. But obviously there, I think there is a need for it to be monitored. And Professor [name], he said, you know we’ll get, we’ll get another scan in two years time, he said I don’t think it’s worth having, having one between then. And so you know by the scan every two years or something, and I mean okay it’s all you know about sensible, that’s all like the sensible thing to do I think. And you know I’m not going to get, I’m not going to worry about it unless it starts getting dangerous you know? I don’t see any reason why it should be given that you know that treatment exists you know?
 

Keith said that his mild osteoporosis has had no effect on his ability to do everyday things.

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Has your Osteoporosis affected your life in any way?
 
No not really ‘cos it’s something I can’t see so, you know I mean I’m not, and I’m certainly you know I’m not sort of you know, I’m not consciously taking more care, you know, in what I do you know? I still climb mountains you know, I mean, and yeah the fact that my mother’s, you know had it for years and never broken a bone, so it’s well you know maybe you know you know maybe that’s, that’s true you know, that’s going to be true with me to. You know Professor [name] said it was only mild Osteoporosis, you know?
 
Osteoporosis? No I don’t think so, I mean, yeah I mean I’m probably a fairly laid back about these sorts of things anyway, and I thought well, its, you know, it’s not, first of all it’s not causing me any, it has no side effects at all. The Osteoporosis I’m talking about, not the testosterone. The Osteoporosis is having no side effects. Everyone tells me that you seem to be fine, you know, there’s been no effect on my height or anything, you know, plus it’s only mild. My GP you know my GP wasn’t you know wasn’t terribly worried, so well you know you know you’re fit and you’re healthy, and you know you don’t you know you’re not a heavy drinker, you don’t smoke, and you know and, so I think it’s something we obviously we need to keep an eye on, but you know, it’s you know your condition isn’t serious yet. You know and we can reverse it, you know? You know we can get treatment so, obviously if I’d gone and you know broken my hip I might think differently, but [laugh].
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