It started off. I saw my mother in a reflection. My mother died many years ago. I suddenly saw the reflection of myself in, in a shop window and it was me and I was quite bent. And I already knew that I had, we call it in English, a Dowager’s hump. I can’t, I’ve forgotten the name now in French. Yes Dowager’s hump I suppose. And I’d realised that I was getting bent. And then at some point I don’t know for what, I was measured and I was [laugh] much shorter than I thought I was.

So your mum had osteoporosis, your mother?

One didn’t know about it then. She did break her arm and she did have a plate put in, screws because I looked. I was the eldest of the four of us. And I was 13 at the time and I looked after the household while she was in hospital. And certainly she became very bent and that’s one of the things that does it for me. I do, if I see, catch a reflection I do try and straighten up but the very top doesn’t straighten.

I look back and I realise although she wasn’t thin in fact she was larger than me she certainly, her bones didn’t feel, repair well and certainly she was, became very bent.

I had a hysterectomy in 1984rsquo;85 approximately. And I was fine after that. I had no problems, nothing. But in 1992 I had started having severe headaches. And headaches were so bad that I could not cope at all. Even the painkillers wouldn’t, wouldn’t make any effect.

And then I had a sort ofI had a heart problem type thingthat I was I was going to have a heart attack. So I went to the doctor’s. And I told her that I sometimes I feel so hard at night I cannot breathe and I feel that I’ve got a heart attack. So we started looking into it whether I had any problems. And I think my GP under, understood me immediately what is the problem. And she said, No you do not have a heart attack Because she took my blood pressure and everything and there was nothing wrong it. And suddenly she said I because of my hysterectomy I must be suffering from some sort of lack of hormones. And she started, she wanted me to put me on a hormone treatment, which we started on hormone treatment in the beginning.

And since 1992 onwards I had a very good life. I did not have any headaches. I did notI had more energy. I was working full-time. And no problem at all.

And then at that time doctors said that I should, I may suffer from osteoporosis. She explained to my GP. And my own, my GP always said that I had problems with the bones. And I should be careful. And that’s it. Nothing else happened. And I was on HRT so I thought it was helping.

Are you having treatment for that?

I am. I’m on 25 microgram, which is a very low dose a day of thyroxine. The reason to begin with the, the doctor didn’t want prescribe it. She said it’s bad for your bones. But because I was so depressed with the double fracture, the osteoporosis, the under active thyroid and my hair was falling out, she said, Well can’t have you getting so upset. So she agreed to give me this 25 microgram of thyroxine. And I feel a lot better. I don’t feel so tired.

And I was very constipated. And another doctor in the surgery had been following up this constipation over a period. And I had all sorts of tests and whatever. And it turned out to be this under active thyroid. And since I’ve been the thyroxine, the small dosage, I haven’t been constipated. So yeah I mean obviously if you’re under active thyroid you feel very sluggish don’t you? Weary. So yeah I feel a lot better since then. So she agreed to put me on 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.

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.

I think it first occurred when I was on medication for not sleeping and I fell down the stairs twice. And hurt my back. And I just went to the doctors and said, And my back hurts And it snowballed from there. So now I attend [name] Hospital every three months. But my doctor, said, that, she thinks I was on the wrong drug because it should have stopped this happening with my spine collapsing.

Which drug were you on before?

Well my depression drugs. I’m on Phenelzine and Lanzipan. And I’ve been on Phenelzine for over twenty years. And the Lanzipan about five years. And they suit me. Phenelzine is a very old drug and they don’t like prescribing it because there are restrictions with it. I can’t eat cheese, yeast extract, anything fermented. Yoghurts. I have to avoid them. Gravy is another thing. I just can’t have them. But they suit me, I have been in hospital and tried to come off them. And tried other drugs, but they just made me worse. And I think it’s those drugs that have caused the osteoporosis. They can’t think of any other reason why.

The consultant explained to you that the factor in your case was the medication for depression?

They know. They said it could be. They haven’t definitely said it is. But they said I’ve been on it so long it could well be a factor in getting the osteoporosis.

Any other ideas why you might have got it?

None whatsoever.

What do you think caused this osteoporosis?

Well, they reckon it was caused through taking prednisolone, a very high dosage of prednisolone over a two or three year period when I had the ulcerative colitis. When I first, was first diagnosed with ulcerative colitis I had intravenous, the prednisolone, very high dosage. And I took prednisolone for three solid years before it was reduced. And this is why they sent me for the back, the bone scan, and that’s when, they reckon that’s what caused it.

Did your mother have osteoporosis?

No, no, no. There’s never, nobody in my family or my wife’s family ever had osteoporosis.

But I mean, before, I mean before I had the, my operation, I used to take a lot more tablets. But when, when I had the operation they took all the pr-, the inside away, so I don’t, I’ve lost, quite a few tablets I don’t take now. I mean I don’t take prednisolone any more. Only, I can take prednisolone, occasionally if I really have a bad spell I can take a course of prednisolone and it takes the pain away for a while. And that seems about the only thing that does help at the moment. But I don’t take it very often these days.

I think it was round about 1994, something like that, that I originally went to the doctor. I had been so tired over the Christmas. When we came home, because we always go to our daughter’s for Christmas, when we came home, I went to the doctor. He took my blood, my blood pressure or something, and then said, Oh you must go to the haematology department. And let them see. You have got some form of anaemia Which they whittled down eventually to haemolytic anemia. And they said they could put that right, by giving me some tablets.

Well the first lot didn’t have any effect whatsoever. I don’t even know what they were. And then they eventually put me on steroids. Well they started off with quite a low dose, I was taking something like two or three in the morning and two or three in the evening, till they were upping and upping and upping them. Every time I’d go back for a check up, it wouldn’t be any different or it would be worse or something. And then they would increase the steroids, so in the end I was taking 24 per day of 5 mgs tablets. They were, I was taking 12 in the morning and 12 in the evening.

And that went on for about nine months. And although every body said I was taking a high dose, nobody told me anything other than it was all right to take them. And of course I went on taking them till in the end they decided, well they weren’t having any effect on the blood treatment I was supposed to be having, and the only thing was to remove the spleen. So they removed the spleen and put my blood right and of course I stopped taking the osteoporo the steroids.

Well after some little while, I don’t recall how it really happened, but I was going to the haematology department regular, on a regular basis to check the blood and some how or other they found out that, at least I starmy back started curving and somebody noticed it, and then they investigated and found that yes I had osteoporosis.

I think they did a bone scan then and then they found out it was very widespread and you know, there was not really much they could do about it.

Hello my name is David, and I’ve had chronic rheumatoid arthritis for the last twenty three years, you know? And I’m 25 years old. And over that time I’ve had you know many operations, you know taken many medications, and for the last two and a half to three years, I’ve also been diagnosed with osteoporosis, you know, which is known as a thinning of the bones and you know and that means also I can have an increased risk of fractures and breaks of the bones.

And I’m thinking that this has been brought on you know because of my longstanding chronic rheumatoid arthritis. You know which I’ve had since I was two, you know and I’ve got all my bones, joints, muscles all damaged because of that. And also I think, also I’ve been on steroids since I was two you know? And I mean I’m only on a fairly low dose at the moment of 7mg, but I mean I’ve been up to like 40, 50mg a day, I mean and I’ve had them every day since I was two. So I think you know a combination of the steroids and of the arthritis, of the chronic rheumatoid arthritis have resulted in you know all the joint you know damage, and has resulted in the osteoporosis.

So what do I think caused it? I think because I was such a heavy smoker up until I was 40. I used to smoke 40 to 60 cigarettes a day. And also I think because I had aand I stopped when I was 40 because I had to have a hysterectomy. So I needed to stop smoking for the operation. The hysterectomy was to try and cure the iron deficient anaemia problem. And, they left my ovaries there. At some stage I hadoestrogen.

HRT?

Yes, but it was just oestrogen only. And, but it didn’t agree with me at all. The pill never agreed with me, and the oestrogen didn’t either and I had a suspected deep vein thrombosis. And so I wasn’t on it very long and my legs would swell up and everything else and then after nine months, the consultant said, Oh we could probably put you on Premarin Is it? Is that one of them? And I said, No I don’t think so So I was only on sort of HRT, not for very long. I wouldn’t have said more than a year. I wouldn’t have said.

From what I understand about osteoporosis that could have been the reason that I have got it. I had no family history at all. My Mum’s one of ten. Seven sisters. And nothing. And my grandmother lived till she was 94. She was straight backed like me. No Dowagers humps, nothing in the family at all. So I put it down, probably the smoking. I have always eaten dairy, always, I have always been similar weight to this really.

So it was a shock, I must say
To be diagnosed?

To be diagnosed with that, because I thought that I was tough. Well I am tough, but then again with my husband having rheumatoid arthritis you see, I have always done a lot of lifting. So my wrists are not good, and my hands are not good, because he couldn’t do it. So if there was furniture to move, I did it. You know, I was alwaysand then I had a lot of years looking after him in the end. But that was lower back though, looking after him, and everything is the wrong height, the chair, the bed, the bath, so looking back I have worked my body quite a lot so that is the reason for the wear and tear I suppose.

I’ve always been an active sports person. I used to play rugby and football. And I can remember breaking like my wrist playing football and my fingers but nothing that would say that, you know, that to say, to suggest that I had osteoporosis. And actually I, you know, I’d quite an active lifestyle but the only thing I can think of is, is that I became. In my job I was a sales director so I actually became sitting either behind the steering wheel of a car or actually behind a desk. So I’d very, very little exercise, probably ten years before it happened. And really I’m one of seven children and we’ve all been, you know, I was the biggest out of the seven children. I’m the sort of largest. I’ve always have been the fittest and probably the strongest. So when this happened it was twice as much of a shock really to be honest. So I had no sort of prior hint or prior inkling that this would ever happen to me because it came as quite a shock to find out I had osteoporosis.

Do you have any ideas about what caused this osteoporosis?

I was actually tested for testosterone levels in the beginning. I went through all the normal tests. I used to smoke but I wouldn’t consider myself a heavy smoker. I was never, certainly never been a heavy drinker, just a social drinker if anything. So I’m really at a loss and but apparently 50% of males who are osteoporotic, who have osteoporosis are actually what they call idiopathic. But I find, you know, there’s no real cause and I find that the most frustrating thing really. Is not knowing why it happened to me. You know I did, if I find there’s a reason, that you know somebody could say, Well it was because you did this or because of that. I think I would feel a little bit better. But not knowing why or how it happened is quite frustrating really as a patient.