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Steve

Age at interview: 44
Brief Outline: Steve started with progressive hearing loss around 15-20 years ago. He was diagnosed with a non-cancerous tumour of the pituitary gland 3 years ago. He recently had a double hip replacement due to a bone problem. His main issue is tiredness.
Background: Steve lives with his partner. Ethnic background: White English.

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Steve started with hearing loss 15-20 years ago. Around 3 years ago, he was diagnosed with prolactinoma, a non-cancerous tumour of the pituitary gland. Whilst he has a good relationship with all the GPs at his practice, he prefers to see one who specialises in endocrine disorders. Current treatment involves steroids, hormone replacement therapy (including tablets and injections twice weekly) and anti-depressants. He also has to take additional medication to counteract the side effects of these drugs, e.g. stomach problems. He recently underwent a double hip replacement due to avascular necrosis (a bone problem) which might be linked to his condition, the drug treatments he takes for it and a family history of arthritis.  

At the time of the interview, Steve’s main problems concerned fatigue and the side effects of taking steroids, e.g. weight gain. The loss of testosterone has caused problems for his sex life and also resulted in changes to his personality at times. Following his diagnosis he felt as though “his life had ended” and he receives a lot of support from his partner. He joined the pituitary society to learn more about his condition but found that nobody seems to have the same problems that he does.

Steve is generally positive about his experiences of health care services but he points to a lack of general “deaf awareness.” He uses a smartphone health app (linked to a smart watch) and a dosette box to manage his medicines. He advises other patients to try and see the same GP whenever they go to the doctors’ surgery.   
 

Steve tries to see a GP who is knowledgeable about his non-cancerous tumour of the pituitary gland. Having a rare condition meant he was unable to find support from other sources such as support groups.

Steve tries to see a GP who is knowledgeable about his non-cancerous tumour of the pituitary gland. Having a rare condition meant he was unable to find support from other sources such as support groups.

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The GP practice in itself has been fantastic. If it wasn’t for the GP who sent me for the blood tests, who knows where we would have ended up. And then since then I’ve got pretty good relationship with all the GPs now. There’s one particular GP that I see really… I try and see re… more regularly than anything else. We normally have a chat and, you know, how are things going, that kind of thing. I saw him a lot when I was first diagnosed. That was the same one who actually phoned me up in the middle of the night, so he kind of... we kind of kept in touch and… so I had a few months off work, so he kind of kept in touch while I was off work and was helping me deal with a lot of the emotional stuff of being diagnosed with the tumour first of all, as well as the practical things. 

I mean, do you think he had kind of a clinical understanding of this strange condition, or is it a question of, you know, the endocrinologist is the person who deals with all of that, I’m just here, you know, to provide you with general support.

He’s, I know he’s got a special interest in endocrinology…

Right.

…himself. And so he did seem to understand what was going on and he was able to some degree reassure me that, you know, although it’s a major, life-changing thing, hopefully it shouldn’t be too all-consuming. Although talk about general, general support, we did try and explore several different options for support, things like relaxation therapy and ma… or massage therapy, just to try and… because I was very, very stressed out when I was first diagnosed. And because… it was a strange thing, because it was tumour not cancer, because it didn’t fall under the cancerous tumour, it was a non-cancerous – well, whatever the… benign… it didn’t fall into any category where I could get support. So although I was stressed out, we were struggling here trying to manage, you know, being told you’ve got this tumour, you could be on medication for life, there was actually no support available for us. There was some carer organisations that my partner joined at the time that were fantastic for her. But there was nothing for me, absolutely nothing. I was just kind of left, because it didn’t fall under the right umbrella.
 

Steve found that health professionals were really good but social care fell short of his needs. He didn’t qualify for the social support he wanted as he didn’t need help with going to the toilet.

Steve found that health professionals were really good but social care fell short of his needs. He didn’t qualify for the social support he wanted as he didn’t need help with going to the toilet.

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Have you got any messages you’d like to give to health or social care professionals in light of your own experiences?

The health professionals I think have been really good. Social care I think has been not so good. Because my partner’s not been very well, when I came out of hospital the second time we arranged for carers to come in and help me, because obviously being under precautions for a hip replacement I can’t put shoes on, put socks on, put pants on, that kind of thing. So we’d arranged for carers to come in twice a day just to help me get dressed so it wouldn’t affect her so that she could kind of carry on. And the carers that came in, themselves the carers were fantastic, but the organisation of that care was atrocious. They’re saying, you know, a forty-three year old man, forty-four, can, can expect somebody to get them up and dressed somewhere between, you know, half past seven and twelve to get dressed, to get a wash and dressed, and then any time from three till eight to get ready for bed. It’s not, not practical for ninety per cent of the population I think, you know, to be told, oh, somebody will be there between this time and this time to get you washed and dressed. So, you know, the latest they could come in is one o’clock in the afternoon to get, to get me washed and dressed, and then potentially they could be here at three o’clock to get me ready for bed, you know, where’s the just general decency in that. That was the biggest thing I think that we found.

And also generally not having people understand, you know, people coming to do assessments and then not understanding the effects of fatigue, the effects of [pause] just the, just the general, you know, just, oh, because, because my partner doesn’t wipe my bum, doesn’t help me to the toilet, I, you know, we’re not entitled to anything. When we’re not asking for anything huge, just…I think at the time we were asking for just some help to keep us going as a couple, you know, something so…because I was off work, I was not very well, you know, just maybe just someone to come in and talk to me so [partner] could go off and do something else, which is not what we were told, we were not allowed, we’re not entitled to it because she didn’t wipe my bum, didn’t do enough personal care.
 

When Steve was diagnosed with prolactinoma it seemed lucky that he wasn't already in hospital. Following diagnosis he was immediately put on a number of medicines essential to treat the condition.

When Steve was diagnosed with prolactinoma it seemed lucky that he wasn't already in hospital. Following diagnosis he was immediately put on a number of medicines essential to treat the condition.

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I went to see the GP to see if I maybe had glandular fever and he did a load of blood tests, and that was on a Tuesday I saw him, I had the blood tests on the Tuesday, and then the Thursday night – never forget that day – we got a phone call at nine o’clock at night from the GP to say could I come down to the surgery urgently. And it’s like this is the kind of questions you ask – what, right now? And he said, yes. And I said, but it’s snowing. He said, yes, I’m on the way to the surgery myself, I’ll open it up and I’ll be there. And I got there, he took my blood pressure, various other bits, temperature I think and whatever else, and said that my cortisol levels was the lowest that the endocrinologist had seen and the person still be functioning, walking around and not confined to a bed in hospital.

So he spoke to the on-call endocrinologist at our local hospital who then agreed that I didn’t need…because at, at that time they were going to admit me straight to a ward and, you know, give me treatment there and then that, you know, he… the doctor actually spoke to the endocrinologist and said, he’s functioning not too bad, he’s alive, blood pressure’s okay, everything’s fine. So he gave me a prescription there and then for hydrocortisone and told me to take… what to take. And then I saw the consultant… I got that, got those medica… that medication the next day, spoke to the consultant the next day on the phone, and saw the consultant I think it was a couple of days later. And that’s when I got told all the, the prolactinoma, I had no natural steroid, no natural hormones, like thyroid was non-existent, growth hormone was non-existent, testosterone was non-existent, and cortisol was non-existent, and this prolactinoma, which should have been round about fifteen for a man of my age, was in the tens of thousands units per millimetre or whatever it was. He then put me on a drug regime of replacement thyroid, replacement testosterone, and replacement cortisol, and another drug which is cabergoline, which is to suppress the prolactin, and currently that’s… I’m still on that drug regime, and that’s what’s happening, it suppresses the prolactin. And that should in time, given enough time, shrink the tumour.
 

Steve only found out that he was eligible for free prescriptions by accident. He has found a phone app helpful that monitors his blood pressure and reminds him when to take medicines.

Steve only found out that he was eligible for free prescriptions by accident. He has found a phone app helpful that monitors his blood pressure and reminds him when to take medicines.

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One thing that I found by accident, nobody actually told me, that if you’ve got this hormone-related problems with the pituitary and – I can’t remember the name, panhypo-popul-pituitarism or something, you’d actually get a free prescription, you don’t have to pay for any prescriptions, and nobody told me that. It was only because I was looking on the w…NHS website for how to…because my prescriptions currently cost ninety pound every twenty-eight days. So until I was on that, I was, you know, having to pay quarterly prepay. And then all of a sudden I found this and I was like, oh my God, I could actually get it free. So something that’s not very well-talked about, really.

I was just wondering if there was another patient who was kind of facing similar issues that you’d faced, what would be your advice for them?

With the medication get an app on your phone, I think that is a godsend, and a dosette box to organise the medication, because, you know, I couldn’t carry around all my medication in a bag every day that I need to take. Smartwatches are fantastic, if you can get that link up to medication, because it v…it kind of vibrates on your arm more discreetly than having a phone ding to say you need to take your medication. Again, the app that I’ve got, the particular one keeps a note of my blood pressure, weight, etc. so I can keep a little bit of a, an eye on things like that. So I just take a, a note of whenever anybody does any test or anything, you know, I can keep a thing of that, so I can discuss it with the GP, you know, if somebody says, oh, that’s really high, I think, well actually last time it was, it wasn’t. Try and see the same GP if you can, rather than go to different ones around the practice. I find…I found that really helped, that really, really helped. Get to know the receptionists at the doctor’s surgery. That’s really good as well, they, the receptionists know me when I walk in now, so that’s really helpful.
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