And how do you do you find it taking all of these tablets?

Yeah, I’ve got used to it after all this time. I’ve got a little thing to put a week’s supply in and it just seems to make the weeks go quick you know. I fill them up and think, I’ve only just done that [laughs]. And they’re all gone again, yeah.

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 needbecause 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.

Margaret: We did have an episode about a couple of months ago, didn’t we, where you felt really depressed didn’t you.

Barry: Yeah.

Margaret: And wanted to sort of drink your life away, didn’t you.

Barry: Yeah.

Margaret: And you know, that was quite a bad time.

Yes.

Margaret: And you felt depressed and that. It’s was like during the winter months, you know.

Right.

Margaret: Because it was day after day like this really, you know.

Yes, yeah.

Margaret: And you only thing you could do was like just go and have some lunch somewhere in the car and then come back home, you know.

And that, I mean that weren’t a very good time was it.

Barry: No.

Margaret: But he’s got over the he just wanted to go and be knocked out somewhere. That’s he felt, you know.

Right.

Margaret: Like a chemical cosh, you know, and that type of thing. The doctor put him on quite quite strong tablets.

Right.

Margaret: But we’ve managed to get off them all those haven’t we.

Barry: Yeah, yeah.

Margaret: And sleeping tablets, just down to a small dose now, you know.

Right.

Margaret: So gradually we’ve managed to do that because I don’t like him being on those tablets for very long and, you know, obviously, it is addictive. And another problem, and also this problem that he’s got, it’s stopped him from having a new knee.

Right. Right.

Margaret: So that’s, you know, it’s made his mobility.

Barry: Not good.

You do all the research, you work out what you want, and then you go in and present that to your GP and say, I want this?

That is quite a lot of the time, but yeah, I’ve got ideas of what I should do and what I shouldn’t do.

And I’m just interested in how that plays out, and how your GP kind of reacts to that kind of level of expertise, do you think they see it as a threat to their own kind of?

They do, I went to see I wanted some more naproxen and, you know, thethis doctor, I see different doctors because I’m not worried about, you know, because I’m pretty confident of what I’m about, and I don’t worry about seeing I just see the first available one. And this woman doctor, you know, did wanted to, give me something a bit better than, naproxen. She tried to put me on this diclofenac or whatever it’s called. And you know, she got quite upset when I said no, you know, it’s it’s dangerous. And she says, well, I don’t think it is if you take it for a short time. I said, I’m not taking it, you know, it’s it’s dangerous, it’s been withdrawn in some countries, it’s killing, Asian vultures, that, you know, they give it to, cattle in Asia, and the vultures that fed off the dead cattle are, dying, because they can’t take this drug, so, you know. She got a bit annoyed at that [laugh]. But that that is the only time I’ve brought things like that out, you know. But you know, twenty-one years ago, you know, you you did what the doctor told you, except for me, you know, I said, I’m not to take steroids, I want an alternative.

The last time I was in, because I had a bad tummy, you know, with this this blood thing and it was painful.

Yes, yes.

It really was painful.

Right.

And I could have I could have morphine on the hour every hour if I wanted it.

Right. Right.

But it bungs you up, you know.

Okay.

So I got off it as quick as I could.

Right.

I got down to, you know, disprin. So as you’ve maybe realised, I take painkillers as little as possible.

Yes, yeah.

I have to be really bad to take a painkiller.

Right. Okay.

Sometimes I have them and I do take them and I do actually, get to the co-co’s if I’m bad.

And this is a bit of a funny question, but how do you know that you’re happy with the care that you’ve received?

How do I know?

Yes.

Because the tablets that I’ve got, there’s been, [tapping sound] touch wood, there’s been no repercussions of anything else like it. The tablets are working and I’m happy with everything as it is. I would never change my GP at all. If I was somewhere else in the country, I’d ask her, pay for her to come down and do it where I was, see [laughs]. I really would. She is lovely, she really is.

So eventually, they discovered or decided that it was COPD. Apparently, they’re very, very closely related, the two. So never having heard of COPD there was quite a learning curve to find out what had gone wrong here and again, I was given tablets and inhalers and so on and, consequently, felt much better because before then I was finding I wasn’t able to go upstairs. I wasn’t able to walk great distances and I certainly couldn’t walk fast and that was not a good thing. In fact, sometimes I got so slow that I had to stop after about twenty paces. At my time of life, I think I was just about fifty then, I thought, Well, this is not right. I have to get something done about it.

So anyway it was improved greatly by the inhalers, wonderful, and I toddled along quite well looking after myself and doing everything I should, and life got much better and I was back to normal, you know, hundred and ten per cent every day.

I was first diagnosed about fifteen years ago, but I had it before then but it wasn’t diagnosed. I was actually relatively old when I was diagnosed. I was like late thirties. So, at the time, it was a bit of a shock, bit of a surprise.

Right. Yeah.

And it took, I think the biggest thing was it was I had to stop driving and it took quite a while to get the medication right.

Right.

Which impacted my job and things like that. At the at the moment, though, it’s fine because now with the medication, they’ve got it under control, I don’t have seizures and I’ve got my driving licence back.

Okay.

And doesn’t really greatly impact on me on a day-to-day basis. There are some side effects from the medication but nothing drastic. Considering I do know people who have epilepsy and it has a dramatic effect, and they’re not able to have a full life.

I consider myself quite lucky.

Yeah. The pain meds were for what, at that point, was the osteoarthritis and the fibromyalgia. So, I was taking amitriptyline at night as a muscle relaxant, to help with the pain so that I could sleep. I was taking citalopram in the morning for a similar, sort of, reason. I was taking pregabalin, which the pain clinic had suggested might help with the fibromyalgia. Oh god, what else was I taking, there was something else, I can’t remember what it was. But none of them were helping with the pain.

And you’ve been up and down in that and you’ve tried these things out, then you have a better idea, I’m if you can say I’m only two years old, I’m still a fairly new rheumatoid patient and in the first year, except for two lots of drugs that I persevered with as long as possible, I had numerous side effects, which necessitated me ending up going to see a third consultant which was a colorectal surgeon, because everybody was making issues about weight.

Then I changed consultant, rheumatology consultant and she went through all the first bits and then she started me on a drug which I was really hopeful would work, because, according to h yes I was having flares, et cetera, and that was the thing that they were supposed to be bringing under control, but if twelve months later I’ve still got the flares and I’ve had some very highs and lows with them and they limit the drug the condition itself is limiting me more and more and more, I’m aware of that after two years, that frightens me, that actually really frightens me, because I thought it progressed, but slow except if you were one of these very unlucky people who just kept progressing and nobody has actually told me I keep progressing and that the drugs won’t work, maybe they don’t do that, maybe they wouldn’t tell you, I don’t really know, I don’t nobody would tell a patient that, but because I’m stuck with knowledge and being a patient, I’m in a very, very difficult position.

And I want somebody to tell me that this is not going to continue to progress, it’s not going to be a fast progression, you know, that, my lungs are not a mortality of three to five years, and, yeah, there are drugs and we will give them to you and we will bring you under control, and nobody has done that.

So, you know, Iit make me feels that it’s not really worth going to consultants, the GP is wonderful, I can’t find one thing wrong with him.

And it’s, you know, the frustration I’ve been through with all the different sorts of tablets and I’ve kind of, you know, had faith in them from time to time and then they’re just they’re just not working. You know, I’ve gathered, after about six different range of epileptic drug, you know, if none of them work, you’re probably never going to find one that does, you know, and on my bad days, you know, when I think [sighs] epilepsy, I would have brain surgery on it, you know, which is on offer. I mean there is that as another.

Right.

Possibility. Yeah, and I again, you know, I swing from that. I do think, Yep, anything. You know, to thinking, Oh, I don’t know. I don’t, I have talked to my consultant about it and he said, Yes, you know, that is an option. But there’s dangers involved in that, you know. You can cause more damage, certainly to your memory after brain surgery and I think possibly, you know, the diabetes would play a part in that with any sort of operation and also I think the fact is mine isn’t as bad as some people who do have to have surgery, you know.

I think one of my big dissatisfaction at, lies is the fact that the drugs themselves aren’t working, so I can’t really point the finger at the neurologist for that but, at the same time, I am being let down. You know, my epilepsy hasn’t been controlled or managed, so who’s letting me down? I don’t know, you know, the sort of scientists who are coming up with the drugs? So there’s some sort of failure there isn’t there and again, that that is sort of beyond me. I’m doing what I’ told, taking what I’m prescribed but it’s not working.

And the with the diabetes, I think the dissatisfaction there again, is the you know, the advice I’m given has shown not to always work and here I am, you know, left wondering is it, am I a different sort of case because of the medications I’m on, you know? It’s that same sort of question mark over the two conditions together. So no, it’s not, the root of the dissatisfaction is that I’m still affected by my conditions, you know, the epilepsy and the seizures, I don’t know. If you’d asked me twenty years ago with the first epilepsy and the drugs were working then I’d have said, no, you know, it’s fine. In fact, I would have done, I know because I’d have sort of deluded myself that everything was alright. So there’s not full satisfaction there, no, simply because, at time, the conditions, well, they are, you know, they’re part of me on a daily basis as a sort of rule, to an extent, really determine what I do. So I’m not satisfied, yeah, and that, it’s hard to say whether that’s the healthcare’s, you know, the part they play, sort of thing. I think quite possibly just not advanced enough yet are we really.