Category Archives: Pituitary

Well, Dr Randall’s secretary got back to me today. Apparently my original referral had been to the wrong team and should have been to the pituitary/endocrine team, as a consequence there has now been delay in my case! (Need to talk to my GP’s about this!).

The correct team have now had my referral for 3 days but still no appointment! My GP might be able to expedite things!

No answer to my queries about an MDT meeting or whether my scan has arrived in Leeds…

Having heard nothing about my referral to the Endocrinology Clinic, I thought I would ring up to enquire. I should have known better – apparently, as on previous occasions, my “call is important to us” although clearly not important enough to answer any quicker than 9mins, after which I find that I have NOT speaking to anyone who can help me “I do not deal with endocrinology, can I put you through to the correct number?”. I am not going to get excited about this, but surely when one rings the single number given for the Appointments Service, whoever answers the call ought to be able to deal with it? Now I am in yet another queue!

When I finally get through to endocrinology, they have no record of a referral! WTF!! OK, Dr Randall agreed that I could go on holiday but surely the referral was still made? So the person to who I speak volunteers to ring Dr Randall’s secretary to find out what is going on….

So, Dr Randall’s Secretary has sent the referral to our consultant’s secretary and the lady with  whom I spoke does not have a copy, nor does she know whether the consultant’s secretary has actioned anything. She has arranged for a new copy to be faxed over and will ring me once she has sorted it out…

BUT

Endocrinology appointments are on a 6-11 week waiting list! I explain my frustration that after an urgent message to see my GP, followed by and urgent referral to the hospital who urgently referred me to endo and opthalmics I now have an opthalmics appointment for late July and no offer of an endo appointment at all! Is this urgent or not? She is sympathetic and as helpful as she can be within her process. I ring off after 26:10 on the phone frustrated and wondering:

a) what ‘urgent’ means

b) whether anyone is looking at my whole pathology or whether I am being seen by individuals unaware of the bigger picture.

Has the MDT meeting that was mentioned been held yet?

Who do I speak to in order to get some information and/or clarity?

Decide to ring Dr Randall’s secretary to see if she can help:

1) Am I still under Dr Randall’s care?

2) Has the MDT been convened and, if so, what was the outcome?

3) Is anyone looking at my total pathology or just at the isolated bits?

4) What does ‘urgent’ mean in this context?

I ring Cathryn, Dr Randall’s secretary to ask the questions. First of all she remembers me and my holiday 🙂 and says that she has just sent another copy of the referral letter to the appointments team. In relation to Q1, it seems that I am now in the care of Dr Murray, a consultant in Endocrinology. However she is very helpful (and I tell her so) in emailng Dr Randall (who is in clinic at the time) to ask his views on Qs 2 & 3 as she can find no reference to an MDT although she thinks that it may have been held and that is where the referral to endo came from. She promises to ring me back tomorrow.

Well, given that:

a) I suspect that I am going to have  a long-term relationship with my GP about this problem and

b) I would like some explanation about the blood results and how the system works (all these different doctors)

I thought I would ring to make an appointment with my GP.

OK, he is on holiday and no I do not want to talk to anyone else. But why can I not make an appointment for when he gets back!? The system seems to be designed for acute not chronic patients.

Hacked off but resigned to ringing at 0800 on the morning he gets back from jollidays.

Two letters – yesterday and today.

Today’s is ‘just’ the replacement ‘adult’ letter that I mentioned earlier – although some acknowledgement or apology for their earlier mistake would have been valued.

Yesterday’s, a copy of a letter they wrote to my GP (Dr Young – not the one who gave me the news originally) contains the results of my blood tests with an indication that these will be addressed when I attend the Pituitary/Endocrinology Clinic. I still do not have that appointment, although the lack of urgency is reassuring. For the record:

Testosterone                        – “low at 3.3”

Human Growth Hormone     – “less than .1”

Insulin light growth factor*    – normal

FH and LHM prolactin and thyroid function    – “within normal limits”

Oh, and yet another doctor – I have now started a list of the various practitioners with whom I have had contact…”My List of Doctors”

I’m feeling fine and AFAIK this thing remains asymptomatic.

Going to have to ask about this as I cannot find any references on Google to “Insulin light growth factor”. There are references to “…LIKE…” however. Surely spelling mistakes don’t occur in such important documents.

Ten wonderful days on holiday in France at Sally & Ian Burgin’s – no thoughts of the condition, no symptoms and no disclosure because I have decided that when and if I do disclose I will want to do so when I can provide some meaningful information; until then only Suzanne and I know.

Back to a letter inviting “The Parent or Guardian of Geoffrey ….” to an appointment on 31 July. Now I was expecting an appointment on that date but they now seem to think that I am a minor. So, let’s ring for clarification – apparently my call is “..important to us”; but not so important that they manage to answer in less that 19 minutes!

When they finally do answer I simply express surprise that they have sent a ‘Parent or Guardian’ letter to a 64 year old! My real concern is that I turn up to find that as an adult I would be referred to a different speciality/clinic. “They have probably just picked up the wrong letter code” is the answer and the call handler asks if I would like to receive a new ‘adult’ letter; I say yes please and she just rings off with out a thank you or an OK… Not sure if my call really is all that important to them!

As requested when Suzanne took a message for me last week (about a referral to the Pituitary Clinic), when I heard nothing after 7 days I rang to ask what was going on. “Well Mr Roberts, we have no request for an appointment in our system” says the helpful agent on the Bookings Service phone line. Hmmm….thinks I.

So what next, I guess that ringing  the Dr. who asked for the  appointment, so I ask under which consultant’s care I am registered, having got three names (Drs Jung, Yoga and Parnell). I ring Dr Randall’s secretary to be told I have been discharged from his care (I never even knew I had been in his care, nobody having mentioned that name until I rang the appointments people!) as my condition is not to do with neurology…

I am, however given another name (Dr     )

I guess that I am a bit hacked off at the lack of communication between the hospital and myself about all of this – isn’t it easy enough to give me a letter or send me an email as I am handed off from one department to another? What I have learned is the need to ask more clearly with whom I am dealing – NOTE TO SELF.

YO! Kathryn, Dr Randall’s secretary has rung back – she has spoken to Dr and he has said that it is fine for me to go on holiday and that there is no problem in delaying the appointment until I get back 🙂

Off to get Euros!

I woke this morning listening to Radio 4. Nothing unusual about that, what was unusual is that I very quickly got fed up of listening to a piece on the tragedy of one woman whose husband clearly received miserable care from the hospital he was being ‘cared for’ some 5 years ago. Rather than listen to the litany of mistakes that the hospital made 5 years ago, I got up thinking of two reasons why I did not want to listen:

One – let it go. It must serve you in some way to keep on about it after 5 years, and might (I do not know) it be better to move on?

Two – how does it help others who have to go into hospital to be reminded that mistakes do happen. Isn’t this simply going to reinforce fears and how does that help today’s patients?

Still not heard about this ’emergency referral’ so I will be ringing them today to find out what is going on. In my head, it is not so much of an ’emergency’ that I cannot go to France for 10 days if over a week after the message I have heard nothing. So at 1645 I thought I would ring to see what was happening – “Sorry but this department is closed”! About time the NHS started working normal office hours, let alone 24/7. Sorry that my condition is with me all day every day 🙁

I’m also finding myself struggling to hold back my growing intolerance of others with challenges that seem much larger to them than they do to me!

Having come home on something of a cloud yesterday afternoon, it has turned darker.

Phone message this morning advising that I have been submitted for an urgent referral to the pituitary clinic. This apparently has been prompted by the word ‘large’ in relation to this adenoma.

The message is that appointments are hard to get, should arrive within 7-14 days and that we should chase them up if we hear nothing. Cancelling the holiday threatens! Now THAT hacks me off, partly because I really want to go to France and partly because it will be difficult to avoid disclosing the situation to those affected by the cancellation (Sally & Ian, Lucy, Will primarily).

I can feel a massive dip in energy, enthusiasm as a consequence of this message. My heart is racing, Suzanne admits to having been in tears, and actually we are no further forward than we were yesterday… This is not about being brave, it is (at least for now) recognising that it is all out of my hands and there is little point in fretting – perhaps that is what is meant by ‘being brave’?

For some reason I now also feel able to read up on this condition, so watch out the internet! Now is the time to be prepared with questions….thank you to:

http://www.macmillan.org.uk/information-and-support/brain-tumours/types-of-brain-tumour/pituitary-tumours.html#tcm:9-155645

http://www.mayoclinic.org/diseases-conditions/pituitary-tumors/basics/definition/con-20028814

http://pituitary.ucla.edu/body.cfm?id=47

http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/pituitary_center/pituitary-tumor/treatment/surgery.html

https://www.nice.org.uk/guidance/ipg32/resources/ipg32-endoscopic-transsphenoidal-pituitary-adenoma-resection-understanding-nice-guidance2

http://www.pituitary.org.uk/

Having been to see the specialist (although he was not there!), and my stress/worry/fear levels having subsided to about 6/10 from the 12/10 they had been on occasions over the last week, I have decided to continue with this occasional blog/diary about my experiences living with a suspect pituitary (details later).

This is going to be a mixture of personal reflections and observations (rational), feelings (affect) and observations on the performance of our wonderful NHS.

First of all, thanks to the wonderful Suzanne. She gave me a chance to talk about this last week, she dug out loads of stuff from the internet and kept it to herself when I said that I wanted to see the specialist before finding out more myself, and she used that research to help me question and clarify during the consultation today. I cannot imagine how she has felt during the last week or so, but she has rarely shown her concern and for that I love her even more.

Firstly, and most importantly for the next few weeks, it turns out that pituitary adenomas are not usually either aggressive or metastatic and that there are treatment options.

I AM NOT GOING TO DIE IN THE NEAR FUTURE! 🙂

However, there are a series of complications about which I need to be aware, possibly the most important being that an adenoma can cause pressure on the optic nerve (which just happens to pass very close to the pituitary). This can threaten sight and so one of the first tests I am lined up for is from the optician who will test my peripheral vision. Suzanne also says that I have to watch out for any increase in fluid intake or peeing, because that might suggest onset of diabetes.

I am sure that there will be a lot more, and that can wait until after the blood tests (six tubes today – giving blood could have taken less!) and Multi Disciplinary Team meeting (MDT) who will apparently come together to review my details and decide what to do next. So, nothing to do but wait for the moment…

So what about the NHS? I am pretty ambivalent at the moment. On the one hand I got a quick referral (7 days), my bloods were taken while I waited and the young registrar was as reassuring as I needed; on the other hand the consultant I was scheduled to see was not there and so I saw a very helpful registrar instead, she was as forthcoming as possible without knowing any bloods or seeing the scan that started all this fuss. The scan, the scan. Surely it could have been available , surely the single paragraph from BioBank to my GP should have been with my referral papers, surely the Registrar should not have had to ask me if I had a number for Biobank (and come to that surely the doctor who saw me at my GPs should have known about Biobank – I had to explain to her what it was all about). Now I know that Biobank is fundamentally a research instrument, and I am genuinely surprised that the two medics I have seen did not know about it.

And how am I feeling? Relieved, for one. The line in capitals above is not hype – I genuinely went along this afternoon as prepared as I could be for being given a ‘death sentence’. Now I know we are far from our of the woods yet, and I also believe that if the prognosis had been  massively bad I would not be here writing this blog. So fingers crossed and I am nearly ready to start my own research.

One question remains – who (if anyone) to tell? I am tempted to keep it between Suzanne and I at least until we get the results of the test and the MDT. I can’t see how it helps others to know, it helps me enough that I can share with Suzanne and I really don’t want people who can do nothing about my situation to be worrying. Perhaps the right time is when I can be clear about the diagnosis/prognosis?

Well, the appointment arrived today – next Monday, 8th June 2015 is set to be a seminal day in my life and those who I love.

Still no point in fretting, although I recognise that I am becoming more sensitive to every little ache or pain!

Suzanne will be coming, although we have not talked about it. I don’t see the point in hypothesising and speculation, let’s deal with whatever the reality turns out to be