allaboutGeoff

Well, now I have got to the right place things seem to be moving faster. I got a phone call this afternoon offering an MRI scan tomorrow (Sunday) and a letter in the post setting up the dynamic blood testing (Glucagon Stimulation Test) that was mentioned to me – the latter on Friday 7th (one week away). So, by the time I go to my next appointment with the consultant endocrinologist they should have had a chance to discuss my tests and be able to discuss options with me.

With the identification of a slight (?) reduction in optic field and some more research I have been doing, this looks increasingly like an operation to remove at least most of the adenoma. But let’s wait and see.

http://press.endocrine.org/doi/full/10.1210/jc.2010-1048

Off to Leeds today for a session with the opthalmologist to map my visual field. An interesting experience, with interesting results.

A straightforward task, to identify when a moving dot first appears in my visual field, repeated four  times with different sizes and brightnesses of dot. First one eye and then the other. I reckon that I had sussed out the result before seeing the plots on screen. A slight reduction of the field in the upper left/right quadrants, indicating that there was slight pressure on the optic nerve already.

The lady I saw had nothing else to say except that they would have to tell DVLA who would be slow in deciding whether or not it was significant enough to stop me driving. Now THAT bothers me, not being able to drive would seriously inhibit my activities. Still, nothing I can do but sit and wait.

So, this morning we turn up for an appointment at the endocrinology clinic, ostensibly for an appointment with Dr Murray who of course we do not see. Instead we see his registrar, Dr Rob King, who is personable and takes the necessary time to explain the position and answer our questions. The urine sample so carefully collected this morning was not needed and was discarded (apparently they always ask for one on the appointment letter).

Prior to seeing Dr King, I was again weighed and had my height measured – maybe it has changed since my initial visit and maybe they simply didn’t know that it had already been done. I was a little disappointed with the nurse/technician who met me, she seemed to be simply going through the process and had about as much empathy and rapport as a brick wall.

To cut a long story short, the blood tests for which I received results a few weeks ago show that although there is nothing to worry about, some of the tests were at the bottom end of the normal range and so they want to do what they call dynamic blood testing which will involve going in for a day, having early morning blood tests, having an injection to stimulate pituitary action and then following my bloods during the day.

He is also scheduled me for a repeat MRI to look more closely at the pituitary, following which an MDT will be held. I asked whether it would be normal or possible to attend the MDT and essentially got no for an answer on the basis that these meetings consider several different patients. Fair enough.

He repeated some of the gross symptomatic tests – skin tone and temperature, visual field and then went on to a testicular examination because apparently one symptom of low testosterone can be a reduction in size of the testis and they may become  spongy. I have certainly not noticed either of these symptoms and he seemed happy with the examination.

So, I am now lined up for more blood, another MRI and ophthalmology wizzair repeat appointment at the clinic in 4 to 6 weeks time. By which time the MDT should have met and we will have something more concrete to discuss.

We talked briefly about the mortality associated with these adenomas. He confirmed my GP’s assertion that many people died with them rather than of them. He also explained that if there was any sign of it starting to affect the visual field that would be one of their real concerns.

I asked for explanation of the letter containing my blood results, expressing concern that the results had no units against them, that we had not been able to find any reference anywhere to “insulin light growth factor” and did not know what FH and LHM stood for. We explained that with a Health Sciences degree and a lifetime as a practising scientist behind us, we could understand the jargon etc and so wanted to be clear. Well, it should have said “insulin LIKE growth factor”, FSH (follicle stimulating hormone) and LH (luteinising hormone). I am NOT impressed with this – surely ‘they’ can get such important things right – nobody, even highly qualified practitioners, should have to ‘interpret’ incorrectly reported results? I think this might lead to a letter to the hospital.

I am still working on the basis that if this was really urgent and our life threatening they would be moving considerably faster than they are. Hopefully it will, at least initially, be a monitor situation but if they have to operate then they have to operate. I do not feel at all stressed about this situation, slightly hacked off until today when at last I manage to speak with somebody who could engage with me. I think Suzanne is actually more concerned that I am and of course with her Health Sciences degree she has probably got more information about the whole situation and its potential implications. The more you know the more you can worry about what might happen.

I am still of the opinion that there is no need to share this with anyone else. Anyone else we tell is likely to have much less information about the situation and we do and I can’t see the point, at this stage, in burdening anyone else with potential worries about the long term implications. Put present my thoughts are to wait for the next clinic appointments and, if we have a way forward, at that point tell people what is going on.

Well, after all these weeks I have finally been ‘offered’ an appointment with Dr Murray, in the endocrinology clinic. I got  a phone call on Wednesday from his secretary (Katerina) and a letter on Friday morning.

Somewhat surprisingly, I sense no real feelings about this. Perhaps after all this waiting I have, rightly or wrongly, rationalised the situation as being either “time for an operation” or “we will monitor and see what happens”. I would prefer the latter – why risk an operation unless there is an imminent danger?

Anyway, Suzanne has asked to come with me so on Tuesday 28th July at 0959 I will turn up at the Endocrinology Clinic with my urine sample and see what he has to say.

Maybe I will feel like disclosing the situation more widely than just Suzanne after that, although I will need to think hard about the value of such disclosure. If it is asymptomatic and a ‘monitor’ decision then how does it help others to know – so far as I can see they will not be able to help and my condition will not be eased, on the other hand they might worry unnecessarily being less aware of the facts than I am. If it is an ‘operate’ decision then fair enough, as I will be having a major operation with several weeks’ of convalescence. We will see.

So, I haven’t written anything for a week mostly because nothing substantive has happened.

Although I had an appointment with my normal GP in 2 weeks’ time, I decided to go back sooner to the doctor who had given me the news in early June and have a chat with her about what was going on and whether or not she could expedite anything (as had been suggested by Dr Parnell’s secretary).

I explained to Dr Sweeney that I was concerned at:

• the lack of communication between Leeds hospital and myself,
• that I was unsure whether or not anyone over the was looking at my total pathology or simply dealing with individual issues,
• that after mention of the word ‘urgent’ on more than one occasion I was surprised to find myself in a queue with a 6 to 11 week wait for an appointment at the endocrinology clinic
• and that I had not been able to get straight answers (or indeed any answers) to whether or not my scan had been received by the hospital and whether or not and MDT had been held to consider my case.

Dr Sweeney explained that she had had a couple of letters from the hospital, on looking at these I found that I haven’t been copied in and she happily gave me copies. There was nothing new in these letters –  the original referral from Dr Yoga to endocrinology and ophthalmologists and a copy of a letter from Dr Randall asking for an endocrinology  appointment. I’m disappointed that the hospital don’t find it appropriate to copy me in on this correspondence and will mention this in due course.

Dr Sweeney seems to share my surprise at what was not going on and undertook to chase up the referral in the hope of getting a firm appointments for endocrinology sooner rather than later. We will see.

Now, one week after seeing Dr Sweeney I have still heard nothing. The one consolation that I have is the conversation with Dr Sweeney in which she pointed out that without the Biobank scan we might never have known about this adenoma and that, as with loads of women with breast cancer and loads of men with prostate cancer, I might well die from other causes without the adenoma ever being a problem. Nonetheless, she understood my concern to get expert opinion.

I think one of the things that concerns me most about this is that nobody is telling me anything, almost everything I know I have found out either by searching on the Internet or by asking specific questions on the rare occasions I ever get to see anybody. Nobody even sat me down and explained what adenoma was and were it not for my own efforts on the Internet I don’t think I would have found out that the condition is not immediately life-threatening, as I had suspected when seeing the look on Dr Sweeney’s face when she first told me. This is really not good enough. Surely someone should take responsibility in these circumstances but sitting patients down and ensuring that they know the basics about the condition that is being diagnosed?

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!