May 2015 - two whole years!

Yes, you heard it right. Two whole years since my pituitary tumour was removed, the 28th May 2013. So what then, does two years mean anything?

No not really - as time whizzes by the memories of all but the most horrible bits fade away, the times when I was less than 100%, those days/weeks leading up to diagnosis are a blur and only the most memorable spikes remain. In chronological order I think it boils down to this:

(nothing much pre-hospital at all, it just hadn't sunk in or seemed real)

• Sitting with Dr Kar, him telling me it was definitely a pituitary tumour, showing me an MRI scan of my head and pointing to the mass. Saying it would be best if it were removed.....he'd refer me to a neurosurgeon
• Sitting on the hospital bed being admitted, going through the consent form with the registrar and the things that could in theory go wrong with the operation
• Being given a 'nil by mouth' sign by my bed (advanced notice the operation was a reality)
• Being wheeled down a corridor in my bed to the operation
• The anaesthetists trying to get a line in me to put me out prior to the operation
• Waking up after the operation and looking into the face of the nurse in the recovery room (forgotten the name, will never forget the face)
• Finding I had about 5 cannula's hanging out of my body
• Leaving hospital (which was good, but scary)
• Getting diabetes insipidus (bad)
• Getting admitted to hospital a second time with an adrenal crisis (also bad)
• Waking up with an oedema in my legs (definitely not good)
• Sitting back in my living room after the 2nd hospital visit feeling the weakest I have ever felt in my life
• Getting the results of my short Synacthen test confirming I didn't make enough Cortisol and probably never would
• End of 2013, finally feeling that my life was back on track, feeling fitter than I'd felt in ages and hormones balanced (good!)

So there you have it, the most memorable moments laid out. I've blogged about all of them at some point - but now? Well to be honest I still think of myself as one of the lucky ones, I take two hormone replacements and am fit and healthy. I don't have any complications from taking the hormones that I take, and I haven't got any other long term conditions right now and long may that continue.

I do still have my moments of annoyance with my condition and rebellion but I suppose that is only natural.

So the summary of all that is:

• A lot of 'stuff' happened
• It was a long time ago now, water under the bridge
• The NHS totally rocks!
• I've come a long way and I've good health and fitness
• It could be a whole lot worse!

Cheers, Carl

April 2015 - So, I can see my medical records now

I've been ruminating on a blog about this topic for a few weeks. Suddenly a few weeks ago, I noticed something online, someone had given me access to lots of my own data, someone who I hadn't expected to, my GP surgery.

It was only when the subject came up on Twitter that I realised why, because the government had given a commitment that all GP surgeries must provide online access to patients medical records, with an original deadline of the end of March 2015....although this seems to have slipped somewhat. I was unaware of this move and I'm sure many citizens are also unaware that this move was afoot. My local GP surgery uses a system called EMIS and I already use it to order repeat medications and book doctors appointments. I went online to order some meds, and noticed this new entry "view your medical records". I clicked into it and was amazed to see the level of data on display, see screenshot below:

As you can see I get access to pretty much everything there is to know about me. The most interesting reading was the 'recent documents', as this contained loads of referral letters back and forth between my doctors and various consultants during 2013/2014 when my Pituitary issue was being resolved. All the correspondence between my GP and Endocrinologist I had already seen because he kindly copies me in on everything, but the same cannot be said for all, and there was plenty I had not seen before.

So what then, I can see all this data, what am I going to do with it? On the one hand it feels right that I should have access to this information, it is MINE after all. But had I not had all my health issues in the last couple of years would I really be that bothered, probably not. Some of the data available is beyond me anyway, I can view blood test results from a full blood count taken a while back, the level of detail is staggering and I never even heard of some of the data contained within that report - Haematocrit, Neutrophil, Lymphocyte.....never heard of them. So yes, the data is there, but unless I have clinical training I can't really do anything with it. Sure I can compare one against the other and see a trend, but that's about it. Also some of the results do have a graphical indicator showing a normal range and if you fall outside that range the word 'abnormal' appears, but again, do I panic when I see that, or in fact is my 'abnormal' totally normal. So I can see that GP surgeries may in fact be a bit worried that providing all this extra information may result in a flood of phone calls from patients asking what their new found data means. The reality is that you still need an 'expert' to help you understand how the numbers are relevant to you and in fact even if the number is "right" or "wrong", this may not be reflected in your well-being. If you are feeling well as a result of some treatment, the hard numbers may only tell part of the story to how a clinician may prescribe further treatment.

An example is my recent Testosterone blood test. I had a blood test and injection in January and then another one this month, the first at a 12 week gap between injections and the most recent at 10 weeks, because after the 12 week my blood test showed my Testosterone was quite low in the 'normal' range, so we tried a 10 week period. The overall graph shows I am still on the 'low normal' range, but the pure numbers show that the levels of Testosterone in the blood are raised to what they were, so in a purely analytical sense, the 10 week versus 12 week scenario has shown an improvement. But what I will still need help with is interpreting what this means from a clinical point of view. Does this difference have any significant impact on my long term health, where in that 'normal' range should I be, or in fact does it even matter. I am fairly sure that when I am low on Testosterone I get more muscle cramps, and I believe that I have had less of them in this 10 week period, than previously. Otherwise, I'm not sure I'd notice any well-being difference between the two doses.

I like being informed when I speak to doctors, that can only be a good thing for me, but I wonder how much it complicates the patient/doctor conversation? I wonder what doctors really think of anyone like me that could in theory walk into my next appoint with lots of print-out's and questions?! Do they prefer well informed patients, or uninformed patients.....

The 'recent consultations' area of the website does contain dates of when you saw a doctor, but no detail about what or any sight of notes that the doctor may have written. This is very useful as a reminder as to when you saw a doctor for a certain issue, I like it. I'm not bothered that very little detail is shown, it is probably for the best I think.

The other point that occurs is that it feels pretty weird is the speed of which information is available. How many times have you been told by your GP surgery to ring back in a week when your blood test results will be back. In fact the blood is sent to the lab on the same day and is processed very quickly in most cases, overnight I believe. I had my recent blood test at 11am, and I could view part of my blood test result at 9am the follow day online! This is a real bonus. As it happens the Testosterone part of the test did take nearly a week to appear online, but still. It also feels a bit big-headed to be able to see this information and potentially be able to share it with your consultant before they've even realised it is there. I feel empowered, but also hesitant.

As for the other info that is available, lots of useful stuff. I can check when I had my last flu jab or tetanus jab, check what allergies are registered against me and potentially spot any errors and correct them before any issues arise. This is definitely a good thing.

So overall then, a very good initiative. Slightly odd that it was turned on by my GP surgery without any fanfare or notice, just slipped under the door quietly - if I didn't go into my online access very often I'd never have known it was there. Equally no advice on how to interpret or use this information. Finally the ever present "is it safe having all this data online" question. Well that doesn't really bother me, yes of course someone could hack into the information or guess my log-in and password....but really, is it important to someone to know my blood test results or that I had a pituitary tumour removed in 2013.....not really. If someone wants to snoop around my patient records, good luck to them! 

17/04/2015 - Just a quick edit, I found an article online that shows which bits of the patient record can be chosen to be displayed, clearly someone ticked all my boxes, but a surgery could choose to display a lot less:

http://www.emisnug.org.uk/article/patient-online-guide-emis-web-users-part-2-enabling-patient-access-medical-record-viewer

From a pituitary point of view, I can discuss all this with my consultant when I next see him in July. And if you're reading this now Dr Kar, I probably won't walk with lots of print-outs of my blood test results.....but may be armed with a few more questions than I otherwise might have had :-)

April 2015 - Electroretinography

So today, off I went to Southampton General Hospital, Orthoptics department for a specialist eye test.

The very first thing to note, is don't entirely trust what Dr Google tells you! Inevitably when you have a procedure coming up it is human nature to want to know what to expect. Years ago this meant trying to track down someone else who has had the procedure, but nowadays just fire up your computer and all the information is at your fingertips. But as it happens I had viewed Electroretinography video's and information for the American market, and things aren't done quite the same over here in the UK.

In America the electrodes placed on your eye are contained in a kind of contact lens and an eye speculum. In order to do this the surface of your eye is anaesthetised. But over here, all that happens is a very thin wire is placed on the eye and fastened at either side, you hardly even know it is there, it just feels slightly itchy/scratchy and I forgot about it after a while.

So what happens is that you have a couple of wires stuck onto the back of your head and onto the forehead. The lights are turned off and you then look at a TV with various flashing chequerboard images shown, but you have to look at a red dot in the middle of the screen. Alternate versions are shown and initially to both eyes then a patch over each eye. Then the electrodes are placed on the eyes and the tests repeated. Then at the end, a bright strobing light is shone into each eye, first a white light, then a blue light, then a very bright white light. I wasn't asked if I was an epileptic! All in all it is a straight forward set of tests.

What I do find odd, is having had the test in its UK form, being very non-invasive, why the Americans do things differently....different technology but the same outcome? I would assume so, is one approach better than the other?

All this data is fed through the receivers stuck to my head into a computer which interprets what my eyes have seen. I assume there is an expected level of information being received through the optic nerve and I will be measured against that, as well as each eye being measured against the other. I didn't see the computer screen the clinician was working on, but my wife tells me the wavy lines were pretty unintelligible to her. So once the data has been unscrambled a report will go to my eye consultant, who I am seeing next month. Let's wait and see what that tells me.

Overall the tests were easy to sit through and barely uncomfortable. The flashing images were a bit mesmerising and sent the eyes a bit wobbly after a while, but no lasting effect. Another test to add to the few I've had over the last couple of years.

A techie side note, I noticed the TV used was an old cathode ray tube (CRT) version, very old looking technology. This at the moment is necessary apparently because the response times of old CRT telly's is very quick, and it is necessary to sync up the response times of the brain & optic nerve with the image being displayed. Using modern flat screen LCD/LED monitors isn't currently possible because their response times aren't quick enough right now. The scientist who did my test said she doesn't know what they'll do when their screens break as they are really hard to get hold of now, because no-one makes them any more! So if you have any old telly's lying around in the garage, don't take them down the tip, donate them to your local NHS Electroretinography unit (only joking!)

April 2015 - Don't forget to take those pills!

Hiya, quick update from me, can't believe it is April already....not too far from two years since diagnosis of the pituitary tumour.

Generally health is still very good, the Hydrocortisone tablets and Testosterone injections are working well and my only ongoing concern is the eye fuzziness and the slightly tingly left leg. On the subject of the eye, I now have an appointment in the diary for Electrodiagnostic tests at Southampton General Hospital to hopefully give the experts a clue as to what is going on with my optic nerve. They are obviously fairly unusual as although they are described in the letter from the hospital as 'routine', they are also 'highly specialised' and are carried out by a 'clinical vision scientist'. So they should be interesting if nothing else.

As for the tingly leg, that is still settled to a base level. Interestingly I now have online access to my patient health records via my doctors surgery. In the letter from the consultant to my doctor, which I never saw a copy of, it said that I had no nerve damage but some minor impingement and that I would probably have "spontaneous recovery in due course". I look forward to that!

The real reason for this update though is a bit embarrassing, I forgot to take my Hydrocortisone (HC) pill on Sunday evening....for the first time ever I think. Now, although I don't really think about it, if I were to stop taking my HC pills I would in due course die. I'm not intending to test this out of course, but on Easter Sunday I did forget to take my 6pm dose. My excuse was that it was an unusual day where my routine was upset from normal, I didn't realise I had forgotten it until 1pm on Easter Monday. When I woke up on Monday I had a really bad headache and felt completely washed out. I don't suffer headache's very often so it was a bit unusual, so I just took some paracetamol and got on with my day, but I was really lacking energy. Then at lunchtime, I went to take my usual HC dose and as soon as I opened the packet I knew the amount was wrong (I used a different packet for my breakfast dose) and suddenly it dawned on me as to why I'd felt so rough all morning.

So on the the one hand, no harm done, but on the other hand a bit of an eye opener. Even by lunchtime I had bucked up considerably, still had a headache but energy levels were much better. By mid afternoon I was absolutely fine....but all that because I missed 5mg of HC (I can't think of any other reason for it). So just in case there was any doubt, of course there isn't, that I need these tablets there it is. I was a bit shocked that it had such an effect on me, probably exacerbated by having had quite a busy day on Sunday. 

In 2 years it is the first time I have missed a dose, so I can't be too hard on myself. But it is a timely reminder not to take the HC for granted, it does keep me healthy and alive and my pill taking is enough of a habit that even though I missed a dose, I did realise in the end. So I've duly slapped myself on the wrist.

As I said at the start of this blog entry, I am coming up to two years since diagnosis and tumour removal, so I'm wondering what I could add here to help newly diagnosed pituitary patients? Other than reminding people (in the UK anyway) about the wonderful services of www.pituitary.org.uk who have a wealth of advice on their website as well as a very well respected Endocrine Nurse helpline.

March 2015 - Update and NHS musings

Hello there, not been around for a while, so time for a bit of an update.

I was chatting to someone at work recently about my condition and how it affects me, it has been a while since I have taken someone through all the things I've been through and how a lack of Cortisol shapes my life. It makes you rethink some of the aspects of life and how I now come to accept the way I am and just adapt my life. It's what anyone would do. But it also made me think how lucky people are with a working endocrine system who just make the Cortisol they need.

I've noticed this a bit lately because my wife and I have been doing a lot of chasing and hard work trying to sort my dad out with a nursing home, more on that later. But the stress of juggling all this along with day to day life, and work has taken its toll. The week before last I had a weeks holiday and it was spent chasing all over the place. For a person who makes their own Cortisol their body just adapts and makes what hormones it needs, of course everyone gets physically and mentally tired during hard work and stress, but without that surge of Cortisol I get an extra 'foggy' feeling that is hard to describe. I get a fixed dose of Cortisol by taking Hydrocortisone tablets and once that dose runs out, it has run out and my body isn't able to make any more. Most of the time I can manage it by taking a tablet a bit early and having a quick rest, but this isn't always convenient, and equally I can't just up the dosage willy nilly. I have done on occasion when I know in advance I am doing something particularly heavy going, like last summer when I was doing a lot of physical gardening....certainly a small extra dose does work. But I hadn't expected the mental stress of sorting my dad out to have the same effect. But you live and learn....it is a bit of a pain in the bum, but that is just how I am made up now.

On the subject of dad, it isn't an enviable task to have to undertake. To have someone that has always been independent and lived on his own, even after mum died, to then have to consider putting him into a care home. He had two strokes (blood clots) on boxing day 2014 and was admitted to QA Hospital in Portsmouth and hopefully this Tuesday 17th March 2015, he will be discharged to a nursing home where he may end up permanently. He also has Parkinsonism (like Parkinson's Disease, but with added complications) and the double-whammy that these two conditions have, along with a small dose of dementia means that Dad cannot go home and live on his own. 

The care in the stroke wards in QAH, latterly Ward F3, has been exemplary (the whole team, nursing, O/T, P/T etc.). The team there are specialists in caring for people with strokes and they really seemed to know what they were doing. The experience wasn't 100% perfect and we had a bit of a hiccup with the discharge planning team....this is where it is so hard as a family with someone in hospital. The patient gets to a point where they don't need to be in hospital from a medical point of view, but the patient cannot go home and needs a care home. The nurses won't kick your relative out on the street, but at the same time they have massive pressure to free up the bed for the next patient. It is an incompatible set of stresses. We had an assessment on dad from the discharge planning team that we didn't feel was entirely fair, and sure enough the multi-disciplinary team went away and re-assessed him. But at that point, the firm guidance was dad needed a "care home". So we duly went off and viewed loads, and got our preferred one to assess dad to make sure they could meet his needs. They decided they could not, because of his mobility.

Then in the midst of this, dad caught Norovirus and this set him back a couple of weeks because no care home could assess him during this time, and in any case the hospital could not discharge him. But when he was well enough again, the pressure was once again on to discharge him, and the planning team were on our case to find a home. This time the firm guidance was that he needed a "nursing home", because his mobility needs were so variable, on a good day he was care home, on a bad day (unable to move on his own) he was nursing home. So off we went to view loads of suitable homes, and we've found one we love, and hopefully come Tuesday so will dad. Some of the nursing homes we viewed were a bit grim.....seeing the people there in such a poor state of health, not nice. The other aspect is money, £1,000 per week for your care, that is serious money. Bang goes dad's savings and probably his house value too. But at least the lovely place we've found him, will mean he gets to spend his money on somewhere lovely that will hopefully look after him well and his last (no idea how many) years will be spent in comfort.

So nursing care on F3, brilliant, discharge planning, not perfect. Difficult pressures to deal with though (need the bed, but can't just kick the patient out), but hopefully we weren't too difficult a family to deal with.

Back to me briefly, other than Cortisol shortages everything else is still on track. I am still outstanding some tests on my left eye, as mentioned in my last blog. I have kind of blocked out the blurry eye thing, in that if I don't think about it then I don't notice it. But it is still there. My Endocrinologist doesn't feel confident that it is pituitary tumour related, because that damage should have been evident straight after the operation....but I don't think it was. So we will have to wait and see what the tests show, whenever they are. I've had an endocrine checkup a few weeks ago, and that came up all 'green', so that is good. So some eye tests and then another MRI scan to check tumour status to come.

That's me for a bit.....all the best :-)

February 2015 - Sometimes you just know

Well, as the title says, this time when something wasn't quite right I had a suspicion as to what the cause might be.

I have recently mentioned the fuzzy eyesight in my left eye, and my first thought was it was related to optic nerve damage due to the pituitary tumour or its removal. I first noticed that something wasn't right last year after I had new glasses in about September. Usually, you get new glasses and within a few days your eyes have adjusted and you have good eyesight again. However, this time after two weeks my left eye was still playing up. My hope was that the optician had got the prescription wrong, or tested my eyes wrongly, but that is pretty rare so my doubts were already on high alert.

After a retest by two opticians, a referral was made to my doctor who spoke to me and referred me to an eye specialist, the same specialist who saw me when I was reporting weird eyesight back in 2008....(I've still not quite forgiven him for not spotting the tumour back then) which was undoubtedly tumour related, but we didn't know that at the time.

So last week I saw Mr Evans the eye specialist again, who did various tests and reported that the nerve in my left eye was "paler" than the other one, which I assume means it has less blood flow in it than the other. I need to go for some nerve conduction tests in Southampton to input some kind of images into my eyes and measure with electrodes on my head nerve impulses responses. Mr Evans was pretty sure of the outcome though, permanent damage to the nerve.

The one piece of good news, was that he does not think that it is something that will degenerate with time, that it is damage that has happened and it will stay as it is....although he couldn't say for sure....that is my biggest worry right now.

I can't change what has happened, but all I can hope for is that Mr Evans is right, and that my glasses prescription can be upped a bit so the vision can be improved a bit more than what it is now. I so wished that the optician had been wrong all along and all that was required was a different set of glasses, but somehow I just knew it was too much of a coincidence having had left eye problems with the tumour that further left eye problems (albeit a different kind of problem) was just bound to be tumour related again.

So I await more tests, which will probably take a while to come along in the mean time I will do my best to ignore the fuzziness. Most of the time I don't notice it, it is only when I think about it that I notice it. The brain is very good at making the best out of the two eyes at its disposal.

Hey-ho.

January 2015 - Pituitary bloggery update

For those of you interested in the pituitary side of things, I thought I'd update you on the following blog post I did last May (2014), which in turn was the one year anniversary of my Pituitary Adenoma removal.

http://chpituitarytumourblog.blogspot.co.uk/2014/05/may-2014-anniversary-of-my-pituitary.html

In the above blog post, I posted some updates on things that had started or stopped since my Pituitary operation. I have been reflecting on these, and whether they still apply, so I thought I'd do an update for any 'pituitary' followers who might be interested. As a reminder, following my operation, I am short of both Cortisol and Testosterone and take replacements for both of these hormones. I am due a checkup next month with Dr. Kar, but all seems to be going well. So here goes with the update (I'll follow the same order as in the above blog post, for full details of the items below, refer back to earlier post):

Things that stopped after the operation
Black eyes
Still gone, not had the black eyes since the operation

Muscle spasms
Also still gone, in fact thinking back on this one they were very prevalent in the latter stages prior to my operation. This must be down to one hormone level or the other being correct now. Never had anything like it since.

Hip ache
I don't get night-time hip ache at all now, in fact I'm much more comfortable in bed at nights....notwithstanding the numb/tingly leg I get now that isn't related to Pituitary stuff at all

Fainting/sweating when exercising
Definitely gone, and hopefully gone for good. Much fitter, able to push myself physically and mentally now....definitely a hormone thing and definitely gone!

Funny vision
Well.....the original issue of patches missing from my vision, definitely gone. However, I have got fuzzy vision in my left eye and I have an eye specialist appointment later in January to start investigating this. I'm not sure whether it is just degeneration of my eyesight that would have happened anyway, or whether it is Pituitary related. I probably won't find out for a while either, will have to wait and see. I have a slight concern that it is optic nerve damage due to the tumour, but who knows....

Pale complexion
Gone. In fact frequently rosy cheeked (my facial cheeks that is!), and rosy cheeked is not a description you used to be able to give me.

Dry skin
This is a lot better, although I do still get a bit dry on my face. I also have much better skin since I stopped rubbing in the Testosterone gel, which used to dry my skin horribly.

Hayfever
Well I've been through my 2nd summer since the operation, and can definitely say it is a lot better. I had slightly itchy eyes during the worst pollen times, but not much of a runny nose. Definitely a hormone thing, fixed!

Being cold
Not any more, a much warmer person - I think this one is a combination of the right Cortisol and Testosterone. If anything, I am prone to being a touch too warm at times.

Mouth ulcers
Bizarre really, for so many years I couldn't bit the inside of my mouth without it turning into an ulcer. Since the operation, I haven't had one single mouth ulcer, and I still bite the inside of my mouth. It is simply sore for a couple of days until the skin heals, then that's it. No more mouth ulcers.

Things that started after the operation
Taste
My tastes did change after the operation and have stayed constant in that regard. Perhaps a bit more sugar-centric, love the fruit and beer/cider. Who knows why, but there you go.

Fingernails
These are definitely in much better condition now than before the operation...and my toenails. Must be a hormone balance thing.

Weight
Until relatively recently I had put on half a stone to my previous normal weight, and was 11 stone for most of 2014. However, in the last couple of months it has dropped a bit, and is about 10 and three quarter stone. I haven't been dieting, so not sure what's caused it. In any case, it isn't anything to worry about, it is nothing drastic either way.

Diebetes Insipidus
Gone, didn't come back.

Lost sensation/tingly foot and leg

Yes, still got it. Probably got it for life. I've annoyed/damaged a nerve somewhere in my lower back and if after getting on for 2 years it isn't entirely fixed, I guess it will never be. If it doesn't get any worse, then I guess I can't complain, although of course I do from time to time.

Cramp

Hardly ever get cramp now, so that's a big tick. I guess it was a settling period after the operation that caused some sort of imbalance that caused the cramp. Or maybe, as I have become more active with walking and Pilates, perhaps I have just exercised the cramp out of my system. Who knows, but in any case, good riddance!

Nervousness

Yep, definitely gone.

Mucky nose

Well all through the summer, the nose was totally fine. But as the winter has set in, my left nostril is once again off on a bit of a drip. It is different to how it ever used to be before the operation, but manageable and not as bad as it was directly after the operation.

Hair

The hair on my head has sorted itself out now, it is still a bit greasier that it used to be, but pretty much normal hair. As for the hair on the rest of my body, well I've grown a pretty normal set of furry places now!

Summary

I consider myself to be pretty normal now. But reflecting on the above does make me think about all these little things that I would have considered normal before, but in fact were just disparate symptoms of not having the correct hormones racing around inside me.

I'll do another update in a while once I've had my blood tests and Pituitary check-up to let you know how I'm doing. I'm also due another MRI to check that pesky adenoma is still at bay too, lets hope so!