'Flu Jab!

Well, I also heard back from endocrinology yesterday; turns out that they too managed to bugger up my appointments. So the pituitary clinic appointment I was given for the 21st February was cancelled; instead, I'm going in to see the nurses for blood tests on the 28th and am being sent an appointment for early March by post. The lady at the end of the telephone thanked me for calling and alerting them to the fact I hadn't received a "clinical investigations" (what they insist on calling blood tests) appointment, as otherwise they would have booked me in for the 28th anyway and I'd have turned up on the 21st to meet a confused endocrinologist wondering why no blood test results were on the system for me.

Sigh.

So of the three disciplines who are chiefly in charge of my post pituitary surgery aftercare (endocrinology, ENT and neurosurgery), only neurosurgery managed to arrange my appointments without messing it up - although given that they epically messed up my pre-surgery appointments, they don't exactly get any gloating rights as a result.

ANYWAY.

I went to the GPs yesterday to get a new hydrocortisone prescription and get all my info up to date and get my letter signing me off work. The GP was new to me - since joining the new GP's practice last year, I've been pick'n'mixing which doctors I see, I don't really have a regular GP there - and he was very nice. He even suggested I have a 'flu jab - it's kind of late in the season now but it would definitely not be fun to have the 'flu at present. So I did! He warned that I might feel a few 'flu-y symptoms for the next day or two, but actually last night I felt really good. My boyfriend and I made pancakes for pancake day (first course: ham cheese & chive pancakes; second course: oak smoked bacon and maple syrup pancakes; third course: lemon and sugar pancakes), which were delicious. I had more energy than I have had most evenings since my surgery, which was greatly appreciated. Fingers crossed my energy levels start going up from now on!

Phone Calls Galore

Yesterday I went into the hospital to have some blood tests done - sodium levels and thyroid-stimulating hormone levels. I got the results this morning in a phone call from my endocrinologist - speedy service! - and the good news is that they're both normal and, indeed middle-of-the-normal-range. Hurrah!

My endocrinologist suggested that one of the reasons I might still be getting so tired is that my body could be effectively "crashing"; having been used to fairly high levels of thyroid hormone coursing through its veins, suddenly having lower (if more normal levels) might come as a bit of a shock. Having too much thyroid hormone (hyperthyroidism) gives symptoms similar to an excess of adrenaline, all the body's systems speed up - heartbeat, metabolism etc - while having too little thyroid hormone (hypothyroidism) is characterised by more of a "slowing down", with symptoms like fatigue being common. Happily it seems that I'm not hypothyroid, but after having been hyperthyroid for a fair while, my body may still be struggling slightly to adjust to the lower thyroid hormone levels.

I also have been back to my old tricks of chasing the bloody hospital up for appointments. I was expecting an appointment with ENT four weeks post surgery - as today is my four-week anniversary and I'd not heard anything, I called them. Apparently they were "never notified of my discharge" and consequently no appointment was booked. So I won't be seeing them until the 7th March. Endocrinology have booked me in for a clinic appointment to see the doctors, but appear to have neglected to book me in for the various blood tests I'm supposed to have before then; unfortunately they don't like having humans answer their phone, so I've finally had to leave them a message asking what's going on.

Opthalmology have gotten involved now and want to check my eyesight is ok, as pituitary surgery is carried out very close to the optic nerve and there is a risk of damage to the vision, but I've yet to arrange a date with them because, having made all these other phone calls, I am tired. And it's almost lunchtime.

The World's Most Imaginative Title: An Update

Well, I attempted to get to the hospital on Friday for the blood tests I needed, but unfortunately my endocrinologist was in meetings all morning and I couldn't get through to her. She got back to me around half two, but by then I'd walked into town and back, and I was in need of a break; there was no way I'd get to the hospital then. So, I'll try again tomorrow.

I had a nice time with my mum, who came to visit, anyway. Then yesterday a couple of friends came over for tea and cake, which was lovely! At present I can generally manage about 2 - 3 hours of being sociable before I really need a rest (the time is increased if I'm curled up on a sofa for the duration; decreased if I have to do lots of walking or consider complex philosophical problems). I don't generally nap during the day - I think the hydrocortisone I'm on keeps me awake mostly - I just need to sit down somewhere quietly and read or watch TV for an hour or so.

Also: Happy Chinese New Year! I'm off to have a delicious Chinese meal courtesy of my excellent local takeaway :D

More Blood Tests

Had a phone call from my endocrinologist today. On the 22nd January, I had blood tests done to check out my serum osmolality, which basically looked at the sodium levels in my blood. Getting the results was not so simple; I was registered as a temporary resident at my old GP's where my parents live, and the GP was not confident about interpreting the results of the test, as he does so few of them, so he faxed the results for my endocrinologist to interpret.

I never heard back from my endocrinologist, and although I thought about calling frankly I couldn't be bothered because trying to get a hold of them is always such a ridiculous faff. So I assumed no news was good news. Then they called today, to say that when the blood tests were taken, my sodium levels were a bit low. So I need to get that checked out with another blood test. It's fairly common for sodium levels to drop a bit right after this kind of surgery and then self-correct, and I don't really have any symptoms of low sodium levels, so I guess we'll have to wait and see.

The endocrinologist asked how I was feeling and whether I was "back to normal", which kind of surprised me as it's only been three weeks and two days since the surgery. I said no, which seemed to surprise her - she asked in what way, so I explained that I get tired, I'm still kind of slow and I get worn out quite easily (I occassionally get a little headache and my nose is definitely not back to normal but the tiredness is definitely the key point!). All of which seemed perfectly normal to me shortly after a major operation, and in fact I'm considerably less tired and slow than I was after my last surgery (although that is mainly because I was super pathetic last time). But she wants to check out my thyroid levels as well, in case my tiredness is a symptom of hypothyroidism; there's always a risk that, having removed the pituitary tumour producing thyroid-stimulating hormone, they've removed some of the healthy pituitary tissue as well and that therefore I've gone in the other direction and now have low, rather than high, thyroid levels.

I was a bit worried about that immediately after the phonecall, but then my boyfriend pointed out that she could well have been mixed up as to how long ago my surgery was, or that they could just be being very cautious. Because I had an injection of lanreotide (which lowers your TSH levels) just a week and a bit before the surgery, there's also the possibility that the drug is still in my system and is now lowering them too much.

So the long and short of it is: more blood tests, wait and see!

Sad News about Tanya Angus, Acromegaly Sufferer

I've been out of the world for a little while thanks to my surgery, so I was saddened to find out only today that Tanya Angus, an acromegaly sufferer, passed away on the 14th January. She was aged just 34, and died from heart failure and transient ischaemic attack (a "mini-stroke").

Tanya Angus had one of the most severe cases of acromegaly (a.k.a. gigantism) ever seen; it was not until her pituitary adenoma (tumour) grew to the size of a grapefruit that she was finally diagnosed. By this time, the tumour wrapped around her pituitary gland proved extremely resistant to surgical and radiotherapy treatment. Her condition caused her to grow from 5'8" at the age of 21 to 7ft tall by the time of her death, and to go from 130 to 400lbs. Just last August it seemed that injections to inhibit her growth hormone production had been successful, but by October sadly her levels of growth hormone were rising once again.

She was a well-known figure in the acromegaly community for her efforts to raise awareness of the condition, and to encourage education about and early detection of gigantism among the medical profession. Anyone reading her website, or the comments sections of the various news websites which reported her death, can't fail to notice how many of her fellow acromegaly sufferers viewed her as an inspiration.

Back Home

I moved back to my house on Sunday! I'd been staying with my parents after being discharged from hospital post-surgery, because I was basically super pathetic and really needed someone to be around all the time at first. Now I'm able to make myself a cup of tea and some lunch, and walk a reasonable distance, I judged myself able to head home. One of my housemates works from home and is therefore in most of the time, so there'll still usually be someone around to keep an eye on me, which is nice (for me; she may have her own views on the matter...)

Moving back was quite a busy day - my parents live over an hour's drive away and I had to pack everything up ready to head home. I'm definitely not allowed to do any heavy lifting, so the actual fetch-and-carry part of the process had to be left to other people, chiefly my mum and dad (sorry!). We got back, I had a little rest and unpacked my clothes (some of the other stuff is still in bags - I'm progressing, just slowly), and then walked to a nearby pub for a drink. My walking is quite entertaining - I can walk for half an hour or so at a time quite happily now, but what happens is that I start off at something approaching a normal pace and then get slower and slower over time, like a clockwork girl who's losing power. Consequently half an hour's worth of walking does not cover what I would normally consider to be half an hour's worth of ground.

So I'm doing pretty good really - made it into town and back yesterday, although I had to stop for a lengthy coffee break once I got there, and when I got home I curled up in my room and just read for a couple of hours, I definitely felt tired.

I've only had one appointment through from the hospital so far, so I suspect I'm going to have to chase the rest up, joy of joys! I was told I would see the ENT surgeon at four weeks after the surgery (for another camera-up-nose session, alas), have blood tests done at six weeks, see the pituitary clinic at eight weeks, have an MRI at eight weeks and then see the neurosurgeon a couple of weeks after that. So my schedule will shortly be full of treats!

Back on the ward

Once I woke up after my endoscopic transsphenoidal pituitary adenoma resection surgery (that's what they called it on the forms!) I had half an hour or so in the post-surgical recovery area to rehydrate and have regular neurological checks. I had these throughout my time in hospital, with decreasing regularity. They ask you where you are, what year it is etc (it usually takes me until at least February to readjust to a new year so I had to concentrate for that one), then there are physical tests; squeezing hands, pulling and pushing with your hands and feet etc. to check that nothing weird's going on in your head.

The last time I had pituitary surgery, I was pretty perky afterwards, probably because I had a whole bunch of morphine when I woke up. This time however, my head barely hurt when I woke up, so no morphine, so I was rather more subdued... Which I think everyone else was probably thankful for. I was taken onto the ward and my parents arrived not long after. A nurse brought me a yoghurt to eat and then a tuna sandwich - I only managed about a quarter of it, but it was really nice to have some food, and when the tea trolley came around I was practically in heaven.

At first I had to have observations taken every half an hour for the first six hours, then once an hour for six hours, then every two hours, and so on. Observations involved measuring blood pressure, blood oxygen levels, heart rate, breathing rate, pupil response to having bright light shone in them (usual response: argh, get that light out of my face), and the aforementioned neurological tests.

I was really not in much pain at all, I had some paracetemol and that was all I needed with regards to painkillers - I was up and walking to the loo within two hours of waking up, so I did pretty well I think. They start you on hydrocortisone, a steroid medication, immediately after surgery (via IV drip initially) because there's always a risk that your body will stop producing steroid hormone after the operation, which may be temporary or permanent.

The most exciting thing to happen was a ninja nosebleed, which suddenly appeared from out of the blue. A nurse ran up to the neurosurgical theatres to grab a selection of bandages wrapped up in bandages, to tie around my face like an attractive surgical moustache and catch any unexpected oozing.