The (Im)Patient Patient

I've always had a problem with the phrase "caught like a rat in a trap". I feel it could be improved upon. Rats are smart. Rats, once caught, sometimes make it out of traps.

But they never make it out of cats.

I currently feel much like a rat in a cat. It has now been six weeks since I had an injection of lanreotide. They only last for a month. During that month I did feel much better. At one point I ran upstairs and my heartrate barely increased, even though I hadn't taken my medication that day. For me, that is a medial coup indeed.

Alas, those halcyon days are gone. I'm back to taking two or three propranolol tablets a day to keep my heartrate as normal as possible. My moments of hypoglycaemia (brought on by the lanreotide injections) have been replaced by finding the six flights of stairs to my desk much more challenging in the morning.*

As you can imagine, I am chafing under this new and irritating regime, rendered all the more irritating by the fact that if my stupid former GP's surgery didn't have such nonsensical rules then I would have had my second injection by now and all would be hunky dory. Consequently, I'm calling the hospital every week to find out what's going on. I contact one of the nurses in the endocrine department, who is lovely, and then we have a mutual guilt festival, whereby she feels guilty for not being able to give me good news and I feel guilty for making her feel guilty considering that it's not her fault in the slightest.

I called last Wednesday, at the five-weeks-since-last-injection mark, and the nurse said that she could confirm all the paperwork had finally been submitted, and she seemed optimistic that it would get approved quickly and I'd get the injection soon. I called again today but the atmosphere of optimism had sadly been replaced with uncertainty over exactly how long this would take. Apparently, if your life is not immediately threatened by the lack of medication, then it doesn’t matter that you're symptomatic and the tumour in your head could well be growing happily like an evil, greedy mushroom.** You just have to be patient.

If ever I had wondered how the word "patient" had come to have two such different meanings - meaning in the first instance, a calm endurance of difficulty, and in the second, a person receiving medical treatment - I stopped wondering some time ago, because it seems that extreme feats of patience are required pretty much as soon as you become a patient.


_________________________________________________
*I should point out that my desk is in an office which is accessed by climbing six flights of stairs and then walking along a corridor. I don't just have a desk sitting atop a massive staircase, although that would be quite awesome.
** I don't like mushrooms.

Human Guinea Pig: Part 3 - Actiheart Monitor & Step Test

This is the third part of the story about my overnight stay in the hospital's research department, having lots of tests to look at the effect my pituitary tumour is having on my body and metabolism. You can read the first part here, and the second part here.

Actiheart Monitor & Step Test

Once my body composition scan was finished, there was a certain amount of fretting that I would be late for my MRI scan appointment, so I was immediately whisked off to have my step test and Actiheart monitor fitted. This meant I was still wearing giant scrubs and no bra when I was supposed to be doing mildly athletic deeds, which proved somewhat inconvenient.

The Actiheart monitor is a teeeny tiny heart monitor which attaches to your chest by means of two sticky pads coated in glue so vicious it's almost impossible to wash off without taking the top layer of skin off too. I was informed I would be wearing it until midday Friday (I had not had any kind of advanced warning about that!) and that they wanted to carry out a step test to calibrate it. Essentially, while standing in a room full of cycling machines and a giant treadmill, you have to spend eight minutes stepping alternately onto and off of a purple plastic step, in time with a computerised voice which says "Up. Up. Down. Down." and gradually gets faster. The Actiheart records your heartrate as you do so, and then this is compared to the recording of your heart over the next few days, and used to gauge your activity level against your heartrate.

It's so tiny!

This explanation seemed pretty bizarre to me, because they were recording my exercising heartrate while I was off medication and therefore had an unusually fast heartrate, and then using this to calibrate the results of the heart monitor recording my heartrate when I was back on the medication. I have not yet had a satisfactory explanation of why this isn't stupid, but I live in hope.

Anyway. The computerised voice started up, and after only a minute or so began to take on a strangely hypnotic quality as I stepped endlessly up and down. By 5 minutes 30 seconds, the voice saying "Up. Up." started to sound more like an evil "Ha. Ha." and I became convinced the computer was laughing at me. The whole time, I had to hold up the trouser legs of my giant scrubs because they were too long as well as too wide, and I was concerned I would trip and fall on my (apparently worryingly fat) arse. Pro tip for the creators of Actiheart: I have to say that the whole experience would be vastly improved if you set the "Up. Up. Down. Down." man's voice to trance music.

Having just been told that I was 36% lard, I became quite concerned that I must be hideously unfit and would utterly disgrace myself by being unable to complete the step test, but in fact it was totally fine and even when he got quite fast at the end I was still happilly stepping away.

There was no printout of results to take away with me; I have to wait until the five-day recording has been analysed and then I should get some feedback through the post. I can't believe quite how small and awesome it is, compared to the 24-hour heart monitors which I've had to wear previously, which have invariably been vast, bulky and inconvenient.

My experience of the Actiheart Monitor and Step Test:

Hassle: 5/5
Fun: 3/5
Weirdness: 4/5
Results: 2/5
Total score: 14/20

Further Phonecall Funtimes With The Hospital

Another hilarious hospital moment: so on Friday I was heading to London for a friend's wedding (congratulations Mrs X!). The wedding wasn't until four, but I was doing the bride's hair and makeup and consequently heading down there nice and early. I felt almost certain that the hospital would attempt to phone me during the ceremony, because their phone call timing is always so hilariously dire. I am happy to report that they did not! Hurrah! Instead they called me just as I was trying to get onto a train, juggling three bags, one of which had to be kept upright at all times, and a cup of hot coffee.

Anyway, I made it to a seat without dropping the phone or spilling hot coffee all over my dress, and very proud I was too. The best part of the phone call was the beginning, which went like this:

ME: Hello?
ENDOCRINOLOGIST: Hiya, is this an OK time to talk?
ME: Yes, now is fine! (I am quite the liar)
ENDOCRINOLOGIST: SO I was just calling to let you know that I've confirmed the date for you to come in for your overnight testing on the 3rd to the 4th July-
ME: I'm sorry, did you say the 3rd to the 4th?
ENDOCRINOLOGIST: Yes, the 3rd to the 4th July, as we agreed on Monday?
ME: On Monday you told me it would be the 2nd to the 3rd...
ENDOCRINOLOGIST: Oh, did I? Sorry, it's actually the 3rd to the 4th. I'm always doing things like that, haha!

FACEPALM

Fortunately I could do the 3rd-4th as well, although I had to cancel plans to have dinner with a couple of my friends on the evening of the 3rd (sorry guys!). But I have to admit I was slightly taken aback at the fact that the endocrinologist didn't even inquire whether the new date suited me, despite the fact I would obviously have to re-clear it with work etc. She just assumed there would be no problems.

Perhaps at this point I should reiterate the fact that the hospital I'm treated at is in the main very good, with regards to treatment, explaining things, liaising across different departments, making sure I'm seen by multiple members of the endocrinology team etc. The nurses there are absolutely lovely, and when I had my surgery they really did look after me well. It's only in the administrative context that they fall down so abysmally, and I guess if it's a choice between a hospital providing very good treatment but being rubbish at arranging appointments, or vice versa, we all know which we'd prefer.

But anyway. The long and the short of it is that I will be going into hospital next Tuesday afternoon and staying in til around four o'clock on Wednesday. They've managed to arrange it so I will have my first PET scan on Wednesday so I won't have to come in again on a different day, which is good news. As for precisely what tests they are going to do, they've been kind of vague on the details but have said they'll send me leaflets on them; it's going to include a further pituitary MRI, some kind of body composition scan (I am now slightly afraid they'll tell me I'm composed of 90% fat), along with another bone density scan I think, and what I believe is technically referred to as a "shitload" of bloodtests.

I'm supposed to come off the beta blockers from the 31st and not take them at all until after my last set of blood tests on the 4th, which is going to SUCK. I have to travel through London on the 31st and I am really not looking forward to it now. I'm frequently finding I have a resting heartrate of about 120bpm at the moment and I've had to double my daily dose of beta blockers compared to what I was taking when I was on the lanreotide. Erk. I have expressed my annoyance on here previously at the fact that doctors really don't understand how rubbish tachycardia can make you feel; it just makes absolutely everything feel like really hard work. I'm also slightly suspicious that when I get there they might try and make me run on a treadmill or something (someone I work with had metabolic testing at the same hospital in the same facility and that's what they made her do) which without beta blockers would beeven less fun than usual!

So I'm going to try to remember to take my camera along with me to the hospital and take some pictures while I'm there, if they'll let me! Other people with medical type blogs always post pictures of their scans or having tests done or whatever and I never do, so I am determined to have a bash at it. If worst comes to worst I shall at least endeavour to get some exciting shots of my hospital bed...

Hyperthyroid Patients, Unite!

Subtitle: You have nothing to lose but your goitres!

So here's the strange thing: I have a TSHoma - a pituitary tumour which secretes TSH (thyroid stimulating hormone). It's super rare. According to my endocrinologist there are maybe thirteen or so other people in the UK with this condition which, in a population of 63 million, is Not Very Many, although it probably does go largely underdiagnosed; I had my first symptoms when I was around 16 or 17 and didn't get a diagnosis until I was 22.

But anyway, the point is that it can sometimes almost feel like two separate conditions; I have the pituitary adenoma, and the hyperthyroidism it causes. My symptoms, apart from the odd nasty headache, are pretty much exclusively those of hyperthyroidism; my treatment is for the adenoma. Consequently, although I am in all seriousness a paid-up member of the Pituitary Foundation and can chat about transsphenoidal surgery and lanreotide injections with the best of them, I'm missing out on the chance to bitch and moan about sinus tachycardia and getting the shakes with other people whose blood has turned to delicious thyroid hormone stew. More fool me!

People with excess thyroid hormone usually get that way from either a) taking too high a dose of thyroxine medication (exogenous thyrotoxicosis), or b) something else. The former can be dealt with simply by reducing the dose. The latter is more complicated. Possible causes include:

Graves Disease - the most common cause of hyperthyroidism, Graves is an autoimmune disease which can be treated with anithyroid drugs, surgery to remove part or all of the thyroid, or a dose of radiactive iodine. After such treatment there's a substantial and ironic risk of hypothyroidism - i.e. not having enough thyroid hormone.

Tumours of the thyroid gland - thyroid adenoma is a benign tumour of the thyroid gland which may secrete large amounts of thyroid hormone, while thyroid nodules may be benign or malignant and again may or may not release thyroid hormone - in some cases they may actually inhibit its production, causing hypothyroidism.

Thyroiditis - inflammation of the thyroid gland. Although this often initially leads to high levels of thyroid hormone being released, it usually progresses to thyroid disfunction with the gland unable to produce sufficient hormones, and ultimately causes hypothyroidism. Around 7% of women experience temporary thyroiditis after giving birth (postpartum thyroiditis) which may lead to hyper- or hypothyroidism, or both; this usually resolves itself.

TSH hypersecretion - super rare, but usually caused by a pituitary adenoma (hurrah!). However, I believe there is also the possibility of a tumour in the hypothalamus causing excess Thyrotropin Releasing Hormone and hyperstimulating the pituitary gland to overproduce TSH, which in turn would hyperstimulate the thyroid gland to overproduce thyroid hormone. Again, it's very rare.

I guess really I should be grateful for this, as effectively I have two health conditions for the price of one. This blog is usually focussed mainly around the dramatic "there's a tumour in my head!" aspects of my pituitary adenoma, and poor little hyperthyroidism barely gets a look in, except for when I complain about my tachycardia/hair falling out/absurd appetite issues. But no longer! From now on I vow to go on about hyperthyroidism more. So you guys will get two lots of whingeing for the price of one!

My Heart Goes Sha La-La La-La

My rate of posting has dropped slightly recently, down from those heady days in November when I was continually finding out new facts about Russell Watson, and stalking unwitting commentators on the Guardian's website. This is not because I have lost interest in such matters - far from it - but because I'm taking exams at the moment and consequently dedicating my energy to revision and work, rather than obsessive tumourhead fact collection.

Incidentally, the most popular search term for my blog is currently "peoples big noses". Say what?

In any case, as well as spending my days drawing extensive mind maps, and making full use of my considerable collection of coloured pens,* I have discovered a new and interesting fact about my post surgery self; namely that my traditional mild pre-exam nerves (which previously I rather cherished for their ability to get me writing quickly) now serve to completely undermine my body's new-found ability to regulate its own heartbeat.  So, with a speedy speedy heart, the exam was a slightly more stressful experience than I had expected, and I will definitely be carrying beta blockers with me next time.

Ah, tachycardia.

________________________________________________________
*Because that's what revision is about.