So I made it to the hospital on Thursday for my appointment, and it went about as well as I could have hoped for. First stop: getting weighed (58.4kg). Second stop: blood pressure, resting and standing (both totally normal - a good sign as when I'm taking propranolol it's often very slightly low). Third stop: a comfortable chair in the waiting room for an hour.
Just as I was starting to think that I might actually have been forgotten, my endocrinologist swooped in. It was a pretty quick appointment really. My blood tests look good. I had a good response to the synacthen test and can stop taking hydrodortisone (if you don't understand all this medical terminology, in short: that is good!). All my thyroid hormones are solidly in the normal range - including the alpha subunit. The alpha subunit (a.k.a. chorionic gonadotropin alpha) is a protein. People who have TSHomas/thyrotropinomas often have an unusually high level of it in their blood. The normal range of the subunit in blood tests is below 1. When my blood was first tested for the alpha subunit, I think my level was about 13. My most recent test showed it at 0.95 - not only normal, by far the lowest it's ever been for me. Even after my first surgery it was around 5 or so.
So thus far, everything looks good and they don't want to refer me for radiotherapy. I don't particularly want to have radiotherapy, so that is excellent news. My MRI shows scar tissue, but nothing that looks like residual tumour, and my pituitary gland appears to be functioning normally despite two surgeries. Of course, if a few cells or a teeny tiny bit of tumour has been left behind, there's basically no way to tell unless it grows back, so the policy is just to watch and wait.
Next appointment is in six months. I had another round of blood tests and they kept some of my blood on ice for the various studies they do on TSH-secreting pituitary adenomas. I'll have another set of blood tests before the next appointment and see how they change. In the meantime, basically I just keep on keeping on!
Showing posts with label blood tests. Show all posts
Showing posts with label blood tests. Show all posts
Sunday, 28 July 2013
Monday, 1 July 2013
A Day in the Life of an Irregular Blogger
Aloha! It's been another age since I've written in here! My apologies. I thought I'd pop by to give you a quick update.
Way back on the 15th April I had an MRI scan at the hospital (so long ago that I had to look up the dates in my diary at work...). I didn't get the results until the 20th May, when I had an appointment with a very nice nurse in Neurosurgery. My lovely boyfriend came with me to the hospital and saw the scan images, so I guess now he is in the enviable position of having seen exactly what's going on inside his girlfriend's head!
The scans look pretty good - it's always hard to tell just from an MRI, but the surgeons were optimistic that they managed to remove the whole tumour, and there's nothing obviously wrong in the images. The trouble is that the pituitary gland is so tiny - about the size of your little fingernail - so even with the contrast injections, at best an MRI is only an indication of what's going on in there - blood tests are very important as well. But the surgeons are very happy with me, and as far as they're concerned, I don't have to have another MRI for a year. Hurrah!
On the 27th June I went to see the endocrine nurses for a synacthen test. This test evaluates how well the pituitary is producing adrenocorticotropic hormone (ACTH). This hormone is really crucial for your body, and because there's always a risk that surgery can damage the pituitary gland, patients who have transsphenoidal surgery are put on replacement steroid medication as a matter of course. The doctors will only let you come off the medication if a synacthen test shows your pituitary gland is now able to produce ACTH on demand.
I already had one of these tests back in March and my pituitary had a fairly good response, but not quite good enough to come off the medication totally. The endocrinologists halved my dose of hydrocortisone, but I'm still taking 5mg in the morning and 5mg at midday. I'm hoping that the results of my test last week will be good enough for me to come off the steroids totally. It would be in line with what happened after my last operation, when it took about six months before I was able to come off medication. Certainly immediately after the operation I was in need of the steroids - about a month after surgery, I forgot my 4 o'clock 5mg dose, and was a complete emotional wreck all evening until I remembered I hadn't taken it at about 7pm. I took it - and half an hour later I was already feeling immensely better. More recently I have forgotten to take my hydrocortisone on time once or twice and not had any ill effects at all, which hopefully is a good sign.
I don't know yet what date I'm due back at the hospital for my next proper follow-up with endocrinology. I had thought it would be the end of June, but apparently it's actually going to be the end of July, four months after my last clinic appointment. Then I should get the results of the synacthen test, and the other blood tests they did at the same time to check my thyroid levels.
Way back on the 15th April I had an MRI scan at the hospital (so long ago that I had to look up the dates in my diary at work...). I didn't get the results until the 20th May, when I had an appointment with a very nice nurse in Neurosurgery. My lovely boyfriend came with me to the hospital and saw the scan images, so I guess now he is in the enviable position of having seen exactly what's going on inside his girlfriend's head!
The scans look pretty good - it's always hard to tell just from an MRI, but the surgeons were optimistic that they managed to remove the whole tumour, and there's nothing obviously wrong in the images. The trouble is that the pituitary gland is so tiny - about the size of your little fingernail - so even with the contrast injections, at best an MRI is only an indication of what's going on in there - blood tests are very important as well. But the surgeons are very happy with me, and as far as they're concerned, I don't have to have another MRI for a year. Hurrah!
On the 27th June I went to see the endocrine nurses for a synacthen test. This test evaluates how well the pituitary is producing adrenocorticotropic hormone (ACTH). This hormone is really crucial for your body, and because there's always a risk that surgery can damage the pituitary gland, patients who have transsphenoidal surgery are put on replacement steroid medication as a matter of course. The doctors will only let you come off the medication if a synacthen test shows your pituitary gland is now able to produce ACTH on demand.
I already had one of these tests back in March and my pituitary had a fairly good response, but not quite good enough to come off the medication totally. The endocrinologists halved my dose of hydrocortisone, but I'm still taking 5mg in the morning and 5mg at midday. I'm hoping that the results of my test last week will be good enough for me to come off the steroids totally. It would be in line with what happened after my last operation, when it took about six months before I was able to come off medication. Certainly immediately after the operation I was in need of the steroids - about a month after surgery, I forgot my 4 o'clock 5mg dose, and was a complete emotional wreck all evening until I remembered I hadn't taken it at about 7pm. I took it - and half an hour later I was already feeling immensely better. More recently I have forgotten to take my hydrocortisone on time once or twice and not had any ill effects at all, which hopefully is a good sign.
I don't know yet what date I'm due back at the hospital for my next proper follow-up with endocrinology. I had thought it would be the end of June, but apparently it's actually going to be the end of July, four months after my last clinic appointment. Then I should get the results of the synacthen test, and the other blood tests they did at the same time to check my thyroid levels.
Monday, 6 May 2013
I'm Still Here!
Aloha! Long time no blog I know, profuse apologies all round. Partially I have been lazy, partially I have been working on other projects and partially I have been enjoying my recovery!
I went back to work around the beginning of March. I did a phased return, which I really recommend - the first couple of days back I felt pretty much exhausted by lunchtime, but by the end of my first week I was almost back to normal. So I've been back for two months now (how time flies!) and doing good.
I had a series of blood tests done in March by my endocrinologists and they came back looking good. My ACTH response wasn't quite back to normal, so I'm still taking hydrocortisone (albeit at a low dose), but my endocrinologists were optimistic that hopefully I'll be able to come off it in a few months. The same thing happened after my first surgery, so fingers crossed! The rest of my pituitary hormones are all fine - my TSH and free T3 and T4 came back the lowest they have ever been.
I'm back up to my pre-surgery level of fitness now too, and hopefully going to surpass it! I dance for 3 hours a week, swim for an hour, do lots of walking, the odd run, and yesterday I bought a bicycle so now I'll start doing some cycling too. I'm only taking propranolol very occassionally - I still get the odd bout of a fast resting heartrate, particularly after eating, but it's not often. I'm off to the doctors for an ECG to check that out tomorrow, although chances are it won't show anything and they'll need to do a 24-hour heart tape.
So all in all things are looking good so far. I've had an MRI scan now but I don't get the results til the 20th May when I go to meet with the neurosurgeon. Fingers crossed!
I went back to work around the beginning of March. I did a phased return, which I really recommend - the first couple of days back I felt pretty much exhausted by lunchtime, but by the end of my first week I was almost back to normal. So I've been back for two months now (how time flies!) and doing good.
I had a series of blood tests done in March by my endocrinologists and they came back looking good. My ACTH response wasn't quite back to normal, so I'm still taking hydrocortisone (albeit at a low dose), but my endocrinologists were optimistic that hopefully I'll be able to come off it in a few months. The same thing happened after my first surgery, so fingers crossed! The rest of my pituitary hormones are all fine - my TSH and free T3 and T4 came back the lowest they have ever been.
I'm back up to my pre-surgery level of fitness now too, and hopefully going to surpass it! I dance for 3 hours a week, swim for an hour, do lots of walking, the odd run, and yesterday I bought a bicycle so now I'll start doing some cycling too. I'm only taking propranolol very occassionally - I still get the odd bout of a fast resting heartrate, particularly after eating, but it's not often. I'm off to the doctors for an ECG to check that out tomorrow, although chances are it won't show anything and they'll need to do a 24-hour heart tape.
So all in all things are looking good so far. I've had an MRI scan now but I don't get the results til the 20th May when I go to meet with the neurosurgeon. Fingers crossed!
Wednesday, 13 February 2013
'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!
Sunday, 10 February 2013
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
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
Thursday, 7 February 2013
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!
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!
Monday, 24 December 2012
How Not To Get A Date
So there's quite a lot of catching-up to do, given that I have been a bad pituitary blogger for the past month and a half and yet quite a few highly relevant things have happened, including meeting with the neurosurgeon and Ear Nose and Throat people (who are apparently more properly called Otolaryngologists - who knew?) and finally getting a date for surgery. I shall start at the very beginning...
At the beginning of November, my next injection was due. You probably know by now that I need monthly injections of lanreotide, a somatostatin analogue, to suppress the overproduction of thyroid stimulating hormone by my pituitary tumour. These injections are delivered into my hip via the medium of a really big needle. It's so big I'm pretty sure a camel actually could pass through it.*
One of the nurses greeted me when I arrived, took my bloods and then went to get the injection. Then something happened which had never happened before.
"Would you like any freezing spray?" she asked me.
I was nonplussed. Previously, I had always associated freezing spray with childhood trips to the Irish seaside, not hospitals. I had to ask what it was.
"Oh, it's just a spray which freezes the skin before an injection," the nurse explained.
Those who know me well will know that one of the few things I like less than injections is being cold. "Sounds unpleasant," I said.
"Yes, it's quite painful," the nurse said breezily. "But some patients still prefer it."
Now at this point, I admit perhaps I should have smelled a rat. No other nurse had ever offered me freezing spray prior to one of these injections. But I wasn't worried.
Like a fool.
Most nurses, when they do this injection, hold the needle (did I mention it's massive?) against your skin and then gently press it in. Not this nurse. Instead, she opted to hold the needle some distance away from the injection site, then take a great swing and stab me with it. It was considerably more painful than usual, and I bled a lot more than normal as well.
I can see why her patients usually ask for freeze spray.
So, I promptly became the proud owner of an excitingly multi-coloured hip bruise, which lasted for three weeks before finally fading just before I was due the next injection. I actually did try to take a photo to show you all but it just came out as a blurry smoosh. For a couple of days I couldn't even lie in bed on that side without wincing.
Anyway, that anecdote was by way of being an aperitif to the main cock-up that I encountered on that trip to the hospital. While my hip was bleeding gently, one of the endocrine nurses asked if I'd heard
anything from the Neurosurgery or Ear Nose & Throat departments, who were supposed to be getting in touch with me about my impending surgery. I explained that I'd still heard nothing and that despite my attempts to call them I'd never got through to speak to an actual human being, and they'd never returned any of my messages. The nurse went off, had a look at her computer, and returned to tell me that I'd had an appointment with ENT. On the 26th October. Which was four days previously.
I also had an appointment booked in on the 5th November with Neurosurgery which I knew nothing about, and ENT had written to me to rearrange my missed appointment for the 6th November.
They'd been writing to my old address.
I still don't have the faintest idea how it happened. As soon as I moved house, I duly phoned the hospital and updated them with my new address. Not long afterwards, I received an appointment from the MRI Department at my new house. I sighed a deep sigh of relief in the happy knowledge
that my details had been successfully updated... and it never occurred to me that they might be sending appointments to my old address.
Obviously I am also slightly put out at my former housemates, who knew I was going to have surgery and who I'd asked to forward on any hospital-looking letters, or even just let me know if they arrived so that I could drop by to pick them up. But how the hospital could get it right... and then revert to getting it wrong, I have no idea. It's not the first time it's happened, either - avid readers will recall that information about a ream of tests I had to have in July was sent to my old address despite the fact that I'd not lived there in four months and all my other letters had gone through correctly.
So obviously, I was very upset about this. I had been doing everything I could to find out
about my appointments, and no-one ever got back to me. You have to wonder how many appointments I would have had to miss before anyone bothered to do so.
__________________________________
* Hell yeah, I'm cultured.
At the beginning of November, my next injection was due. You probably know by now that I need monthly injections of lanreotide, a somatostatin analogue, to suppress the overproduction of thyroid stimulating hormone by my pituitary tumour. These injections are delivered into my hip via the medium of a really big needle. It's so big I'm pretty sure a camel actually could pass through it.*
One of the nurses greeted me when I arrived, took my bloods and then went to get the injection. Then something happened which had never happened before.
"Would you like any freezing spray?" she asked me.
I was nonplussed. Previously, I had always associated freezing spray with childhood trips to the Irish seaside, not hospitals. I had to ask what it was.
"Oh, it's just a spray which freezes the skin before an injection," the nurse explained.
Those who know me well will know that one of the few things I like less than injections is being cold. "Sounds unpleasant," I said.
"Yes, it's quite painful," the nurse said breezily. "But some patients still prefer it."
Now at this point, I admit perhaps I should have smelled a rat. No other nurse had ever offered me freezing spray prior to one of these injections. But I wasn't worried.
Like a fool.
Most nurses, when they do this injection, hold the needle (did I mention it's massive?) against your skin and then gently press it in. Not this nurse. Instead, she opted to hold the needle some distance away from the injection site, then take a great swing and stab me with it. It was considerably more painful than usual, and I bled a lot more than normal as well.
I can see why her patients usually ask for freeze spray.
So, I promptly became the proud owner of an excitingly multi-coloured hip bruise, which lasted for three weeks before finally fading just before I was due the next injection. I actually did try to take a photo to show you all but it just came out as a blurry smoosh. For a couple of days I couldn't even lie in bed on that side without wincing.
Anyway, that anecdote was by way of being an aperitif to the main cock-up that I encountered on that trip to the hospital. While my hip was bleeding gently, one of the endocrine nurses asked if I'd heard
anything from the Neurosurgery or Ear Nose & Throat departments, who were supposed to be getting in touch with me about my impending surgery. I explained that I'd still heard nothing and that despite my attempts to call them I'd never got through to speak to an actual human being, and they'd never returned any of my messages. The nurse went off, had a look at her computer, and returned to tell me that I'd had an appointment with ENT. On the 26th October. Which was four days previously.
I also had an appointment booked in on the 5th November with Neurosurgery which I knew nothing about, and ENT had written to me to rearrange my missed appointment for the 6th November.
They'd been writing to my old address.
I still don't have the faintest idea how it happened. As soon as I moved house, I duly phoned the hospital and updated them with my new address. Not long afterwards, I received an appointment from the MRI Department at my new house. I sighed a deep sigh of relief in the happy knowledge
that my details had been successfully updated... and it never occurred to me that they might be sending appointments to my old address.
Obviously I am also slightly put out at my former housemates, who knew I was going to have surgery and who I'd asked to forward on any hospital-looking letters, or even just let me know if they arrived so that I could drop by to pick them up. But how the hospital could get it right... and then revert to getting it wrong, I have no idea. It's not the first time it's happened, either - avid readers will recall that information about a ream of tests I had to have in July was sent to my old address despite the fact that I'd not lived there in four months and all my other letters had gone through correctly.
So obviously, I was very upset about this. I had been doing everything I could to find out
about my appointments, and no-one ever got back to me. You have to wonder how many appointments I would have had to miss before anyone bothered to do so.
__________________________________
* Hell yeah, I'm cultured.
Friday, 20 July 2012
Human Guinea Pig: Part 7 - How To Get Over Your Fear Of Needles
Holy lord! Who would have thought, when I agreed to go into hospital for all this testing, that the experience would prove to be such a rich vein of blog posts?
Anyway! This is the sixth 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. Here are links to: part one, part two, part three, parts four, five and six!
After my GEM ventilated hood calorimetry test was over, and the strange astronaut hood was removed from my person, you might be imagining they'd let me have breakfast. If so, you are imagining wrong. Please stop.
No, it was time for my blood glucose testing! And so I was presented with this:
No, it's not a refreshing beer: it's a pint of Lucozade. At nine in the morning. And I had to drink it all within five minutes.
Basically the idea is that, having eaten/drunk nothing but air for twelve hours, they present you with a massive sugary drink and then do a bunch of blood tests over the next two hours to see how well your body deals with it. I'll be interested to find out the results of this, as I'm pretty sure my body isn't great at coping with sugar; sometimes eating sugary things really noticeably raises my heartrate - and especially when I'm on my lanreotide injections, I have to try to be really careful about eating regularly, and carry around a packet of Starburst (or similar sugary hit) because occassionally I go hypoglycaemic at unexpected moments. Lanreotide messes around with your insulin and glucagon levels, meaning that it can confusingly cause both high and low blood sugar, and it sure is annoying.
I looked it up, and it turns out Lucozade was originally conceived as an Irish health drink and called Glucozade! Who knew! Between that and Guinness, it seems my ancestors had some peculiar ideas about what was "healthy". It also turns out that Lucozade contains 85g of sugar per 500ml, which is almost all of a woman's daily allowance. Holy crap! You can see why they chose it for my morning tipple.
While I was distracted trying to gulp down the hideous stuff, the sneaky nurses set up the trolley ready for my blood tests. Having finally finished all my Lucozade, I turned around to see this:
Yep. All those tubes were for me. I got to have twenty-three bloods taken in total - lucky me!
First they put an IV cannula into my arm - basically it's a giant needle that stays in your vein and they can attach tubes and things to so that they don't have to re-stab your arm every time they take another blood. They took about 16 of the bloods immediately, and then I had the rest over the next two hours. I still can't really bring myself to look at cannulas in my arm due to being a wuss, so one of the nurses very kindly bandaged it up for me.
The nurses and my endocrinologist formed a sort of production line around my arm for the first sixteen, with one nurse preparing the tubes, Dr Olive taking the blood, and the other nurse stacking them up (some had to go straight into a bucket of ice; some had to be left to clot).
Once they've finished taking one lot of bloods via a cannula, the tube is flushed out with saline solution (i.e. they effectively inject saline into the tube). This clears the blood out of the tube, preventing it from clotting and blocking the tube in-between blood tests. Of course, then the next time they come to take blood, this means that they get half a tube of saline back before the blood starts coming through properly, which is of no use to anybody. Because of this, before taking further bloods, they take an extra tube which comes out as a mix of the saline & blood, then continue with the tests - and then sometimes (if you're having a lot of bloods taken, like me) they'll re-inject the blood and saline, to minimise blood loss.
I've never written the word "blood" so much in my life as I just did in that last paragraph, but I promise I'm not just trying to gross you out; there's an interesting fact coming up. Before re-injecting the blood & saline, I was asked if I was ok with it. I was very much ok with it, because sometimes having lots of blood taken gives me a Funny Turn (in this case I was fine, probably thanks to the pint of Lucozade) and thus I like to hang on to the stuff. Turns out they always have to ask before re-injecting the blood, in case you're a Jehovah's Witness.
I have long been aware that Jehovah's Witnesses are against blood transfusions, but I'd always assumed that this was due to believing that it was wrong to have someone else's blood put into your body; I hadn't appreciated that in fact the problem is with any blood that has left the body at all, even your own. According to Wikipedia, for Jehovah's Witnesses "Blood represents life and is sacred to God. It is reserved for only one special use, the atonement for sins. When a Christian abstains from blood, they are in effect expressing faith that only the shed blood of Jesus Christ can truly redeem them and save their life".
Hassle: 4/5
Fun: 1/5 (It would have been a zero, but I learned an interesting fact!)
Weirdness: 2/5
Results: 2/5
Total Score: 9/20
Anyway! This is the sixth 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. Here are links to: part one, part two, part three, parts four, five and six!
A Whole Lot of Blood Tests
After my GEM ventilated hood calorimetry test was over, and the strange astronaut hood was removed from my person, you might be imagining they'd let me have breakfast. If so, you are imagining wrong. Please stop.
No, it was time for my blood glucose testing! And so I was presented with this:
 |
| Yay, breakfast |
Basically the idea is that, having eaten/drunk nothing but air for twelve hours, they present you with a massive sugary drink and then do a bunch of blood tests over the next two hours to see how well your body deals with it. I'll be interested to find out the results of this, as I'm pretty sure my body isn't great at coping with sugar; sometimes eating sugary things really noticeably raises my heartrate - and especially when I'm on my lanreotide injections, I have to try to be really careful about eating regularly, and carry around a packet of Starburst (or similar sugary hit) because occassionally I go hypoglycaemic at unexpected moments. Lanreotide messes around with your insulin and glucagon levels, meaning that it can confusingly cause both high and low blood sugar, and it sure is annoying.
I looked it up, and it turns out Lucozade was originally conceived as an Irish health drink and called Glucozade! Who knew! Between that and Guinness, it seems my ancestors had some peculiar ideas about what was "healthy". It also turns out that Lucozade contains 85g of sugar per 500ml, which is almost all of a woman's daily allowance. Holy crap! You can see why they chose it for my morning tipple.
While I was distracted trying to gulp down the hideous stuff, the sneaky nurses set up the trolley ready for my blood tests. Having finally finished all my Lucozade, I turned around to see this:
 |
| Oh, dear lord. |
Yep. All those tubes were for me. I got to have twenty-three bloods taken in total - lucky me!
First they put an IV cannula into my arm - basically it's a giant needle that stays in your vein and they can attach tubes and things to so that they don't have to re-stab your arm every time they take another blood. They took about 16 of the bloods immediately, and then I had the rest over the next two hours. I still can't really bring myself to look at cannulas in my arm due to being a wuss, so one of the nurses very kindly bandaged it up for me.
 |
| Safely hidden away! |
The nurses and my endocrinologist formed a sort of production line around my arm for the first sixteen, with one nurse preparing the tubes, Dr Olive taking the blood, and the other nurse stacking them up (some had to go straight into a bucket of ice; some had to be left to clot).
Once they've finished taking one lot of bloods via a cannula, the tube is flushed out with saline solution (i.e. they effectively inject saline into the tube). This clears the blood out of the tube, preventing it from clotting and blocking the tube in-between blood tests. Of course, then the next time they come to take blood, this means that they get half a tube of saline back before the blood starts coming through properly, which is of no use to anybody. Because of this, before taking further bloods, they take an extra tube which comes out as a mix of the saline & blood, then continue with the tests - and then sometimes (if you're having a lot of bloods taken, like me) they'll re-inject the blood and saline, to minimise blood loss.
I've never written the word "blood" so much in my life as I just did in that last paragraph, but I promise I'm not just trying to gross you out; there's an interesting fact coming up. Before re-injecting the blood & saline, I was asked if I was ok with it. I was very much ok with it, because sometimes having lots of blood taken gives me a Funny Turn (in this case I was fine, probably thanks to the pint of Lucozade) and thus I like to hang on to the stuff. Turns out they always have to ask before re-injecting the blood, in case you're a Jehovah's Witness.
I have long been aware that Jehovah's Witnesses are against blood transfusions, but I'd always assumed that this was due to believing that it was wrong to have someone else's blood put into your body; I hadn't appreciated that in fact the problem is with any blood that has left the body at all, even your own. According to Wikipedia, for Jehovah's Witnesses "Blood represents life and is sacred to God. It is reserved for only one special use, the atonement for sins. When a Christian abstains from blood, they are in effect expressing faith that only the shed blood of Jesus Christ can truly redeem them and save their life".
My Lucozade & Blood Tests Experience:
Hassle: 4/5
Fun: 1/5 (It would have been a zero, but I learned an interesting fact!)
Weirdness: 2/5
Results: 2/5
Total Score: 9/20
Saturday, 19 May 2012
5 Things Healthy People Miss Out On
Over at Cushie Bloggers for the month of April, some bloggers took part in the Cushing's Awareness Challenge during April; the aim was to blog about something to do with Cushing's Disease every day of April. Well, I don't have Cushing's Disease, and it's now May. But the Challenge includes a list of prompts and suggestions of topics for bloggers with Cushing's disease to write about, and it looks like a good list to me for anyone with a pituitary adenoma to co-opt.
So, my first post from the list is in honour of both Cushing's Awareness and TSHoma Cognisance. And in fairness, I strongly suspect that awareness of thyroid-stimulating-hormone-producing pituitary adenomas is even lower than awareness of Cushing's Disease...
I like to think I am a fairly optimistic and sunny person, so instead of going down the depressing route, I have decided to start with a post focusing on the awesome aspects of being sick. Presenting:
1. You always have an excuse.
"Excuse me, madam, but you would appear to have inadvertently stabbed this man".
"Oh, I'm so sorry officer, it must be my brain tumour playing up again. Forgive me."
"Not at all, my good woman. Please continue about your business. And get well soon!"
In fact, I never have stabbed a man, but I fondly imagine that were I to do so, this is roughly how the conversation with the policeperson would go afterwards. Having a tumour in your head is rubbish, but it's one hell of an opportunity to get away with doing what you want.
Want a seat on the bus? Mention the tumour.
Late for a deadline? Mention the tumour.
Want to freak out a stranger? Mention the tumour.
In detail.
2. Improved and terrifying knowledge of medical terminology.
You know, if I didn't have a pituitary adenoma, I would never have heard of adrenocorticotrophic hormone, let alone be able to pronounce it. And now, not only do I have an expanded vocabulary for actual words, but I know the abbreviations too. I know that my form for TFT bloods will check my TSH, FT3 and FT4 - plus usually my endocrinologist requests SHBG and alpha subunit. Because that is just how he rolls.
3. A warm and fuzzy glow about UK taxation.
You know what I don't mind? When, at the end of the month, my paycheck is shrunk by several hundred pounds thanks to paying tax and National Insurance contributions. You know why I don't mind it? Because one monthly dose of lanreotide costs more than twice what I pay in tax. And that's not including the costs of my regular visits to the doctor, the nurse, the hospital, my other prescriptions, my MRI scans, my surgery, my blood tests.
I can't imagine how horrendous it would be to have to pay for this stuff in a country without a decent national healthcare system.
4. Joie De Vivre
It sounds pretty cheesy to say that being ill gives you a newfound appreciation for life. That's because it is a cheesy thing to say. However, it is also true. The feeling of achievement when, after pituitary surgery, you manage to very slowly walk the ten minutes to the nearest pub is as satisfying as learning to play the tuba. Probably more satisfying, in fact. After all, I've never met a happy tuba player.*
5. Writing this blog
I would never in a hundred years have managed to keep up writing a blog this long (since last August… that's ten months!) if I had not been ill. No matter what topic I picked, it would surely have lapsed, just like every other diary I've ever attempted to write has lapsed, usually within about a week. But writing so often has been really good for me; it's improved my style, it's made me more comfortable with just sitting down and typing - and searching for Interesting Medical Facts of the Week has taught me a hell of a lot. And being ill is what has made me keep this up. I can't ever lapse for long, because there's always going to be something I want to complain about.
_____________________________________________
*Disclaimer: I have never met a tuba player.
So, my first post from the list is in honour of both Cushing's Awareness and TSHoma Cognisance. And in fairness, I strongly suspect that awareness of thyroid-stimulating-hormone-producing pituitary adenomas is even lower than awareness of Cushing's Disease...
I like to think I am a fairly optimistic and sunny person, so instead of going down the depressing route, I have decided to start with a post focusing on the awesome aspects of being sick. Presenting:
5 THINGS HEALTHY PEOPLE MISS OUT ON
Or: Why It Is Great To Be Me and Be Ill
1. You always have an excuse.
"Excuse me, madam, but you would appear to have inadvertently stabbed this man".
"Oh, I'm so sorry officer, it must be my brain tumour playing up again. Forgive me."
"Not at all, my good woman. Please continue about your business. And get well soon!"
In fact, I never have stabbed a man, but I fondly imagine that were I to do so, this is roughly how the conversation with the policeperson would go afterwards. Having a tumour in your head is rubbish, but it's one hell of an opportunity to get away with doing what you want.
Want a seat on the bus? Mention the tumour.
Late for a deadline? Mention the tumour.
Want to freak out a stranger? Mention the tumour.
In detail.
2. Improved and terrifying knowledge of medical terminology.
You know, if I didn't have a pituitary adenoma, I would never have heard of adrenocorticotrophic hormone, let alone be able to pronounce it. And now, not only do I have an expanded vocabulary for actual words, but I know the abbreviations too. I know that my form for TFT bloods will check my TSH, FT3 and FT4 - plus usually my endocrinologist requests SHBG and alpha subunit. Because that is just how he rolls.
3. A warm and fuzzy glow about UK taxation.
You know what I don't mind? When, at the end of the month, my paycheck is shrunk by several hundred pounds thanks to paying tax and National Insurance contributions. You know why I don't mind it? Because one monthly dose of lanreotide costs more than twice what I pay in tax. And that's not including the costs of my regular visits to the doctor, the nurse, the hospital, my other prescriptions, my MRI scans, my surgery, my blood tests.
I can't imagine how horrendous it would be to have to pay for this stuff in a country without a decent national healthcare system.
4. Joie De Vivre
It sounds pretty cheesy to say that being ill gives you a newfound appreciation for life. That's because it is a cheesy thing to say. However, it is also true. The feeling of achievement when, after pituitary surgery, you manage to very slowly walk the ten minutes to the nearest pub is as satisfying as learning to play the tuba. Probably more satisfying, in fact. After all, I've never met a happy tuba player.*
5. Writing this blog
I would never in a hundred years have managed to keep up writing a blog this long (since last August… that's ten months!) if I had not been ill. No matter what topic I picked, it would surely have lapsed, just like every other diary I've ever attempted to write has lapsed, usually within about a week. But writing so often has been really good for me; it's improved my style, it's made me more comfortable with just sitting down and typing - and searching for Interesting Medical Facts of the Week has taught me a hell of a lot. And being ill is what has made me keep this up. I can't ever lapse for long, because there's always going to be something I want to complain about.
_____________________________________________
*Disclaimer: I have never met a tuba player.
Monday, 7 May 2012
IMFW: Signed In Blood
Exciting news recently about a new test to identify people's blood groups, which was allegedly inspired by Voldemort's evil self-writing diary in the Harry Potter books. When a blood sample is applied to the paper, it actually spells out the person's ABO and Rhesus blood groups, the idea being that this is far more user-friendly and should reduce misinterpretations of blood group compared to the existing tests.
 |
| Warning: side effects may include possession by the Dark Lord. |
Thursday, 26 April 2012
Top Tips for People About to Have Pituitary Surgery
Before going into hospital for your transsphenoidal pituitary surgery, you will be anxious. You will have questions. Many of them will be answered on legitimate medical sites elsewhere on the internet, so instead of regurgitating the same old advice ("Don't sneeze after surgery or your brain will shoot out of your nose", "Warning: after they've drilled through your head, it may be a little sore"), I have decided I will go down a different route, and write down the more obscure things that I wish I'd known before heading into hospital.
Consequently, I present my top tips for people about to have pituitary surgery:
1. Shave your inside elbows.
"She's gone mad," I hear you cry. "She's raving. It was probably the brain surgery that did it."
In fact, this is an entirely logical step because of all the blood tests you'll undergo after your pituitary surgery; you're basically going to be a human pincushion for a couple of days as the doctors seek to keep a very close watch on various hormone levels. This means that the post-blood-test strip of tape and cotton wool that the phlebotomist sticks over your inside elbow is going to get ripped off repeatedly, and then stuck back on. And then ripped off again, along with much of your arm hair. After the sixth time this happens in one day, you'll be wishing you looked like this.
2. Drink enough.
If this seems obvious to you, then presumably you're a normal person who gets thirsty when you haven't drunk sufficient amounts of water to keep yourself hydrated. However, I am an odd sort of person and I only really get thirsty when it's hot or I've done exercise. If neither of those conditions have been met then I can go for hours and hours without drinking and not even notice; even back when I was a teeny child, my mum would tell me off for not drinking enough.
Compounded with the fact that I don't like water, this was slightly problematic in hospital. Because of the risk of pituitary surgery inducing diabetes insipidus, your fluid balance is monitored carefully and if you're not drinking enough to keep yourself hydrated, they will put you on a drip. This is rubbish. Therefore if you don't like water, keep a supply of tastier drinks at hand. And by "tastier drinks", I mean RIBENA.
3. Always eat the custard first.
Hospital food gets a bad rep. The food at my hospital was pretty tasty really, and there was a good selection. But for some obscure reason the dessert was often served before the main. If you waited for your main meal to rock up before eating, your custard would congeal disconcertingly by the time you got to it.
So remember: you've just had brain surgery. Screw societal norms regarding the "correct" order in which to eat sweet or savory comestibles!
4. Make your visitors play musical chairs.
Again, this may initially seem nonsensical. But I was fortunate enough to have a fair few visitors in hospital (thank you guys! <3), which was lovely. However, for the most part they sat in the same chair on the left-hand side of my bed, and consequently by the end of my stay in hospital I had done my neck in from continually turning my head to the left. It was pretty painful and entirely my own fault. Make them alternate sides.
5. Get wheeled out in a wheelchair.
Because a) you'll be feeling rubbish and won't want to walk, and b) it's fun!
6. Steroids + morphine = surprisingly fun.
After waking up from surgery, initially I felt rubbish. The nurse at hand quickly gave me some morphine. By the time I was properly awake, I was pain-free, wired, and weirdly delighted that the nurse had the same first name as my mum. They took me out of the post-surgical care room and up to the main neurosurgical ward, and about half an hour after I woke up I was already texting various members of my friends and family and talking nineteen to the dozen about how unusually chirpy I felt.
7. Play your "brain surgery" card.
I regret not doing this more, in retrospect. I have no doubt that there are hours of fun to be had in pretending not to recognise household objects, friends, family, political systems and/or branches of philosophy.
I remember speaking to one friend a few weeks after my brain surgery, and I mentioned that I was always forgetting where I'd left my books. She gave me a sorrowful look and whispered, "Is that because of the surgery?"
It was disappointing to have to confess to her that no, I have in fact always been that stupid.
8. Get a free pill slicer. They are awesome.
After pituitary surgery you'll be put on steroid replacement medication in case the neurosurgeon accidentally removed your body's ability to make its own steroid hormone when required. Said pills can be broken into different-sized chunks so you can take, for example, a whole dose in the morning, half a pill at lunch, and the other half in the early afternoon. When I left hospital, I obviously looked too pathetic even to break a tiny pill in two, because they provided me with a pill slicer. You put the pill in, shut the lid, and SHAZAM! A razorblade hidden inside will slice that bad boy in twain.
I managed to lose my pill slicer after a couple of months, and I still haven't quite got over it.
Consequently, I present my top tips for people about to have pituitary surgery:
1. Shave your inside elbows.
"She's gone mad," I hear you cry. "She's raving. It was probably the brain surgery that did it."
In fact, this is an entirely logical step because of all the blood tests you'll undergo after your pituitary surgery; you're basically going to be a human pincushion for a couple of days as the doctors seek to keep a very close watch on various hormone levels. This means that the post-blood-test strip of tape and cotton wool that the phlebotomist sticks over your inside elbow is going to get ripped off repeatedly, and then stuck back on. And then ripped off again, along with much of your arm hair. After the sixth time this happens in one day, you'll be wishing you looked like this.
2. Drink enough.
If this seems obvious to you, then presumably you're a normal person who gets thirsty when you haven't drunk sufficient amounts of water to keep yourself hydrated. However, I am an odd sort of person and I only really get thirsty when it's hot or I've done exercise. If neither of those conditions have been met then I can go for hours and hours without drinking and not even notice; even back when I was a teeny child, my mum would tell me off for not drinking enough.
Compounded with the fact that I don't like water, this was slightly problematic in hospital. Because of the risk of pituitary surgery inducing diabetes insipidus, your fluid balance is monitored carefully and if you're not drinking enough to keep yourself hydrated, they will put you on a drip. This is rubbish. Therefore if you don't like water, keep a supply of tastier drinks at hand. And by "tastier drinks", I mean RIBENA.
3. Always eat the custard first.
Hospital food gets a bad rep. The food at my hospital was pretty tasty really, and there was a good selection. But for some obscure reason the dessert was often served before the main. If you waited for your main meal to rock up before eating, your custard would congeal disconcertingly by the time you got to it.
So remember: you've just had brain surgery. Screw societal norms regarding the "correct" order in which to eat sweet or savory comestibles!
4. Make your visitors play musical chairs.
Again, this may initially seem nonsensical. But I was fortunate enough to have a fair few visitors in hospital (thank you guys! <3), which was lovely. However, for the most part they sat in the same chair on the left-hand side of my bed, and consequently by the end of my stay in hospital I had done my neck in from continually turning my head to the left. It was pretty painful and entirely my own fault. Make them alternate sides.
5. Get wheeled out in a wheelchair.
Because a) you'll be feeling rubbish and won't want to walk, and b) it's fun!
6. Steroids + morphine = surprisingly fun.
After waking up from surgery, initially I felt rubbish. The nurse at hand quickly gave me some morphine. By the time I was properly awake, I was pain-free, wired, and weirdly delighted that the nurse had the same first name as my mum. They took me out of the post-surgical care room and up to the main neurosurgical ward, and about half an hour after I woke up I was already texting various members of my friends and family and talking nineteen to the dozen about how unusually chirpy I felt.
7. Play your "brain surgery" card.
I regret not doing this more, in retrospect. I have no doubt that there are hours of fun to be had in pretending not to recognise household objects, friends, family, political systems and/or branches of philosophy.
I remember speaking to one friend a few weeks after my brain surgery, and I mentioned that I was always forgetting where I'd left my books. She gave me a sorrowful look and whispered, "Is that because of the surgery?"
It was disappointing to have to confess to her that no, I have in fact always been that stupid.
8. Get a free pill slicer. They are awesome.
After pituitary surgery you'll be put on steroid replacement medication in case the neurosurgeon accidentally removed your body's ability to make its own steroid hormone when required. Said pills can be broken into different-sized chunks so you can take, for example, a whole dose in the morning, half a pill at lunch, and the other half in the early afternoon. When I left hospital, I obviously looked too pathetic even to break a tiny pill in two, because they provided me with a pill slicer. You put the pill in, shut the lid, and SHAZAM! A razorblade hidden inside will slice that bad boy in twain.
I managed to lose my pill slicer after a couple of months, and I still haven't quite got over it.
Friday, 24 February 2012
Health Update
My poor little blog is really looking quite neglected! Fortunately I had a trip to the hospital yesterday. To see a doctor, I mean, not just for fun.
After being weighed and having my blood pressure done, I was called in to see.... a doctor who is not my endocrinologist. My endocrinologist seems to be displaying classic signs of pathological demand avoidance syndrome, in that every time someone arranges an appointment for him to see me, he disappears. He's been my endocrinologist for seven months now and I've only met him once, in passing, while I was having some blood tests. Perhaps he's put off by the possessive way in which I refer to him as "my" endocrinologist, but if so then he really needs to address the problem, or how can our relationship progress to the next level?*
Anyhow, we went through my latest blood test results and, being the marvel of medical science that I undoubtedly am,** my body appears to have pulled off the neat trick of producing higher levels of thyroid hormone during treatment with a thyroid-stimulating-hormone suppressing drug than before treatment. Apparently they're not concerned, because the tumour does produce quite low levels of TSH anyway and all my thyroid hormone results are within the upper normal range, so the only way they can tell what's going on is to look at the alpha subunit, a particular protein which tends to be over-produced by TSH-producing pituitary adenomas. The test result takes 4 weeks to come through, so we have to wait to find out where I am at the moment. Over the last year or so, though, they were:
Before surgery last April: 13.00
After surgery: 8.40
This January: 5.90
What it's meant to be: 1.00 or less.
So it could be worse, could be better! Fingers crossed that the lanreotide injections are doing the trick. I get to have another MRI sometime soon (they forgot to book it in for me, apparently I was supposed to have one in February) and to go back in 2 months. Oh, and they recommended I be referred to the Ear Nose and Throat team for my stupid malingering post-surgery sinusitis. You know. The sinusistis my GP told me couldn't be related at all to the surgery... oh well. I get to explore another hospital department. Whoop whoop!
____________________________________________
*i.e. the level at which he is actually in the room when I am supposed to be meeting him.
**Shut up, I so am.
After being weighed and having my blood pressure done, I was called in to see.... a doctor who is not my endocrinologist. My endocrinologist seems to be displaying classic signs of pathological demand avoidance syndrome, in that every time someone arranges an appointment for him to see me, he disappears. He's been my endocrinologist for seven months now and I've only met him once, in passing, while I was having some blood tests. Perhaps he's put off by the possessive way in which I refer to him as "my" endocrinologist, but if so then he really needs to address the problem, or how can our relationship progress to the next level?*
Anyhow, we went through my latest blood test results and, being the marvel of medical science that I undoubtedly am,** my body appears to have pulled off the neat trick of producing higher levels of thyroid hormone during treatment with a thyroid-stimulating-hormone suppressing drug than before treatment. Apparently they're not concerned, because the tumour does produce quite low levels of TSH anyway and all my thyroid hormone results are within the upper normal range, so the only way they can tell what's going on is to look at the alpha subunit, a particular protein which tends to be over-produced by TSH-producing pituitary adenomas. The test result takes 4 weeks to come through, so we have to wait to find out where I am at the moment. Over the last year or so, though, they were:
Before surgery last April: 13.00
After surgery: 8.40
This January: 5.90
What it's meant to be: 1.00 or less.
So it could be worse, could be better! Fingers crossed that the lanreotide injections are doing the trick. I get to have another MRI sometime soon (they forgot to book it in for me, apparently I was supposed to have one in February) and to go back in 2 months. Oh, and they recommended I be referred to the Ear Nose and Throat team for my stupid malingering post-surgery sinusitis. You know. The sinusistis my GP told me couldn't be related at all to the surgery... oh well. I get to explore another hospital department. Whoop whoop!
____________________________________________
*i.e. the level at which he is actually in the room when I am supposed to be meeting him.
**Shut up, I so am.
Wednesday, 11 January 2012
More Expensive Than Uranium
I have two GPs who I see on a semi-regular basis; both excellent medical men in their way, but both with certain personal quirks that turn my regular visits from dull routine into amusing interludes. The first,* Dr. Ken, has a curious habit of continually saying "mmhm, mmhm, mmhm, mmhm" whilst you speak to him (I have actually discussed this with another patient, so I know it's not just me).
Initially, I assumed he must have gorged on peanut butter before letting me in to his office, and the curious masticating noise was the sound of him trying to detach it from the roof of his mouth. I have since been forced to revise this view, however, and now my best guess is that at some point as a medical student he must have gone on some kind of "relating to patients" course and believes that frequent low-level humming noises are a soothing way of indicating his interest and concern, and not just extremely irritating.
My other GP, Boris, has never made any unexpected murmurs, susurrations, sighs, soughs or rumbles - which is to his credit. However, he does have a somewhat quirky sense of humour; last year, when receiving my regular blood test results, he gravely informed me I was pregnant and then burst into hysterical peals of laughter. Fortunately, due to a) being used to him and b) being extremely sure I was not, I did actually find it funny, but I imagine he needs to be careful precisely who he pulls that joke on.
Today I visited Dr. Boris to get my prescription for Somatuline Autogel injections, as agreed with my endocrinologist. He looked it up in his little dictionary of medicines, looked up at me and said, "Did you know this is more expensive than uranium?"***
Never having previously considered the price of uranium (as I am neither a nuclear scientist nor intent on causing mass terror) - and slightly concerned that my GP knew the exact cost of uranium yet had to look up my medication in a book - I asked him how he knew. Apparently the food critic, Giles Coren, recently wrote a bit of a rant about Pizza Express, in which he calculated that the price they charge for extra olives makes the olives, gram for gram, more expensive than uranium - which, I imagine, means that my lanreotide injections are significantly more expensive than uranium.
I can't guarantee that this story is true, and I foolishly didn't think to ask whether this valuation applied to enriched, depleted or farm-fresh newly-mined uranium. I can't look it up now, of course; I imagine that researching current uranium prices may well attract The Wrong Kind Of Attention. Probably just using the word "uranium" six times in one blog post is bad enough.
Anyway, I got my prescription and Dr. Boris instructed me that, should I be mugged whilst transferring the lanreotide injection from the pharmacy to the GP's surgery, I may hand over my purse and phone - but I have to fight them for the syringe.
_________________________________________________________________
*I won't name them, obviously, as I have no wish to get sued. Let's call them Ken and Boris, for no reason other than that they are excellent names and that both my doctors have extreme political views at opposing ends of the spectrum.**
**N.B. this is a lie.
***I have cost the NHS an awful lot more than I've ever paid in taxes >.>
Initially, I assumed he must have gorged on peanut butter before letting me in to his office, and the curious masticating noise was the sound of him trying to detach it from the roof of his mouth. I have since been forced to revise this view, however, and now my best guess is that at some point as a medical student he must have gone on some kind of "relating to patients" course and believes that frequent low-level humming noises are a soothing way of indicating his interest and concern, and not just extremely irritating.
My other GP, Boris, has never made any unexpected murmurs, susurrations, sighs, soughs or rumbles - which is to his credit. However, he does have a somewhat quirky sense of humour; last year, when receiving my regular blood test results, he gravely informed me I was pregnant and then burst into hysterical peals of laughter. Fortunately, due to a) being used to him and b) being extremely sure I was not, I did actually find it funny, but I imagine he needs to be careful precisely who he pulls that joke on.
Today I visited Dr. Boris to get my prescription for Somatuline Autogel injections, as agreed with my endocrinologist. He looked it up in his little dictionary of medicines, looked up at me and said, "Did you know this is more expensive than uranium?"***
Never having previously considered the price of uranium (as I am neither a nuclear scientist nor intent on causing mass terror) - and slightly concerned that my GP knew the exact cost of uranium yet had to look up my medication in a book - I asked him how he knew. Apparently the food critic, Giles Coren, recently wrote a bit of a rant about Pizza Express, in which he calculated that the price they charge for extra olives makes the olives, gram for gram, more expensive than uranium - which, I imagine, means that my lanreotide injections are significantly more expensive than uranium.
I can't guarantee that this story is true, and I foolishly didn't think to ask whether this valuation applied to enriched, depleted or farm-fresh newly-mined uranium. I can't look it up now, of course; I imagine that researching current uranium prices may well attract The Wrong Kind Of Attention. Probably just using the word "uranium" six times in one blog post is bad enough.
Anyway, I got my prescription and Dr. Boris instructed me that, should I be mugged whilst transferring the lanreotide injection from the pharmacy to the GP's surgery, I may hand over my purse and phone - but I have to fight them for the syringe.
_________________________________________________________________
*I won't name them, obviously, as I have no wish to get sued. Let's call them Ken and Boris, for no reason other than that they are excellent names and that both my doctors have extreme political views at opposing ends of the spectrum.**
**N.B. this is a lie.
***I have cost the NHS an awful lot more than I've ever paid in taxes >.>
Tuesday, 13 December 2011
Let's Get Technical, Baby
Apologies for my lack of posting lately! I have been doing exams. They are now over, and my new excuse is that it's Christmas (in case you hadn't noticed). But, as of a phone call from the hospital on Wednesday last week, I have been meaning to give an update on my health. In short: my thyroid stimulating hormone levels are still normal, but I will have to start new treatment shortly... because I have high levels of the TSH alpha subunit.
"The what-now? What in god's name is that?" I hear you cry.
Don't cry.
My endocrinologists have always been cagey whenever I've tried to get them to explain what the alpha subunit actually is,* although in fairness, my shrewd personal judgement leads me to believe that this is probably less because it's a dark and terrible secret and more because they're not paid to teach biochemistry.
Anyway, the combined powers of Wikipedia and Google have provided me with the answer: it turns out that thyroid-stimulating hormone (TSH) is a dimer; a chemical compound of two identical or similar monomers: in this case, the alpha subunit, and the beta subunit. No-one wants to get bogged down in the detail, so at this point I promise not to use the word "glycoprotein" without extreme provocation.**
So: TSH is made of two kinds of stuff. And as it turns out, TSHomas (pituitary tumours which produce TSH) have a bit of a habit of producing more of the alpha subunit than would normally be expected. Normally you would expect the ratio of free alpha subunit to TSH to be less than 1. Before my surgery in April, my ratio of alpha subunit to TSH was 14:1. Currently, it's 7:1.
Obviously, 7:1 is better than 14:1. However, it is equally obviously Not Quite Right.*** Consequently it seems likely that the TSHoma is still active, and even though my total thyroid-stimulating hormone levels are within normal limits, it may still be secreting some TSH as well. Active tumour = growing tumour.
So I'm going to start having injections of some kind of somatostatin analogue again. I haven't really written about this up to now (it's on my list, promise) but for three months before my operation last year I was having monthly injections of Somatuline, the brand name for lanreotide. It's a synthetic form of a hormone naturally released by the hypothalamus,**** which inhibits the production of TSH and growth hormone, and which is used to treat pituitary adenomas which are releasing either one of those hormones. If you're lucky, it can shrink the tumours a bit - at the least, it should check their growth and can also help to make their structure less fibrous, which makes it easier for surgeons to chop them up.
It's also super expensive. When my GP first looked up how much it cost after my endocrinologist had requested a prescription, he laughed in a slightly manic way for about five minutes at the price. Awkward.
I'm going to start the injections again, probably in January, for three months, to assess whether they shrink the tumour at all and whether they bring down the high levels of alpha subunit in my blood. I'm not massively looking forward to starting again - the injections mess with your body a bit, last time I felt nauseous for three days after the first one, and they're a bit of a hassle because you have to order the injections a week in advance from the pharmacy, then drop them off at your GP's because they have to be kept in the fridge. The injections sting, they have to use a massive needle because the stuff is so thick, and you end up with a lump in your hip - basically it's injected under the skin where it sits and slowly decreases in size over the month as it gets absorbed into your system.
On the plus side, having these injections should (in theory) get rid of the last of my symptoms. And that would be very nice. I am really quite bored now of my hair falling out/heart randomly getting overexcited/headaches. As for what happens after three months, who knows. The injections are a possible long term treatment option although they are an expensive hassle and they're quite likely to give you gallstones sooner or later. So that brings you back to surgery/radiotherapy. Oi vey.
____________________________________
*Apart from an excellent title for some kind of spy film.
**Incidentally, the α subunit is thought to be the effector region responsible for stimulation of adenylate cyclase
***I must stop using these technical medical phrases.
****Somatostatin.Lol.
"The what-now? What in god's name is that?" I hear you cry.
Don't cry.
My endocrinologists have always been cagey whenever I've tried to get them to explain what the alpha subunit actually is,* although in fairness, my shrewd personal judgement leads me to believe that this is probably less because it's a dark and terrible secret and more because they're not paid to teach biochemistry.
Anyway, the combined powers of Wikipedia and Google have provided me with the answer: it turns out that thyroid-stimulating hormone (TSH) is a dimer; a chemical compound of two identical or similar monomers: in this case, the alpha subunit, and the beta subunit. No-one wants to get bogged down in the detail, so at this point I promise not to use the word "glycoprotein" without extreme provocation.**
So: TSH is made of two kinds of stuff. And as it turns out, TSHomas (pituitary tumours which produce TSH) have a bit of a habit of producing more of the alpha subunit than would normally be expected. Normally you would expect the ratio of free alpha subunit to TSH to be less than 1. Before my surgery in April, my ratio of alpha subunit to TSH was 14:1. Currently, it's 7:1.
Obviously, 7:1 is better than 14:1. However, it is equally obviously Not Quite Right.*** Consequently it seems likely that the TSHoma is still active, and even though my total thyroid-stimulating hormone levels are within normal limits, it may still be secreting some TSH as well. Active tumour = growing tumour.
So I'm going to start having injections of some kind of somatostatin analogue again. I haven't really written about this up to now (it's on my list, promise) but for three months before my operation last year I was having monthly injections of Somatuline, the brand name for lanreotide. It's a synthetic form of a hormone naturally released by the hypothalamus,**** which inhibits the production of TSH and growth hormone, and which is used to treat pituitary adenomas which are releasing either one of those hormones. If you're lucky, it can shrink the tumours a bit - at the least, it should check their growth and can also help to make their structure less fibrous, which makes it easier for surgeons to chop them up.
It's also super expensive. When my GP first looked up how much it cost after my endocrinologist had requested a prescription, he laughed in a slightly manic way for about five minutes at the price. Awkward.
I'm going to start the injections again, probably in January, for three months, to assess whether they shrink the tumour at all and whether they bring down the high levels of alpha subunit in my blood. I'm not massively looking forward to starting again - the injections mess with your body a bit, last time I felt nauseous for three days after the first one, and they're a bit of a hassle because you have to order the injections a week in advance from the pharmacy, then drop them off at your GP's because they have to be kept in the fridge. The injections sting, they have to use a massive needle because the stuff is so thick, and you end up with a lump in your hip - basically it's injected under the skin where it sits and slowly decreases in size over the month as it gets absorbed into your system.
On the plus side, having these injections should (in theory) get rid of the last of my symptoms. And that would be very nice. I am really quite bored now of my hair falling out/heart randomly getting overexcited/headaches. As for what happens after three months, who knows. The injections are a possible long term treatment option although they are an expensive hassle and they're quite likely to give you gallstones sooner or later. So that brings you back to surgery/radiotherapy. Oi vey.
____________________________________
*Apart from an excellent title for some kind of spy film.
**Incidentally, the α subunit is thought to be the effector region responsible for stimulation of adenylate cyclase
***I must stop using these technical medical phrases.
****Somatostatin.Lol.
Wednesday, 23 November 2011
Why I Love Blood Tests
One of those occasions where I wrote the post title first, then went "hmm" and sat back, doubtfully stroking the beard I don't have.* And then had to go look up the correct spelling of the word "occasion". I definitely feel it looks better with two S's.
I've never been a massive fan of blood tests, and my opinion of them hasn't exactly improved with much closer acquaintance. And trust me, diagnosing a TSH-secreting pituitary adenoma involves a very close acquaintance with the phlebotomists of your local hospital.
People are weird, so there's probably at least a couple of oddballs out there who positively enjoy having their blood weaseled away by an overgrown thumbtack, but I am not one of them.
Additionally, one of the things they mysteriously forget to mention before you undergo transsphenoidal hypophysectomy surgery - and frankly, who knows if I spellt that right - is that afterwards, you have blood tests every hour for the first six hours, then every two hours for the next twelve hours, then every four hours, etc. In layman's terms, this translates to being repeatedly woken in the middle of the night by a very nice nurse who is attempting the impossible, viz., sticking adirty clean great needle into your arm without waking you up. It is deeply unpleasant.
But I do try to see the sunny side. For instance, blood tests are much more fun than injections, especially injections into muscle. And injections of lanreotide, which really smart; it's a bit like having liquid stinging nettles injected into your hip. Blood tests are also, I imagine, fun than diptheria. In fact, once you start to think about it, blood tests come out looking positively rosy. Plus, when I go in for blood tests I get the chance to catch up with the lovely endocrine nurses at the hospital/the lovely Caribbean & Australian nurses at my GPs.
I do tend to get a bit faint after having my blood stolen, particularly if they've taken a reasonable amount - I'm okay with one vial, but there have been occasions when they've taken fourteen, which does make me a little woozy. But I've had so much practise now that I inadvertently discovered the cure - a drink of Ribena beforehand does wonders, and sugary food afterwards is also good. For best results, return from the hospital to a glass of orange juice and platter of Haribo and chocolate orange slices prepared by a lovely boyfriend <3
________________________________________________
*Actually, following a youthful fall from the monkey bars, I do in fact have a large (yet fortunately solitary) beard hair which grows from the scar tissue in my chin. Sexy.
I've never been a massive fan of blood tests, and my opinion of them hasn't exactly improved with much closer acquaintance. And trust me, diagnosing a TSH-secreting pituitary adenoma involves a very close acquaintance with the phlebotomists of your local hospital.
People are weird, so there's probably at least a couple of oddballs out there who positively enjoy having their blood weaseled away by an overgrown thumbtack, but I am not one of them.
Additionally, one of the things they mysteriously forget to mention before you undergo transsphenoidal hypophysectomy surgery - and frankly, who knows if I spellt that right - is that afterwards, you have blood tests every hour for the first six hours, then every two hours for the next twelve hours, then every four hours, etc. In layman's terms, this translates to being repeatedly woken in the middle of the night by a very nice nurse who is attempting the impossible, viz., sticking a
But I do try to see the sunny side. For instance, blood tests are much more fun than injections, especially injections into muscle. And injections of lanreotide, which really smart; it's a bit like having liquid stinging nettles injected into your hip. Blood tests are also, I imagine, fun than diptheria. In fact, once you start to think about it, blood tests come out looking positively rosy. Plus, when I go in for blood tests I get the chance to catch up with the lovely endocrine nurses at the hospital/the lovely Caribbean & Australian nurses at my GPs.
I do tend to get a bit faint after having my blood stolen, particularly if they've taken a reasonable amount - I'm okay with one vial, but there have been occasions when they've taken fourteen, which does make me a little woozy. But I've had so much practise now that I inadvertently discovered the cure - a drink of Ribena beforehand does wonders, and sugary food afterwards is also good. For best results, return from the hospital to a glass of orange juice and platter of Haribo and chocolate orange slices prepared by a lovely boyfriend <3
________________________________________________
*Actually, following a youthful fall from the monkey bars, I do in fact have a large (yet fortunately solitary) beard hair which grows from the scar tissue in my chin. Sexy.
Friday, 18 November 2011
Owner of A Lonely Heart: Attempts at Diagnosis
When I was a very small child, a combination of my bad hearing and an obsession with ponies meant that I thought the classic Yes song Owner of a Lonely Heart was actually called Owner of a Lonely Horse. Ah, the folly of youth.
As the years went by, I became increasingly good at distinguishing between the hollow muscular organ which pumps blood through the circulatory system, and the large solid-hooved herbivorous ungulate mammal. No doubt this helped enormously when it came to talking to the doctors about my heart problems. Anyway. At the end of my previous post on the subject of my lengthy road to diagnosis, I had left my local hospital's A&E department with a heartrate of 140 and no explanation...
The next day, I went to my GP, who prescribed beta-blockers. Going through my symptoms (rapid heartrate, tremors, fatigue, hair loss, etc) it seemed that thyroid problems were an obvious possibility. I'd had my thyroid levels tested at A&E and they came back fine, but my GP checked again. They were still fine.
And that was the problem: in fact, my levels of thyroid hormone (free T3 and T4) were much too high. But when doctors suspect you have too much thyroid hormone - hyperthyroidism - that's not what they look at. Instead, they test your thyroid-stimulating hormone (TSH) levels. Low TSH implies hyperthyroidism (because your body is trying to lower your thyroid levels by producing less TSH) while high TSH implies hypothyroidism (because your body is trying to increase your thyroid levels).
Unfortunately, my TSH level was within normal ranges, even though the whole time I had a tumour sitting on my pituitary gland, giggling frantically to itself and oozing TSH with the enthusiasm and verve of a naughty child left unattended with a box of felt tips and a newly papered wall. It was on the high end of normal, but without measuring the T3 and T4 you'd never realise that it was too high for my body. I should point out at this stage that I don't blame my doctor for not doing the other blood tests. A pituitary adenoma producing TSH (a.k.a. TSHoma) is a one in a million illness.*
It's not my doctor's fault that he didn't recognise how incredibly special I am.**
So the next obvious possibility was that my sinus tachycardia (rapid heartrate) could be due to - gasp - a heart problem! And boy, did they ever check me out. I wore 24-hour heart monitors on several occassions - once I was wearing one when I went to a formal dinner, and had an interesting half-hour beforehand trying to find a way to conceal the bloody great thing using only a lace bolero and my native wit - and I had an ultrasound scan of my heart. Ultrasound heart scans are pretty cool to look at, but I can't help thinking that they must be more fun for men, who (in most cases) don't have boobs. Boobs are not usually a problem, but they aren't half inconvenient when someone's trying to use The Power Of Sound to examine the circulatory organ located somewhere beneath one of them.
After six months I finally got to see a cardiologist. He told me that I didn't have a heart problem, that it was almost certainly hormonal and I should have further blood tests, and that I should stop taking my beta blockers.
Two out of three of those statements were correct.
I'm still not entirely sure why he ordered me to stop taking my pills immediately, when every other doctor I've seen since has emphasized the importance of coming off beta blockers slowly to prevent rebound tachycardia. And equally, I'm not sure why I didn't protest more. Regardless: I came off the beta blockers, spent a week feeling as though walking across a room was a labour worthy of Hercules, then angrily phoned the cardiology department and insisted that I was going back on the bloody medication.
But despite this slight hiccup, progress had been made. The cardiologist had ordered the right blood tests. I was referred to endocrinology...
UPDATE: You can click here to read about how I finally got a diagnosis. Or click here to go back and read about my first trip to hospital.
_________________________________________________
*In fact, a friend of mine who's a medical student told me that one day, when a group of med students were med studenting, a patient's symptoms were described and they were asked for possible diagnoses. One girl suggested a TSHoma. The doctor's response: "Don't be ridiculous, that never happens." I asked my friend if she stepped in to mention that she knew someone with a TSHoma. She did not, apparently because the girl who suggested it as a diagnosis was a bit of a know-it-all and was overdue a put-down. Of such fine things are doctors made.
**Interpret "special" as you will...
As the years went by, I became increasingly good at distinguishing between the hollow muscular organ which pumps blood through the circulatory system, and the large solid-hooved herbivorous ungulate mammal. No doubt this helped enormously when it came to talking to the doctors about my heart problems. Anyway. At the end of my previous post on the subject of my lengthy road to diagnosis, I had left my local hospital's A&E department with a heartrate of 140 and no explanation...
The next day, I went to my GP, who prescribed beta-blockers. Going through my symptoms (rapid heartrate, tremors, fatigue, hair loss, etc) it seemed that thyroid problems were an obvious possibility. I'd had my thyroid levels tested at A&E and they came back fine, but my GP checked again. They were still fine.
And that was the problem: in fact, my levels of thyroid hormone (free T3 and T4) were much too high. But when doctors suspect you have too much thyroid hormone - hyperthyroidism - that's not what they look at. Instead, they test your thyroid-stimulating hormone (TSH) levels. Low TSH implies hyperthyroidism (because your body is trying to lower your thyroid levels by producing less TSH) while high TSH implies hypothyroidism (because your body is trying to increase your thyroid levels).
Unfortunately, my TSH level was within normal ranges, even though the whole time I had a tumour sitting on my pituitary gland, giggling frantically to itself and oozing TSH with the enthusiasm and verve of a naughty child left unattended with a box of felt tips and a newly papered wall. It was on the high end of normal, but without measuring the T3 and T4 you'd never realise that it was too high for my body. I should point out at this stage that I don't blame my doctor for not doing the other blood tests. A pituitary adenoma producing TSH (a.k.a. TSHoma) is a one in a million illness.*
It's not my doctor's fault that he didn't recognise how incredibly special I am.**
So the next obvious possibility was that my sinus tachycardia (rapid heartrate) could be due to - gasp - a heart problem! And boy, did they ever check me out. I wore 24-hour heart monitors on several occassions - once I was wearing one when I went to a formal dinner, and had an interesting half-hour beforehand trying to find a way to conceal the bloody great thing using only a lace bolero and my native wit - and I had an ultrasound scan of my heart. Ultrasound heart scans are pretty cool to look at, but I can't help thinking that they must be more fun for men, who (in most cases) don't have boobs. Boobs are not usually a problem, but they aren't half inconvenient when someone's trying to use The Power Of Sound to examine the circulatory organ located somewhere beneath one of them.
After six months I finally got to see a cardiologist. He told me that I didn't have a heart problem, that it was almost certainly hormonal and I should have further blood tests, and that I should stop taking my beta blockers.
Two out of three of those statements were correct.
I'm still not entirely sure why he ordered me to stop taking my pills immediately, when every other doctor I've seen since has emphasized the importance of coming off beta blockers slowly to prevent rebound tachycardia. And equally, I'm not sure why I didn't protest more. Regardless: I came off the beta blockers, spent a week feeling as though walking across a room was a labour worthy of Hercules, then angrily phoned the cardiology department and insisted that I was going back on the bloody medication.
But despite this slight hiccup, progress had been made. The cardiologist had ordered the right blood tests. I was referred to endocrinology...
UPDATE: You can click here to read about how I finally got a diagnosis. Or click here to go back and read about my first trip to hospital.
_________________________________________________
*In fact, a friend of mine who's a medical student told me that one day, when a group of med students were med studenting, a patient's symptoms were described and they were asked for possible diagnoses. One girl suggested a TSHoma. The doctor's response: "Don't be ridiculous, that never happens." I asked my friend if she stepped in to mention that she knew someone with a TSHoma. She did not, apparently because the girl who suggested it as a diagnosis was a bit of a know-it-all and was overdue a put-down. Of such fine things are doctors made.
**Interpret "special" as you will...
Friday, 11 November 2011
My Head Revisited: First Trip to Hospital
I have set this post to appear online at precisely 11.11am on the 11/11/11. If I could define it down to the second, believe me I would. Because I am lame that way. Anyhow. On to the story...
***
In January 2010, a chain of events was set in motion which led to the first of my many trips to hospital and, incidentally, the first time I tried sushi. Of the two experiences, I preferred the latter. From what I've seen, hospital visits rarely come with a side of pickled ginger.
And I love pickled ginger.
Sadly I can no longer remember the date in question, but I think it was around the 18th January; I was back at university and, being a studious and dilligent character, I had spent the entire day sitting in my room reading books about Old English poetry. Consequently, I couldn't quite work out why, ever since I'd woken up, my heart had been beating as fast as though I'd just run for the bus.
At about four o'clock, I used the excellent online stopwatch to work out that my heartrate was around 140 beats per minute. So I decided to do what any sane individual would do when their local doctor's practice is a two-minute walk away. I called NHS Direct.
NHS Direct sent me to the doctors. Feeling like a bit of an idiot, I ambled into the reception, was immediately rushed in to see the nurse (ever wanted to skip the queue? Just develop heart problems!)* and found myself wired up to an EKG, which looked rather like some kind of creepy mechanical chest octopus. I sat there for a few minutes and the nurse agreed that yes, my heart was rather speedy. Then I was sent to a doctor, who took a look at the creepy mechanical chest octopus printout and agreed that yes, my heart was indeed rather speedy.
So the doctor sent me to the hospital. My very nice college booked and paid for the taxi to take me to A&E and I grabbed my very nice friend Cherry to accompany me.
"Heart problems" is one of those magical phrases that gets you rushed through A&E much faster than, say, a mere broken bone or accidental breadknife incident - although of course it does mean that, as an entirely healthy-looking young person, you're liable to get a few evils from the folk who've been waiting there, oozing gently, for an hour.
Once I went through to see a doctor, the fun really started. Immediate assumptions were that either:
1) I must be having a panic attack.
or
2) I must have taken some kind of exciting illicit substance.
I think that option 1 was rapidly discounted due to the carefree nonchalance with which I munched my way through a packet of McCoys** and giggled as the doctor on duty made me blow through a small tube and massage my neck in an attempt to get my heartrate down. Of course, no matter how many times I insisted that option 2 was not an option, they refused to believe me.
Eventually they admitted defeat and sent me deeper into the hospital, where I got a whole bed to myself. Yay! I had a smorgasbord of blood tests and was wired up to another heartrate monitor which, annoyingly, was set to beep frantically any time my heartrate went over 140bpm. As it spent the whole time hovering around the 140 mark, this quickly got extremely irritating.
Cherry kindly volunteered to read aloud my book of translated Old English poetry to me, which resulted in her learning quite a lot of new and exciting vocabulary, like "seraphim", "fetters", and "vassal". Quite inexplicably, she lost interest only partway through a poem.
I sat in the hospital, waiting for my blood test results to come back, until about 11 o'clock at night. The doctors weren't sure whether I'd have to stay overnight, and so Cherry, as well as looking after me very well, (although I can never forgive her lack of interest in Anglo-Saxon literature) also had the fun job of phoning my parents and boyfriend, to let them know what was going on.
Finally, late at night, having had no dinner, it was announced that all my blood tests had come back fine, they had no idea what the hell was wrong with me, and that I should go home. If my heartrate was still fast in the morning, I was told to go back to the doctors.
It was good to be able to phone my parents and reassure them that I was not on death's door, but attempting to go to sleep with a heartrate of 140 is virtually impossible, and I was not reassured when, the next day, the doctor incredulously asked me "they let you go home from hospital with a heartrate of 140 and no medication?", with a look of horror on his face.
But more of that at a later date...
UPDATE: Click here to read my next post about getting a diagnosis. Or click here to go back and read more about my initial symptoms.
________________________________________________________________________
*N.B. This doesn't work as well in the supermarket.
**Incidentally, I hadn't noticed until recently that McCoys advertise themselves as "man crisps". WTF. Seriously, are their marketing team like five years old? Wikipedia, my one true love, tells me that McCoys are, and I quote, 'promoted by United Biscuits*** "as the only overtly male-targeted crisp brand"'. Don't believe anyone would say something that stupid, let alone base an ad campaign around it? Here's the website.
***Words fail me.
***
In January 2010, a chain of events was set in motion which led to the first of my many trips to hospital and, incidentally, the first time I tried sushi. Of the two experiences, I preferred the latter. From what I've seen, hospital visits rarely come with a side of pickled ginger.
And I love pickled ginger.
Sadly I can no longer remember the date in question, but I think it was around the 18th January; I was back at university and, being a studious and dilligent character, I had spent the entire day sitting in my room reading books about Old English poetry. Consequently, I couldn't quite work out why, ever since I'd woken up, my heart had been beating as fast as though I'd just run for the bus.
At about four o'clock, I used the excellent online stopwatch to work out that my heartrate was around 140 beats per minute. So I decided to do what any sane individual would do when their local doctor's practice is a two-minute walk away. I called NHS Direct.
NHS Direct sent me to the doctors. Feeling like a bit of an idiot, I ambled into the reception, was immediately rushed in to see the nurse (ever wanted to skip the queue? Just develop heart problems!)* and found myself wired up to an EKG, which looked rather like some kind of creepy mechanical chest octopus. I sat there for a few minutes and the nurse agreed that yes, my heart was rather speedy. Then I was sent to a doctor, who took a look at the creepy mechanical chest octopus printout and agreed that yes, my heart was indeed rather speedy.
So the doctor sent me to the hospital. My very nice college booked and paid for the taxi to take me to A&E and I grabbed my very nice friend Cherry to accompany me.
"Heart problems" is one of those magical phrases that gets you rushed through A&E much faster than, say, a mere broken bone or accidental breadknife incident - although of course it does mean that, as an entirely healthy-looking young person, you're liable to get a few evils from the folk who've been waiting there, oozing gently, for an hour.
Once I went through to see a doctor, the fun really started. Immediate assumptions were that either:
1) I must be having a panic attack.
or
2) I must have taken some kind of exciting illicit substance.
I think that option 1 was rapidly discounted due to the carefree nonchalance with which I munched my way through a packet of McCoys** and giggled as the doctor on duty made me blow through a small tube and massage my neck in an attempt to get my heartrate down. Of course, no matter how many times I insisted that option 2 was not an option, they refused to believe me.
Eventually they admitted defeat and sent me deeper into the hospital, where I got a whole bed to myself. Yay! I had a smorgasbord of blood tests and was wired up to another heartrate monitor which, annoyingly, was set to beep frantically any time my heartrate went over 140bpm. As it spent the whole time hovering around the 140 mark, this quickly got extremely irritating.
Cherry kindly volunteered to read aloud my book of translated Old English poetry to me, which resulted in her learning quite a lot of new and exciting vocabulary, like "seraphim", "fetters", and "vassal". Quite inexplicably, she lost interest only partway through a poem.
I sat in the hospital, waiting for my blood test results to come back, until about 11 o'clock at night. The doctors weren't sure whether I'd have to stay overnight, and so Cherry, as well as looking after me very well, (although I can never forgive her lack of interest in Anglo-Saxon literature) also had the fun job of phoning my parents and boyfriend, to let them know what was going on.
Finally, late at night, having had no dinner, it was announced that all my blood tests had come back fine, they had no idea what the hell was wrong with me, and that I should go home. If my heartrate was still fast in the morning, I was told to go back to the doctors.
It was good to be able to phone my parents and reassure them that I was not on death's door, but attempting to go to sleep with a heartrate of 140 is virtually impossible, and I was not reassured when, the next day, the doctor incredulously asked me "they let you go home from hospital with a heartrate of 140 and no medication?", with a look of horror on his face.
But more of that at a later date...
UPDATE: Click here to read my next post about getting a diagnosis. Or click here to go back and read more about my initial symptoms.
________________________________________________________________________
*N.B. This doesn't work as well in the supermarket.
**Incidentally, I hadn't noticed until recently that McCoys advertise themselves as "man crisps". WTF. Seriously, are their marketing team like five years old? Wikipedia, my one true love, tells me that McCoys are, and I quote, 'promoted by United Biscuits*** "as the only overtly male-targeted crisp brand"'. Don't believe anyone would say something that stupid, let alone base an ad campaign around it? Here's the website.
***Words fail me.
Sunday, 2 October 2011
Hot Off The Press
I have struggled to write an introductory sentence to this post, and having tried and subsequently deleted four separate attempts, I've decided to do what I should have done in my German A Level exam and Just Get On With It.*
The Bad News
Just over a month ago I had a phone call from one of the many endocrinologists who like to talk about me behind my back (they call it having "Multi-Disciplinary Team Meetings", but I know the truth). Unfortunately, despite my surgery in April, my recent MRI has shown there's still a lot of tumour left. The tumour originally had an "area of cystic degeneration" (i.e. it was liquid inside like some kind of hideous chocolate fondant pudding) and although they managed to get rid of that, pretty much everything else (ie. the actual main bit of the adenoma) is still there. Which is obviously really rubbish. I'm not exactly surprised; although some of my symptoms have improved a bit since the operation, I am nowhere near better yet. But it's still disappointing, especially as the surgeons were optimistic that it had been a success. When you've had your skull drilled into, you expect results!
The Good News
The rather more surprising news came when I was at college a couple of weeks ago. I was sitting in a three-hour-long lecture given by a woman whose incredibly shouty teaching style implies that she may have been a sergeant major in a previous life. My phone went off; I dashed out, in the happy knowledge that midday phone calls are almost always from the hospital. It was indeed my charming endocrinologist, to inform me that the blood tests I had done a few days previously had come back completely normal. My thyroid hormone levels were all fine.
Obviously this was something of a (very welcome) shock, seeing as I've still got a lot of symptoms - my heartrate is improved but still high, I still shake and my hair is still falling out pretty badly. Apparently it can take a really long time for symptoms to clear up, even after your hormone levels are normal. Darnit!
From what my endocrinologist said, this is definitely A Good Thing. Apparently sometimes this kind of pituitary adenoma does seem to switch off-and-on in their production of hormones, so it's possible that my levels of thyroid hormone will go back up. On the other hand, it's not impossible that the tumour is finally paying attention to the Cease And Desist notices which the rest of of my body has been sending it for years. Even if it does start producing hormones again, at least my body will have had a bit of a break.
I have been trying not to get too excited about this and resign myself to the fact that, chances are, it will start up making hormones again. But it is kind of a challenge not to prance around a little bit. I was due to have a range of exciting metabolic tests plus a PET scan; those have all been cancelled. Instead of spending several hours in a tube being irradiated, I will be having blood tests every few weeks to monitor my hormone levels. The downside of this: it means that I shall spend several nervous days fretting about what the results will be.
Blood tests are on tuesday, not sure when the results will get back but I'll update this as soon as I know!
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* For those of you interested in my youthful academic failures (and let's face it, who wouldn't be?) I managed to get a D in one German A Level paper about the Nazis because I spent the first forty-five minutes of the exam endlessly trying to write the first sentence and then crossing it out in disgust. The only German phrase that kept popping into my head was "Hitler beging Selbstmord",** but as the question was about the siege of Stalingrad, this was not helpful.
**"Hitler committed suicide"
The Bad News
Just over a month ago I had a phone call from one of the many endocrinologists who like to talk about me behind my back (they call it having "Multi-Disciplinary Team Meetings", but I know the truth). Unfortunately, despite my surgery in April, my recent MRI has shown there's still a lot of tumour left. The tumour originally had an "area of cystic degeneration" (i.e. it was liquid inside like some kind of hideous chocolate fondant pudding) and although they managed to get rid of that, pretty much everything else (ie. the actual main bit of the adenoma) is still there. Which is obviously really rubbish. I'm not exactly surprised; although some of my symptoms have improved a bit since the operation, I am nowhere near better yet. But it's still disappointing, especially as the surgeons were optimistic that it had been a success. When you've had your skull drilled into, you expect results!
The Good News
The rather more surprising news came when I was at college a couple of weeks ago. I was sitting in a three-hour-long lecture given by a woman whose incredibly shouty teaching style implies that she may have been a sergeant major in a previous life. My phone went off; I dashed out, in the happy knowledge that midday phone calls are almost always from the hospital. It was indeed my charming endocrinologist, to inform me that the blood tests I had done a few days previously had come back completely normal. My thyroid hormone levels were all fine.
Obviously this was something of a (very welcome) shock, seeing as I've still got a lot of symptoms - my heartrate is improved but still high, I still shake and my hair is still falling out pretty badly. Apparently it can take a really long time for symptoms to clear up, even after your hormone levels are normal. Darnit!
From what my endocrinologist said, this is definitely A Good Thing. Apparently sometimes this kind of pituitary adenoma does seem to switch off-and-on in their production of hormones, so it's possible that my levels of thyroid hormone will go back up. On the other hand, it's not impossible that the tumour is finally paying attention to the Cease And Desist notices which the rest of of my body has been sending it for years. Even if it does start producing hormones again, at least my body will have had a bit of a break.
I have been trying not to get too excited about this and resign myself to the fact that, chances are, it will start up making hormones again. But it is kind of a challenge not to prance around a little bit. I was due to have a range of exciting metabolic tests plus a PET scan; those have all been cancelled. Instead of spending several hours in a tube being irradiated, I will be having blood tests every few weeks to monitor my hormone levels. The downside of this: it means that I shall spend several nervous days fretting about what the results will be.
Blood tests are on tuesday, not sure when the results will get back but I'll update this as soon as I know!
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* For those of you interested in my youthful academic failures (and let's face it, who wouldn't be?) I managed to get a D in one German A Level paper about the Nazis because I spent the first forty-five minutes of the exam endlessly trying to write the first sentence and then crossing it out in disgust. The only German phrase that kept popping into my head was "Hitler beging Selbstmord",** but as the question was about the siege of Stalingrad, this was not helpful.
**"Hitler committed suicide"
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