Another hilarious hospital moment: so on Friday I was heading to London for a friend's wedding (congratulations Mrs X!). The wedding wasn't until four, but I was doing the bride's hair and makeup and consequently heading down there nice and early. I felt almost certain that the hospital would attempt to phone me during the ceremony, because their phone call timing is always so hilariously dire. I am happy to report that they did not! Hurrah! Instead they called me just as I was trying to get onto a train, juggling three bags, one of which had to be kept upright at all times, and a cup of hot coffee.
Anyway, I made it to a seat without dropping the phone or spilling hot coffee all over my dress, and very proud I was too. The best part of the phone call was the beginning, which went like this:
ME: Hello?
ENDOCRINOLOGIST: Hiya, is this an OK time to talk?
ME: Yes, now is fine! (I am quite the liar)
ENDOCRINOLOGIST: SO I was just calling to let you know that I've confirmed the date for you to come in for your overnight testing on the 3rd to the 4th July-
ME: I'm sorry, did you say the 3rd to the 4th?
ENDOCRINOLOGIST: Yes, the 3rd to the 4th July, as we agreed on Monday?
ME: On Monday you told me it would be the 2nd to the 3rd...
ENDOCRINOLOGIST: Oh, did I? Sorry, it's actually the 3rd to the 4th. I'm always doing things like that, haha!
FACEPALM
Fortunately I could do the 3rd-4th as well, although I had to cancel plans to have dinner with a couple of my friends on the evening of the 3rd (sorry guys!). But I have to admit I was slightly taken aback at the fact that the endocrinologist didn't even inquire whether the new date suited me, despite the fact I would obviously have to re-clear it with work etc. She just assumed there would be no problems.
Perhaps at this point I should reiterate the fact that the hospital I'm treated at is in the main very good, with regards to treatment, explaining things, liaising across different departments, making sure I'm seen by multiple members of the endocrinology team etc. The nurses there are absolutely lovely, and when I had my surgery they really did look after me well. It's only in the administrative context that they fall down so abysmally, and I guess if it's a choice between a hospital providing very good treatment but being rubbish at arranging appointments, or vice versa, we all know which we'd prefer.
But anyway. The long and the short of it is that I will be going into hospital next Tuesday afternoon and staying in til around four o'clock on Wednesday. They've managed to arrange it so I will have my first PET scan on Wednesday so I won't have to come in again on a different day, which is good news. As for precisely what tests they are going to do, they've been kind of vague on the details but have said they'll send me leaflets on them; it's going to include a further pituitary MRI, some kind of body composition scan (I am now slightly afraid they'll tell me I'm composed of 90% fat), along with another bone density scan I think, and what I believe is technically referred to as a "shitload" of bloodtests.
I'm supposed to come off the beta blockers from the 31st and not take them at all until after my last set of blood tests on the 4th, which is going to SUCK. I have to travel through London on the 31st and I am really not looking forward to it now. I'm frequently finding I have a resting heartrate of about 120bpm at the moment and I've had to double my daily dose of beta blockers compared to what I was taking when I was on the lanreotide. Erk. I have expressed my annoyance on here previously at the fact that doctors really don't understand how rubbish tachycardia can make you feel; it just makes absolutely everything feel like really hard work. I'm also slightly suspicious that when I get there they might try and make me run on a treadmill or something (someone I work with had metabolic testing at the same hospital in the same facility and that's what they made her do) which without beta blockers would beeven less fun than usual!
So I'm going to try to remember to take my camera along with me to the hospital and take some pictures while I'm there, if they'll let me! Other people with medical type blogs always post pictures of their scans or having tests done or whatever and I never do, so I am determined to have a bash at it. If worst comes to worst I shall at least endeavour to get some exciting shots of my hospital bed...
Showing posts with label beta blockers. Show all posts
Showing posts with label beta blockers. Show all posts
Tuesday, 26 June 2012
Thursday, 21 June 2012
Progress!
I finally had a phone call from the hospital on Monday. I was offered a timeslot for my overnight stay and all the various tests they want to do on the 2nd-3rd of July. Alas, they can't do the PET scan on that day because the tracer they use comes in batches sufficient for two people, so they have to match you up with someone else who needs the same scan before they do it. So we're looking at doing the PET scan on the 10th July instead.
Good news!
It was a slightly disconcerting phone call; the endocrinologist asked me if I could confirm that the dates would suit me on the spot, and I said that I was pretty sure they would be fine but that I would need to check it out with work before I could be 100% certain. This seemed to genuinely confuse her. Equally strange was when she asked me if I was on any medication; I replied that I'm on propranolol, a beta blocker. She said that it could interfere with the tests and I would have to stop taking it for three days; so I said that although I was willing to give it a go, I would probably find it quite difficult to not take any for three days. This really baffled her - she asked me what I was taking it for. I said tachycardia (fast heartbeat) - but I'm pretty sure if I had said that I was taking it to keep the little green men out of my ears, she couldn't have found that more peculiar. It was strange, because this was something I had already discussed with the endocrinologist who originally asked me to have these tests - and he said that if I found it difficult to get by without it then they'd just not do some of the tests.
Ironically, my heart tends to operate on a bit of a timelag and takes a while to show any effect from my thyroid levels either increasing or decreasing, and it has only started to really go a lot faster in the last two weeks or so - which means that if they'd just organised the damn tests when they said they would, I might have been able to cautiously get by. However, I will be travelling through London on the 1st July with heavy bags and that is stressful enough even when your resting heartrate's not 120bpm.
Anyway, the long and the short of it is that she said that these dates "still need to be confirmed" with the clinical research facility place where I will be going (how exciting) and that she would call me back and let me know when they're definite and also tell me more about what exact tests they will be doing. That was on Monday. Today is Thursday. I am really hoping that doesn't mean there is a problem with the dates.
Good news!
It was a slightly disconcerting phone call; the endocrinologist asked me if I could confirm that the dates would suit me on the spot, and I said that I was pretty sure they would be fine but that I would need to check it out with work before I could be 100% certain. This seemed to genuinely confuse her. Equally strange was when she asked me if I was on any medication; I replied that I'm on propranolol, a beta blocker. She said that it could interfere with the tests and I would have to stop taking it for three days; so I said that although I was willing to give it a go, I would probably find it quite difficult to not take any for three days. This really baffled her - she asked me what I was taking it for. I said tachycardia (fast heartbeat) - but I'm pretty sure if I had said that I was taking it to keep the little green men out of my ears, she couldn't have found that more peculiar. It was strange, because this was something I had already discussed with the endocrinologist who originally asked me to have these tests - and he said that if I found it difficult to get by without it then they'd just not do some of the tests.
Ironically, my heart tends to operate on a bit of a timelag and takes a while to show any effect from my thyroid levels either increasing or decreasing, and it has only started to really go a lot faster in the last two weeks or so - which means that if they'd just organised the damn tests when they said they would, I might have been able to cautiously get by. However, I will be travelling through London on the 1st July with heavy bags and that is stressful enough even when your resting heartrate's not 120bpm.
Anyway, the long and the short of it is that she said that these dates "still need to be confirmed" with the clinical research facility place where I will be going (how exciting) and that she would call me back and let me know when they're definite and also tell me more about what exact tests they will be doing. That was on Monday. Today is Thursday. I am really hoping that doesn't mean there is a problem with the dates.
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...
Thursday, 20 October 2011
Performance-Enhancing Drugs
I'm proud to announce that, as of last Friday, I am no longer on steroids. Not because I don't care about maintaining a terrifyingly muscular physique a la Jodie Marsh*, but because my endocrinologist has, after stealing a lot of my blood, confirmed that six months after my surgery, my pituitary gland is successfully producing adrenocorticotrophic hormone (ACTH) on demand. Or, in layman's terms: The Surgeon Did Not Fuck Up.
This is good news, because ACTH is needed for the body to produce cortisol, which is needed for the body to not collapse, flail around, and then die. Consequently, it's generally thought that the safest thing to do is to give replacement cortisol treatment to everyone who's had pituitary surgery until you can be 100% sure they don't need it any more. As well as coming off the steroids, my monthly prescription bill will be further reduced over the next week or so as I wean myself off the beta blockers I currently take (to slow down my overenthusiastic heart).
Obviously I was delighted to hear that I would once again be eligible to compete in high-level international sporting events and resolved to do so at the earliest opportunity.** However, just days after I resolved to dig out my skipping rope and get cracking with some sort of training montage, I was surprised to find out that as long as I'm still on beta-blockers I'm excluded from taking part in some sporting events.
Having always associated beta-blockers with elderly folk post-heart-attack, I was surprised to find out that their effects, i.e. slowing heartrate and reducing tremor, are highly desired in, and consequently banned from, Olympic sports including gymnastics, shooting, wrestling, ski jumping (?) and curling.***
So I'll have to wait a few more days before starting my career as a wrestler. Damn.
__________________________________________________________________
*Against whose high standards I judge all my life decisions.
**Just as soon as the Global Egg and Spoon Race Championships get going
again.
***The fat kid of international sporting endeavour.
This is good news, because ACTH is needed for the body to produce cortisol, which is needed for the body to not collapse, flail around, and then die. Consequently, it's generally thought that the safest thing to do is to give replacement cortisol treatment to everyone who's had pituitary surgery until you can be 100% sure they don't need it any more. As well as coming off the steroids, my monthly prescription bill will be further reduced over the next week or so as I wean myself off the beta blockers I currently take (to slow down my overenthusiastic heart).
Obviously I was delighted to hear that I would once again be eligible to compete in high-level international sporting events and resolved to do so at the earliest opportunity.** However, just days after I resolved to dig out my skipping rope and get cracking with some sort of training montage, I was surprised to find out that as long as I'm still on beta-blockers I'm excluded from taking part in some sporting events.
Having always associated beta-blockers with elderly folk post-heart-attack, I was surprised to find out that their effects, i.e. slowing heartrate and reducing tremor, are highly desired in, and consequently banned from, Olympic sports including gymnastics, shooting, wrestling, ski jumping (?) and curling.***
So I'll have to wait a few more days before starting my career as a wrestler. Damn.
__________________________________________________________________
*Against whose high standards I judge all my life decisions.
**Just as soon as the Global Egg and Spoon Race Championships get going
again.
***The fat kid of international sporting endeavour.
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