Today's Interesting Medical Fact of the Week is dedicated to my lovely boyfriend. No, he doesn't have a weird and unusual illness, or even just a particularly hilarious deformity - but he does have a deodorant made from Japanese sea minerals.
"What are Japanese sea minerals?" I said.
"I don't know," he said. "But it doesn't have aluminium in."
"Do deodorants normally have aluminium in?" I asked, exposing my ignorance.
"Yes," he said. "It gives you cancer."
At that point, my brain practically exploded and I resolved to investigate whether or not he was just winding me up. And thus, my next Interesting Medical Fact was born.
As it turns out, aluminium is a common ingredient in anti-perspirants rather than simply deodorants. But here's the thing: it can be absorbed through the skin, and it's been suggested that there may be a link between use of such products and the development of breast cancer. The short story is that there's no conclusive evidence for a link between antiperspirant use and breast cancer.
Looking at Wikipedia, though, it's not just cancer you have to be worried about if too much aluminium gets into your system. It's a neurotoxin, high levels of aluminium are present in the brains of many Alzheimer's patients - and one study linked the long-term use of antiperspirants containing aluminium with the accumulation of levels of alumium that may increase the risk of Alzheimer's disease. The good news, however, is that a causal relationship between aluminium and Alzheimer's has not been found.
Finally, the only concrete evidence for these antperspirants adversely affecting your health: renal dysfunction. No, aluminium doesn't cause it, but people with renal dysfunction are advised to consult their doctor before using deodorants which contain aluminium. Damaged kidneys cannot clear aluminium from your body as effectively, and thus patients with kidney failure may be at increased risk of building up potentially dangerous levels of aluminium in their systems.
Of course, the fact that no proof has yet been found doesn't mean that no proof will be found for a link between aluminium anti-perspirants and cancer or Alzheimers. But for the time being, they are officially considered safe.
Monday, 30 January 2012
Thursday, 26 January 2012
Side Effects of Lanreotide Injections
Long time no post! Regular readers will no doubt be waiting, almost breathless with excitement, to find out how my lanreotide injection on Monday went. Did I get a nice nurse? Did she remember to leave the syringe out of the fridge beforehand? Did I spend the next two days feeling nauseous? Will I find something more exciting to write about?
Long story short: yes; yes; no; find out next week in another exciting installment of Pituitary Ademoaner: The Blog!
In any case, the lanreotide has been rushing around my system for a few days. I fondly imagine it coursing through my veins, up to the pituitary gland, and beating my pituitary adenoma around the head, shouting "Stop it! Stop it now! Bad pituitary!" much like a miniature Punch and Judy show without the part about the crocodile and sausages.
I don't have a list of the side effects of Somatuline lanreotide injections, although I seem to remember that they are many and hideous. I'm pretty sure gallstones and feeling sick are the major issues.
But medicines should have side effects; it's only right and proper. I'm pretty sure that if I ever opened a packet of pills, opened up the little leaflet inside* and found that the list of potential side effects included neither coma nor death, I would hardly consider it medication at all. This is just one of the reasons I mistrust homeopathy. If it can't kill you, I refuse to believe it can cure you, either.**
So I present my personal list of the potential side effects of lanreotide injections, which I scarcely need say is not an official list and may in fact be completely fictitious:
1. Making you walk like an international rap star after the third drive-by caused permanent nerve damage.***
Big old needle right into hip (or, in fact, into right hip). It's painful while it's happening, but in fact it's worse when you're on the long walk home in jeans which irritate the skin where you've just had the injection.
Option 1: limp like a pro.
Option 2: wear your trousers around your knees.
Put them together and what have you got? A multi-platinum record deal.
2. Exposing the folly of your healthcare providers.
One of the biggest side-effects of lanreotide is that it upsets your stomach and makes you feel nauseous. I had this side effect after every injection last year; after the first one, I felt pretty unwell for several days. Various doctors and nurses warned me about it, saying that lanreotide affects everyone differently, and you simply had to wait it out.
This year, I read on the Pituitary Society's forums that several people who have regular lanreotide injections for acromegaly had been told by their endocrinologists to eat a very low-fat diet for the first few days after the injection, in order to prevent the nausea. So I thought I'd try it, spent the next two days eating vegetable soup and sushi, and hey presto: zero stomach pain and only very very mild nausea a few hours after the injection. If only I had known last year!
3. Itchy Hip Syndrome.
A serious condition, usually associated with insect bites, poison ivy, and low-quality undergarments. I don't know if it's just me or if this happens to everyone, but oh my god my hip is so itchy it's like I survived an attack by a killer mosquito.
At the injection site, not just randomly. That really would be weird.
4. Sudden and complete IT systems collapse.
Almost immediately after I had my injection, the servers at my place of work crashed catastrophically, leaving me unable to log on for about six hours. Coincidence? I THINK NOT.
_____________________________________________________
*You must always read the little white leaflet.
**Of course, I'm exagerrating. Homeopathic treatments do come with side effects, such as inadvertent emptying of both the pockets and the brain.
***And/or with a limp like an old school pimp.
Long story short: yes; yes; no; find out next week in another exciting installment of Pituitary Ademoaner: The Blog!
In any case, the lanreotide has been rushing around my system for a few days. I fondly imagine it coursing through my veins, up to the pituitary gland, and beating my pituitary adenoma around the head, shouting "Stop it! Stop it now! Bad pituitary!" much like a miniature Punch and Judy show without the part about the crocodile and sausages.
I don't have a list of the side effects of Somatuline lanreotide injections, although I seem to remember that they are many and hideous. I'm pretty sure gallstones and feeling sick are the major issues.
But medicines should have side effects; it's only right and proper. I'm pretty sure that if I ever opened a packet of pills, opened up the little leaflet inside* and found that the list of potential side effects included neither coma nor death, I would hardly consider it medication at all. This is just one of the reasons I mistrust homeopathy. If it can't kill you, I refuse to believe it can cure you, either.**
So I present my personal list of the potential side effects of lanreotide injections, which I scarcely need say is not an official list and may in fact be completely fictitious:
Side Effects of Lanreotide:
1. Making you walk like an international rap star after the third drive-by caused permanent nerve damage.***
Big old needle right into hip (or, in fact, into right hip). It's painful while it's happening, but in fact it's worse when you're on the long walk home in jeans which irritate the skin where you've just had the injection.
Option 1: limp like a pro.
Option 2: wear your trousers around your knees.
Put them together and what have you got? A multi-platinum record deal.
2. Exposing the folly of your healthcare providers.
One of the biggest side-effects of lanreotide is that it upsets your stomach and makes you feel nauseous. I had this side effect after every injection last year; after the first one, I felt pretty unwell for several days. Various doctors and nurses warned me about it, saying that lanreotide affects everyone differently, and you simply had to wait it out.
This year, I read on the Pituitary Society's forums that several people who have regular lanreotide injections for acromegaly had been told by their endocrinologists to eat a very low-fat diet for the first few days after the injection, in order to prevent the nausea. So I thought I'd try it, spent the next two days eating vegetable soup and sushi, and hey presto: zero stomach pain and only very very mild nausea a few hours after the injection. If only I had known last year!
3. Itchy Hip Syndrome.
A serious condition, usually associated with insect bites, poison ivy, and low-quality undergarments. I don't know if it's just me or if this happens to everyone, but oh my god my hip is so itchy it's like I survived an attack by a killer mosquito.
At the injection site, not just randomly. That really would be weird.
4. Sudden and complete IT systems collapse.
Almost immediately after I had my injection, the servers at my place of work crashed catastrophically, leaving me unable to log on for about six hours. Coincidence? I THINK NOT.
_____________________________________________________
*You must always read the little white leaflet.
**Of course, I'm exagerrating. Homeopathic treatments do come with side effects, such as inadvertent emptying of both the pockets and the brain.
***And/or with a limp like an old school pimp.
Monday, 23 January 2012
IMFW: Avast, Ye Scurvy Dogs!
Today's Interesting Medical Fact of the Week is about scurvy! Everyone's favourite pirate-borne illness, caused by a lack of vitamin C. Humans and other higher primates share with guinea pigs and bats the dubious distinction of being some of the few animals to suffer from the disease; most other animals can synthesize their own vitamin C, but we don't produce the necessary enzyme. Consequently, although we always think of fruit and vegetables as the only cure for scurvy, in fact simply eating the meat of any animal which produces its own vitamin C can prevent scurvy occurring and will have enough vitamin C to partly treat the illness. Some organs will contain more vitamin C than others; liver and parts of the central nervous system are particularly high in vitamin C. So if you're stuck on a boat in the middle of the ocean, don't fret about finding lemons - just eat a passing seal. If it's vitamin C you need, though, raw is better than cooked. Yum.
Although the benefits of citrus fruits for scurvy had been suggested time and again by various people, it was James Lind who publicly established that scurvy could be treated through eating citrus fruit in 1747, in what has been described as the "world's first clinical trial"... although that might be taking it a bit far. On a voyage, he divided up twelve scurvy sufferers into 6 groups, and treated each group with a different dietary supplement daily. They all received the same diet but in addition, group one were given cider, group two sulfuric acid, group three vinegar, group four half a pint of seawater (poor group four), group five a daily lemon and two oranges, and group six were given barley water and some kind of spicy paste. He ran out of citrus fruit after just six days, but by that time one of the sailors in group five was restored to health and the other had significantly improved; the only other group to show any improvement was group one. He published his results with a general review of the theories behind the disease in 1753 in A Treatise of the Scurvy.
Lind was a bit of a legend; one of his recommendations when still trying to work out what caused scurvy was for the Navy to grow watercress on big wet blankets on-board ship (watercress is very high in vitamin C); a recommedation which was actually taken up in 1775 and Navy ships were provided with seeds.
Scurvy was only really eradicated from the Royal Navy in the 1790s when the suggestions of Lind and others that lemon juice be used on ships was finally taken up by Gilbert Blane, a Scottish doctor who instituted several health reforms in the Navy. The health of sailors improved significantly as a result, making lemons (and later, limes) an important factor in British successes in the Napoleonic wars.
Although the benefits of citrus fruits for scurvy had been suggested time and again by various people, it was James Lind who publicly established that scurvy could be treated through eating citrus fruit in 1747, in what has been described as the "world's first clinical trial"... although that might be taking it a bit far. On a voyage, he divided up twelve scurvy sufferers into 6 groups, and treated each group with a different dietary supplement daily. They all received the same diet but in addition, group one were given cider, group two sulfuric acid, group three vinegar, group four half a pint of seawater (poor group four), group five a daily lemon and two oranges, and group six were given barley water and some kind of spicy paste. He ran out of citrus fruit after just six days, but by that time one of the sailors in group five was restored to health and the other had significantly improved; the only other group to show any improvement was group one. He published his results with a general review of the theories behind the disease in 1753 in A Treatise of the Scurvy.
Lind was a bit of a legend; one of his recommendations when still trying to work out what caused scurvy was for the Navy to grow watercress on big wet blankets on-board ship (watercress is very high in vitamin C); a recommedation which was actually taken up in 1775 and Navy ships were provided with seeds.
Scurvy was only really eradicated from the Royal Navy in the 1790s when the suggestions of Lind and others that lemon juice be used on ships was finally taken up by Gilbert Blane, a Scottish doctor who instituted several health reforms in the Navy. The health of sailors improved significantly as a result, making lemons (and later, limes) an important factor in British successes in the Napoleonic wars.
Sunday, 22 January 2012
One In Five
Research has shown that one in five people harbour a pituitary tumor.
It's not like harbouring a boat, or harbouring a fugitive; the vast majority of people don't even know the tumor is there, and it might never trouble them. This means that if you're part of an average all-American family, if you don't have a pituitary tumor, and your parents don't have a tumor, and your sister doesn't have a tumor - it's probably the dog.*
It also means that those of us who are deeply and continually troubled by pituitary gland problems are unlucky creatures, who should stop their whining already.
__________________________________________________
*This is actually true - dogs suffer from Cushing's disease, most commonly caused by a pituitary adenoma (tumor) producing too much adrenocorticotropic hormone (ACTH), at a relatively high rate. Treatment of Cushing's in dogs is actually being used as research into more effective treatments in humans.
It's not like harbouring a boat, or harbouring a fugitive; the vast majority of people don't even know the tumor is there, and it might never trouble them. This means that if you're part of an average all-American family, if you don't have a pituitary tumor, and your parents don't have a tumor, and your sister doesn't have a tumor - it's probably the dog.*
It also means that those of us who are deeply and continually troubled by pituitary gland problems are unlucky creatures, who should stop their whining already.
__________________________________________________
*This is actually true - dogs suffer from Cushing's disease, most commonly caused by a pituitary adenoma (tumor) producing too much adrenocorticotropic hormone (ACTH), at a relatively high rate. Treatment of Cushing's in dogs is actually being used as research into more effective treatments in humans.
Saturday, 21 January 2012
Women With Acromegaly
After yesterday's post, I wanted to write about women with acromegaly,* as pretty much all of the pituitary adenoma sufferers I've identified so far have been men. In terms of acromegaly, I suppose that great height for a man may be seen as an advantage for certain roles as an actor or sportsman, and the physical symptoms of acromegaly - such as enlargement of the hands and feet, jaw, forehead and so on - are perhaps less likely to cause adverse comment in a man than a woman.
But I admit, I considered subtitling this post "Where The Hell Are You?" Women with acromegaly are seriously hard to find; the Wikipedia entry of "notable cases" of acromegaly lists thirteen sufferers, who are all male. It's true that male celebrities with gigantism are, in most cases, famous for roles which they play because of their height; like many actors with disabilities or conditions such as gigantism or dwarfism, casting directors or scouts are looking at their physical attributes first, and their acting talent second. Yet there is a fair list of men with acromegaly who are famous for their roles in TV or film, or for their sporting achievements - and there are even a few male acromegaly sufferers who are famous for something completely unrelated to their height, such as Kevin Aucoin, make-up artist and the historic Pio Pico, last governor of Mexican California.
Yet the only famous women with acromegaly that I've been able to track down so far are famous for their height alone; they are record holders, they might be interviewed for the newspapers, but they don't get the acting roles that great height opens up for their male counterparts. They're not on television playing unusually tall people; it seems as though such parts are for men only. They're not playing sport. There's no female Andre the Giant or Richard Kiel; and yet, when it comes to actors with dwarfism, there are well-known female actors out there, even if they are in smaller numbers than their male counterparts.
Gigantism caused by acromegaly is an extremely rare disease, don't get me wrong - even rarer than acromegaly which develops in adulthood. But it is just as likely to occur in women as in men - so why is it that some male sufferers are able to exploit their illness in a way in which female sufferers are not? The symptoms of acromegaly, especially that which develops in youth - great height, large jaw, big hands and feet - are debilitating, but they also closely correlate with traditional physical markers of masculinity; and they're diametrically opposed to feminine physical ideals. Do women with acromegaly suffer greater discrimination than men? I'd be interested to find out.
Tanya Angus
Tanya Angus is an activist who raises awareness about acromegaly in the United States. She does a pretty good job of it too; she's been interviewed on the Today Show, featured on ABC News, and even made it across the pond with a story in the Daily Mail. Tanya's acromegaly has proved impossible to control with pituitary surgery or medication, and consequently she's still growing at age 33 and 6'6". After her GP consistently failed to acknowledge that there could be anything wrong, she was diagnosed only by the time that her pituitary tumor had grown to the size of grapefruit. Whilst there was some success in reducing her hormone levels in 2010 using bumper doses of Somatuline, they appear to have been creeping back up again in 2011; and in a country where there's no National Health Service, her medications and hospital treatment are hugely expensive. She speaks about the difficulties that acromegaly brings for female sufferers; she is frequently referred to as "sir" and still receives abuse even in her home town.
See her website at http://www.tanyaangus.com/
Sandy Allen
Sandy Allen was the world's tallest woman before her death at the age of 53 in 2008. Sandy was 7' 7 1/2" - for comparison, currently the world's tallest man is Sultan Kösen at 8'3" - only 8 inches taller. In her later years, Allen was restricted to using a wheelchair to get about; many sufferers of acromegaly gigantism find that as they age, their legs and back are no longer able to support their height and weight. She made appearances on film and television, and aimed to educate children about the importance of accepting differences.
Svetlana Singh
Svetlana Singh is an Indian woman with gigantism caused by acromegaly; she was featured on a Channel Four documentary called The World's Tallest Woman And Me, although at 6'8" she is significantly smaller than the record holders. Married to a man who is 6'6", their child Karan was already 3'2" aged just ten months old. Svetlana was hoping to play netball for India at the Commonwealth Games in 2010, before a knee injury which failed to heal forced her to abandon a possible sporting career.
UPDATE: I've also written about famous people with pituitary adenomas here and here, and written specifically about famous people with Cushing's Disease.
_________________________________________________
*What is acromegaly? It's a growth condition caused by a pituitary adenoma (tumor) which releases too much growth hormone - this site has a good explanation of the condition.
But I admit, I considered subtitling this post "Where The Hell Are You?" Women with acromegaly are seriously hard to find; the Wikipedia entry of "notable cases" of acromegaly lists thirteen sufferers, who are all male. It's true that male celebrities with gigantism are, in most cases, famous for roles which they play because of their height; like many actors with disabilities or conditions such as gigantism or dwarfism, casting directors or scouts are looking at their physical attributes first, and their acting talent second. Yet there is a fair list of men with acromegaly who are famous for their roles in TV or film, or for their sporting achievements - and there are even a few male acromegaly sufferers who are famous for something completely unrelated to their height, such as Kevin Aucoin, make-up artist and the historic Pio Pico, last governor of Mexican California.
Yet the only famous women with acromegaly that I've been able to track down so far are famous for their height alone; they are record holders, they might be interviewed for the newspapers, but they don't get the acting roles that great height opens up for their male counterparts. They're not on television playing unusually tall people; it seems as though such parts are for men only. They're not playing sport. There's no female Andre the Giant or Richard Kiel; and yet, when it comes to actors with dwarfism, there are well-known female actors out there, even if they are in smaller numbers than their male counterparts.
Gigantism caused by acromegaly is an extremely rare disease, don't get me wrong - even rarer than acromegaly which develops in adulthood. But it is just as likely to occur in women as in men - so why is it that some male sufferers are able to exploit their illness in a way in which female sufferers are not? The symptoms of acromegaly, especially that which develops in youth - great height, large jaw, big hands and feet - are debilitating, but they also closely correlate with traditional physical markers of masculinity; and they're diametrically opposed to feminine physical ideals. Do women with acromegaly suffer greater discrimination than men? I'd be interested to find out.
Women With Acromegaly
Tanya Angus
Tanya Angus is an activist who raises awareness about acromegaly in the United States. She does a pretty good job of it too; she's been interviewed on the Today Show, featured on ABC News, and even made it across the pond with a story in the Daily Mail. Tanya's acromegaly has proved impossible to control with pituitary surgery or medication, and consequently she's still growing at age 33 and 6'6". After her GP consistently failed to acknowledge that there could be anything wrong, she was diagnosed only by the time that her pituitary tumor had grown to the size of grapefruit. Whilst there was some success in reducing her hormone levels in 2010 using bumper doses of Somatuline, they appear to have been creeping back up again in 2011; and in a country where there's no National Health Service, her medications and hospital treatment are hugely expensive. She speaks about the difficulties that acromegaly brings for female sufferers; she is frequently referred to as "sir" and still receives abuse even in her home town.
See her website at http://www.tanyaangus.com/
Sandy Allen
Sandy Allen was the world's tallest woman before her death at the age of 53 in 2008. Sandy was 7' 7 1/2" - for comparison, currently the world's tallest man is Sultan Kösen at 8'3" - only 8 inches taller. In her later years, Allen was restricted to using a wheelchair to get about; many sufferers of acromegaly gigantism find that as they age, their legs and back are no longer able to support their height and weight. She made appearances on film and television, and aimed to educate children about the importance of accepting differences.
 |
| Sandy Allen |
Svetlana Singh is an Indian woman with gigantism caused by acromegaly; she was featured on a Channel Four documentary called The World's Tallest Woman And Me, although at 6'8" she is significantly smaller than the record holders. Married to a man who is 6'6", their child Karan was already 3'2" aged just ten months old. Svetlana was hoping to play netball for India at the Commonwealth Games in 2010, before a knee injury which failed to heal forced her to abandon a possible sporting career.
UPDATE: I've also written about famous people with pituitary adenomas here and here, and written specifically about famous people with Cushing's Disease.
_________________________________________________
*What is acromegaly? It's a growth condition caused by a pituitary adenoma (tumor) which releases too much growth hormone - this site has a good explanation of the condition.
Friday, 20 January 2012
More Famous People With Lumps In Their Head.
So it turns out that by far my most popular post on this blog so far is the one entitled "Russell Watson, It's Not All About You". I don't know whether my readers just happen to have enduring personal grievances with Russell Watson, or are simply opera purists who object to his pop-operatic croonings. Or maybe it's something else.
So, I'm faced with a choice. In my relentless pursuit of pageviews, should I begin writing reams of personal abuse about Mr Watson, or simply continue to shine a spotlight on the other pituitary ademoaners of the world?
I choose the latter option, and not just because of Britain's vast and unyielding libel laws.*
And so, I present:
Once again I must apologise for the preponderance of people with acromegaly on this list! Acromegaly is an extremely rare illness, caused by a tumor on the pituitary gland which produces excessive growth hormone. However, acromegaly's symptoms are so visually striking that, especially if the illness occurs in childhood - when it will lead to massive growth in height (gigantism), as well as the growth of soft tissue and bone which occur in adult acromegaly - its sufferers are very visible. So-called "giants" are in demand for certain roles in the film and television industry, as well as certain sports where their height gives them an advantage. Consequently, it's relatively easy to find famous acromegaly sufferers, while celebrities who suffer from other kinds of pituitary adenoma may keep their diagnosis private.
I certainly think that it would be helpful if there were celebrities who were known to have Cushing's, or prolactinoma; it helps sufferers to feel that they're not alone, and emphasizes the fact that, while a pituitary adenoma can be a significant bloody nuisance, it's not the end of the world - and that there are plenty of other people going through the same problems.
Obviously I think it would be awesome if a famous person was known to have a TSH-oma/thyrotropinoma. But if that doesn't happen, well I guess I'll just have to step up to the celebrity line!**
Anyway, back to the point. Presenting:
Carel Struycken
Carel Struycken is an actor and an acromegaly sufferer; he stands seven foot tall. Born in the Netherlands in 1948, he's now 63 years old. You might recognise him from playing Lurch in the Addams Family films (click here for a picture!); he's also appeared in Star Trek: the Next Generation, Men In Black, and even Sargeant Pepper's Lonely Heart's Club Band. According to my trusty Wikipedia, he's interested in photography and the development of virtual reality systems. A pretty cool guy by all standards!
Richard Kiel
Richard Kiel is another well-known actor who suffers from acromegaly; his most famous role was as Jaws in the James Bond films. He's now largely retired, although he voiced a character in the animated film Tangled which came out in 2010, and he's written two books; one a memoir entitled Making It Big In The Movies, the second a historical novel co-authored with Pamela Wallace, about the life of Cassius Marcellus Clay, a 19th-Century abolitionist.
Scott Hamilton
Scott Hamilton, the Olympic gold medallist figure skater, is a craniopharyngioma sufferer. I've not previously mentioned craniopharyngiomas, but like pituitary adenomas they're a rare kind of benign pituitary tumour. They cause similar symptoms to pituitary adenomas; they can interfere with hormone production, although they will cause hormone deficits rather than overproduction of pituitary hormones, and they cause headaches and vision loss. They're most common in children and middle-aged adults; Scott Hamilton was diagnosed with craniopharyngioma aged 51. A remarkable guy, Hamilton won four consecutive World Championships and created Stars On Ice.
UPDATE: For those of you who just can't get enough of hearing about famous people with pituitary tumours, I've also written a post about famous people with Cushing's Disease, a post about famous women with acromegaly, my original post about Russell Watson that sparked this whole thing off, and my first post about famous tumourheads!
__________________________________________________
*Russell Watson, I love you.
**Admittedly, I haven't quite worked out how I'll achieve fame. Through my own line of edible greetings cards? By streaking at the London Olympics? For my charitable work with walruses? Ideas on a postcard please.
So, I'm faced with a choice. In my relentless pursuit of pageviews, should I begin writing reams of personal abuse about Mr Watson, or simply continue to shine a spotlight on the other pituitary ademoaners of the world?
I choose the latter option, and not just because of Britain's vast and unyielding libel laws.*
And so, I present:
A Panoply of Pituitary Problems, or: More Famous People With Lumps In Their Head.
Once again I must apologise for the preponderance of people with acromegaly on this list! Acromegaly is an extremely rare illness, caused by a tumor on the pituitary gland which produces excessive growth hormone. However, acromegaly's symptoms are so visually striking that, especially if the illness occurs in childhood - when it will lead to massive growth in height (gigantism), as well as the growth of soft tissue and bone which occur in adult acromegaly - its sufferers are very visible. So-called "giants" are in demand for certain roles in the film and television industry, as well as certain sports where their height gives them an advantage. Consequently, it's relatively easy to find famous acromegaly sufferers, while celebrities who suffer from other kinds of pituitary adenoma may keep their diagnosis private.
I certainly think that it would be helpful if there were celebrities who were known to have Cushing's, or prolactinoma; it helps sufferers to feel that they're not alone, and emphasizes the fact that, while a pituitary adenoma can be a significant bloody nuisance, it's not the end of the world - and that there are plenty of other people going through the same problems.
Obviously I think it would be awesome if a famous person was known to have a TSH-oma/thyrotropinoma. But if that doesn't happen, well I guess I'll just have to step up to the celebrity line!**
Anyway, back to the point. Presenting:
Carel Struycken
Carel Struycken is an actor and an acromegaly sufferer; he stands seven foot tall. Born in the Netherlands in 1948, he's now 63 years old. You might recognise him from playing Lurch in the Addams Family films (click here for a picture!); he's also appeared in Star Trek: the Next Generation, Men In Black, and even Sargeant Pepper's Lonely Heart's Club Band. According to my trusty Wikipedia, he's interested in photography and the development of virtual reality systems. A pretty cool guy by all standards!
Richard Kiel
Richard Kiel is another well-known actor who suffers from acromegaly; his most famous role was as Jaws in the James Bond films. He's now largely retired, although he voiced a character in the animated film Tangled which came out in 2010, and he's written two books; one a memoir entitled Making It Big In The Movies, the second a historical novel co-authored with Pamela Wallace, about the life of Cassius Marcellus Clay, a 19th-Century abolitionist.
Scott Hamilton
Scott Hamilton, the Olympic gold medallist figure skater, is a craniopharyngioma sufferer. I've not previously mentioned craniopharyngiomas, but like pituitary adenomas they're a rare kind of benign pituitary tumour. They cause similar symptoms to pituitary adenomas; they can interfere with hormone production, although they will cause hormone deficits rather than overproduction of pituitary hormones, and they cause headaches and vision loss. They're most common in children and middle-aged adults; Scott Hamilton was diagnosed with craniopharyngioma aged 51. A remarkable guy, Hamilton won four consecutive World Championships and created Stars On Ice.
 |
| Hamilton's last performance on Stars On Ice |
UPDATE: For those of you who just can't get enough of hearing about famous people with pituitary tumours, I've also written a post about famous people with Cushing's Disease, a post about famous women with acromegaly, my original post about Russell Watson that sparked this whole thing off, and my first post about famous tumourheads!
__________________________________________________
*Russell Watson, I love you.
**Admittedly, I haven't quite worked out how I'll achieve fame. Through my own line of edible greetings cards? By streaking at the London Olympics? For my charitable work with walruses? Ideas on a postcard please.
Thursday, 19 January 2012
Making The Drop
My Somatuline injection has been collected from the pharmacy (eventually; the poor pharmacist couldn't work out where it was for ages, because of course I forgot to mention that it would be in the fridge) and dropped off at the GP's surgery.
I have a great and enduring respect for medical receptionists, not least because two of my closest friends have worked as medical receptionists for some years, and there's no-one I'd rather have access to my private medical records. Nonetheless, every now and again one of the receptionists at my local GP's does cause me a certain amount of difficulty, which, I must emphasize, is no doubt due to her innate personality traits and not to her profession.
Disclaimer aside, the short story is that, despite my protestations that there was only one nurse at the GP's surgery who was trained to give me the injections and that therefore I should have the appointment with her, the receptionist booked me in to have the injection with another nurse because the first nurse was "away all week", insisting it would be fine because all the nurses are medically trained.* Against my better judgement, and despite saying that I would be happy to wait for the first nurse to return, I eventually gave in, knowing that if worst came to the worse, there are instructions inside the packet.
Fast forward to yesterday,when I went to drop off the lanreotide syringe at the GP's surgery; the first nurse happened to be in the reception when I arrived. On hearing that I was to have the injection with another nurse, she said she would have to explain the injection to her but more significantly was confused as to why I hadn't booked to have the injection with her in the first place seeing as she was only away for two days.
I was going to write up the long story, but I'm afraid it was even more boring.
In any case, the point is that next week my pituitary adenoma will receive a sudden shock when I have my first lanreotide injection, and I'm hoping that the symptoms caused by my pituitary tumor will finally subside. Here's hoping!
_________________________________________________________
*Of corse, this was news to me. I thought they were just people with a needle fetish who wandered in off the street.
I have a great and enduring respect for medical receptionists, not least because two of my closest friends have worked as medical receptionists for some years, and there's no-one I'd rather have access to my private medical records. Nonetheless, every now and again one of the receptionists at my local GP's does cause me a certain amount of difficulty, which, I must emphasize, is no doubt due to her innate personality traits and not to her profession.
Disclaimer aside, the short story is that, despite my protestations that there was only one nurse at the GP's surgery who was trained to give me the injections and that therefore I should have the appointment with her, the receptionist booked me in to have the injection with another nurse because the first nurse was "away all week", insisting it would be fine because all the nurses are medically trained.* Against my better judgement, and despite saying that I would be happy to wait for the first nurse to return, I eventually gave in, knowing that if worst came to the worse, there are instructions inside the packet.
Fast forward to yesterday,when I went to drop off the lanreotide syringe at the GP's surgery; the first nurse happened to be in the reception when I arrived. On hearing that I was to have the injection with another nurse, she said she would have to explain the injection to her but more significantly was confused as to why I hadn't booked to have the injection with her in the first place seeing as she was only away for two days.
I was going to write up the long story, but I'm afraid it was even more boring.
In any case, the point is that next week my pituitary adenoma will receive a sudden shock when I have my first lanreotide injection, and I'm hoping that the symptoms caused by my pituitary tumor will finally subside. Here's hoping!
_________________________________________________________
*Of corse, this was news to me. I thought they were just people with a needle fetish who wandered in off the street.
Monday, 16 January 2012
IMFW: Love Your Liver
Today I was sad to read about this 26 year old man who is in need of a liver transplant after developing liver cirrhosis due to alcoholism aged just 21.*
The liver is a pretty magic organ, really; it has to take quite a major pummelling before you can damage it permanently, which is why it's all the more tragic and unusual for someone so young to have had such severe alcoholism as to cause liver failure.
So I thought I'd focus on the liver for my Interesting Medical Fact of the Week. Much like The Doctor, its regenerative capabilities are immense; it can regenerate itself after damage by alcohol consumption, drugs or surgery even if only 25% of its tissue is left healthy, and as such is the only internal organ capable of natural regeneration of lost tissue.
The reason that chronic liver disease is incurable (other than by transplant) once it has reached the stage of cirrhosis is that it affects the liver in a systemic way, affecting tissue equally throughout the organ rather than leaving areas of healthy tissue capable of regeneration.
So love your liver!
______________________________________________________
*For those of you non-hepatophiles, cirrhosis is the last stage of chronic liver disease;** it is irreversible and deeply unpleasant. You know I always try to link back to the pituitary in an almost-obsessive manner, and so I can tell you that cirrhosis can also lead to hypogonadism due to suppressed hypothalamic or pituitary function. Treatment focuses on preventing progression. In the West, alcoholism and Hepatitis C are the main causes, and in 2001 cirrhosis/chronic liver disease were the 10th leading cause of death for men in the US, and the 12th for women. Interestingly, it was named by Rene Laennec, the French doctor who invented the stethoscope in 1816.
**Other than death, I guess.
The liver is a pretty magic organ, really; it has to take quite a major pummelling before you can damage it permanently, which is why it's all the more tragic and unusual for someone so young to have had such severe alcoholism as to cause liver failure.
So I thought I'd focus on the liver for my Interesting Medical Fact of the Week. Much like The Doctor, its regenerative capabilities are immense; it can regenerate itself after damage by alcohol consumption, drugs or surgery even if only 25% of its tissue is left healthy, and as such is the only internal organ capable of natural regeneration of lost tissue.
The reason that chronic liver disease is incurable (other than by transplant) once it has reached the stage of cirrhosis is that it affects the liver in a systemic way, affecting tissue equally throughout the organ rather than leaving areas of healthy tissue capable of regeneration.
So love your liver!
______________________________________________________
*For those of you non-hepatophiles, cirrhosis is the last stage of chronic liver disease;** it is irreversible and deeply unpleasant. You know I always try to link back to the pituitary in an almost-obsessive manner, and so I can tell you that cirrhosis can also lead to hypogonadism due to suppressed hypothalamic or pituitary function. Treatment focuses on preventing progression. In the West, alcoholism and Hepatitis C are the main causes, and in 2001 cirrhosis/chronic liver disease were the 10th leading cause of death for men in the US, and the 12th for women. Interestingly, it was named by Rene Laennec, the French doctor who invented the stethoscope in 1816.
**Other than death, I guess.
Friday, 13 January 2012
Lies and Calumny
I am ashamed to say that, after my previous rant about the lengthy process I will have to undertake each month before getting my lanreotide injections, the pharmacy has wildly surpassed my expectations (and, to be fair, my previous experiences) at Step 4 of the spotter's guide to Somatuline injections, and got the syringe delivered one single day after I ordered it. That is pretty impressive! So I felt I should set the record straight.
Sadly, I will not be taking advantage of this to have my first injection early, as I'm already booked in to have it on Monday the 23rd; I've arranged to work from home for that day and the next so if I get horribly nauseous like last time I can continually munch on ginger biscuits. Plus, I'm going to a formal dinner on the 21st, it was expensive, they are serving DUCK (my favourite), and I have no intention of wasting good money and better food by feeling ill throughout! Hurrah!
Sadly, I will not be taking advantage of this to have my first injection early, as I'm already booked in to have it on Monday the 23rd; I've arranged to work from home for that day and the next so if I get horribly nauseous like last time I can continually munch on ginger biscuits. Plus, I'm going to a formal dinner on the 21st, it was expensive, they are serving DUCK (my favourite), and I have no intention of wasting good money and better food by feeling ill throughout! Hurrah!
Thursday, 12 January 2012
A Weighty Matter
Traditionally there are two things you're not supposed to ask a woman: her age and her weight. This fact has led me to conclude that the staff at my local hospital are ill-mannered oiks, because every time I visit they demand to know my date of birth and promptly stick me on some giant hospital scales (I once had a go in a hospital weighing chair. It's just like a normal chair… except that when you sit in it, it weighs you. Surprise!). I am led to understand that they do this to everyone at the pituitary clinic, presumably because so many pituitary problems can affect your weight. Cushing's disease can lead to significant weight gain; acromegaly can as well, and thyroid hormone disturbances can have disturbing consequences for the waistline.
Before beginning treatment with lanreotide last January, I had presumably been hyperthyroid (ie. had too much thyroid hormone) for at least a year, given my symptoms. Hyperthyroidism is "supposed" to lead to weight loss, by affecting the metabolism; hypothyroidism (having too little thyroid hormone) leads to weight gain. In my case, though, this didn't hold true; I'd been hyperthyroid for a long time without weight loss, and in fact it was when treatment began to reduce my thyroid hormone levels that I started to lose weight, because I found that it reduced my appetite from "extremely peckish" to "normal person". It had never occurred to me previously that my appetite was unusually high* - but as it turns out, the hyperthyroidism caused by my pituitary adenoma was giving me an appetite which more than matched my raised metabolism. When I did begin to lose weight, the lanreotide injections may also have nudged things along, because they effectively turn off your gall bladder for a few days after each injection - the gall bladder stores bile, which aids in the digestion of dietary fats, so the lanreotide leaves the body less able to digest fats for a few days each month. Effectively it's an imbalance of the humors.
But anyway, the short story is that I've lost just about a stone over the last year, pretty slowly but steadily. A stone might not sound much compared to the stories of vast weightloss that WeightWatchers et al may peddle you, but it's over 10% of my bodyweight. That's quite a bit.
The pros of losing weight:
1. Being thinner!
2. More piggyback rides may be demanded from boyfriend
3. Getting to buy a bunch of new clothes
The cons of losing weight:
1. Having to spend a load of money on a bunch of new clothes
2. It worries my mother
3. Newfound paranoia about getting really chubby
Previously, I had never really worried about putting on gallons of weight,** but unfortunately the whole experience has underlined for me the fact that, if I can suddenly lose so much weight without trying, I could just as easily gain it, should my hormones decide they want to screw me over in a whole new way. That is a scary thought. Everyone always tells you that as long as you eat right and exercise you've nothing to worry about, and the cruel common wisdom is that everyone who's fat brought it upon themselves - but the fact is that's not always true; as I mentioned earlier, the symptoms of pituitary tumours often involve weight gain. People with Cushing's disease can eat incredibly strict rations and still put on a lot of weight; over the last year, I've experienced for myself how much even relatively small changes in thyroid hormone levels affect appetite, as well as weight and metabolism. Even right at the beginning of my lanreotide treatment, when my thyroid levels had only dropped slightly, my appetite suddenly crashed back to earth, and throughout the year it has noticeably fluctuated from month to month.
I'm really lucky that my weight change has, so far (and fingers crossed) been in an ok direction, but I can't help but worry that, should I need more treatment in the future, that might change; surgery and radiotherapy both have the potential to knock out my body's ability to produce various pituitary hormones and leave me hypothyroid rather than hyperthyroid
I now have a nightmare where I have to use the extra-large doors they have installed in the hospital for obesity clinic patients. I'm hoping that will only happen if 80's style shoulder-pads come back into vogue.
God forbid.
______________________________________________________________
*Well ok, it had, but I thought I was just extremely greedy.
**Well ok, I had, but only after watching the BBC's classic (and unspeakably horrific) programme Super Size Ambulance.
Before beginning treatment with lanreotide last January, I had presumably been hyperthyroid (ie. had too much thyroid hormone) for at least a year, given my symptoms. Hyperthyroidism is "supposed" to lead to weight loss, by affecting the metabolism; hypothyroidism (having too little thyroid hormone) leads to weight gain. In my case, though, this didn't hold true; I'd been hyperthyroid for a long time without weight loss, and in fact it was when treatment began to reduce my thyroid hormone levels that I started to lose weight, because I found that it reduced my appetite from "extremely peckish" to "normal person". It had never occurred to me previously that my appetite was unusually high* - but as it turns out, the hyperthyroidism caused by my pituitary adenoma was giving me an appetite which more than matched my raised metabolism. When I did begin to lose weight, the lanreotide injections may also have nudged things along, because they effectively turn off your gall bladder for a few days after each injection - the gall bladder stores bile, which aids in the digestion of dietary fats, so the lanreotide leaves the body less able to digest fats for a few days each month. Effectively it's an imbalance of the humors.
But anyway, the short story is that I've lost just about a stone over the last year, pretty slowly but steadily. A stone might not sound much compared to the stories of vast weightloss that WeightWatchers et al may peddle you, but it's over 10% of my bodyweight. That's quite a bit.
The pros of losing weight:
1. Being thinner!
2. More piggyback rides may be demanded from boyfriend
3. Getting to buy a bunch of new clothes
The cons of losing weight:
1. Having to spend a load of money on a bunch of new clothes
2. It worries my mother
3. Newfound paranoia about getting really chubby
Previously, I had never really worried about putting on gallons of weight,** but unfortunately the whole experience has underlined for me the fact that, if I can suddenly lose so much weight without trying, I could just as easily gain it, should my hormones decide they want to screw me over in a whole new way. That is a scary thought. Everyone always tells you that as long as you eat right and exercise you've nothing to worry about, and the cruel common wisdom is that everyone who's fat brought it upon themselves - but the fact is that's not always true; as I mentioned earlier, the symptoms of pituitary tumours often involve weight gain. People with Cushing's disease can eat incredibly strict rations and still put on a lot of weight; over the last year, I've experienced for myself how much even relatively small changes in thyroid hormone levels affect appetite, as well as weight and metabolism. Even right at the beginning of my lanreotide treatment, when my thyroid levels had only dropped slightly, my appetite suddenly crashed back to earth, and throughout the year it has noticeably fluctuated from month to month.
I'm really lucky that my weight change has, so far (and fingers crossed) been in an ok direction, but I can't help but worry that, should I need more treatment in the future, that might change; surgery and radiotherapy both have the potential to knock out my body's ability to produce various pituitary hormones and leave me hypothyroid rather than hyperthyroid
I now have a nightmare where I have to use the extra-large doors they have installed in the hospital for obesity clinic patients. I'm hoping that will only happen if 80's style shoulder-pads come back into vogue.
God forbid.
______________________________________________________________
*Well ok, it had, but I thought I was just extremely greedy.
**Well ok, I had, but only after watching the BBC's classic (and unspeakably horrific) programme Super Size Ambulance.
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 >.>
Monday, 9 January 2012
IMFW: Shave and a Haircut, No Legs
Todays edition of the Interesting Medical Fact of the Week concerns medieval barber surgeons. Back in the day, surgeons were not medical practitioners... but hairdressers. In 1540 the Guild of Surgeons incorporated with the Worshipful Company of Barbers* to form the Company of Barber Surgeons, and they remained as one entity until 1745 when the surgeons broke away again. The degree to which barbers and surgeons were separated varied across Europe as well as through time; in France there were moves as early as 1210 to distinguish academically trained surgeons from the barber surgeons, and throughout the Middle Ages universities such as Montpellier, Padua and Bologna provided formal education for surgeons that was entirely distinct from the remit of a barber surgeon.
The heyday of barber surgeons came once the clergy were banned from performing bloodletting in 1163 at the Council of Tours and barbers stepped in to fill the gap; they already had the tools, after all. Barber surgeons variously practiced bloodletting, dentistry, enemas, and of course shaving and haircutting - carrying out actual surgery mainly on the battlefield. Their informal training was usually by apprenticeship and many were illiterate. Legend has it that the traditional red-and-white striped pole of barbers represents the blood and bandages of their surgical trade.
_________________________________________________
*Incidentally, I feel this would be a great name for a band.
The heyday of barber surgeons came once the clergy were banned from performing bloodletting in 1163 at the Council of Tours and barbers stepped in to fill the gap; they already had the tools, after all. Barber surgeons variously practiced bloodletting, dentistry, enemas, and of course shaving and haircutting - carrying out actual surgery mainly on the battlefield. Their informal training was usually by apprenticeship and many were illiterate. Legend has it that the traditional red-and-white striped pole of barbers represents the blood and bandages of their surgical trade.
_________________________________________________
*Incidentally, I feel this would be a great name for a band.
Thursday, 5 January 2012
The Future's Orange...
...and not just because I've applied the wrong shade of fake tan.*
Yesterday, while working hard at work/deleting all the pointless emails I got over Christmas/eating the leftover Christmas chocolates brought in by a coworker, I received a phone call from the hospital.
This happens about once a month, and I have developed a clear routine on such ocassions, as follows:
1. Almost choke on my cup of tea in surprise
i. Search for somewhere to put my mug amongst all the paperwork on my desk***
2. Scrabble frantically through my handbag to find my phone, whilst cursing either:
i. my annoyingly raucous ringtone
OR
ii. the piles of crap and receipts filling my bag and obstructing my progress.
3. Sprint out of the room into the corridor whilst both:
i. answering the phone
AND
ii. apologising to my coworkers for disrupting them
4. My endocrinologist says: "Hiya, is now an ok time to talk?"
and
5. I LIE THROUGH MY TEETH and respond "Yes, now is fine, no problem."
Anyhow, the phone duly answered, my endocrinologist informed me that he was calling because, having consulted with his colleagues about me, they have decided that I should start having injections of somatostatin analogue this month - specifically lanreotide (brand name, Somatuline Autogel). They will be at a lower dose than the injections I had previously (I was on 90mg, now I will be on 60mg), which hopefully means fewer side effects. I wasn't too badly affected last time, just had some stomach cramps and nausea for a couple days after each injection - but lanreotide's side effects can be pretty nasty, and I saw on the Pituitary Foundation's forums that some people on these injections have to go on a fat-free diet for the first week after each dose. I am hoping this will not happen, although perhaps I'm more likely to get side effects this time as my thyroid hormones are only slightly above normal, whereas previously they were decidedly eccentric. Interestingly, my endocrinologist mentioned that there's another somatostatin analogue formulation which tends to give people fewer side effects, so if I react badly to it there's the option of switching.
Of course, it all sounds so simple on the phone. "I will call your doctor," my endocrinologist said merrily, "then you can go for blood tests next week and have the injection."
Easy, I hear you cry!
WRONG
These injections are great because they fix me, but they sure are a hassle. Just as with answering my phone, there is an excessively complex procedure to follow before they can begin:
1. I go to my local GP's to get the initial prescription.
2. My doctor looks at me darkly and writes out the lanreotide prescription, muttering "oh my god, it's so expensive... so expensive..." and weeping gently into his rather ugly tie.
3. I take the prescription to the pharmacy and hand it over to the pharmacist, saying "I imagine you'll have to order this one in."
i. The pharmacist gives me a patronising smile and says "No, no, I'll see if we have it in stock first".
ii. The pharmacist looks at the prescription.
iii. The pharacist's brow wrinkles deeply.
iv. The pharmacist orders it in, saying "it'll probably be here in a week. I'll give you a call when we have it."
4. A week and a half later, the pharmacy calls.
5. I go to collect the lanreotide from the pharmacy (it comes in a pre-filled syringe, which I guess is handy).
6. I take the injection straight to the GP's, because it has to be kept refrigerated
i. I explain twice to the receptionist why I'm trying to give it to her
ii. Eventually, she accepts it and puts it in the practice fridge
iii. The receptionist then stops me as I'm walking out of the door, crying, "Have you written your name on it?"
iv. I point to the giant pharmacy sticker on the front of the box, listing my name, age, gender, address, GP's name, GP's address, bank details, sexual preferences and preferred pizza toppings
7. I am finally able to book myself an appointment to actually have the injection
8. Several days later, I return to have the injection, and several blood tests beforehand
i. It is a GIANT needle, I mean literally, even the nurses comment on how giant it is
ii. The nurse has forgotten to leave it out of the fridge to warm it up a bit, and consequently it's like having a stinging-nettle frappe injected into your hip
9. I go home and feel ill for two days
10. REPEAT PROCESS
I realise this is the most whiney post ever about a treatment which hopefully should leave me feeling much better.**** In actual fact, I am genuinely quite looking forward to going on lanreotide again; hopefully it might finally stop my hair falling out, sort out my heartrate and generally leave me feeling both pinky and perky. I just wish the process of getting hold of it didn't involve three trips to the doctors and two to the pharmacy each month.
Interestingly, Wikipedia tells me that in the US, lanreotide is only indicated for the treatment of acromegaly; it seems to imply that it is only used against thyrotropic adenomas/TSHomas in the UK, although I don't know whether that's actually true; it's obviously a logical treatment choice, as somatostatins inhibit the production of thyroid stimulating hormone as well as growth hormone. As well as pituitary adenomas, lanreotide is also used to treat symptoms of neuroendocrine tumours; the kind of tumour that Steve Jobs suffered from.
____________________________________________________
*Incidentally, I don't use fake tan. I am pale and interesting.**
**Well. One out of two isn't bad.
*** I have NO IDEA what most of the paperwork on my desk is. I inherited it from my predecessor and it was never explained to me. Consequently, I don't know if it's too important to throw away.
****Fun fact: when first typing this sentence something broke in my brain and it read "...an injection which should leave me stealing much better". Because at the moment, I am a rubbish pickpocket.
Yesterday, while working hard at work/deleting all the pointless emails I got over Christmas/eating the leftover Christmas chocolates brought in by a coworker, I received a phone call from the hospital.
This happens about once a month, and I have developed a clear routine on such ocassions, as follows:
1. Almost choke on my cup of tea in surprise
i. Search for somewhere to put my mug amongst all the paperwork on my desk***
2. Scrabble frantically through my handbag to find my phone, whilst cursing either:
i. my annoyingly raucous ringtone
OR
ii. the piles of crap and receipts filling my bag and obstructing my progress.
3. Sprint out of the room into the corridor whilst both:
i. answering the phone
AND
ii. apologising to my coworkers for disrupting them
4. My endocrinologist says: "Hiya, is now an ok time to talk?"
and
5. I LIE THROUGH MY TEETH and respond "Yes, now is fine, no problem."
Anyhow, the phone duly answered, my endocrinologist informed me that he was calling because, having consulted with his colleagues about me, they have decided that I should start having injections of somatostatin analogue this month - specifically lanreotide (brand name, Somatuline Autogel). They will be at a lower dose than the injections I had previously (I was on 90mg, now I will be on 60mg), which hopefully means fewer side effects. I wasn't too badly affected last time, just had some stomach cramps and nausea for a couple days after each injection - but lanreotide's side effects can be pretty nasty, and I saw on the Pituitary Foundation's forums that some people on these injections have to go on a fat-free diet for the first week after each dose. I am hoping this will not happen, although perhaps I'm more likely to get side effects this time as my thyroid hormones are only slightly above normal, whereas previously they were decidedly eccentric. Interestingly, my endocrinologist mentioned that there's another somatostatin analogue formulation which tends to give people fewer side effects, so if I react badly to it there's the option of switching.
Of course, it all sounds so simple on the phone. "I will call your doctor," my endocrinologist said merrily, "then you can go for blood tests next week and have the injection."
Easy, I hear you cry!
WRONG
These injections are great because they fix me, but they sure are a hassle. Just as with answering my phone, there is an excessively complex procedure to follow before they can begin:
A Spotter's Guide to Somatuline Autogel Injections:
1. I go to my local GP's to get the initial prescription.
2. My doctor looks at me darkly and writes out the lanreotide prescription, muttering "oh my god, it's so expensive... so expensive..." and weeping gently into his rather ugly tie.
3. I take the prescription to the pharmacy and hand it over to the pharmacist, saying "I imagine you'll have to order this one in."
i. The pharmacist gives me a patronising smile and says "No, no, I'll see if we have it in stock first".
ii. The pharmacist looks at the prescription.
iii. The pharacist's brow wrinkles deeply.
iv. The pharmacist orders it in, saying "it'll probably be here in a week. I'll give you a call when we have it."
4. A week and a half later, the pharmacy calls.
5. I go to collect the lanreotide from the pharmacy (it comes in a pre-filled syringe, which I guess is handy).
6. I take the injection straight to the GP's, because it has to be kept refrigerated
i. I explain twice to the receptionist why I'm trying to give it to her
ii. Eventually, she accepts it and puts it in the practice fridge
iii. The receptionist then stops me as I'm walking out of the door, crying, "Have you written your name on it?"
iv. I point to the giant pharmacy sticker on the front of the box, listing my name, age, gender, address, GP's name, GP's address, bank details, sexual preferences and preferred pizza toppings
7. I am finally able to book myself an appointment to actually have the injection
8. Several days later, I return to have the injection, and several blood tests beforehand
i. It is a GIANT needle, I mean literally, even the nurses comment on how giant it is
ii. The nurse has forgotten to leave it out of the fridge to warm it up a bit, and consequently it's like having a stinging-nettle frappe injected into your hip
9. I go home and feel ill for two days
10. REPEAT PROCESS
I realise this is the most whiney post ever about a treatment which hopefully should leave me feeling much better.**** In actual fact, I am genuinely quite looking forward to going on lanreotide again; hopefully it might finally stop my hair falling out, sort out my heartrate and generally leave me feeling both pinky and perky. I just wish the process of getting hold of it didn't involve three trips to the doctors and two to the pharmacy each month.
Interestingly, Wikipedia tells me that in the US, lanreotide is only indicated for the treatment of acromegaly; it seems to imply that it is only used against thyrotropic adenomas/TSHomas in the UK, although I don't know whether that's actually true; it's obviously a logical treatment choice, as somatostatins inhibit the production of thyroid stimulating hormone as well as growth hormone. As well as pituitary adenomas, lanreotide is also used to treat symptoms of neuroendocrine tumours; the kind of tumour that Steve Jobs suffered from.
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*Incidentally, I don't use fake tan. I am pale and interesting.**
**Well. One out of two isn't bad.
*** I have NO IDEA what most of the paperwork on my desk is. I inherited it from my predecessor and it was never explained to me. Consequently, I don't know if it's too important to throw away.
****Fun fact: when first typing this sentence something broke in my brain and it read "...an injection which should leave me stealing much better". Because at the moment, I am a rubbish pickpocket.
Monday, 2 January 2012
IMFW: Moral Dilemma
The first Interesting Medical Fact of the Week for 2012 - the first interesting fact for a whole new year - concerns something (or rather, someone) that I've written about before. Highly relevant to the pituitary adenoma theme of this blog, in fact.
In my last post, I mentioned Charles Byrne, the Irish Giant, as he was known in his lifetime, a man who suffered from acromegaly in the 1780s. He was briefly a popular attraction in London before succumbing to alcoholism and dying very young at the age of 22. Although he is probably the most well known, as his skeleton is part of the collection in the Hunterian Museum, there were several well-known Irish giants, all of whom likely suffered from acromegaly, who exhibited themself across Europe at the time.
Byrne's skeleton was preserved against his will; the story goes that he was so keen to avoid his body falling into the clutches of John Hunter, a noted surgeon of the time, that his will requested his friends bury his body at sea in a lead coffin. Hunter managed to get his hands on the body, however, allegedly through bribery.
It's curious how many websites I've found when googling the name "Charles Byrne" which not only fail to mention acromegaly, but fail to mention that Byrne had an illness at all - as though growing to 7'7" is a kind of character flaw which could happen to anybody. His skeleton is still on display to the public at the Hunterian Museum, and around a year ago there was some publicity around some genetic research that has been taking place, looking at a genetic cause for pituitary tumours which recur in families, which identified some modern-day acromegaly patients who may be related to Byrne.
More on that research another day.
Today, the news is that there have been calls for Charles Byrne's skeleton to be removed from display, and buried in accordance with his original wishes. It seems fairly unlikely that this will happen, he's a significant feature of the museum; but it's an interesting debate, and on the whole, I have to say that I would broadly be in favour of allowing him to be buried. It's interesting that the moral debate is still going on, more than two hundred years after his death.
In my last post, I mentioned Charles Byrne, the Irish Giant, as he was known in his lifetime, a man who suffered from acromegaly in the 1780s. He was briefly a popular attraction in London before succumbing to alcoholism and dying very young at the age of 22. Although he is probably the most well known, as his skeleton is part of the collection in the Hunterian Museum, there were several well-known Irish giants, all of whom likely suffered from acromegaly, who exhibited themself across Europe at the time.
Byrne's skeleton was preserved against his will; the story goes that he was so keen to avoid his body falling into the clutches of John Hunter, a noted surgeon of the time, that his will requested his friends bury his body at sea in a lead coffin. Hunter managed to get his hands on the body, however, allegedly through bribery.
It's curious how many websites I've found when googling the name "Charles Byrne" which not only fail to mention acromegaly, but fail to mention that Byrne had an illness at all - as though growing to 7'7" is a kind of character flaw which could happen to anybody. His skeleton is still on display to the public at the Hunterian Museum, and around a year ago there was some publicity around some genetic research that has been taking place, looking at a genetic cause for pituitary tumours which recur in families, which identified some modern-day acromegaly patients who may be related to Byrne.
More on that research another day.
Today, the news is that there have been calls for Charles Byrne's skeleton to be removed from display, and buried in accordance with his original wishes. It seems fairly unlikely that this will happen, he's a significant feature of the museum; but it's an interesting debate, and on the whole, I have to say that I would broadly be in favour of allowing him to be buried. It's interesting that the moral debate is still going on, more than two hundred years after his death.
Sunday, 1 January 2012
And Another Thing
Obviously it would be sad for my postings on the first day of a new year* to be entirely negative, so I thought I could, you know, wish you health, wealth and happiness for 2012. Or something.
At a New Year's Eve party last night, I was given a Chinese fortune cookie, and the fortune inside read: "You will receive good news at your next medical". I live in hope!
Also, here is a New Year's Possum to get your 2012 off to a good start. Yay possums!
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*And possibly THE LAST YEAR EVER, thanks to those damn Mayans
At a New Year's Eve party last night, I was given a Chinese fortune cookie, and the fortune inside read: "You will receive good news at your next medical". I live in hope!
Also, here is a New Year's Possum to get your 2012 off to a good start. Yay possums!
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*And possibly THE LAST YEAR EVER, thanks to those damn Mayans
N.B. Commoners Get Sick Too
BBC News (and several other agencies) are reporting that Prince Philip, who spent Christmas in hospital after having emergency heart surgery, got a round of applause from passers-by when he walked to church for a New Year's Day service.
When I rejoined my public life after brain surgery, on my first trip to the supermarket a middle aged woman rammed me repeatedly with her shopping trolley because I was "walking too slowly".
Bet you a pound the old hag would have been first to applaud the Duke of Edinburgh on his brave recovery from adversity...
When I rejoined my public life after brain surgery, on my first trip to the supermarket a middle aged woman rammed me repeatedly with her shopping trolley because I was "walking too slowly".
Bet you a pound the old hag would have been first to applaud the Duke of Edinburgh on his brave recovery from adversity...
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