health · pituitary · top tips

Top Tips For Having Transsphenoidal Pituitary Surgery

Now, I fully recognise that this is a bit of a niche blog post, one which is principally going to be of interest to anyone about to have pituitary surgery. But hey! Pituitary tumors are actually surprisingly common, so there’s a lot of people out there who might be awaiting surgery. Maybe one of them is your, dear reader.

And before going into hospital for your transsphenoidal pituitary surgery, you will be anxious. You will have questions. However, I should note that many of your questions will already have been answered on legitimate medical sites elsewhere on the internet. So instead of regurgitating the same old advice (“Don’t sneeze after surgery or your brain will shoot out of your nose”, “Warning: after they’ve drilled through your head, it may be a little sore”), I have decided I will go down a different route, and write down the more obscure things that I wish I’d known before heading into hospital for transsphenoidal pituitary surgery…

Top Tips For Having Pituitary Surgery

Let me present my top tips for people about to have pituitary surgery:

1. Shave your inside elbows.

“She’s gone mad,” I hear you cry. “She’s raving. It was probably the brain surgery that did it.” In fact, this is an entirely logical step, because of all the blood tests you’ll undergo after your pituitary surgery; you’re basically going to be a human pincushion for a couple of days as the doctors seek to keep a very close watch on various hormone levels. And I mean VERY ClOSE. Both times I’ve had pituitary surgery, I’ve had blood tests every two hours for the first twelve hours after waking up, and then they gradually reduce in frequency… But not fast enough. You will literally be woken up through the night for blood tests in hospital.

This means that the post-blood-test strip of tape and cotton wool that the phlebotomist sticks over your inside elbow is going to get ripped off repeatedly, and then stuck back on. And then ripped off again, along with much of your arm hair. After the sixth time this happens in one day, you’ll be wishing you had taken my advice and shaved your inside elbows. I did this for my second surgery (having learned this lesson the hard way after my first pituitary surgery) and it made all those bloody blood tests just a little bit easier.

2. Drink enough.

If this seems obvious to you, then presumably you’re a normal person who gets thirsty when you haven’t drunk sufficient amounts of water to keep yourself hydrated. However, I am an odd sort of person and I only really notice I’m thirsty when it’s hot or I’ve done exercise (or, for some reason, when I’m pregnant!). Otherwise, I can go for hours and hours without drinking and not even notice; even back when I was a teeny child, my mum would tell me off for not drinking enough.

This was slightly problematic in hospital. Because of the risk of surgery damaging your pituitary gland and causing a condition called diabetes insipidus, your fluid balance is monitored carefully. If they believe you’re becoming dehydrated, they will put you on a drip. This is rubbish. Therefore, drink lots of water. And if you don’t like water, keep a supply of tastier drinks at hand. And by “tastier drinks”, I mean Ribena.

3. Always eat the custard first.

Hospital food gets a bad rep. The food at my hospital was pretty tasty really, and there was a good selection. But for some obscure reason, the dessert was often served before the main. If you waited for your main meal to rock up before eating dessert (like any normal person would), your custard would congeal disconcertingly by the time you got to it.
So remember: you’ve just had brain surgery. Screw societal norms regarding the “correct” order in which to eat sweet or savory comestibles. Don’t let that custard go to waste!

4. Make your visitors play musical chairs.

Again, this may initially seem nonsensical. But I was fortunate enough to have a fair few visitors in hospital after each pituitary surgery (thank you guys!), which was lovely. However, for the most part they sat in the same chair on the left-hand side of my bed. Consequently, by the end of my stay in hospital I had done my neck in, from continually turning my head to the left. It was pretty painful and entirely my own fault. Make them alternate sides. I did for my second surgery and it was much easier on the neck.

5. Get wheeled out in a wheelchair.

Because a) you’ll be feeling rubbish and won’t want to walk, and b) it’s fun!

6. Steroids + morphine = surprisingly fun.

After waking up from my first surgery, initially I felt rubbish. It was very, very painful. Fortunately, the nurse at hand quickly gave me some morphine. By the time I was properly awake, I was pain-free, wired, and weirdly delighted that the nurse had the same first name as my mum. They took me out of the post-surgical care room and up to the main neurosurgical ward, and about half an hour after I woke up I was already texting various members of my friends and family and talking nineteen to the dozen about how unusually chirpy I felt.

7. Play your “brain surgery” card.

I regret not doing this more, in retrospect. When you’ve had brain surgery, you should be able to really milk that fact for all it’s worth. I have no doubt that there are hours of fun to be had in pretending not to recognise household objects, friends, family, political systems and/or branches of philosophy.

I remember speaking to one friend a few weeks after my first brain surgery, and I mentioned that I was always forgetting where I’d left my books. She gave me a sorrowful look and whispered, “Is that because of the surgery?”It was disappointing to have to confess to her that no, I have in fact always been that stupid.

8. Get a free pill slicer. They are awesome.

After pituitary surgery, you’ll be put on steroid replacement medication in case the neurosurgeon accidentally removed your body’s ability to make its own steroid hormone when required. Said pills can be broken into different-sized chunks so you can take, for example, a whole dose in the morning, half a pill at lunch, and the other half in the early afternoon. When I left hospital, I obviously looked too pathetic even to break a tiny pill in two, because they provided me with a pill slicer. You put the pill in, shut the lid, and SHAZAM! A razorblade hidden inside will slice that bad boy in twain.

I managed to lose my pill slicer after a couple of months, and I was pretty cut up about it. …Geddit? Cut up?

Your top tips for having pituitary surgery

Have you had transsphenoidal pituitary surgery? Do you have any top tips you think I’ve missed? Let me know in the comments!

birth · health · post-partum · pregnancy · thyroid

Could You Have Post-Partum Thyroiditis? I Do!

Any regular readers of this blog will know that for a few months now I’ve had some mysterious medical issues that my doctors have been somewhat baffled by. I’ve had blood tests, an MRI of my pituitary, and a scan of my thyroid with radioactive technetium. Despite being told at the hospital that the results of my scans would be available within a couple of days, it took a month before anyone actually got back to me with the results. I tried to take that as a sign that it wasn’t anything incredibly serious, but anyone who’s had extensive dealings with my hospital’s admin systems would know that you wouldn’t want to stake anything particularly important on their effective functioning (like, say, your long term health…)

Anyway, I finally heard from a doctor, and he confirmed that they believe I have a condition called post-partum thyroiditis. Even though I already have a pre-existing thyroid condition, I’d never heard of this quite common post-pregnancy thyroid illness. So what is post-partum thyroiditis?

Post-partum Thyroiditis

What is post-partum thyroiditis?

Long story short, this is caused by your thyroid gland going a bit haywire due to a rebounding immune system after pregnancy. It typically starts with having thyroid hormones that are too high (hyperthyroidism) for a few months. Then it either just returns to normal, or the thyroid hormones dip too low (hypothyroidism) for a few months – or even permanently.

How would I know if I have it?

Post-partum thyroiditis is actually quite a common condition with around 5 – 10% of women experiencing it, although a lot of the time the symptoms are just ascribed to normal post-pregnancy recovery. Most women initially experience hyperthyroidism – symptoms can include a racing heartrate, anxiety, tiredness, difficulty sleeping, achey muscles, twitching or shaking, feeling hot or sweating a lot, and weight loss. Obviously most of those could easily be ascribed to the post-birth recovery period and/or sleep loss thanks to your new baby.

The only way to know for sure if you have post-partum thyroiditis is to have blood tests to check your thyroid hormone levels. So if you’re concerned that you may have this condition, please make sure you speak to your doctor about it.

How is post-partum thyroiditis treated?

Hyperthyroidism as a result of post-partum thyroiditis (let’s just call it PPT) is not usually treated beyond beta blockers to reduce the impact of the symptoms of fast heartrate, anxiety, etc. Conveniently, I’m already taking beta blockers as my doctors tend to prescribe them at the first sign of hyperthyroidism, as my heart loves to go too fast and will take literally any excuse to do so.

Hypothyroidism might need to be treated with replacement thyroid hormone if it becomes severe enough. I’m hoping we don’t have to go there.

How long does postpartum thyroiditis last?

How long is a piece of string? Unfortunately, it seems that postpartum thyroiditis is a very variable condition and each woman has a different experience, so there’s no way of saying how long my postpartum thyroiditis will last. It could be a few months, a year, or even longer – sometimes the side effects are permanent.

What are the risk factors for postpartum thyroiditis?

The big question for me was whether my existing pituitary condition (which affects my thyroid) creates a risk factor for postpartum thyroiditis. A quick Google indicates that I’m not the only person with a TSHoma to go on to develop post-partum thyroiditis. But because my pituitary tumour is so rare, when anything out of the ordinary happens the doctors don’t really know what to expect. However, previous history of thyroid issues is a known risk factor for post-partum thyroiditis, as is a history of auto-immune illness.

What are the implications for me personally?

It’s just a case of wait and see, and hope I don’t end up with low thyroid levels, as that could make things complicated in terms of treating it and my pituitary tumour. So please keep your fingers crossed for me!

In the meantime, I’m back to monthly blood tests to monitor my thyroid level and regularly checking in with the hospital.

Are you a postpartum thyroiditis patient in the UK? I’d love to hear about your experience! Let me know in the comments.

health · medication · pituitary

Medical Mystery: An Update

So alas, I am once again in the position of being a medical mystery… Now, I love a murder mystery, preferably an Agatha Christie. But the only medical mystery show I’ve ever watched was House M.D., in which the patients invariably had to almost die before their doctors worked out that they did not, in fact, have lupus. I’m not so keen on the near-death approach to diagnosis, if I’m honest.

So back in early April, I re-started my medication (cabergoline). I had stopped it in late pregnancy in the hope of breastfeeding, but the symptoms of my TSHoma tumour returned after a few months, so I had to start taking it again.

As per usual, the doctors wanted to monitor my thyroid levels. My tumour produces Thyroid Stimulating Hormone (TSH – hence why it’s called a TSHoma), which causes my thyroid gland to over-produce thyroid hormones. So as the medication works, you would expect my TSH levels to reduce, and my thyroid hormone levels to reduce too.

Because my health issues relate to the endocrine system, all the twists and turns of this mystery thriller basically just involve different blood test results. For some reason no major TV networks have shown interest in picking up a pilot based on this concept.

So: my TSH levels have indeed been reducing since re-starting my medication. But my thyroid hormone levels have actually been increasing. Quite a lot. I now have thyroid levels way above the normal range. This makes no sense if the high thyroid levels are caused by the pituitary tumour.

Cue dramatic music. Dr House gives the camera a quizzical look.

Interchangeable Hot Younger Doctor 1: “Could it be lupus?”

The other interchangeable hot young doctors smile and roll their eyes. They don’t know much, but they know that, for some reason, it’s never lupus.

Instead, it looks as though something else is causing the raised thyroid levels. This could potentially be a thyroid condition like Graves Disease, which is an autoimmune illness that causes the body to over produce thyroid hormone, or potentially a growth on my thyroid gland itself. We don’t know. At first, I think the doctors hoped it was just a weird blip on my blood test results, but repeat testing has shown the same pattern.

So my doctors have put me on a higher dose of cabergoline, to make sure that the TSHoma tumour on my pituitary gland is definitely being treated, and ordered some more blood tests to see if it could be Graves Disease. I’m hoping to hear from them this week to find out what we know and what other testing needs to be done. I’m guessing they’ll want to rule out lupus.

A quick search online shows there are only four known cases ever of someone with my condition (TSHoma) also having Graves Disease. One of the trickiest things when you have such a rare condition is that when something out of the ordinary like this happens, you’re just flying blind. No-one really knows what’s going on. Sadly, it seems unlikely that a grizzled, curmudgeonly doctor will reveal he’s known what’s going on the whole time and has just been holding the information back for 50 minutes in order to build dramatic tension.

So please keep your fingers crossed for me, and I’ll update you as soon as we start to unravel this medical mystery…

birth · health · medication · pituitary · pregnancy

My Experience of Pituitary Tumour and Pregnancy

I’ve already written about my experience of hypermobility and pregnancy (and birth!), so it feels like time to write about my experience with my pituitary tumour (pituitary adenoma).

My Experience of Pituitary Tumour And Pregnancy

Before trying for a baby

My husband and I went to talk to my endocrinologists about the possibility of trying for a baby over a year before we actually wanted to start trying (we had a wedding in between!). And it was just as well we did, because there was a lot of planning involved…

At the time, I was taking a medication called Somatuline Autogel (lanreotide) for my pituitary adenoma. There’s no data on its safeness (or otherwise) in pregnancy, and in fact it isn’t even technically licensed for my condition. I have a pituitary tumour which produces thyroid stimulating hormone (TSHoma), and they’re so rare that there actually isn’t any medication licensed for the condition. However, I’ve taken lanreotide on-and-off for nearly ten years, and fortunately it always worked well to control my symptoms.

But because it’s not known how safe lanreotide is in pregnancy, my doctors were keen to see whether I could manage without the medication during a pregnancy – or whether my thyroid levels would start going up again. So I agreed to do a trial period off the medication. All went well for a couple of months, and then I could feel my symptoms coming back, and blood tests confirmed that my thyroid levels had risen again. So, a new plan was needed.

My doctors then suggested trying cabergoline, a drug that’s used for a different kind of pituitary adenoma called a prolactinoma. They estimated to me that, based on their previous experience, there was about a one in five chance of it working for my tumour as well. And although cabergoline is not licensed for use in pregnancy, there have been more case studies etc. of women using it in pregnancy, so my endocrinologists thought it would be a better bet than lanreotide… If it worked for me.

So I have it a go… And it worked! To my surprise, it was just as good as lanreotide, if not better because it’s much more convenient. With cabergoline, I take two tablets per week (weird schedule, I know), whereas with the Somatuline Autogel it was an injection once a month which my husband had to do, and we had to keep the injections refrigerated beforehand. Plus, with Somatuline, because it messes with the function of your gallbladder, I had to eat an extremely low fat diet for 5 days out of each month, which could be a real pain when we were out and about. So not having to do that was a real bonus!

During Pregnancy

During the course of my pregnancy, I had to have blood tests once a month to check on my thyroid levels. Fortunately, they were well controlled throughout the whole time. I also had some bonus hospital visits so my endocrinologists could check up on other symptoms. Because the pituitary naturally enlarges during pregnancy, they like to check up on your visual fields to ensure that between that and the tumour, it’s not putting pressure on your optic nerve.

Planning for Breastfeeding

I really wanted to try breastfeeding, but being on cabergoline meant that could be tricky. Cabergoline inhibits the production of prolactin – the hormone that stimulates the production of breastmilk. My doctors recommended that I stop taking cabergoline six weeks before my due date, to give myself the best chance of breastfeeding, as the drug takes about four weeks to leave your system. Hopefully I would then be able to breastfeed for a couple of months before my symptoms returned and I had to go back on the medication.

So, I duly stopped taking cabergoline at 34 weeks… And then Little Man showed up at 37 weeks, rather earlier than expected! Breastfeeding didn’t work out for us. Although I made colostrum, my milk never came in, and it’s not clear whether it’s because the cabergoline wasn’t out of my system yet, or the stress and separation when Little Man ended up in intensive care for several days.

Planning for the Birth with a Pituitary Tumour

With regards to the birth, my endocrinologists were confident I could have a normal birth. Because the pituitary is involved in producing the hormones that kickstart childbirth, I did ask whether there was any reason to think that I might be less likely to go into labour naturally. But the doctors said that there was no evidence that women with pituitary tumours are more likely to need inductions.

The doctors did specifically write in my notes that I was allowed to have an epidural, as they said sometimes people can mistakenly think it’s not allowed after having transsphenoidal pituitary surgery. They also advised that there should be steroids on hand, to be administered if I experienced any unexplained low blood pressure, in which case an adrenal crisis should be suspected. Fortunately it wasn’t needed.

What advice do I have for other women with a pituitary tumour who are trying for children?

After two transsphenoidal pituitary surgeries, there was always a risk that the function of my pituitary gland had been damaged by the surgery and I might find it difficult to conceive. Fortunately we were very lucky and I was able to get pregnant. Because we knew it might take a while, we planned a long time ahead, and I’d definitely recommend talking to your endocrine team to work out a plan of action well in advance of when you want to start trying to conceive.

Trying me on/ off various treatments took over a year from when we first discussed it, due to delays from the hospital’s administration and us deciding to go back on my regular medication for the three month period of our wedding and honeymoon, to make sure I felt well for it. If we had been actively wanting to start trying for a baby, that would have felt incredibly frustrating and slow. It was frustrating enough even when we knew we didn’t want to start trying until after the wedding!

Do you have any experience of pregnancy and birth with a pituitary tumour which you can share? Let me know in the comments!

my experience of pituitary tumour in pregnancy and birth the sickly mama blog adenoma
health · medication · pituitary

Cabergoline Side-Effects: My Medication May Cause Gambling Addiction

So after much chasing of the hospital, finally they have agreed that I should go back on my medication for my pituitary tumor. The tumor is a very rare kind, which produces thyroid stimulating hormone, and in fact is so rare that there are no medications which are certified for treating it. Therefore, my endocrinologists use medication for other types of pituitary tumor, off-label. It’s called cabergoline, and it has some pretty niche side effects… As you may have guessed from the title of this post. I’m going to write about cabergoline side-effects, but first: why am I on this medication in the first place.

When I wanted to try to get pregnant, the doctors tried taking me off medication completely, but the symptoms of high thyroid levels came back after a couple of months. So they tried me on cabergoline (Dostinex for any Americans reading), a dopamine agonist which is usually used for treating a much more common type of pituitary tumor called a prolactinoma. And – surprisingly – it worked! I was delighted, because the doctors had suggested there was only a one-in-five-ish chance that it would actually work to treat my condition – thyrotropinoma, a.k.a. a pituitary tumour which secretes thyroid stimulating hormone.

The thing about cabergoline though, is that it has some particularly weird possible side effects…

cabergoline side-effects gambling addiction side effects the sickly mama blog pituitary tumour treatment

Possible side-effects of cabergoline…

All dopamine receptor agonist drugs come with a risk of impulse control disorders. That means compulsive gambling, compulsive shopping, hypersexuality, binge eating and really any form of addictive or impulsive behaviour. As well as prolactinoma, cabergoline is prescribed for Parkinson’s Disease, often in much higher doses. Here’s an article about a Parkinson’s Disease sufferer who experienced extreme impulse control side effects from taking the drug. It’s from the Daily Mail but well, what can you do. Reputable newspapers don’t usually go for true life scandal about medication that turns you into a transvestite con artist.

Taking A Gamble

Some patients won lawsuits against the companies who manufactured these drugs, for failing to provide a warning about these side effects, because of the effect the medication had upon them and the impact on their lives. There have been other cases where people have escaped prison sentences after committing crimes, by successfully evidencing that their behaviour was caused by the medication – although that argument doesn’t work for everybody.

These side effects aren’t especially common in pituitary patients, but my endocrinologists warned me about them before I first started on the drug. Every time I go to the hospital with my husband, they check in with him that I haven’t started gambling or compulsively shopping. Obviously they check in with me too, but they like to get his more unbiased view!

Other Side-Effects (It’s Not Just Gambling Addiction)

More common side effects of cabergoline include possible cardiac effects, low blood pressure and dizziness, nausea and vomiting, and hallucinations. Other less common side effects include psychosis and delusions. It’s really a list of side effects that makes you think twice about taking the medication. I’m a member of several Facebook groups for pituitary patients, and there are often anxious posts from patients who have been prescribed cabergoline who are concerned about the possible side effects.

Ergot-ta Be Kidding Me

So why all the crazy side effects? Well, cabergoline is actually derived from ergot. Ergot is a kind of fungus which can grow on grains and, if ingested in large amounts, will make you crazy – hallucinations, delirium, psychosis and mania, among other things. It’s even been suggested that ergotism might have been the root cause of the Salem witch trials, with ergot poisoning causing symptoms of “bewitchment”. So perhaps it’s not surprising that cabergoline can have some pretty crazy side effects too.

My Experience Of Cabergoline Side-Effects

Last time I started the medication, I got on with it pretty well. I did experience some dizziness and low blood pressure – I tend to have somewhat low blood pressure anyway – but the longer that I took the drug, the more my body adapted to it, and the blood pressure issues resolved. So I’m hoping that I won’t have any major problems this time… Fingers crossed! But if you see me in Ladbrokes, maybe let my husband know.

crazy cabergoline side-effects the sickly mama blog side effects dostinex dopamine receptor agonist

health · pituitary · Uncategorized

My Pituitary Gland Has A Great Sense Of Timing

So, I have a super rare tumor on my pituitary gland. It’s called a TSHoma or thyrotropinoma, because it produces thyroid-stimulating hormone (TSH). I’ve had surgery on it twice but we’ve never quite been able to get rid of it, there’s still a teeny stumpy bit left.

There’s actually technically no approved medical treatment for my condition, because it’s so rare, but for many years I was treated off-label with a medication called Somatuline, which is used for another kind of pituitary tumor and worked well for mine. However, when my husband and I decided we wanted to try for a baby, my endocrinologists suggested trying another medication, also off-label, usually used for yet another kind of pituitary tumor. It’s called cabergoline and they suggested trying it because it’s been used slightly more often in pregnancy compared to the other medication I was on. My doctors thought there was maybe a one in five or one in six chance that it would work to treat my tumor, so I was pretty pleased when it did.

Cabergoline stops you lactating, because it inhibits the production of prolactin by the pituitary. As I wanted to have a chance at breastfeeding, we agreed that I would stop taking the medication six weeks before my due date with Little Man, to give it a good chance to leave my system and allow me to produce breast milk before he arrived.

As it turned out, Little Man had his own plans. My waters went at 36 weeks and 5 days, and he arrived at 37 weeks exactly (just 2 and a half hours away from being technically premature!). Breastfeeding didn’t work out for us, but when I saw my endocrinologist a few weeks after the birth, I wasn’t having any symptoms from being off the medication, so we agreed I would stay off it for now. I was due to return in three months, and get in touch if my symptoms came back.

Well, now that coronavirus is here and I really don’t want to go to the hospital or GPs, my symptoms are back and I want to go back on my medication. It’s not terrible so far, just occasionally a fast heart rate, feeling a bit jittery, and the odd shooting pain in my neck (always the most unambiguous sign that my thyroid is doing something weird).

The hospital has introduced a great new telephone system where you can’t just phone a department directly, you have to go through a central switchboard. This is great because it means that you can wait on hold for ages to explain why you’re calling to the switchboard operator, who then explains that they can’t help you and will need to put you through to the department. Then you’re on hold again, which is brilliant because the hold music is not at all deeply irritating. Then either a) no one answers and the call just terminates, or b) someone answers and you get to explain why you’re calling again, so they can tell you that they’re not the right person to talk to and they’ll put you through to the relevant person. Then the relevant person isn’t in, so you’re told they’ll call you back. Then, when they don’t call you back, you get to start the whole process again.

It really is a genius of modern system design, because previously when I had to call the hospital, I sometimes only reached medium levels of furious hatred at their appalling administration, whereas now I reach maximum capacity every time.

So, last week I sent an email to my endocrinologist’s secretary, in a bid to avoid having to telephone hundreds of times until my soul is macerated completely and starts to run out of my nose. However, I have not heard back and my symptoms are only getting more noticeable, so I guess telephoning is now my only option. I can’t wait!

The pituitary gland is also known as the hypophysis. And that’s not just a hypothesis.