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.
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…
Well, I’ve written about my experiences with hypermobility in pregnancy and birth, and again about how my pituitary tumour impacted my pregnancy and birth. So it seems logical to write about how my asthma impacted me as well, and complete the trilogy… How did pregnancy affect my asthma?
My Experience of Asthma in Pregnancy
But I’ve been in two minds about writing this post, because actually my asthma barely affected me at all! In fact I noticed a massive improvement in my asthma symptoms while I was pregnant. Normally they’re worst around June; my asthma seems to be particularly triggered by hayfever and then made worse by humid weather. Last year when I was pregnant, I spent the end of May in Japan at a family wedding, and when I got back I realised my asthma seemed much better than usual. Seems strange, huh?
Does pregnancy make asthma better or worse?
I spoke to my asthma nurse about this recently when I went for a review (she’s the best! Shout out to all the awesome asthma nurses out there). She said that roughly a third of people with asthma notice an improvement of their symptoms in pregnancy, a third notice a deterioration, and for the rest there’s no change. So I guess I was one of the lucky 33%. I felt so crap being pregnant anyway, I’m so glad I didn’t have to deal with my asthma playing up too.
Why does pregnancy affect my asthma?
Looking online, there are plenty of asthma sites which also advise that asthma may improve or worsen in pregnancy. But none of them seem to explain why. I assume it’s the usual “pregnancy hormones” explanation, which is so vague as to be no explanation at all. So I’m awarding a gold star to any health professional who can let me know in the comments below why specifically it is that asthma is so variable in pregnancy!
Does asthma affect you when giving birth?
I also didn’t find that my asthma affected the birthing process, fortunately. As I have exercise-induced asthma, I did wonder whether labour could trigger my asthma at all. I took my inhalers to the hospital with me (make sure you have spares in your hospital bag just in case!). But luckily, I didn’t need them during the birth.
In fact, apparently asthma attacks during labour are very rare, which is believed to be because of the natural steroids that your body produces during labour. The Asthma UK website has more information about asthma and birth, which may also reassure you.
What were your experiences of asthma during pregnancy and birth? Let me know in the comments!
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 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!
The other day, I was sat with Little Man on my lap I’m the evening. This is, of course, a common occurrence. He’d been very difficult all day with an upset tummy and teething pain. I’d just been playing on the floor with him to distract him, doing tummy time and walking practice and licking Mr Bun Bun (the best part of playtime, of course). I sat back down with him in the armchair, and five minutes later I completely ran out of energy. And I knew I’d overdone it.
I get tired like everyone else, but I also get fatigued, thanks to my medical conditions, and although they sound similar, they’re not the same thing. These days I’m pretty good at managing my activity levels to avoid getting fatigued, but being a parent creates a new challenge in that respect, as you can’t plan for when the little man decides to kick off! So, what are the differences between normal tiredness and fatigue? How can you tell them apart?
Fatigue vs. Tiredness
How is fatigue different from tiredness?
I think a lot of people who haven’t had a chronic illness think that having fatigue is the same as being tired. Which is understandable if it’s not something you’ve experienced! Fatigue does indeed involve feeling tired, but also often includes:
Difficulty concentrating or “brain fog”
Feeling physically weak
Difficulty with decision making
Plus, the sensation of tiredness/exhaustion is often quite extreme.
As well as having more extensive and severe symptoms than tiredness, fatigue is different in terms of what causes it and how you fix it. It can be caused by long-term illness, including mental illness, or stress.
Most significantly, it often doesn’t resolve with sleep, and the feeling of tiredness is disproportionate to the level of activity you’ve been doing. As a result, it can be quite tricky to understand where your limits are and not go too far. In my case, the other day I was completely surprised that I had apparently overdone it and hit a fatigue wall. I felt like hadn’t had much more of a strenuous day than usual, but obviously it was enough to tip me over the edge.
My experience of fatigue
Firstly I should say that I’m fortunate because my fatigue has improved a lot over the past few years. I first experienced fatigue when I had glandular fever at university and afterwards was left with post-viral fatigue syndrome for a number of months. Then once that started improving, my pituitary tumour started giving me more symptoms…including fatigue!
It’s gradually improved since my second pituitary surgery, when I started taking medication to treat my tumour (lanreotide). The improvement has been so slow as to be imperceptible, but looking back five years it’s a huge change in retrospect. I think as well that I’ve got much better at managing my fatigue in general. I can usually do a busy day or a late night, as long as I have nothing to do the next day. I’m also fortunate that my husband is really helpful at understanding and helping me manage my symptoms.
For me, it’s about ensuring enough downtime around periods of activity. It doesn’t need to be sleep necessarily, but just rest time without much physical or mental exercise. For instance, if I’m doing housework, I need to make sure I sit and have a short break every 15 – 20 minutes or so. If I don’t, I can end up so exhausted I’m useless for the rest of the day. When I got married, my husband had to act as a consultant for my bridesmaids organising my hen do, to ensure that it was enough of a balance of things that I’d be able to make it to the end!
When I’m tired, I can usually power through. Also, even severe tiredness tends to come and go over time, so I’ll feel better for half an hour before the tiredness hits again. When I’ve got to the point of being fatigued, though, there’s no powering through. I am completely useless.
What’s your experience of fatigue? Let me know in the comments!
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…
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.
Firstly, I want to make it totally clear that I’m not advocating that people shouldn’t use painkillers to manage pain. But thanks to the current coronavirus lockdown, I’ve had a couple of situations where I couldn’t use my normal painkillers, and it got me thinking about coping with pain when you can’t use painkillers.
Then I also have an issue with very bad sinus headaches, which is a hangover from two lots of brain surgery done via my nose (transsphenoidal surgery). They get so bad that they also have the fun side effect of making me very nauseous, to the point that I have actually thrown up from them several times. They are aggravated by pollen/hayfever, so tend to get worse at this time of year. Normally, I would take paracetamol because ibuprofen doesn’t work for them… But we don’t have much paracetamol in the house, and it’s been hard to get hold of lately with the coronavirus panic buying. So again, I’ve been trying to avoid taking painkillers.
And so, I thought I’d write a post about some of the ways that I find helpful for coping with pain (especially joint pain, because that’s my most common issue). They probably won’t work for everyone, or every type of pain, but I hope you might find it useful anyway.
Coping With Pain When You Can’t Use Painkillers
I find that heat is so great for managing my joint pain. Pre-baby, I would often try to have a bath or at least a hot shower if they were playing up, as it helps the pain so effectively that I often wouldn’t need to take painkillers at all. Now I have a three-month old baby, I can’t just run off for a bath at the drop of a hat (sadly). So I use a hot water bottle or (preferably) a microwaveable wheat bag. Extra layers also works, but while it’s easy to put extra pairs of thick socks on if my ankles or feet are hurting, it’s not so easy to layer up and warm up a hip joint.
Conversely, ice can also help certain types of pain, especially sports injuries.
2. Breathing Exercises
When I was pregnant, I did an online hypnobirthing course with The Positive Birth Company. Well, actually I did about 60% of the course, because I was totally caught out by Little Man arriving three weeks early. One of the big aspects of hypnobirthing is using breathing exercises to manage pain. I found this really useful when giving birth; I think it’s particularly good for pain which is severe but comes and goes – like, say, having a baby…
3. Distract, Distract, Distract
I always find my joint pain is worst at night, when I’m in bed and trying to sleep. But actually, chances are that it’s not any worse then than it is any other time; it’s just that there aren’t any distractions to take my mind off my poor sad joints. Even something as simple as listening to music or reading a book can help take your mind off ongoing low-level pain. For worse pain, something interactive and requiring concentration is better as it forces your attention away from what’s hurting – like playing a game or reading aloud.
4. Movement and Massage
Probably depends on what’s causing your pain, but for my joint pain, gentle movement is really helpful to take the pressure off my joints. The other day, I was holding Little Man, who was finally sleeping after a very grumpy day (he didn’t poop for three days! Enough to make anyone grumpy I’m sure), and my hips were playing up so badly but I didn’t want to move him! When he eventually woke up, I went to do some chores in the kitchen and the pain in my joints improved significantly just from the movement.
Linked to this, massage can be really great for pain – although obviously some pain locations are more accessible than others.
Following on from the above, in the longer term, physio can help with some forms of chronic pain. I always assumed physiotherapy wasn’t really very effective, because I’d known a lot of people complain that it didn’t work for them. But when I was pregnant with Little Man, I actually tried physiotherapy for the first time, and I found it incredibly effective.
My hip pain got a lot worse very early on, from the pregnancy hormones (which make your joints looser) and extra weight. It was so bad that I was waking up constantly throughout the night in huge amounts of pain from my hip partially dislocating in my sleep. Then I would swap sides and sleep on the other side for a bit, until that one started hurting and woke me up to swap sides again. It wasn’t fun, although I guess it was great practice for waking up constantly at night with the baby once he arrived! In fact, even on bad nights when he was teeny tiny, Little Man woke me up significantly less frequently than my hips had done throughout my pregnancy.
It took a number of weeks to get an appointment with a physio, but I got there, did a full assessment and got several exercises aimed at strengthening the muscles around my hips, to hold the joint in place better. It was about six weeks of religiously doing the exercises before I noticed results, but the improvement was really noticeable and made such a huge difference to the rest of my pregnancy. So, if you haven’t already – I recommend giving physio a try.
6. Check Skeletal Alignment and Muscle Tension
If this one sounds super hippy-dippy, bear with me. A few years ago, I realised that my headaches (normal headaches, as opposed to sinus headaches where the pain is in the front of my face around the nose and eyes) are often either caused or at least aggravated by tension in my neck and shoulders. It could be from sleeping funny, being crouched over a laptop, or just being stressed and tensing up. Making a conscious effort to relax my neck and shoulders (maybe coupled with a gentle massage) can really help relieve those headaches.
Similarly, with my joints, I’ve realised that when I’m experiencing joint pain the first thing to do is check the alignment of the joint, i.e. are the bones lined up straight or am I sitting, moving or tensing in a way that sends pressure though my joints in an unnatural way. Because I have hypermobility, it’s easy for my joints to partially dislocate or just misalign without me actually noticing, and that can unsurprisingly cause pain.
7. Keep Active
When I was first diagnosed with hypermobility spectrum disorder (as it’s now known), the rheumatologist told me that the most important thing to keep pain at bay was to keep active and build up muscle to support my joints. At the moment, on lockdown, I’m doing yoga pretty much every day with my husband and it’s great exercise that’s very low-impact and thus kind on your joints. I definitely recommend it, and you can find specific yoga flows online that are tailored to particular issues, such as lower back pain or crappy hips (technical term).
Your top tips for coping with pain when you can’t use painkillers:
Do you have any tips or techniques for pain management/coping with pain without medication that work for you? Let me know in the comments below!
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!