coronavirus · health

Please Become A Blood Stem Cell Donor

Normally when I write my blog, I just hope that my readers take time to read my posts and enjoy them. Today’s a bit different, because today I’m asking you to do something. Please, please, please sign up to be a blood stem cell and/or bone marrow donor.

Why am I asking you?

This is Adeline

She’s nearly four years old and was diagnosed with a rare form of bone marrow failure almost two years ago. Ever since, Adeline has been waiting for a lifesaving bone marrow transplant. Recently, it seemed a donor match had been found, but her family have now heard that this has fallen through, and once again no matches are available.

adeline davies bone marrow failure become a blood stem cell donor the sickly mama blog

This is what Adeline’s mum has to say:

“One 3 minute phone call, I expected to get a date for transplant but instead heard the words: ‘The donors we have are not an option any longer,’ and ‘there are currently no matches for Adeline.’ It felt like a dagger in the gut and in the heart. Back to the start, just with far less hope.”

“The only way of saving Adeline’s life is a bone marrow transplant. So we need all the help and all the sign ups we can get!
Please register with DKMS, Anthony Nolan or any stem cell/bone marrow registry. All it takes is a few mouth swabs and you can save a life like Adeline’s.”

You can follow Adeline’s journey here.

Did you know?

Because of Covid, nearly 19,000 fewer people joined the stem cell register this year. That’s a massive drop, and given that many people struggled to find a donor match even before the current crisis.

Already, only 60% of transplant recipients receive the best possible stem cell match, and that drops to just 20% for people from black, Asian or ethnic minority backgrounds. More donors from black, Asian and ethnic minority backgrounds are desperately needed.

What does blood stem cell donation involve?

90% of blood stem cell donations are done by Peripheral Blood Stem Cell collection, a straightforward process similar to donating blood, although you will need injections in the days leading up to your donation. There’s no need for an overnight stay in hospital.

10% of donations are done via bone marrow transplant. This requires a general anaesthetic and a couple of nights in hospital. You can find out more about each method of donation here.

What if I can’t donate?

Not everyone is a suitable donor due to age and/or health conditions. Unfortunately, I’m not eligible to donate due to my pituitary tumour, which is why I’m trying to help out by spreading the word and encouraging others to become a blood stem cell donor if they can. If like me you can’t donate, please share the word on social media and in person to encourage others to sign up, and consider making a financial donation to the charities that run the donor registries.

Plus, remember to wear your masks, wash your hands, and social distance to limit the spread of coronavirus. A Covid infection could be the difference between life and death for someone waiting for a blood stem cell transplant.

Please, if you can, become a blood stem cell donor

So please do consider signing up to the donor registry today. You might just save a life.

health · medication · top tips

How To Decide Whether To Have Surgery/Radiation/Take the Medication…

I’m a member of lots of Facebook support groups for people with pituitary tumours and other chronic or long-term illnesses. One of the most common types of post is people saying they’re not sure whether or not to go through with whatever treatment has been recommended by their doctor. It’s a big decision, and not something that strangers on the internet can really answer for you! But that doesn’t mean there isn’t any process or technique you can use to make healthcare and treatment decisions… That’s why I’m writing this blog.

I want to share a process I learned doing National Childbirth Trust classes when I was pregnant, which I think is a great technique to follow to help you make these kinds of decisions. It doesn’t have to be restricted to use in healthcare settings, either.

The process is called “BRAIN” and it’s an acronym to help you to remember the questions you should ask about your recommended treatment. You should consider:

  • Benefits – what are the possible benefits of this treatment?
  • Risks – what are the risks of doing this?
  • Alternatives – what alternative options are there? Why are they not the recommended option?
  • Intuition – what does your gut feeling tell you?
  • Nothing – what would happen if you don’t do anything?

I think this provides a really great format to have a constructive conversation with your healthcare provider, and to ensure that you’re fully informed about your treatment. It can be helpful to take this list to your appointments so you can work through each question when you see your doctors (if you’re anything like me, you forget what you want to ask if it’s not written down!), to inform your treatment decisions.

I’ve also written previously about my experience of pituitary tumor surgery and making the decision to go ahead with surgery (twice) – you can read about that here.

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 · top tips

How To Get Your Doctors To Listen To You

It took me about five years to get diagnosed with my pituitary tumour. That’s a guess, really – looking back, the first symptom I had was my hair starting to fall out, which started when I was around 16 years old. I didn’t get a diagnosis until I was 21, and I spent so many years wondering: how do you get your doctors to listen to you?

Now don’t get me wrong, my illness is super rare, but five years is still an incredibly long time to wait for a diagnosis. For the majority of that time, I had steadily increasing symptoms of hyperthyroidism, and was consistently told it was all in my head. I went to the doctors numerous times about:

  • Hair falling out
  • Heart palpitations and fast heartrate
  • Fatigue
  • Getting ill all the time – I caught every cough and cold going, and half the time it would turn into a chest infection or sinusitis or tonsillitis

My GPs pretty much just kept doing the same blood tests, which came back fine, or simply suggesting I was stressed and asking me how things were at home. I actually got to the point of wondering whether it was possible to be so stressed that your hair falls out without actually feeling stressed out about anything at all (other than the fact that your hair is falling out, ironically).

It was only when my resting heartrate suddenly jumped to 140 beats per minute (a normal heartrate is 60 – 100 bpm) and there was something unambiguously WRONG with me that they started taking me seriously and sending me for more tests and scans, and eventually worked out what was going on. I’ve since experienced, both with my own medical problems and those of others, numerous other occasions of feeling not believed/not listened to by doctors. So, I wanted to share my best tips for getting your doctor to listen to you and take you seriously.

5 Ways To Get Your Doctor To Listen To You

1. Be Organised

When you’re on the spot with a busy GP who you feel is being dismissive of your concerns, it can be difficult to remember everything you wanted to say or all the questions you wanted to ask. Write your key points down in a notebook or on your phone before you go, and take it with you to the appointment. You can also jot down the key points the doctor says during the appointment, to ensure you don’t forget anything.

Stick to your guns and make sure you say everything you wanted to say at your appointment (but make sure you get straight to the point and don’t waffle – doctors are busy people!). If your doctor interrupts you, you can go back to what you were saying later on (easiest if you have a list of your key points). If your doctor asks you only closed questions (yes/no questions), you can expand on your answers and give more detail.

2. Be Specific

If you are experiencing symptoms which concern you, write down:

  • How frequently they are occurring
  • How long they last
  • The impact this has on your daily life
  • Anything you’ve done to try to treat the symptoms and how successful this was

And tell your doctor this specifically. If you say something like “I’m getting quite a lot of bad headaches”, this is open to interpretation. How bad is “bad”? How often is “quite a lot”? On the other hand, if you can say “I’ve had five headaches in the last two weeks. They lasted between three and six hours, and I had to go to bed every time because paracetamol didn’t help. I’ve had to take three days off work because of it”, that helps your doctor to gauge exactly how serious your symptoms are.

3. Bring A Friend

Having someone else there (partner, parent, friend, housemate) can also be helpful, especially if that person can attest to the impact your symptoms have had. When my husband was quite poorly with his gluten intolerance, he kept going back to the doctors about his symptoms and getting fobbed off. When I went with him to one appointment and also talked about how he had lost a lot of weight and wasn’t himself, we finally got the doctors to listen and refer him to the hospital for proper investigation of his symptoms. I think if you’re relatively young and fit-looking, it helps to have someone else back you up when explaining how I’ll you’ve been.

4. Ask Questions

If you feel like you’re being fobbed off or you’re not getting the treatment/investigations you expected, asking questions is the way to go. Questions like:

  • “I thought you might want to do some blood tests. Can you just explain to me why you’re not doing that?”
  • “If you’re not concerned at the moment, are there any particular symptoms I should look out for that would be more of a concern?”
  • “If my symptoms don’t improve, how long should I wait before I come back to see a doctor again?”

Asking questions can help to open up more of a dialogue between you and your doctor, and also give you more reassurance about why the doctor is making certain decisions.

5. Remember Your Options

Ultimately, if your doctor isn’t listening to you, you can always ask for a second opinion from another doctor. Although the ideas listed about should help to get your doctors to listen to you, they won’t always work and not all doctors will be interested in listening. Changing doctors may be a better option than feeling like you’re banging your head against the wall with a physician who isn’t taking you seriously.

What are your top tips for getting the most from your interactions with doctors and healthcare staff? How do you get your doctors to listen to you? Let me know in the comments!

how to get your doctors to listen to you sickly mama blog graphics
health

Going To Hospital During Covid-19 Lockdown

I recently had to attend hospital for an MRI scan and scan of my thyroid gland, as my doctors try to work out why I’m experiencing high levels of thyroid hormones at the moment. Although the UK has started easing Covid-19 lockdown measures, obviously in hospitals they’re still very strict about the lockdown rules, so I thought it might be helpful to write about my experience, to help ease your mind if you do need to attend hospital at the moment.

Going To Hospital During Lockdown

28 Days Beta

The hospital seemed very quiet and empty. I’m used to going there regularly with all my health issues, and it’s always a bustling place. Not currently! There were whole corridors completely devoid of human life. It was like being in a really boring zombie movie, where the zombies are quite neat and tidy and make sure to mop the floors once in a while.

photo of hospital corridor during coronavirus lockdown 2020
I am legend(ary with a broom)

In waiting areas, chairs had been moved to a distance of 2 metres apart, and where there were fixed groups of chairs, they taped off every other chair to create gaps. In one department, they had actually zoned the waiting area and each person was directed to their own personal zone! It did mean there was less capacity for waiting, and I saw one guy who turned up very early for his appointment being turned away due to lack of space, so that’s worth being aware of if you’re usually an early bird.

Everyone’s An Expert

Everyone is required to wear face coverings in the hospital at the moment. I brought my own mask (sparkly face mask by the amazing Velvet Jones Bespoke), but they were handing out free paper masks at the main entrances, and most people just seemed to be taking the free masks… Not sure that’s great for our cash-strapped NHS, but there you go.

wearing a sparkly sequin face mask at hospital during the coronavirus lockdown 2020
If you’re going to wear a face mask, it might as well be sparkly!

As a result, walking around the hospital you get the impression that everyone you see is a surgeon, because they’re all wearing surgical masks. There are a lot of sloppily dressed surgeons out there, I can tell you.

Visitor Free Since ’93

Now all hospitals are different at the moment, my hospital has started allowing some limited visiting of inpatients, but if you’re attending as an outpatient you’re not allowed anyone with you, unless they’re your carer or you’re a parent accompanying a child.

Break It Off

The food halls, shops and coffee outlets at the hospital were mostly closed. There was one coffee shop, the canteen and one mini supermarket open, both using social distancing rules. Everyone behind the counters wore masks and were behind plastic screens as well.

I had a big gap between my first and second appointments, so I was relieved that the main food hall was still open. Tables had been moved two metres apart and there was a man with a disinfectant spray constantly on hand, swooping in and cleaning tables when people left. It was very quiet though, only a few people in the whole place. You were allowed to take your mask off to eat and drink in there!

hospital dining hall during the coronavirus lockdown 2020
Table for one

One MRI, No Waiting

From talking to staff, it sounds like they’re doing fewer procedures and seeing fewer patients than usual, which is good news if you’re one of the patients they are seeing! The MRI scan lady proudly informed me that they no longer have a backlog (because they’re doing fewer scans than usual) and the technician who did my thyroid scan said it was the first time they’ve done that type of scan in three months.

That was my experience of attending hospital during the coronavirus pandemic. Hopefully it’s useful if you need to visit hospital as well. Or if you’ve had experience of going to hospital during lockdown, perhaps you can share your experiences in the comments below!

health · thyroid

My Experience Of Having A Radioactive Thyroid Scan With Technetium

My doctors told me they wanted me to have a scan of my thyroid to try to help work out why I’m currently experiencing hyperthyroidism. I had a letter inviting me to a technetium thyroid scan, which also specified that I was not allowed to eat seafood or take vitamin supplements containing iodine for 48 hours before the scan. Easy enough! But what is it like to have a radioactive thyroid scan? I’ve written about the whole experience below…

Radioactive Thyroid Scan – My Experience

Before The Thyroid Scan

I arrived at the Department Of Nuclear Medicine at 8.20 on Monday morning, and my immediate thought was that they probably have the most badass name of any hospital department. I got signed in, and waited for my name to be called. The chairs in the corridor were all arranged at two metre intervals, with tape marks on the floor to show safe distancing.

The Technetium Injection Process

Predictably, when my name was called it was pronounced wrong, but that broke the ice with the technician doing my injections, who was lovely. I was taken to a side room to have an injection of a radioactive isotope called Technetium, which sounds like a made-up element from the Marvel universe, but is apparently a real thing. They used to use radioactive iodine for these kinds of scan, but this has now been mostly replaced with technetium, which gives a lower radiation dose.

Before the injection, I was asked some questions. The technician checked whether I have claustrophobia and whether I was able to get up and down from a couch, which I thought was good practice checking for hidden disabilities. Then there was the usual “you’re a woman so please sign on the dotted line that you’re not pregnant” and they checked my identity one last time.

The injection itself was nothing at all! They jab you with a tiny needle, flush the line with saline solution, then give you the technetium injection. Because it’s radioactive, the needle has a little tungsten jacket to protect the technician’s eyes and fingers from the cumulative effect of giving multiple radioactive injections every day! Then they flush the line with saline again.

Before The Gamma Camera Scan

Once you’ve had your injection, you wait about twenty minutes before your scan. I was put in a little side room for radioactive people to wait, because you’re actually emitting gamma radiation during this time. You would never know it at all – you honestly can’t feel a thing! The effective radiation dose of a technetium thyroid scan is about 3.2 millisieverts (mSv) – the average annual dose from background radiation in the UK is 2.7 mSv. So it sounds like a lot, but actually if you live in Cornwall, your average annual dose of radiation is 6.9 mSv, due to the high levels of radon in the ground in Cornwall. And the annual limit of radiation exposure for nuclear industry workers is 20 mSv – so when you put it in context, it doesn’t sound so bad. None of us would worry about spending six months in Cornwall! (Unless you’re a city kid, I guess…)

After twenty minutes, I was called in to have my scan, in a machine called a gamma camera, or scintillation camera. Here’s a picture of the one I was in:

gamma camera scintillation camera machine radioactive thyroid scan with technetium experience sickly mama blog

The Technetium Thyroid Scan Itself

I was asked to have a couple of sips of water, take off my necklace and face mask, and lie on the bed part of the gamma camera machine. Then the panels that you see on the left in the picture above swiveled so one was above my head and one below. They lower the panels until they’re very close to your head – the one above me was almost touching my nose!

The process of taking the pictures was weird because you can’t actually tell that anything is happening at all. There’s no noise like in an MRI scanner – you literally just lie there feeling a bit silly. Each picture took 1 – 5 minutes and at one point they reconfigured the scanner to get a close up of my thyroid gland. Then it was done!

My Experience Of Technetium Thyroid Scan

Overall, this was a really easy procedure. Anything that involves radioactive material can feel a bit scary, but it was totally painless, easy, and comfortable. If you are claustrophobic, you may not enjoy the experience of the scan itself as the machine gets so close to your face, but it’s better than an MRI scan because the machine is open at the sides, so you’re not trapped in a tube, it’s much quieter, and the scans are taken much much more quickly, so you don’t have to spend much time in the machine at all. Plus the staff were very aware that it could be uncomfortable for claustrophobic people and asked if I was okay with the scan etc. while it was ongoing.

What happened after my thyroid scan?

It took a long time to get the results of my technetium thyroid scan and get a diagnosis, but I did eventually get there… Click here to find out what happened next.

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…

asthma · birth · health · pituitary · pregnancy

My Experience of Asthma in Pregnancy and Birth

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!

my experience of asthma in pregnancy and birth the sickly mama blog
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
fatigue · health · hypermobility · parenting · pituitary

Fatigue vs. Tiredness (It’s Not The Same Thing!)

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:

  • Aching muscles
  • Difficulty concentrating or “brain fog”
  • Feeling physically weak
  • Difficulty with decision making
  • Slow responses
  • Poor memory

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!

tiredness vs fatigue they're not the same thing the sickly mama blog