Tag: treatment

Going To Hospital During Covid-19 Lockdown
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Going To Hospital During Covid-19 Lockdown

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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.

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.

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!

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!

My Experience Of Having A Radioactive Thyroid Scan With Technetium
thyroid

My Experience Of Having A Radioactive Thyroid Scan With Technetium

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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:

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.

Medical Mystery: An Update
health · medication · pituitary

Medical Mystery: An Update

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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…

My Experience of Asthma in Pregnancy and Birth
asthma · birth · health · pituitary · pregnancy

My Experience of Asthma in Pregnancy and Birth

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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 Pituitary Tumour and Pregnancy
medication

My Experience of Pituitary Tumour and Pregnancy

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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!

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

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

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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!

My Experience of Joint Hypermobility Spectrum Disorder and Pregnancy
birth · health · hypermobility · pain · pregnancy

My Experience of Joint Hypermobility Spectrum Disorder and Pregnancy

The Sickly Mama5 Comments
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I thought it might be useful to write a post about my experience of Hypermobility Spectrum Disorder (formerly known as Joint Hypermobility Syndrome, apparently rheumatologists like renaming stuff) during pregnancy, as I would have found it helpful to read something like this when I was pregnant!

What is hypermobility spectrum disorder?

Basically it’s an overarching term for a group of conditions relating to joint hypermobility – i.e. in simplest terms, your joints extend more than they’re supposed to. I was diagnosed with it when I was 17, although at that point they called it joint hypermobility syndrome.

I actually meet the diagnostic criteria for a condition called hypermobile Ehlers-Danlos Syndrome (hEDS) although I’ve never been formally diagnosed with it. I did once see a dermatologist about something totally unrelated, and as it turns out he specialised in the dermatology of hEDS and was very excited to run a bunch of tests on my skin.

Hypermobility Spectrum Disorder and Pregnancy

How can hypermobility affect pregnancy and birth?

I was referred to an obstetrician once I was pregnant, thanks to all my stupid medical conditions, and she discussed the key potential issues from my hypermobility spectrum disorder and pregnancy, which basically are:

  • Risk of the birth progressing quite quickly once you reach 4cm dilated.
  • Risk of poor or slow wound healing.
  • Risk of resistance to local anaesthetic.
  • Risk of waters breaking early.
  • Risk of additional pain during pregnancy due to the extra weight and hormone changes placing stress on the joints.

So which of these issues did I actually encounter? I’ll go over them in order…

Increased joint pain during pregnancy

Oh boy did I get this one. It actually started very early too, around week 12 or 13 – well before any significant weight gain, so I assume the issue was caused by the hormone relaxin, which your body produces during pregnancy and causes joints to loosen. If you already have loose, hypermobile joints, that’s not great.

You’re recommended to sleep on your side during pregnancy, but I found that when I slept on one side, the hip on the bottom would gradually partially dislocate during the night and it would eventually wake me up with the pain. Then I’d swap sides, and it would repeat on the other side. By the end of the night I would only be getting maybe half an hour on each side before the pain woke me up, and my joints were so sore and stiff in the mornings. It was not fun, and it got worse as my baby bump got bigger.

I did, however, find that physiotherapy really helped. I saw a great NHS physio who have me exercises to strengthen the muscles around my hips and it made a massive difference to my pain levels, although it didn’t cure it completely.

I’m now four months out from the birth and I would say that although the sleeping pain resolved basically as soon as I have birth, I can feel that the pregnancy has had a lasting effect on my left hip joint, which feels noticeably less stable and more often painful than previously.

Premature rupture of membranes

My waters broke at 36 weeks and 5 days, which is technically premature, but only just (37 weeks is technically full term). Premature rupture of membranes (waters breaking early, if you’re not a doctor) is a risk of hypermobility, so it’s possible that it was related.

Hypermobility and rapid labour

I didn’t go into labor naturally but was induced due to my waters breaking. I was put on the syntocinon drip and told to expect to progress by dilating about half a centimetre per hour. The midwife said she would check on my dilation at about the four hour mark, and that she expected me to progress about half a centimetre dilation per hour.

Two hours later I was in massive amounts of pain, they weren’t letting me have gas and air (because they said you had to be 4cm dilated first) and I felt that I definitely couldn’t cope with another 12 hours or more of it, so I asked for an epidural. The midwife put in the request, but the anaesthetists were in theatre so it wasn’t going to happen any time soon. Shortly afterwards, I got the very distinct feeling that my body was starting to push. I told the midwife but she didn’t seem that bothered. Fortunately, my husband then insisted that she check how dilated I was. She had a look, realised I was fully dilated and that I was indeed pushing.

Then it was panic stations! The midwife apparently had to write loads of stuff on the computer at this point, and thus had to call in a second midwife to take over with me.

Although the dilation stage had happened really quickly, the pushing stage did not. Fortunately they did let me have gas and air at last, which helped a lot with the pain.

They wanted the baby out within two hours of starting pushing (not sure if this is standard or due to the fact my waters had broken a long time before and they were worried about infection). At some point, a doctor appeared and said that if I didn’t make good progress in the next two pushes, they were going to do an emergency caesarian. Seemingly I did make enough progress, because she went away again. Then, some time later, a couple of other doctors appeared and said I had two pushes before they would do a ventouse (suction cup) delivery.

Resistance to anaesthetic

In order to get the baby out, they had to do an episiotsomy, which then needed stitches. They gave me local anaesthetic before the stitches, but it really didn’t work, I kept telling the doctor doing the stitching that I could feel it. So I guess I did have the resistance to local anaesthetic issue.

They didn’t seem to be clued up on my hypermobility and the plan to manage it during the birth, because they also used the normal dissolvable thread for the stitches, instead of the silk sutures I was supposed to have, to assist in case of poor wound healing. The dissolvable stitches were okay for me in the end fortunately. One stitch broke, but that could have been because I did so much walking to and from the neonatal intensive care unit in the week after Little Man was born (he developed a very serious case of jaundice and had to go into NICU). I didn’t notice any issues with healing, thankfully.

To be fair, the mess up with the stitches and the insufficient local anaesthetic may have been due to the fact that after Little Man arrived, I had a big post-partum haemorrhage. The alarms went off and lots of doctors and nurses suddenly appeared in the room, luckily I didn’t need a blood transfusion but was put on a drip and super woozy. So it was all a bit crazy in the delivery room, and I can see how things were missed. But I did think it was disappointing that, despite having flagged a lot of these potential issues well before the birth, we were still left with them not being managed very well – especially the rapid labour. Looking back I am annoyed that I was in so much pain with no pain relief and they didn’t even think to check my dilation to see whether things had progressed further than they were expecting.

What advice do I have for other hypermobile mamas-to-be?

If you’re pregnant and have hypermobility or hEDS, I recommend flagging it early to the hospital, but being prepared to advocate for yourself in the delivery room. It’s hard to do when you’re actually in labour yourself, so make sure your birth partner knows about your hypermobility and how it can affect pregancy and birth, and that they’re confident to advocate for you. I dread to think how long I would have been pushing before they thought to check my dilation, if it hadn’t been for my husband advocating for me.

I also highly recommend physiotherapy, as early in the pregnancy as possible. A lot of hospitals have long waiting lists for physio, so try to get on the list as early as possible.

Are you a mum who’s hypermobile? Let me know about your experiences with pregnancy and birth in the comments!

Teething Sucks, But It Won’t Kill You (Unless You Live In 1842)
Just for fun

Teething Sucks, But It Won’t Kill You (Unless You Live In 1842)

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Little Man is FINALLY asleep in my lap for his after-lunch nap, having missed out completely on all naps this morning due to his stomach playing up. Then once his stomach settled, he immediately moved on to having issues with his teeth, so he is way overdue a sleep and has big bags under his eyes. Oh boy, teething is fun. So obviously, it’s time for another post about teething. This time with a focus on the history of teething (or rather, the history of how humans have thought about teething) through the ages…

The Fascinating History Of Teething

The Jaws Of Death

Did you know that in the past, teething was often actually considered to be a cause of death? In fact, in 1842 in London, almost 5% of deaths of children under one year old were registered as being due to teething. This was probably due to the fact that children died at the age when they were teething, and doctors didn’t understand the actual cause of death. Children who are teething often have an elevated temperature, which is not actually a fever, but again in the past fever was considered to be a part of teething – as were fits, convulsions and diarrhoea. These beliefs go back to Hippocrates in Ancient Greece.

This all seems pretty strange to us now, when teething is regarded as an unpleasant experience for babies, but hardly a serious condition.

The History of Teething Treatments – Flossed in Time…

Poor teething babies in the past probably weren’t helped by the range of “treatments” used to help with their pain. Here are a few of my personal favourites (seriously don’t try this at home, although if I really have to say that then god help us all):

  • In 117 AD, Soranus of Ephesus suggested using a hare’s brain to ease teething pain (you rub it onto the gums, obviously)
  • In 1545 the English doctor, Thomas Phaire, advised hanging red coral around the child’s neck to prevent teething pain. It also had the handy side effect of helping the child to “resisteth the force of lightening“… So that’s good.
  • In 1575 the French army surgeon Ambroise Pare advised lancing (cutting) the child’s gums, an idea which proved very popular right through to the nineteenth century. In fact, in 1850 Francis Condie even wrote of a case where a dead child was supposedly revived by having his gums lanced. Hmm. Not sure that one would have stood up to a peer review process…


Hmm. I think I’ll stick with Little Man’s teething monkey. Although admittedly, it doesn’t give him the power to resist lightening (as far as I know, I’ll check the box).

Telling The Tooth

Humans aren’t the only animals who have trouble teething. Other primates and mammals in general also have baby teeth (also known as milk teeth) which are then replaced by adult teeth. In fact, elephants and walruses which grow tusks (basically just massively overgrown teeth) apparently also experience pain when their tusks start growing in, and try to rub them on things just as a baby tries to bite when it’s teething. Which sounds adorable.

It’s a strange thought that parents throughout the ages have all had to deal with teething. And given the crazy remedies that have been suggested throughout history, we’ve all wished it was easier to soothe our teething babies. Little Man still has so many teeth left to go, and everyone has their own opinion about which teeth are the worst to cut – I can’t exactly say I’m looking forward to it!

Cabergoline Side-Effects: My Medication May Cause Gambling Addiction
medication

Cabergoline Side-Effects: My Medication May Cause Gambling Addiction

The Sickly Mama1 Comment
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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.

My Pituitary Gland Has A Great Sense Of Timing
medication · Uncategorized

My Pituitary Gland Has A Great Sense Of Timing

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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.