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

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…