What even is hyperparathyroidism, anyway?

Well, it’s a great question, but we’ll get to that…

I know it’s been a while since I last blogged, and it would be a lie to say that I didn’t have anything to blog about – believe me I have had plenty! But, the past two years have been weird, I think we can all agree, so there’s no point rolling out those old ‘the new normal’ clichés here.

Managing arthritis during a pandemic

It may not surprise you to hear that I didn’t have a face-to-face medical appointment for a long time – in fact, it was between February 2020 and May 2021, which is probably the longest in my life I have ever gone without actually going into a hospital. I also didn’t have any sort of rheumatology appointment between December 2019 and October 2020, and I noticed towards the end of that year that my hands were getting a bit stiff in the morning and I was feeling quite fatigued. I discussed it over the telephone with my rheumatology nurse in November 2020 and we both agreed it wasn’t too surprising given the government had been telling me not to go outside for the past 8 months (!) and I’d not really been able to exercise very much.

As we got into the early part of 2021, I was still having these problems so rheumatology made me an appointment to go in, for a blood test but also in case I needed a steroid injection. I saw a locum rheumatologist who thought it could be caused by my body developing antibodies to my medication, but requested a full blood count (FBC) blood test just in case.

When the FBC results came back, the doctor called me because it showed elevated levels of calcium. I had been taking vitamin D (on account of not going outside for over a year!) so we thought it could be to do with this, so I stopped the vitamin D and had the FBC repeated two weeks later. This still showed high levels of calcium, so I was then sent for a blood test to check my levels of vitamin D and a hormone called parathyroid hormone (PTH). When this test result came back, it showed that my PTH levels were really high, and my rheumatologist decided to refer me to endocrinology as he thought I could have a condition called primary hyperparathyroidism (PHPT). I was eventually diagnosed with this condition in August 2021.

Other than a mouthful to say, what is hyperparathyroidism?

If you want to get the proper, medical explanation of what hyperparathyroidism is, you should definitely look at the NHS webpage or the Parathyroid UK page on it. But, allow me to give you a brief overview.

In the body, there are four parathyroid glands which are located very close to the thyroid gland in the neck. Other than the similar names, they don’t really have much to do with each other, and the role of the parathyroid glands is to monitor the calcium levels in your body. One or more of these parathyroid glands can become overactive (known as hyperparathyroidism) and produce too much parathyroid hormone (PTH), which then causes too much calcium in your blood.

Given most of my life has been spent trying to ensure I had enough calcium to keep my bones and joints healthy, it was a surprise for me to learn that I now had too much. Calcium seems like one of those things that you should have a lot of, and having too much can only be a positive thing – but actually, having too much calcium can be risky. It can cause kidney stones when the excess calcium builds up in your kidneys and isn’t flushed out of the body. It can also cause osteoporosis, which is a condition where the bones become weaker and fracture more easily. And, I know first-hand that it makes you feel very thirsty all the time, you need to go for a pee A LOT, and you feel absolutely shattered.

A lot of weird tests and scans

Following my blood test last June that showed high levels of PTH and calcium, and before my first appointment with the endocrinology team, I had to go for a lot of strange tests.

The first of these was a 24-hour urine sample.

This involved collecting all my pee over a 24-hour period in the above bottle. For me, this sadly meant squatting over a jug and pouring it into the bottle. I very proudly carried my sample into hospital the following day, in a bag the hospital provided for my dignity. What I didn’t realise is that the bag was only blank on one side and the other side was emblazoned with the words ’24 HOUR URINE SAMPLE’.

Once I had done the sample, had some blood tests and been for an ultrasound of my kidneys, I went to my first endocrinology appointment, where I was diagnosed and sent for more tests! These included more blood tests, an ultrasound of my neck to measure where all my parathyroid glands were – as well as other important things, such as my carotid arteries and voice box – and some genetic tests, as sometimes PHPT can be linked to a gene which causes problems with the parathyroids and other organs, including cancer. But fortunately for me (and my brother!) I didn’t have that gene, though they don’t know what has caused the PHPT.

I also had to attend a Fracture Risk Assessment, or FRAX, to see if I had started to develop osteoporosis due to the high levels of calcium. Luckily, I haven’t, but I have got some signs of osteopenia which is where the bones start to lose some of their density, but the risk of a low impact fracture is still very low. I have been taking vitamin D every day as this helps your bones absorb calcium better.

I also had to go for a CT scan and something called a sestamibi or ‘mibi’ scan. Before you have a mibi scan, you’re injected with a radioisotope (a type of ‘nuclear medicine’ which is a bit scary sounding!) which then helps show up your parathyroid glands on a scan. You get a metallic taste in your mouth as you have the injection, and you have to use a special toilet at the hospital (for people who are radioactive!) once you have had it, and also avoid being close to young children or pregnant women for a few hours afterwards. The scanner moves around your head and neck for about 20 – 45 minutes, depending on the type of scan you’re having, and it gets really close to your face so can feel a bit claustrophobic.

What’s next?

Once I had all of my many, many scans and tests, I was put on the waiting list for surgery and luckily for me a spot has come up on Thursday 19 May. In someone of my age, the best thing they can do to control the PTH and calcium levels and bring them back to normal is to remove the affected parathyroid glands.

Based on all my tests, they’ve been able to work out that it’s probably just one of my parathyroid glands on the right side that has become overactive, so I’ll be having what is known as a unilateral neck exploration and parathyroidectomy to remove the affected gland/s.

Following this, my PTH and calcium levels should return to normal, but it can sometimes take a while, particularly if my other parathyroid glands have become dormant to compensate for the excess of PTH being produced. There is also a chance that my vocal cords could be damaged by the surgery, but if this does happen it will hopefully only be temporary.

The recovery takes about 2 or 3 weeks, and I do have to do social distancing for a week beforehand and take lateral flow tests in the three days leading up to my surgery. But fingers crossed everything will be fine and I’ll be able to have my surgery as planned.