NB: I am not medically trained and this blog does not contain medical advice. If you are concerned about your health, please see your doctor.
About three and a half years ago, I went to see my GP with some alarming symptoms. I was in pain and worried. After some blood tests, my GP told me that he was referring me to Endocrinology and that I might have a condition called Primary Hyperparathyroidism. It wasn’t an emergency, and the initial alarming symptoms diminished, so it took a while for me to have further tests. Some of the tests were repeated and calculations were done. Eventually, it was confirmed that I did, indeed, have Primary Hyperparathyroidism.
The parathyroid glands are, when healthy, about the size of a grain of rice. Most people have four of these glands, which live behind the thyroid, one in each corner, if you like. Their job is to regulate calcium in the body, ensuring that the bones have enough and the blood doesn’t have too much. They secrete something called parathyroid hormone (PTH) into the blood, which controls calcium. When someone has hyperparathyroidism, it is usually because one or more of the glands develops a benign tumour, called an adenoma. It then sends too much PTH into the bloodstream, encouraging the bones to let calcium out into the blood. This means that routine blood tests will show high calcium, and further blood tests will show high PTH. When everything is working properly, calcium and PTH have a ‘seesaw’ relationship. When calcium is high, PTH is low, and vice versa. Primary Hyperparathyroidism can, if left unchecked, cause kidney stones and affect bone density, and is connected to cardiovascular issues. There is no effective medication, but most cases can be cured by surgery to remove the offending ademoma/s.
For three years, I have been living with the knowledge that this disease has been affecting my health. I probably had it for some time prior to that, without knowing. I have struggled with fatigue, palpitations and various aches and pains. Terrible ‘brain fog.’ Earlier this year, I was told that I have a small kidney stone. I had nuclear and ultrasound scans, but the only thing that showed up on these scans was a thyroid nodule. It is quite common for nothing to be seen on scans, as parathyroid adenomas are notoriously elusive. The local surgeon was reluctant to operate, even after the kidney stone was found.
Long story short, I arranged for surgery myself, with a very experienced surgeon, in Oxfordshire. I planned it for the beginning of the summer holidays this year, as I knew that the operation might affect my voice, and of course I do need my voice for work.
I wish I could say that everything was straightforward, but my operation turned out to be ‘very complicated,’ according to my surgeon. He had to remove part of my thyroid, and we had to wait for tests to see if it contained a parathyroid adenoma. My blood levels have improved, but are not yet optimum. Luckily, the chunk of thyroid did contain an adenoma and there was nothing sinister found in the thyroid. The thyroid nodule was large, and it was only after the operation that I realised it had been affecting my swallowing.
It’s taken me weeks and weeks to recover, and my neck is still uncomfortable, especially after a lot of talking. I am gradually easing back into work, and it is ok. The scar at the front of my throat is pretty small, and should eventually become invisible.
Do I feel better? Well, my body is still recovering and I get tired very easily. However, the debilitating brain fog I used to experience seems to have gone. I haven’t had any palpitations, which is wonderful. I will have more blood tests in October and January, and if things don’t look great, there might be a very clever scan to look for any other parathyroids adenomas.
I decided to tell this story because I know I am not alone. Many people, especially in later life, are living with invisible chronic conditions. It’s not fun to have to limit your life: I haven’t been on holiday since 2019, partly because I just haven’t had the energy. Often, chronically unwell people ‘look well.’ We work, go to the supermarket and look after our families, but sometimes we don’t have energy for more than that. Being self-employed, I don’t get paid time off for medical appointments, so most of my ‘days out’ have been scans and hospital appointments of various kinds. I am looking forward to doing more, going to more places, and expanding my life again.
