Most people have no idea what Graves Disease is. Neither did I until I was diagnosed.
I was hoping it was thyroiditis – a temporary inflammation of the thyroid.
Graves Disease is an autoimmune disorder where your immune system attacks your thyroid gland, causing too much thyroid hormone to be produced. You can find out all about it in this video.
What you probably don’t know is that this little butterfly-shaped tissue in your neck controls almost every organ in your body and its processes.
At first, I wondered whether I had lung damage from my Covid-19 experience in April.
I rang the GP and she asked me to come down to the surgery that day. I had to use a walking stick as I was so tired going there that I thought I would faint. I was breathless and tired, sleepy and my heart was pounding.
The GP came out to meet me at the staff entrance in full Covid kit, but she soon relaxed.
“I’m pretty sure you don’t have Covid” she said. “You don’t even have a cough and your sats are fine.”
“I’m so sorry” I said, “I didn’t want to waste your time”.
I had had an ambulance called for me in June when I thought Covid was coming back and was breathless and coughing. I didn’t end up going to hospital to get it checked, but I know now that it was Graves rearing its ugly head.
“Lets just check your pulse. Stand up….sit down. She frowned.
Stand up again. Ok, you can sit down. Sorry can you stand up for me one more time?”
The doctor was still frowning.
“No, there’s definitely something going on. Your heart is racing. When you just stood up, your heart rate jumped to 130, then 105 the next time and 90 the third time.”
“90 is pretty normal isn’t it?”.
“90 isn’t bad but it shot up to 130 when you first stood up, even though you’ve been waiting, what, 15 minutes?”
“Yes.”
“I want you to have a blood test.”
I was put on a beta blocker, propanolol, which slows your heart rate down. If your heart rate is high over a long period of time it can cause an arrhythmia, which can eventually lead to heart failure.
Then I got the call. “It’s highly likely you have Graves Disease“. This is known in Europe as Basedow’s Disease. About 1% of the population have an overactive thyroid, of which about 80-95% of them have this caused by Graves Disease.
I felt exhausted and had dizzy spells. After just a walk I would sleep for an hour or two and yet I would be wide awake at night, sometimes taking until 6am to finally fall asleep. I read that it’s because the disorder overstimulates the nervous system. There was plenty of research about an underactive thyroid, but not much about an overactive thyroid, despite the fact that in rare cases it can kill you. This is known as a thyroid storm.
It took two weeks to get the medication I really needed – Carbimazole. This decreases the elevated thyroid hormones in your blood.
I had to ring the hospital or the GP regularly to chase it. I was told to double my dose of Propanolol. I then started getting even more tired and was mostly in bed, apart from short local walks when I had a brief respite from the jetlag tiredness. Kalms One a Night helped me sleep, and valerian tea.
I got my neck and eyes checked, as Graves causes eye problems in 30% of patients. That was fine as expected.
The other conditions that may lead to hyperthyroidism (an overactive thyroid) are nodules – lumps that affect thyroid function which is mostly seen in older patients.
According to internet research it will take 3-8 weeks for the Carbimazole to work.
I bought a “pre-payment” prescription certificate. This means that instead of paying £115-200 a year I instead pay £108. Those with an underactive thyroid gland get their medication for free, so there is a petition asking for equal treatment rights.
You have two treatment options after your course of Carbimazole is complete, but if you choose one, block and replace, your treatment is free. This is because the additional medication for this, Levothyroxine, is a synthetic hormone replacement for those who have had their thyroid gland removed – it has to be taken or the patient will get ill.
https://petition.parliament.uk/petitions/553013
On the 19th February I will have another blood test and then the level of thyroid hormone in my blood should be down to normal levels. Once I stop taking the Carbimazole I need to wait two years to give blood. I am not sure why it takes so long to be able to donate again.
An aunt has Graves Disease and the endocrinologist (a specialist doctor) told me that it is more likely if you have family history. She developed symptoms after she had her first baby. High levels of thyroid hormone in the blood can pass to the foetus and lead to low birth weight, prematurity and miscarriage.
The gene can apparently be activated by severe stress or trauma, pregnancy or bad illness according to Dr Google.
I am convinced that having Covid in April triggered a gene for Graves Disease. Months later I started getting tired and breathless doing my normal exercise again and I even had mania – abnormally high energy levels. One day I went for a two hour hilly bike ride. I was then awake most of the night as I wasn’t tired. This happens because energy levels initially rise at the onset of hyperthyroidism.
There is a small study of about 200 patients that has linked thyroiditis to Covid, as an infection in the upper respiratory tract (the throat) is close to the thyroid in the neck. You can feel the gland move if you put one hand either side of your neck and swallow.
You don’t have to have the gene to get Graves Disease, it can happen to anyone. It is more common in women and usually develops between the age of 20-40.
If you have a tremor (shaking hands) and you get breathless with activity, or you have any of the other symptoms on this list, ask your GP for a blood test.
If you have an overactive thyroid, you can join the BTF Hyperthyroidism Facebook group for support.
Updated 03.02.2021
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