What can shared decision-making look like from the patient’s perspective? A Something done with the aim of improving health or relieving suffering. For example, medicines, surgery, psychological and physical therapies, diet and exercise changes. that is the best medical option may not be the best for the person’s life. In this guest blog, Rosalind talks about the treatment choices she faced when her Graves Disease symptoms returned and how she worked out what is best for her.
Page last updated 23 January 2019, page last reviewed 17 August 2022. Please note that Rosalind’s story reflects the information that was available to her at the time.
How embarrassing. I arrived home from my GP appointment and fell into my husband’s arms, sobbing with relief that I wasn’t going to die, and looked up to see our cheery hairdresser, mid-cut on my son’s hair, mouth open, scissors aloft and forgetting all about chirruping about her holiday. I can laugh now as I look back on the forty-something me; wife, mother, daughter, primary school teacher, singing group conductor, about to embark on two new paths whilst keeping all of these plates spinning. We were about to launch a new family business in the week that I also became a patient, diagnosed with Graves Disease.
Now I had an explanation for the uncontrollable trembling of my hands that had made my parents fear I might have Parkinson’s Disease; for my rapid speech which was apparently like a music track on fast forward; for my heart keeping me awake at night with its pounding and irregular The speed or frequency of occurrence of an event, usually expressed with respect to time. For instance, a mortality rate might be the number of deaths per year, per 100,000 people. and levels of anxiety that soared as I felt my body spinning out of control.
My GP was calm and reassuring. She was sure I had Graves Disease, an overactive thyroid. I needed time and medication to bring the symptoms under control. I was going to be all right. And four years later, I am all right. But the road to recovery and moving on is neither straight nor easy.
My symptoms came back
Life returned to normal thanks to treatment with propranolol (a beta blocker, to regulate my heart rate) and carbimazole, an anti-thyroid drug (ATD). I came off the drugs after 18 months and felt confident I would be one of the lucky ones (about 50% of people with Graves Disease) whose symptoms disappeared forever. Six months later, my symptoms were back.
Now I had to be put under the care of an endocrine specialist, who told me that I wouldn’t be able to take ATDs forever. The likelihood is that my symptoms won’t resolve permanently without treatment to destroy all or part of my thyroid gland. This can be done by surgery or treatment with radioiodine (RI).
Faced with a choice of Graves Disease treatments, here’s what I wanted to know:
- What do the treatments entail?
- What are the likely benefits?
- What will the recovery time be?
- Are there any possible harms?
- What is the likely Outcomes are measures of health (for example quality of life, pain, blood sugar levels) that can be used to assess the effectiveness and safety of a treatment or other intervention (for example a drug, surgery, or exercise). In research, the outcomes considered most important are ‘primary outcomes’ and those considered less important are ‘secondary outcomes’.?
As I started to investigate, it soon became clear that I also needed to ask another question that only I could answer:
- what are my priorities?
I didn’t know the phrase at the time, but these things are essential for ‘shared decision making’; conversations between clinicians and patients to establish what might be the best medical treatment and what might fit best for that person, what feels right for them and works in the context of their life.
I was particularly bothered about the potential for tiredness and weight gain. I worried about the need to take thyroxine for life as a result of treatment; do we know whether that’s safe long-term? Then there were worries about the impact of each treatment on my everyday life. There was so much I needed to know before I felt I could make a good decision.
Looking for answers about Graves Disease
As I know Sarah (who edits Evidently Cochrane), I asked her what evidence is available to help answer my questions. Together, we looked at the Cochrane Library for reviews on Graves Disease treatment. At the time of searching, here’s what we found:
- A Cochrane Review on ATDs for Graves Disease found some (not very good) evidence that the best length of treatment is 12 to 18 months and that one type of drug regime seems to have fewer side effects than another
- A Cochrane Review on thyroid surgery, comparing total with partial removal of the thyroid, under way*
- A Cochrane Review comparing radioiodine with ATDs is also in preparation*
So, at the time of searching, there were two reviews coming that could really help someone making this choice. If they find that there isn’t reliable evidence about the treatments, that’s important to know too. They weren’t ready in time for me, but the review on radioiodine had useful background information from other research and this, along with information we found from another systematic review on treatments for Graves Disease and from the American Thyroid Association Guidelines, helped me work out what I wanted to ask my doctor.
Helpful conversations with doctors
Over the following weeks, I had separate consultations with senior doctors about RI treatment, surgery and continuing drug therapy. I felt that all three meetings were very positive and the doctors, though surprised that I came to them armed with information and questions, were very open to discussion, rather than dictating what was going to happen to me.
Radioiodine (RI) treatment for Graves Disease: is it right for me?
I’d learned from what I’d read that RI is considered to be safe, easy to administer, effective and cheap. ‘Success’ is the destruction of the thyroid gland (usually 2-3 months after having RI) followed by a daily dose of thyroxine.
My son, who’d been learning about radioactive isotopes at school, was very anxious about the increased A way of expressing the chance of an event taking place, expressed as the number of events divided by the total number of observations or people. It can be stated as ‘the chance of falling were one in four’ (1/4 = 25%). This measure is good no matter the incidence of events i.e. common or infrequent. of cancer and this had a marked effect on me in the days leading up to the consultation. The consultant explained that there is a slightly higher risk of gastric cancer, although the Data is the information collected through research. is very weak and that treatment for Graves may result in more cancers being discovered very early. So I had to balance a small risk with a high degree of anxiety that, should I ever get cancer, both my son and I would blame it on the RI treatment. The doctor said she had met other patients like me; they remained anxious long after their RI treatment about the increased risk of cancer.
The picture became more complicated when I read the leaflet outlining ‘Precautions to be observed after your Iodine treatment for Thyrotoxicosis’. This included a restriction on the time spent in close proximity (less than one metre) with adults to 15 minutes a day for 11 days and with children and pregnant women for up to three weeks. The practical implications of this are mind-boggling. It would make my work impossible and I am an extremely social creature who ‘tears up’ at the thought of being unable to hug my husband or children for a day, let alone a couple of weeks. Where would I go? Other friends have told me they would relish the time alone and that I should write my first novel or maybe I should just take school reports to write…
The doctor pointed out that treatment failure with RI is 10% in our area. To me this is quite significant – one in every 10 people! I always think that I am going to be the one that the statistics talk about! Why put myself through the procedure when I have a one in 10 chance of having to then have a further course of RI or surgery to remove the mangled thyroid? Perhaps surgery would be a better option.
Would surgery be right for me?
To choose to have surgery is not a decision to be taken lightly by anyone. For me, my voice is massively important. As a primary school teacher, a singing teacher and a conductor, I use it every day over and above ‘ordinary’ communication. Last winter I had my first ever bout of laryngitis, which confirmed this. I could not speak or sing, therefore I could not work. My major worry was the risk of damage to the recurrent laryngeal nerve, which is close to the thyroid. How real was the risk of losing my voice or of it being different after surgery? I was made even more worried about this when I discovered a colleague had been left without a voice for six months after thyroid surgery. A bad anaesthetic experience in the past had left me afraid of a repeat. Then there were practical concerns about how and when I would fit surgery and recovery into my life!
The surgeon I was sent to is very good at his job. I know because I accessed his performance data online. I had a good conversation with him in which he acknowledged how important my voice is to me and explained that he would be able to monitor the nerves during the operation, to make damaging them less likely.* When I said that the choices for treating my GD make me want to hide under a pillow and wake up with it all having gone away, he said that surgery could be my best option, as that is what the procedure enables the patient to do. As with RI treatment, I would need to take thyroxine daily for life, but he told me there are no known long-term harms associated with this.
Where have I got to now?
Having information to call upon has enabled me to enter into good discussions with my doctors about the evidence, practicalities and any questions and concerns I have.
I am now in the 16th month of my second course of ATD treatment. I have continued to put on weight. My consultant has advised me that only 10% of patients will have a thyroid that has ‘burned itself out’ following a second course but that is my current choice (and hope) for the future. She has also pointed out that being overweight can lead to an increased risk of cancer. Ouch. Painful to hear, but true.
I can honestly say that neither RI or surgery have any appeal whatsoever and if I can avoid them, I certainly will. But if Graves recurs again, for a third time, I feel that I am armed with all the evidence I need and therefore in a good position to make a decision.
*Since this blog was published, Cochrane Reviews are systematic reviews. In systematic reviews we search for and summarize studies that answer a specific research question (e.g. is paracetamol effective and safe for treating back pain?). The studies are identified, assessed, and summarized by using a systematic and predefined approach. They inform recommendations for healthcare and research. on thyroid surgery for Graves’ disease, intraoperative neuromonitoring versus visual nerve identification during thyroid surgery and RI versus ATDs have been published.
In the interests of privacy, Rosalind wishes to remain anonymous.
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Sarah Chapman has nothing to disclose.