The role of an endocrinologist
Generally, people are referred to an endocrinologist by their GP when they are experiencing symptoms of adrenal insufficiency, or sometimes via A&E, if they have been diagnosed as a result of an adrenal crisis.
Endocrinologists are specialist doctors who diagnose and manage disorders of the endocrine system, the network of glands that produce hormones essential for regulating many bodily functions.
In adrenal insufficiency of all types, endocrinologists have a key role in confirming the diagnosis, determining the cause of the condition, prescribing and adjusting hormone replacement therapy and monitoring for signs of over- or under-replacement. Either they or endocrine nurses, in teams with that resource, advise on the prevention and management of adrenal crisis, and provide education on sick-day rules and emergency treatment.
Because adrenal insufficiency is a lifelong and potentially life-threatening condition if inadequately treated, the NICE Guidelines for the Identification and Management of Adrenal Insufficiency recommend that patients receive ongoing reviews from an appropriate specialist team, which would typically be your endocrine team.
There is no exact guidance in the NICE Guidelines as to how frequently you should be reviewed - it states in Section 1.8.3:
Adjust the frequency of ongoing reviews according to clinical and individual needs using a shared decision-making model
It suggests that supporting specialists should offer more frequent reviews in certain circumstances, including around diagnosis and when clinically indicated. We know that some of our members have an annual review, and others haven't seen their endocrinologist for over a year. There is also regional variation on whether you are offered a 'face-to-face' review or a phone call.
Will my endocrinologist be an expert on adrenal insufficiency?
As a matter of professional training and scope of practice, all consultant endocrinologists should be familiar with Addison's disease (primary adrenal insufficiency) and other forms of adrenal insufficiency, including secondary and tertiary adrenal insufficiency. These conditions are core endocrine disorders and fall squarely within the speciality of endocrinology.
However, it is realistic to expect, and we know from experience, that there can be differences in the depth of expertise between endocrinologists, and their expertise and confidence will also likely be influenced by the number of adrenal insufficiency patients that they see regularly.
Some endocrinologists will have a special interest in adrenal disorders or pituitary conditions (including secondary adrenal insufficiency).
Your endocrinologist is part of specialist Secondary Care services (in the NHS), so you will usually need to see them at an acute or teaching hospital, via an outpatient clinic.
Preparing for your review
It is important to be ready for your review as you may have to travel some distance, and you don't have long to ask all the questions you may have. The following may help:
- Keeping a symptom diary if you are not feeling well, so you can spot patterns to report back to your endocrine team. Or you may just want to note down your current top 3 symptoms and how they impact on your life.
- Thinking about what you want to ask before the meeting, so that you get the most out of a short period of time. Our medical summary sheet may be useful here. You can write down the top 3 things that you want to get out of the appointment.
- Don't be afraid to share when things aren't feeling good, or you feel that your medication may not be optimal for you. You know your body best, and your endocrinologist can only help if you share that there is a problem.
- Take someone with you if you can - it helps to have two people listening to the advice you are given, to make sure you remember it, or to prompt you to ask something you might not have thought of.
- Use the Consultation Reference Guide (below) as a prompt before your review, and circle any elements you would like to discuss.
