Diagnosis of Lipoedema

Lipoedema is a relatively new disorder, in terms of diagnosis, in the UK. As a result, awareness and understanding of the condition amongst healthcare professionals and GP’s can be limited. When a woman who is healthy and has no other apparent contributing factors, seeks a diagnosis in the early stages of the disorder, it may be mis-diagnosed due to lack of awareness. In other instances, lipoedema may be mistaken as lymphoedema. 

Lipoedema almost exclusively affects women.

What can you expect at an appointment for a diagnosis of lipoedema?

Your healthcare professional will likely take a full clinical history along with notes of any relevant past medical history. This may include questions such as:

  • When did the symptoms start?
  • Has the condition progressed?
  • How has it progressed?
  • How does it affect you both physically and psychologically?
  • Is there a family history of lipoedema or do female family members have similar symptoms?
  • Does it have an impact on your daily life (work, mobility, hobbies, personal relationships, clothing etc)?

Any other problems that you are experiencing may also be taken into consideration.

Other medical causes of symmetrical swelling in both limbs needs to be ruled out. This may include:

  • Heart failure
  • Chronic venous insufficiency 
  • Dependant (gravitational oedema)
  • Renal/liver dysfunction
  • Hypothyroidism
  • Pregnancy/premenstrual swelling
  • Obesity
  • Drug induced swelling
  • Lymphoedema

Investigations to diagnose lipoedema

A dedicated diagnostic tool is not currently available to help determine a firm diagnosis of lipoedema – and no known urine or blood biomarkers can help either. As a result, it is important that any other underling diseases such as those listed above, are ruled out. 

Your healthcare professional may initiate some of the following blood tests to try to determine any contributing or aggravating conditions. If any are found these can hopefully be addressed and treatment initiated, if necessary:

  • Urea and electrolytes (U&E’s)
  • Full blood count (FBC) 
  • Thyroid function tests (TFT’s)
  • Liver function tests (LFT’s)
  • Plasma proteins
  • Brain natriuretic peptide (BNP) 
  • Glucose

Although hormonal factors are thought to contribute to the development of lipoedema, there are currently no endocrinological tests that have been found to be helpful. 

To determine if lymphoedema is present, lymphoscintigraphy and ultrasound measurements may be carried out. If chronic venous insufficiency is suspected, a venous duplex ultrasound may be done. Other imaging investigations such as Magnetic Resonance Imaging (MRI) and Computed Tomography (CT) scans are not usually required unless uncertainty around the diagnosis remains.

Clinical examination for lipoedema

A physical/clinical examination will likely be done by your healthcare professional. This is another important aspect used to make a diagnosis as characteristic signs of the disorder can then be detected. These may include braceleting at the ankles or wrists, changes to the tissues (for example, shape, size, texture, temperature), bruising, abnormal gait (walking position) and limited mobility. The Stemmer’s sign (the inability to pick up a fold of skin at the base of a finger or toe) will be noted; as will any ‘pitting’ oedema which may indicate a secondary lymphoedema.

Encountering dismissive and/or negative comments on a journey to obtain a lipoedema diagnosis is described by some with lipoedema however, awareness and education are growing.  More healthcare professionals and GP’s are learning more about the disorder and how to help those who are either diagnosed with lipoedema or are suspected of having lipoedema.  

An on-line eLearning module from the Royal College of General Practitioners (RCGP’s) which was facilitated by Lipoedema UK has helped raise awareness and education. It also reinforces the benefits of a good patient and medical partnership to improve management approaches and better outcomes for those with lipoedema. For more information, you can direct your GP to www.elearning.rcgp.org.uk/lipoedema