What next? Finding a diagnosis

If you have consulted our Talking Red symptom checker, or you otherwise think that you might have a bleeding disorder, it might be helpful to know the next steps to getting a diagnosis. Here, one of our Trustees, Dr Kate Khair, a bleeding disorders specialist and chair of our Women’s Working Group, explains more. 

“Diagnosing bleeding disorders is complex, particularly if you have no known family history,” says Kate. 

“Diagnosis is further complicated in women due to other causes of bleeding (usually heavy menstrual bleeding), changes in blood clotting levels during menstrual cycles, and a lack of awareness of women’s bleeding in non-specialist health care professionals.

“Your GP may undertake some less specialised blood tests which may, or may not, be able to detect an issue with the way your blood clots. They should refer you for specialist investigations which may be with a general haematologist (blood doctor) or with one who specialises in bleeding disorders – this is likely to be in a Haemophilia Centre.  

“The Haemophilia Centre (or the Haemostasis and Thrombosis centre) looks after people who have issues with the way their blood clots, not just those with haemophilia. When you are there, you are likely to meet doctors and nurses who are specialised in bleeding disorders; they will ask you lots of questions about your bleeding, how it affects your quality of life as well as any bleeding within your family. This will include doing a family tree to work out if anyone else should be tested. 

“You may have to attend several times to have blood tests repeated as many levels can be affected by stress, menstrual cycle and any medicines you may be taking. Although this can be frustrating it is nothing to worry about and you can be sure that full investigations are being done to find out what is causing your bleeding. Once you have a diagnosis other family members can be offered testing (it’s easier for them to get a diagnosis as the haemophilia team know what condition they are looking for).

“If you have any concerns talk to the nurses – they are easiest to get hold of in between visits. You can also of course contact us at the Haemophilia Society on [email protected] or telephone 020 7939 0780. We are not able to provide medical advice, but we can point you to lots of helpful information.”

Please remember that if you are diagnosed with a bleeding disorder, it might at first seem overwhelming, but I want to reassure you that with ever better treatments and care available, people with bleeding disorders usually manage their conditions very well and can get on with living and enjoying their lives.  

If you are diagnosed with a bleeding disorder, at the HS we have a wide range of leaflets and resources to help you better understand your condition; you might also find ‘How Bleeding Disorders Affect Women’ a useful place to start. We also organise a range of member events each year which provide information and support, where you can share your experiences with other people in similar situations. You can also reach out to our member community through our Facebook and Instagram pages. You will hear so much positivity and encouragement about living life with a bleeding disorder, and it can help people feel less isolated.