Care Opinion

My health journey

Posted By Double MM

"My health journey"

About: Ealing Hospital / Endocrinology

(as the patient),

Immersive Reader

In 2018 I got diagnosed with insidious diabetes a condition in the pituitary gland. The word diabetes was a very confusing name  for many people that came across my health journey. 

I did not understand what was going on with me and my health as things got confusing with so many different conditions that occurred in such a short space of time. 

Insipidus diabetes is water diabetes located in the brain which controls hormone levels and it’s in the pituitary gland nothing to do with sugar diabetes. 

Lack of knowledge as it’s a rare condition, everyone kept getting it wrong and even my GP had me listed as diabetes until last year when I actually told them to change my records. 

I told GP that it was nothing to do with sugar diabetes. The surgery was treating me for diabetes from 2018 to 2024 when I insisted they changed my records.  Since then I am finally getting the treatment I should for my condition. 

It’s chronic health condition called Insipidus Diabetes. With so much confusion the name finally got changed.

Insipidus is changing its name:  Arginine Vasopressin Deficiency.

Being a chronic condition I could not see my  consultant, insurance not covered for chronic conditions and it took over two years to see an endocrinologist.

Recently, I had an appointment from Ealing hospital and I saw a consultant there and he was really really good and I just want to say that my whole experience in Ealing hospital for the first time was amazing. I want to thank everybody that helped me and it was really a wonderful moment because I felt heard and that somebody acknowledge what I was saying and helped me with my medication which had not been reviewed  for over 2 years, 

I am truly grateful to the  endocrinologist who saw me recently at Ealing Hospital. I am so sorry I cannot remember endocrinologist ‘s name. 

You listened to my story and you changed my medication and it felt good I was being heard at last !!! Thank you very much for listening to me and giving me the appropriate treatment. 

I look forward to to seeing you again 

Thank you Ealing Hospital for calling me with an appointment. 

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Responses

Response from Patient Experience and Engagement Lead, London North West University Healthcare NHS Trust 4 days ago
London North West University Healthcare NHS Trust

Submitted on 12/03/2025 at 17:06
Published on Care Opinion at 17:06

Immersive Reader

Dear Double MM,

Thank you for sharing your experience.

Your journey with insipidus diabetes, now known as Arginine Vasopressin Deficiency, sounds incredibly challenging. I am glad to hear that you have finally received the correct diagnosis and treatment after years of misunderstanding.

It's wonderful to know that your recent experience at Ealing Hospital was positive and that the endocrinologist there listened to you and adjusted your medication. Feeling heard and receiving the appropriate treatment must have been a huge relief.

Thank you for sharing your story. It is important for others to understand the complexities of rare conditions like yours.

I will make sure to share the feedback with the team so that your gratitude can be relayed back to them and recognised.

Wishing you all the best,

Leanne Fernandes