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"Getting a diagnosis"

About: Dumfries & Galloway Royal Infirmary / Endocrinology General practices in Dumfries and Galloway

(as the patient),

I'm in my 50's and suffering hypercalcemia, been told I have FHH but I get kidney stones regularly, gall stones, hardened arteries, osteoporosis, fatigue depression, memory loss, clubbed nails - all point to calcium imbalance. For the past five to seven years I have been on vit d3, there are three types of vit d the body uses depending on liver-kidney function. I don't know if mine is correct one. Folic acid to correct imbalance but no gene test to confirm FHH, and if FHH what type as some are treatable.

I have researched my symptoms and it clearly explains why FHH is misdiagnosed and why wrong levels of calcium in blood is a long-term killer taking sometimes 25 years to be found, only when patient is administered with some other seemingly unconnected life-threatening condition. My last endocrinologist said I had FHH and would just need my calcium checked regularly, I have had very little blood tests since diagnosis and they were not checking my pth blood calcium. 

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Responses

Response from Alexis Brain, Patient Experience and Safety Manager, Patient Experience, NHS Dumfries and Galloway 3 years ago
Alexis Brain
Patient Experience and Safety Manager, Patient Experience,
NHS Dumfries and Galloway
Submitted on 02/12/2020 at 12:46
Published on Care Opinion at 12:46


Dear longdog,

Thank you for taking the tome to share your story. I am sorry that you do not feel satisfied the care delivered by NHS Dumfries & Galloway. I am unable to comment on the clinical aspects of your post on this forum, however I note from your comments that you feel that you are not being listened to. I would like to be able to change that for you and invite you to reach out to the Patient Experience Team to discuss your case further,and to see how we can help you to obtain the answers that you seek.

I would urge you to contact the Experience team by email at dg.dgpatientexperience@nhs.scot as soon as possible to allow us to be of assistance to you.

Thank you once again for taking the time to share your experience and I hope that you will be in contact directly in the near future.

Kind regards

Alexis

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