EB B260

@shaungw I emailed Emily Craig on Monday after one of our members messaged me about a Daily Mail post with the title, 'Women have to fight so much harder to get a diagnosis.' It reported about Julie, who said, 'I saw a GP SIX times about crippling fatigue - so many doctors could have diagnosed my deadly disease earlier.' When I looked up health editors for Daily Mail, I found Emily. She hasn't responded. This is pretty much the email I sent. (I've added in a few consequences of untreated primary hyperparathyroidism). Dear Emily Back in 2014, a journalist wrote my story for the Daily Mail. dailymail.com/health/article… There were a couple of mistakes; it's not a rare disease, but a very common endocrine disease, and I wasn't planning to travel the country with an endocrinologist, but the rest of the story was great. The story reached many people with untreated hyperparathyroidism who contacted me, which prompted me to set up a support group in September 2014 called Hyperparathyroid UK, Action 4 Change. We campaigned for NICE guidelines and I created a website hyperparathyroiduk.com However, my own story wasn't over. It turned out my surgeon missed a second parathyroid adenoma. By 2015, I became extremely unwell again. Endocrinologists in Derby, an endocrinologist in Nottingham, and two surgeons in Nottingham all refused to offer me a neck scan because my calcium wasnt 'high enough'. I had to close the business I'd set up in 2013 due to suffering with excrutiating pseudogout and chronic fatigue (both attributed to primary hyperparathyroidism). I finally got a GP referral to a surgeon in Oxford, Shad Khan, who agreed to a scan in January 2021, which was positive. He removed my second adenoma along with my thyroid, in May 2021. Unfortunately 21 years of primary hyperparathyroidism led to a 6cm calcified mass in my right breast which contained a 3.6cm aggressive HER2+ cancer. I had a mastectomy in 2024, five weeks after the 6 biopsies, and chemotherapy in 2025. My support group has helped thousands of women fight for a diagnosis and surgery, and saved many lives (as stated by members). Unfortunately some have lost their lives due to the consequences of untreated PHPT. I published three books on PHPT and I'm working on my fourth. Misdiagnosis still features in the lives of many members. The NICE guideline included a randomly set figure of 2.85mmol/L as the margin for surgery in their recommendation 1.3.1. We disputed this figure during public consultations as potentially harmful. The guideline evidence paper states there was no evidence for this figure but the committee thought it was reasonable. Many endocrinologists appear to ignore recommendation 1.3.2 which suggests a referral to experienced surgeons regardless of recommendation 1.3.1. 2.85 has been the main focus of my three books. NICE refuse to amend it, despite it directly being the cause of serious harm to many women. Untreated primary hyperparathyroidism can cause crushing fatigue, anxiety, cognitive dysfunction, fractures, kidney stones, gallstones, heart attacks, strokes and sudden cardiac death. It increases risks of some cancers. I would like to ask you to consider a follow up to my 2014 article please, because my support group likely wouldn't have happened had it not been for that 2014 feature, and because of ongoing harm and misdiagnosis based on a figure conjured up by a committee, which we believe needs to be removed from NG132. nice.org.uk/guidance/ng132 Our frustrated members would really appreciate your assistance. I'm certain many would be happy to talk to you. Thank you. Kind regards Sallie Powell So, if Emily isnt interested in either a follow up story, or any other story about primary hyperparathyroidism, particularly the damaging figure 2.85, would you consider taking this up please?

Women >50; You dont matter to the #NHS. They dont care that you worked all your life & supported families. If you have primary #hyperparathyroidism they will gaslight you, & send you away. You'll have to fight to get a diagnosis & treatment. We care, and can guide you. #PAM2026

@Soc_Endo Could you please take urgent overdue steps to ensure your members are brought up to speed with primary #hyperparathyroidism (PHPT) to benefit patients as well as the #NHS. Using the preposterous term '#asymptomatic' (without symptoms) to dismiss or force them to 'Watch & Wait' up to and above 10 years feels with certainty, a violation of human rights. The dreadful suffering we read about year after year, contributed to by endocrinologists who only look for osteoporosis, kidney stones & calcium >2.85 is deplorable. To be dismissed as asymptomatic without those consequences feels very much like disrespect for patient dignity, human life, gender, and good medical practice. Patients are led to believe all clinicians have sworn the hippocratic oath. This article says it is not compulsory. patient.info/doctor/thinkin… A contemporary revision created in 1948 is called the Geneva Pledge. It has been amended over the years upto 2017. wma.net/policies-post/… The Physician’s Pledge AS A MEMBER OF THE MEDICAL PROFESSION: I SOLEMNLY PLEDGE to dedicate my life to the service of humanity; THE HEALTH AND WELL-BEING OF MY PATIENT will be my first consideration; I WILL RESPECT the autonomy and dignity of my patient; I WILL MAINTAIN the utmost respect for human life; I WILL NOT PERMIT considerations of age, disease or disability, creed, ethnic origin, gender, nationality, political affiliation, race, sexual orientation, social standing or any other factor to intervene between my duty and my patient; WILL RESPECT the secrets that are confided in me, even after the patient has died; I WILL PRACTISE my profession with conscience and dignity and in accordance with good medical practice; I WILL FOSTER the honour and noble traditions of the medical profession; I WILL GIVE to my teachers, colleagues, and students the respect and gratitude that is their due; I WILL SHARE my medical knowledge for the benefit of the patient and the advancement of healthcare; I WILL ATTEND TO my own health, well-being, and abilities in order to provide care of the highest standard; I WILL NOT USE my medical knowledge to violate human rights and civil liberties, even under threat; I MAKE THESE PROMISES solemnly, freely, and upon my honour. 14th October 2017 Undoubtedly many of us feel our human rights are violated and this pledge is not upheld. We hear from multiple patients every week who've had to don battle armour to fight endocrinologists for several years to achieve a diagnosis of PHPT, scans, and referrals to parathyroid surgeons, in many cases despite years of hypercalcemia (but not high enough). They tell us they've endured years of bone, joint & muscle pain, bone loss, kidney stones, fractures, cognitive decline, breast cancer, heart attacks, asthenia, insomnia, depression, anxiety, (all attributed to PHPT) yet endocrinologists class them unfathomably as 'asymptomatic' based on calcium levels, and cruelly employ 'Watching & Waiting', which often results in loss of employment, breakdown of families, and drives some patients to consider suicide, or to die from the consequences of untreated primary hyperparathyroidism. I don't expect a response here. I will write to your dedicted professional team endocrinology.org/about-us/w…… but felt my concerns (echoed by thousands of PHPT patients) should be aired publicly, because of the serious nature concerning so many patients. In a recent quick survey of 198/5450 PHPT patients, 73 had a very positive experience which we were happy about, but 75 endured Watch & Wait endocrine gatekeepers, 42 went straight to surgeons to bypass endocrinologists. If only endocrinologists didnt need to be bypassed, and surgeons could focus on operating, rather than adding the role of endocrinologist to their weekly routine, it might reduce surgery waiting times. If only endocrinologists didnt keep very sick PHPT patients on repeated annual review lists, they might reduce the burdon on many other NHS departments.