G.I. Joe

Retired, now thyroid and parathyroid warrior!

[G.I. Joe @BloodOnBinary]

@SpSallie @YvetteCooperMP Same here I had to raid my pension pot to fund my surgery after been put on watch and wait for over 2 years and then waited a year before seeing a surgeon and been told another 12/14 months wait before surgery!

[Sallie Powell @SpSallie]

@jamesmurray_ldn July is Parathyroid Awareness Month #PAM2026. The NHS handling of Primary Hyperparathyroidism needs urgent overhaul. Thousands of women are mistreated/misdiagnosed by GPs & endocrinologists, left to suffer bone loss/fractures/kidney stones/cognitive decline/CVD

[Sallie Powell @SpSallie]

@NHSEngland Are you aware that July has been designated Parathyroid Awareness Month internationally for at least eight years? #PAM2026
You should be mortified that the NHS displays treatment misinformation on your website. Maybe July 2026 is the right time to remove/amend it?

[Sallie Powell @SpSallie]

@NHSEnglandLDN @NHSEngland @BBCLondonNews We dont believe you. 18 weeks for an appointment in London? What about the hundreds waiting years for #parathyroid surgery? A lady asked this morning in desperation, 'How do I get this tumour out of my body?' Her letter stated 'a few months' until her next endocrine appointment.

[Sallie Powell @SpSallie]

A mother mid thirties with #hyperparathyroidism, kidney stones & parathyroid adenoma identified on scan was told phpt doesn't affect kidneys, & the waiting list for NHS surgery is 18 months. She told us she fears she'll be dead by then. If she had £7500 she'd get surgery in 4 wks

[Sallie Powell @SpSallie]

Nominations from primary #hyperparathyroid patients for under achievement (neglect, misdiagnosis, gaslighting) by endocrinologists at NHS Trusts throughout the UK 2025. @NHSEngland @wesstreeting Most are hospitals in England. Urgent review/revalidation needed to halt ongoing harm

[Sallie Powell @SpSallie]

@RCGP The GP who flatly refused to test #Magnesium in a patient with low range #calcium and elevated #parathyroid hormone because there's no clinical evidence for the 57p test. Consequences could well cost both the patient & the NHS much more than 57p.

https://t.co/MY08rZnz5K

[Sallie Powell @SpSallie]

@NHSEngland @wesstreeting could you spare a moment to consider that whilst you're both posting about reduced waiting times, in reality, there are patients with primary #hyperparathyroidisn forced into selling personal possessions to pay for private surgery having waited years NHS

[Sallie Powell @SpSallie]

14 years ago, I wrote to six #parathyroid surgeons and @BAETS_UK that the number of patients diagnosed with primary #hyperparathyroidism was the tip of the iceberg. In 2026, are there any UK parathyroid surgeons who think I was mistaken? The NHS bursting at its seams with #PHPT

[Sallie Powell @SpSallie]

@DHSCgovuk When I told a GP in December 2023 that I thought I might have cancer, he laughed and did nothing. An 8cm mass was seen on a mammogram 9 months later. I lost my right breast, hair, nails, and much more. I hope I won't need to give him the chance not to laugh a second or third time

[Sallie Powell @SpSallie]

Endocrinologists across England are now refusing to see patients whose calcium is <2.85. We knew 6 years ago this figure in NG132 was a monstrosity that would lead to gross negligence due to inability for linear thinking and blindly ignoring 1.3.2. @NICEComms continue ignoring us

[Sallie Powell @SpSallie]

@NHSEngland Can you confirm they will all have #parathyroid hormone tested with calcium and vitamin D to rule out primary #hyperparathyroidism before #Abiraterone is prescribed? Because it will increase PTH and CVD risks.
https://t.co/9cKoYm9Oz4

https://t.co/G9vOD7bl44

[G.I. Joe @BloodOnBinary]

@wesstreeting How many people on those waiting lists have paid out of their own pockets to have private surgery because of long wait times.
I did after waiting over 3 years and told to wait another year or more!!!
☝️

[G.I. Joe @BloodOnBinary]

@SpSallie @Ssssiany @wesstreeting I was seen in Nottingham in January 2024 and was told waiting time for surgery was over a year. I was left by my GP on “watch & wait” for over 3 years. I decided to pay privately with the same surgeon and was seen in March…of course the waiting lists are going down!!!

[Carol C @CazJC21]

@Ssssiany @SpSallie @wesstreeting Plus urology/nephrology for kidney stones, cardiology for heart issues, fracture clinics for broken bones... the burden list for #Hyperparathyroidism patients goes on...

[Sallie Powell @SpSallie]

@DHSCgovuk @wesstreeting Thanks to everyone mentioned except the many #endocrinologists who shouldn't be seeing primary #hyperparathyroid patients. They keep them sick whilst gaslighting them. I hope they will find time over the festive period to read https://t.co/EW5O4quAU6 and do much better in 2026.