Beryl Smith

[Kim Banting @KimBanting17]

@SpSallie @TopDoctors Well I think this is the most worrying thing I’ve read for a while from a Doctor. No wonder so many patients are getting fobbed off truly shocking.

[Sarah Holford @SarahKHolford]

@SpSallie @TopDoctors Honestly I feel like screaming sometimes when I see these platitudes… 🙄🙄🙄 and you know if any one of these docs writing the article had it, they’d be straight to the operating theatre. Snip snip, out it would come.

[Sallie Powell @SpSallie]

When @TopDoctors write an article during Parathyroid Awareness Month #PAM2026 suggesting mild cases of primary hyperparathyroidism can be managed with lifestyle changes!
https://t.co/rpG5Gwx4M1

[Sallie Powell @SpSallie]

The lady in #Cheshire with Adj calcium 2.8 & a kidney stone, whose GP declined a referral to a #parathyroid surgeon but got advice from a local #diabetician. His advice below. We hope he's close to retirement and that the GP sees sense. #PAM2026

[Sallie Powell @SpSallie]

A lady had Percutaneous Nephrolithotomy (pcnl) which cleared 80% of her kidney stones. She has a stent. Remaining stones to be removed in 8 weeks. She was relieved the nephrostomy bag was removed, but frustrated her doctors missed hypercalcemia for 7 years. #PHPT #PAM2026

[Sallie Powell @SpSallie]

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

[Sallie Powell @SpSallie]

'Your bloods are your diagnosis' they say, for primary #hyperparathyroidism. Yet the NHS in many areas refuse to look at the full biochemical picture, testing calcium alone (because it's cheap), leading to long diagnosis delays. These NHS Trusts refuse EDTA to test PTH: #PAM2026

[Sallie Powell @SpSallie]

#NHS: Doctors who ignore #hypercalcemia & #hypomagnesemia, ration Vit D/PTH tests to save £s, accuse patients of inventing symptoms, force them to wait for inevitable osteoporosis/Kidney stones, push PPIs, bisphosphonates & statins. A #Parathyroidectomy is the answer. #PAM2026

[American Association of Endocrine Surgeons @TheAAES]

You Don’t Need to “Watch and Wait” Forever

Tired of watching your high calcium levels and hoping it gets better?

Parathyroid surgery is the only cure for primary hyperparathyroidism—and it can be life-changing. AAES surgeon finder can help. https://t.co/ccRoXKYmIS

#PAM2026

[Sallie Powell @SpSallie]

@RoyalOsteoSoc @drcarolinej @GregoryStafford They deserve to know first, if osteoporosis (accompanied by other symptoms I.e chronic fatigue, memory loss, muscle weakness) is caused by primary #hyperparathyroidism, to progress towards #parathyroidectomy to reverse bone loss & other symptoms. https://t.co/PH18Czsr2M #PAM2026

[Sallie Powell @SpSallie]

@rcgp A negative feedback loop needs to be in the forefront of all clinical minds when looking at calcium & PTH levels. It's the bare basics that all doctors should know. @rcgp If you share one fact of hyperparathyroidism with your members, it should be that. #PAM2026

[Sallie Powell @SpSallie]

A current survey: #endocrinology patient experience #Hyperparathyroidism Results so far 164;
62: Very positive.
61: Endured Watch & Wait gatekeepers.
35: Bypassed endos, straight to surgeons.
6: Refused appointments with calcium <2.85
Watch & Wait lasts years & destroys lives

[Sallie Powell @SpSallie]

When a clinician says 'calcium & PTH normal, no further action', but the patient sees a non suppressed relationship and a prolonged battle ahead as their health deteriorates. If only clinicians could picture a see-saw/kettle, and know #PHPT is NOT all about the levels #PAM2026

[Sallie Powell @SpSallie]

A lady met a #parathyroid surgeon today, who will operate within 6 months. He said it's terrible that it's 3 years since referral to endo, 2 years since diagnosis and in all that time telephone appointments only, she's not seen anyone face to face. We agree. @Soc_Endo #PAM2026

[Sallie Powell @SpSallie]

A young doctor let slip to a patient that when studying #Hyperparathyroidism, they're told it's the 'complaining condition.'
Should be 'ignored systemic condition that affects all body parts serviced by blood', but ignorant doctors think it only affects bones & kidneys. #PAM2026

[Sallie Powell @SpSallie]

@rcgp #hyperparathyroid patients are suffering. We've tried tirelessly to approach you asking your GPs to recognise a non suppressive relationship between calcium & PTH. We know GPs aren't endocrine experts, many endocrinologists aren't either. These results are #PHPT #PAM2026

[Sallie Powell @SpSallie]

@andyburnham Great thanks. That's a loaf of bread for 40 weeks a year. Could you somehow get @YvetteCooperMP to investigate the endocrinologists forcing women to give up work by way of misdiagnosing #hyperparathyroidism whilst costing the NHS billions treating the consequences, not the cure?

[Sallie Powell @SpSallie]

@BAETS_UK if a patient is faced with a 1 year wait just to meet the surgeon, then another 1 year wait for surgery, there must be a more efficient process to get patients seen in order to get on that surgical waiting list? One such patient is paying to go to France for surgery...

[Jill Bell @Happydaze47]

@SpSallie @YvetteCooperMP @YvetteCooperMP I agree. Please do something. Hundreds of us scraping together loans, selling cars, borrowing from relatives just so we can see an informed surgeon. This vile disease is killing us.

[Sallie Powell @SpSallie]

@YvetteCooperMP Please do something amazing to benefit thousands of suffering #hyperparathyroid women; sack all #endocrinologists refusing to see patients (which is of course their job) with calcium below 2.85, & get this figure removed from #NG132 . Lives are ruined by 2.85 I.e: