Top Tweets for #Hyperparathyroid
100 out of 1024 primary #hyperparathyroid patients showed no clear symptoms and an incidental finding of #hypercalcemia which led to a diagnosis of primary hyperparathyroidism. Less than 10%. Why do doctors still call phpt an asymptomatic disease? #PAM2026
July is designated #Parathyroid Awareness Month #PAM2026. All the doctors who refuse to refer #hyperparathyroid patients to parathyroid surgeons unless calcium exceeds 2.85, in some cases 3.00; so they remain untreated. This is on you:
The endocrinologist enforced his #hyperparathyroid patient to watch & wait (wait & see) for calcium to exceed 3.00mmol/L despite a #parathyroid adenoma measuring 30mm × 18mm. @Soc_Endo @NHSuk @NHSEngland @NHSsafety @jamesmurray_ldn Why are endocrinologists allowed to cause harm?
To every single clinician who tells #hyperparathyroid patients that their #calcium isnt high enough to be causing symptoms & that surgeons won't operate until calcium exceeds 2.8/2.85+, you're all wrong, ignorant, gaslighting, causing harm. Please stop. This lady had calcium 2.6.
It may seem like an NHS #hyperparathyroid conspiracy but is more likely constitutional ignorance borne out of blind stupidity. 'We can save money by not testing vitamin D or parathyroid hormone,' they say. All NHS clinicians need to read this study 2007:
https://t.co/H5m0YOBILs
The endocrinologist who told her primary #hyperparathyroid patient, 'You should feel lucky you don't have cancer'.
Oh, we're all so lucky...
A lady wrote that my message has always been, 'I believe you, keep pushing, here's what to do next'
The hardest part for many #hyperparathyroid patients is when their clinicians say,
'I dont believe you.
You can't have symptoms with calcium <2.85'
NG132 caused this 2.85 scenario
A lady thanked me for changing her life. Another said I saved her life. I've prepared a presentation to try to teach clinicians what I've leaned over 12 years so their #hyperparathyroid patients can thank them for changing their lives. That's why they practice medicine isnt it?
Information for the public: https://t.co/IbfagNyU16 trivialises the suffering of #hyperparathyroid patients, listing symptoms as, 'feeling unusually thirsty, needing to urinate a lot & becoming constipated.' NG132 is often described as not fit for purpose, misleading, & harmful.
27th April: A lousy day for UK #hyperparathyroid patients. Astonishing medical gaslighting, neglect & ignorance. A lady waited 20 hours in #Portsmouth A&E before being admitted with calcium 3.2. 40 new UK PHPT members in 8 days! When you think the NHS can't get any worse, it does
We're hearing more NHS Trusts are doubling the top of their #PTH ranges. A move to hold back the hoards of #hyperparathyroid patients getting diagnosed? To be clear, PTH above 'mid range' with high normal/high calcium still indicates PHPT.
#Hyperparathyroid UK for 11.7 years has answered thousands of questions, offered support, advice, guidance, leaflets, & a website to patients to prepare them for their ten minute consultations. We voluntarily relieve a huge burden from doctors. I'm not sure they appreciate that.
A recurring fail throughout the NHS for thousands of primary #hyperparathyroid patients is that doctors defer curative surgery; #parathyroidectomy until after patients' lives are ruined rather than before. Red flags are missed repeatedly, causing patient harm, costing £billions
If only all #hyperparathyroid patients could persuade their doctors to test #magnesium before their #parathyroid surgery. This cheap test could save patients from #hypomagnesemia & inevitable #hypocalcemia after surgery. A lady today with calcium 2.11, Mg 0.73; a classic example
Nearly 18 months on & not much change. Bilateral exploration is the gold standard. Nobody wants to have a failed surgery based on inexperienced surgeons. Scan guided surgeons are still failing too many #hyperparathyroid patients.
Oh, another one...
Private or NHS, these endos are causing harm to #hyperparathyroid patients right across the UK. Bypass them for the good of your health.
@DrSteveTaylor @NHSEngland @wesstreeting #Endocrinologists are, & always have been, a waste of space, & harmful for #hyperparathyroid patients. I've been advising patients to try to bypass them for 12 years. The NHS should scrap them & give that funding to GPs. Here's what doctors need to know, then refer to surgeons.
Someone asked who wrote this utter tripe on NHS website. That would be Liz Glenister former CEO of @ParathyroidUK
Continuing misinformation that #hyperparathyroid patients have been been battling against for over a decade. The truth about PHPT is here: https://t.co/PH18Czsr2M
Another confused patient, another dismissive #endocrinologist refused to even see the #hyperparathyroid patient despite an increase in #parathyroid hormone. For 12 years we've seen that endocrinologists are often a danger to #PHPT patients. GPs need to know to bypass them. @rcgp
@bmj_latest @now_its_nora This is entirely true for #Hyperparathyroid patients who are already at risk. The postcode lottery of finding an endocrinologist who understands #PHPT already exists. Some will escape by self funding, which is likely the incentive behind this new rule. Those who can't will perish
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