Lesley Halliday

[Lesley Halliday @Hallidaylesley1]

@DrAmirKhan GP Hyperparathyroidism. Myself and thousands of others struggle for years to get a diagnosis let alone surgery leading to osteoporosis, kidney stones, heart disease and worse. I wondered if you might consider raising awareness of this curable disease

[Julie UK @joolsinbham]

@SpSallie I was discharged with no advice to GP or me, had to ask for blood tests myself, and still have no idea what my PTH was in hospital or after discharge. Just abandoned! If it wasn’t for your group Sallie I’d have been lost.

[Sallie Powell @SpSallie]

A lady got to meet a parathyroid surgeon in South #Wales today after 3 years, who agreed she needs surgery. She asked how long the wait might be, and he replied, 'Don't hold your breath'. We know he is likely under a lot of pressure, but #parathyroid patients in S Wales need help

[S A M M Y Woodhouse @officialsammyuk]

Absolute madness. Who hired this woman?

[Shaun Lintern @ShaunLintern]

Martha's rule rolled out to all acute hospitals in England after hundreds of lives saved: https://t.co/Ipj91H4Mun

[Sallie Powell @SpSallie]

Group discussion today about #calcium level 2.85, & all the clinicians who say people won't have symptoms below this level. Occasionally, we hear from asymptomatic people with calcium <3.00, which astonishes us. But it's definitely not typical.
https://t.co/DCFa6z4B2T

[Sallie Powell @SpSallie]

A lady who suffered symptoms of #hyperparathyroidism for more than ten years, including kidney stones, finally had #parathyroid surgery today after reaching the magic number 3.01 for calcium, (PTH 14.3, vit D 75). Her adenoma measured 15 cm! The #NHS at its 'best' unfortunately.

[Sallie Powell @SpSallie]

Many members wrote letters to NICE Board members about terrible health consequences of doctors following their guideline recommendations. They were ignored. A member said, What is shocking is the fact they had a chance to put this right and didn't take it. Next steps? @NICEComms

[Sallie Powell @SpSallie]

We were asked why so many are refused referrals from primary care with #normocalcemic primary #hyperparathyroidism, given the serious risks of elevated parathyroid hormone (sudden cardiac death included). Only @NICEComms can explain this, but they won't.

[Sallie Powell @SpSallie]

Very disappointing post-op difficulties a lady endured in #Newcastle hospitals (parathyroid surgery) made worse by no wound care advice & given another patients discharge papers. She was told to go back for them. We think they should have been delivered with flowers & apologies

[Sallie Powell @SpSallie]

The lady who had a 15 cm #parathyroid adenoma removed this week told us her symptoms of #hyperparathyroidism and kidney stones began in 2014 in #Redditch. She was dismissed by GP & hospital many times over the years. She moved home. New GP tested Cal/PTH/Vit D for the first time.

[Sallie Powell @SpSallie]

A lady with #calcium 2.88 (tapering off steroids) had a phone call from Endo's secretary to say her calcium isn't high enough to cause her symptoms. Will this #madness ever end? We know the #parathyroid surgeon has long waiting times, but this endocrine gatekeeping is harmful.

[Sallie Powell @SpSallie]

A lady had two #parathyroid adenomas removed 3 weeks ago by a surgeon who operates on #normocalcemic primary #hyperparathyroid patients. NG132 recommends no further investigation if calcium <2.6. Many hospital labs refuse to test PTH if calcium <2.6.
https://t.co/iaeIfNZuft

[Sallie Powell @SpSallie]

Why we advise #PHPT patients to get #Magnesium tested:
1. Low Mg can reduce calcium. #Normocalcemic #PHPT isn't well recognised. PTH is often refused if calcium <2.6.
2. Low Ca & PTH post op can be due to #hypomagnesemia
3. Mg blood test costs NHS 57p.
4.https://t.co/rmXfeOhRog

[Sallie Powell @SpSallie]

NG132 contains information patients need their doctors to read. It's knowing where to find it. They typically only see & quote '2.85' All doctors should read: https://t.co/KEMlZubUu3
Normocalcemic PHPT references are hidden here with other important statements for clinicians

[Sallie Powell @SpSallie]

Hidden behind the link in recommendation 1.1.2 is 'chronic non differentiated symptoms'. PHPT is NOT all about bones and stones.
Recommendation 1.3.2 should be noted and acted upon by all clinicians.

[Sallie Powell @SpSallie]

A lady in Kent with osteopenia, kidney stone, hypercalcemia 2.76-2.95, was discouraged from surgery by ENT surgeon because she likely wouldn't be able to find the 7x3mm adenoma. She should not be doing parathyroid surgery and should have referred to a surgeon who can find it.

[Sallie Powell @SpSallie]

Not sure if today has been deliberate or inadvertent gaslighting patients by doctors but the gaslighting ranged from, 'We can't test your PTH because you were deemed cured of hyperparathyroidism a year ago', to 'hyperparathyroidism doesn't cause brain fog'
https://t.co/j91jSJaIGh

[Sallie Powell @SpSallie]

We heard from a lady whose doctor referred themselves to a significant event group after not testing her calcium. What a good idea. Hyperparathyroid patients would appreciate doctors' learning rather than accepting blame. There's a lot of doctors who need to learn about calcium.

[Sallie Powell @SpSallie]

A new member with calcium 2.9 and PTH >19 told us she had #hypercalcemia in 2023 missed. Her symptoms were attributed to #menopause. This is such a common theme. Of course, if she was a male, her symptoms wouldn't have been misdiagnosed. Maybe calcium would have been seen sooner.