Donna Beech

Para-Warrior and is a keen photographer and loves to use her imagination

[Donna Beech @DonnaLBeech]

Why is it that anyone with normal calcium and raised parathyroid hormone is still overlooked as not having primary hyperparathyroidism. It's not just people with high calcium who have this disease. Open up your eyes to other possibilities

[Sallie Powell @SpSallie]

All this heightened awareness of #menopause, but what if it's not actually menopause but something much worse that will be brushed off and misdiagnosed as menopause?

Primary #hyperparathyroidism. https://t.co/ztVCxscchr

[Sallie Powell @SpSallie]

What to do when a patient in hospital with excessively high calcium, taking huge doses of cinacalcet which has caused hypomagnesemia. She hasn't been able to get anyone's attention on the ward for over 20 hours? Theyre ignoring her. She needs IV magnesium. How difficult is that?

[Sallie Powell @SpSallie]

A lady waited 18 months for a first endocrinology appointment. She was told brain fog, fatigue, bone pain, nausea, etc. are not symptoms of primary #hyperparathyroidism. We despair of harmful #endocrine #gaslighting enabled by the #NHS. They can't be trusted by PHPT patients.

[Sallie Powell @SpSallie]

The endocrinologist who discharged a patient with calcium 2.92, PTH 22.5, & osteopenia, back into the care of her GP saying she just needs to cut dairy from her diet. Consequently, her symptoms and PTH have increased. @wesstreeting yet another harmful #endocrinologist. How & why?

[Sallie Powell @SpSallie]

A lady was admitted overnight at A&E due to high #calcium levels. Her GP wants to refer her to a neurologist??
@rcgp are you as concerned as we are about the lack of anatomy knowledge possessed by your doctors?

[Sallie Powell @SpSallie]

@BuildingRBH I've been talking to an inpatient of yours for 3 days who's got hypercalcemia >3.00 and hypomagnesemia. 3 days of your staff all blaming each other for not being able to organise IV magnesium. It's like painfully watching a train crash about to happen in slow motion

[Sallie Powell @SpSallie]

@BAETS_UK our members are asking who the travelling parathyroid surgeon is who can offer on site training? Have they been appointed yet? Could Plymouth be one of the first visits? We have quite a list if it would be helpful to you? Will they train in bilateral explorations? Ty

[Sallie Powell @SpSallie]

It's only Tuesday yet abysmal feedback about PHPT & #endocrinologists is piling high. We're also hearing from patients faced with very long queues for surgery (except #Croydon) on the #NHS for surgeons who can operate privately in 3 weeks. @wesstreeting surely the NHS should pay?

[Sallie Powell @SpSallie]

@DHSCgovuk Still happening on greater scales. Patients with primary #hyperparathyroidism are asking how so many doctors can remain so utterly clueless. The majority of endocrinologists need to be reclassed as diabeticians urgently & STOP seeing & misdiagnosing PHPT patients.

[Sallie Powell @SpSallie]

1/3: When clinicians refuse to test magnesium in primary #hyperparathyroid patients because they have no justification for the NHS to spend 57p on the blood test.
https://t.co/xh1KBxZR1S

[Donna Beech @DonnaLBeech]

@SpSallie That's because the group and yourself have changed lives and given hope. Most of all, listened to the members and that's what means more to them.

[Donna Beech @DonnaLBeech]

@SpSallie I'm so glad I've had my op. IF that was my endocrinologist, i'd want to run a mile. I met a few Manchester ones and they do not have a clue.

[Sallie Powell @SpSallie]

A lady met one of her #parathyroid surgeons today who was receptive and appreciated her questions. Here they are. #Hyperparathyroid patients will be reassured knowing the answers to them before surgery.

[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

[Donna Beech @DonnaLBeech]

Don't use celebrities or well-known people to front any campaign for bone health. Pour that money into treating primary hyperparathyroidism patients instead. The faces that know what it's like to have bone health issues and the effects. Money well spent if you did.

[Donna Beech @DonnaLBeech]

Are hyperparathyroid patients left to die or at least have a mental health breakdown? They do not ask for much except to be heard and treated with surgery. Yet they are treated unhumanly by the medical field who meant to help them. Don't ignore them.

[Donna Beech @DonnaLBeech]

@SpSallie What is lady meant to be waiting for? 10 years have passed, and damage is already present. Think it's time she was treated and let her be happy with a cure.

[Sallie Powell @SpSallie]

#NHS #Hyperparathyroidism A lady with hypercalcemia, kidney stones & osteoporosis ten years told she must wait her turn - that's what she's been doing for ten years! Another with calcium 3.17 told to make a routine GP appointment. Some are forced to pay, but many can't afford to.