Boss Lady

An endo delayed referring a #hyperparathyroid lady to a surgeon for 3 years & saved the NHS £10 recently by not testing #PTH. She collapsed at A&E today and was found to have multiple stones in both kidneys. A true reflection of the #NHS for hyperparathyroid Watch&Wait nonsense

@BAETS_UK Normocalcemic primary hyperparathyroidism paper published September 2024 in The American Journal of Surgery. We would request for you to circulate it to your members and also request that you share and discuss it with @Soc_Endo & @rcgp please. sciencedirect.com/science/articl…

I just supported Weather Alerts Ireland - Nick with €9 on @buymeacoffee! 🎉 You can support them here — buymeacoffee.com/weatheralertsi…

@donnyosmond how could you forget my birthday when it’s the same day as yours 🤷‍♀️ Just kidding 😉. Hope you had a grrrreat day! Geraldine/Ireland

Another 5 patients listed for #parathyroid surgery today. All symptomatic. Some with renal stones. All with calcium levels below the arbitrary "magic number" of 2.85. @SpSallie

@DrSarahJarvis listening intently today on R2 about osteoporosis waiting for a mention of hyperparathyroidism, sno mention. Seems it’s very rare for doctors to connect the two things, hence undue suffering for a lot of patients. Let’s have a medical Monday on PHPT @SpSallie

As a heads up to #parathyroid surgeons, many of our members (your patients) will be asking these questions at their first appointments if you would like to have answers prepared. Thank you

Whilst doctors have been watching&waiting for 2.85 & hospital labs have refused to test PTH based on NG132 advice, this has been happening. These are figures obtained from the NHS. One member said, 'Did they die not knowing they had PHPT & their deaths could have been prevented?

A lady with persistent PHPT, 7 years after 1st surgery: 'Much change is needed in the medical world about #normocalcaemicPHPT. It changes who you were, takes you over completely. You become a hermit, frightened to go out alone, as you're no longer a functioning person anymore.'

Oh, another endo with two patients whose calcium is below 2.85mmol/l.. Not yet... you can just wait in a very dark place until your calcium gets much higher...

Primary #Hyperparathyroidism in the UK. Suffering patients are often forced to wait for calcium to reach 2.85. NICE guideline recommendation 1.3.2 says ignore all the above and do the opposite. It's THE best recommendation. Quote it back to your doctors to get the help you need.

This is not ok. 2.85 is such an arbitrary figure. We treat so many symptomatic patients with calcium's lower than this with excellent outcome. It's not just about the numbers!

Once upon a time in #Parathyroid Land, doctors chose a magic number, 2.85 to give everybody free surgery. How lovely. Everybody with calcium below that number had to pay lots of money. They all became very sick. Their bones broke. Some had a stroke. Some died. A true #NHS tale..

Talking to a lady in Belfast tonight who before her #parathyroidectomy in May, asked her surgeon to locate all glands. He said it wasn't needed. Her PTH remained high after surgery. It has increased further. He wants repeat bloods in November. It won't reduce. She needs a re-op.

I'm looking for recommended #parathyroid surgeons in #France who recognise and operate on #normocalcemic phpt patients..

Hyperparathyroidism, Parathyroid Hormone, Cardiovascular Disease. Hyperparathyroid UK established 09/14 (not to be confused with Parathyroid UK) #newblogpost #Hyperparathyroidism #Cardiovascular #Atherosclorosis wix.to/6YBhXuO

Clinicians who see our leaflets & think 'oh that makes sense, let me look that up. Oh yeah, this leaflet is right. We've been telling our patients a load of rubbish. Damn, that's embarrassing. We'd better read this website and get ourselves up to date'.. Hyperparathyroiduk.com

@Doormouse83 What happened ?

Hold your family and friends close tonight. Tell them that they are loved. Nottingham is a City I know and go to quite often as I live in the county. This incident is rare. #standwithnottingham.

@SpSallie With me it was like they looked at other causes for years ( bp meds, diet etc) before finally throwing their hands up and saying “Oh it must be HPTH” Even then the wait for endo appt, wait for surgeon appt added more years 🤦‍♀️

A group discussion today started by a new member hospitalised with kidney stones and calcium of 3.25. Medical records show she had hypercalcemia of 2.7 in 2015. She wasn't told. So many others responded their hypercalcemia was also ignored 7-10 years. We can't understand why..

@ConlanBoxing Was thinking about him all day. Praying for a full recovery 🙏🙏

All our thoughts and prayers are with Ludumo Lamati 🙏