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Boss Lady

@GerriMartin9

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Following
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Galway, Ireland
Joined January 2009
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@SpSallie
Sallie Powell
4 months
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
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@SpSallie
Sallie Powell
10 months
@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. https://t.co/XS6qKI4hEv
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@GerriMartin9
Boss Lady
11 months
I just supported Weather Alerts Ireland - Nick with €9 on @buymeacoffee! 🎉 You can support them here —
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buymeacoffee.com
Nick provides Weather Alerts in Ireland - keeping everyone up to date on a daily basis!
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@mjaward
Matt Ward 🇵🇸
2 years
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
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@suzysue1111
Sue haywood
2 years
@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
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@SpSallie
Sallie Powell
2 years
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
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@SpSallie
Sallie Powell
2 years
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?
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@SpSallie
Sallie Powell
2 years
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.'
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@SpSallie
Sallie Powell
2 years
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...
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@SpSallie
Sallie Powell
2 years
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.
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@Solent_Parathy
Solent Parathyroid
2 years
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!
@SpSallie
Sallie Powell
2 years
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..
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@SpSallie
Sallie Powell
2 years
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..
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@SpSallie
Sallie Powell
2 years
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.
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@SpSallie
Sallie Powell
2 years
I'm looking for recommended #parathyroid surgeons in #France who recognise and operate on #normocalcemic phpt patients..
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@SpSallie
Sallie Powell
2 years
Hyperparathyroidism, Parathyroid Hormone, Cardiovascular Disease. Hyperparathyroid UK established 09/14 (not to be confused with Parathyroid UK) #newblogpost #Hyperparathyroidism #Cardiovascular #Atherosclorosis
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@SpSallie
Sallie Powell
2 years
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'..
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hyperparathyroiduk.com
Essential guide for patients with primary hyperparathyroidism (PHPT), and doctors who need up to date information.
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@SpSallie
Sallie Powell
3 years
Most days, I think I've a lot of patience, but days like today, it begins to wear thin. A GP told his osteoporotic patient on Alendronic Acid that her calcium of 2.77 is normal. Not on planet earth, it isn't. PTH elevated. Vit D good. https://t.co/v4oFzH1IYw
newsroom.ucla.edu
UCLA-led study finds that drugs commonly used to combat the condition actually increase the risk of fracture, meaning that taking them is worse than doing nothing at all.
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@GerriMartin9
Boss Lady
3 years
So…. Had a fracture. Have kidney stones 😫. Definitely getting surgery before I have a cardiac arrest!!!! I thought the Hippocratic oath was to do no harm???
@SpSallie
Sallie Powell
3 years
We've heard today that a surgeon with long waiting times is consequently offering his patients a new option. 'Would you like surgery or to 'wait and see?'.. ummmm, get my life back or wait and see if I have a cardiac arrest, kidney stones or fractures?.. let me think about it...!
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@GerriMartin9
Boss Lady
3 years
Quiet Sunday, YouTube in the background with @donnyosmond live at Edinburgh Castle. What a fun day that was ❤️ #memories #donnyosmond #Geraldine #Ireland
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