Gill Masters

MEN1 patient and UK MEN1 representative for Amend (Association for Multiple Endocrine Neoplasia Disorders)

[Neuroendocrine Cancer UK #NotJustNECancer @ncukcharity]

Today is #WorldNeuroendocrineCancerAwarenessDay! A day to unite, raise awareness, and support those affected by neuroendocrine cancer. We're excited to announce our collaboration with @AmendInfo (Association for Multiple Endocrine Neoplasia Disorders. Stay tuned for more!

[Gill Masters @GillUnderhill]

@AmendInfo Incredible effort - thanks so much Ryan, and good luck! 💛

[shad khan @ShadKhanSurgeon]

Managing post para/thyroid bleeding. Another #SCOOP training delivered at @OUHospitals with @Sallyshiels1 @OxSTaRCentre. Making surgery safer #patientsafety. 70 more staff trained @RaduMiSurgeon @BAETS_UK @dr_imranahmad @dasairway @elboghdadly @RamsinghJason @_Lian_Lee

[Gill Masters @GillUnderhill]

@Soc_Endo @mileslevyendo @uniofleicester Congratulations! 👏🏼

[Gill Masters @GillUnderhill]

#hopewinter on #TheVoiceUK raising awareness of #MEN1 in front of the whole country! What an amazing voice, that girl can SING 💛

[Gill Masters @GillUnderhill]

@Solent_Parathy There’s still an argument for surgery even if the patient isn’t hugely symptomatic - my calcium sat between 2.5 and 2.6 for 15 years and caused osteoporosis, kidney stones and nephrocalcinosis. Post op calcium now sits just below mid range so it was high for me all that time!

[Gill Masters @GillUnderhill]

@hollynayru @AshleyGWinter This was me 3 years ago. 1 x sachet Monuril (fosfomycin) to clear UTI, then Hiprex daily for 12 months. Urologist sorted me after GP failed x

[Gill Masters @GillUnderhill]

@drkeithsiau I’m so pleased to see this! As an MEN1 patient it’s so reassuring to see awareness of this condition growing. At diagnosis back in 2007, my GP had never heard of it and it was a very lonely journey. Very happy to be raising awareness wherever we can 💛 AMEND 💛

[NET Cancer Day @netcancerday]

#MEN1 is a rare endocrine genetic condition. There are 3 main types of growth: in the parathyroid glands in the neck, the endocrine pancreas & gut and the pituitary gland.
✅Download #NETInfo in your language: https://t.co/5dFSpEC3GX
#LetsTalkAboutNETs
#EndoTwitter @AmendInfo

[Nordic Kay @NordicKay]

Why is this disease not taken seriously? It shouldn't be dismissed, or treated with a wait and watch approach and patients should not have to wait until damage is done! 🙄 #health #hyperparathyroidism #hypercalcemia

[Sallie Powell @SpSallie]

Traditionally our group members find themselves in the 3,2,1 or 1/2 gland clubs after #parathyroid surgery. 2022 has seen a 5 gland pre op club with 7 members, a teenager club, and a member is holding the door open at the 6 gland club. Please never stop learning about #PHPT...

[Michael Yeh @michaelyehmd]

What can be done about the underdiagnosis and undertreatment of primary #hyperparathyroidism?

A thread👇
@AcademicSurgery @TheAAES

[Gill Masters @GillUnderhill]

@guyllrees @michaelyehmd @AcademicSurgery @TheAAES So pleased to see this! Ive had 3 x parathyroidectomies (hyperplasia) and began to suffer with this when my PTH was at its highest, prior to my last op. Hasn’t happened since! Awful condition, I wouldn’t wish it on anyone.

[Sallie Powell @SpSallie]

@DrAmirKhanGP Could you also please explain primary #hyperparathyroidism Left untreated (#parathroidectomy) it will cause osteoporosis. Surgery will often reverse bone loss. You're welcome to use my website as a prompt https://t.co/EW5O4qLDW6

[Gill Masters @GillUnderhill]

@rammoorthyENT @BAETS_UK We do. Parathyroidectomy x 3 MEN1 patient - happy to chat at the AMEND stand 😊

[Gill Masters @GillUnderhill]

@DrBenLovell @carolyngarritt @iambeckyhughes I have MEN1, we make a habit of growing tumours in various places. 15 years later, each scan brings anxiety but it’s my normal now, and does get easier. My son and I (he inherited it from me) go together for screening and treat ourselves to a really good brunch - reward yourself!

[Sallie Powell @SpSallie]

Sue had a #parathyroidectomy yesterday in Oxford with @ShadKhanSurgeon. All pre op scans were negative. Pre op calcium was 2.76, PTH 21. Our members want surgeons who are not guided by scans alone, who will examine all 4 #parathyroid glands. This is why:

[Gill Masters @GillUnderhill]

@DrBenLovell Nice to see your line-up of Lee Child and Jeffrey Deaver books! 😍

[Gill Masters @GillUnderhill]

@RoyalOsteoSoc Anyone diagnosed with osteoporosis or osteopenia should have their calcium and PTH (parathyroid hormone) checked - so many of us have primary hyperparathyroidism, it’s a common cause and so often overlooked. Easily cured by day surgery too, after which osteoporosis will reverse!

[Sallie Powell @SpSallie]

A guy named Guy shared this image yesterday after surgery in Oxford by @ShadKhanSurgeon Biochemically normal 4 gland hyperplasia. Highest calcium 2.56 (2.15-2.5) highest PTH 4.42 (1.6-6.9). Guy has been very unwell for 15 years. Lessons must be learnt #ItsNotAllAboutTheLevels