Prolactinoma #PitHour on Twitter
On Thursday 24th March at 6pm, The Pituitary Foundation held #PitHour, an hour dedicated to patients being able to ask endocrine professionals, and each other, for advice and suporrt surrounding their pituitary condition. This month, the #PitHour was focussed on patients with Prolactinoma.
Thank you to everyone who came along and engaged, there were some important conversations and lots of support shown by all. A special thank you to endocrine professional Lisa Sheppard who joined us and answered some of the more technical questions asked by patients.
Here are some of the highlights from the evening:
There were lots of responses to the first promt, what are the biggest challenges facing people with prolactinoma? Lots of solidarity was shown to Vicky, who shared this tweet.
Getting people to understand that just because it’s benign doesn’t mean it’s symptomless! Long term (decade and a bit) Cabergoline taker here! #pithour
— Vicky (@stumblingboots) March 24, 2022
After sharing a poll in which people could vote for how long it took them to get diagnosed, many reassuring stories were shared about getting a quick dignosis. Along with this, we asked people to share their positive pituitary stories. It was great to hear about the excellent care Clare has received.
My consultant who is now deservedly a professor was absolutely brilliant. Understanding, supportive, confident & clear. He supported me throughout. I have just been discharged after over 14 yrs of care.
— Clare Kitteridge (@Claremadeline) March 24, 2022
Plus, one our volunteers and regular fundraisers shared how The Foundation has made her journey that bit easier, along with some brilliant pictures.
All the amazing people I’ve got to meet since joining the foundation as a fundraising ambassador 6 years ago pic.twitter.com/nHQrftTedz
— Jessica Buck (@jessica16_x) March 24, 2022
One of the reoccuring issues brought up was the side effects of certain medications. Lots of advice was shared amongst patients, including:
Feeling drowsy/dizzy/sometimes nauseous with neck ache and headaches on the night I take it and part of the day after. I take cabergoline twice a week - since Dec 2021. I can sleep off most of the side effects because I take it with my evening meal. #PitHour
— Sabs (@fabbabsab) March 24, 2022
Getting into a routine with the meds really helps (ie take with food, early night, plan around quiet days) #pithour
— Vicky (@stumblingboots) March 24, 2022
As well, Lisa suggested different types of medications to bring up and try with your endocrinologist if your current medication isn't working out for you.
There are a few options your endocrinologist may suggest cabergoline, bromocriptine, quinagolide #pithour
— Lisa shepherd (@lisashepherdcl1) March 24, 2022
We were aked if there were resources or information available to pass on to GPs to help them understand. We have a range of resources on our website, including a dedicated GPs and healthcare professionals page. Lisa suggested passing on a copy of our Prolactinoma booklet which you can order from our website or download for free.
I would definitely give them a copy of the @Pituitary_org prolactinoma leaflet. GPs have to have knowledge about so many other conditions. https://t.co/LjjhoKJKXW
— Lisa shepherd (@lisashepherdcl1) March 24, 2022
Finally, prolactinoma patient Vicky shared some words of wisdom:
Biggest thing I’ve learnt - don’t fight the bad days (if life/work allows). The pituitary controls so much of what we need to function. If your body’s saying slow down, there’s a reason why! pic.twitter.com/XHtBWMuyCt
— Vicky (@stumblingboots) March 24, 2022
Thanks again to everyone who joined in last night. There's lot more over on the full 'moment' on our Twitter page, you don't need a Twitter account to be able to see this! We’ll be having our next #PitHour on 28th April, so be sure to join us then, topic tbc!
Keep an eye out on our socials for some other online events that we’re planning. Coming soon…
