E207 - Addison's Disease with Prof. John Wass
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- Опубликовано: 27 июл 2024
- This episode will improve your quality of life and possibly save your life.
Prof. John Wass from OXFORD UNIVERSITY in the UK graciously shares his expertise and knowledge of living with Addison's Disease.
His career as an expert in the endocrine system is extensive, and his knowledge of Addison's Disease is rare but his heart to share and make a difference in the quality of life of people living with Addison's Disease is priceless.
He gives insight on topics from updosing, and advocating, the importance of emergency injection kits, pregnancy, osteoporosis, DHEA supplements, and the importance of using your common sense to live the best life with Addison's Disease.
It was truly an honour to have Prof. John Wass become an honorary "PICKLE" in our jar.
He will validate your journey. He will inspire you. He will empower you. He will give you hope.
We can live quality lives with Addison's Disease.
The knowledge is available and with people like Prof. John Wass and the ADDISON'S DISEASE SELF HELP GROUP of the UK...the heart is there as well.
IMPORTANT LINKS
Addison's Disease Self Help Group
www.addisonsdisease.org.uk/
BOOK "LIVING WITH ADDISON'S DISEASE"
Please comment on the video below and help make our voices heard!
We are a family and as a family, we can make a difference.
THE PICKLE JAR PODCAST through donations at:
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If you would like to share your journey on THE PICKLE JAR please go to www.chronicallyfitcanada.com for more information.
DISCLAIMER: The information from THE PICKLE JAR represents the experiences of the host Jill Battle and the individual experiences of each guest. No information is intended to provide or replace the medical advice of a medical professional. The host or guests are not liable for any negative consequences from any treatment, action, application or preparation, to any person following the information from the podcast.
He is an amazing man who really wants to help all those who come under his care. He fights for what we should be getting in the UK. He founded the Pituitary Foundation 30 years a go. I'm very privileged to able to ask him questions for my Cushing's group in the UK.
WOW lucky you...I want to have him over for dinner!!! LOL. He is amazing!
Thank you so much;I really needed this I just came from endocrinologist pain management. they want to send me to a psychiatrist. I laughed. I told him I need to stress dose more no psychiatrist.😮
So agree....good for you!! Keep fighting friend and advocate for yourself!
Such a fabulous interview! Thanks for organising this Jill, loved every minute and so refreshing to hear from an endocrinologist who has a passion for this rare disease 💕
THANK YOU....it was so much fun. I hope he will be on again for us...he is changing and saving lives!!
Thank you from Southern California! Very helpful!
@@thelawnranger184 ❤️❤️❤️❤️
Thank you. Outstanding video esp for those of us who are not well informed or unsure because our Endocrinologists fall short. I am a 70 year old male diagnosed in 2018 with AD.
Perhaps a video on nutrition or diet would be helpful. I overcame issues with sleep with a low carb diet. I lead a healthy lifestyle too.
Thank you for this! So wonderful hearing from a knowledgeable and caring endocrinologist.
AGREE....the do exist!!!!!!!!! hooray for us!
This was fantastic! Thank you both! I’ve been confused about the testosterone and DHEA situation for years. My first endocrinologist, who diagnosed me, said I had the very lowest testosterone level they’d ever seen, but that was a good thing because I was a woman and I didn’t need testosterone!!!! The next endocrinologist I saw, after moving to a different part of the country, said I needed to take testosterone for life and put me on testosterone tablets, but when I had to move yet again to another region, my 3rd endocrinologist said I didn’t need testosterone, but did suggest trying DHEA. I know I don’t make any DHEA so I bought some from a legitimate site in the US to be shipped over to the UK, but I didn’t feel any noticeable difference taking it, so I stopped because it’s costly (not available here on the NHS). Now I’m wondering whether I should ask to go back on testosterone and whether I should try taking DHEA for a few months to see if it makes a difference over time 🤔 It’s given me a lot to think about.
I have a non-stop battle when I go to my nearest A&E (ER) because it’s a small hospital & despite having quite a few admissions it’s different staff each time & they never see the importance of a time critical steroid injection, I don’t have anyone to advocate for me & when I try to show them my red emergency card & any info on adrenal insufficiency, they refuse to even read it!
I often feel safer staying at home knowing I’ve got four injections, than going into A&E & having my medication taken off me out of my own bag, & then not being given an emergency injection or getting my steroids on time when I’m on a ward. I wish I lived closer to my specialist hospital so I could go there in an emergency, because I’m sure I wouldn’t be ignored or left without steroids, if I was there!
Thank you!
Hey there friend...great ideas to ask Prof Wass next time...he suggested advocates and documentation to support emergency visits. It is sad we do not have the knowledge and support...his hour time for steroids was great. and to BLAST them with information and your team of ppl who support you..I need to listen..I can't remember everything he said!!
I’ve saved it to re-watch! Thanks so much for organising this!
Do you need to keep your solucortef in the fridge? I have two injection kits. One at home and one in the car - neither in the fridge.
@@kevinmckay1955 hey there. Sounds like in the uk it comes mixed and needs refrigeration. In canada with powdered solu cortef we mix when needed doesn’t have to bec
Ok that makes sense. I read the instructions again to make sure I wasn’t missing anything. He was wonderful. Will check out DHEA as well.
Love this podcast, I only wish I can find a Dr who knows how to treat primary Addisons Disease, I live in the USA .
I am on SSI disability and Medicaid and there is not many Endrocologist (maybe 5) that take Medicaid and if they do, they only treat people with Diabetes, and they never heard of Addison's Disease.
Every month I am in limbo, looking for a Dr who can treat me and knows all about Addison's Disease and prescribe my needed meds Hydrocortisone and Synthroid, forget getting a emergency kit I have been to many many Internal Medicine Dr's they will prescribe my meds but they know nothing about Addison's, and refuse to prescribe the emergency injection, if I am unwell, I'm told to drive myself to the nearest E. R which is 10 minutes from me.
I have Primary Addison's, Hypothyroidism
And no I cannot afford to pay for a Dr out of my pocket, I am barely getting by, and some of these Endo Dr's office visits start at $200.00 + and no guarantees they know how to treat my Addison's Disease.
Oh friend...this hurts my heart..this should not be happening...any organizations in the US you can reach out to for support and get a kit! Try FB groups for leads?
Most doctors in America have been soo dumb down. It’s sad. Our gov is at fault
@@charlotterawls7871 they definetly need to be educated and we need to be a LOUD voice together saying we need change and how it feels to live with this illness
Amazing episode! Thank you so much!
Thank you Mark for your continued support ❤️
I think this is a wonderful interview. I really appreciate this so much he seems like a wonderful doctor. I am so happy that I watched this video. It helped me. I need that DHEA and I’m trying to eat right trying to prevent from having to take that medication but anyway, thanks so much for the video. I think you got a great teacher there. Great doctor, seems like he really cares you can tell he’s out to really help people. Great guy.🥰❤️
Yes he was wonderful and kind...very informative and hopefully we will join us again
GREAT INTERVIEW!!! I WISH ALL DOCTORS THOUGHT LIKE HIM!!!
Thank you for the comment...as my daughter woudl say "HE WAS A TRUE GEM!"
Thank you so much for this video. You're both fantastic. Jill I only function on high dose hydrocortisone as well. It's that or I wouldn't be here. We all need to really listen to our bodies,and trust ourselves. We all react differently to daily chores or stressors.
Completely agree!!! It is an individual illness with limitless factors that effect each of us differently. Take care friend ❤️
Super interview. Thanks to both you and John for doing this. Need to push my endocrinologist about DHEA now.
AWESOME...glad it was helpful...keep fighting my friend.
Absolutely fantastic interview, was so funny and enjoyable to watch. Great to see someone who knows what he is talking about! Need more specialists like him. Thank you to you both for the interview ❤️
LOVE HIM!!!!!!! IT was amazing!!!!!!!!
Thank you both!!
Hope you enjoyed it and found it helpful!!!
I love this guy!
Me too!!!!
Delightful man! Wonderful on both of you.
THANK YOU FRIEND...he was amazing....so easy to talk too!
Thank you so much for this episode! Very interesting. I just ordered his book.
FABULOUS!!!!!!!! It is an amazing book!!!!!!!
I had never been previded with injection by my endocrine Dr I'm 65 years old and only dinoses 2years coming August my GP doesn't have a clue about Addison disease
Thankyou both!🥒💚🧂✨️
Hope you enjoyed it....loved him to pieces
Great interview! About DHEA… my endo told me because i’m 58 that i don’t need it. Is that true?
I would say from the interview Prof Wass feels we all do! What do you think? Ask for your DHEA and testosterone to be tested...DHEA converts to testosterone and you need that !
I am in the UK, and wish that typical endocrinologists knew half as much as Professor Wass. I am seeing a new endo in a couple of weeks as I am dissatisfied with my existing one. If the new one isn't up to scratch my next step will be trying to see Professor Wass. I am still waiting for an answer from my existing one about DHEA, as supplementing wasn't even mentioned when I was diagnosed or when I saw my current endo, so I sent a question about it about a month ago - not a word back since. I haven't even asked the endo about dosing, just whether it is a good idea. Both Professor Wass and the Ninja Nerd RUclips video about AI seem to suggest it is pretty much an automatic yes to DHEA, so why my local NHS endocrinology team don't even mention it is a bit of a mystery
Ahhh it is so frustrating and your story is so so so common...the truth most ENDO's do not know what to do with you and most are not willing to learn...keep fighting for answers friend!
How is your life now with the pump? Tell us about it please, many do not know anything about the pump.
@@thelawnranger184 ive been on it for about 7 years. Quality of life for me greatly improved. I have lots of videos on the pump. Check them out ❤️
I don’t keep my injection in the fridge? Is that a UK thing?
Yes I believe theirs need to be refrigerated. In Canada we dont need to do that ❤️🦋
Please help!
How did you make out? Did you get my email back? Hope things are well
Do you have trouble sleeping?
No i dont if my meds are good ❤️🦋