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.
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.😮
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 💕
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?
@@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
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!!
@@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
Don't think Prof Wass will see your message but YES I would ask ask ask. Give scenario's of when you might need it...I live in Canada...I might need it in a snow storm, car accident etc and many don't get treatment fast enough in hospital and need to inject while they wait. YES YOU NEED ONE ❤️
That’s so interesting I learnt so much from this I need to see this Dr I think it will help me . I will try and email him and tell him what’s going on with me as an individual so I can share my experience so far . I’ve learnt more from the internet. Thankyou for this interview
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 ❤️
Wow. Just seen this podcast. He is the man. I am actually under Oxford University but not Professor Wass. So much useful info. So many things that actually have not been mentioned before to me and things that I have had to sort for myself that now I have a point of reference for and validation! 😃👍🏻❤️
Absolutely wonderful! So glad to have found your wonderful podcast and delighted to hear from the amazing Professor Wass. He is such a darling! Thank you so much from an Addie in Scotland 💙🏴 xx
I'm super annoyed having to have lived in Tampa Bay for 25 years and no one until I moved to ga and went to endo in atl and he changed me to hc and TOLD ME ABOUT THIS RESCUE INJECTABLE AFTER ALL THE YEARS OF CYCLICALLY PUKING, ER, REPEAT... SUCKED
Also, Dr Wass, I ADORE YOU!!!. NEW TO ME AS OF TODAY. I am in US and now I'm gonna find me things to help QOL.. I'm a bone marrow transplant recipient and Addisons and well, arghhhhhh. Now I'll need to new endo bc mine left i guess.. sigh
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.
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
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 !
Need more information for what drugs to try to talk with these doctors don't know enough my regular Dr. Reads all what I send need more to show on drugs to try
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.🥰❤️
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.
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 UA-cam 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!
@@chronicallyfit_withjill no, I’m sorry I just saw this message. I was feeling really achy but as soon as I ate lunch all my pain went away. Maybe the salt in there hit the spot. I am upping my hydrocortisone for a few days and taking a bit in the afternoon especially if it’s hot and I’m doing garden work which wipes me out. I live it super hot Florida. Thankfully the winters cool down quite a bit in northern Florida and sweating winters be an issue.
What a neat man, and so reassuring. Thank you Jill, it must have been daunting 😅. And thank you Dr Wass.
LOVE HIM...he is amazing. Thank you for your comment my friend ❤️
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!!
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
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.
Dr Wass. I am Secondary adrenal insufficient. I was told by my pharmacist that I didn’t need an injection kit. Should I ask again?
Don't think Prof Wass will see your message but YES I would ask ask ask. Give scenario's of when you might need it...I live in Canada...I might need it in a snow storm, car accident etc and many don't get treatment fast enough in hospital and need to inject while they wait. YES YOU NEED ONE ❤️
That’s so interesting I learnt so much from this I need to see this Dr I think it will help me . I will try and email him and tell him what’s going on with me as an individual so I can share my experience so far . I’ve learnt more from the internet. Thankyou for this interview
He is amazing ❤️❤️❤️ glad you found it helpful ❤️❤️❤️
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!!!!!!!!
Wow. Just seen this podcast. He is the man. I am actually under Oxford University but not Professor Wass. So much useful info. So many things that actually have not been mentioned before to me and things that I have had to sort for myself that now I have a point of reference for and validation! 😃👍🏻❤️
His episode is incredible...everyone should watch. I hope to have him on again....life changing for so many of us ❤️
Finally! A great ‘how to:’. Thank you!
he was such a GEM...he was so wonderful ❤
Absolutely wonderful! So glad to have found your wonderful podcast and delighted to hear from the amazing Professor Wass. He is such a darling! Thank you so much from an Addie in Scotland 💙🏴 xx
Yes he is amazing. Everything needs to watch to episode over and over and over. ❤️❤️❤️
Thank you for this! So wonderful hearing from a knowledgeable and caring endocrinologist.
AGREE....the do exist!!!!!!!!! hooray for us!
Thankyou and Dr Wass for this marvelous lecture 🙏❤️
He is amazing...so thankful he shared with us ❤
Don’t be scared but be prepared.
GREAT INTERVIEW!!! I WISH ALL DOCTORS THOUGHT LIKE HIM!!!
Thank you for the comment...as my daughter woudl say "HE WAS A TRUE GEM!"
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.
In southern Florida anymore known a good endocrinologist near hear im in Naples
Wish I could help friend...did you try asking in any Facebook groups?❤️
I'm super annoyed having to have lived in Tampa Bay for 25 years and no one until I moved to ga and went to endo in atl and he changed me to hc and TOLD ME ABOUT THIS RESCUE INJECTABLE AFTER ALL THE YEARS OF CYCLICALLY PUKING, ER, REPEAT... SUCKED
Also, Dr Wass, I ADORE YOU!!!. NEW TO ME AS OF TODAY. I am in US and now I'm gonna find me things to help QOL.. I'm a bone marrow transplant recipient and Addisons and well, arghhhhhh. Now I'll need to new endo bc mine left i guess.. sigh
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.
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
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 !
Need more information for what drugs to try to talk with these doctors don't know enough my regular Dr. Reads all what I send need more to show on drugs to try
I hope Prof Wass video was helpful he is extremely knowledgable and compassionate about our illness. ❤️
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
Thank you from Southern California! Very helpful!
@@thelawnranger184 ❤️❤️❤️❤️
Delightful man! Wonderful on both of you.
THANK YOU FRIEND...he was amazing....so easy to talk too!
I love this guy!
Me too!!!!
Thank you so much for this episode! Very interesting. I just ordered his book.
FABULOUS!!!!!!!! It is an amazing book!!!!!!!
Amazing episode! Thank you so much!
Thank you Mark for your continued support ❤️
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 ❤️
Thank you both!!
Hope you enjoyed it and found it helpful!!!
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 UA-cam 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 about doing some weight lifting for bone health?
Yes for sure...very very important!
Where did you get your pump from?
Hey there. Are you in Canada? I use Medtronic infusion pump and got it from the company directly ❤️❤️
@chronicallyfit_withjill i live in Philadelphia. There is no company that i can find here.
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 ❤️
Is exercise a reason to updose?
Hey there. Me personally I need to. So many things to consider. I really listen to the signals from my body ❤️
I had a sodium level of 127 in last blood draw. Do you recommend increasing hydrocortisone or fludrocortisone?
Hey there. You would need to consult with your medical team. Have your heard from them? ❤️
@@chronicallyfit_withjill no, I’m sorry I just saw this message. I was feeling really achy but as soon as I ate lunch all my pain went away. Maybe the salt in there hit the spot. I am upping my hydrocortisone for a few days and taking a bit in the afternoon especially if it’s hot and I’m doing garden work which wipes me out. I live it super hot Florida. Thankfully the winters cool down quite a bit in northern Florida and sweating winters be an issue.
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 ❤️🦋
Thankyou both!🥒💚🧂✨️
Hope you enjoyed it....loved him to pieces
Salute
Do you have trouble sleeping?
No i dont if my meds are good ❤️🦋
Interesting, but what he says about osteoperosis is not correct.
Screening is not helpful for all cause mortality.
Please help!
How did you make out? Did you get my email back? Hope things are well
Jill can we set up a ph call please.
No, I didn’t get your email!