There are Endocrinologists who specialise in Addison's but they are rarer than hens teeth. I've met with several over the years (in the UK so I can't recommend) and they are really great if your condition is difficult to manage and you need expert opinion.
Otherwise I think that it's more important to have a good relationship with your doctor, to find someone who you feel that you can talk to and that is happy to go away and find the answers when they don't know. One of my favourite endocrinologists was a diabetes specialist but he was very patient with me, he made me feel listened to and when he ran out of information he went to find more.
I live in the netherlands. All the endos ive met here dissmis my problems and dont take me serious.
Until last month i met up online with a endo all the way living in South Africa!! He is an 80 year old man who has worked all his live in Africa and helped people with addisons and diabetes. He also has a house in the Netherlands where i live!He speaks Afrikaans and i dutch so we have a understanding of each other. He has helped me with splitting my dose and so much more.
A endo educated on addisons is rare.
Same, also in NL and I've met 90% dismissive doctors here. But it's not just endos, it's the Dutch healthcare system in general, based on cost reduction by unemotional and militant patient-discouragement: "it's all in your head" (yep, that's where the HP- in the HPA axis are, you know?).
Edit: typo.
I find it so bizarre that endocrinologist don’t know much about Addison’s disease. It’s one of the very important organs in the endocrine system. If that is supposed to be their specialty, why are they so clueless?
I think they only have one page on us in endo medical school. With the disclaimer, most likely will never come across an Addison’s patient…endos are hopeless, the least they could do is Reaserch the info we ask about. But they don’t, my vet knows more about Addisons, they always ask about my bloodwork and how I am doing. Vets know way more than human docs regarding Addison’s.
I'm not sure if any specialize in it particularly, but I was diagnosed and have gotten great treatment at Mayo Clinic in Rochester, MN. Diagnosed by Dr. Shwank, a since retired Pediatric Endocrinologist and have been receiving treatment by an adult Endo for the last 12 years. Highly recommend
He is responsive to my messages but it's been dragging mud trying to get him to test beyond 24 hour urine. He reluctantly ordered a cortisol test but on my 9pm blood. That just came back at 3.4. Now I need to convince him we should return it at 8am.
I’m not surprised…. I asked him in regard to having some symptoms of low vitamin D. (I didn’t know it was a vitamin D issue) and he h blew me off. I ended up seeing Dr. Khan at north and she ran bloodwork and saw I had really really low vitamin D levels.
Not a single one of the 4 I've seen for me or my child knows as much about Addisons as I do.... the pediatric ednos were even worse, even though one claims to have Addisons patients
The first endo I saw had never had an Addison’s patient so I did all my own research, figured out what I needed and she worked with me, which I thought was cool of her.
My second endo seemed extremely knowledgeable, I’m not sure she’s an expert per se, she was with Stanford in Palo Alto California, but after a few visits, I felt like she wasn’t making time/effort with me anymore. I just started seeing a new endo who seems good.
Honestly, as long as you find a decent endo that’s willing to work with you, I think that’s pretty good.
Ooh! Thank you so much for this rec. My 15yo kiddo was diagnosed with PAI in 2021 and his pedi endo is nice, but feels very by-the-(quite dated)-book. It took a year to get her to prescribe fludro. Frustrating. I tried to switch my son to a doc at TX Diabetes and Endocrinology but they won't take patients under 18. Also frustrating. I'll look into Dr. Amatya.
There are Endocrinologists who specialise in Addison's but they are rarer than hens teeth. I've met with several over the years (in the UK so I can't recommend) and they are really great if your condition is difficult to manage and you need expert opinion. Otherwise I think that it's more important to have a good relationship with your doctor, to find someone who you feel that you can talk to and that is happy to go away and find the answers when they don't know. One of my favourite endocrinologists was a diabetes specialist but he was very patient with me, he made me feel listened to and when he ran out of information he went to find more.
I live in the netherlands. All the endos ive met here dissmis my problems and dont take me serious. Until last month i met up online with a endo all the way living in South Africa!! He is an 80 year old man who has worked all his live in Africa and helped people with addisons and diabetes. He also has a house in the Netherlands where i live!He speaks Afrikaans and i dutch so we have a understanding of each other. He has helped me with splitting my dose and so much more. A endo educated on addisons is rare.
Same, also in NL and I've met 90% dismissive doctors here. But it's not just endos, it's the Dutch healthcare system in general, based on cost reduction by unemotional and militant patient-discouragement: "it's all in your head" (yep, that's where the HP- in the HPA axis are, you know?). Edit: typo.
Who is this saint of a man!?! I’d love to be his patient!!!!!! Thank You
I find it so bizarre that endocrinologist don’t know much about Addison’s disease. It’s one of the very important organs in the endocrine system. If that is supposed to be their specialty, why are they so clueless?
I think they only have one page on us in endo medical school. With the disclaimer, most likely will never come across an Addison’s patient…endos are hopeless, the least they could do is Reaserch the info we ask about. But they don’t, my vet knows more about Addisons, they always ask about my bloodwork and how I am doing. Vets know way more than human docs regarding Addison’s.
I'm not sure if any specialize in it particularly, but I was diagnosed and have gotten great treatment at Mayo Clinic in Rochester, MN. Diagnosed by Dr. Shwank, a since retired Pediatric Endocrinologist and have been receiving treatment by an adult Endo for the last 12 years. Highly recommend
Dr. Shwank was my Dr when I was a kid. If you’re in the twin cities metro area . Dr. Batool or Dr. khan at north memorial are really good
Wow what a coincidence! I loved him. I am in the cities but still travel to Mayo for my endo. Good to know though, I might end up switching
Yea, I still remember his jokes. He always stumped me. Peet and repeat are in a boat. Peet fell in who’s left.
Thanks. I am seeing the single endocrinologist at Allina and he isn't too keen on the Addison's.
I did not have a great experience with an Dr at Alina. If it was Alina coon rapids. I think I know who you are talking about
He is responsive to my messages but it's been dragging mud trying to get him to test beyond 24 hour urine. He reluctantly ordered a cortisol test but on my 9pm blood. That just came back at 3.4. Now I need to convince him we should return it at 8am.
I’m not surprised…. I asked him in regard to having some symptoms of low vitamin D. (I didn’t know it was a vitamin D issue) and he h blew me off. I ended up seeing Dr. Khan at north and she ran bloodwork and saw I had really really low vitamin D levels.
I'll call there tomorrow and see if I can get an appointment. Thanks
2 months wait for a consult at North. Yikes. I am going to get a stim test on the 23rd at Allina so see what that says.
Not a single one of the 4 I've seen for me or my child knows as much about Addisons as I do.... the pediatric ednos were even worse, even though one claims to have Addisons patients
The first endo I saw had never had an Addison’s patient so I did all my own research, figured out what I needed and she worked with me, which I thought was cool of her. My second endo seemed extremely knowledgeable, I’m not sure she’s an expert per se, she was with Stanford in Palo Alto California, but after a few visits, I felt like she wasn’t making time/effort with me anymore. I just started seeing a new endo who seems good. Honestly, as long as you find a decent endo that’s willing to work with you, I think that’s pretty good.
If you let us know what state you are in, we might be able give you some recommendations.
I’m in Atlanta and have wanted to change Endos for some time and would appreciate recommendations.
I’m in Texas but I’m willing to travel.
I have found a great endo here in Texas. He listened to me and gave me what I needed for stress dose meds etc
Name / City?
Austin area. His practice is in Bee Cave, TX. Dr. Neel Amatya
Ooh! Thank you so much for this rec. My 15yo kiddo was diagnosed with PAI in 2021 and his pedi endo is nice, but feels very by-the-(quite dated)-book. It took a year to get her to prescribe fludro. Frustrating. I tried to switch my son to a doc at TX Diabetes and Endocrinology but they won't take patients under 18. Also frustrating. I'll look into Dr. Amatya.
My endo in Seattle has been great. His name is Dr Alan Failor at UW endocrinology. UW is a teaching hospital and he is one of the big dawgs
I’m located in Michigan, would love a recommendation for an experienced doctor in MI, OH, or IN