LindsayWhen you visit doctors as often as those of us with chronic illnesses do, you begin to understand that finding a great doctor – not just a good doctor, but one that listens, that cares, that doesn’t tell you that you just need to gain/lose weight or it’s just depression or worse yet – and I have a friend who was actually told this – that you just need to find a husband – is like finding the holy grail. It sounds fairly simple, right? I mean, all we’re really asking for is someone who is literally just doing their job – diagnosing and treating physical injuries and illnesses. Nothing more. And when you’re fortunate enough to find that, you forget how rare it can be.
My POTS cardiologist retired in August. He was a fantastic doctor. We would spend 40 minutes discussing my current POTS status, and another 15 discussing life. He’d ask about my husband and my job, I’d ask about his wife and daughter. We’d share life stories and bucket lists and goals. Although I only saw him once or twice a year recently, he still played almost a paternal role in my life.
I am one of the fortunate few who knew he was retiring and managed to get a final appointment where I could ask for one last medication refill and tell him how grateful I am that I met him 11 years ago, that he has changed my life for the better. However, many of my POTS friends that also saw him were not warned of his retirement, and found out by letter from Scripps (the health care system where he worked) two months after his retirement.
I expected that the difficulty in replacing such an amazing doctor would be having to weed through a few cardiologists who don’t believe POTS is an actual thing or who believe it is, but don’t know how to treat it. I imagined wasting several hours in multiple doctors’ offices as I searched for the right one. I never expected that the problem would be finding someone who will allow me to set foot in their office, even if just to tell me that I’m depressed and need to put on weight.
Since my doctor retired, cardiologists at Scripps have denied appointments to anyone who has a diagnosis of “POTS” on their record. The letter I received about my doctor’s retirement included a phone number you can call to be placed with a new specialist. Yet when you call the number, you’re told that no doctors there treat POTS. So you call another Scripps cardiology office and are told the same thing. Even if you want to see a cardiologist for a cardiac issue entirely unrelated to POTS, we’re still turned away. Yet, at the same time, Scripps has dedicated a lot of resources to its brand new long-COVID clinic, because long-COVID is the hot new thing, and us POTS OGs just aren’t that sexy anymore. We’re left in this health care purgatory with no foreseeable signs of movement.
I have been managing my own shit for a while, where my cardiologist would trust me to tell him what I need, and he’d write the script. So I’m fine dealing with it on my own if I can just find a doctor to work with me on the medication front. Any kind of doctor, like even a primary.
Which brings me to part two of my wish list: a new primary. My relationship with my primary started out a little iffy, but over time, she’s turned into a pretty great doctor. She has been helping me try to get to the bottom of this unexplained fatigue for months now, and although she admits she doesn’t know what it is, she orders this test or refers me to that doctor. If she wasn’t leaving, I don’t think she’d stop looking until I gave up. She knows what POTS is and, although she probably wouldn’t take over sole responsibility for managing it, she’ll listen if I ask to try a medication for it. Finding a new primary won’t be difficult – they aren’t in short supply. Find a primary that is willing to touch my POTS – that could be a different story. 
So, Santa, if you’re listening, all I really want for Christmas is a pair of fabulous docs, preferably who have no plans to retire or move for at least another 20 years and who hand out lollipops after visits.
Friends, whatever holiday you celebrate, I hope it was filled with love.
Smell ya later.
– Linds
Hugs. I still haven’t been notified that he’s no longer my doctor.
Oh gosh, you didn’t even receive the stupid letter?
My daughter tried to get in to see him two years ago but he was no longer taking new patients. She was also denied a cardiology appointment at Scripps because of her diagnosis of POTS, which really should be illegal in my opinion. She is currently a patient at Mayo in Phoenix. We drive the five hours each way every couple months. With all the long Covid patients experiencing POTS symptoms, you’d think someone in the San Diego area would care enough! My daughter has been without proper medical care for 7 years before finally having a doctor listen to her from Mayo… but then all they told her was nothing more can be done than what she’s figured out on her own. Good luck with your search. When you find them… please share their name!
Have you tried Dr. Pam Taub at UCSD? A lot of Ahern’s patients are switching to her. I saw her for the ivabradine study she did a couple of years back. She knew a little about POTS back then, but I imagine she’s learned more over the years. If your daughter is interested in ivabradine, she’s a good one to see. If you’re like me and ivabradine wasn’t helpful, she might not be the right fit.
I hear ya…doctors that understand POTS are still in very short supply, and the post-Covids are now adding to wait lists for the ones available. I do think if Pots was primarily a male issue, we would be seeing a lot more interest in the field. Sad & frustrating reality in medicine, they still don’t always take female issues seriously.
I recently happened to be talking to my new vascular Dr(about my TOS that is likely just neurogenic, but ruling out vascular)..and he mentioned he has 2 partner vascular doctors that see Pots patients! I usually see my neurologist for it. But I told them I’d be interested in their doctors, mostly out of curiosity on what they do with it…then I’m told that Iliac compression can often cause Pots. Apparently Mayo has been doing a study and these doctors are taking part of the study with their Iliac compression patients who have Pots symptoms. I found out earlier this year that I do have it after it’s seen on a MRI of spine, this vessel lies directly anterior to spine, and mine is clearly compressed.. but at that time I was told by former vascular Dr that they don’t do anything with it unless you have swelling or have a thrombus. So I pretty much forgot about it.
So after learning this new bit of Pots info, I’m going to see one of these vascular Pots doctors in Feb to see what his take is on my iliac compression. The nurse there told me that stents placed in iliac vein can help Pots symptoms quite a bit. So I’m keeping my fingers crossed! Maybe some real form of a cure.
I do still have my chronic EBV DNA elevated labs(I think I messaged you about that when you were looking into EBV).. and just found I am Immunocompromised by doing a lab called IgG subclasses(looks at all the IgG immunoglobulins). This lab can be abnormal even if your Total IgG is normal(which is often what drs look at-they rarely run subclasses from my understanding) .. I am very deficient in one of them. It’s a primary form of Immunodeficiency ..might sure explain why I haven’t booted out EBV in almost 5 years, my chronic ear infections, & why I am always run down easily energy wise. So now onto finding a Dr for that. I ordered that IgG subclasses lab on Ulta labs, so no need for Dr order..but will need a good immunologist to help now…relieved to slowly be finding answers!
I hope you find yours!
I do wonder, how many of us might have a compression of iliac vein…or even in another large vessel. Interesting stuff!
Happy New Year to you!
Very interesting about the iliac vein. After reading your comment I did some quick research and found a research study about pelvic venous insufficiency in POTS patients (https://pubmed.ncbi.nlm.nih.gov/32757696/ for anyone who might be interested). I volunteer on the Standing Up to POTS podcast, and we recently interviewed Dr. Steven Smith, one of the researchers listed on that journal article, about pelvic congestion syndrome in POTS – https://the-potscast.castos.com/podcasts/24166/episodes/e101-pelvic-congestion-syndrome-and-pots-with-dr-steven-smith. Seems like there’s something there.
Thanks for letting me know about the IgG subclasses test. I think I might look into that.
Happy New Year!
I had no idea this was going on over the pond. Why the hell are they not seeing POTS patients? Can they even legally refuse to treat recognized diseases?!
Over here, POTS is routinely being found in long covid patients so it’s something most doctors now recognize, even if they didn’t before Covid. We have dedicated NHS POTS clinics and have had for many years (only a handful of them but they do exist).
I hear you on the primary GP front though – they’re as rare as hen’s teeth here too.
x
Hi…yes, I believe the Iliac vein compression goes hand in hand with the pelvic congestion too, the nurse had mentioned that as well(for females). I’m looking forward to seeing what this vascular Dr thinks about my compression. I understand iIliac involvement to be more prominent in female Pots patients, but it would make sense regardless since the heart doesn’t get the blood return it needs in the case of compression, & tachy being the expected response….maybe a cure in using stents for some ppl, or at least great improvement… Fingers crossed.
Best of luck finding new doctors, Lindsay. I had a good GP who retired and I really miss her. She wasn’t perfect but she always listened to me and was a stable figure in my life for a few years. Goodness knows the tears I’ve cried since she retired. I didn’t appeciate her enough when I had her!
After a hellish few years searching, I now have an okay GP. She gets the job done without any drama, but I don’t feel a relationship with her. She is two hours away in the capital city where I used to live. All the good GPs here in the country have waiting lists a mile long.
I also have an okay dysautonomia specialist. He has his good and bad points, but we’re doing okay. It’s a minor miracle to even get referred to a dysautonomia specialist in Australia, so I’m sticking with him. He is pretty young so unlikely to retire and I imagine I and his other patients will knock him into shape given a few years.
It’s hard, isn’t it? It’s such a unique relationship – doctor and patient. It’s one of the most long-standing and intimate professional relationships we can have, often lasting longer than friendships or romantic relationships. I’m sorry to hear your GP retired.
Lindsay! I am sooo glad I stumbled onto your site! I’ve struggled with POTS-like symptoms for years but was always dismissed by doctors that it was probably anemia or dehydration or low-blood sugar. So I took iron, made sure I drank tons of water and always had some snacks on hand. It wasn’t until I recently read an article about long Covid and POTS that I had a totally validating aha! moment. The article spoke of the UC San Diego and Dr. Taub but they won’t take my (PPO!) insurance. So, I was wondering if you have found anyone at Scripps to see?
Hi Sara! Thanks for your comment. Your story actually sounds a little similar to mine – I had very low iron and was anemic for a long time, but taking large amounts of iron and getting my ferritin levels up (although I still struggle with that) did not improve my symptoms at all. It wasn’t until I was diagnosed with POTS and started treating the POTS that I saw any improvement in my symptoms.
I’m surprised UCSD doesn’t take your insurance, although Dr. Taub has a very long waiting list right now so even if you were able to get an appointment, it probably would have taken close to a year to be seen. Unfortunately, I have not found a new doctor at Scripps yet. I know Scripps is working on it, but I don’t think they have found a replacement for my former cardiologist yet. I did find a new doctor outside of Scripps that knows a little about POTS, if you’re considering looking outside of Scripps. You’re welcome to email me at lindsay@dysautonomiac.com if that’s easier than commenting here.