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Doctor Problems - Pots


addie13
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Hello all! First let me introduce myself as I'm new here~ You can call me Addie and I'm 21 years old. I was diagnosed with POTS in April of 2014 after passing out while driving. Thankfully I was at a stop light! But it started a whirlwind of upsetting events and I had to quit my job because of it. Things are finally starting to look up, however, and I'm back in college with another job that requires me to sit the entire time.

I have a question, though! I have a doctor who doesn't know what POTS is nor did they even know what Celiac was (I'm also diagnosed Celiac). She tried to tell me that Celiac, Gluten Sensitivity and Allergy were one and the same. I was a fool for believing her and am very glad I learned differently!

She doesn't know what POTS is either, and unfortunately many don't but she's proven to not be the best help for me. I've had a lot of problems with this doctor's office but I can't afford to go anywhere else because this is only where my insurance covers.

How could I go about finding a doctor that knows about POTS or is at least willing to learn about it to work with me on it?

Also, does anyone know if or think POTS could be linked to Celiac Disease? I had a bout of Pancreatitis when I was 19 (so November 2013) and then it was in January of 2014 that I had my first real episode of POTS. I feel like I always had it, though, to a small degree and that the Pancreatitis pushed me over the edge.

I just figured it wouldn't hurt to ask your opinions and advice!

Thank you and I'm happy to be able to find a forum that can sympathize!

- Addie

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Hi Addie!

Who diagnosed the POTS? Is it possible to see that doctor again?

As to whether Celiac can cause POTS, I don't know for sure. There is quite a bit of overlap between those with POTS and autoimmune diseases such as Celiac. I'll see if I can find some information for you.

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gjensen, I'm taking salt tablets right now and that's about the extent. They tried me on some of the blood pressure medications but they made me really, really sick. I'm waiting to talk to my psychiatrist, though, about going onto an SSRI but we're concerned that will be bad for me given my current mental health diagnoses.

Katybug, Thank you so much for your input! I really appreciate it and I never knew there was a lot of overlap between the two. I'm not familiar with it and anytime I try to look it up, I can never find anything on the subject.

As for who diagnosed me, it was a doctor at a hospital. My diagnosis journey was utterly awful, as I've found many people have experienced. I'll try to keep it short, but I passed out while driving and we saw my PCP. She ran a total of two tests (one was to check for blood clotting and the other was to measure my adrenaline) and then told me it was anxiety. I insisted it wasn't because I've been seen by a psych since I was four and she said she wouldn't continue looking until I talked to him. My psych told me I sounded like I had POTS and we tested it in-office as best as we could. He sent me back to my PCP who referred me to a cardiologist who insisted I just needed to "exercise" more and strongly insisted I couldn't possibly have POTS. I demanded he check the symptoms and he had the nurse do it. He came in and said I was displaying the symptoms of it then prescribed me salt pills. HOWEVER, he called me afterwards and said he wasn't comfortable having me take the salt tablets without enough "evidence" to support something was wrong. Then he wouldn't renew my doctor's notes to excuse me from work.

My psychiatrist suggested I visit our state's Faint and Fall clinic (which is a unique clinic. They only see you for initial treatment and diagnosis then pass you back to your PCP) and we were prepared for a full day of testing but within the first hour of being there they did the orthostatics and the doctor came in, diagnosing me on the spot. He said we could do the tilt table test but it'd really only be a confirmation and we didn't want to have to pay the extra money for that.

So, long story short, I unfortunately cannot see them again and I need to find a doctor who can work with me on my current medical problems. ):

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Hi Addie,

Here is a link to our physicians list to get you started on looking for a doctor. If you can't find anyone on there that will work, sometimes it is helpful to start a thread titled something like "Need doctor in Maryland" (or whatever state/city you are in. We may have a member that lives near enough to you to suggest someone not on the list. Haven't had a chance to look for the other info for you yet but I haven't forgotten.

http://dinet.org/index.php/physician-list?view=physicians

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I will try starting a thread like that, as I looked for my state on that part of the site a little while ago and couldn't find anyone. ): Thank you so much for the suggestion and help! I really appreciate it!

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Hi Addie! Just a lil note. I believe I did read something about celiac and pots but I have no idea where that was. I know the gut plays a large part in our autoimmune processes. Malabsorption can also be an issue. I guess I am being looked at for autoimmune pancreatitis currently. I do not test positive for celiac though.

It sounds like it has been quite a ride for you just in getting a proper diagnosis of Pots. God Bless. I hope you find the support you need here. It has been very helpful for me!

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Thank you, Raisin! I really appreciate it. (: And wow, I wonder if my pancreatitis was linked to all of this too. I mean, we figured it was probably tied to my Celiac but I'm not sure. I really hope you get some answers soon! By the way, I don't know if you know this, but Celiac can produce false negatives. A long time ago I was tested and I had a false negative too. It wasn't until it got REALLY bad that it finally tested positively.

Thank you, Katy!!!! Those look really interesting! I'll read through those when I have more time as my aunt's on her way over. ^_^

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Hi Addie, you've probably looked into this but I wonder if the clinic that diagnosed you would have any doc names for you? I'd also think about calling the cardiology or neurology departments of hospitals in your region...maybe rheumatology or immunology too? There are some POTS specialists who do phone consults. It'll be a big help to find a doctor who will work with you on it. Hang in there...sounds like you've been pretty tough already!

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Addie,

Random question. Did you faint in WA? I actually saw someone unconscious at a stop light. Went and parked my car to run out and help them, but by the time I got there, they were gone!

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wrtierlymom, Thank you so much for the reply! I appreciate it! I have checked with them, but unfortunately they weren't able to help very well. I'm trying to find other resources but we just don't have a lot of money to spend on doctors right now. It's really unfortunate. ):

lemon, I have never been to WA so it was someone else! I do want to move there, though! Haha. (: I hope whoever it was is okay.

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Hi Addie. Sorry to hear you can't find a good doc right now. Hang in there. One thing I've learned with this illness is it takes a great deal of patience. I don't know where you live but I know that here at the Cleveland clinic, they have programs that may pick up the tab. You have to speak to a financial counselor. Just a thought.

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