Too Old For Pots Eval At Mayo?

[flatout]

This is my first post, so bear with me.

I got dxed with hyperPOTS (noradrenaline standing measured 1950!!) this past January. I went through the mill trying to be dxed SOMEWHERE, all the major teaching hospitals in the mid-atlantic. One hospital told me, "oh even marines can be POTSY, it's no big deal..."

So found a local (less than a half mile from home) pediatric cardiologist who did the TTT, QSART, extensive bloodwork and has tried me on all the usual POTS meds. So far the only thing that helps a LITTLE is the clonidine patch. I have awful polyuria, vertigo, dizziness, vomiting, plus all the mast cell symptoms. (going to need to see Dr. Afrin I was told for that). But my triglyerides are over 800+. Started Lovaza three months ago no response (I used to take statins, tricor etc, but I'm one of those people who end up with Diabetes and muscle knots on those drugs, learned the hard way for ten years). Saw seven different endocrinolists for the hi-tris, poss Diabetes Insipidus, thyroid probs, got nothing. POTS symptoms not even sort of under control except BP/HR....Finally, my cardio pulled the trigger, said Mayo Rochester, go.

Mayo called two days ago giving me an appt in July way ahead of what we expected. However==They said you're too old for autonomic dysfunction evaluation, so we're going to put you in a holter monitior when you arrive, and you'll be seen in the heart rhythm clinic. I told them that my cardio's holter monitor's leads had not been put on properly and that two of them had come off and I kept trying to tape them on, but it didn't work and so the Holter results were not accurate, that my BP and HR are no totally controlled by my baby dose of clonidine but that I am bedbound for a year + now bc of POTS symptoms. Their reply, "the cut off is 50 for AD eval, and you're 53, sorry".

But here I am with hyperPOTS, noradrenaline over 3x the diagnostic criteria and everything else in the bloodwork, and I do have hyperPOTS even at 53! I was misdiagnosed for 22 years!!

So are there any of you who are "OLD" like me? Has this happened to any one else? I called Vanderbilt and they said yes, my doc could make the call, etc, that no THEY don't have an age limit but it would require multiple trips to the center etc and I needed to be aware of that, and their waiting list is over a year....

Advice? Experiences? Help? HELP!!

[Chaos]

Sounds like a miserable situation all the way around for you. So sorry to hear of all that you are having to deal with!

I was seen at Mayo in Scottsdale so don't know how they do things in Rochester. It would seem like if you got there and had symptoms the docs should refer you to the appropriate other physicians for work-ups- that's what they are good at doing- but if they won't accept anyone for a AD eval over the age of 50 then I wonder if you would be referred once you were in the system? That just seems really weird to me!! I can certainly understand your concern with going and spending a lot of money and time and getting nothing out of it however. Hopefully other people who have been to Mayo Rochester will chime in with their experience about how it worked when they were there. I wonder if you called and got another registration person if you might get a different answer.

Other options might be Vanderbilt- like you said, or Cleveland Clinic, or Blair Grubb, or Dr Thompson down in Florida (who has POTS himself). I mean, if you're going to travel anyway, might as well go where they will do the work-up you need to get done. There may be long waits for any of the above places, but if you can ultimately get the appropriate work up done that might make it more worth-while in the long run.

Re-reading your post however, it looks like you've had a lot of the diagnostic tests that they would do with an autonomic dysfunction test. Q-sart and catecholamines etc at least? You already have a hyper-POTS diagnosis so what is your cardiologist hoping to get out of a trip to Mayo? If it's a more thorough work up by several different specialists (cardio/endo/neuro/etc) all at once, Mayo may be the place to go.

If you show up to Mayo with a hyper-POTS diagnosis on your chart, I wonder if they wouldn't want to verify that for themselves as they frequently want to do their own testing and don't accept other places' results. In order to do that, it would seem that they would have to do an autonomic screening so you might just get referred for all that anyway. What Mayo is usually really good at is getting you in, assessing what is going on and then arranging for you to see all the various specialists that would be appropriate for your condition. Once you're in the system, it might be different than trying to get in from the outside, but I'm just guessing here based on my experience at Mayo Scottsdale. Guess it's a good thing I got in 2 years ago before I hit their cut off number. Yeesh!

Good luck! Hope you find some answers. Welcome to the forum.

[Rachel]

I have never heard of a cut off age for autonomic testing at Mayo. That seems quite odd. I wonder if the person you spoke with was misinformed.

When I was at Mayo my husband spoke with the family of an older gentleman (70s maybe?) who was being seen in the autonomic department. He saw Dr. Fealey, just like I did.

Dr. Fealey mentioned to me that they do the sweat test (one of Mayo's autonomic tests) on elderly people. At 53 you certainly aren't old enough to be considered elderly!

I wonder if maybe there is a cutoff age for the 1 week POTS evaluation program that they do, but that you could get in to see one of the neurologists in the autonomic department. I know there were people there who were older than 50.

I hope that you will be able to find the help, testing, and treatment that you need.

[flatout]

they told me the cut off at 50 is new. Yes, had catecholamines, everything done by my pediatric POTS doc. But the clincher for mayo it seems was the dubious Holter monitor. I was really surprised that my explanation for why it looked odd meant nothing to them. They're convinced I have a heart rhythm problem, but none has been seen through my two cardios ever ever. I wear the wrist monitor day and night (in bed all the time anyway) and record my BP heart rate every 15 mins! Nothing odd as long as the clonidine patch is on. They warned me when I made my initial call that all they do is confirm dx. But I was very surprised that the woman who called made such a remark as "oh you probably don't even have POTS, lots of people think they do, but they don't." I've been though endocrinology at all of the major teaching hospitals around here for a different explanation for the super high catacholamines, noradrenaline etc, the things typical of hyperPOTS and keep getting sent back to my cardiologists (I have the POTS one, a pediatric, and the regular one who said, this is POTS a year+ ago...frustrating.

[flatout]

BTW, maybe some one can confirm this, but DH found online that Dr. Grubb has a serious family illness he's dealing with and is pretty much not seeing patients currently and for some time, so his waiting list is at a standstill. My own pediatric cardio knows him and told me not to hope for Dr. Grubb.

[Rachel]

By the way, I was just at Mayo last month, and there were elderly people there in the autonomic department at that time.

[Christy_D]

Flatout,

My son was tested and treated at Case Western University Hospital in Cleveland by Dr Thomas and Dr Gisela Chelimksy(husband/wife team). We thought they were great. They have now moved to Medical College of Wisconsin. Dr Thomas Chelimsky might be worth looking into (his wife is pediatric). Here are some links with info:

http://www.mcw.edu/neurology/divisions/adult/specialties.htm

http://www.mcw.edu/neurology/faculty/ThomasChelimsky.htm

We also took my son to the Mayo in MN, I wasn't impressed, but it was the pediatric dept.

Christy

[Tachy Phlegming]

I think what you were told is abominable.

Please erase this entire post however.

I am very careful about what I write and I would not want to be quoted as having written "I think I would try again" in this type of situation. I didn't write that and I wouldn't respond that way.

[Katybug]

Maybe you could convince your local cardiologist to call Mayo and plead the case on your behalf? Fwiw, I think this age limit is a load of bunk, too. The only thing I can think of is that as we get older we are more prone to orthostatic intolerance ....but that's no reason to not treat it!

[flatout]

I was misdiagnosed as bipolar/anxiety disorder after my son was born in 1990. I kept describing how my heart was racing, felt faint etc. the usual POTS symptoms. When I got sick last year (we didn't know I had an immune deficiency then, CVID, bc my primary said that my saying i had chicken pox twice as a child was 'ludicrous") my treating doctors told me to get off all my psychiatric meds. I did no problem. Surprise, months later I was still totally asymptomatic for anxiety and bipolar. The psychiatrist I was seeing had not dxed me, I was living somewhere else at age 31. My husband had maintained for years that it was a misDX. But the benzos seemed to help with the cardiac symptoms and the other things helped a little with the brain fog.

I never considered that I was unusual in anyway (connective tissue disorder not identified until last fall, never knew being so bendy was 'different' can put my foot around my neck, etc had nephews and first cousins with Marfan's, but I got osteoarthritis and osteoporosis so young that no one ever asked if I could do my parlor tricks..) so I never said, hey watch this...so no one considered ANYTHING beyond psych diagnoses.

I just kept going around and around for two decades+. I was sick all the time, strep 10-15 times a year, yeast overgrowth the same. I had all these weird injuries and docs would write "trauma" and I'd cross it out and say, no truama!! Finally a doc in my pain doc's office asked when was I dxed with EDS? I said what in the heck is that? That was the first domino. I've been worked up for so many other things, you all can't imagine. My sons and husband took me to sometimes 10 doctors a week last year trying to find out why I was vomiting, all the way to Hopkins over and over and nothing to show for it. Getting horizontal 24/7 ended my 60+ lb weight loss at last. It's been awful.

It was only after the CVID dx last fall that things started moving away from psych dxs. Saw the geneticist in Balto the same week....

The mast won't be a surprise either bc I have always had "low-flying" allergies. Didn't show in blood, but showed on skin, "oh that's dermatitis.." so on. I had been on the z/z for literally years but was bullied off of it..now I'm back on while I wait for the ketotifen to come...I kept saying to docs, "I keep blacking out" but my brother had died of brain cancer so they CTed my head over and over (lots of nice contrast).

Honestly, having lost only a year I know is mild compared to what many of you have gone through.

It's not so much getting "re-diagnosed" that is my priority. It is getting a treatment plan. There is no autonomic function doctor around DC where I live that is not a pediatrician. My doc knows them all, but he's at a loss about how to try and get me upright, "among the bipeds." We don't know why but midodrine didn't work on me, and the compression stockings make my small fiber neuropathy worse (years on statins gave me diabetes, the diabetes gave me the neuropathy? not sure. Went off the statins, blood sugar normalized...) If I'm upright for even 5 mins over I go, so we take me to docs in our tricked out, keep me horizontal van. We keep adapting, but I never see improvement.

My doc thought that Mayo would try and unwind the theads of my disorders. He spends (he told us) about five hours a week combing through my records, looking for anything that matches anything in the existing literature. He thought that Mayo being all about research as well, would just LOVE to get their hands on an outlier like me.

But I am an outlier even among outlier's diseases/disorders. My doc said he will try to call, but how long can I expect him to keep advocating on my behalf when no one wants to even evaluate me? I've been blown off by some of the biggest names in the country. You all would be shocked I think if I told my whole story....

My last remaining doctors were concerned about me making the trip to Mayo even bc of the distance, bc I end up in the pain doc's office every time we go to Balto! So how was I going to make the drive to Rochester? Husband's plan was to rent a Winnebago to make the drive....so as wonderful as Wisconsin sounds it would be even further. Vandy is closer by a little.

Sorry sorry to run on like this. I don't get to "talk" very often...

[diabeticgonewild]

Maybe an administrator from Mayo could be called.

[kitt]

Flatout,

Am sorry you're going through this.

I'm confused but trying to understand.

You say: Pasting....

"But the clincher for mayo it seems was the dubious Holter monitor."

So did Mayo have your records in hand when they denied you for a dysautonomia eval?

I've never known Mayo to ask for records prior to a visit. Only a referral.

Can you share how all that came about? The holter monitor data. How did they happen to have it?

I'm very sorry you're having this experience.

I've been to Mayo in many times and have never heard of anything like this. I'm confused, but trying to understand this dilemma.

Thanks for sharing,

K

[Joann]

Just wanted to chime in, my friend just saw Dr. Grubb this past month, so he is in his office. He may not see as many people as before. I know there are health issues in his family. But his assistant Beverly , is seeing people also. I have been told that he will consult with doctors over the phone if they call him for help.

Your doctor could try calling him to see if he would review your tests and give your doctor suggestions.

Again, that is what I have been told. I asked the nurse at my cardiologist office, if he still did that and she said no. But my friend who went recently, said she called Dr. Grubbs office and they said he still did.

[bustersacc11]

Here is my two cents regarding this post. One, it goes totally against Mayo’s clinic mission and values as a world renowned health care destination place. It’s primary value states the needs of the patient come first.

Like Rachel, I was just there. I saw patients well into their retired years getting autonomic function tests. Specifically, I recall a man clearly in his late 60’s just completely the thermoregulatory sweat test. If this is true it was just implemented over the past few weeks.

What would happen if I went there for initial evaluation done by cardiology or some other specialty and they believe it is possibly dysautonomia. They put in a referral but I get told “nope” your 50. This is just baffling to me and makes no sense.

From my experience the only way to clear this up is on the same lines as what diabeticgonewild stated. For me, I would specifically bypass neurology and go straight to Patient Affairs and explain to them what I was told, by who, and request clarification along with an explanation if this is true. If this is not true, what do I have to do in order to be seen by one of the autonomic doctors. Make sure whoever gave this false information is corrected.

[flatout]

My cardio told me to call Mayo's POTS clinic, they asked me to fax all my records which took me a whole day to collect. I scanned and faxed them, everything including the ancillary tests and results (CVID, ICTD, etc). They told me they would review them, the lady told me to call every week which i did. They kept tellling me 6-8 months, then 8-10 months then the news that I was too old for AD eval....

They didn't ask for a referral from my doc, jsut the records from everyone.

When I asked why wasn't I informed of the age cut off, she said it was new, that POTS was a young person's disorder, I probably had been misdiagnosed...I asked did they actually see my noradrenaline levels, catacholamine levels, QSART, on and on. She said maybe I should go to Vanderbilt, but didn't say I COULDN"T come to Mayo, jsut that they were going to evaluate my heart rhythms, which have been determined to be normal. Told me that I would wear the holter for a day, "doing my normal activities" (I said, "laying in bed and vomiting, going to the loo?") and then on Wednesday I would see the doctor and be cut loose on Friday....

so frustrating. I see all of you all's troubles getting misdiagnosed and all, but I can't think what's left to be misdiagnosed...do noradrenaline levels lie? I've seen 7 or is it 8 endocrinologists at the big teaching hospitals and they run all manner of tests but only the ones my dxing cardio did were orthostatic tests. Standing bloodwork and urine, supine bloodwork and urine and so on...

[Rachel]

Please keep this in mind while posting. Thank you!

Doctors and Hospitals

You agree to refrain from making disparaging remarks about hospitals or medical professionals on this forum and to refrain from naming doctors or hospitals when elaborating on negative experiences.

Clarifications: It is fine to make a general statement, such as "I had a negative experience with Dr. ____ ," however, per forum rules, statements naming a particular doctor or hospital cannot be defamatory in nature.

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You may elaborate on negative doctor or hospital visits as long as the particular doctor or hospital is not named, and therefore not defamed.

[Lethargic Smiles]

I wonder if it has anything to do with them being really into doing POTS research. Maybe their research reports only include people under 50? That still doesn't make any sense as to why they would refuse to do autonomic testing for you... I would think they just would say you are not eligible for their research. I don't see why whether or not your results can be used in the research should have anything to do with the testing and care you recieve.

[flatout]

Update: My cardio called Mayo Rochester to confirm the age cutoff. They did tell him I was over 50 so it's not possible for me to be seen in the POTS clinic there. This is NEW they told him. I can't say who exactly he talked to, just know that he called and told me he spent an hour on the phone. He called me back the afternoon he talked to Mayo.

To clarify: I am not disparaging a Medical System. I can't change whtat was told to my doc and to me. It is what it is. I am jsut trying to get advice.

Mayo told my doc that I MIGHT get autonomic testing re-done, they acknowledged taht they have all of my previous tests in hand and that they were reviewed by an medical team (though they did not tell my cardio what the specialty of the reviewing team was so there's a question there), but told HIM that their new focus in the POTS clinic is on patients under the age of 50. It is totally up to the descretion of the ONE doctor I will see, again, THEIR words, not mine or my doc's.

That does not mean that the doctor I see will not refer me for autonomic testing, only that their focus will be my heart rhythms, which baffles my doc as the heart rhythms and function aren't thoguht to be a problem. My doc beleives since the noradrenaline levels were over 1950 that Mayo would see a published paper out of a case like mine. He is no slouch on my case, but his knowledge is limited because he is a pediatrician. He advocated for me as "an outlier needing a tretment plan for hyperPOTS" his words not mine. BTW I have had the sweat gland biopsy done already, but not the other sweat test I have seen others refer to, but have many other tests from Hopkins and George Washington and a few at Georgetown. Maybe I have so many tests in hand already that AI tsting would be redudant? That 's what wer'er hopig at this point.

For those who are wondering about hte referral vs. self-referral at Mayo, I'll just give you my experience. My cardio has sent over a dozen patients, all teenagers to Mayo in the past two years. They all self referred. You call, and they conect with a scheduler who asssigns a "temporary Mayo patient number" to you and you label all your records with taht number and fax them.

Vanderbilt requires taht you r doctor call then fax a kind of worksheet/intake for your case then they contatct you, the patient and you fax the rest of the records to them.

I don't know if this is typical, this is just what they had me do.

Again, I simply googled "Mayo Rochester POTS" and found the number the day my cardio told me too and that's how it happened. If that is different from everyone esle I don't know how to explain it. I'm not being critical, I'm just recounting how it happened.

My cardio has masde the first steps for Vanderbilt and we are going to make the trip to Mayo. My cardio hopes that when they see me, they'll see just how unusual I am and go from there. He thinks it's a gamble but worht it.

The wild card here is that my neuro symptoms are much worse recently. I have had vertigo for a month, but it is not vestibulitis or anything similar. Alos am typong slow ly because my left arm is now limp, and the bones inside it hurt. Mast? My pain doc thinks so, but prostaglandin D2 and urine methylhistamine tests still pending...

Thanks to all fro your issights adn help. excuse the typos.

[Christy_D]

When you say the 'POTS CLINIC' are you referring to the PRC(Pain Rehab Clinic that focuses on POTS)? It is separate from the autonomic testing/specialists.

[Poohbear]

The POTS clinic is not the same as the Pain Clinic at Mayo ....two totally separate clinics at Mayo. POTS clinic is part of the Autonomic division in neurology.

[Christy_D]

Got it, my son went through the PPRC(Pediatric Pain Rehab Clinic) where 80% of the kids had some type of autonomic dysfunction/POTS and only 20% had a pain issue.

[kitt]

Flatout,

Quoting from your post:

we are going to make the trip to Mayo. My cardio hopes that when they see me, they'll see just how unusual I am and go from there. He thinks it's a gamble but worht it.

I think that's a wise decision. Think you'll be well cared for and I do think 'it's worth the gamble' as you say.

Don NOT believe they will examine you, find hyperadrenergic pots, and then not do a through evaluation.

The pots clinic is indeed separate from the pain rehab clinic. It's a 5 day process for pots patients, and Mayo only takes a specific number of pots patients through the pots clinic per week.

Good luck Flatout. Thank you for sharing, and I wish you the very best,

K

[Lethargic Smiles]

I'm thinking of you!

[Guest wishing&hoping]

Update: My cardio called Mayo Rochester to confirm the age cutoff. They did tell him I was over 50 so it's not possible for me to be seen in the POTS clinic there. This is NEW they told him. I can't say who exactly he talked to, just know that he called and told me he spent an hour on the phone. He called me back the afternoon he talked to Mayo.

To clarify: I am not disparaging a Medical System. I can't change whtat was told to my doc and to me. It is what it is. I am jsut trying to get advice.

Mayo told my doc that I MIGHT get autonomic testing re-done, they acknowledged taht they have all of my previous tests in hand and that they were reviewed by an medical team (though they did not tell my cardio what the specialty of the reviewing team was so there's a question there), but told HIM that their new focus in the POTS clinic is on patients under the age of 50. It is totally up to the descretion of the ONE doctor I will see, again, THEIR words, not mine or my doc's.

That does not mean that the doctor I see will not refer me for autonomic testing, only that their focus will be my heart rhythms, which baffles my doc as the heart rhythms and function aren't thoguht to be a problem. My doc beleives since the noradrenaline levels were over 1950 that Mayo would see a published paper out of a case like mine. He is no slouch on my case, but his knowledge is limited because he is a pediatrician. He advocated for me as "an outlier needing a tretment plan for hyperPOTS" his words not mine. BTW I have had the sweat gland biopsy done already, but not the other sweat test I have seen others refer to, but have many other tests from Hopkins and George Washington and a few at Georgetown. Maybe I have so many tests in hand already that AI tsting would be redudant? That 's what wer'er hopig at this point.

For those who are wondering about hte referral vs. self-referral at Mayo, I'll just give you my experience. My cardio has sent over a dozen patients, all teenagers to Mayo in the past two years. They all self referred. You call, and they conect with a scheduler who asssigns a "temporary Mayo patient number" to you and you label all your records with taht number and fax them.

Vanderbilt requires taht you r doctor call then fax a kind of worksheet/intake for your case then they contatct you, the patient and you fax the rest of the records to them.

I don't know if this is typical, this is just what they had me do.

Again, I simply googled "Mayo Rochester POTS" and found the number the day my cardio told me too and that's how it happened. If that is different from everyone esle I don't know how to explain it. I'm not being critical, I'm just recounting how it happened.

My cardio has masde the first steps for Vanderbilt and we are going to make the trip to Mayo. My cardio hopes that when they see me, they'll see just how unusual I am and go from there. He thinks it's a gamble but worht it.

The wild card here is that my neuro symptoms are much worse recently. I have had vertigo for a month, but it is not vestibulitis or anything similar. Alos am typong slow ly because my left arm is now limp, and the bones inside it hurt. Mast? My pain doc thinks so, but prostaglandin D2 and urine methylhistamine tests still pending...

Thanks to all fro your issights adn help. excuse the typos.

Hi, Flatout

Sounds like ur in the DC area as am I. Just wondering if you can pm me re ur docs as I am still looking for good ones who aren't scared of this and take insurance. Where is ur cardio if I may ask? Mine is impossible to get into and d/n follow me closely enuf and I've had contradictory advice between her and Grubb re EP intervention/ablation. So sorry ur also getting the runaround. We're in the same age bracket. My palpitations are getting worse and are scaring me due to horrible family history.

Thanks,

[lynnie22]

Hi Flatout,

I'm coming to this a bit late. Good luck on your trip to Mayo. I was there three years ago, self-referred. None of my doctors nor I had a clue what was wrong with me but suggested I go there. Self-referred luckily landed me with a cardiologist who did all the testing for POTS, even though I wasn't in that clinic. That rule is very disturbing, since so many of us are over 50, I am 64 and would never have gotten tested unless I landed with a good doctor there. I don't understand their rule, but I imagine if you have a couple of appointments with a POTS savvy cardiologist and neurologist set up beforehand, I can't imagine they aren't obligated to follow up with the right tests. Besides POTS I recently got diagnosed with idiopathic peripheral autonomic neuropathy which seems to be reserved for the 60 plus group--it necessitated most of the same tests.

So sorry for your frustrating experience.

By the way once I was tested, they then needed a doctor here to send all the results to, but self-referred is good, as long as you know who you're seeing.

Anyway, good luck again. and hope you find a way in to get the help you need.