Mayo Clinic New Article - Released 11/02/12

[Katybug]

I think anything the docs can't prove with a test the moment you are sitting in front of them is often ruled "in your head" especially for women (no offense to the men...you just generally aren't accused of being hormonal). For example, my mother suffered for more than 10 years with her Hashimoto's symptoms but the blood tests for free T4 and TSH were coming out borderline and the antibody tests were negative. We have a strong family history of autoimmune thyroid disease. She was labeled with all kinds of things

..most of these were not very flattering. She kept pushing about trying thyroid treatment. Here we are years later and an integrative doc finally dx'ed her. By today's standards her levels were well outside of normal. But she was treated horribly for years, all the while having a known autoimmune disease, because the blood work wasn't just right. I've had docs tell me to keep in mind that a blood test is only a snapshot of that exact moment in time, as are most diagnostic tests. I always wonder why most docs don't seem to remember this.

[kitt]

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[arizona girl]

Katy, that is exactly what happened to me. Been testing me for years for thyroid disease and told I was normal inspite of thyroid nodules and classic symptoms. My tsh was normal, so I couldn't have thyroid disease!! Well a rheumy working me up for sjogren's did a tpo/ab antibody and low and behold they were elevated. My endo started treating me and we are still working out dosage, it is not right yet in my opinion, but it has only been six months. I have though lost some weight.

My experience with azmayo was fairly poor and it was apparent to me that they have a hard time letting go of diagnostic standards that have been proven outdated. An endo I saw there years ago undiagnosed me with pcos, that had been well documented by several local endo's, fertility doctors and was supported by diagnostic ultrasounds and documented hyperinsulinemia.

Mayo had not come to the place and accepted that other medical research had proven that pcos was a result of elevated insulin; which in spite of treatment, though better, is still elevated in me. I've been treating this for years with glumetza by another local endo. Thank goodness I was smart enough to consider his opinion wrong.

It is important to remember a doctors diagnostic opinion is just an opinion and many times another doctor looking at the same diagnostic medical results will come to completely different conclusions. This is why it is very important to trust your own truths and instincts. After all aren't we the best experts on ourselves.

[southbel]

It is important to remember a doctors diagnostic opinion is just an opinion and many times another doctor looking at the same diagnostic medical results will come to completely different conculsions. This is why it is very important to trust your own truths and instincts. After all aren't we the best experts on ourselves.

I would love if that were true for all doctors but I have seen doctors that treat Mayo's opinion as 'gospel'. That is my primary concern with an article.

[arizona girl]

Agreed, I think that is why we all are particularly upset that this would get out to nonmayo doctors who don't have the background to challenge this guys hypothosis.

He is just a researcher, I looked him up. I don't even know if the guy sees real patients. Many of the articles he has sighted, even by Dr. Low who he has worked with don't support his conclusion. It is also interesting that he is on this article alone, without low or anyone else. He may be getting paid to give an opinion, as he has many citations on all kinds of different medical conditions. You can see what he has written about under his mayo bio, which says he's a researcher.

[ladyt]

I see from the respons here that my english is not as off as i think it is. I try not to be offended When psykosomatic conections is mentioned, cos i think that can be a part off all illnesses. Like of u gett any life chanching illnes u will be efectet in many ways. But what offends me is the hidding behaind it docs do. Like it all in Your head, and u are resposible for Your one health....

And like we inn here ,many People have pots for many difrent resons.

[southbel]

So pretty much, this article is blaming the patient. Can't figure out why we have POTS or how to treat it effectively?? This researcher's answer is to blame the patient (e.g. deconditioning, psychosomatic, hypervigilance, etc). I find that abhorrent.

[Chaos]

Southbel- in answer to your previous question, YES...I believe MS and Parkinson's were both thought to be psychosomatic in nature originally. I know my husband's grandfather had lead poisoning which led to cancer but he too was told "it was all in his head" (and put in a psych hospital)...until a couple weeks before he died.

[HopeSprings]

I would love if that were true for all doctors but I have seen doctors that treat Mayo's opinion as 'gospel'. That is my primary concern with an article.

Yes and not just Doctors. When I met with my SSDI attorney we were talking about submitting articles about POTS to educate the judge and she said she usually pulls articles from Mayo. I kind of chuckled and said, "NO, don't do that." She was like, really? I told her I would find her some good articles. And what Kitt said about CFS.. I remember reading about this in Osler's Web. According to that book, they treated CFS patients very poorly in the 1980's. Sad to hear the same might be true today with all that is now known about the illness. Even the FDA has recently said it's a serious and life threatening illness.

[kitt]

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[arizona girl]

FYI, I didn't say he didn't see patients, I said he may not see patients, as he is a researcher. He may see patients during an active study, but I didn't see that he was part of one.

What is important about his review of the research studies, is that it doesn't include dr. grubbs published articles and it doesn't include the psych study done at vanderbilt that showed anxietly and depression were no more common in our population then the community at large. Also, while pots is a syndrome, dysautonomia which pots is under is not considered a syndrome.

Which could explain why some of the larger medical centers are studying it. We do have access to this doctor's e-mail. Perhaps in a polite manner, some of us could let him know the flaws in his research, maybe we can turn him to our side.

[HopeSprings]

Ha! How funny you both should mention Dr. Grubb! - It was HIS article on POTS that I gave to my attorney.

[brethor9]

I agree with Arizona Girl.....maybe if everyone on here started flooding this doctor's email with our own opinions of an illness WE have to live with everyday he may rethink his very inaccurate research of dysautonomia/POTS. Doctor's like this do so much harm to an already fragile understanding of this syndrome....I really wish they would stop with the "I don't understand it; therefore it doesn't exist mentality"....

Bren

[kitt]

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[arizona girl]

No worries Kit, just didn't want to misinform anyone. His e-mail address link is at the top of the article.

Who thought you were a male?

Yes, I'd say Dr. Lowe is the lead dysautonomia doctor there, that is why I found it interesting that Lowe's stamp wasn't on the article. I had several doctors say I needed to go to lowe, he wasn't on my insurance, but Vanderbilt and Dr. Grubb were so I saw them, both were a very long wait though.

As I said before I do think politely letting the doctor know our thoughts on his article and asking him why he hadn't included grubb's articles or more of vanderbuilts, certainly couldn't hurt. The trick is to get him to hear us without him digging his heals in.

[HopeSprings]

I agree with Naomi that polite emails to Dr. Benarroch are in order. His email is somewhere on the Mayo website...Am too brain-fogged right now to find it, but they are usually very available.

I can't take credit for this - I never suggested e-mailing anyone, but I don't disagree...

[peregrine]

I went ahead and looked at his publication list on PubMed. Some interesting things - he really has focused mostly on MSA, with 20 papers discussing many aspects of it. Past there, he's looked at a few other autonomic issues (I didn't break them out, but only one paper for each thing, 9 total), ANS testing (4 papers), orthostatic hypotension (2 papers), and basic research (5 papers, stuff that's not directly clinically relevant or doesn't involve humans). He also has 4 papers on POTS:

http://www.ncbi.nlm.nih.gov/pubmed/8902319 - "Certain cardiovascular indices predict syncope in the postural tachycardia syndrome."

http://www.ncbi.nlm.nih.gov/pubmed/7746369 - "Postural tachycardia syndrome (POTS)."

http://www.ncbi.nlm.nih.gov/pubmed/22993288 - "Deconditioning in patients with orthostatic intolerance." (which found that 95% of POTS patients are deconditioned - "deconditioning is present in almost all patients with orthostatic intolerance and may play a central role in pathophysiology.")

http://www.ncbi.nlm.nih.gov/pubmed/23122672 - "Postural Tachycardia Syndrome: A Heterogeneous and Multifactorial Disorder." (this paper)

I... the guy clearly has a big background in MSA, which is awesome. But I am also nervous about the fact that he fails to cite many other POTS authorities - only two Grubb cites - and one of his four POTS papers says that everyone is deconditioned, so everyone should be exercising. I'm a big fan of exercise for POTS if folks are able to do it, but (1) it doesn't work for everyone and (2) it perpetuates the myth of the POTS patient as a former couch potato who suddenly starts feeling cruddy because they're a lazy slob. He really doesn't seem like he has the background to make the kind of sweeping statements he makes here, especially since he doesn't cite the folks who've been working on this for a long time. Grar.

[kitt]

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[kitt]

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[ramakentesh]

More recent findings suggest a large portion have acquired NET deficiency but not bad.

[anna]

I still find the article lacks something, now I am reading the article from the angle of an EDSer, with symptoms of ANS dysfunction, that has 3 children with the EDS and very odd ANS stuff going on.

I found that the article is a tad unhelpful:

"Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome (EDS) is a heterogeneous dis- order that includes several forms, all linked to se- quence variations in genes encoding for fibrillar pro- teins and/or collagen processing enzymes leading to reduced structural integrity of connective tissue. Joint hypermobility, which is characteristic of EDS type III associated with sequence variations in tenas- cin X, has been frequently associated with POTS.47-49 However, the mechanistic relationship between these 2 entities is incompletely defined. Whereas tenascin X sequence variations affect car- diovascular tissue leading to valvular disease,50 the hypothesis that impaired integrity of vascular con- nective tissue leads to impaired venous return and secondary orthostatic tachycardia has not yet been convincingly tested. EDS III is also characterized by early onset of chronic pain, particularly in the shoul- ders, hands, and knees,51 which may be disabling due to associated anxiety, depression, and a somato- sensory amplification state52; this may lead to sec- ondary hypersympathetic responses triggered by fear of pain on standing."

the hypothesis that impaired integrity of vascular con- nective tissue leads to impaired venous return and secondary orthostatic tachycardia has not yet been convincingly tested. It is true it has not yet been convincingly tested but does not mean it will not show up when tests are done just that they have not found the tests to give light to this theory. From what I have read such testing would be possibly proved post-mortem but I can not find any research on EDS done on tensile integrity of non vascular EDSers vasculature.

this may lead to sec- ondary hypersympathetic responses triggered by fear of pain on standing.

Why not include the research coming out of Europe:

Mild to moderate neuromuscular involvement is commonly present in various types of EDS, with a remarkable relation between residual TNX level and degree of neuromuscular involvement, compatible with a dose-effect relationship. The findings of this study should increase awareness of neuromuscular symptoms and signs in EDS patients and improve clinical care. It also points to a possible role of the extracellular matrix in muscle and peripheral nerve function. Neuromuscular involvement in various types of Ehlers-Danlos syndrome

Adapted from:

Voermans NC, van Alfen N, Pillen S, Lammens M, Schalkwijk J, Zwarts MJ, van Rooij IA, Hamel BC, van Engelen BG. Ann Neurol. 2009;65:687-97.

Surly having inherently poorer functioning musculature than a 'normal' person, backs up the theory of poor muscle pump in EDSers with POTs symptoms.

[ramakentesh]

Most doctors involved in the research are very impressed with the research on acquired NET deficiency from Australia. Certainly its almost established that many POTS have acquired NET deficiency.

[kitt]

Anna,

Are you familiar with the work of Dr. Rowe at Johns Hopkins? He has devoted a great deal of study to children with ED/pots/ CFS.

On the day I was dx with POTS by an immunologist who specializes in CFS, I asked her why Johns Hopkins was 'so focused on children with CFS and Ehler-donlos?"

Her short answer in laymans terms "floppy joints can/does suggest a floppy vascular system'.

With 3 children with EDS, think you'd be interested in researching the work of Dr. Rowe and his colleagues. Would be interested in hearing what you think. (Like many here, I have EDS as well.)

This should probably be on a separate thread, but wanted you to see this. Somebody can move it it they feel it needs to be elsewhere. Just wanted to make just Anna sees it.

He has a webinar on utube

[anna]

Thank you Kitt I will have a good listen to this and report back lol

[foggy_brain]

I found this article a very good read, although it's a little dense for a layman. It goes into depth explaining the terms I've seen often here and that I don't understand. Thanks, Issie. And, I was very impressed by the video by Dr. Rowe, the one that Kitt mentioned. It runs for 1 1/2 hours, but he does an admirable job of keying patient stories to quite a lot of statistics that would appear really dry otherwise.

Going back to Dr. Benarroch's exposition, it'll be silly it seems to me to ignore that "somatic hypervigiliance" would not be part of us patients who present with POTS. Look at Mrs. Upjohn and her doctor relationship below. Mrs. Upjohn's problem is that her blood pressure is regulated differently on her left and right side. Did such people who complain of autonomic dysfunction die out or what?

Realize that the doctors have to deal with actual people like this. So it's just as well the we learn to deal with this fact as patients. I've felt terribly hurt by doctors who stated in very certain terms that my problem was all in my head. That's just part of the battle, most doctors I've spoken to have very much focused on my specific "somatic complaints". That said, I think Dr. Bernarroch is cool and level-headed, he does not IMHO deserve email attacks by insulted patients, he did not say that POTS is psychosomatic. That it can be be part psychosomatic doesn't bother me, because POTS is so broadly and arbitrarly defined, it can be anything almost. Again, there was no mention of the percentage of (deconditioned) people in the population who have 30 bbm heart rate increase on tilt and who don't have symptoms. I bet that's a high number. So I see plenty of reasons to be skeptical of my own POTS diagnosis.

Mrs. Upjohn would surely find herself a diagnoses of CFS or POTS or something similar if she had lived today. That's just how it is. For that reason the doctors I'd personally would like to see are the ones in the mindset of Dr. Benarroch. They'd be scornful to the modern crop of Dr. Hackbenbushes. But for the real doctors to be able to help those of us who have mainly somatic causes, we have to understand that the genuine doctors have to separate the Upjohns from the rest of us. That's difficult for the doctors especially if they're attacked by mobs every time the word "somatization" or "hyper-vigilance" are mentioned.

I'd suggest that a better counter-attack is to define "psychosomatization", the psychological defense mechanism in doctors that lead to unsubstantiated or generalized claims of somatization in people with unknown diseases. That's how epilepsy, Tourette's, etc were viewed as mental disturbances. Let's not hand the opposition cheap points.

Edited November 21, 2012 by corina