When Mayo Won’t Help. What Next?

Posted by faithgirl30 @faithgirl30, Nov 21, 2020

I just returned from a whirlwind trip to Scottsdale Mayo campus. I’ve been dealing with totally crippling and devastating fatigue for more than 1 year — which started after my 5th spinal surgery in the past 4 years. My medical/surgical team initially thought the fatigue was just due to a strenuous surgery and recovery. But then I lost 50 pounds without trying and cortisol tests revealed low cortisol levels. After a cortisol stim test with some confusing numbers, one of my doctors who trained at Mayo wanted me to be evaluated by a Mayo team to get to the bottom of what’s wrong. He assured me that the Mayo doctors are the best at what they do and their team approach to providing care is second to none. Thankfully the referral went in on Tuesday of this week and by Friday I was being seen in Scottsdale by an endocrinologist.

I spent a thousand dollars on spur of the moment airline tickets, a rental car and lodging. I was deeply hopeful that I would have the experience that’s printed on Mayo’s own website:

“Successful treatment starts with an accurate diagnosis, and our experts take the time to get it right. A team of specialists will listen to your needs and evaluate your condition from every angle to make the very best plan for you”.

Unfortunately, that was nothing like my experience.

Instead, I met with an endocrinologist for 20 minutes who looked at my file and said, “yes your cortisol numbers are a little low, but not earth shattering. I don’t think your symptoms are actually endocrine related. I don’t know what’s causing them, but I’m sure it’s not related to anything I treat. I will run a few lab tests to rule some things out but I doubt it will uncover anything. I’m sure that whatever’s wrong with you isn’t related to my department.”

So, I asked if I would see her again and she said no the results would be posted on the patient portal. I then asked what happens after that and she replied, “you go home”.

So I had labs drawn for thyroid and diabetes, and celiacs disease, and she redid the cortisol stim test. They came back negative, and I am now on a plane home (in just under 24 hours at Mayo) with no diagnoses, no further steps, no referral, and no suggestions about where to turn. What happened to Mayo’s commitment to find an accurate diagnosis and for the evaluation by a team of experts?

And what am I supposed to do now? I’ve still lost 50 pounds without trying and I’m still so tired I can’t function. When Mayo won’t help? Where do you turn? I’m so thoroughly disappointed in the Mayo Clinic I could scream – but I’m too exhausted to do so.

I tried deleting this post and moving to the visiting Mayo page, but I see that’s not allowed. My whole Mayo experience from top to bottom has been lousy – and the Connect site and the inability to delete and move a post just adds to frustration.

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Hi @faithgirl30, I moved your message to the Visiting Mayo Clinic group (https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/) as per your request.

Your visit to Mayo Clinic in Arizona sounds disappointing to say the least. I'm really sorry to hear that that was your experience. Let's see if we can't problem solve this with some ideas from Connect members and seeking the proper channels within Mayo. I'm tagging a variety of fellow Connect members to hear their thoughts about coordinating care at Mayo Clinic, like @danab @windwalker @waynen and @jenniferhunter (who has also had extensive spinal surgeries).

First, I encourage you to submit your situation to the Office of Patient Experience by email or phone and tell them everything you've written here. They don't answer medical questions, but will certainly address your disappointment of not getting the full Mayo experience and team approach you were expecting. The team approach is the hallmark of Mayo Clinic. Here's the contact information https://www.mayoclinic.org/about-mayo-clinic/patient-experience

Secondly, could you request that the endocrinologist suggest a referral to another department, like Internal Medicine or Rheumatology? You should be able to make this request through the patient portal. Ask the endocrinologist who you should see next. If you're not to see her or endocrinology to continue the investigation of your issues, who should you see next? That is a reasonable and expected question to ask. Are you still in Scottsdale now?

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@colleenyoung

Hi @faithgirl30, I moved your message to the Visiting Mayo Clinic group (https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/) as per your request.

Your visit to Mayo Clinic in Arizona sounds disappointing to say the least. I'm really sorry to hear that that was your experience. Let's see if we can't problem solve this with some ideas from Connect members and seeking the proper channels within Mayo. I'm tagging a variety of fellow Connect members to hear their thoughts about coordinating care at Mayo Clinic, like @danab @windwalker @waynen and @jenniferhunter (who has also had extensive spinal surgeries).

First, I encourage you to submit your situation to the Office of Patient Experience by email or phone and tell them everything you've written here. They don't answer medical questions, but will certainly address your disappointment of not getting the full Mayo experience and team approach you were expecting. The team approach is the hallmark of Mayo Clinic. Here's the contact information https://www.mayoclinic.org/about-mayo-clinic/patient-experience

Secondly, could you request that the endocrinologist suggest a referral to another department, like Internal Medicine or Rheumatology? You should be able to make this request through the patient portal. Ask the endocrinologist who you should see next. If you're not to see her or endocrinology to continue the investigation of your issues, who should you see next? That is a reasonable and expected question to ask. Are you still in Scottsdale now?

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@colleenyoung Thank you for this very helpful and gracious reply to my post. I’m so grateful to hear that there are still some things I can do to try to facilitate a diagnosis.

In answer to your question, no I flew home last night to Washington state like the doctor told me to. There weren’t any tests or procedures left and no one else to meet with. But I cried most of the way home because I felt so hopeless and disappointed that this was the end of the Mayo help I was being offered.

I will get in in touch with the Office of Patient Experience as you suggested and send a note to the Dr and ask her who she recommends I see next.

If anyone else has recommendations about what I can do I am fully open to ideas. I wanted to post because I know there have to be members out there who know if it’s possible for me to still get help through Mayo.

Thank you!

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I'm so sorry to hear about your experience with Mayo. My first experience was different, but when I first entered Mayo's services, I had a diagnosis and was looking for treatment. However, after my treatment I had another health issue, rectal bleeding. My radiation oncologist couldn't help, but suggested going to Mayo's ER at the hospital. They were very thorough. I saw 5 doctors at the ER with different expertise and they referred me to right specialists for consultation. After a colonoscopy, they found the problem and took care of it.

So, I'm not sure what to advise, other than keep trying to get to the bottom of your illness. My specialist wasn't able to help for something they don't normally treat. I've found that a GP is more apt to refer to specialists for health problems. At Mayo, at least in Phoenix, that's either at their hospital or family practice, which is hard to get in. We've been waiting almost a year to get a GP with Mayo.

Keep trying.

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I understand what you're saying. I've made two trips at my expense to Mayo without any diagnosis, except they say I have fibromyalgia which is a catch-all I feel. I'm dying here and no one will help me. I wrote a complaint letter, that was the reason for my 2nd trip to Mayo. I plan to send another complaint letter. to

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@rivergirl8243

I understand what you're saying. I've made two trips at my expense to Mayo without any diagnosis, except they say I have fibromyalgia which is a catch-all I feel. I'm dying here and no one will help me. I wrote a complaint letter, that was the reason for my 2nd trip to Mayo. I plan to send another complaint letter. to

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@rivergirl8243 I went back and read some of your earlier posts. My pain specialist stated when I saw him the other day that it sounds like I have “sacrum dysfunction”. When I look it up it come up “ Sacroiliac Joint Dysfunction“. I will get a injection tomorrow and hopefully it will help me. I have had back surgery in the L-S joint twice. The last time (2008) I had an artificial disc put in and hardware was used. The specialist says he is pretty sure that my hips are out of sync because of the hardware. Could something like this be going on with you? It can happen without previous surgery. I think if it does not help I will try physical therapy. .. or may go for it in addition no matter which way it goes.

ZeeGee

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@rivergirl8243

I understand what you're saying. I've made two trips at my expense to Mayo without any diagnosis, except they say I have fibromyalgia which is a catch-all I feel. I'm dying here and no one will help me. I wrote a complaint letter, that was the reason for my 2nd trip to Mayo. I plan to send another complaint letter. to

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@rivergirl8243 have you used the route shared above that @colleenyoung mentioned to contact the Office of Patient Experience by email or phone to share your feedback? If not, here is that contact information https://www.mayoclinic.org/about-mayo-clinic/patient-experience

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yes i have

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@rivergirl8243

I understand what you're saying. I've made two trips at my expense to Mayo without any diagnosis, except they say I have fibromyalgia which is a catch-all I feel. I'm dying here and no one will help me. I wrote a complaint letter, that was the reason for my 2nd trip to Mayo. I plan to send another complaint letter. to

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Maybe one of the knowledgeable moderators can help. Does Mayo ever refund $ when they are unable to diagnose or help?

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@bustrbrwn22

Maybe one of the knowledgeable moderators can help. Does Mayo ever refund $ when they are unable to diagnose or help?

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@bustrbrwn22 I've never heard of a healthcare provider working in that way.

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@faithgirl30 I am sorry your Mayo experience was disappointing. I think your physician doesn't know what direction to advise and was honest about that. It would have been better if she could have advised a different type of specialist for you to see. I would like to offer what I've learned through my experience and hope it may provide a new path that could lead you to find your own answers. Don't be discouraged. You were brave enough to reach out here for support. Doctors are human and they don't have all the answers and they can misdiagnose and make mistakes. That would be worse than a doctor who tells you they don't know what is wrong if you go down a misdiagnosed path for years. I know the frustration very well myself because it took 6 surgical evaluations before I found a surgeon who understood how spinal cord compression in my neck caused pain all over my body. I spent 2 years looking for and being denied help, and I was getting worse and loosing the coordination of my arms. I am an artist, and I cared about that a lot, but I couldn't convince the first 5 surgeons to help me. Those were difficult years.

I am a Mayo spine and ankle surgery patient, and I've also seen an environmental medicine (functional medicine) doctor for a number of years. My one and only visit to an endocrinologist was to diagnose an auto-immune thyroid condition and I was sent home with a record that stated my thyroid was still functioning properly so no treatment was recommended. When I then became a patient of the environmental medicine doctor, he optimized my thyroid with porcine thyroid hormone because it was low. The tests are gauged against averages for the entire population including people with poorly functioning thyroids, so his approach was to get it to an optimal level, not an average level. Just having results within an average range was not optimal. When I needed a biopsy for a thyroid nodule, he advised me to go to an ENT and not an endocrinologist and he didn't agree with their approach to thyroid disease. He belonged to AAEM, the Academy of Environmental Medicine, and his approach was to tweak the biochemistry and adjust hormone levels to optimize health. The focus is to prevent disease instead of treating symptoms with pharmaceuticals. He advised me to have my old silver dental fillings removed and said that was affecting my thyroid. I asked my dentist at the time who told me silver fillings were safe, but my experience speaks otherwise. The antibodies attacking my thyroid were too high to be measured until after all the silver dental fillings had been replaced with safer composites, and then they were in the low range and still present. In treating me, he also did hormone replacement and customized allergy shots for typical things like molds, dust, pollen, etc. Doing all of that reduces the body's levels of inflammation. I also have asthma which had gotten worse and I saw a pulmonologist because I kept having respiratory infections. Old dental work was still affecting my health which I realized after the removal of a few teeth with failing root canals. My breathing suddenly improved after that. Evidently the roots of the teeth had been leaching bacterial infection and cadmium from the gutta percha material used in root canals for several years. None of my doctors caught that connection, but I did share that with them. I was tested for cortisol levels and adrenal gland function and had taken supplements for that at one time.

So many things can cause fatigue. I gave up food with gluten 20 years ago when no doctor would listen to me. That issue also caused a lot of food allergies because the inflammation caused a leaky gut which exposed my blood to partially digested foods, and I had to give up many different foods. There can be problems caused by immune responses to foreign materials in surgical implants. When I had my cervical spinal fusion, I chose to do that without hardware because I wanted to avoid possible immune issues. With my recent ankle fracture, I had to have titanium hardware plates placed in surgery and I will likely have them removed next year because they are causing pain. My body just doesn't like metals and I gave up wearing pierced earrings because of reactions. Healing from surgery takes a lot of energy, and you can have other issues adding to the fatigue.

All surgeries cause scar tissue and fascial restrictions which can compress organs or restrict movement and proper body alignment. The treatment for that is myofascial release which is a physical therapy to stretch the fascia and get it rehydrated and functioning again. If you are approaching menopause, changing hormone levels can cause fatigue. If you have had a tick bite, there could be a possibility of Lyme disease or another bacterial infection. If you have asthma or allergies and increased amounts of phlegm in your lungs, that can be very tiring if it builds up and isn't expelled properly. That happened to me and I also have a physical problem of thoracic outlet syndrome that makes my chest too tight on one side and I kept getting chest infections that always started on the tight side until the baseline mucous levels dropped after the bad teeth were removed. There are some lung infections that are hard to treat and there are discussions on Connect about MAC and bronchiecstasis and having that will cause a lot of fatigue.

Question everything. Your solution could be finding several different things. If the lungs are blocked by phlegm and can't supply enough oxygen or the heart isn't efficient enough the oxygen levels will be lower and the patient has fatigue. You can purchase a pulse oxymeter to check oxygen levels when you feel fatigued. I have one and when I have asthma congestion I see my levels drop slightly. They cost about $35 and are worth having now to monitor for changes that could indicate COVID lung problems. I hope your doctor checked a blood cell count. Anemia would likely cause fatigue because there would be less red blood cells to deliver oxygen to the body. You can figure out any food issues and allergies yourself. Those can cause fatigue and pain as well. Keep a food journal so you can find a connection to foods that cause issues and you can test that with an elimination diet.

You may want to write down your medical history of surgeries, and dental work, and illness to look for a pattern, and what type of surgical hardware you may have. Do you feel fatigue all the time or is there a pattern to when it happens?

You can be tested for surgical implant hardware compatibility at https://www.orthopedicanalysis.com/ a lab in Chicago.

The pioneer in the field of Environmental medicine was Dr Rea. You can contact the practice he founded at https://www.ehcd.com/ . They are in Dallas and they sell some volumes for physicians of their research and work. They have treatments for surgical implant immune issues.

This lab tests for environmental issues like mold toxicity and has some educational content. https://www.greatplainslaboratory.com/

There are environmental medicine doctors in Washington state. Here is a provider search for AAEM. https://www.aaemonline.org/find.php

Here is our discussion on myofascial release. There is a provide search on the myofascial release website. MFR has been very helpful to me in recovering from thoracic outlet syndrome and my surgeries. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

For Lyme disease and testing, the lab with more accurate testing is https://igenex.com/the-igenex-advantage/
The western blot test isn't very accurate and misses diagnosing Lyme Disease.

Doctors who specialize in treating Lyme are in the ILADS group.
https://www.ilads.org/research-literature/controversies-challenges/
This page has a link to a provider search. https://iladef.org/education/lyme-disease-faq/

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@jenniferhunter What a wonderful post that pretty much covers the waterfront. I am going to update my medical record so that the picture of my health life includes issues that relate to the whole body. I just noticed that my Endocrinologist has listed non traumatic fractures as part of my bone history. There must have been some misunderstanding because all of my bone injuries have been trauma related…..like falling off of horses and down mountains. I even had all of my spine imaged for evidence of fractures. There are none. So…see….I need to change that summary. Hope you are doing well with your recovery. When will we see you again? After Covid I am sure.
Chris

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faithgirl, I am so sorry to hear of your experience at Mayo. I made the trip to Rochester with my husband. It is a 7-hour drive for us so we spent one week in Rochester, then one week home, than back again for another week. It was all a waste of time. I remember the rheumatologist telling me all about how he diagnosed another patient immediately. As he droned on and on, I wondered when he would get around to me. He said he was impressed by the documentation I brought with me, but my case was very complicated and he did not know what was wrong with me. Of course, I saw other doctors there, but no one could help me. I sent two of the doctors a letter begging for help after the second trip and I had received the "nothing" letter. I think once you are there and gone, no one will reply. Maybe you will have better luck than I did. I do wish you the best and hope you can find someone to help. @joybringer1

Liked by bustrbrwn22

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I want to thank each of you for sharing your stories and resources. I continue to deeply struggle with the grief and deep sadness of not receiving help. I know doctors are human and they can only diagnose what they know. In fact, I work with a team of doctors locally in my home region in the area of physician burnout, providing them deep listening and an opportunity to share their own stories with me and each other — so I see their clay feet on a regular basis. But I have already lost a year of my life, waiting and waiting to get better. I guess, I misjudged the Mayo Clinic process and falsely believed that if one doctor didn’t know the answers I needed that they would reach out to their colleagues for diagnostic help and advice about where to turn next. It’s heart breaking, as many of you know only to well, to feel abandoned in the care process.

Thanks again for listening and sharing your own experience.

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@faithgirl30

I want to thank each of you for sharing your stories and resources. I continue to deeply struggle with the grief and deep sadness of not receiving help. I know doctors are human and they can only diagnose what they know. In fact, I work with a team of doctors locally in my home region in the area of physician burnout, providing them deep listening and an opportunity to share their own stories with me and each other — so I see their clay feet on a regular basis. But I have already lost a year of my life, waiting and waiting to get better. I guess, I misjudged the Mayo Clinic process and falsely believed that if one doctor didn’t know the answers I needed that they would reach out to their colleagues for diagnostic help and advice about where to turn next. It’s heart breaking, as many of you know only to well, to feel abandoned in the care process.

Thanks again for listening and sharing your own experience.

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@faithgirl30 I am so sorry for your experience. I think most of this have suffered what you are going through while maybe not at Mayo, at doctors and clinics within our own communities. It’s a long, exhausting struggle. Rest a couple days then start the fight again. We are here for you if you need to talk. For some of us it has taken years, literally. All the best.

Liked by faithgirl30

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