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After much research, I am left wondering quite a bit with my diagnosis. I am currently diagnosed with autonomic dysfunction and suspected POTS. Like most I had a lot of trips to the ER with no answers and a lot of doctors shaking their head in wonder. The most frustrating part of my journey is the lack of knowledgeable doctors in my area. I'm in Pennsylvania and was referred to John Hopkins. Not the experience I was hoping for except the prescribed Midodrine and their referral to Vanderbilt in Tennessee which I don't have until February. I found Dr. K in Baltimore and have an appointment with him in November. Right now I am seeing a cardiologist to monitor everything but I can't help but feel that he is even perplexed. Prior to any medication I was extremely tachycardia so the medications Florinef and Midodrine on board have provided some support but I'm still unable to have a normal life. Now in the evening I have low heart rate sometimes in the 30's which make me feel terrible and kinda leave the beta blocker option out.

I've also been diagnosed with a pituitary tumor which they don't believe is active. But I also can't help but wonder if that is having some affect on my condition as my eye sight has gotten worse and I'm constantly in "fog". I was also diagnosed with aldosteronism and my echo said there was a change from the one three months prior in that I now have impaired ventricular relaxation / type I diastolic dysfunction which I only came across on my own by looking up my records AND not one doctor has talked to me about this result. I'm now developing these weird clear blisters on my hands and they are very sore and occasionally I get these weird rashes on my chest or my thighs.

I guess the point of my rambling is after reading a lot of the posts, which are very informative and helpful, I'm left wondering if Vanderbilt is the best option or if perhaps the Mayo Clinic would be a better choice. How long does it take to get an appointment at Mayo and is it the best option. I was hopeful about my appointment with Hopkins but don't want to have another bad experience. I would just like to investigate fully my options and the best choice. Any help anyone could share on their experience with Mayo, Vanderbilt, or Dr. K in Baltimore and their appointment timeframe would be greatly appreciated.

Edited by corina
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Is 'aldosteronism' the same as having an aldosterone-secreting tumor on the adrenal gland? If so, why are they not removing it?

Also, with having been diagnosed with a pituitary tumor, what are all of your hormone levels? Have they all been tested thoroughly?

If it were me, I would go to Mayo Clinic, only because you really need a good work-up by an endocrinologist at the same time you are having your POTS looked at.

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The tumor is on my pituitary gland in the brain and the endo doctor rechecked my levels and stated they were fine and the tumor was a microadenoma and not producing anything. My aldosterone came back at a level of 1 after the recheck and my catecholamine level total was 155. My metanephrine total came back at a total of 50. Now my renin activity came back at .12 and should start at a .25 and my aldos/pra ratio came in at 8.3 but should start at a .9 but doctor didn't say anything about that level. The endo doctor seemed to be comfortable with those levels. Still makes me wonder how something growing on your master gland doesn't have some affect on how you're feeling.

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I understand that you have a pit tumor, but I was first wondering about the aldosteronism. From what I understand, it is caused by the adrenal gland, and sometimes a tumor on the adrenal:

http://www.mayoclinic.com/health/primary-aldosteronism/DS00563

A tumor on your pituitary would affect these hormones. Have they all been checked?:

TSH

FSH

LH

growth hormone

ADH

ACTH

and, I may be forgetting something. The other thing is, if you have a tumor on the pit, it can sometimes be a prolactin-secreting tumor.

That's what I was curious about...have they checked all these levels? You can definitely feel bad if any of these hormones our off. Sorry if I am not understanding your situation correctly.

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I'm also in pa- I am a mayo clinic fan. I have never been to Vanderbilt but I've been to Hopkins many times. If I needed a neurosurgeon I'd go back to Hopkins in a heartbeat.

Otherwise I'd do to mayo clinic. Very interdisciplinary- which I needed.

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It took me 3 months to get into mayo. One nice thing is that you are not a lab rat. I spent a week NIH- my roommate had a pituitary tumor. After reading your post I think it makes sense that we were together.

I would not go back to NIH period. It's a different outlook. I'm very leery of research oriented medical care at this point.

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Did you have a virus or sometime type of infection before all this started? An endocrinologist is a good doctor to start with but if you have had a lot of infections/virus in the past you might want to see an immunologist. From all that I have read on the forum, it seems like the Adult patients are more satisfied with MAYO visits. Wish you the best, but in the meantime I would try to get to a doctor that will help you get to the bottom of your endocrinology problems.

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My ACTH level was less than 1. My insulin like growth factor was 241. My prolactin level was 11.2 on a scale of 3-13. I'm not sure about the other tests listed. The endo doctor didn't seem to think it was secreting. I'm also concerned about the diastolic dysfunction they saw on my echocardiogram and didn't speak to me about. The heart finding was a change to the echo they did 4 months prior so something is definitely affecting my heart.

As for a virus I don't believe I had a virus but I did have a strange rash on my chest and thighs and even on my calves two months prior to starting the POTS symptoms. The doctor I saw at the time prescribed steroids for the rash. I've mentioned to all the doctors I saw and they tested me for Lyme but no positive results on that. From time to time I will get a small break out rash which goes away on its own. Now i have these blisters on the palm of my hands. Stumped.

Just trying to figure out how a perfectly healthy and active individual develops POTS. Was just thinking if I find the cause perhaps that would assist with the care.

I didn't even give Mayo a thought until joining this forum so I appreciate all the responses. When you go to Mayo is it for a one time visit or do they keep you for a couple of days to run tests. Or is it dependent upon your case?

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My experience was with Mayo in Az. It took me three months for an appt. they asked me to arrange to stay at least one wk.( they actually prefer if you can make it open ended) I had test each and every day, all day long. If I could have stayed longer, I would have had more tests. It was the best medicinal experience I have ever had, and would recommend it to anyone able to go. Wishing you the best as you continue on this crazy journey.

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My doggie- love your Corinthians siggy. One of my favorite passages.

Plus + on Mayo being my best medical experience. I left with a definitive and accurate diagnosis, a treatment plan, and more hope than I had experienced for 10 years.

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My son gets rashes from time to time. Sometimes on his face, sometimes on legs and the sometimes on arms. If the rash appears on his arms or legs, it is usually gone by the end of the day. However, if it appears on his face, it stays around for a week or so. My son has also had trouble with warts on his fingers. Sometimes I have also seen bright red or purple looking pimples on his legs. This last time when his white blood count was up, he broke out with bright red spots on his leg. My son has never had any blisters but I'm wondering if you are not having some type of allergic reaction in your body.

My son was seen by an immunologist several weeks ago. Not only did she ask about infections but she also asked about rashes. Part of the symptoms you are describing are in the endocrinology field but some of these symptoms may be related to the immune system. You might want to check with an immunologist about some of your symptoms.

When my son went to MAYO, we were there for a week. They ran all the test and reconfirmed a POTS diagnosis. Have you checked the dinet forum's list of doctors. If you live near a doctor that specializes in POTS, they can run the test. It might save you a long trip to MAYO or Vanderbelt.

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Potsluck, I have developed diastolic dysfunction due to POTS, also. I don't really know what that means for me, but so far, my b/p is normal unless I am standing upright on a tilt table!

As far as your ACTH, that sounds really low. Did your doctor test your cortisol along with it? Was it high? Or, the low ACTH can happen when taking exogenous cortisol.

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Cortisol level was 13.4. BP is usually higher in the evening and is usually normal when laying down. I'm going to talk to the doctor about the heart thing. Good to know its not just me with diastolic dysfunction. What should a cortisol level look like?

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From what I remember, cortisol(serum) is considered high if over 25(varies by lab). Usually, when the ACTH is low, it is because the cortisol is high. But, yours isn't high, so it is odd that the ACTH is so low. I think Mayo's lab states that their ACTH range is 10-60.

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I did check the dinet list and that's how I found Dr. K in Baltimore. I have an appointment with him in November and I am on the wait list. Frustrating trying to see the specialist in this field seem to take time but I look at it like everyone else is anxiously awaiting their appointment just as much as I am. I am hoping that he can at least work with my doctor here regarding the medications and possible solutions so at least they'll both be working together. I'm just excited to see a doctor familiar with this condition so I feel more comfortable.

Funny the rashes I get from time to time go away within a day as well. I too get some purple prickly type spots on my legs that go away and don't bother me. I'm assuming that's from the pooling.

I'm really grateful for all of the comments and support. Hopefully after my visits I'll come back with some medical information that might be helpful for someone else.

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I went to Mayo Clinic. They were able to help me understand what is going on in my body a lot better, but unfortunately unable to get me back to my life. If I could do it over again, I would still go because they did a lot of valuable testing. I wrote in detail about my experience with each test and recently wrote a post about my experience getitng into Mayo if you're curious about what to expect. http://lethargicsmiles.wordpress.com/coping-with-illness/mayo-clinic-experience/

I also wanted to add I've had better luck with electrocardiophysiologists than regular cardiologists.

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Kayjay, I see your in PA as well , I like to know if you fly to Rochester mn, or did you drive long trip. I just Worry about the oxygen level on the plane. They say that the Cabin pressure in a plane is 6800 I don't know what my oxygen level would be 6800. I use a pulse oximeter and its goes from 95/98 all the time.

Loonymom, Here is a very short story of how I got pots. I don't think I have a virus or infection. But then again who knows, It all started back in December when I had a lump come out on the left side of my chest. It hurt so bad it stopped me for about 2 to 3 minutes then I went to a party felt terrible, left after a bout five minutes. While driving home we drove past the hospital I pulled in. They did a stress test and kept me overnight because of my low heartrate. Everything checked out fine except they but me on a holter monitor which showed episodes of bradycardia and tachycardia. Three days later I hit my head on I-beam twice in about five minutes very hard it did not knock me out I didn't go down but I had a headache. Went to my family doctor said stop worrying about your health. Did not tell him about hitting my head because I didn't think nothing of it. My vision was like a halo around everything for about two weeks and then it went away. Then I started getting chest pains and shortness of breath so I went to the hospital I was there for about 5 to 6 days came home for a week and couldn't get out of bed. Went to a different hospital and I was there for a week. They did a tilt table test on me and said that I had pots. They also did a head scan and echocardiogram. Head scan fine except for pituitary tumor and echo now showed impaired ventricular relaxation type I diastolic dysfunction which wasn't on the one done in December.

Another thing I drank about 8 to 10 cups of coffee a day and I stopped when I got sick in the hospital . Eight months before all of this I had cold hands and cold feet I would sit on my hands while sitting at the computer switching hands.

I'm still all new to this but just can't understand how at 45 this just popped up in my life. Stumped.

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I driven and flown. It's a long trip either way. I wore compression on the plane and wasn't traveling alone. I don't have oxygen issues- I just feel short of breath. It's a huge commitment and I'm not cured- but I have peace of mind. I was properly diagnosed.

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I am a huge Mayo fan. I went to Mayo, AZ. It took 4 months to get in. I was there for 10 days. While I am not cured I was correctly diagnosed and received effective treatment recommendations. They are very thorough at Mayo and do provide phone support for out of state patients. I am planning a return visit.

I hope you get some answers and help soon.

Janet

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Jackie,

Thank you for sharing your very informative experience. I will look into the Mayo clinic after hearing everything. I believe the doctor I saw at JH was an electrophysiologist and he did a thorough examination. I didn't have any testing done at JH. I'm hopeful to get a more definitive autonomic diagnosis so I know everything I can about this. I'm very pleased with all the information I have received at this forum and look forward to sharing experiences to help one another out.

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You're very welcome. :) At Mayo, I got one step closer to finding the root of my POTS, (finding out I didn't have nerve damage and my norepinephrine levels go nutty when I stand) and to me that is very important. From what I see, most autonomic centers can do the same thing for you and everyone has different preferences. I will say I didn't like how a particular autonomic center didn't put the patient in a quiet, dark room for the baseline blood draw for endocrine testing. Anyways, I'm rambling. No matter where you choose to go, I hope you are able to get some answers!

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Hi everyone. I was wondering if anyone heard of mayo clinic in florida. I scheduled an appointment there. I am afraid to fly at this point because of my chest pains, so wanted to drive and since I live in PA it would be closer for me to drive to Florida, then AZ. Do you think I will get the same experience as the clinic in AZ? Thanks.

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Gemma, I went to the Mayo in Jacksonville. I went for another health reason, but they sent me to a neurologist and cardiologist for the POTS, which I didn't even ask to have addressed. The neuro ordered the basic 10-minute tilt and sweat test, and then didn't have much to say about the whole POTS thing. My TTT didn't look too bad that day, even though I had one a year before that showed my b/p went up to 170/110. In the notes, she said that I "might" have POTS. The cardiologist was nice, but just told me to do exercise to build my leg muscles up to make them better pumps. I am not sure if you will find the help you are looking for.

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Thanks Sue. So i guess i better schedule appointment at AZ clinic. Maybe they specialize more in dysautonomia then other locations. I am just so scared to fly and thats why I chose Florida because its closer to Pennsylvania. If anyone else went to florida location please let me know about your experience. Thanks a lot.

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