New Here, But Not New To Symptoms

[Victoria]

Hello everyone. I'm a 53-year-old female who has been searching for a diagnosis for almost 3 decades. I recall having POTS symptoms when I was a young girl around age 8 or so. The summer heat seemed to melt me and I was always lightheaded and ill feeling. But being in the water — a pool, river or lake made my symptoms disappear.

In 1983 I went through a very nasty divorce and my symptoms intensified and eventually became disabling. I've literally been living my life on the sofa for the past 6 years because my body is intolerant to standing or sitting. My sodium has always been low and my internist prescribed Florinef about 2 months ago (I don't think he's aware of POTS), and it has been somewhat helpful. I also have low magnesium, potassium and calcium.

Hypovolemia

Hypotension/Hypertension

Increased Norepinephrine

Increased Dopamine

Low sodium (losing sodium in urine) despite large sodium intake

Axonal and Demylinating Neuropathy of the lower extremities (autonomic neuropathy?)

Presyncope

Huge fluctuations in BP and heart rate

Tachycardia (high 100s to 200s)

Episodes of bradycardia

I now have to use CPAP therapy to support breathing through the night. My respiratory muscles "forget" to work. I don't have classic sleep apnea, and my sleep disorder doc says I will pass in my sleep if I don't use the CPAP.

Low ACTH

Low Cortisol (used to be astronomically high)

Low Testosterone

Low Calcium

Low Potassium

Low Magnesium

Low growth hormone

Hypoglycemia

Increased urine output (polyuria)

I feel best when I eat very, very little, and I always avoid high carb intake

I was at Mayo Clinic for 8 months on/off back in 2002 and at the very end of my stay a neuro ordered some autonomic testing:

Evidence of distal postganglionic sudomotor and cardiovagal/cardiovascular adrenergic impairment. My internist and the autonomic technologists at Mayo were adamant that this needed followed up on. However, the neurologist that ordered the tests overruled them and sent me to psychiatry. I passed all of the ridiculous psychiatric tests he ordered, including the TOMM and test for somatization disorder.

My QSART responses were reduced at the foot site (-99) and normal for other sites.

In the end, Mayo sent me home without a diagnosis and I'm still being passed around as either having Munchausen's or a somatization disorder. I was thought to have Bartter's Syndrome due to low mag, potassium, calcium and sodium, but they have normalized with oral supplements (and I do feel a bit better taking them). I feel the Bartter's diagnosis is erroneous and I also think that's where my nephrologist will go with it.

This is my (very short) list of symptoms and I'm positive I have POTS — possibly Hyperadrenergic POTS with the increased norepinephrine and dopamine. My symptoms have evolved and increased greatly through the decades. I'm miserable feeling like death every day — and I mean that literally. I truly feel like I'm dying at times. I'm alive but I'm not really living.

I live in Iowa. Can anyone recommend a knowledgeable physician in any of the states surrounding me?

What can I do to help myself in the meantime?

Thank you in advance,

Victoria

[sue1234]

Low ACTH

Low Cortisol (used to be astronomically high)

Low Testosterone

Low Calcium

Low growth hormone

Hypoglycemia

Increased urine output (polyuria)

Okay, has an endocrinologist ever noticed that these things point to hypopituitary???? Have they at least done a stimulation test to see how your pituitary and adrenals work? How low were your cortisol and ACTH?? These things need to be addressed immediately. The rest can be addressed afterwards.

Was the norepinephrine high just on standing or just during a 24-hour collection? Was it barely high or really high? A "really" high norepinephrine can be from a pheochromocytoma.

Just trying to mention the things that jump out from your post.

Just getting those fixed would definitely help the way you feel, and then you can go from there. POTS isn't always a "disease" in itself, sometimes it happens because of something else going on. Please keep us posted.

[firewatcher]

I was about to suggest exactly the same thing.

[Victoria]

Thanks so much for jumping in. My highest norephinephrine was a 24-hr. urine collection several years ago, and it wasn't astronomically high. Anyway, the doc (not endo) said the high levels were due to anxiety. I knew they weren't. More recently I had a serum norephinephrine that was very high normal and my endo reviewed that one.

The other endocrinology test results have not been analyzed by an endocrinologist and I don't see my endo again until July. I've pushed really hard and this is as soon as he can see me. I have not had the stim test and this is what needs to be done. Some are older results, they were not necessarily drawn at the same time, but they still seem significant to me. but my endo seems not to be too concerned. Hypopituitary is a huge concern of mine.

Aldosterone 7.0 (7-30)

Cortisol 1.0 (4.0-11)

ACTH-ICMA <5.0 (5-37)

Another:

Aldosterone 4.6 (7-30)

Sure wish someone would get the show on the road for me.

Thanks for replying, I really appreciate it.

Victoria

[sue1234]

You need to call your endos office and say that you had these tests via another physician and tell them what your results are. Your cortisol is too low, and that can be life-threatening. I'm not trying to scare you, I'm just emphasizing that someone needs to address that now. Could your physician that did those tests be the one to talk about getting on cortisol replacement?

[Sarah4444]

Hi Victoria-

I just want to welcome you and tell you how sorry I am to hear how poorly you have been treated on this difficult path. It's one thing to not diagnose and help patients appropriately, but so much worse to tell them it's all in their head or suggest they are making things up.

Have you looked into the hyperadrenergic POTS/MCAD angle? I am still trying to figure things out, but know that I also felt critically ill a lot of the time before starting the MCAD meds. I still have ongoing, frustrating trouble with orthostatic intolerance, but at least I don't feel like I am dying all the time.

I am Canadian so I can't help you with a medical referral, but hope you can find someone to help you soon. Please let us know what you find out, and I hope you start to feel at least a bit better soon.

[Victoria]

Thanks so much. I did try calling him and he wants me to produce the actual, original results and I can't. I have boxes and boxes of medical records I've collected through the years and I'm just too weak to go through them all to try and find them. What I did do was transfer the labs to my computer to keep kind of a medical journal, but that isn't good enough for him. I don't understand why he won't just order the tests over again.

The physicians that did the tests. One was a GP who didn't know what to make of the results, so she referred me to my current endo. I recently realized she'd forgotten to include the pertinent labs, and now she can't find all of them in her sistem. The other was a very well known endo in CA, and he wasn't able to tell me much because the lab in LA lost my morning Cortisol and Aldosterone. That was discovered after we'd been back in Iowa for a day or two. All in all, we had a nice family vacation in CA, but no answers. I've tried getting the CA endo to re-send me my results, but he isn't willing to do that. He told me to have someone here in Iowa do the ARG-GHRH test to validate my low IGF-1, but no one will.

All of this is too much to bear. So much to try to deal with and I'm spinning my wheels. Going to see my internist in a few minutes and I'm hoping I can get through to him so that he can light a fire under my endo. Wish me luck?

Thanks again,

Victoria

[sue1234]

Definitely wishing you luck!! I hope this doctor helps you get this sorted out.

[Victoria]

Sarah,

I've learned that blaming the patient is a quick and easy method to rid oneself of a challenging patient and that we carry medical-legal risks. At least in their minds. But challenging and purely psychiatric are distinctly separate entities. I've been dismissed as a patient at least 5 times because of my "same old complaints" with unfounded labs. I've run into more docs that think and act like they have a psych degree and they have no business trying to make calls like that. . . . It is inappropriate to try and heap falsehoods like Munchausen's or Somatization onto anyone who is chronically ill and/or undiagnosed.

I made no progress with my internist this afternoon. But he did tell me to keep calling/pushing my endo for pituitary/adrenal testing.

At the risk of sounding incredibly dense, what is MCAD? I understand a bit about hyperadrenergic POTS, but I don't know what MCAD is.

I'm so sorry you're going through so much and you've also experienced the feeling of impending death. It sounds like life is very challenging for you as well.

Thank you so much for chiming in. I appreciate it very much.

[Sarah4444]

You don't sound dense at all, Victoria. I had never heard of MCAD either until Julie from this site told me about it since my symptoms were similar to hers. MCAD is Mast Cell Activation Disorder, and it's a confusing disorder that is only being identified and sorted out. Some doctors seem to think it's actually undiagnosed Indolent Systemic Mastocytosis, while others think it's a disorder of mast cells that degranulate too easily.

Start by Googling the article "Hyperadrenergic POTS in Mast Cell Activation Disorder" (Shibao et al, 2005) and if any of that seems to match your symptoms, take a look at www.tmsforacure.org to learn more about MCAD. There is also a good youtube video called "Mast Cell Activation", made by several mast cell doctors. I have joined the Mastocytosis Society of Canada and there is alot of good info there too (and a thread for those of us with overlapping POTS and other disorders).

Just let me know if you need more info - for me, a combination of POTS and MCAD treatments seems to be the best I have come up with so far (but still working on it!).

[Victoria]

Thank you very much, Sarah. I'm very anxious to read about this and I'll get back to you once I do.

My husband is on his way to a meeting and just phoned to give me his perspective on my appt. yesterday. He said I come across as being more medically knowledgeable than I should be given my background. He thinks I should let my doctor lead the way and "dumb down" (his words). It doesn't seem to matter how I approach them, I still don't make headway.

Do you, or does anyone have advice about how to approach a physician and get the message through that I'm struggling to survive? I'm in and out of crisis mode constantly. For some reason I'm just not getting the message through about how ill I am, and how challenging it can be just to sit vertically in a chair. I'm catching a URI and my respiratory muscles slowed way down again last night once I laid down in bed. I felt like I was losing consciousness or slipping away. It isn't funny, but I was thinking to myself, this is a good way to go just quietly slip away in my sleep. This happens whenever I'm coming down with a virus, bacterial infection, or have been through stress or trauma.

That being said, I do have days when I'm able to walk about quite a bit as long as I don't squat, get up and down a lot, push, pull, or climb steps or hills. I just got back from a relaxing vacation with my Mom and Dad in the Florida Keys. During the times when we were out of the bus I couldn't keep up with my Mom, and she's 74 yrs old. When I'm mobile I always pay the price later. In fact, I feel best *if* I'm able to be on my feet (as long as I'm not standing in one spot, that's a no-no for me). My symptoms hit me with a vengeance as soon as I sit down or stop what I'm doing. I'm thinking it has something to do with low aldosterone, but what do I know? I'm just a lowly patient.

Victoria

Edited March 15, 2011 by Rachel
Quotes removed. Please use "add reply" button.

[Sarah4444]

I wish I could tell you I have found how to make doctors understand how severe and distressing this is, but I haven't. My mother is a physician and she and my husband came with me to see some specialists; it helped with one doc who knew her, but another treated me with a level of contempt that astonished her.

I think there are many problems, the main being that they have no idea what we're talking about so it sounds like we are exaggerating our symptoms. It's a catch 22 - if you tell them how bad it really is they think you're hysterical, but if you minimize the symptoms to be socially acceptable they don't get how serious it is. I have had the most luck with female physicians and with geneticits but that may just be my situation. All I can say is keep trying.

I have kind of built a treatment plan for myself that has at least alleviated the worst of the suffering for now, and I am lucky at least that my family doc listens to what I have learned and is willing to let me try meds and to make referrals. I still wish he would actually read things I bring him and try to understand, but the genetic counselor I see is doing that so at least I am able to talk things over with someone. I think the level of indifference and unkindness that many of us have encountered in the medical system is incredibly unfair, counterproductive, dangerous, and borders on malpractice. On the Mastocytosis Society Canada website there's an article about the preferential treatment of male masto patients (and the terrible discrimination faced by female ones). I think this applies to POTS too, with its high female preponderance. It's sad.

[mwise]

Hi Victoria,

I am sorry your Endocrinologist is reacting slow along with your Internist about redoing the tests. Have you thought about going back to Mayo Clinic-Minn I am guessing? Things have changed since 2002 and maybe you would get the diagnosis you need now. I live in Ohio and would highly recommend Dr. Blair Grubb at the Toledo University Hospital Medical Center in Toledo, Ohio-POTS specialty and/or Cleveland Clinic-Cleveland, Ohio-Dr. Robert Shields-Co-Director of Autonomic/Syncope Disorders (Neurological Institute). They also have wonderful GI & Endo doctors. I have had wonderful care under Dr. Shields and the GI doctors at Cleveland Clinic. They are all very empathic and supportive.

You really do need to have those tests redone.

[Victoria]

My endo's office called yesterday and I got a cancellation on April 14th. Not perfect, but way better than July!

I won't ever go back to Mayo, I had a wretched experience there.

Thank you for passing on Dr. Grubb's name to me. I really appreciate that. If the locals don't get this figured out soon I will find a way to travel to Ohio. I'm so happy to hear you're getting good care.

Do you happen to know, will I have to stop taking my meds (Florinef, magnesium, etc) before having the autonomic tests?

Thank you for replying. I appreciate your kindness!

[potsgirl]

Victoria,

I'm also from Iowa (Ames!) and I went to the Mayo Clinic in Rochester. Is that where you went? I had a very good experience there, and it's pretty close to Iowa, depending on what part you live in. Since you haven't gone there since 2002, I would definitely go back again. I think there's been a lot of changes there in the autonomic department, and you may get more answers. I currently live in Tucson, AZ, where I go to the Mayo Clinic in Scottsdale. I have a doctor there who was in Rochester, but just moved back here, and I'm lucky to have him. He's great - returns my phone calls, etc. I also have heart issues, so I see a cardio there, too.

If you decide to try Mayo in Rochester, try to get Dr. Low. And I come back to visit my mother frequently, so perhaps we'll meet in Iowa sometime!

Cheers,

Jana

ps....your high fluctuation in BP and HR sounds like orthostatic hypotension/intolerance. I also have that.

[Victoria]

Hi Jana! So nice to meet a fellow Iowan here! Yes, I went to Rochester, and I think Dr. Low was there when my testing was done; I just took a peek at his picture and he looks familiar. Unfortunately, he didn't have the last say, another neurologist did the one who ordered it just to get me out of there. The problem is no one even suspects autonomic dysfunction after all these years, even with my Mayo test results. I was taking Remeron at the time and Dr. Low's technologists and my internist wanted to re-test me while I was off Remeron. The other neuro said no way. Now I'm wondering what effect Remeron might have on the autonomic system?

I'm really glad you had, and continue to have excellent experiences with Mayo. As much damage as my time spent there did to my future physician visits, I'll have to put them on the back burner and really ponder it before I say yes. Do you know if Dr. Low is well educated about every type of autonomic dysfunction, including Hyperadrenergic?

You aren't (or weren't) too far from me in Ames! I'm a few miles north of Iowa City in Solon. The "other" Iowa college town. I'd love to meet up with you some day!

Take care,

Victoria

Edited March 15, 2011 by Rachel
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[mwise]

Hi Victoria,

Glad your appt. got moved up by the Endocrinologist. That is a very good thing. I am praying he/she will do those tests quickly. I am sorry you had a bad experience with Mayo. I do believe if you follow-up with any of the Ohio doctors, you will be very pleased & satisfied. I did have to stop taking Florinef, when I was on it (I had very bad side effects so wasn't on it for very long) for my tests. Good luck and keeping you in my prayers that you get the answers you derserve.

Edited March 15, 2011 by Rachel
Quotes removed. Please use "add reply" button.

[Victoria]

Awwwww, thanks so much for the info, and especially for the prayers.

xoxo