New Member; Unclassified Type Of Dysautonomia

[Carrie]

Hello everyone,

I've been a lurker for several months and have finally decided to actively participate in the forum. I'll try to keep this introductory message as short as possible while still providing relevant details! My goal here is to seek and provide support, and also to learn more about the physiology of dysautonomia. I have a graduate degree in biochemistry and I'm a professor of anatomy and physiology, yet I've found that the textbooks and research articles are often not as informative as other patients!

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28-year old female; athletic; good nutrition (organic, whole foods); no medications; no other major illnesses

Signs:

Poor body temperature regulation

Cold intolerance: body temperature usually 96.8-97.4; hands and feet are ice cold to the

touch

Heat intolerance: when ambient temperature >75-80 blood vessels prominently “pop

out;” hands and face become red; experience syncope if standing (blacked out while standing/teaching in a warm classroom)

Do not sweat except a small amount from my face

Orthostatic hypotension / pre-syncope immediately upon standing

Low blood pressure (90-100/40-60)

Rapid resting pulse (90) despite being well-trained athlete

Low free tri-iodothyronine (FT3) (2.1) but normal TSH (1.7)

Anemia (RBCs currently 3.21)... normocytic trending toward macrocytic (MCV ~98)

High serum B12 and folate (take supplements)

Low ferritin (14), fairly unresponsive to iron supplementation

Low triglycerides (29)

Episodes of extreme hunger leading to binge eating (~6,000 calories) yet still underweight

Excessive thirst (12-16 cups of water per day) and frequent urination

AM salivary cortisol low; PM salivary cortisol high

Lack of menstrual cycle

Hospitalized as inpatient with obsessive-compulsive disorder, generalized anxiety disorder, and panic disorder at age 14

Symptoms:

“Feeling cold” and achy

Pins and needles sensation in hands and feet

Fatigue

Weakness

Noise sensitivity

Light sensitivity

Chemical sensitivity

Insomnia

“Hypoglycemic” symptoms despite normal measured blood sugar

Anxiety or feeling “wired but tired”

TMJ

Tinnitus

Other

MTHFR-TT gene mutation

Family

Sister diagnosed with mitral valve prolapse and migraines in childhood

Mother has hypothyroidism and vitiligo (autoimmune)

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For the last three years or so, health research has been my full-time job and personal quest. I've seen various doctors and ordered books and research journals from the entire world through my university's library...

I've had these kinds of symptoms my entire life but they seem to be getting progressively worse, and mutating each year. I am generally considered a productive, over-achieving type person, but I'm chronically exhausted and it takes great effort to do all of the things I enjoy.

Anyway, the "mainstream" doctors have fallen in to one of three categories:

- Telling me nothing is actually wrong and that I have "anxiety"

- Telling me that something is definitely wrong but it is benign and nothing to worry about

- Telling me that something is definitely wrong but they don't know what

The "natural" doctors have prescribed various herbal supplements, vitamin/mineral therapies, (at one point I was taking 22 natural remedies), to no avail.

I just got back from seeing one of the Michigan doctors recommended on this and other dysautonomia sites... he said something is definitely wrong but he's a cardiologist and I don't have a heart problem, so he can't help me or even hint at a diagnosis.

My symptoms seem more along the lines of neurocardiogenic syncope than POTS (in fact, my heart rate does not rise much when standing), but everything is getting more puzzling. When I take iron, my ferritin actually declines. I likely have very high adrenaline, but my blood pressure is really low. I have low thyroid hormones, but I'm underweight and not at all sluggish. I'm a well-trained athlete, but my heartrate is fast. Etc. Each symptom seems to mutually exclude another one! I'm not sure how to proceed in figuring all of this out!

Anyway, hello and nice to meet you all, though I wish none of us had the need to be here!

[hholmes13]

Hi Carrie! Sorry you have to be here but glad you found the site! Sounds like you're going through a lot right now. You definitely have a difficult situation. Have you been to an endocrinologist? I wish I had more advice, but there are a lot of great people here for support and info.

Good luck!

Heather

[corina]

Hi Carrie, welcome to the forum, great to have so many newbies, though, like you said, I'm sorry we all have to be here!

[LindaJoy]

Carrie. Welcome. I'm sorry to hear that you are struggling so, but I'm glad to meet you.

While reading your post, I was reminded of me, several years ago. While going through a divorce, I developed many of the same symptoms you are describing. In fact, it was then that my endo at the time first mentioned "POTS" to me.

I was in excellent shape physically, no health problems whatsoever, worked out all the time (which was probably the problem because, due to stress, I had become obsessed with exercise), ate like a horse, yet weighed little, sweat a great deal of the time as my body's metabolism would not slow down.

It got so bad that, just starting across the room to maybe go to the restroom, my body would speed up as if I were out for a jog. I got all of the same responses from docs as you have: there's nothing wrong, you're in amazing shape; there's something wrong, we just don't know what; it's just anxiety because you're going through a stressful time.

I knew something was wrong. I couldn't shut down! I hate to say it, but what finally helped was Zoloft. It slowed me down so I wasn't burning the midnight oil within myself all the time. Later, I had to add others meds, like an inhaled corticosteroid and antihistamines, for allergy problems that I had. I've also had a heart ablation because it was found that I had two pathways in my heart. And, three years ago, it was found I have adrenal disease, so I am on oral corticosteroids three times daily for that.

Please don't think I'm saying that stress is your problem and you need an antidepressant. I'm not. I was under stress when this happened to me, and an anti-depressant helped me. That's what I'm saying. I don't know what the problem is for you, and I certainly don't know what would help, but maybe my experience can be helpful to you. If so, I wanted to share.

I honestly think there is something wrong with me that my body can't handle stress--yes, some kind of severe dysautonomia for which I now wear a clonidine patch and do better with it--and I go into these symptoms as well.

I feel for you, Carrie. I'm assuming you've been tested for POTS, for tumors, etc., all the things we all get tested for while trying to rule in or rule out POTS.

Take care. Glad you came here. The members here are experienced (unfortunately) due to having to deal with illnesses for so long, knowledgeable thus, and so willing to share their knowledge, experience and compassion.

Lindajoy

[mwise]

Welcome Carrie and sorry you are having difficulty with being symptomatic. Know there are alot of persons here that are going through this also an will help & support you anyway. Hugs and love to you.

[targs66]

Welcome to the forum, Carrie.

I'm so sorry to hear that you're going through all this - but it is great to hear that you have the medical expertise that you've got. I honestly feel that this condition will end up being sorted out by the people who suffer through it.

I have been diagnosed with neurally mediated hypotension (which, if I understand it correctly, is just another label for NCS). I mention that b/c your symptoms and test results sound very similar to mine (with one major exception: you said you are "rarely sluggish" and I'm perpetually exhausted!) Just wanted to say that b/c it took a long time to get the NMH diagnosis, especially when a diagnosis of POTS was excluded for me.

Anyways, welcome, and keep us posted on your progress.

[Carrie]

Thank you to everyone for the warm welcome!

[Relax86]

As with each new introduction it always seems like I have 2/3 of the same symptoms...we are all the same yet different. I have helped myself more thry finding this forum then most of my tests or Dr.s....The people here have done their homework/research and I have benefitted greatly from them. Good luck.. ~ Tracy

[jangle]

Wow, professor of anatomy and physiology! That's very interesting, I myself am interested in medicine and the various subjects relevant to that.

I can relate to your frustration about the lack of knowledge in regards to the autonomic nervous system. I looked up an edition of Grey's anatomy and I couldn't find much on the vagus nerve or the parasympathetic nervous system at large. Online there are articles but still seems quite superficial, it's like a largely untouched subject. There are various studies testing neurotransmitters on animal PNS and that's what I've been using largely in trying to learn more about it. Still sparse in details and really wish there was more research.

[RichGotsPots]

Did you have a Tilt table test yet? That is one way doctors test for dysautonomia. If your HR changes in different tilts its POTS, but there are many sunsets of POTS...

[POTLUCK]

Hi Carrie,

A belated welcome. I was wondering about that MTHFR-TT gene mutation myself a while back. Isn't there variations in the severity, homozygous and heterozygous and different gene causes. If I recall right it affects the metabolic pathway to use folate and it might be best to use methyltetrahydrofolate, which the body can use. ( I noticed you were taking the B12 and folate supplements. )