Anoj

I have had thyroid disease since I was 10 years old. My dysautonomia didn't develop until late 30s. I wouldn't say they are unrelated, but I can definitely tell the difference between thyroid fatigue and POTS symptoms.

I know I posted this a long time ago, but does anyone know if these things are still being denied?

I am interested (again) in pursuing additional doctors and/or clinics, including possibly Vanderbilt, but I'm not willing to do this if it's going to cost me tens of thousands of dollars.

I'm actually trying to be proactive about building more medical records for myself in case I have to ever file for disability. I consider this often. My current cardiologist isn't much help, as he acts like this is all my fault because of "deconditioning," and I don't think that makes a very strong case.

And there it is. Game set and match. I was already about 90% certain my condition was caused by 'local interference' of alpha 1 mediated vasoconstriction with compensatory overactivity of the general sympathetic nervous system. My general belief is that its specific to alpha 1b subgroup and as a consequence some vasoconstrictors work better than others.

ive been pushing for research into autoimmunity beyond the acetylcholine receptor autoantibodies since 2005 due to the overwhelming evidence that pots is autoimmune in some patients (acute onset, fluctuating course, female to male ratio).

Its also important to note that kidney alpha 1 receptors may be involved in sodium retention.

congrats to dys int and Lauren Stiles for facilitating this discovery and Dr Kem and Dr Raj for their work.

in the words of an important POTS researcher - autoantibodies are here to stay (in pots research).

hello! is there some way you can explain this in ... "simpler" terms? i'm really lost here.

i will say that i do suspect that my dysautonomia is autoimmune, because i already have 1 other autoimmune disease.

it does seem as though any dieting will need to be less extreme than what "normal" people can do, which means slower weight loss.

I would be ok with this theory IF I could actually lose weight on a regular ol' healthy diet. unfortunately, when I just watch what I eat and reduce calories by a moderate amount, I DON'T LOSE ANY WEIGHT! once my body adjusts to the lower calories, it just stays stuck. I've found that in order for me to lose any weight at all, I have to really diet.

I have an idea to diet for 3 weeks then when I start feeling bad, perhaps give myself a week (or so) break, and then try to get back on it. I may have to diet in spurts ...

I am experiencing this and going to weight watchers as well. First I had lost 10 pounds when lightheadedness and exercise intolerance started out of the blue. Then I gained 10 pounds and decided to start weight watchers again. I see increased dizziness with dieting although I am more used to it now and am pushing through.

EXACTLY what happened to me. i lost about 10 and then gained the 10 back when i started feeling bad. my body just would not let me diet. i'm trying to hop back on the point tracking again. the only thing i can think to try this time is to stay even more hydrated before and try to make my meals as protein-heavy as possible. i'll try to keep you posted, and please let me know how you progress, too!

what's really frustrating is that i know how to lose weigh and WANT to lose weight, but my body doesn't seem to want to let me!

I'm constantly getting little tiny red dots that are unbelievably itchy. like, a pindrop size will keep me awake at night. if I keep scratching, it turns into red welts that kind of look like hives, but not really. been trying to figure out what it is for years. dermatologist was no help. at first, they do seem like mosquito bites or something similar, but they're not. I have to take allegra every day to keep them at bay. as with most things, I end up having to self-treat symptoms becs none of my docs are good enough to help.

I suspect I could have urticarial pigmentosa, but I'm not sure. it's just me googling stuff.

congrats. the job thing was one of the hardest things I dealth with when I got sick. I'm lucky I'm at an understanding place now. I only work 32 hours a week, and my salary has been cut in half since I got sick.

I went to the endocrinologist and all of my blood sugar tests were normal. not even remotely pre-diabetic -- which is good! however, it doesn't explain the low-blood sugar feeling I get 3 weeks into a diet. he suggested that at 3 weeks in, I may be getting dehydrated because of weight loss causing a ketogenic process to happen, therefore making me dehydrated. honestly, I'm not sure if I buy this explanation, because I've never felt "shaky" and "hungry" from being dehydrated, and food always fixes the feeling.

he prescribed metformin. I took one pill this weekend and it became obvious within 24 hours that I will not be able to tolerate this medication. I'm sensitive to everything. I ended up seriously dizzy, weak and sleeping allllll day.

still obese as ever.

what about wellbutrin? doesn't that act on dopamine?

I couldn't tolerate it. I can't tolerate any stimulant, either, including caffeine or Adderall. does weird things to my brain.

what about ecigs? I know their safety is still not decided, but it seem to be a lot better than cigs.

Hi, I haven't been here in ages. I'll keep it quick.

I'm trying to get rid of a stubborn 80 pounds that I gained on Zoloft. Unfortunately, every time I diet, I feel faint. This most recent turn has been with Weight Watchers. I don't believe I was doing anything unusual. Eating healthy and restricting calories in a healthy way. It seems that I'm OK until about 3 weeks in. Then, suddenly, I start feeling shaky and faint, and the only remedy is to eat more than is required in order to lose weight. Therefore, I am unable to lose weight. Just when I start making progress, I feel sick and fainty. If I push too hard at that point, I'll end up bedridden. When I have a syncope spell, I need 2 months to recover from dizziness. It's extremely frustrating.

I'm concerned that this is a blood sugar thing. I have always tended to be low. I started checking recently, and my levels are good to low. 70s fasting, 80s between meals and about 100 after a meal. I went to the doc, and he's running blood tests (full metabolic panel), and I'll go in for a 3-hour glucose test. TBH, I'm scared to do that, because I'm afraid I'll faint during the test.

Anyway, he suggested putting me on Metformin after we get the test results. He said this should level me out and help me to lose weight better. He said that people who are hypoglycemic when they are younger tend to develop diabetes later in life. I had hypo problems in my 20s. Now, I'm in my 40s.

Anyone have any ideas? Thanks in advance.

I have hashimoto's

Helped tremendously. Discontinued due to weight gain. 80 lbs. have only managed to drop 20 of those

it is not a vasoconstrictor. it helps the body retain salt & water.

florinef raised my BP more than any other drug i took.

thank you for all of your responses, btw

i'm specifically interested in vanderbilt becs it's the closest to me, and by closest, i mean a 9-hour drive. i'm way too afraid to fly. i think i would freak completely out in an airplane, since i can't handle lots of stimulation, movement, elevation, etc.

i've also suspeted a NET problem, since i definitely had elevated catecholamines on a blood tilt. again, would vanderbilt be the place to figure this out ...

well, i wouldn't doubt that this has an autoimmune component, and i've certainly considered it. the quesion is, would vanderbilt consider it? is this something they would explore and help me to explore?

i was told that i have small fiber neuropathy, with some test that apparently no one has ever heard of (psudo scan), so i don't know the legitimacy of this. but my doc said it was because of obesity (which started AFTER my illness, caused by an SSRI). and then he tested me for diabetes, which i do not have. so, i don't think the neuropathy i have is the typical neuropathy that he is thinking. it did occur to me that my neuropathy might be autoimmune, since i have had other autoimmune problems.

the treatment for that apparently is IVIG. i have no idea where to get this or how to go about further diagnostics for this.

There is a great free thyroid summit going on. http://thethyroidsummit.com/tom-obryan-dc-ccn-dacbn/ I think DeGenesis is right about inflammatory conditions. Trying to figure out what is causing the inflammation is a start. I truly believe in looking at the diet.

does inflammation cause POTS?

oh, i've been doing that. thanks.

the research is different than the outpatient clinic. right now i'm just trying to get into the outpatient clinic becs i think i'd have a better chance at being seen. don't you have to meet certain requirements to get onto a research study?

yeah, that's why it's important for me to find the cause. so my question is, does vandy care about mast cell, NET defficiency, or any of the other conditions that cause POTS? i just want to make sure i'm not wasting my time or money. even if they could point me in the right direction, that would be great.

Nov. 10, 2010

i've had a lot of good days, seeming "remission" to a degree, but recently relapsed.

a lot of the names on the forum are different than when i used to visit.

The title says it all. I'm tired of the roller coaster, symptoms, drugs, crappy doctors. I think it's time to go.

Anything I need to know about this place? Are there any docs to avoid? Which one is the best?

I'm hearing stuff about insurance companies denying some of the tests.

What should I expect?

I've already had a blood tilt with elevated catecholamines, 48-hour heart monitor, some type of psudo scan that measured neuropathy (doc said I have it and tried to blame it on obseity/deconditioning) not a true POTS diagnosis (hr went up 20 bpm, not 30), tried SSRI, fludrocortisone, midodrine, beta blocker, exercise, etc., etc. My doc said if i lost weight it would help. I went on a diet recently and had a total relapse, was house-bound for a month. Just a few days ago had an episode in a theater, had to be sat in the VIP area on a couch and wait it out, missed the entire event. Etc., etc., really limiting my activities for years.

I really want to find the cause of the condition and not just treat the symptoms. Can I expect the dr.s there to try to find out the cause?

The lady on the phone said it might take a year to get an appointment.

Thanks.

i should have known the minute i started questioning if it was OK that it wasn't for me. had to leave work last night. feeling fatigued, horrible brain fog, head feels heavy, major dizziness. called in sick today. ketosis is not for me. i just hope this gets better after a few days and that i'm not having a POTS "relapse."

honestly i am not feeling good AT ALL. all of a sudden i feel really sick (POTsie). it's going to be a long shift at work tonight.