arizona girl

To me this actually sounds like a neurological symptom, there is one called adie's. Are they treating your hypokalemia and lipidemia? I read your list of diagnoses and treatment and am trying to figure what is treating what. Sometimes meds can cause unexpected symptoms. Some of the things you've posted could be immune system related or autoimmune, any of which can effect your nervous system. Other then the eyes what is a general list of your daily symptoms?

Oh puppy, I know how disheartening that is, it's happened to me before as well. Ya just wanna give up sometimes. I did that after a doctor said are you someone who looks things up on the internet and there is really nothing wrong with you. Several months later I had a small colon rupture and she missed the signs.

I tell you this because I didn't know I had an infection and with an infection on board you must be treated and can't let it be and hope it gets better. I too get infections and don't know where they are. I have a primary immune disease and I don't run fevers because my body can't mount a defense, even with a rupture I was only 100.2. I can only go by where the pain is, and it is usually my lower right pelvis hip and glut. I have a standing cbc order to check if I have an infection when in pain. If it is elevated my doctor gives me an antibotic shot of rocephine as oral antibotics don't work and are hard on a messed up gi system to begin with.

I've been following your posts and had not had much to add, other then thinking there seems to be something more going on then just dysautonomia, which many times can be the symptoms of some other illness. The test that diagnosed me is called a quantitative immunoglobulin test, along with a sub igg panel, igd and ige. If any of those are abnormal a vaccine challenge test is done. These tests are used to determine how well you immune system is working.

What did your current labs show exactly? Also other then autonomic testing what other conditions have they tested you for and ruled out?

Take care sweet girl, we'll all here to help you figure this out.

Hi guys, this was happening to me on and off since I was a kid. I would feel sick and feverish, but it would never get very high, but my normal temp was low to begin with. After having this low grade fever on and off with activity for years and feeling sickly, my neuro checked my quantitative immunoglobulins, two of them were low.

This means I have a primary immune deficiency called hypogammaglobulinemia or cvid. When you have this your body is not able to mount a normal defense to infections, so you don't get the obvious signs a normal person gets with an infection on board. I now get immunoglobulin replacement monthly. So, now when I have what feels like something coming on, feverish without a fever and pain, I get a cbc done. My wbc count is almost always elevated when I'm feeling this way, my primary now gives me a shot or two of rocephine antibiotics when this happens to knock the infection down, other wise it keeps rising and I could get an untreatable infection once it rises into the 20's which has happened several times. The first time it was documented though was due to a colon rupture, for no real obvious reason, causing infection and a fever that only reached 100.2. IV antibiotics saved me that time. We have still yet to determine where or what the infections are, I can only go by location of pain which is usually in my right pelvic/ab area.

I have a standing mri for the next time it happens.

Primaryimmune.org is a great website to read up on this.

Hyper, Hi I'm on ivig too! I have cvid with low igg and igm and the associated autoimmunes often found with it. Have you been on primary immune.org. They talk about hyper igm on there. So aps too! Have they tested your genetics for mthfr and factor leiden v?

These are found with aps too. With mthfr your missing the enzyme that converts folic acid and leads to some of these symptoms and conditions. Treatment is L-methyfolate and active b's.

How did your first ivig infusions go? My first one was awful, but the switched brands after 4 months and I do okay now, just a headache now. It took a while for improvements to show up and mine has to be done monthly to maintain everything. I had pheresis first and actually responded faster to that, but that is hard to stay on long term.

Oh how I wish I would fit a normal diagnosis of something too! I am forever the square peg trying to fit in a round hole. I getcha on the endo's relying to much on the lab gospels and not on symptoms. I do think that the 24 hour urine for pheo should be ruled out, I had that done as well. Just make sure they check for everything in it. Also my cardio says the 24 saliva cortisol test is the best one to determine cortisol issues. Are they also keeping an eye on your aldosterone and renin considering the addison's comment by your doctor.

I have hashi too diagnosed finally this year. Synthroid lowered my tsh, but my t3 has not budged and I'm actually having more hypo symptoms then before, my eyebrows are fading away. How are they treating your hashi? I also have mthfr gene defect, lichen and undifferentiated autoimmune disease, cvid, and pcos with high insulin. The genetic doc I just saw says I have joint hypermobile syndrome too. AHHH! Though it appears some of these things can be symptoms of the other stuff, so all related in a way.

I did have the cat testing you did posturally per dr. grubb. My norepi was in the 1200's on standing from the 400's supine, my supine epi was slightly elevated and didn't budge on standing and I had no measurable dopamine in either position. I also had low mets. Has anyone ever addressed anything but the standing norepi??? That would be a big fat no, and I wonder about their contribution to my symptoms. My neuro after the positive tilt and high cats did a skin biopsy that showed small fiber neuropathy probably causing the pooling and the elevated norepi in response.

Dr. Grubb had recommended the clonidine, but I'd already been on the patch form and had skin reaction to it, moved to the pills and had an almost addictive body response to it, my body keep needing more and more to keep bp/hr down. Rather scary and coming off of it was even scarier. The short acting low dose labetalol has been the best one so far for me.

Hey, kitt, Your numbers are for sure off and imho have not ruled out a pheo. If your supine norepi was also that high it would point to a pheo, especially if it didn't change from supine to standing. I think I'd be going back to my endocrinologist on this one. The cortisol and other test you described acth stim test are looking at your adrenal function to see if you have an active adrenal nodule/pheo or addison's disease, etc. I don't understand why a cardio is doing these tests, as an endo would be more equipped to deal with this as it is their specialty.

This is why the postural comparison is so important. If it is changing with posture, less likely to be a pheo, but it also doesn't rule it out. The low epi and elevated dopamine also may point to something. I think that you endo is probably going to want to do further investigating on this. Only good thing about a pheo is it is curable once it is removed. I almost which that had been my solution, as I do have an adrenal nodule.

Hey, Rama good to see you again. There is another aussie here named matt green, who pm'd me and had mentioned he'd like to know who your docs were there. Maybe pm him.

Actually, Grubb is looking at mcas as a cause and an interview with he and patient about it was recently posted here.

I take short acting labetalol 50 to 200 mg, depending how bad my symptoms are on a given day. These are baby doses for this med and it's an alpha beta that is suppose to help supine from getting to low and standing from getting to high, I have the hyper form of pots that causes very high standing bp, which can trigger presyncope if it is up there to long, or I'm in a triggering environment.

I took a lot of the others, I gained weight on propanonl and it really jumped up with a higher dose of it, and the fatigue was awful. Atenenol lowered me to much when supine, most of the others were just unable to bring my standing blood pressure down, but that was before we knew what was going on.

Yup, Eyes, nose, mouth, skin and girl bits. I have hashi thyroid, symptoms of sjogrens and lupus, been told it's undifferentiated connective tissue disease cause I don't meet sjogrens and lupus fully. Any of these can cause these symptoms I have no idea which one, on top of that I have sf neuropathy and vaginal lichen planus.

We are trying to treat, but I'm still gritty dry.

Oh goodness, how awful for you. I understand why your questioning. If you never have symptoms of the manic phase, how could it be bipolar, depression or anxiety maybe!! From what I understand there are definitive laboratory testing that can show bipolar, one of them I think is a thermal brain scan. Have they done any kind of testing on you that assisted the doctor in coming to this conclusion?

There is also a genetic test that I recently found out about that if you test for it in a certain pattern you are more prone to depression and bipolar disease. The treatment for it mainly is taking the active form of folate called methylfolate, also adding in methylb12.

The test is called the MTHFR gene test. They also check for recurrent miscarriage and those at high risk for cardiac disease. It can also cause birth defects like spina bifida, cleft palate, I think.

Trust your instincts, I think we all no intuitively what is right, as long as we are willing to be honest with ourselves. The good news if it does turn out to be bipolar they are very good at treating it now and there is all kinds of support. But, who would want to take those medications if the diagnosis was incorrect. Life changing though if you do need them.

If it were me I'd insist on unsubjected diagnostic testing before excepting this life alter diagnosis. Have they prescribed you meds yet?

For me all these are equal, on standing fatigue, body pain and and in a warm enviornment I can't control my body temperature and feel awful. I also have a lot of right abd/pelvic pain. I'm hyper though not hypo. I only get those hypo symptoms right as I'm having a presyncope event, which thankfully doesn't happen often, but will happen with heat, motion and/or exertion.

Thanks for adding. You'd also be surprised at how low some of our resting heart rates are too. Yes my vote is with labetalol on board, but we are also treating my immune and autoimmune conditions and those treatments have also improved it. I was much worse before treatment. Many of the long timers here have been on treatment for awhile.

If you'd like to you could also add that question, are these heart rates with or without treatment.

I don't know your medical history or symptoms. I also had trouble with medications lowering me I went through a bunch of blood pressure meds that my body would overcome eventually, because my blood was pooling and my body was trying to force blood up to the brain by raising my blood pressure and constricting my blood vessels to do so. I then would become hypotensive/brady when supine.

Labetalol is a short acting alpha beta so it effects both responses.

I agree knowing your standing heart rate, unless it is very high, is only half the picture. My resting heart rate is in the low 50's and has gone lower. Though my standing was going to 100-115's before diagnosis, when you look at the rise from the 50's to 110, that is a huge swing.

My sitting hr in 90's didn't ever attract attention. My point if you start in the 50's and only go to the 90's that still is a big rise, and can be missed.

I still every morning before I move or sit up check my bp/hr will supine, then I have my baseline for the day. Though day to day it is pretty consistant on waking. I just wish it was that perfect when I stood. I used to get brady and hypo during sleep, so that is better now.

I'm usually worse between ovulation and the first day of my period. One thought though, do you bleed a lot? If you do you may be getting anemic which can also cause similar symptoms that you are describing.

I'd say though most of us women have some kind of flare during the month associated with our cycles.

One thing to check when this happens is your bp/hr, without getting up or moving to much. It may be that the blood pressure and heart rate are dropping really low and your body is trying to bring it up by doing these things.

I was waking up rigid with low bp and hr. That is was when it became apparent that the atenonol I was on was staying too long in my system and further lowering my bp/hr when I was supine even further.

Switching to labetalol to help with the postural swinging has helped with this. I'm on the short acting form and now only take it when I rise during activity. Though I can still get up there and laying down always brings it down as well, it has been better. I still have the night sweats at times but they appear to be associated with infection or hormonal cycle.

No worries Kit, just didn't want to misinform anyone. His e-mail address link is at the top of the article.

Who thought you were a male?

Yes, I'd say Dr. Lowe is the lead dysautonomia doctor there, that is why I found it interesting that Lowe's stamp wasn't on the article. I had several doctors say I needed to go to lowe, he wasn't on my insurance, but Vanderbilt and Dr. Grubb were so I saw them, both were a very long wait though.

As I said before I do think politely letting the doctor know our thoughts on his article and asking him why he hadn't included grubb's articles or more of vanderbuilts, certainly couldn't hurt. The trick is to get him to hear us without him digging his heals in.

Well that is good get all those records and read the test results yourself. I agree and support you that you need to pursue this further. First, though you need to research those records and see what you find. Did they biopsy that liver tumor and that is how they know it's benign?

The fact that you get hypotensive with the pots is common together and is one of the forms of dysautonomia we see here.

Maybe post about that and the allegies and flushing. You will get more comments and support that way. Cardiac enzyme issues aren't to common on here, so you will get less response to that one.

Keep us updated.

Well that is sort of scary. Are you out of the hospital? That is associated with heart attack or heart virus. What have your doctors told you? Have you had a chance to read your own hospital medical records yet. There will notes under all the docs names that treated you as well as the hospital records. Hospital records are great, as all you have to do is request them directly without going through a doctor. You'd be surprised what your not told and what tests they did.

Pots itself can be a secondary symptom to another condition. Did they ever figure out what brings on your syncopes? Also interesting that you have hypo blood work. That has all got to mean something and is sort of unusual.

Which I could help but your post raised more questions then answers.

FYI, I didn't say he didn't see patients, I said he may not see patients, as he is a researcher. He may see patients during an active study, but I didn't see that he was part of one.

What is important about his review of the research studies, is that it doesn't include dr. grubbs published articles and it doesn't include the psych study done at vanderbilt that showed anxietly and depression were no more common in our population then the community at large. Also, while pots is a syndrome, dysautonomia which pots is under is not considered a syndrome.

Which could explain why some of the larger medical centers are studying it. We do have access to this doctor's e-mail. Perhaps in a polite manner, some of us could let him know the flaws in his research, maybe we can turn him to our side.

Yes, it really does sound more like he is working you up for a pheo. Which actually should be done as part of this kind of workup. If you did have a pheo, it is actually a curable condition.

Kitt, did they do the supine portion of the test or only the standing? The point of supine to standing is to compare the differences from supine to standing and you are suppose to be laying down for at least 20 minutes before they draw you.

Agreed, I think that is why we all are particularly upset that this would get out to nonmayo doctors who don't have the background to challenge this guys hypothosis.

He is just a researcher, I looked him up. I don't even know if the guy sees real patients. Many of the articles he has sighted, even by Dr. Low who he has worked with don't support his conclusion. It is also interesting that he is on this article alone, without low or anyone else. He may be getting paid to give an opinion, as he has many citations on all kinds of different medical conditions. You can see what he has written about under his mayo bio, which says he's a researcher.

Katy, that is exactly what happened to me. Been testing me for years for thyroid disease and told I was normal inspite of thyroid nodules and classic symptoms. My tsh was normal, so I couldn't have thyroid disease!! Well a rheumy working me up for sjogren's did a tpo/ab antibody and low and behold they were elevated. My endo started treating me and we are still working out dosage, it is not right yet in my opinion, but it has only been six months. I have though lost some weight.

My experience with azmayo was fairly poor and it was apparent to me that they have a hard time letting go of diagnostic standards that have been proven outdated. An endo I saw there years ago undiagnosed me with pcos, that had been well documented by several local endo's, fertility doctors and was supported by diagnostic ultrasounds and documented hyperinsulinemia.

Mayo had not come to the place and accepted that other medical research had proven that pcos was a result of elevated insulin; which in spite of treatment, though better, is still elevated in me. I've been treating this for years with glumetza by another local endo. Thank goodness I was smart enough to consider his opinion wrong.

It is important to remember a doctors diagnostic opinion is just an opinion and many times another doctor looking at the same diagnostic medical results will come to completely different conclusions. This is why it is very important to trust your own truths and instincts. After all aren't we the best experts on ourselves.

One more thing to consider about your plans family deductible out of pocket cap. Though it list total for the family there are usually lower numbers per family member. So, I met my individual deductable and cap, but my husband has not, as he is healthy. I think mine was 1,500.

I can access all my plan information on line, many plans can. If yours does you can read everything there and even see your claim history.

I was so excited to read the article and at first thought good he's hitting on some of the known causes and then he wraps it with it's all in your head. It was so disappointing. Especially since vanderbilt already did a study on this and found that anxiety and depression are no more common in this population then the rest of the population.

It also appears that his research is based on evaluating existing studies and this is only his opinion or his perspective of the data he collected. I didn't see much he researched or authored himself.

At the bottom of the article the studies he used are listed with links to them, there are a few that are psych in nature, I haven't had time to read them yet.

I don't know if any of you noticed he can be e-mailed directly from the article. Maybe it's time the patient's gave him an education from their perspective.