Birdlady

Total cortisol in blood may not be that reliable. It's better to figure out your free cortisol levels because that's what is actually available for use. Different medications can cause your total cortisol to be artificially elevated too. So In my opinion just checking total cortisol in blood doesn't tell you much of what's going on. Get that paired with ACTH and a free cortisol to get more useful information. My total cortisol was high yet my saliva results were terrible with an elevated ACTH. I also think the needle jab from the blood draw can cause a spike in the cortisol reading too. Any time I had my cortisol checked, I was always really stressed out by the incompetent phlebotomists. haha

I'm the person the other posters are talking about! =) I wish I could say that hydrocortisone was a miracle POTS drug for me, but it wasn't! I know some people with Addison's who were first diagnosed with POTS via a tilt table test and now that they are treated for Addison's, their POTS is completely gone. So I think it is possible, but don't get your hopes up. Just remember that cortisol replacement is for life if you have a true adrenal problem. I've been trying to wean off the hydrocortisone and a lot of old symptoms started showing up again (nausea, extreme thirst, diluted urine, getting up to pee at night, darkening of the skin around my eyes and joints, hot flashes, night sweats and a whole slew of other weird problems), so I have decided that I really do need this and need to get over my steroid guilt. My adrenals are likely suppressed as the result of the medicine, but they also weren't doing enough without the meds either. As of yesterday, I am back on my regular dose and have to accept that HC did not fix POTS, but it has helped me in other areas. At diagnosis I had mildly elevated ACTH levels which points to a primary adrenal problem. I also had some signs of late onset congenital adrenal hyperplasia too with mildly elevated 17 OH progesterone. Most people I see on the "natural hormone" adrenal forums, do not have elevated ACTH and the problem is not with "weak adrenals", but rather a dysfunction of the secretion of ACTH or CRH in the pituitary or hypothalamus. During a stim test, these people would more than double and look very normal because once they are given external ACTH their adrenals start producing tons of cortisol. People with results like this and with no trauma to the pituitary gland itself, should look into underlying causes before immediately trying HC (latent infections is the first thing I'd check for). This doctor is considered one of the best for adrenal disorders. http://www.goodhormonehealth.com/ If you are the researching type or like to read about problems in depth, then check out this PDF. I don't agree with everything in it, but it's a good mainstream document that has everything you would ever want to know and more on the adrenals and how to diagnose and treat too.

It should be done early morning like 8AM, and yes I would be fasting for it. As far as carb loading, I don't quite understand that one to be honest. You should insist on getting the low dose stim rather than the standard. It is more sensitive. Here's a study that talks about it. http://jcem.endojournals.org/cgi/content/abstract/83/8/2726 I'm not sure if florinef would affect the results. Make sure the doc knows you are on it though. I would insist on testing a baseline ACTH level from you too (before injection obviously). That way if results are borderline it helps to make a diagnosis. If you don't mind, could you post your results when you get them even if they are "normal"? Good luck!

Very good advice!!

The only way I've been able to flip my schedule is by going to bed later and later over the course of a few weeks. In fact, I just switched my schedule around last week sometime. I was going to bed like you at 6-8AM and now I'm finally waking up at like 5AM. It took a while to do this of course and the worst schedule is when you are waking up at 8PM! haha

@sue Yes if you more than tripled, then I'd get a morning ACTH level checked and see if you can find an endo who understands secondary AI. Not many do though! @issie If you decide to go down that path, I am more than willing to help you out. I have been weaning off hydrocortisone and currently I'm on a really low dose at 15mg daily. I used to take 30mg, so I am already at half my old dose. I split the 15mg throughout the day, so it is more natural to what the body does. My cortisol was really bad when I was tested. My ACTH was also elevated, which points to a primary adrenal problem. So maybe I do have adrenal issues independent of the POTS. Like you said, I really won't know until I come off of the HC which might take months. When you go on HC your CRH and ACTH are suppressed, so it takes time for them to restart again. Some studies show it can take up to a year for that to happen, that's why going on HC isn't something to take lightly! You essentially make yourself adrenal insufficient. You also have to worry about stress dosing and wearing a medic alert bracelet at all times just in case something happens and you can't speak for yourself. It isn't fun.

@TXPOTS-I'm glad that your doctor knew to do the renin and aldosterone tests while under salt restriction. I'm impressed! @Issie I know that you've been reading stopthethyroidmadness. I post on forums run by people who gain their knowledge from the site and while it is good information, they do not understand POTS at all. Years ago, I was one of the few who posted on their yahoo groups with severe POTS. Now more and more people are showing symptoms of it on there! The mods would tell me that I just need to add in a little salt and to increase my florinef and all will be well. Even to this day I have to explain that is not necessarily true at all. You can't explain severe POTS to someone who doesn't have it and they do not understand that it is way more complicated than adding in a little hydrocortisone, salt and florinef. If it were that easy, then we wouldn't be here!! A lot of us are replacing "aldosterone" by taking florinef. It is not bio-identical but it helps the body to retain sodium. Ingesting large amounts of salt without taking florinef is pretty useless because you will be excreting all of that sodium in your urine regardless of how much you take. Low aldostone=salt wasting. That reason alone is why I'm pretty much against salt loading. However, when you add in florinef with salt, then that combo makes a lot more sense because you will start to retain the sodium. Some people however, do not need sodium because they tend to go hypernatremia which is seen in diabetes inspidus. I have one of those diagnoses too, but replacing ADH with DDAVP has done nothing to help the POTS. Sure I urinate less on it, but I don't notice anything else, so I stopped taking it since it wasn't severe. I still question that diagnosis any way. Last year, I thought cortisol was the key to my answers as well. Because I started researching as you have been and the pieces seemed to fall into place. I hypothesized if I got on hydrocortisone to replace low cortisol levels and went on florinef, then I'd be fixed. I also saw forums that focus solely on adrenals telling me the same thing. I was excited and couldn't wait!! For the first 1-2 months I felt good and had more energy, but after those initial few months things got worse and worse. I had more energy but what good does it do me if I can't stand up to use it? LOL Then I was told it was my thyroid, then sex hormones, then it was my ferritin blah blah blah. I was told it was more and more. Looking back I wish I had been less trusting because I spent another year of my life going down a path that made me feel worse. My heat intolerance is worse than ever. My HR increases upon standing are at least doubling these days and my overall quality of life has dropped significantly. I have a hard time admitting to myself that I was wrong about all of this. There is probably a tiny percentage of people on here who have true Addison's Disease and would benefit greatly from hydrocortisone replacement. The problem is finding an endo that knows how to interpret the stim results. If you don't double, then that means you are Addison's or if you don't hit 20 then that means you are Addison's too. However if you have secondary adrenal insufficiency due to pituitary issues, then you won't only double from the baseline, but likely triple or even go 4x's. Most endos don't understand how to interpret results like that and will tell you all is "normal". To recap, I have tried DDAVP, florinef, high doses of HC, low doses of HC and even that bio-identical aldosterone. Even while taking all of those meds, I still had POTS. I hope that you find relief in replacing cortisol, aldosterone and whatever else you decided to pursue. I'm just letting you know that it wasn't the answer for me. I wish it were that simple.

In my experience, cortisol replacement has done little to nothing for my POTS. In fact I think at times it is has made it worse. It does not tame down the NE dumps I get from standing. If it did then my tilt-table test should have been normal and my plasma catecholamine that were taken within 30 minutes of a stress dose of hydrocortisone would have been low or normal. So from my own experience of stress dosing during these NE dumps (up too 100mg of HC!!), I do not believe that the NE surges we experience is coming from the adrenals whatsoever. I've been taking hydrocortisone for over a year now for adrenal insufficiency and I doubt there is much function left of the adrenals. People with no adrenals at all still have norepinephrine in their systems from the CNS with non-detectable levels of epinephrine since that one is only produced in the medulla. Here's a study done on sheep that supports that. Those on glucocorticoid replacement actually secrete more norepinephrine than normal controls, so maybe that is why I am worse off these days. Because of this, I am trying to wean off of the HC if that's even possible at this point. Even still the word "adrenergic" is not referring to the adrenals. It is referring to the noreadrenergic neurons from the nervous system as described in that snippet from wikipedia. Some doctors say that low renin and low aldosterone can in fact mean hypopituitary function but according to this old study it doesn't appear to be related to ACTH or cortisol deficiency. http://www.ncbi.nlm.nih.gov/pubmed/518024 By ingesting salt, you aren't stopping aldosterone from working. It is doing what it is supposed to do by suppressing itself. One of its main roles is retaining sodium, so if you are ingesting more than needed it will reduce itself and allow your body to excrete it. If you stop ingesting sodium, then it will rise as needed. I'm not one who believe in taking all of this sodium. I don't really think it does anything, personally especially since most American's diets are already quite full of sodium in processed foods. If you haven't had aldosterone checked while under a strict salt restriction for at least 24 hours, then I don't think you can determine what is happening with it. There's no way to interpret the results if you are ingesting salt. Since your cortisol levels were low, an ACTH stim test might be something to think about and you could also check for adrenal antibodies and 21-hydroxylase antibodies.

Renin signals the release of aldosterone. If one does not have physical destruction of the adrenal glands (which I assume most of us don't), then our bodies should be receiving the signal (renin) to release more aldosterone. Since a lot of us tend to be hypovolemic, then it does not really make sure that we would have both low renin and low aldosterone. It is like our bodies aren't even sensing there is a problem. Hopefully that makes sense? My renin wasn't particularly low, but I also followed a salt restricted diet when I tested both aldosterone and renin. That's the best way to test for it to see what your body CAN produce when it's put to the test. If you are testing aldosterone and renin while supplementing with 4-5 grams of sodium, then it should be suppressed down to almost nothing. That's not abnormal at all. One thing that I wanted to correct you on that is a pet peeve of mine...haha You said: The "adrenergic POTS" has nothing to do with adrenal function. I see this said a lot and it makes me go nuts. Sorry like I said, it is a weird pet peeve of mine! hyperadrenergic POTS is when the CNS is signally too much norepinephrine upon standing. I doubt the NE produced in these cases is even coming from the adrenal medulla. However there's no way to test where NE is coming from as it is chemically the same in the blood whether it comes from the CNS or adrenals. It is not adrenal pots, but rather adrenergic POTS as it is referring to the beta-adrenergic receptors in the body and NOT the adrenals. I have tried the bio-identical aldosterone you listed and it did absolutely nothing for me. It's pricey too and not really feasible for most of us. I think it cost me about $200 for a 1 month supply!

I agree that your lawyer was pretty on top of it and knows their stuff! I'm really happy for you. Sadly I have been sick for so long that I will never be able to qualify for payments unless I apply under my spouse's work credits, which likely complicates things even more. I got sick pretty young, barely making it through jobs, so I don't have enough work credits to apply under my own. How crazy is that? I've seen the video you posted before and it looks like we have similar symptoms/problems. Good luck and I hope you can figure out how to feel better!! Let me know if you do because I'm running out of ideas. haha

I forgot to list the foods I avoid. DOH! Lactose intolerance-I am finally getting better now that I've avoided other allergens for over a year. Gluten, wheat, rye, barley, oats-This includes anything that says "might be processed in a facility with wheat". If you go gluten free you have to be 100% gluten free, which means throwing out all condiments that could be contaminated, cutting boards, strainers, toasters etc. If your entire household isn't gluten free, then it's nearly impossible to do it right. Eggs-Both the white and yolk. Baker's Yeast and brewer's yeast. This excludes foods most wouldn't think of. Alcohol, ALL vinegar which gets rid of all salad dressings, olives, pickles and nearly all condiments, anything fermented or brewed, grapes (wine too), figs, yeast extract (flavoring in foods), no breads, but that's already gone since I'm gluten free too. Tomatoes-This would obviously include ketchup, pasta sauce and most condiments. Strawberries Blueberries Garlic- I really love garlic, but it makes my stomach soo upset. I need to be better at avoiding this one. Yes I have noticed a difference in my non-pots related symptoms like chronic diarrhea and unexplained rashes. My stomach rarely hurts these days and it used to hurt, feel bloated and full on a daily basis. I'd have diarrhea for 2 days, then feel constipated for a few. Rinse and repeat. All of that is gone.

I got an IgG allergy test completed, which tested like 100 foods and I just avoid the foods with the highest reactions. For me it was a lot of stuff. Prior to this though, I eliminated all processed foods (no more packaged pizzas, frozen meals, fast foods etc) and all food additives including high fructose corn syrup, artificial sweeteners (which are found in the electrolyte drinks) and MSG in all of its forms. I eat a pretty bland diet, but at least I know the POTS isn't from my diet! My gut has improved significantly since eliminating everything I reacted to also. I've slowly been adding dairy back into my diet and it's been ok. As far as POTS symptoms increasing with certain foods...I have never noticed that. If I eat a really large meal, I'll be more symptomatic simply from the blood flowing into the stomach to digest.

Those of you with "high NE" levels what are your actual levels if you don't mind me asking. I never really see people talk about that on here. I know that Vanderbilt's criteria is very specific and one must have NE levels >1000. Then I've seen some people say they just have to be >600 to be considered "hyperadrenergic" Thanks.

I don't get yeast infections, but I eat a pretty restricted diet.

A normal TSH doesn't mean your thyroid is normal, but you need to do your own research on how docs test thyroid. I don't want to get into a debate about it. Basically doctors test a pituitary hormone to see if your thyroid is working, never checking the actual thyroid hormones. It's bologna. I wouldn't assume normal is normal with the thyroid unless you've seen the results yourself. The lab ranges on hormone tests are way too inclusive. And as for your allergist saying it's not worth testing, well I don't agree with that either but that is something you'll have to decide. The fact you have gastrointestinal symptoms is enough of a reason to test. You didn't even mention in your first post you also have hives!! I had unexplained rashes/hives that would come and go as they pleased for months. I was miserable! I could never pinpoint what the heck it was from. I had people on forums telling me it was probably a food allergy. Well I didn't get anything checked until a year later. I had a doctor specifically order an IgG allergy panel which are different than what most allergists order. It came back with a ton of food sensitivities (baker's yeast, wheat, dairy, tomatoes, eggs, blueberries, strawberries). Now that I eliminated those foods, I don't get those rashes/hives anymore. It's been over a year now. The only time I get them is if I acidentally eat one of those foods and/or if I want to experiment and see if a food is still bothering me. The rash will appear within 8-10 hours of eating the food, but can take as long as a week to show up! The air hunger you described is a pretty classic hypothyroid symptom by the way.

Issie is right! There are so many other things that can go along with POTS. In addition to her list of things, I'd also check your thyroid and be checked for food allergies and food sensitivities.

My MRI's have always been normal too.

That usually indicates iron-deficiency anemia, but there would be other indicators on your test too like low MCHC and low MCV.

Me too! haha

Unfortunately I can't tell you it gets any better... I went to a specialist as well and was immediately accused of lying about my HR's. Why would I do that? Thankfully though my TTT showed them exactly what I was describing so it shut them up. I don't understand why doctors treat us so poorly. I'm sorry for what you went through and I hope that they can help you to start feeling better. Today is a bad day for me as well.

My guess is dehydration too, but other indicators for dehydration were not found in my electrolytes those mornings. Usually sodium should come up a bit (143 ish)and your BUN/Creat ratio would be on the high end of normal like >18. My doctor just said it's hemoconcentration and to not worry about, which I disagreed with since I had been on DDAVP when this started to show up! How can you be dehydrated on DDAVP?

I probably should have added that I've had high HBG and HCT before too, but I don't really check my CBC very often to know what's been happening recently.

It's better to test urine methylmalonic acid for B12 deficiency especially if you've been supplementing with it. I take daily injections of B12 yet my MMA is still always high. My body can't get enough of it! lol I don't even bother checking my B12 levels because it's not reliable at all for me.

Thank you very much. Interestingly I just found out my 20 y/o brother is going to the doctors tomorrow because he's been having heart palps, dizziness and near fainting upon standing. This is a new development for him and that's exactly how mine started. Edit: There was one thing that caught my eye on the site you linked. In one of the videos on there, it said that people with FOD have to be careful with aspirin. Do you know why? I cannot take aspirin (even in tiny doses) as it gives me temporary hearing loss in either ear for up to 24 hours after I take it.

Very interesting! Thank you so much for all this. I have not had the acylcarnitine profile, so maybe I'll look into this. I assume it's a test any doctor can order. I had no idea that MCT oil could help with this. I started taking coconut oil a few days ago and it coincided with the heart palps going away... I discontinued the supplements too.