Birdlady

Metoprolol is really good for me if I take it sporadically. I cannot take it on a daily basis though as it tends to lower blood circulation and I develop chilblains on my toes which are excruciating. I was unable to wear shoes of any type when they were at their worse. I was on it for 4 or 5 months until these bad side effects started to show up. During the summer it did not do much for my standing HR's and the heat intolerance was just as bad as ever. Because of all those factors, I discontinued using it.

Saying that you can have some gluten because you are only "gluten sensitive" is blissfully ignorant in my opinion. Regardless whether you have Celiac or a gluten sensitivity it is negatively impacting you and I feel you should be watching cross-contamination no matter what type or level of sensitivity you have. If you are using a toaster that has toasted bread it is just asking for trouble. How will you ever know if any lingering symptoms are still from gluten? We threw out our cutting board, strainer and toaster oven and started over again. I recommend reading this. http://www.dummies.com/how-to/content/the-essentials-of-sharing-a-kitchen-with-gluten.html I treat gluten as if it were poison in this house. You wouldn't let poison into your house no matter what tiny amount it may be! Edit: I thought of a better example. Pretend gluten is raw meat. You wouldn't let raw meat touch something you were about to eat that is not cooked. You also must clean any counter tops that came in contact with the raw meat too. Gluten should be regarded like this. I have heard of some people who have no symptoms with Celiac, yet those with gluten sensitivity are much worse, so it depends on the person for sure. I don't think I am Celiac and maybe not even gluten sensitive, but overall it is better way of eating as you are forced to remove all processed foods from the diet and start eating meals from scratch. We do not replace pasta or breads as I find I'm never happy with the GF versions. I've also recently given up all grains and sugar too. I'm quite happy with the results thus far, but it has done nothing for POTS. My POTS is separate from the other symptoms I experience and do not lump them all together. My POTS is not better, but as I said my digestion is so I have stuck with it for this long. I figure anything that might trigger a response from my immune system needs removed from my diet. The most helpful thing I've removed is actually all forms of yeast. My husband got genetic testing done through Enterolab and he has two genes that point to gluten sensitivity. His stool test showed very high antibodies to several gluten markers as well. I went gluten free for him because it is nearly impossible to be gluten free in a house with others eating gluten. There will always be the risk of cross contamination as people who aren't also watching for allergens and sensitivities don't care or understand the importance.

My husband and I have been very strictly gluten free for over a year now. I don't think it's done anything for my POTS, but I believe my digestion is a bit better. I still have issues and don't know what else I could restrict at this point... When you go gluten free, you have to be completely 100% gluten free. I recommend watching out for cross contamination too. To truly know whether or not it's helping you have to clear your kitchen out of all gluten. Throw out old condiments that could be contaminated with wheat from a knife or spoon. Your toaster probably needs thrown out too because of the bread crumbs inside. I'm sure there's many websites that can give you some pointers on how to be gluten free. Ashelton80, There's some debate whether or not wheatgrass is safe for those on gluten-free diets. Might want to look into that more. Edit: The more I look into it, wheatgrass is NOT safe on a gluten free diet. The risk of contamination is extremely high.

I can have a good day yet still have HR's in the 120's. For me it's the shortness of breath and heat intolerance that makes me feel awful. High heart rates don't normally bother me until they reach 130+.

As far as I know I'm mostly German and Austrian.

You said that your POTS started following the birth of your son. Was this a difficult labor where you may have lost a lot of blood? The reason why I ask is there is a condition called Sheehan's Syndrome where your pituitary is damaged during labor. You can search google to get more information about it. Here's the wikipedia article though for the most basic info. http://en.wikipedia.org/wiki/Sheehan%27s_syndrome

You may want to research the folate trap. This happens when you don't have enough B12 to use it, so it just sits in your serum blood levels. Here's some information on it. It's technical though. http://emedicine.medscape.com/article/200184-overview Once a person starts supplementing B12 your blood levels will almost always be very high (above range), so to truly test your levels it is recommended to get a urinary methylmalonic acid checked. This is a sample that can be done at labcorp or quest. I just had this done to make sure my B12 therapy is enough and/or working for me. There are many different forms of "folic acid" too. Most websites recommend taking one of the active forms rather than straight folic acid.

Sounds like you are doing a lot of things, so I commend you. I've done a lot of stuff over the years for my health, but sadly nothing has helped me. I have removed my amalgam fillings, did a little bit of chelation (I need to do more), eat no MSG, artificial sweeteners, gluten, dairy, yeast and refuse to eat any processed foods. I haven't eaten fast food for at least 4 years now. I've been diagnosed with adrenal insufficiency, but treating that has done little for the POTS. I've tried countless approaches and have yet to figure out what is making me sick. I have high NE levels, so beta blockers can be helpful if I'm in a pinch and need some relief. However, I don't like taking them on a daily basis because it's not real. I want to be truly fixed at some point. If I take an RX that hides my symptoms, then how do I know I'm actually getting better when I try a natural approach? The answer is that I don't. Maybe I'm sadistic but when I feel my heart racing it gives me motivation to keep researching and going. For some reason today is a really bad day for me. I experimented with making my own kefir and yogurt and while it's supposed to be this amazing thing, it made me so very ill. That's another thing I can cross off the list. haha I have a hormone doctor guiding me, so I can get anything tested I want as he's really open-minded. I will find a cure for my POTS! I cured my alopecia areata, so I have faith that this can be done.

I believe there is a cure for POTS and CFS though, we just haven't figured it out yet. I've ruled out more serious conditions and keep looking for more info and things to try. Edit: Some people have cured their CFS btw, but it's not an easy thing to do and it takes years and dedication to figure it out. What type of supplements are you taking that are helping?

The problem is that all POTS doctors care about is treating symptoms. They are not looking for causes. I know I'm the minority here but I absolutely refuse to be placed on SSRIs, anti-depressants and adderall because I know that's not is wrong with me. In my experience if increased salt, florinef or a beta blocker doesn't work, the doctors won't know what to do with you and honestly you are probably on your own to figure out what is really wrong. I've been at this for years and intend to figure out the true cause of my POTS. I've figured out other health problems of mine, so why not POTS? It takes research and a lot of dedication to figure something out like this and I doubt it will be cured by popping a pill.

I have thought that vaccines could have been a trigger to my problems not specifically the Hep B vaccine. However, I cannot confirm that because my pediatric records have been destroyed. I called around all of my doctors to see if anyone had my records from age 10-17 and they are lost forever. I can't remember if I got a vaccine, but it wouldn't' surprise me. Just to throw this out there, do you know if your son got the thimerosal-containing Hep B vaccine? It used to have mercury in it years ago and I found out that I would have gotten it with the mercury which was known to cause a lot more complications apparently. I personally am against taking any and all vaccines now. I refuse to get them and lie to nurses when they ask if I've had a flu or tetanus shot lately. It's none of their business!

Hi Avidita, Of course it is not the same for all of us. If it were that simple, then we wouldn't all be here very sick trying to look for answers. Considering that the majority of Americans are overweight these days, I think the fact most of us are under 25 BMI is quite significant, so my reply was simply just a follow up to what the poll shows. We also have to remember that being a normal weight or even overweight does not mean you are not deficient in vital nutrients. People are eating more and more foods which lack any sort of nutritional value as their main source of calories such as soda or fast food for instance. I remember reading a news article years ago saying that they are finding more and more thin people have high concentrations of visceral fat around their organs. I actually found the article here http://www.msnbc.msn.com/id/18594089/ The other thing that spurred my comment is that the poll also shows most of us have digestive problems of some type. I think this is highly significant issue that doctors are overlooking. I know that others don't feel this way, but I'm pretty much done with these so called POTS doctors. They aren't doing anything to help us get our lives back. Polls like this are great to see where we all stand and to see what problems we have in common. The best test to get done to determine your nutritional status is through urinary amino acid and organic acid testing. Some of the blood tests for nutrients aren't all that accurate if you look into it.

I think the underweight issue is a symptom of whatever is wrong with us. We aren't processing our food and absorbing nutrients properly, so we are constantly in a malnourished state.

Reading that actually depresses me because I fit all of those-- Post viral onset at a young age, yet 10 years later I'm still here getting worse and worse every year. None of the POTS doctors I have seen care at all about looking at underlying conditions though. On paper a lot of these docs sound great, but I find they aren't all that good when you actually go see them. I'm not specifically referring to Dr. Grubbs here, so don't take that as a jab against him. I think I'm in the lifetime category too, but no where near normal functioning!

Yeah I have/had high lead levels in my hair. I found out it was from my bathtub of all things. The finish on it came off and I bathed it in for years! Sadly I had POTS well before all of that, but I'm sure it didn't help me.

Not to bring the topic down, but honestly I'm not that hopeful. I think this illness will be with me my entire life and I first had symptoms at the age of 16. It has been 10 years and I am only getting worse. Those doctors who say recovery, I wonder what's their criteria? If I can't live a normal life, then I would not consider a person recovered. You have to watch out for their definitions of "recovery" because it likely means something totally different than what we would think. I think we are on our own. The researchers haven't been doing a whole lot in my opinion to get to the bottom of this. All of my POTS doctors are quite honestly useless. If a SSRI, beta blocker, florinef, midodrine and increased salt intake doesn't work they really have no idea what to do with you. You are stuck dealing with symptoms, so I just don't see how Mayo can say a 90% recovery rate. That's pretty unbelievable to me. I'm sorry I'm not more optimistic, but I see no new approaches coming out of these research facilities.

Have you ever had your B12 levels and a urinary MMA (Methylmalonic acid) checked? It could be a b12 deficiency. I have to take daily subcutaneous injections of B12 (2500mcg) or the numbness and tingling will return within a week or 2. What you described is exactly what I get too. It's almost like a sunburn, tingling and stabbing feeling on the skin. My left leg starts to go numb and falls asleep very easily too. The B12 injections take all of that away though so I've stayed on them regardless of what my serum levels look like. If you already supplement with B12, then you have to get your urine methylmalonic acid levels checked as serum levels will be falsely elevated and look normal. B12 serum levels under 400 is too low.

Every relationship (whether you are sick or not) has up's and down's and can fail, so I'm not really sure how to answer this poll to be honest. I've been married for almost 7 years now and have been sick with POTS the entire time. I just didn't know what was wrong with me back then! I've gone through times where I'm better and then worse. Of course it can create problems, but if your spouse/bf/gf/partner loves you then there are always ways to make it work. Lots of compromising happens. Sadly over the years my husband hasn't been feeling so good either, but we try to support each other. When he was healthy and I was sick, sure he didn't understand sometimes. Now he's pretty much amazed at what I can still do with POTS. There are days he's sicker than me!

On the natural websites I've seen, they say you should never go above 140 any time after eating or drinking that solution for the test. That's what I personally aim for. I find that natural websites are more about preventing disease and diabetes from even starting, rather than reacting after the fact which is what mainstream medicine does in this country. Without ranges on those insulin results, I have no idea if those are bad or not. If the doctor is concerned because they are high that means your pancreas is putting out insulin, but your body isn't sensitive enough to get the blood sugar levels down. That's insulin resistance and your test is proof that even if your fasting numbers look good, everyone should be getting at least a 3 hour GTT done to see what their levels are postprandial. This can all be controlled with a good diet. I'd buy a monitor and see what foods give you the most BS spikes and avoid them. Good luck.

The dose of armour you are on is very very low, but you should get your thyroid levels checked just to make sure. Try to get free T3 and free T4 levels checked along with total levels. This will give you a better feel for what is going on with your thyroid. I just want to throw my experience out there for you. My doctors insisted I must be hyperthyroid because of my heart rates too. They tried to basically push this diagnosis on me when they couldn't figure out why a person my age would have tachycardia so much. It just so happened that my TSH was nondetectable for a short time for reasons I will never understand. However, my actual thyroid levels were in fact on the low end. Upon further investigation on my part (doctors were of no help), that's when I learned more about POTS and the rest is history. Just be careful if the doctors try to insist it is your thyroid because in my case it is most definitely not. Just a few months ago at CC they were telling me that it just had to be my thyroid causing all of this and thankfully I brought along some thyroid labs which proved them all wrong.

In people with low aldosterone (from Addison's disease with high renin) their potassium levels are normally high. Aldosterone is supposed to retain sodium and excrete potassium, so if it's low then your sodium is too low and potassium too high. I'm simplifying it but that's the general idea. That's why websites are saying to avoid high potassium foods in Addison's patients. Now for whatever reason those of us with low aldosterone, POTS with "adrenal fatigue" or whatever it is you want to call it, I don't tend to see high potassium levels. This paradoxical effect should make us wonder why that is happening! I personally haven't figured it out and don't offer any hypothesis either. It is true that salt lowers aldosterone, but it lowers it when the body senses it has enough sodium. The lowering of aldosterone is a good thing in this case because if your body continued to make the same amount of aldosterone while your intake of sodium was high, you'd have too much sodium! If you have a real deficiency in aldosterone, then whether you take salt or not it's going to be low causing you to excrete too much sodium. I'm certainly not one that advocates taking lots of salt, but I think it's good to apply it to food to your taste. It's best to check aldosterone while salt fasting to see the true levels in the body.

sue, I just wanted to make sure because you said a stim test, so I was a little confused why a doctor would be testing for both adrenal insufficiency and cushings. I didn't want people getting 24 urine tests done looking for AI. Those of you concerned with the accuracy of saliva cortisol tests should read the studies done on it. It is accurate for testing nighttime cortisol results in suspected patients with Cushings. Saliva cortisol is different from blood cortisol because it measures unbound (free) cortisol which is the only type your body can use. Saliva cortisol is a better measurement than blood because many things can elevate CBG (cortisol binding globulin) which in turns makes your blood cortisol levels look better or higher than they actually are. I believe doctors disagree on the reference ranges and not that it measures cortisol accurately. http://jcem.endojournals.org/cgi/content/full/87/10/4515 "Salivary cortisol measurement offers several advantages: It reflects the unbound fraction of circulating cortisol, and thus it is not affected by alterations in cortisol-binding globulin (as, for example, during treatment with oral contraceptives) (24). Salivary cortisol concentration is not influenced by saliva flow rate (24), making it a reliable end point. The advantages of collection at home at bedtime are obvious: The cost of an office or hospital visit is eliminated, and potential increases in cortisol levels because of anxiety or an unfamiliar environment is mitigated. However, an unsupervised OP environment may allow for other stressors. Thus, we emphasize that the patients abstain from food and physical activity for 3 h before they collect the saliva because these activities or other severe emotional or physical disturbance may elevate cortisol levels (24) and give false results." I know I keep bringing up CBG but it is extremely important to understand that blood cortisol readings without measuring CBG are useless unless they come back very low. This study sums up what I'm trying to say very clearly. http://www.eje-online.org/cgi/content/abstract/146/2/231 Good luck to all of you. It's very important to make sure your doctors are testing properly. How can you know whether something will help or harm you if the testing you've had done is useless and/or incomplete? Get the full picture before making a decision whether you have high or low cortisol and then go from there. Same goes with every other hormone in the endocrine system as well.

24 hour urine tests are only in place to detect Cushing's disease (high cortisol) and not low cortisol. The lab range extends too low to be of any value. This is the description from Labcorp's own website. I recommend looking up other tests on here. I have found it extremely informative and has actually been useful when getting weird labs drawn with special handling procedures. https://www.labcorp.com/wps/portal/provider/testmenu "Use: The diagnosis of Cushing syndrome (CS) requires evidence of cortisol hypersecretion. While serum cortisol levels fluctuate unpredictably and are strongly dependent on concurrent cortisol-binding globulin (CBG) levels, a 24-hour urine specimen integrates the cortisol production for an entire day and is not affected by CBG. Urinary cortisol reflects the portion of serum-free cortisol filtered by the kidney, and correlates well with cortisol secretion rate. Limitations: Not useful in the evaluation of adrenal insufficiency (AI). Results in AI overlap with normal ranges. Increased in pregnancy and with oral contraceptives. Increased excretion may be found with pseudo-Cushing syndrome, trauma, or infection.2 Tetracyclines may cause false elevation of results." I bolded the important areas. hehe I am lucky enough that my digestion is really good yet I have issues with amino acid metabolism (I have elevated levels). Removing all of those foods in my signature has made a huge improvement in my gut. The NutrEval test I had done a few months back confirmed that I no protein, bacteria or yeast dysbiosis. Lucky me! At least something works right. haha

I think you took my comment the wrong way. I have a major problem with that on forums, so I'm getting used to having to explain myself LOL. I understand that your cortisol levels before were "high". I'm saying that the test you had done may not have been reliable. Please read my explanation in the other post on why this is possible. My first cortisol level was a 26! yet my free cortisol was Addison's level. The test you had done cannot confirm you are in fact high. That's all I'm trying to say. I'm not implying that the symptoms aren't real or that the supplement isn't helping you. Saliva cortisol results are more reliable when it comes to seeing your free cortisol levels and the cortisol rhythm. Another reason why I don't think your cortisol is high (despite the high first reading) is that the adrenal cortex supplement is in fact helping you. If you had true high cortisol taking this product would make you feel even worse and give you even higher cortisol levels. This product while it is a natural source (from bovine) it is supplementing both cortisol and catecholamines. I'm sure you would agree that if a person had high thyroid levels, you wouldn't give them thyroid hormone supplement right? So I don't quite understand why your doctor who believes you have high cortisol would give you cortisol. I hope I'm explaining myself properly. There are other adrenal supplements out there that lower cortisol which contain products like Phosphatidyl serine and zinc. The product you are taking is for someone with low cortisol. I'm thrilled that you are getting help from the adrenal cortex supplement! For some people that's all they need and they feel a lot better on it. I take bandaids sometimes too. On really bad days, I'll take a beta blocker to make me feel better temporarily. Nothing is wrong with that. The problem I have with using cortisol or hydrocortisone as a bandaid is that it does not come without potentially fatal risks. You have "natural" doctors prescribing hydrocortisone with no emergency injection kits, no extra meds for stress dosing and don't even take the time to explain what to look out for if one begin to go into adrenal crisis. A person taking 20+mg of HC with "adrenal fatigue" has the same exact risks as an Addisonian. When you take HC, you begin to shut down your own body's production and have to be very very in tune with how you feel especially during times of stress. If you were unconscious even in a minor car accident without a medical alert bracelet, you could die while on HC. You better pray you have a knowledgeable EMT or ER doctor who has seen an adrenal crisis before. Taking hydrocortisone is not like taking a beta blocker. There is a huge learning curve and potential for serious injury. You have to be very knowledgeable about your condition and how to treat it. A lot of Addison's patients carry around letters from their doctors explaining their condition and what needs to be done. An adrenal crisis can be life threatening if not immediately recognized and it can happen to someone with simple "adrenal fatigue" while on HC. If a doctor can't take the time to explain all of this to their adrenal patients, then they shouldn't be diagnosing or treating them.

So, Dana, if your cortisol was high. Why did they put you on cortisol? To suppress the high cortisol by making your body stop producing it? Not sure how this works. My cortisol was not high though. That's my point. Even if total cortisol is high, you can still have low free cortisol. Total cortisol measures both free and bound cortisol. Bound cortisol cannot be used. Lots of common medications can elevate total cortisol in blood, but endos don't discuss this or even consider it. Metformin and statin drugs are two that I know of off the top of my head. Maggie I'm not sure the product you are on is really doing what you think. It is bovine adrenal glands, which contains both cortisol and catecholamines. How long after taking the pill did you get your blood levels drawn? It's impossible to measure cortisol levels in blood once you start supplementing, so that's why it's really important to make sure you have a full accurate diagnosis. Adrenaline surges does not necessarily mean you have high cortisol. I've debated this before on here, but I don't think the adrenaline surges are coming from the adrenals in POTsy. I think it's the faulty autonomic system inappropriately triggering catecholamine release. There's no way to really prove that unless some of us want to remove our adrenal glands for the sake of science. Only quest diagnostics measures free cortisol in blood and it's not a common test. I probably should have tested CBG (cortisol binding globulin) to see if that was elevated and binding up all of my free cortisol. High CBG Addison's disease has been recognized now. This is a great link that explains what I'm trying to explain. http://www.addisons-network.co.uk/high_cbg_ad.html As a side note, high levels of estrogen can elevate CBG too. Hopefully this helped and didn't make it more confusing..haha