Salt Loading And Extra Fluids?

[Alaska]

If you are salt loading, do you REALLY measure. The reason I say this is because I was trying to get at least 6000mg and thought I was doing this. But, this week I started my mornings off by putting 6000mg of salt in a small plastic container and would use this to measure how much I was getting. I realized after doing this that I had 2000mg left in the containing at the end of the day and know that I didn't get that 2000mg from my other food I ate. So, I thought it was worth bringing this up that it is worth measuring it out to make sure.

On another note, I have noticed the best way to have this salt (like 1/2 teaspoon) is to take a big bite of my natural peanut butter and then with the peanut butter still in my mouth take the spoon of salt and eat it together. It's still salty, but it hides it better at least for me. Better than taking salt with water. Have not done the pills yet. Just thought I would share that.

[ramakentesh]

There is no evidence - not ONE study - other than one case of cardiomyopathy where the elevated sympathetic drive and NE levels in POTS have caused any cardiac disfunction or damage. the only medical study on the topic was in IST where pateints with over 20 years of sustained tachycardia and sympathetic drive to the heart resulted in no increases in the prevalance of cardiac disease or decrease in life span. infact it would be much more likely that sustained reductions in stroke volume (which occur in nearly all) would have a worse long term effect on the cardiac muscle.

Some may speculate that high NE levels might increase cardiac morbidity as they have been demonstrated to in other disease states, but we arent talking about other disease states - we are talking about POTS. But its important to note that this is patients speculation rather than medical research and I would strongly urge anyone to discuss their salt handling and florinef usage with a doctor rather than inform them based on assumptions from patients.

As an example if someone has low aldosterone and renin then why would the avoid salt? These hormones regulate blood volume. In over 75% of POTS patients there is low blood volume and in ALL POTS patients there appears to be reduced cerebral blood flow or abnormal blood flow causing circulatory collapse. In the normal body where these is cerebral hypoperfusion there is a massive boost in the production of renin and aldosterone to increase blood volume and perhaps pressure in a bid to maintain cerebral blood flow. In POTS this doesnt occur hence the reason why we are prescribed florinef or told to increase liquid intake or salt.

Since many hypovolumic patients have postural hypertension it is patently inaccurate to suggest that these patients should avoid salt or florinef - which ofcourse you cannot assess based on your own subjective symptoms.

Secondly, if your suggesting that you should avoid salt to avoid 'hypertensive damage' yet take florinef then since florinef actually makes you retain more salt than you would normally, isnt that a contradiction? And presumably like 3/4 of POTs patients if you feel better on florinef how do you explain the improvement in symptoms in the very scenario you are scared of - that is an increase in salt loading and volume status?

[issie]

Well, I can give you some names of doctors here at Mayo, AZ that you could ask those questions of. People fly here from all over the world - and they are supposed to be some of the best available, screened out doctors. If they are saying to lower salt to me because I'm a HyperPOTS patient with high bp - then I'm probably going to TRY to listen - at least a little bit to them. They have said to increase water - but, not salt . Therefore, hoping to increase volume and hydration. I don't think anyone suggested to avoid salt to avoid "hypertensive damage" (but hypertension itself can cause damage), I'm not thinking that MOST people who use salt (with POTS) can even become hypertensive. But, there is no telling what high use of salt can long term do to the body. Science has proven that using a lot of salt will lower aldosterone production - but, if aldosterone is already too low - you won't hold on to your salt - because aldosterone regulates your salt balance.

The girl on this forum that I'm talking to - can tell you how bad it is to go without treating high blood pressure and high noriepi levels - maybe they should do a study on her and put it in the text books and then there will be a study. It's insensitive to her and really kind of mean to say that what has happened to her is not factual - she has to hope that she wakes up the next day (literally) - knowing that having not treated this for over 20 years - has caused ir-repairable damage to her. I don't intend to be number two - and I can't believe that she is the only one that this is happening to. I'm really sad for her. She is a young person and doesn't have a single grey hair on her head - she's younger then me. She's afraid of people criticizing her and down playing this - like what is being done here. I wish she had the strength to speak up - she doesn't - she is too sick. So, I'll step up for her and try to get her story out. It just might save someone else

The study of the rats and salt speaks for itself. Look at the study. It's reference is listed. Florinef does decrease potassium and it's important to have a balance between salt and potassium for proper fluid uptake and electrolyte balance. I found a few more articles that may be interesting to you - this one is about endothelial cells stiffening with high salt and aldosterone levels http://stke.sciencem...as;104/41/16281 also here is one of the articles on the rat and hypertension and salt with increased aldosterone (I don't know why this link didn't work - the Title of the article is "How Little Aldosterone is Able to Raise Blood Pressure by Eberhard Ritz" you can google it - really good article.) As, I said earlier - most people who do salt load with POTS are not going to get themselves to a high blood pressure point but - it still merits thinking about what long term salt use could potentially do to the body.

As to whether or not to increase salt or not - a lot would depend on aldosterone/renin levels. (Just a side note - if you drink salt water on a daily basis - with no other water - it will kill you. Some terminally ill people do this. I knew some who have ended their lives this way.) If you do, for a fact have low aldosterone levels and you could boost that with florinef (or transdermal aldosterone - that doesn't have to be processed by the liver) and it is working properly in your body - it would seem that whatever salt you take in, normal amounts should be enough to provide the body what it needs. (My own reasoning - nothing I've actually read. The body probably isn't deficient in salt - the point of the salt is to try to increase fluid volume. Although, there are some illnesses that have salt wasting as an issue.) Most heart doctors will tell you to lower salt - most vascular doctors will tell you to lower salt - most kidney doctors will tell you to lower salt. We all need a little salt - all animals do. But, how much is enough? I've done some studies on salt too. The refined salt that most are using are void of minerals and really could cause more harm than good. If you use salt -a better alternative would be sea salt or himalayan salt with all the additional minerals to have your cells uptake it properly. Most foods today (especially here in the USA) are not made with whole salt with minerals - but refined and added iodine. We would be healthier if we used things in their more whole/unrefined state - with the least amount of processing.

Okay, I think I addressed everything I needed to here. It's up to each individual person to decide what is best for their bodies. We have science, we have doctors - but ultimately it is us that decides what we put into our bodies. Some things may be good - some not so good. We have to decide what risk we are willing to take and be aware of the consequences of our decisions. Thinking about these things and talking about them - is not wrong and is valid. It takes one idea and then research to make todays idea a scientific fact. Thank goodness there are brave enough people to have these ideas and then talk about them. Medicine wouldn't be where it is today - if people weren't looking for answers and having other ideas. We'd still be in infancy with medicine - had it not been for ponderings and outside thoughts of possiblities.

Issie

[E246]

Issie - well said. Everyone is different. I think we may be the only two people on this site who do not want to salt load.

Anna did write something recently about having high bp and that she kept her salt down until she had to cook salty food for her children and would eat it as well and in fact her bp came down. So one does have to keep an open mind and try different things.

I take a small amount of florinef as more than 1/3 of a tablet takes my blood pressure too high, so i have been told not to increase salt and I don't want to anyway.

Two docs have said not to increase salt and one of these mentioned the study and that it showed it was unnecessary but I didn't get the detail. i will ask next time.

I also don't get dizzy or light headed - it is more chest pain so I try and look after my heart because as yet no one has explained it to me and i have no doubt the repeated surges and high bp are not good for the heart.

I am really sorry about your friend and it is really important we make informed descisions. So thank you for telling us about it.

[issie]

Thanks Emma, there are more on the site that don't salt load either, we're not the only two. I do however, agree that we need to keep an open mind - because things can change over night and what is known today might be different tomorrow - that's not only with science and medicine but also with our bodies and how it reacts to things.

Yes, I do feel sorry for the girl I was speaking of - it is a sad place that she is in. I hope they are wrong and can find something to help her. Her story scared me enough to get myself on some meds. My high bp's and surges had gotten so bad and would not settle out. The new med has some side effects - but, I'm thinking that not having the hourly surges and high blood pressure is better then the side effects. Except worried about so much edema. Doctor called me 3 times today and he decided I need to stay on the med and start back using compression hose. I may later have to do something else RX wise if my body won't balance out the edema. I made sure they remembered about my EDS veins - and took that into consideration with their recommendation. The nurse is like - "Oh Yeah, you got lots of stuff going against you - we are well aware of it - like your one of the hard to treat ones because of all your problems." Janie is such a sweetheart and she really wants you to find something to help - Dr. G is fortunate to have her as his nurse.

Issie

[ramakentesh]

Animal models where hypovolumia isnt a factor are irrelevant. Models where POTS isnt present are irrelevant.

The mechanism by which the body increases blood volume are primarily mediated by sodium, fluid increases alone will not have lasting benefit. Drinking fluid can increase blood pressure as well in the short term.

Hypovolumia occurs in most POTS patients. Salt loading without extra fluid is also a waste of time and infact both may be a waste of time in many POTS patients as most may have biochemical reasons for low blood volume that cannot be over-ridden through oral injestion.

[ramakentesh]

Well, I can give you some names of doctors here at Mayo, AZ that you could ask those questions of. People fly here from all over the world - and they are supposed to be some of the best available, screened out doctors. If they are saying to lower salt to me because I'm a HyperPOTS patient with high bp - then I'm probably going to TRY to listen - at least a little bit to them. They have said to increase water - but, not salt . Therefore, hoping to increase volume and hydration. I don't think anyone suggested to avoid salt to avoid "hypertensive damage" (but hypertension itself can cause damage), I'm not thinking that MOST people who use salt (with POTS) can even become hypertensive. But, there is no telling what high use of salt can long term do to the body. Science has proven that using a lot of salt will lower aldosterone production - but, if aldosterone is already too low - you won't hold on to your salt - because aldosterone regulates your salt balance.

The same doctors who were not even aware that angiotensin II was implicted in POTS despite Mayo docs from their research arm commenting that it was 'an interesting development' and who recently told a POTs patient that autoimmune POTS is VERY rare despite docs from THEIR OWN research arm publishing two studies suggesting that they have evidence for an autoimmune etiology in 25% of cases. LOL...

Science as you say hasnt shown in anyway how aldosterone behaves in the face of salt loading in POTS, but the working hypothesis is that it doesnt respond properly in many to either salt handling or reduced blood volume - hence the reason most POTS are hypovolumic. its fairly obvious though that the normal aldosterone responses arent working effectively or we wouldnt have low blood volume - or so I assumed LOL. Still aldosterone probably isnt relevant to all cases in the first place.

And Im always fascinated when docs give factual advice about 'HyperPOTS' because there are no etiological theories that are accepted that cause it and in some there is neuropathy, meaning sympathetic drive may not be the primary problem.

Edited May 4, 2012 by MomtoGiuliana