Possible Warning For Us "seniors"....

[juliegee]

Hi All-

Before I start I must say that I feel almost guilty posting my good news. We have so many new faces popping in- in truly dire straits-forgive my happiness . I wanted to share in order to warn members who are getting up in years, 40+ about the possible long term implications of a high salt diet.

I recently went through a battery of tests after suffering from several possible arterial embolisms in my fingers and toes. My echocardiogram showed diastolic dysfunction, which is the first stage of heart failure. (There are 4 stages.) I was shocked by the news as I am well enough to exercise. I was running 15-20 miles a week at the time. I am 48, thin, don't smoke, don't have diabetes or any other risk factors. Very scary.

On my own, (neither of the 2 cardiologists I consulted knew what to advise ) I decided to cut out all added salt to my diet.This is territory outside of what most cardiologists will advise about- one condition indicating high salt; another prohibiting salt. High salt is implicated as a cause of hypertension, which in turn can cause diastolic dysfunction. DD occurs when there is impaired relaxation of the heart because the ventricles are too stiff to relax. This causes a build-up of pressure & and an impaired distribution of blood to the rest of the body. I also decided to add a magnesium supplement as I saw that some cardiologists were using it to REVERSE diastolic dysfunction. I began yoga, focusing on relaxation and deep breathing AND I kept up my running- listening to body- for speed.

I had further testing today and I got good news The tech wasn't supposed to share, but she did let a few things slip: no pulmonary arterial hypertension, no PFO (hole in my heart), no diastolic dysfunction!!!

I suspect that I was beginning to develop diastolic dysfunction & the steps I'm taking have helped. I have to keep them up as I am unable to tolerate any beta blockers or calcium channel blockers to treat the DD. This is a long term life style change for me. My autonomic symptoms were MUCH worse when I first lowered my salt intake. However, over time, my body seems to have gotten used to the change. As long as I drink non-stop; I'm tolerating it OK. I crave salt. I miss salt- especially on eggs & tomatoes & popcorn & corn, etc. I mean, really what's the point??? Every time I eat, I have to make a conscious choice to protect my heart.

So for any other "seniors" out there- be careful. My BP was rarely high at home, just starting to creep up when I was nervous at the doctor's office... No overt signs of high BP- yet I suspect that the years of salt loading have taken their toll. According to statistics I have read, 15% of patients will have diastolic dysfunction by age 60. A high BMI, high body fat, cigarette smoking, diabetes, inactive lifestyle will speed this process up. There is also evidence that some connective tissue disorders can cause diastolic dysfunction. I think long term salt loading may have dire consequences for some of us. Be careful as you get older. Take many BP's through out the day. Use opportunities when you are feeling stressed as a GOOD time to check BP- gives you a better indication of what truly is happening.

Thanks to everyone for all of your support, PM's, phone calls & prayers during this scary time. I LOVE my autonomically dysfunctional family.

Julie

[Noreen]

Julie-

How funny you posted when I was thinking about you when I read this New York Times article "When Exercise is Too Much of a Good Thing."

"Spending more years exercising strenuously or completing more marathon or ultramarathon races was, in this study, associated with a greater likelihood of heart damage."

I don't know if we will be able to sort it all out but it adds to the debate as we try to keep moderation in mind. I am wondering if your reduced exercise could be as much a factor as reduction of salt.

[songcanary]

Julie,

I am so happy for you! May I ask exactly how much sodium were you taking before you quit? This has been a concern of mine, about the salt loading. But I quit 5 added grams for one week and the lightheadness came back. When I resumed salt I felt much better. I hate adding salt but it seems to help me. That and compression hose. I am so happy for your improvement; you are such a wealth of wisdom, I learn a lot from your comments.

[firewatcher]

Julie, that IS good news! I too am interested in how much sodium you were consuming. My doc has just told me to double my sodium intake.

[roxie]

Great news Julie!

But what about us that are younger? Can it hurt us too?

[juliegee]

I never quantified my salt intake as I LOVE salt. I salted everything and used it liberally in my cooking. At his worst, my son was directed to take 6 Thermotabs a day. I know salt makes us feel better almost immediately- no doubt it mechanically boosts blood volume. I just worry about the long term effects- we CAN'T be immune to them. Our BP will naturally rise as we age...maybe that's when we need to start pulling back.

[issie]

Good news Julie. I hope everything continues in an upward direction.

As you know, I've always questioned the use of salt and florinef. I really don't think it's the right thing for us POTS people. I must admit that salt does at times make me feel better. But I don't salt load. I don't use florinef.

I've done allot of research on salt and the body and how it reacts to salt. All the doctors tell us to lower our salt intake for the sake of our heart - BUT, the POTS doctors tell us just the opposite. I think that if you use salt, it should be the natural, unprocessed salt - either Sea Salt or Himalayan Salt. When it's processed, all the minerals are stripped from it and it changes the shape of the molecules and it becomes a foreign refined substance - that who knows what will do to us.

For you young ones - question everything. It's your body and you need to be aware that what you do today CAN and WILL affect your tomorrow.

[anna]

Really good to see that you have got away from the DD diagnosis. I have wandered about the salt issues as well my children are on a high salt diet, which is a concern!!

[firewatcher]

Just to muddy the waters up on this one, here are two conflicting articles on salt and insulin resistance:

Salt, aldosterone and Insulin Resistance

Salt, aldosterone, and insulin resistance: impact on the cardiovascular system (FULL TEXT in link above)

Guido Lastra, Sonal Dhuper, Megan S. Johnson & James R. Sowers

Nature Reviews Cardiology 7, 577-584 (October 2010) | doi:10.1038/nrcardio.2010.123About the authors

Abstract

Hypertension and type 2 diabetes mellitus (T2DM) are powerful risk factors for cardiovascular disease (CVD) and chronic kidney disease (CKD), both of which are leading causes of morbidity and mortality worldwide. Research into the pathophysiology of CVD and CKD risk factors has identified salt sensitivity and insulin resistance as key elements underlying the relationship between hypertension and T2DM. Excess dietary salt and caloric intake, as commonly found in westernized diets, is linked not only to increased blood pressure, but also to defective insulin sensitivity and impaired glucose homeostasis. In this setting, activation of the sympathetic nervous system and the renin–angiotensin–aldosterone system (RAAS), as well as increased signaling through the mineralocorticoid receptor (MR), result in increased production of reactive oxygen species and oxidative stress, which in turn contribute to insulin resistance and impaired vascular function. In addition, insulin resistance is not limited to classic insulin-sensitive tissues such as skeletal muscle, but it also affects the cardiovascular system, where it participates in the development of CVD and CKD. Current clinical knowledge points towards an impact of salt restriction, RAAS blockade, and MR antagonism on cardiovascular and renal protection, but also on improved insulin sensitivity and glucose homeostasis.

Low-salt diet increases insulin resistance in healthy subjects.

Garg R, Williams GH, Hurwitz S, Brown NJ, Hopkins PN, Adler GK.

Metabolism. 2010 Oct 29. [Epub ahead of print]

Division of Endocrinology, Diabetes, and Hypertension, Brigham and Women's Hospital and Harvard Medical School, Boston, MA 02115, USA.

Abstract

Low-salt (LS) diet activates the renin-angiotensin-aldosterone and sympathetic nervous systems, both of which can increase insulin resistance (IR). We investigated the hypothesis that LS diet is associated with an increase in IR in healthy subjects. Healthy individuals were studied after 7 days of LS diet (urine sodium <20 mmol/d) and 7 days of high-salt (HS) diet (urine sodium >150 mmol/d) in a random order. Insulin resistance was measured after each diet and compared statistically, unadjusted and adjusted for important covariates. One hundred fifty-two healthy men and women, aged 39.1 ± 12.5 years (range, 18-65) and with body mass index of 25.3 ± 4.0 kg/m(2), were included in this study. Mean (SD) homeostasis model assessment index was significantly higher on LS compared with HS diet (2.8 ± 1.6 vs 2.4 ± 1.7, P < .01). Serum aldosterone (21.0 ± 14.3 vs 3.4 ± 1.5 ng/dL, P < .001), 24-hour urine aldosterone (63.0 ± 34.0 vs 9.5 ± 6.5 μg/d, P < .001), and 24-hour urine norepinephrine excretion (78.0 ± 36.7 vs 67.9 ± 39.8 μg/d, P < .05) were higher on LS diet compared with HS diet. Low-salt diet was significantly associated with higher homeostasis model assessment index independent of age, sex, blood pressure, body mass index, serum sodium and potassium, serum angiotensin II, plasma renin activity, serum and urine aldosterone, and urine epinephrine and norepinephrine. Low-salt diet is associated with an increase in IR. The impact of our findings on the pathogenesis of diabetes and cardiovascular disease needs further investigation.

Copyright © 2010 Elsevier Inc. All rights reserved.

PMID: 21036373

I would guess that our sodium intake and reactions are based on our genetic predisposition towards sodium handling. Some of us should salt load and others of us shouldn't. Or perhaps we should salt load to a point and then reduce our salt as time goes by. I'm attempting to find that balance point with salt myself.

[Noreen]

I've done allot of research on salt and the body and how it reacts to salt. All the doctors tell us to lower our salt intake for the sake of our heart - BUT, the POTS doctors tell us just the opposite. I think that if you use salt, it should be the natural, unprocessed salt - either Sea Salt or Himalayan Salt. When it's processed, all the minerals are stripped from it and it changes the shape of the molecules and it becomes a foreign refined substance - that who knows what will do to us.

Issie-

I don't use salt in cooking. When we first started discussing himalayan salt almost a year ago, I switched to it exclusively. I have had an occulsion on my left carotid artery for several years and have had at least 3 ultrasounds. At my cardio appt last week, he detected no problems with the artery. Do you think switching salts made that much of a difference (and so quickly)?

noreen

[MomtoGiuliana]

Interesting discussion. I only salt load when I have a flare up. But last time I had a flare up and salt-loaded I ended up feeling really terrible and went to the ER to get IV Saline. My POTS specialist later looked at my blood work taken that day and said I had over-done the salt and water and what then happens is the body starts to excrete too much potassium. My potassium was low (and at the ER they had administered potassium along with IV fluids. I had not heard that before. I do tend to have low-ish potassium levels especially during a flare up. Anyway, since that experience I am much more moderate in adding salt/salt loading.

Too much salt is also bad for our long-term bone health, I believe?

[sue1234]

Issie, I'm glad you chimed in! I know that the issue of too much salt was your "baby" and you were the one to post a few times recently how maybe we shouldn't salt load. Thanks for the research and thinking that you had done. Seeing Julie's DD go away and Reen's carotid artery blockage disappear just may be telling on your theory.

[Sarah4444]

Thanks for the info, Julie, and I am so glad to hear you are doing better. It does sort of feel like salt loading should be at most a short term fix while they look for safer and more sustainable ways to help symptoms over the long term. It's kind of depressing being a senior citizen in the POTS world at 41, but I am glad that others like you are figuring some of this out for us.

I wonder if it would be worth letting Dr. Grubb and those at Vanderbilt know your experience - since POTS is such a new diagnosis they probably don't know what to expect for us as we age, and maybe telling them what we experience can help them sort this out and start looking into the issue?

[skiberthoud]

Yay for your heart, Julie! I've been waiting to hear the results! I have never jumped on the "salt load" theory. I just don't think, that for me, the long term risks out weigh the short term benefits, but that's just my opinion (I certainly do not judge others for their choices). I also do use himalayan salt when I cook. Just my two cents...

oh, and happy to hear about your positive results, Reen!

[issie]

Issie, I'm glad you chimed in! I know that the issue of too much salt was your "baby" and you were the one to post a few times recently how maybe we shouldn't salt load. Thanks for the research and thinking that you had done. Seeing Julie's DD go away and Reen's carotid artery blockage disappear just may be telling on your theory.

Hey, I'm glad that my "Out of the Box" thinking is of benefit to at least two people now. I put allot of time, energy and research into my theories - it just seems counter productive to what we are trying to fix. It messes up the aldesterone levels even more and that is the fluid balance mechanism our body has to help balance blood pressures and fluids. It's not the only mechanism used but is a key player. It also imbalances our potassium levels and that's super important in the function of our heart and circulatory system. I'm glad to hear that Julie and Reen are doing better. I've got allot of research compiled in regard to salt and how refined salt has been molecularly changed and the benefits of using natural, unprocessed salts. I never wrote that paper, because of them not wanting to publish my other article questioning the way doctors are treating us. But, I did finally got the info out there on this forum - and YAYYYYYYY it's helping others.

[juliegee]

I've researched and bought the Hiamalayan salt. It's probably better as it's unprocessed; but my go-to-guy, Harvard educated, natural health & wellness guru, Dr. Andrew Weil cautions against using any more than 1,500mg a day- that's one tsp. So, if I'm going to break down and use salt- it is Himalayan and I literally count the grains

Natural and unprocessed doesn't mean you can go crazy with it Sigh...

[Noreen]

I've researched and bought the Hiamalayan salt. It's probably better as it's unprocessed; but my go-to-guy, Harvard educated, natural health & wellness guru, Dr. Andrew Weil cautions against using any more than 1,500mg a day- that's one tsp. So, if I'm going to break down and use salt- it is Himalayan and I literally count the grains

Natural and unprocessed doesn't mean you can go crazy with it Sigh...

Glad you are having good results with your treatment plan.

I don't salt load but liberally use it on food. It is a tough balance in that I don't want any more black eyes from falling or passing out.

BTW, I somehow read your post wrong yesterday and thought you were doing that much running in 1 day - sorry for the brain misfunction.

[issie]

I've researched and bought the Hiamalayan salt. It's probably better as it's unprocessed; but my go-to-guy, Harvard educated, natural health & wellness guru, Dr. Andrew Weil cautions against using any more than 1,500mg a day- that's one tsp. So, if I'm going to break down and use salt- it is Himalayan and I literally count the grains

Natural and unprocessed doesn't mean you can go crazy with it Sigh...

That's right Julie, we do have to limit salt. But, we need a little salt and if we use it it should be the unprocessed kind. We should not totally cut salt out - but, there is way too much in most store bought processed foods. And the wrong type of salt is in these. If you eat out at all - you are getting tons of salt and the refined kind, at that. We just need to go back to the basics and eat simple and unprocessed, unrefined and as natural as possible. I really like the Himalayan salt too - it is saltier tasting than even sea salt and it takes less to get the desired taste.

[Sarah4444]

Issie, what paper are you referring to, about the way we are treated by doctors? Who wouldn't publish it?

[issie]

Issie, what paper are you referring to, about the way we are treated by doctors? Who wouldn't publish it?

We've been having discussions about Salt, Aldosterone, Renin etc. for about 8 months now - on and off. I've questioned the way doctors prescribe Florinef and salt loading. A while back the DINET site asked for volunteers to write for the newsletter. I wrote a very lengthy article about aldosterone/renin and my question as to whether salt loading was correct for POTS. (It was not published because of how controversial it is, in questioning doctors treatment. They were afraid that it would cause doctors to not support the site, if they promoted this line of thinking.) I later, was able to put the written article on the forum - It's Aldosterone, Renin - The Article. But, if you go back and do a search you will probably be able to pull up the conversations that we've been having for awhile about these things and some of my research on salt and suggestion that if salt is used - to use the unprocessed, unrefined salt - either sea salt or himalayan salt. But, if you research how the body processes salt and the mechanisms involved - unless you have a known adrenal dysfunction in regard to salt - I question how smart it is to disrupt that function by adding Florinef and salt loading. The idea behind it is to up the fluid levels in the body to increase blood pressure to help with the orthostatic issues. That is what aldosterone is supposed to do in our bodies. Florinef is a synthetic form of aldosterone. But, salt lowers our natural aldosterone levels. It's like we take one thing and counteract it by taking another thing. It's very complex. I predicted that people were going to have congestive heart failure and kidney failure if these treatments are used on a long term basis. Julie, found out that she was in first stage heart failure and attributed it to the heavy salt loading she's done all these years. I'm so glad that I put my theories out there and that it's made a difference. Everyone has decide for themselves what they will or will not do. Just accepting what a doctor tells you may NOT be the right thing to do. So little is known about POTS and how to treat it. I think it's good to question everything and then make a decision based on knowledge when we decide what we will do - rather than blindly letting someone else make that decision for us. The way POTS is being treated - right now - is not working - we need to question things and find other solutions.

[sue1234]

The way POTS is being treated - right now - is not working - we need to question things and find other solutions.

This is so true. I hope research isn't stopping just because now they have found fancy labels to give us. I want causation and fixation!!

[issie]

The way POTS is being treated - right now - is not working - we need to question things and find other solutions.

This is so true. I hope research isn't stopping just because now they have found fancy labels to give us. I want causation and fixation!!

AMEN - sister!!!! I agree whole heartedly!

[juliegee]

I just wanted to add that I appreciate you heightening my awareness of the salt issue, Issie. If you hadn't, I truly may not have connected the DD with my salt intake. YOU predicted heart failure might be one outcome of salt loading and I was DXed a few weeks later...

This is a new enough DX that we need to talk about what happens as we age with the current treatment plans. Thank you for your perseverance. It's helped us all.

Hugs-

Julie

[issie]

I just wanted to add that I appreciate you heightening my awareness of the salt issue, Issie. If you hadn't, I truly may not have connected the DD with my salt intake. YOU predicted heart failure might be one outcome of salt loading and I was DXed a few weeks later...

This is a new enough DX that we need to talk about what happens as we age with the current treatment plans. Thank you for your perseverance. It's helped us all.

Hugs-

Julie

Thank you Julie for your appreciation. I'm glad I did the research and that it was of benefit to you. Hope it helps others too.

[cordellia]

elated! thrilled and inspired by by your good news. ~c