POTS: How Salt Affects Your Blood Pressure

There is nothing to be concerned about.
Have you been told this by your medical provider?

Yet you have trouble thinking, you’re tired all the time and frequently feel cold. You probably “gray out” first thing in the morning when you get out of bed or stand up too quickly. When the nurse takes your blood pressure (BP) at your appointment and it is 100/60 or 80/50 she says, “There is nothing to be concerned about.

Um, what’s wrong with this picture!?

Symptoms like this can indicate a problem and craving salt is a clue. The craving is due to an inability to hold on to sodium. FYI, the backbone of salt is sodium chloride. If you’ve ever been in an emergency room, there’s a monitor with an alarm that goes off as soon as your diastolic BP dips below 50 or your pulse drops below the normal threshold. When this happens, it means your body is not getting adequate blood flow through the vessels and the pressure drops.  Many of you have chronically low pressure (90/60 or lower) and walk around daily with symptoms that get ignored.

Let’s face it, unless you actually faint, or have significant lightheadedness or dizziness, you will be dismissed, possibly for years.  I’d like you to learn about the condition of low blood pressure, sometimes termed “orthostatic hypotension.” It’s the opposite of “hypertension” or high blood pressure which is what most people fear because it contributes to heart attack and stroke.

Low blood pressure or “orthostatic hypotension” is equally bad and it’s a symptom of various problems including anemia, electrolyte imbalances, heart disease, adrenal insufficiency and Addison’s disease, chronic Lyme disease, neurological dysfunction, dysautonomia and autoimmune conditions.  is a side effect of drugs used to lower blood pressure such as diuretics, ACE inhibitors and many others.

The condition of POTS (Postural Orthostatic Tachycardia Syndrome) is another huge overlooked cause for this and one I urge you to evaluate yourself for. A prescription for the drug Florinef (fludrocortisone) could very well become your miracle drug, and a true game changer.  How many times do you hear me say that about a medication?! 

Now, ask yourself the following questions:

  • Does my pulse or blood pressure run low?
  • Does my heart quicken when I stand up?
  • Do I feel weak or tired?
  • Am I dizzy frequently?
  • Do I crave crave salt?
  • Do I get up reeeeaally slowly so I don’t pass out?

Test yourself. Any physician can do this. Specialists will often employ a tilt table for an accurate diagnosis.

It’s important to detect POTS, trust me, there’s a definite correlation with brain atrophy, congestive heart failure, fractures and ability to tolerate anesthesia. Addressing POTS if you have is important. You wouldn’t just leave a leak in your vehicle’s gas line would you?

There was a scientific paper published in the journal, Heart (March 2014) where researchers extensively reviewed several studies that included over 56,000 participants. Of that total number, 11,580 patients died. Those people with orthostatic hypotension had a higher risk of death from all causes which just confirms my point:

There is something to be concerned about!
If you crave salt, it’s a clue that your body’s mineral status is out of balance. 

print
2015-04-22T04:17:09+00:00

118 Comments

  1. Sarah April 22, 2015 at 10:24 am - Reply

    Just out of curiosity, do you know what contributes to the body being unable to hold onto sodium? I have low blood pressure (it was 84/50 at my doctor yesterday) and it seems like fluids just go right through me – as in I take a few sips of water and I’m in the bathroom a few minuets later. Blood testing usually indicates my sodium and chloride are low. I don’t particularly like the taste of salt so haven’t used it on my food and I don’t eat any processed foods that contain any added salt, so I guess in m case it could be insufficient intake. Increasing my intake has seemed to help some, but I still feel very dehydrated so I’m curious about what factors contribute to sodium retention and overall hydration status.

    Thanks!!!

    • Suzy Cohen April 22, 2015 at 5:59 pm - Reply

      Hi Sarah
      Have you tried things like Elyte concentrate or ASEA water?

    • David Brach April 24, 2015 at 2:42 pm - Reply

      Have you tried sea salt? It has the minerals your body needs.

    • Dianed April 25, 2015 at 5:31 am - Reply

      Sounds like you may have a little “pregnenolone steal” going on. The body makes a hormone called pregnenolone as a precursor to 3 substances made in the adrenals.

      These include cortisol, sex hormones and aldosterone. Under sufficient stress, the body cannot generate enough pregnenolone to supply the necessary amounts and a depleted body may shunt towards cortisol at the expense of the other pathways.

      This can cause hormonal imbalances and altered aldosterone production. Aldosterone is the hormone responsible for acting on the kidney to help retain sodium (and chloride). If you have insufficient amounts you will lose sodium through the urine, along with the water that follows it. You basically are in a state of “salt wasting” and mineral depletion.

      It is necessary to recover the adrenals, decrease stress and supply the necessary nutrients to support the hormone pathways while replacing lost minerals. Good luck, I hope you feel better!

    • Pat August 22, 2015 at 6:09 pm - Reply

      It sounds like you are mineral/salt deficient. Folks who are mineral and/or salt deficient cannot hold their water and tend to drink lots of it, complicating their condition. I would suggest a good chiropractor or Naturopath. If left uncorrected, this will eventually lead to catastrophe. A good clean mineral supplement, preferably from a whole food/plant source is essential. Plant Derived Colloidal Minerals (PDCM) by Millennium, Multi-Min and Multi-Min Plus by Biotics Research, or products by Standard Process are all good choices.There are several others, but I would pass on the petrol-products that are sold over the counter labeled as minerals supplements.

      It is good that you avoid the refined salts, but it is *essential that you consume enough salt that has not been refined. These salts will have some color to it, and the color reflects the mineral content from the region of origin. Of the salts that are most readily available, Celtic Salt holds the most minerals, followed by Real Salt/Redmonds, and Himalayan Salt. *If you drink too much water in the face of salt/mineral deficiency, you could become water intoxicated and this can become life-threatening.

      ADH (Antidiuretic Hormone) is produced in the Hypothalmus, secreted by the Pituitary gland, and acts prominently on the Kidneys. Aldosterone, is a hormone produced by the Adrenal Glands. It regulates salt and water in your body and has a huge impact on your blood pressure. These, along with your kidneys are the chief players concerning sodium retention and fluid balance. It is imperative that you have your condition evaluated by a knowledgeable and experienced Doctor, Chiropractor, or Naturopath.

      It will be helpful for you to research these related topics. Hyponatremia, SIADH (Syndrome of Inappropriate Antidiuretic Hormone Secretion), Diabetes Insipidus, Severe Hyperglycemia, Adrenal Insufficiency, Adrenal Fatigue. Dr. David Brownstein has an excellent book called “Salt Your Way to Health.”

      http://www.merckmanuals.com/professional/endocrine-and-metabolic-disorders/electrolyte-disorders/hyponatremia

  2. cis April 22, 2015 at 10:33 am - Reply

    Oh Suzy, I like your work generally but I cannot agree with you today. Why?

    1) Yes, orthostatic hypotension is not nice, and can be associated with higher mortality, but it is just a symptom rather than a disease…

    2) Since it can be due to one of many causes, would it not be better to find out WHAT is causing it (in my case, adrenal fatigue) and fix that?

    • Suzy Cohen April 22, 2015 at 5:56 pm - Reply

      Hi Cis
      We do agree, 100%
      You might have missed the paragraph where I mentioned adrenal fatigue. I’ve cut/pasted it here:
      “Low blood pressure or “orthostatic hypotension” is equally bad and it’s a symptom of various problems including anemia, electrolyte imbalances, heart disease, adrenal insufficiency and Addison’s disease, chronic Lyme disease, neurological dysfunction, dysautonomia and autoimmune conditions. is a side effect of drugs used to lower blood pressure such as diuretics, ACE inhibitors and many others.”
      And YES by all means as you said, “fix that” first.

      • Suzy April 25, 2015 at 8:04 pm - Reply

        “Adrenal fatigue” has been discredited. There is no such medical term!

        • Suzy Cohen April 25, 2015 at 8:37 pm - Reply

          Suzy Harbel- I use the term adrenal fatigue all the time, and it’s intended to be used loosely because people ‘get it’ in context of my articles. I prefer using simple terms instead of a lot of medical jargon which often goes above people’s head. I am referring to medical condition of hypoadrenia or adrenal insufficiency and severe cases like Addison’s.

        • Pat August 22, 2015 at 6:26 pm - Reply

          Before Western Medical Doctors recognize a problem with the Adrenal Glands, and can identify it with standard testing, 90% of the glands function is already wiped out. Let’s recognize the problem and do something about it before we reach that point. This site contains a treasure-trove of information regarding Adrenal dysfunction, fatigue, exhaustion, insufficiency and frank failure (Addison’s Disease). He also addresses why the Medical Doctor community does not consider it an official diagnosis. It is the best collection of information I have found regarding Adrenal dysfunction and was written/put together by a very sharp “White-Coat” MD! Dr. Michael Lam.
          Enjoy.

          http://www.drlam.com/articles/adrenal_fatigue.asp

  3. Ronna Curiale April 22, 2015 at 11:02 am - Reply

    Isn’t there a natural cure for POTS instead of medication? My body does not do well on medication. I have a sluggish liver and my dad died of liver cancer. I am not on any medications on a regular basis. I take suppliments regulated by my functional medicine doctor. But I have all of those symptoms that you talked about

    • Tammy April 22, 2015 at 8:40 pm - Reply

      would be really grateful for some non-prescription suggestions. I am with Cis on this one. really would love to stay away from medication

      • Suzy Cohen April 22, 2015 at 11:45 pm - Reply

        I’m not allowed to advise, maybe one of the docs on the forum here will do that for you.

        • Amanda April 23, 2015 at 12:24 am - Reply

          Hi Suzy,
          You are a functional medicine practitioner. Surely you CAN advise on alternatives to pharmaceuticals, since that is the point of functional medicine.

      • Jennifer D April 26, 2015 at 2:50 am - Reply

        http://www.potstreatmentcenter.com

        Helped me a lot!!! Great staff!

  4. Cara April 22, 2015 at 11:17 am - Reply

    What are the steps to fix low blood pressure without pharmaceutical drugs?

  5. Susan Srulowitz April 22, 2015 at 11:32 am - Reply

    I have craved salt for as long as I can remember! I remember getting in trouble when I was 5 yrs. old for taking a rock to knock off a corner of a salt lick at my uncle’s farm, at 8 yrs I enjoyed the rock salt more than the home made ice cream it was for. I used to pour salt in my hand and eat it. Even now as an adult, I keep salt crystals for when the craving gets to be too much. The first thing everyone asks me if my blood pressure is high, and no, I rarely go above 110/70. Thank you for this article! I have not been crazy all this time!!! And I will be mentioning this to my doctor. Susan

  6. Pamela from Virginia April 22, 2015 at 11:43 am - Reply

    Hello Suzy,

    Since Celtic Sea Salt is high in minerals, would it be okay to increase salt intake instead of taking Florinef?

    I love reading your posts. Thank you for caring! Pam

  7. Sandy April 22, 2015 at 11:57 am - Reply

    Hi Suzy, my cardiologist diagnosed me with POTS and didn’t seem all that concerned about it. She said to make sure I’m exercising, drinking salt water and wearing compression tights, which I hate by the way! She said that Florinef has a lot of side effects such a water retention, and I probably wouldn’t like it. I did not realize that there could be such serious ramifications of POTS. My mother has is too, and does have some frontal lobe atrophy…makes me concerned for my brain!!
    I’m wondering if there would be value in visiting the Cleveland Clinic as they have a very extensive POTS lab.
    Thank you for all of the great articles!!!
    Sandy

    • Suzy Cohen April 22, 2015 at 6:06 pm - Reply

      If you already have a valid diagnosis for POTS (and all the symptoms, AND A FAMILY HISTORY) why would you spend more cash to visit the Cleveland Clinic and get another diagnosis for POTS? Doesn’t make sense that your doctor “didn’t seem all that concerned about it” and you have all the symptoms and a family history!!
      Kinda makes me mad Sandy.
      If he/she had the symptoms, they wouldn’t go a day without taking care of themselves!
      I would absolutely try the medicine even if you have to break the tablets in quarters or in halves to see how you react.
      Just crazy to be left alone to fall through the cracks.
      Good luck, keep me posted. I want to hear good news!

      • Jennifer D April 26, 2015 at 3:01 am - Reply

        I was diagnosed with POTS in December. I believe mine came on with adrenal fatigue. I recently read that thyroid symptoms can be similar to POTS. Is that true? And isn’t it true that excess iodine in regular salt can wreck havoc on your thyroid and subsequent systems if you are nutrient deficient in zinc and selenium since it’s required to convert t4 to t3? In my case I was also losing hair, had low vit d, pregnenolone, elevated TPO, Anti thyroglobulin antibodies, elevated reverse t3, homocysteine and crp and low ferritin. All returned nearly to normal when taking a product called travacor which included methylation support and zinc and selenium among other things. Thoughts?

        • Suzy Cohen April 26, 2015 at 4:19 am - Reply

          You’re right must have selenium and zinc on board prior to the iodine. Great to hear that “all returned nearly to normal” with the Travacor. Thanks for posting. Yes, POTS can come in tandem with adrenal fatigue (hypoadrenia).

  8. Christine April 22, 2015 at 12:12 pm - Reply

    Hi Suzy,
    Thanks for all the great information. I definitely have POTS and I think my daughter does as well. Is there a natural alternative to the Florinef?
    Christine

  9. Sharon April 22, 2015 at 1:24 pm - Reply

    Many people get too much sodium in their diet through foods prepared prepared foods and foods they eat in restaurants. Since I was not doing either of those things and was listening to the advice to avoid the salt shaker, I was not getting the minimum amount of sodium I needed. I became very ill.
    My doctor diagnosed my problem as depression and recommended antidepressants.
    I finally realized what was wrong and when I added salt to my diet, I recovered.
    I have heard of other people also becoming very ill from lack of sodium.
    I also have just read a study funded by the NIH researching older people in regards to their mortality and cognitive impairment.
    Surprisingly, the people with moderately high systolic blood pressure between 135 and 150 were less likely to have memory problems that those who had lower or higher readings.

  10. Johann Growsky April 22, 2015 at 1:34 pm - Reply

    I am taking Midodrine HCL 5 mg for low blood pressure. Is it appropriate?

    • Starlaaster August 3, 2015 at 4:22 pm - Reply

      I took midodrine 5mg for years for my pots. I was happy with it and preferred it to florinef because it has less side effects. But after moving back to Texas and having a hard time keeping a job because I kept over heating, I finally went on florinef. I think its working better but it made me gain a few pounds, wich is a problem because my pots is caused by EDS. The extra wait causes a lot of pain in my joints. So really its a personal choice based on your circumstance.

  11. Leigh April 22, 2015 at 2:04 pm - Reply

    It’s great that you address the issue of low blood pressure. However not everyone with low blood pressure has POTS, there are other forms of low blood pressure. Additionally, it is completely untrue that it is “easily” treatable with Florinef. Florinef can cause other issues for many people, and does. Additionally, if you don’t know the cause of POTS, if in fact you are able to get a diagnosis from a qualified cardiologist, which is not as easy as it sounds, as many do not know how to test for POTS, and even those who will perform a TTT often do it incorrectly!

    Please please please — it is important to address this issue, but also important to recognize and acknowledge its complexity and the individuality of the issue for each person.
    Saying it is easy to treat is very misleading and gives false hope.
    thank you nevertheless for bringing attention to it!

    • Jo anne April 22, 2015 at 11:35 pm - Reply

      False hope. I hate when people say that. Hope is hope and is always great.

  12. Sharon April 22, 2015 at 2:19 pm - Reply

    Thanks so much.
    This is one of the few articles I’ve seen addressing low blood pressure which I’ve had for many years. I have been struggling with many health issues and been working diligently to improve. My blood pressure is normally around 90/60 but not often lower. Are there natural ways to improve it without medication?
    thanks so much for all you do.

    • Jacky April 23, 2015 at 2:20 am - Reply

      I had low blood pressure all of my life, 90/60 till about 15 yrs ago. I did not have any of the symptoms, except for loving salt, no chips, but lots of nuts. When I started taking COQ10 my B/P normalized and began running, 112/70 to 125/70 I am 78 yrs old and have never had the symptoms of low B/P as lethargy, and so on. I very happily take the COQ10 and stay even. The low B/P seems to run in the family, my grandmother, and my daughter also. I have lots of energy and am very healthy, I am careful about what I eat, no junk, mostly fresh, and always home made. So much to be thankful for.

  13. diane April 22, 2015 at 2:24 pm - Reply

    So, if you do not test positive for this but you do crave salt, what tests would you recommend to find root cause so it can be addressed and corrected?

    • Suzy Cohen April 22, 2015 at 5:49 pm - Reply

      Adrenals and thyroid are also connected to salt cravings.
      But I’d retest POTS again, to make sure. Most traditional docs don’t take the time (or have the tilt table) to do it correctly.

  14. David April 22, 2015 at 2:34 pm - Reply

    I have some of this dizzy feeling, esp. after standing up from a bath. BUt I don’t think I crave salt. If anything, it’s more likely sugar. What gives? And doctors sure don’t worry about this type BP. Mine has been 99 over 69, but lately, it’s rather better, 115 over 80

    • Suzy Cohen April 22, 2015 at 5:49 pm - Reply

      Yep, I’d check your adrenals and thyroid with tests.

  15. Rodrigo Gamboa April 22, 2015 at 2:51 pm - Reply

    Are you speaking about sea salt (whole salt) or processed “franky-salt”?

    • Suzy Cohen April 22, 2015 at 5:48 pm - Reply

      Ha ha, excellent question. Himalayan sea salt or Celtic sea salt.
      No franky salt although it will still raise BP, it is stripped naked of all it’s natural minerals.

      • Katrina Woodrow April 26, 2015 at 7:01 am - Reply

        I don’t think the Himalayas have a sea but the salt is great and a pretty pink too!

        It is funny how information comes your way just when you need it. I had a patient last week who said she had low blood pressure, I just wish I could remember which one it was! I am saving this for when I remember. I am currently looking for a remedy for bad memories!

        • Suzy Cohen April 26, 2015 at 5:27 pm - Reply

          LOL Katrina you are funny. If you really want articles on memory, I have archived them just use my search box on the right. Good to meet you here.

        • Sherri Hewett July 6, 2015 at 7:53 pm - Reply

          I wondered that, too, when I started on the pink Himalayan salt. But surprisingly there actually WAS a sea in the Himalayans millions and millions of years ago. Love the pink salt! Still trying to get my electrolyte levels balanced but the pink salt has def helped slit. That and the licorice extract. Mo think that’s the closest natural thing to Florinef. 🙂

  16. Robin April 22, 2015 at 3:05 pm - Reply

    I’ve just begun having low blood pressure. Can you suggest any natural ways to bring it up? Thank you and I am so appreciative of your care and kindness in helping people!

  17. Helen April 22, 2015 at 3:39 pm - Reply

    Hello Susy. Thank you for posting this article about POTS. I have low blood pressure for years and all I hear from nurses and doctors that is normal and is better be in a lower range than in a higher. I have a question for how long should I take fludrocortisone? It have side effects? Thank you!

    • Suzy Cohen April 22, 2015 at 5:42 pm - Reply

      Hi Helen
      If you try the fludrocortisone and it does help you then it is probably lifelong therapy.
      POTS is not usually the kind of condition that automatically corrects itself (though it can in some cases, it really depends on the root cause). This is a good site that explains side effects: http://www.drugs.com/sfx/florinef-side-effects.html

  18. Barb April 22, 2015 at 3:43 pm - Reply

    Please give us the link to that article in Heart Magazine, if there is one. I’m taking your article and hopefully the one from the magazine into my doctor. My blood pressure, the last time I was in the doctor’s office was 90/50. Got all the other symptoms too. Also please tell us how this low blood pressure affects your ability to tolerate anesthesia. Do you need more or less to have it work? I wonder if POTS is a predecessor to Alzheimers? I remember my grandmother taking the top off of the salt shaker and pouring a pile of salt on her plate to dip each and every bite of food into it. She has Alzheimers. One more question… what does fludrocortisone mug out of the body? Thanks!

    • Suzy Cohen April 22, 2015 at 5:41 pm - Reply

      Here’s the journal link I referred to in my article: http://www.ncbi.nlm.nih.gov/pubmed/23878177
      As far as BP and POTS and it’s impact during surgery, it appears that there is prolonged episodes of hypotension, but no complications. Here’s a link to that research: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3349351/
      My dad loves salt too, he’s kind of like your grandma 😉

      • Barb April 22, 2015 at 6:41 pm - Reply

        Thanks for your reply Suzy, but I was wondering if you needed more or less anesthesia. I personally have to have large amounts of numbing agent when I have dental work (can’t do epinephrine) and I often wake up in the middle of a surgical procedure which is no fun. That has happened three times despite my warning the doctor. Is that related to POTS or is this an Adrenal problem? Also when you go to your doctor to request that he test you for POTS, what kinds of tests should he do if he doesn’t have a tilt table?

        • Suzy Cohen April 22, 2015 at 11:52 pm - Reply

          Waking up during surgery has to be one of the most horrific things to occur (and also some people wake up but can’t talk or move so this goes under the radar of the surgeon). HORRIFIC.
          I’m so sorry to hear that. I don’t think it’s from the POTS though. (They’ll know what tests, it’s too much to outline here, you can google that as well).

        • Melissa July 8, 2015 at 3:01 am - Reply

          Ehler’s Danlos sometimes overlaps with POTS. People who have the genetic condition of Ehler’s Danlos Syndrome frequently have problems with anesthesia not working normally in dental procedures. (also referred to as hyper mobility syndrome)

          Instead of tilt table, a quick but MUCH less comprehensive test is to lay down for ten minutes and test your heart rate (beats per minute). Next, stand up for ten minutes, absolutely no squirming or moving of any type, then test the heart rate (beats per minute). A difference of over 30 – 50 bpm is usually indicative of POTS.

        • Starlaaster August 3, 2015 at 4:34 pm - Reply

          Honestly, GPs are not equipped or well trained to deal with pots. I tried for years to get help, because i was greying out all the time. It wasn’t until it got much worse and I ended up in the ER that I was given the quick lay down stand up test. Then I actually went to a neurologist for diagnosis/ tilt table tests.

  19. Jackie April 22, 2015 at 3:55 pm - Reply

    Hi Suzy,

    I believe I may have this. I have all of the symptoms including recently-developed Type 1 Diabetes. What specialist do you recommend I see?

    Thanks so much for the enlightening information. I follow you via your newsletter and always learn something valuable. I greatly appreciate the work that you are doing.

    Jackie

    • Suzy Cohen April 22, 2015 at 5:34 pm - Reply

      Hi Jackie
      I’d go to functionalmedicine.org and put in your zip code to get names of various local Functional Medicine practitioners. They have good knowledge of holistic methods of treatments.
      Any doctor can catch this, people catch it themselves by taking their own pulse and BP while sitting, then standing up, and so forth.

  20. Lewis April 22, 2015 at 4:20 pm - Reply

    I have wondered if natural salts like Himalayan and other varieties might be good even for folks with blood pressure or heart issues. My thought comes from the idea that natural salts are not processed like table salt and therefore are not “unbalanced”. Kind of like someone taking one particular supplement and not paying attention to the related vitamins or minerals and making themselves sick as a result.
    Thanks for your work!

  21. Sara April 22, 2015 at 4:31 pm - Reply

    That’s very interesting. We live way out in the country. Around here all manner of varmints can be caught using salt as bait. The deer crave it, and pretty much every thing that grows fur craves it. I suppose they are all mineral imbalanced.

  22. Grazia April 22, 2015 at 4:38 pm - Reply

    Thank you for this article, Suzy. You are right, most doctors don’t take low blood pressure seriously. I do have low blood pressure, the diastolic is usually in the mid 50’s, but I don’t have POTS and don’t crave salt, although I’m symptomatic (weak, tired, occasionally lightheaded).

    By the way, do you think it’s possible to have POTS and not know it? I mean, does it have to be evaluated/diagnosed by a specialist to make sure? Or if the evident symptoms are absent, then it’s safe to say I’m free of it?

    P.S. I think it’s wrong to term low blood pressure “orthostatic hypotension,” because hypotension may and does exist without necessarily being orthostatic. I know you’re not the one to have termed it like that, by the way.
    I just thought to mention it here 🙂

    • Suzy Cohen April 22, 2015 at 5:31 pm - Reply

      Yes Grazia, it’s definitely possible, and in fact it happens FREQUENTLY that people don’t know they have it.
      So commonly misdiagnosed or ignored, it’s a shame.

  23. Donald Smallwood,Jr April 22, 2015 at 4:39 pm - Reply

    I crave salt, have brain fog, almost black out with sudden movements and have a pacemaker(2009).

  24. Ian Huggins April 22, 2015 at 4:41 pm - Reply

    As an avid reader of your newsletters, can you just rule this one out for me: While having that symptom pattern, my BP is more likely to read high than low. Does that mean definitely no POTS? Thanks
    p.s. love the depth and detail of your posts, no-one else is so complete!

    • Suzy Cohen April 22, 2015 at 5:30 pm - Reply

      Hi Ian
      Thank you.
      No, it could still be POTS, it’s more of the constant fluctuation and the erratic nature of BP, I’d still get tested or try a short trial of medication (even half dose to see what happens).

  25. deb April 22, 2015 at 5:18 pm - Reply

    Can’t sign up for essential oils workshop??

    • Suzy Cohen April 22, 2015 at 5:29 pm - Reply

      Hi Deb
      Did you try my affiliate link: http://www.EssentialOilsSummit.net
      If that doesn’t work, maybe we took their site down again, I have so many avid fans that go and sign up at once, that we’ve literally crashed sites for 3 different summit websites right after a newsletter send, lol.
      Try it now though it worked for me.

  26. Robin April 22, 2015 at 5:23 pm - Reply

    Thank you for this article! I have recently been dealing with low BP. Could you recommend any natural ways to bring it up? Thank you so much for your care and kindness to help people.

  27. Betty Critser-Newman April 22, 2015 at 5:44 pm - Reply

    Suzy: I was excited to read this article on “POTS”. This is exactly what I was talking with my Dr. about yesterday. The result of that meeting was a Dr. referral to a Cardiologist and staying away from sugar or anything that spikes the blood system.
    I have had POTS for many years.. it runs in my family. The amazing thing is that I was encouraged to use salt more and Electrolyte water for my low blood pressure.
    My current symptoms that triggered this talk with her was fainting while gardening, feeling weak and being aware of dizziness at times.
    I am 83 yrs of age, and feel I am in good health in many ways. No arthritis to hamper my exercising which I keep a 30min. every day routine. I feel my diet is good. and hope I am in the right direction with acquiring “Florinef”!
    Thank you for your inspirations for a confident and healthy body.
    Betty Critser-Newman

  28. Dee April 22, 2015 at 11:11 pm - Reply

    Thank you for this information! My blood pressure is always low, usually 90-95/50-60. I have all the symptoms you mention. I actually have fainted (and lost a few minutes of memory), and I was still told that the low blood pressure was ok.

    I have always preferred salty over sweet, but I don’t currently crave salt. The only time that I actually really wanted salt was when I was drinking 2 1/2 liters of water daily for kidney stones. My sodium levels did drop too low at that time. Any advice for how to talk a doctor into testing? Thanks.

    • Suzy Cohen April 22, 2015 at 11:53 pm - Reply

      Hi Dee
      Just print up my article, or another article from any trusted source and say to him/her that you think you have this and want it to be ruled out (or ruled in). Either way, testing is pretty easy and sometimes they just treat based on the clinical scenario (your symptoms).

      • Dee April 23, 2015 at 3:09 am - Reply

        Thanks so much. You’re articles are so helpful and it’s so great that you take the time to help people.

        Dee

  29. Shirley Segal April 23, 2015 at 12:33 am - Reply

    Read your article word for word on low blood pressure.
    Seems to me , if you have an ailment that is a bit unusual, the doctor will say “That’s all in your head.”

    Thank you for your insight and all the wonderful work you do.
    Most sincerely,
    Shirley r. Segal l.m.h.c. retired

  30. Susan April 23, 2015 at 1:37 am - Reply

    Here a link to the story of a woman who recovered from POTS and numerous other chronic illnesses through neuroplasticity

    http://wheelchairtorollerblades.com/

  31. Mary-Anne April 23, 2015 at 7:45 am - Reply

    Hi Suzy, I have had low blood pressure my whole life including most of the symptoms mentioned. What is the association between POTS and sodium issues. One of the other comments mentioned issues with going to the toilet all the time and being dehydrated a lot. I have this problem too. I also have a Mthfr gene mutation, I am homozygous c677t. Is there any association between these issues?

    • Suzy Cohen April 23, 2015 at 9:49 pm - Reply

      Yes, an MTHFR SNP c677t can absolutely cause cardiovascular problems of all sorts. I can’t find a study that connects the snp to POTS directly so jury is out. Many people (like 40%) have a methylation snp but they don’t all have POTS, which speaks to some kind of dysautonomia. I hope my article will inspire you to get tested.

      • Adriana Lepadatu May 7, 2015 at 8:47 pm - Reply

        Dear Suzy,

        What is the CORRECT test to found out If you have

        POT/DYSAUTONOMIA,

        Thanks,
        Adriana

  32. Louise from Australia April 23, 2015 at 7:58 am - Reply

    Suzy

    You mention that it is a side effect of ACE inhibitors. My doctor had me on high blood medication for over 15 years until last April 2014. When I decided to look up what the causes of high blood pressure were on you tube because I hate taking medication unless necessary.and after I have researched the reason why one gets these problems. That is where the web is so brilliant. I spent countless hours researching lots of sites and learnt lots of things.

    When satisfied, I dumped the meds I was taking. My blood pressure was always 120/65 for years. I learned through research that we should be taking Celtic sea salt for our health and drinking lots of clean water, so at night I would have my pinch of salt with my glass of water each time I visited the loo. Then late last year I started reading Dr Datis Kharrazian’s brain book and in it he stated that the perfect blood pressure should be 120/80. If less, then it meant that the brain was being depleted of much needed oxygen. This is typical he said of low thyroid patients. I have hashimotos hypothyroidism which was finally confirmed in Dec 14 at my insistence.

    At the same time my doc took my blood pressure and it was — yes you guessed it! 120/65. So as Dr Kharrazian had suggested taking lots of celtic sea salt and to try liquorish tea, I am now doing both and hope that next time it will be higher. Also deep breathing as we tend to breath shallow, this I know I do.

    My question to you is: will the effects of the ACE inhibitors wear off over time or am I stuck with this problem– having taken then for so long? I realise that there could be other underlying causes as well. I would just like your thoughts on it please.

    • Suzy Cohen April 23, 2015 at 9:47 pm - Reply

      They can wear off over time Louise, and thank you for the wonderful clues you’ve offered people in your post.

  33. Yas April 23, 2015 at 10:47 am - Reply

    Hi Suzy,
    I literally got my blood results today from the doctor… The reason I visited was due to heart palpitations, low energy and dizziness. I also get frequent headaches and migraines
    Surprisingly my blood results came back all clear yet when the doctor tested my blood pressure it was high. The doctor wanted me to go on high blood pressure tablets however I declined. (Both my parents do have a history of high BP and heart disease.)
    Do you think I have the symptoms of POTS and should I get tested?
    Thanks.

    • Suzy Cohen April 23, 2015 at 9:45 pm - Reply

      The symptoms you have could very well be POTS (which is a syndrome, it’s not diagnosed based upon one or two symptoms), but these symptoms can wax and wane, and they can get better or worse for months at at time. I don’t see anything wrong with testing, there are ways to try to rule this disorder in (or rule it out).
      POTS is sometimes related to hypovolemia, hyperadrenergic states (high epinephrine, perhaps a SNP is causing that), or blood pooling, infections and all sorts of dysautonomia-related disorders. And more.
      Your symptoms could be many things, not necessarily POTS.
      Palpitations could be tied to low RBC magnesium, biotin deficiency or low taurine.
      Migraines, well that’s a topic in and of itself, you should grab a copy of my best-selling “Headache Free” book, click on Shop tab above.
      My point is that what you are feeling could be many things, and so you can now test yourself for all these clues I have given you.

  34. Leanne April 23, 2015 at 7:37 pm - Reply

    My daughter was diagnosed with POTS several years ago. She also did not do well with Florinef. We are also very active in alternative medicines and essential oils. I would like you to realize that much of the information you listed on your newsletter is INCORRECT. It is NOT an easily treatable disorder, hence the fact that there are a number of universities and top doctors doing research on it. Vanderbilt University as well as Mayo Clinic and Cleveland Clinic all have fantastic research on POTS taking place. Would you also like to give actual facts about even ONE patient with POTS dying of a heartattack? I have NEVER heard of ANYONE dying of a heart attack from POTS. Actually, most POTS patients have VERY healthy hearts, which is why this is so difficult to treat, and MOST cardiologists will treat POTS patients, but the heart itself is NOT unhealthy or deffective. Please stop giving people who are suffering from this very difficult disorder FALSE HOPE.

    • Suzy Cohen April 23, 2015 at 9:35 pm - Reply

      Hi Leanne,
      Nothing in my article is factually incorrect.
      On a side note, I can hear your exasperation, and it must be very hard for you, with your daughter and I’m sorry to hear that you have to go through that. It’s not fair.
      I know what it’s like to love someone that has a disorder that is difficult to treat, it’s quite painful to watch so I empathize. Here’s one study, and if you could take the time to do a quick search on pubmed, you’ll find more research regarding cardiovascular risk and OH: http://www.ncbi.nlm.nih.gov/pubmed/24879490

  35. Romana April 24, 2015 at 2:32 am - Reply

    I constantly crave salt, often suck on a big cristal of unrefined sea salt, but my BP is high; could it be because of that? Years ago my GP told me the blood tests said I discharge too much sodium instead of holding on to it, I am more often than not cold but my thyroid was blamed for that. However, I now know the way they measure it is not a proper picture…i would be very grateful for your comments.

    • Suzy Cohen April 24, 2015 at 4:29 am - Reply

      Yes, it could very well be POTS, but because this is a syndrome that includes way more than salt cravings you should be tested properly.

  36. Amy April 24, 2015 at 11:36 am - Reply

    Hi Suzy – thank you for shedding light on POTS which is becoming more recognized, but for years and still today, a lot of doctors don’t know what it is. I was diagnosed years ago but have had symptoms for 35 years. After years of research as to what was happening to my body when conventional medicine failed horribly, I don’t believe POTS is a disease at all. It is a label for what is happening to your body when it is overloaded with toxins (from any and all sources that bombard us in today’s world). It is my belief that toxic overload disrupts most all bodily functions and signals including that of the autonomic nervous system.

    Your posts have been most helpful to me over the year as my toxic overload began at age 16 from a tick bite and RMSF, then toxic mold exposure from my workplace, then learning I have a compound heterozygous MTHFR defect, and then realizing mercury (mostly from amalgam) was attributing to my symptoms which are also POTS symptoms. Since removing the mercury, detoxing my body from all of the above which had built up over the years and going all organic and vegetarian – the POTS has pretty much disappeared.

    • Suzy Cohen April 24, 2015 at 4:51 pm - Reply

      I am so happy for you Amy, and thank you too.

  37. Larry April 26, 2015 at 1:29 am - Reply

    Hello Suzy,

    I enjoy your posting on FB, and emails. Do you have any knowledge about vitamin k2 (mk7)?
    I would like to begin taking vitamin k2 if there isn’t any conflict between them.
    I am already taking BP medications for high BP. Thank you for sharing your knowledge with us.

    • Suzy Cohen April 26, 2015 at 2:03 am - Reply

      K2 may lower blood pressure and as much as I like supplements, I think you need to ask doc whether this is right for you specifically with the unique list of medications and supplements you take.

  38. Becky April 26, 2015 at 2:46 am - Reply

    Hi, Suzy,

    I am so grateful for all I have learned from you!!
    I have high blood pressure and take Benicar the lowest dose
    but when my doctor takes blood panel tests they always come
    back with sodium as low. Don’t know much about Benicar except
    that it is an older drug. Do you think it may be the medication
    or my thyroid, adrenals?

    Thanks, Suzy!

    • Suzy Cohen April 26, 2015 at 2:56 am - Reply

      If you’re taking Benicar HCT, it can definitely cause hyponatremia. I’m not sure about plain Benicar though.

  39. Vera April 26, 2015 at 4:08 am - Reply

    I’ve had crazy low BP my entire adult life, but it worsened with an autoimmune disease. I was drinking and eating salt like crazy and still fatgued and woozy until I started taking Low Dose Naltrexone (LDN). At first the BP seemed to droop even more, but as the autoimmune symptoms lifted, so did the BP. No more extra hydration or salt required!! I recently started taking 5 Mcg of Cytomel for low Reverse T3 (but otherwise normal thyroid labs). Within days my temp rose from 97.4 to 98.2 and my HR from 60 or lower to 70! BP is a reliable 110/70 now!

  40. Kathy April 26, 2015 at 8:03 pm - Reply

    Timely article Suzy, thank you! I have this, it was one of the symptoms used to distinguish and diagnose my rare disease known as Multiple System Atrophy (MSA) from its kinder and better known cousin, Parkinson’s. Medicine so far has nothing but symptom management for us. My neuro told me at my second appointment to return in 14 months. I knew then I was on my own. Fortunately I’ve found some excellent guidance in the writings and webinars found in the functional medicine community, yourself included.

    Recent digging around about many and varied MSA symptoms has led me to suspect thiamine deficiency, in myself at least and perhaps others, at least those with neuropathy. I’ll attach an article I found on it recently. It’s apparently often missed as a diagnosis because of the alcoholic association, but they are realizing now non alcoholics get it too. I mention it because hypotension is also one of those symptoms potentially linked to thiamine deficiency.

    I read that tumour growth and blood loss both can cause thiamine deficiency, and getting glucose in an IV can take it from bad to worse as thiamine is essential for carb absorption. What else leads to thiamine deficiency? Are there pharmaceuticals that could contribute.? Thanks for any input.

    http://www.todaysdietitian.com/newarchives/100610p78.shtml

    • Suzy Cohen April 26, 2015 at 10:11 pm - Reply

      Hi Kathy
      Great post thank you. There are a ton of drugs that smash thiamine, I list all these “drug muggers” in my book, there are hundreds really. Big offenders include antacids, acid blockers, steroids, certain diuretics and antibiotics.

  41. Lisa April 27, 2015 at 12:07 am - Reply

    Hi Suzy,
    I came to your site to read the MTHFR article as many of us with Ehlers Danlos Syndrome have issues with MTHFR. Ehlers Danlos is a genetic connective tissue disorder and unfortunately, the gene for the most common type (hypermobility) hasn’t been identified. Many, many of us also have POTS, the thought is that the laxity in the blood vessels allows blood pooling. Also, many also have vitamin D issues too. This is only the tip of the iceberg. Add the pain from all our loose joints and yep, we’re a mess!
    My internist recently suggested I start a specific dosage of methylcobalamin and methylfolate as I was experiencing a vibration sensation in my foot. After 3 weeks, the sensation is gone. So, I have just submitted my 23andme test to check out MTHFR. Thanks for sharing your articles and insights, they’re very helpful!
    The more I learn, the better equipped I am to deal with a multitude of issues.
    PS—I am lucky to live in G’ville and bleed orange and blue. Go Gators!

    • Suzy Cohen April 27, 2015 at 12:40 am - Reply

      Lisa I’m so happy to hear that the vibration sensation is gone!
      Sometimes it is riboflavin deficiency too. I think you made a great decision for the 23andme testing. It will serve you and get you even better!

      • Lisa April 27, 2015 at 1:14 am - Reply

        Interesting because I was on riboflavin, coQ10 and magnesium as a migraine preventative for a while. Still taking magnesium, guess I should resume the riboflavin and coQ10..Thanks!

      • Lisa May 12, 2015 at 9:03 pm - Reply

        I tested homozygous for MTHFR C677T & MTRR A66G!

  42. angie April 27, 2015 at 10:54 pm - Reply

    Dr. James Wilson has an excellent explanation of the effect of hypoadrenia on salt and postassium regulation and its effect on blood pressure, found both in his book: Adrenal Fatigue: The 21st Century Stress Syndrome and on his website: http://www.adrenalfatigue.org. Excellent read if you struggle with fatigue and low blood pressure!

  43. Maria April 28, 2015 at 4:37 pm - Reply

    Hi Suzy:

    This is my first post.

    Will drinking RO water lead to mineral difficiencies?

    • Suzy Cohen April 28, 2015 at 4:54 pm - Reply

      I think so I’ve seen where RO water diminishes manganese, iron, flouride, lead, and calcium (Binnie et. al., 2002).

  44. […] A 2011 study performed on rats in China provided evidence that glycyrrhizin could protect against some of the more drastic negative outcomes from spinal cord injuries, by suppressing inflammatory chemicals (called cytokines) and blocking the release of a gene that promotes further inflammation (HMGB1). In a separate human study, it was also observed that licorice root reduces body fat in part by suppressing aldosterone, which is the hormone that tells your body to hold on to salt and water. Some people say that they use licorice  used as a substitute, instead of Florinef for POTS (read my article here on POTS: How Salt Affects Your Blood Pressure.) […]

  45. Jen May 30, 2015 at 12:35 pm - Reply

    Is this medication safe for those with Lyme and Coninfections? Get nervous when I hear any medication with the ending -cortisone…

    • Suzy Cohen May 30, 2015 at 4:07 pm - Reply

      It’s very individual, and so is the dose. It can increase intracranial pressure through it’s mechanism of action, by sodium retention. Some Lymies need that and it helps, some do not. I can’t possibly know how you’d respond so if you’re LLMD approves it, then I would just start with a very low dose (like one quarter of a pill). I’d stay on that for a week or two to make sure you felt good before going up.

  46. Nancy June 3, 2015 at 1:47 am - Reply

    Hi Suzy,

    I pretty much have a constant low bp of like 100/60 – can fluctuate a lil [little] but overall that is about the number. I was at the doc last week and the med assistant took my bp and it was 100/60, her look was horrible and I asked why she took it again and by this time I was anxious and then i went to like 110/? I told her it’s most always 100/60 – then I mentioned it to the doc and told her about POTS and she looked it up and said nothing to be concerned about until it drops to ?/50 or below – do no get dizzy, not other symptoms you mention.

    My one sis says hers is low and she is older than I am – I do not care to go on another med. I take synthroid and cytomel for hypothroidism. I like my chips but do not crave them. Also use Real Salt. Also have gut issues among other stuff, but what am I to do – also wrote down some tests I thought she could order for me from your book “Thyroid Healthy” and she didn’t think they were necessary – no idea what to do. Would like to have some tests done, maybe to address minerals I may lack – Thanks for your input.

    • Suzy Cohen June 3, 2015 at 5:45 am - Reply

      Make sure she’s ruled out and/or tested for the following if you have hypotension:
      1) Anemia
      2) Hypoglycemia
      3) Tilt table test if you’re prone to fainting
      4) EKG and/or holtor monitor for heart function
      5) Adrenal function tests
      Good luck let me know how it goes 🙂

  47. Chris June 14, 2015 at 1:29 am - Reply

    How long for florinef to take effect?

    • Suzy Cohen June 14, 2015 at 4:55 am - Reply

      Usually the effects are seen within the first week, and then optimize with time.

  48. Adrienne July 4, 2015 at 10:12 pm - Reply

    Hello Suzy: What a relief to read information about POTS. I was diagnosed at 27 after collapsing at work at the end of a 12 hour shift in ICU, I could not function for the next 2 years. I was very stressed at the time. I was not diagnosed properly until a new cardiologist came to town and did a modified TT, which revealed POTS. I was hospitalized at the time and the only treatment was 5 cups of chicken soup a day, it took me 5 years to recover because of all the time spent in bed as I was misdiagnosed with CFS. I suddenly also experienced hypoglycemia, and have not since been able to tolerate sugar, even sweet fruit. I recovered to lead a semi normal life through biofeedback (parasympathetic training), but was ALWAYS less tolerant of exercise, heat exposure, and standing or walking slowly.

    I do exercise almost everyday cause if I don’t I am way worse. I am now 55 and notice that my symptoms are worse during menopause, I have SVT’s (12 Lead ECG confirmed upon ER visit), and so many ectopics, and wild heart rate increase upon waking in the am. I also can’t seem to take ANY adult doses of medications. I have found ONE thing that is helping that is Magnesium Biscyginate. I have been referred to a cardiologist (again) but don’t hold out hope cause all they will do is more echo’s, telemetry, a beta blockers. I am scared to take the Florinef [fludrocortisone], but I don’t want to end up like my Mom who also had this and is in a long term care facility with “dementia”.

    • Suzy Cohen July 4, 2015 at 11:23 pm - Reply

      Hi Adrienne, you’ve been through SO much! It is amazing that you’re where you’re at right now with all that!!! Thank you for the biofeedback recommendation, I think that could help others on this thread listening.
      There is something they have yet to uncover, and I’m not sure what it is. I’d recommend the “CardioIon Profile-Metametrix Kit” on this page: https://www.directlabs.com/suzycohen/OrderTests.aspx which is a direct-to-consumer lab company that I am affiliated with so that my readers can buy labs without having to nag or pester doctor. The lab kit comes to you in a little box, you take it to Quest or Labcorp and they draw the blood and mail in a pre-paid envelope. I’ve taken this test, and so has my husband twice. It’s normally more than $2,000 (!) but my discount goes to you so it’s much less (but still expensive).
      Then again, what is “expensive” right? Like… for my husband who has had so many cardiovascular problems it was scary, this test uncovered a ton of biomarkers that would have never been uncovered… and he would have ended up in an ICU or dead, so the definition of “expensive” is something to think about. Insurance may cover I do not know but I am confident a test like the CardioIon Profile holds some answers for you.
      I do know know about all those drugs and whether they are right for you, I just know about the drugs in a generic sense, and I know of their side effects. Some people do very well on them, others don’t.
      Just because mom has dementia doesn’t mean you will too. May we all live long enough to have to worry about getting dementia, for some of us (even young adolescents who follow me) they worry about being here tomorrow. Please don’t worry right now, it is not the time, you’ve been through enough, and moving forward with the right testing and your courage and persistence you will see a brighter future 🙂 You’re very bright!

      • Adrienne July 13, 2015 at 3:41 am - Reply

        Thanks so much Suzy: Expensive is all relative isn’t it, I am in Canada so will check this out. I so appreciate this thread, I like so many others I am sure just “lived” with these symptoms, wondering why we fainted so easily, or our hearts pounded just getting up from bed. I DO really want to emphasize that STRESS exacerbates POTS, learning to re regulate your autonomic nervous system has been key for me. Much appreciated and please keep up making medicine education so accessible! Adrienne

  49. Verna Hebert July 6, 2015 at 7:14 pm - Reply

    Wow ! I am now in my 60’s. When I was younger I was always being told I had low blood pressure. And I was told it was nothing to be concerned about. So I never gave it a second thought. I didn’t know I had a thyroid problem at the time. Later after I was diagnosed I read up on the disease. There I read I had almost every symptom Later talking to the doctor he said I probably had it as a child after having an x-ray done. It went undiagnosed till in my 50’s. Now I have high BP.

  50. Jenn August 4, 2015 at 2:06 am - Reply

    Ok, there seem to be a lot of educated individuals on here, including the author. I am stuck between a rock and a hard place. I was first dx with IST, when the Atenolol to lower my HR, dropped my BP, I was put on Florinef. It still wouldn’t keep my BP up and I was nearly passing out all the time. So they did an ablation. I suspected pots, but they swore up and down I didn’t have it…todays research says otherwise…but anyways….the ablation didn’t work. Now years have gone by and the IST is gone, but I what do you know, I have POTS. And it use to be pretty consistent, but now my body is so crazy and up and down with BP and HR, it’s hard to catch stuff. I have Gastropresis now too among several other things. The salt and compression stuff made me worse. So I stopped, and I got a bit better. I am on the waiting list for Cleveland clinic functional medicine. Is this a waste of time and money? Doesn’t seem like any of my Drs can help me because I don’t fit into their neat little POTS treatment box! And with all the research I’ve done on finding my cause on why I am continuing to get worse, they won’t test me for anything. They just keep telling me everything is normal, because I have POTS. But with all the major palps, temp regulation issues, neuropathy, female issues etc…where do I turn! Where is the best place to go for help?! I’ve also read that long term use of florinef can actually give your adrenal glands a vacation and even when you get off it, it could take over a year for them to start functioning again…so how can you ever get better? And the florinef isn’t even working 🙁 Any info would be great! Thanks in advance!!

  51. Issie August 20, 2015 at 11:59 pm - Reply

    Not all POTS people have low blood pressures. I’m HyperPOTS, with high NE levels and higher blood pressure. I still have the drops in Blood pressure- which is the orthostatic part of the syndrome. (This causes same symptoms as with lower bps [blood pressures] – dizziness, nausea and near faints. And many other symptoms.) But POTS is not DXd [diagnosed] based on bps – it’s based on heart rate response due to upright posture.

    Not all of us need more salt.

    I question this treatment as the proper thing for many POTS patients. It’s a “bandaid” with potential long term dangerous side effects. It does not “fix” the problem.

    Thanks for bringing more attention to POTS. We need as much exposure as possible. Onward in our journey. Science is advancing.

    Issie

  52. Darcy Groves August 23, 2015 at 9:36 pm - Reply

    so I’ve been running a BP of 90/60 since I was in my 20’s. Now a cascade of secondary diagnoses after the Hashimotos diagnosis last November. Adrenal test showed me high across the board. All my doc said to do was rest and study diet for Hashimotos. Listen. I’ve done pretty good considering I’ve had little to no direction from the medical world. But I’m severely underweight now (25lbs below low normal) and I’m not sure at this point what will happen to me. Keeping faith that I’ll survive. But I’m gettin no where with doctors

    • Debra August 25, 2015 at 6:14 pm - Reply

      I hear ya, Darcy. Just yesterday, went to a pulmonologist as a result of the ER finding inflammation in my lung. Did not give a full history, he doesn’t have time for that, but offered what I thought might be clues as to why I had a node in my lung despite my lungs looking great as stated by the pulmonologist. Throughout the conversation, I indicated I had radically changed my diet, used a sauna, took various supplements, coffee enemas, binders, and you know what he said? “Well, you look healthy. I think you’re over stressing things.” He has no idea the amount of work it takes for me to keep from looking like death warmed over, able to do my simple chores, AND make it to his appointment, pay $35 to hear him dismiss my efforts to regain my health.

      Twenty years I’ve been unwell, struggling, with no help from the medical community. Meanwhile, my body is now beginning to show evidence that the wheels are coming off the bus and they’re still flippant about it. They couldn’t blame everything I experienced, when I was 29, on age, but now that’s the new mantra. Same circumstances with the same old, and some new and scarier symptoms, such as tremors, buzzing/electrical feeling when waking or falling asleep, dizziness, memory loss, etc. I’m 49. It’s truly maddening.

  53. Debra August 25, 2015 at 6:30 pm - Reply

    Suzy,

    With regards to that medication, how is the steroid aspect of it different than steroids used to dampen inflammation? I’m being treated for biotoxin illness, Shoemaker protocol, out of pocket and network I might add, and steroids are a no-no for those who’ve been exposed to toxic mold, and possibly Lyme, if I’m recalling correctly. My blood pressure has been chronically low now for at least 20 years that I know of. I sometimes get headaches that are almost instantly relieved when I put salt in my mouth. I’m interested in the medication you suggest, but wonder about the steroid aspect.

    • Suzy Cohen August 25, 2015 at 9:54 pm - Reply

      You’re right about the steroids like hydrocortisone, prednisone, etc… it affects the HPA axis, they are a no-no.
      I don’t know if you’d need the fludrocortisone once the mold is fully treated. Who do you see, most people don’t even know who Dr. Shoemaker is. He’s doing some impressive work. Once your MSH is normalized, and MMP9 and TGF b is lowered, you may not get those headaches.

      • Debra August 26, 2015 at 1:43 am - Reply

        Thankfully, those headaches aren’t very frequent. Eating AIP changed my symptom profile considerably. I’m being treated by Dr. Mary Ackerley. It’s a very tricky and expensive condition to navigate. I also have UC-C, which complicates things and I have trouble with the binders used. My MSH and MMP-9 were normal last lab, but my TGF-b1 continues to climb (five times the high end range number last draw). *Sigh* It’s also possible I’m dealing with Lyme, it just hasn’t been confirmed yet. I don’t have enough cash flow to throw at this condition that I’ve dealt with since 1995. That year, after camping, I became ill with the classic Lyme symptoms and haven’t been the same since. I was also living in an older home with a musty smelling walkout basement. The two often go hand in hand it seems.

        “Most people don’t even know who Dr. Shoemaker is.” Yes, including doctors. Many, but thankfully not all, pretty much dismiss mold as being a major player regarding chronic illness. Thankfully, it’s starting to become better known and talked about.

        Thanks for your input, Suzy.

        • Suzy Cohen August 26, 2015 at 2:35 am - Reply

          Hi Debra
          I’m so sorry about your struggle. I really understand, more than people really know. Sam has suffered with unrelenting symptoms. I just don’t complain. I research and share my findings with the world. They seem to like me 😉
          PROTEOLYTIC ENZYMES reduce TGF beta. http://www.ncbi.nlm.nih.gov/pubmed/11561866
          There are many. One of my favorites is by Xymogen, ProteoXyme a little tougher to buy because it is sold through doctors, but maybe you can find it online… however, another easier to buy brand is Wobenzyme sold at health food stores, and there are others. Perhaps this will help you. Let me know ok.
          http://www.ncbi.nlm.nih.gov/pubmed/11822224
          Oh one more thing, statins, they reduce TGF beta too. I don’t recommend those long term due to the nutrient depletions, however a month may be helpful to reduce the levels quickly. http://www.ncbi.nlm.nih.gov/pubmed/10616843 (I do not know if Red Yeast Rice would work, but that is a natural statin, has similar depletions). Good luck, stay in touch.

          • Debra August 27, 2015 at 9:01 pm

            Thanks, Suzy. I’ll check into those and talk to my doc about them. Maybe, I can get it from her. Did you see the article about the “Utah drug research company, Curza, takes aim at Lyme disease”, by Chris Miller on KUTV’s website?

          • Suzy Cohen August 28, 2015 at 3:59 am

            I just watched it and emailed Ryan.

  54. Amy M August 28, 2015 at 1:35 pm - Reply

    Suzy..Let me first say I LOVE you! Thanks so much for bringing these issues to people’s attention because Doctors out there are keeping everyone sick.

    I take Florinef because I had very low aldosterone levels and I had been suffering from greying out every morning. I’m taking 3 quarters of a 0.1mg tablet every morning and my BP is still low 90’s over something like mid 50’s. (approx 90/50)
    I’m also still lethargic even though I’m being treated with T3 for hypothyroidism and adrenal cortex support.
    My question is this: How do you know if you’re taking enough Florinef? What’s the best way to dose it. Split the dose during the day or keep it as morning dose?

    Thanks so much!!

    • Suzy Cohen August 28, 2015 at 11:24 pm - Reply

      Hi Amy
      Thanks!
      Florinef doesn’t work for everyone. The trick is to take enough but not enough to cause hypokalemia.
      Best to take it as morning dose like you’re doing, not split it (although you can if you want).
      Have you had your adrenals tested? Hypoadrenia will cause low BP.

Leave A Comment