Salt question & new cerebral blood flow study

[bombsh3ll]

Hi, I have just started another trial of fludrocortisone, transitioning from licorice root. Since becoming unwell with POTS 3.5 years ago, once I read about the standard advice to chug buckets of salt and water every day, that's exactly what I've been doing although have not noticed any benefit. I usually take 1-2 teaspoons of salt per day. Licorice root was fantastic for a few months but then the effect wore off. Testing shows I produce no renin or aldosterone. 

One issue for me is that even when sitting, with a perfectly normal HR and BP, I feel constantly lightheaded and miserable, and am certain the blood flow to my brain is very poor. During the first year or two of having POTS, I had a reasonable quality of life sitting and felt unwell only when standing. 

I just came across this study https://www.sciencedaily.com/releases/2018/01/180116131306.htm on the effects of high oral salt consumption reducing resting cerebral blood flow via mechanisms not connected to blood pressure. Granted we are not mice, but the physiology may not be all that different in humans.

I would really like to stop guzzling all this salt. I never added salt to anything before becoming unwell. I also feel that with mineralocorticoid replacement it should not be necessary. As far as I know, people with Addison's disease who are replaced with both hydrocortisone and fludrocortisone get to eat and drink normally. 

What does everyone else think about this? If you have a good endocrinologist or autonomic specialist do they still have you taking heaps of salt on fludrocortisone? Maybe it is different depending on whether you have normal aldosterone production to start with but still have POTS and the fludrocortisone is additional, vs having deficient aldosterone to begin with?

B x

 

[Guest KiminOrlando]

I am on fludrocortisone and do not salt load. I do have to supplement with potassium and occasionally magnesium. I also drink plenty of fluids, especially in the mornings. 

They initially thought I had Addison's, but my adrenals rebound late in the day, so they ruled it out. Depending on the situation, I sometimes have to use a corticosteroid because I don't make enough cortisol even though my cortisol stimulation test was 'normal'. I guess my body doesn't do it correctly unless it is prompted. As of yet, that is unexplained. 

Good luck with your fludrocortisone trial. I hope it works for you this time.

[Always hoping]

I'm on fludrocortisone due to not producing aldosterone also and I don't actually salt load.  I may increase my salty foods at times when I am feeling low or in hot weather which sometimes helps.  I notice much more of a difference with fluids than salt.  I can always tell if I haven't drank enough and I often feel more of a positive difference with Gatorade than water.   Good luck with the fludrocortisone.  While I can only take a small dose of .05mg daily, it has helped manage many of my symptoms greatly.  

[Lily]

I was told that the florinef won't keep my blood volume up if I don't load up on salt and water.

[Bluebonnet08]

I don't take florinef, but for me, it was a very fine balance with the salt, too much and I would feel worse.  I get part of my salt now through saline IVs which seems to help.  

Also, a few years ago I had a complete iron panel and my ferritin was very low.  I worked for a year to get it up and it has helped a lot with the lightheadedness.  

[Always hoping]

13 hours ago, Bluebonnet08 said:

Also, a few years ago I had a complete iron panel and my ferritin was very low.  I worked for a year to get it up and it has helped a lot with the lightheadedness.  

Bluebonnet08 - Same here.  Iron infusions have been a huge help for me.

[bombsh3ll]

Thanks for the replies! I tried dropping the salt but found I was peeing even more than usual so have decided to keep it up for now. I also take a small dose of desmopressin at night which can cause hyponatraemia, so guess the salt helps avoid this risk too x   

[yogini]

Studies on the effects of salt on normal, healthy patients would not apply to POTS patients.  It's generally recommended to take salt with florinef - florinef causes the body to retain sodium.  If you don't take enough sodium the florinef might not have any effect.  But ask your doctor or pharmacist.

For a healthy person, if your kidneys are functioning normally your body would get rid of the extra salt.