CBC sodium Relation to Aldosterone/Fludrocortisone

[Trying]

If CBC shows normal sodium, does that mean aldosterone is being produced normally and there is no need for fludrocortisone? 

Our daughter's CBC sodium has been normal. She has taken fludrocortisone .1mg for 3 weeks and she has had no improvement in her debilitating lack of energy and her blood pressure declines 30 (SBP) upon standing 3 minutes.

Her legs feel heavy all the time, but especially when she is standing and when she walks. Since her sodium levels have been normal, does that mean the orthostatic hypotension is caused by something other than lack of salt retention? 

 

[bombsh3ll]

 

14 hours ago, Trying said:

If CBC shows normal sodium, does that mean aldosterone is being produced normally and there is no need for fludrocortisone? 

 Not necessarily. You can have normal sodium but still have low blood volume. My sodium tends to run low end of normal/just below normal, and I do not produce any detectable aldosterone. 

What happens if you are losing sodium due to low aldosterone is you also lose free water with it, so they balance each other out. 

This is because a) where sodium goes, water follows and b) if the body detects low sodium it will also lower production of the water retaining hormone ADH, so less water is conserved. 

Under normal conditions I produce no detectable ADH, BUT under a hypertonic saline test with an infusion of very strong saline solution, I did produce it, indicating that I CAN produce it, I just don't because I don't keep sodium. 

If there is a malfunction in one system the body will try and compensate to keep the sodium level in range as too high or too low is dangerous.

The only way to properly measure blood volume is with a specific nuclear medicine test designed for this purpose. Standard blood tests will not show this. 

It would have been best to measure aldosterone BEFORE starting fludrocortisone in order to know if it was deficient or not - did she have it measured? Even in people with POTS/OI/OH etc whose aldosterone is normal, some still benefit from fludrocortisone though. 

14 hours ago, Trying said:

Our daughter's CBC sodium has been normal. She has taken fludrocortisone .1mg for 3 weeks and she has had no improvement in her debilitating lack of energy and her blood pressure declines 30 (SBP) upon standing 3 minutes

I am sorry your daughter isn't feeling any better. I understand though that it can take some people weeks or even months to feel the benefit from fludrocortisone. Unless she has had any significant side effects it is probably better to persist with it in order to give it a fair trial. Does she have a follow up arranged? Some people benefit from a higher dose so it may be worth discussing that. Also do ensure her potassium is monitored regularly, especially if it is not being supplemented. 

I hope she manages to get some relief.

B xxx

[dancer65]

Hi 

I was on florinef increased salt and fluid  for 2 years I was on 3 mg a day but still had drop in BP and sympton relief was very small , eventually I was referred to cardiologist who changed me to midodrine , it took some time to increase the dose  to 7.5 mg X3 daily but it stopped the drop in BP and has stabilised it on the whole, in fact it has had a knock on effect of a huge improvement in many symptons  for me which meant I could make more improvements through strength exercises and daily I practised standing still with a chair to grab onto just incase !  At my worst I had terrible leg and arm heaviness /pain, any demands of exertion would send me into presyncope or a faint , it felt as though the muscles had run out of energy. I do have JHS so obviously vaso constriction is my problem ! 

Florinef really helps a lot of people and it does take time to improve BP  but just wanted to share my experience with you as I thought it maybe helpful if you daughter doesn't see an improvement which I hope she does soon ,fingers crossed for her.

 

[Pistol]

4 hours ago, dancer65 said:

in fact it has had a knock on effect of a huge improvement in many symptons  for me which meant I could make more improvements through strength exercises and daily I practised standing still with a chair to grab onto just incase ! 

Yes - that is KEY information!!!! With dysautonomia any med will often be started at the lowest possible dose and then increased to a dosage that shows improvement. ( If the lowest dose is not effective does not mean the medication does not work - it just may need to be increased ). AND - once the improvement shows we need to get exercising, like dancer mentions. The medication can get us to where we can tolerate activity but WE have to be active!!!! I hope you daughter will find relief soon!