Finally!!! Something!!!

[Heartandsoul]

I don't have the whole story yet. But some clues. I think important ones.

One of my 1st ?s on Dinet was about low sodium. Maybe a year ago...

PCP told me use extra salt. Cardio doc said salt was band-aid w/o finding out why low NA. First dx was OI then rhythm md said POTS but bare bones answers just use salt.

Finally recently another md said from what I told him maybe adrenal insufficiency. Tests showed zero aldosterone. Zero ADHormone. He will do more tests.

I don't pass tons of urine like most POTS pts. Pass less urine than normal. I wish I passed normal urine for I am salt sensitive and easily edemic. But I need fluids. It was suggested that although edemic I may be chronically dehydrated as fluid goes to belly, face, thighs, feet and not to rest of body. But I need more work ups. I feel like a "walking" contradiction.

I also have low osmolality wc I'm told fits in and just found that out too. Another recent test shows I am passing low NA through urine.

So I feel that finally I know more than just "you have low sodium.....so take in salt...bye bye".

It is a start to have some answers. Now I need more answers.

[sue1234]

That is great info to find! Now on to see how your adrenal's respond to a stimulation test!

I tend to have low ADH(0.8) and on the low side for aldosterone(3). I've had my adrenal function tested a few different times, but mine function fine.

Thinking about how your fluid goes to the stomach, extremities, etc., have you been tested to make sure your protein levels are up to par? If protein deficient, your fluid will seep out of the vessels into tissues and make them edematous.

[Heartandsoul]

Thanks sue1234 for your response. I'm not sure of the next step but that test you mentioned...what does that show? Is that to look for Addisons?

I'm glad that you're function is fine yet with low numbers were you told you had a degree of adrenal insufficiency?

Thank you very much for the info on protein. That could be very valuable to know. I want to get that retested as I think mine was in normal range but maybe at the bottom. I have to look again at the comprehensive panel results to double check.

Best,

H&S

[sue1234]

The Cortrosyn Stimulation Test is what they do. They take a baseline of your cortisol levels(have those been tested in the morning?), then inject ACTH to stimulate your adrenals. The cortisol needs to go up(I can't exactly remember!) and at least double in value, or be over like 18(not exact info). If it doesn't go up, it means your adrenals cannot respond to stimulation.

My cortisol usually started around 10-13, and then usually tripled or quadrupled, so I was told I was fine. My morning fasting cortisol the last few years has been in the mid-20s, so yea, my adrenals work fine. BUT, don't understand why my ADH and aldosterone are on the low side.

Let us know what you find out.

[Heartandsoul]

Sue1234

Thanks so much for the explanation. I see that your adrenals work fine. That is great! Yet your ADH and aldosterone remain low. Hmmmm. Just wondering how your overall getting about is if you don't mind me asking.

Total Protein is 6.9. Ref range is 6.8-8.6. I will get that rechecked because I googled after your comment and see that you may be on to something.

Best

H&S

[sue1234]

I have to urinate ALL the time, but I also drink ALL the time! So, I don't know how much it all affects me. I cannot function, as in I don't drive and get work at a job.

[Heartandsoul]

sue1234

Do you have a thirst issue or do you drink lots because of advice to replenish fluids?

I drink lots because I'm so thirsty. This thirst arose when I had CNS/ brain infection from Lyme.

I too am over 50 yrs old. I had some pooling and brain affected issues from Lyme but about 2-1/2 yrs ago another major infectious assault of a diff nature triggered severe base of the skull pain and racing heart, worse pooling, adrenaline, and more.

I read your profile and learned a bit about you ...when POTS took over. When you look back to way earlier times do you see evidence of any symptoms. Also are you medication tolerant? I'm very intolerant.

I am unable to work as well. It's not so easy sometimes....all of this... but I try to keep believing....

Best H&S

[sue1234]

I drink because I'm so thirsty! I'm not sure if it is a real thing, or because a few years ago I purposely increased my fluids and now I'm just used to that amount.

Before POTS hit me in January 2006, I had no limiting symptoms. I had had issues with Hashimotos that affected my energy levels, but nothing that affected my ability to get out there and go/do what I wanted.

I spent my whole life from ages 20-40 with a normal blood pressure of 90/60, but I never felt lightheaded or anything due to it.

I've been diagnosed with chronic Lyme by an alternative MD, but not sure if it's "real"(I've become skeptical of some of these diagnoses, but do keep up with the latest on all that). What I mean by that is, my husband and son last year had fever and a ground-zero area on their skin that the doctors determined was from Lyme. They had this for 2 weeks and had to take a couple rounds of antibiotics. They are both fine now(thank goodness!). I had NO such episode, other than I pulled a tick off of me at various times in my childhood/early adulthood. As everyone I know, we all played outside, all the time as kids. We all got ticks, and almost everyone I know functions as a normal, working person. So, I'm not sure if Lyme is MY issue, but I do know it is for others(such as you, and how my husband had it).

[Heartandsoul]

Sue1234

I'm glad your son and husband in a timely fashion so that they are fine!

Lyme is tricky as I'm sure you know in that many never get any Lyme rash nor the flu-like symptoms. It is not always easy to get a definitive Lyme dx. Just curious....did your naturopath give you a clinical dx?

In spite of me having 4 HUGE raised, warm, pink areas along with a flu-like thing/ fever with one of the raised areas was a classic bullseye It took 4 years for a dx. after some spinal fluid was taken and examined and the doc put that all together with all of my symptoms. I was a systemic mess incl. brain. Yet with all that going on all I was positive ONLY for was the IFA. I was borderline positive on the Elisa and completely and utterly negative on the Western Blot wc I would learn in time that many fall through that crack as some of us don't build up antibodies to get positive bands on the western blot.

(Btw...I learned later on that where I got those rashes was deemed a highly endemic area for Lyme infected ticks)

Meanwhile during that time my heart beat at a steady 62 bpd and I never had bp issues. like you I had low bp but never any dropping of bp while upright. Never awoke with heart racing and adrenaline kicking up.

It took many attempts for the Lyme to improve. Finally I was put an aggressive course of abx for a lengthy time. I got lots better. WAY better.

But then high level, stressful events came into our lives, one after the other and that began to take me down.... piece by piece... way diff than Lyme. I read recently that this can can be the cause of adrenals being affected. But kinda knew it before the blood work etc verified this. I felt like my adrenals were shot. These stresses went on and on for a long time.

Then on top of these major stresses came the second major infectious assault (not Lyme) and I was very very sick and needed IV antibiotics for 6 weeks. THIS was the straw that broke the camel's back as it triggered POTS symptoms. It was so hard to stand up plus more.

If you don't mind me asking.... am wondering what is Hashimotos disease? Do you still have this?

Best

Heartandsoul

[sue1234]

Hashimotos is an autoimmune reaction against the thyroid. My thyroid had swelled and shrunk so much over the years, the surgeon that removed it said it was like shrink-wrap over my trachea.

I had that removed in '08, and since then I've read it can flare up due to a gluten sensitivity. Well, I later found out I had antibodies to gluten, so I wish I had known that back then to get off gluten and see if my thyroid would have settled down.

I had the positive Lyme in the tests that are NOT CDC, and in the CDC, I did not have the required 5(?) that were positive. I also show chronic reactivated EBV. Now that one I could believe could be an issue! But once again, main stream medicine doesn't believe in it.

[Heartandsoul]

I do feel for you and understand regarding the gluten sensitivity. And yes...some things main stream medicine don't buy into.....

[tampafd]

I am 57 years old. When I was 18 my original family doctor diagnosed me with celiac disease after several doctors told me it was all in my head and did not believe in gluten intolerance. One doctor put me on bran cereral. Thought I was going to die. It's amazing how much incompetence there is in all professions out there.