I think, sadly, most docs don't know renin and aldosterone if it hits them in the head.
So they won't think about it and yeah, most hate patients that try to tell them anything. Been there done that - have several t-shirts.
You need a better endo - with the tests showing the low aldosterone you should be able to get in to a university hospital to a neuro-endo - try that.
For some reason I knew right away it was going to be a bad appointment. He acted so defensive and I have NO idea why. He made me wait 40 minutes and I didn't make a peep and then acts like hes grilling me.
When I said I take sodium chloride twice a day he gave me the weirdest look EVER. Like I was an alien. He says he doesn't feel confident that I have a BP problem lol. I was like "my BP was 81/53 earlier isn't that low?" I guess he didn't like that.
He looked at me and said "So what are you hoping for me to do?" and I said "Well my PCP spoke to you and he told me to see you about my adrenal glands" and this endo said "Well you DEFINITELY don't have adrenal insufficiency and I think all the workup needed has been done so I'm not sure what you're looking for. I DO think you have PCOS but thats a different issue" and I said "But I've only had a couple of cysts and only one at a time are you sure that is enough to be PCOS?" (As you can see I was getting bolder by the minute because he wasn't making a lick of sense) and I said "the sodium has made a tremendous difference" and he said "Well I wont tell you not to take it but it isn't treating the issue" and I said "Well what do think that is?" and he simply said "Panic attacks"
I almost stormed out..
So my petechiae, my low glucose levels, my low blood pressure, excessive hair, excessive urination (up to 20/30 times a day and not with excessive intake), my excessive sweating through clothes constantly, (I weight 178 and I'm about 5'6 so Im not enormous), my excessive third, salt cravings, chronic low grade fevers, joint aches (sometimes severe), my low platelets, high Free Test, low Aldosterone, sudden inner tremor out of no where, feeling like I am falling and trouble speaking, blurred vision, low potassium, chronic microscopic hematuria, high morning cortisol (he didn't bother to test the evening), are all.... dundundun...anxiety.
Yeah right! The only the thing I can agree with is that whatever this is makes me feel panicky...I have become very very easily startled despite my strong anxiety medication. If I forget to take the salt I'll get this weird sudden feeling of terror for no reason whatsoever (I could be sitting and reading a funny story and it would happen out of no where)
So I guess to him, the salt is just a placebo? Because the salt completely eradicated the sudden terror feeling that my anxiety meds could not...
I don't get it...I don't know what to do from here
LOL... I have normal imaging all the time and they finally go in and the doc has to come out and apologize for waiting so long, or wonder why it is so bad in person etc...
I must have eaten lead as a child.
Sounds like an endiot. *sigh*
Like with my Gallbladder....they did an MRI, a colonoscopy, a CT scan, an ultrasound with CCK and I was grateful that GI doc did that much but then said "Must be IBS. No point in doing the HIDA scan" Went to a 2nd doctor who immediately ordered a HIDA Scan- result was severely abnormal (3% [yes 3%] functioning and had to have surgery right away...that's the way it is with me...they don't seem to know which tests to run until I've been sick for so long.
Saw the endo my PCP wanted me to see. Completely dismissed my situation and Dysautonomia Dx that was recently reaffirmed. Said theres nothing wrong with my adrenals or thyroid and didn't know why I was taking salt pills.
A total jerk. Glad he didn't ask me to see him again. But I know this isn't uncommon, especially for people like me with ASD (to doctors that means "every symptom is anxiety" until they are proven horribly wrong).
That is wild about the skin symptoms. I have no idea. I hope you can catch it and show the doc.
I got my DNA done and it shows a higher possibility of blood cancers. Had an uncle die recently of lymphoma.
POTS makes your PB drop when you are laying down. I also drop when I am feeling sick or sickish like today - so mine was 100/62 today. After a salty lunch.
Just took my BP while I was lying down and it was 81/53 so I took an extra salt tablet just now. I wonder if this is why I am craving cigarettes like crazy if my BP is that now when Im lying down
The weirdest part of the whole thing is that its only my arms that are affected and it can show up at any time. Definitely petechiae (that was confirmed)
Hi there, no hematologist as of yet. A dermatologist told me to go see her right away if it shows up but its transient so I would have to rush to see her. It usually only lasts a couple of days. Sometimes I get a fever with it too and flu like symptoms. Doc immediately checked my lymph nodes but my WBCs tend to run higher but not too high only 11-15,000 and then lower platelets so they said I must have ITP because aside from a bone marrow biopsy I doubt they would know what it is exactly
Of course I prob should see one..my grandmother on my dads side died of leukemia as did her mother and my great grandfather but my grandma and great grandma on my dad's side worry me more as they were in their early 50s when they suddenly died.
I have no idea about that.
Have you seen a blood doc?
I think my PCP sees it as a liability if he Rx it and doesn't know what he's doing which he usually seems like he generally does not know what he's doing.
Have you ever gotten petechiae from any hormonal imbalance? For years on and off I will develop lacy ribbons on petechiae on my hand and arm. Hundreds of pin prick dots. Doctors said even at my lowest platelet count (115K) that it would not cause this...so they said "maybe a virus" ...lol sure a virus thats been ongoing for three years now
I find your pcp comments a bit... strange? If you need the medication and your tests hold it up, why not? I mean, they would not hesitate on something for high BP so why not low BP?
As for on it forever - I am simply not sure. That may be true as most endocrine disorders are pretty much forever but then why wait - you need it! I have been on it for years and I can tell you I have had to vary my dose.
What most won't tell you is that you should taper up to the dose - so if they give you a script for one pill, a nice normal dose, you should do a 1/4 pill for a few days then 1/2 then a whole. A tiny pill can make you get edema like crazy and you can gain water weight (we call it the florinef fluff) if you don't drink water and your body chemistry is changed by the tiny little thing. I had a problem at first, then I stabilized and I am ok now. Ask a pharmacist.
It is an old medication - now generic. Many but not all of those with adrenal issues take it - for the rest of their lives. I take 1.5 pills. No one ever tells me - and I have a good set of endos - that I should ever wean off. I need it to keep a stable BP.
Two doctors have mentioned the possibility of Rx that med but my PCP says once you're on it - its a done deal and he doesn't know if taking it for decades will cause problems.Any side effects?
As far as I know, it is treated with fludrocortisone aka florinef. It *holds* the sodium as when you have an issue with renin/aldosterone you simply don't hold it and you have to consume more, but can get into trouble easily so you need support to hold sodium to balance sodium and potassium.
I take my florinef with a wonking 1G salt tab - and another 1g salt tab at night - and salt my food copiously. :) With that, I manage to get my BP just to low normal at best.
Yes, I would guess the sodium IS helping you.
Yes, sorry was copying and pasting...
ACTH is 16 and Aldo is 2, I was sitting for the test (not standing or lying down).... but dont they treat hypoaldosterone with low sodium? Thats why I am confused since sodium is what is helping me
You typed more than you needed - is the ACTH 16, and Aldo 2?
You would be supine for aldo - no one stands for them unless you have a crazy doc who wants a super accurate test (have had one!!!). So that one is low.
You don't have to type the rest of the stuff...
Although it seems that it might be hyper somehow and my sodium tabs lowered it? Because it discusses using a low sodium diet for treatment of hypo and yet the salt tabs are what brought me back to life...
I agree, my PCP called and said my AM Cortisol was high and said he wants the endo to take this from here. No mention of aldosterone - perhaps because I couldnt salt fast for it and it was done at the wrong time.
ACTH-HIGHLY SENSITIVE, PLASMA (range 6-50)
11/04/13 1231 1104:S00063R 16 (1)
1. Reference range applies only to specimens
collected between 7-10am.
Test Performed by Quest, Chantilly,
Quest Diagnostics Nichols Institute,
14225 Newbrook Drive, Chantilly, VA 20151
Kenneth Sisco, M.D., Ph.D., Director of Laboratories
(703) 802-6900, CLIA 49D0221801
ALDOSTERONE,SERUM
11/04/13 1231 1104:S00064R 2 (1)
1. *** Unable to flag abnormal result(s), please refer
to reference range(s) below:
Adult Reference Ranges for Aldosterone, LC/MS/MS:
Upright 8:00 - 10:00 am < or = 28 ng/dL
Upright 4:00 - 6:00 pm < or = 21 ng/dL
Supine 8:00 - 10:00 am 3 - 16 ng/dL
Test Performed by Quest, Chantilly,
Quest Diagnostics Nichols Institute,
14225 Newbrook Drive, Chantilly, VA 20151
Kenneth Sisco, M.D., Ph.D., Director of Laboratories
(703) 802-6900, CLIA 49D0221801
I sounds to me, a layman, more like hypo-aldosterone (I think I mis-typed before hyper LOL... ). Aldosterone does not have a rhythm like cortisol - so there is no preferred time of day for that one.
Your doc should look more into the renin/aldosterone loop?
Morning Cortisol today @ 720AM - 27.5
Hello there, well my Aldosterone came back at 2.
I know it was 39 1hr after stimulation which is how my cortisol seems to respond by multplying many times (5 to 42 for cortisol and 2 to 39 for Aldosterone) Because the test was at noon I am unsure if its abnormal or not but I would think if the aldosterone is supposed to go down all day it shouldnt be at a 2 at noon... I wasnt able to salt fast for it because I would probably have fainted if I had..
Who knows I guess..
Cortisol done at noon should be lowering - but I don't test at noon - it is not a diagnostic time unless you are testing all around the clock to see if you have a loss of diurnal rhythm (low in morning, high at night) or whatever - a random afternoon test unless super duper high or low is not so useful...
I don't know if DHEA is effected by the stim test. Not the same hormonal loop... maybe? Never got it tested the same day. None of my docs do testing after a stim test.
Have you tried taking D3?
Okay without stimulation but at noon just like the previous tests..looks like my adrenals are ok... *sighs* I am very sad. I thought I had found the answer. ACTH and Aldosterone havent come in but...I have a sinking feeling my PCP might be wrong about the adrenals. I wish the endo had thought to test the other things BEFORE giving the ATCH shot...*sighs*
@FREE TESTOSTERONE PROFILE
ALB 5.0 (3.5-5.2)
TESTT 34 (6-82)
TESTFREE 6 (1-11) ***Compared to 6.2 with stim**
SEXBH 31 (no range)
CORTISOL 5.9 (@Noon-1231) **Compared to 42 1hr after stim)**
DHEA SULFATE 292 (45-320) **Compared to 417 1hr after stim**
I found a range for the SEXBH/SHBG
Blood values[edit]
Reference ranges for blood tests for SHBG have been estimated to be:[9]
Patient type Range
Adult female, premenopausal 40 - 120 nmol/L
If you have the diagnosis of low glucocoritocosteroids (sp!) - that is low cortisol. That is AI. It has many names.
(My cat is laying across my arms as I type this so I am having a difficult time).
You can still pass a stim test and still be borderline - it can be the last gasp. With sodium and potassium abnormalities, it is supicious to have issues. It can still be just a renin and aldosterone issue alone or in combo with the cortisol but you need an expert not just a pcp. This is beyond what a pcp can order or interpret.
I did a set of dna testing myself - you can get quite a lot of testing for $99 that covers many diseases and they add all the time. It does have the hypothyroid and some others, not sure about the MTHFR (my mind wandered in a bad place with that one I tell you) though...
D can really be nasty when it is low. Get a good supplement and take a few thousand i.u a day. I think Enzy or another person has some posts on it and there is even a forum devoted to it now.