Lab Results For Adrenals

[morgan617]

As some of you may have read in other posts, I had testing done for aldosteronism several weeks ago and never heard back from the doctor. I assumed they were either normal, or abnormal, but oddly abnormal, so he had no idea what to do.

People have been asking, so i just sent a note requesting them, not a phone call or anything, just a copy, to let people know that were wondering. The problem with these tests is, you have certain guidelines to follow for accuracy. Fot instance, you are supposed to eat a high sodium diet for several days, not be on antihypertensives, or estrogens, and the aldosterone levels should be done in a 24 hour urine for much higher accuracy, as it tends to flucuate a lot.

Well, I was on beta blockers, hormones and eat a 1 gm sodium diet. So I knew going in, the aldosterone level would be way off. They recommend a 24 hour urine for sodium levels, so they can titrate the test to those levels, as how much sodium we spill affects the level readings. That, of course, wasn't done. I do blather on don't I?

Anyway, my renin was non existent at 0.1, with normal uprights being 1.95-3.95, per our lab. My aldosterone was 12, which is high for supine and normal for upright. I was in my w/c. You are supposed to walk around for 1/2 hour or be standing for 2 hours for accuracy. UH no way on either of those.

I guess my whole feeling on this is, how nice it would be to have ONE validation before I die, that not everything about me is a mental problem. I thought I was over that, but I guess not. Anyway, she said they hadn't called, because my tests are abnormal, but he's not getting any answers from the endos here and it's not his specialty, so he's not sure what to do from here. I guess he just assumed they were going to be just fine and totally normal.

I guess I will just see what happens, but there you go, for the few people here interested......weirdwordymorgan

[pickledfairy]

Hi Morgan,

I recently had repeat adrenal labs done due to wacky symptoms that have been uncontrollable with meds. I was not told to stop my beta either, however, I did do the 20 minutes upright (strolling around the office...not fun but was able to get through) and did do the low sodium diet. My aldostrone was low normal, but my renin was nearly nonexistent as well at 0.2...my neuro was the one who had my PCP do the test, now my PCP says she doesn't know how to interpret the results and wants the neuro to explain to me, but he hasn't returned my calls or emails. I am assuming he isn't worried (but we all know what our mothers told us about assuming .

I would be interested to hear what your doc says about your results and how much of an effects the betas have on the results. So, keep us posted! You would think that if they were worried about the betas effecting the results they would have told us to stop them! Gotta love complicated labs!

Sheridan

[goldicedance]

Morgan,

One time when I was in the hospital, an endocrinologist wanted to run this test. He told me I had to stand upright for 2 hours. I said that if I could stand upright for 2 hours I would not be in the hospital.

Golly, who invests these tests?

I hope that you can get some satisfaction.

Lois

[corina]

morgan, as there is too much brainfog in my head, i don't really understand how to interpretate (is there anything to interpretate i was wondering???), but i wanted to let you know that i am sorry you can't get more help. if anyone deserves it . . .

i decided to stop doing tests for a while (as long as my family needs me so much), just being at home in a state i can live with (you know how we always have to accept geting worse) is most important for me for the time being. also, i can't face anymore doctors who doubt our dysautonomia and how it affects our lives. i want to be happy right now!!!

sorry these docs are always letting you down, morgan,

corina

[cardiactec]

morgan,

you said "I guess my whole feeling on this is, how nice it would be to have ONE validation before I die, that not everything about me is a mental problem."

I understand where you're coming from......what HAVE YOU been diagnosed with? just pots?

i think it's not so much a validation feeling (for me anyway) as it is more a way to understand my situation better -- a true diagnoses helps to move beyond where we are at symptom-wise and how we go about our lives, because we can adjust and adapt better when we know more definitely what we're dealing with --

....it's like someone telling you that they are sending you on a vaca somewhere - well, the first thing you'd want to know would be "where are you sending me to vaca"? -- you'd feel pretty uncomfortable and agitated if you packed your suitcase full of bathing suits and short/t-shirts and you ended up in a freezing cold climate! you would both WANT AND NEED to know HOW TO PACK for the trip (winter clothing vs. summer clothing) in order to adapt and adjust to the environment............getting a diagnoses i believe is similar to this analogy...........once we know exactly what we're dealing with, it helps us to better prepare for our journey....ha, it's not a VACATION by ANY stretch of the imagination, but a journey nevertheless. ...

keep hanging in there morgan.....i hope you get some more definitive answers soon....

[morgan617]

Thanks guys, you know I have never really been officially diagnosed with ANYTHING. My pcp says I have dysautonomia, "probably" a hyperandrenergic type, because of symptoms, but not one doctor, not even him and he's my biggest supporter will say I'm sick, without saying a large part of it is psychological. He always adds, that anyone that's felt as crappy as me for so long, would have psych problems, but somehow, that's like getting a left handed compliment....My cardio knows what periodic paralysis is and does believe I have that. No one else knows what it is, or believes it exists.

This is the only test I've had since I got my pacer. I don't do any testing anymore, as a rule, as I am so burned out from it, and even more from being told 100% of the time I'm anxious or mental. I see them half dead and they ask if I'm anxious. I don't have the energy to be anxious!

I am guessing they will be calling again...which is why I waited so long to ask for the results...it's like opening a can of worms. But i am not getting anymore tests. They refuse to do them correctly and they can certainly read the protocals as well as me, and it is therefore a waste of my time, health, energy, and money. I am thinking he didn't follow them, as it skewers things to look more normal and they still didn't turn out that way.

Cardia, you are right. it's like having no idea what I'm supposed to cope with and therefore how do you? I just sit back and wait for the next thing to happen, and anymore, I don't even tell any doctors.

Corina, my labs do indicate hyperaldosteronism. I have had an MRI and CT scan several years ago (like 10). Tumors of the adrenals only show up about 30% of the time, because they are so tiny, as a rule. Another cause of primary type is idiopathic hyperplasia. The adrenals just produce way too much aldosterone without a tumor. it is much harder to treat. It causes you to have high blood pressure, low potassium, paralysis, muscle weakness, fatigue, etc. Like every single symptom i have. The thing that struck me is the paralysis, they have no idea why i have it, except it's psychogenic and I do it for attention. (except my cardio)... Yes, that is why I never leave my home anymore, to get all that attention. I hide here, for fear someone will see it happen and call an ambulance, so i can be humiliated and called somatic in the ER.

It was the last thing I decided i would ever talk to my doctor about. I fit the profile and he says I CAN'T have it, because it's rare. I can sure as shoot have every rare mental illness in the world though. I guess that's why I talked about one little validation, but i realize, finally, that's not going to happen. He will feel pressure now to do something and i didn't want that. I told his nurse to tell him to stop investigating, i wasn't interested in anything anymore, and I was tired of doing all my own investigating. She said she would tell him.

I guess occasionally i do get a little envious of those who really do have a "real" diagnoses, who've been able to be worked up by people who know what they are doing. Most of the time I do okay, but then when I do something like this, my little green head rears itself. You guys don't feel better physically, but hopefully some of you have the validation of knowing some doctor somewhere actually believes you. That's what i will never get, and sometimes it's just bothersome. And something i just have to work out for myself. Big girl panties. I know I'm sick and not faking and I guess that will have to be good enough.

Anyway, it's the validation here that is my glue that holds me together anyway....so thanks guys.....gratefulmorgan

[corina]

morgan,

it is your last sentence that caught me:

"i know i'm sick and not faking". this is exactly how i think about it. although officially diagnosed (which i know makes a big difference between us), there still are people thinking that it must be in my head. but as (i think) ernie said: "it IS in my head, but NOT in my brain". we have to rely on ourselves and KNOW we are ill, that HAS to make us stronger in the end.

take care and hold on,

love,

corina

[flop]

Morgan,

I can only imagine how disheartened you must be feeling right now. Talking from experience, perhaps your doc didn't follow the protocols because they didn't read them? We know that the "normal" reference ranges only apply if you follow the protocols. Hopefully he can find someone who can interpret the results without having to repeat them?

Take heart in knowing that we here know and belive that you are genuinely sick (from physical not mental causes), I know we are not your docs but we are here for you.

I had problems at work because everyone thought I was faking my blackouts for attention (who would want to repeatedly injure themselves, loose their driving licence, get sacked and become totally dependant?).

My cardiologist understood. I had been diagnosed with a reactive depression years before I developed POTS but the "mental health" label sticks forever. What he told me (and I think possibly what your doc was trying to say) is that yes I have got psychological issues (like being afraid to go out alone) but they are all due to my physical illness.

My GP puts it as "having a normal reaction to an abnormal situation" (i.e. anybody going through what we do daily would feel like we do - fed up!).

((((((((((HUGS))))))))))

Flop

[Guest tearose]

morgan, I ache with you. I had to stop looking for the validation from most of the medical system and I hope you will too!

All we need is one or two good professionals and the support of friends/family and we must stop looking for the "gold standard" of tests because these tests just do not exist.

Spare yourself any testing and aggravation you don't believe in and know that you will go down in the Journals of the Medical world as one of the "founding foremothers of dysautonomia".

tearose

[anna]

Hi Morgan,

Has your Endo. or other Dr.'s ever mentioned MEN1 to you? My GP is thinking along these lines with our family, as we have some very odd things going on.

Anyway I hope you find a 'new wind' soon to help you prove to these medic's that it is not all in your mind.

It's an awful place to be, this place that we actualy want to have some thing show up in these tests just so we can say I told you so.

I got truly fed up of haveing to tell my daughters paed. that she is not attention seeking she is really ill and it sadly felt good when a new paed. took over and straight away said something was wrong with our daughter so sad we have to feel like this.

[morgan617]

The only endo I have ever seen told me up front...before a single test was done.....that she KNEW I didn't have any endocrine problems. She is supposed to be the best in my city and even more scary...she takes care of my son and his hyperparathyroidism. I worry more about him than myself.....

[anna]

Can I ask is your sons hyperparathiriodisum primary? and does he have some of the symptoms you have?

Anna

[morgan617]

Anna, my son has juvenile onset arthritis, a genetic kind called spondyloarthropathy, or ankylosing spondylitis. It has an inflammatory bowel component. Plus other marvelous things. He's been sick since he was 11. he's 25.

Anyway, he was having a lot of gut pain and couldn't get his bowels under control. His GI doc just incidently ran labs on him because of his fatigue levels. His thyroid test came back okay, but his PTH or parathyroid hormone came back very high. His calcium was high normal.

This was discovered about 4 years ago and no one, not one person, including his endocrinologist has investigated to see whether it's primary or secondary. His Gastro insists it's not malabsorption and the endo says it must be. I actually brought up MEN to her and she said it wasn't neccessary to check for anything like that, as long as his calcium levels weren't too high. I am as frustrated over his care as I am mine.

He is on calcitriol. She has said it's primary and she has said it's secondary. No ultasounds or anything have been done and he sees her ONCE A YEAR. His rheumy believes he has a tumor, but won't step on the endo's toes...I hate that. You know, just let people die as opposed to giving them decent care, as you may offend a peer. Besides, he has been out due to a liver transplant he received and Jake now sees a nurse practitioner as the other doctors in the practice refuse to see his patients. This is what we deal with here.

I have thought about MEN and researched it. Since it's not clear anyone else has had it (we do not know very many medical histories of family members) she won't even consider it. Although not one person we can find has a history of his genetic arthritis either.

I have been there with everything, becoming quite the researcher, as we seem to have gotten every lazy incompetent doctor in the USA here......oh, sorry. he does have a tendency for tachycardia, he is very pale, and has a very low threshold for activity. he is not a fainter, but anytime I have done orthostatics on him, he drops significantly. I worry he is going to develop full blown symptoms however.....

[Canadagirl]

Anna, my son has juvenile onset arthritis, a genetic kind called spondyloarthropathy, or ankylosing spondylitis. It has an inflammatory bowel component. Plus other marvelous things. He's been sick since he was 11. he's 25.

Anyway, he was having a lot of gut pain and couldn't get his bowels under control. His GI doc just incidently ran labs on him because of his fatigue levels. His thyroid test came back okay, but his PTH or parathyroid hormone came back very high. His calcium was high normal.

This was discovered about 4 years ago and no one, not one person, including his endocrinologist has investigated to see whether it's primary or secondary. His Gastro insists it's not malabsorption and the endo says it must be. I actually brought up MEN to her and she said it wasn't neccessary to check for anything like that, as long as his calcium levels weren't too high. I am as frustrated over his care as I am mine.

He is on calcitriol. She has said it's primary and she has said it's secondary. No ultasounds or anything have been done and he sees her ONCE A YEAR. His rheumy believes he has a tumor, but won't step on the endo's toes...I hate that. You know, just let people die as opposed to giving them decent care, as you may offend a peer. Besides, he has been out due to a liver transplant he received and Jake now sees a nurse practitioner as the other doctors in the practice refuse to see his patients. This is what we deal with here.

I have thought about MEN and researched it. Since it's not clear anyone else has had it (we do not know very many medical histories of family members) she won't even consider it. Although not one person we can find has a history of his genetic arthritis either.

I have been there with everything, becoming quite the researcher, as we seem to have gotten every lazy incompetent doctor in the USA here......oh, sorry. he does have a tendency for tachycardia, he is very pale, and has a very low threshold for activity. he is not a fainter, but anytime I have done orthostatics on him, he drops significantly. I worry he is going to develop full blown symptoms however.....

Have you ever talked to Dr Norman about your son's parathyroid?

http://www.parathyroid.com

I had my parathyroid surgery done with him two years ago. Dr's here said my calcium wasn't high enough but I learned that doesn't mean anything and can still cause symptoms. Dr Norman is excellent and will take emails before you ever even get a referral. I was tested for MEN1 but the endo said I didnt' have it. Not sure exactly what tests she did to know this. It's interesting, the other girl I know with autonomic dysfunction also had her parathyroid out around the same time I did.

The people on the parathyroid list also have lots of strange symptoms just like us over here!

[P SUDIK]

Morgan,I am sending you good thoughts and BIG HUGS Love P

[anna]

Hi Morgan,

Sorry I did not get back to you sooner. 2 of my kids had their HUT test today and we had to stop over to get to appointment on time.

Anyway back to the subject in question, I think you should continue with the Endo., as you have looked into MEN you probably know better than your Endo. whether this condition would be worth looking into. I remember reading that some people with MEN do not know they have this until an other family member is found to have it and they are tested! Would you be able to see a genetisist they might be of help here.

Take care

Anna