Looks like I outsmarted all of my doctors AGAIN!!!!!

First topic message reminder :

Well, my latest aldosterone level was just posted on the hospital's patient portal a few minutes ago. If you recall when it was tested on July 11th, it was found to be 4. Normal is 4-28 at the lab where the test was run. When I learned that diuretics can raise cortisol and aldosterone levels, and I had been taking diuretics for 2 weeks, stopping only 4 days prior to this blood draw, I requested that these tests be reordered. My PA agreed to this. My new level came back at <1!!!!!! It looks like I have indeed diagnosed myself for the second time in 3-2/3 years!! I cannot describe how happy and how excited I am right now!!!! I can't decide if I want to call my doctors or wait for them to call me. I just want to hear them say I was right AGAIN. Actually, since none of them have ever acknowledged the fact that I was right all along with the hyperparathyroidism, I don't expect them to admit I was right this time either.

At my last appointment with my PA, she said, "I really don't think it's your adrenals causing this. There really is no reason that your adrenals would be having trouble." God bless her. I do love her, but I still don't know why she assumed my adrenals were in good shape, and there was no reason for them to be malfunctioning, when I have soooooooo many symptoms! I am wondering just how long I have been dealing with this! As I look back now, I can remember feeling some of the symptoms for at least 30 years! That was when I first started having trouble with edema. I saw probably 20 doctors over the years for this problem, and none of them could ever figure out what was causing it. I can't believe NONE of them thought to test my adrenal function! I can't believe nobody ever thought to test my aldosterone, since it is the hormone that regulates our fluid balance and our blood pressure!

You all need to know that no matter what health issues you face, you can learn just like the doctors can learn! All you have to do is look for the answers. They are right there for us all to discover! If your doctor can't figure you out, hit the internet, and don't ever let them tell you to stay off of the internet! My doctors told me that more than once. I never listened to them. Had I stayed off of the internet, I would still have 2 parathyroid tumors in my neck, and I would probably never have been diagnosed with aldosterone insufficiency, and who knows how long I would have had to suffer with all of this $#!+!

Onward soldiers!!!!! There are battles to be won!!!

I would just sign this "Audrey," but tonight I am very proud to sign off as Dr. Aud!!! Hallelujah!!!!!   

What a relief Audrey! I was really worried about you and am relieved that you've got checked out at the hospital. I've done my best dance up the garden for you on my way back from feeding the birds: they were making a right noise in the trees, so either they were just impatient or thought my 'ow,  my heels hurt' dance was hilarious

It's fantastic news that there are some pretty important parts of your body which are functioning perfectly normally! What a relief that must be I'm hoping that you can make a nephrologist appointment as soon as possible so they can find out exactly what's happening to you. 

A lovely image of you peeing into a cup! They did make sure it was awkward for you, didn't they?! 

Must dash off and take my daughter to her pony so she can ride her to the forge for (expensive) new shoes. I just had to come on here first and tell you how relieved I am that you've been checked out and are ok

Lots of love and hugs 
Brigitte xx

Hi Audrey
Brilliant news your important bits are all fabulous. It is ridiculous what you get told to do by doctors who have no concept of the problem you have good job you know so much.
Oh no trying to pee in a cup and juggle everything else sounds hilarious   
Hope you get the appointment with the nephrologist very soon and hope they have some understanding of Adrenal problems !! You'd think that wasn't too much to ask.
Lots of love and hugs so glad you are back home.
Amanda xxxx

Great news, glad to hear you are ok Audrey, hopefully you will get this sorted very soon.

Take care

Nelly

So glad to hear you've been checked out and the kidneys are working well, Audrey.
OMG we were all so worried about you! As you say, though, it might be your body doing its usual "non-usual" thing.

If you need to take in some salt in the meantime, why not try a cup of hot Vegemite (veggie type of Bovril/marmite, I believe). This is naturally quite salty and a warm drink is often good in the hot weather. I just recall you said that when you had some salty foods last time your edema improved somewhat.

So glad too that your husband was able to drive you to the hospital and you didn't have to drive yourself in that condition.

Have a restful weekend - Love and Cats from Tigerlily          xxxx

Audrey, phew! What a relief! If you only knew how worried I was about you, especially as I can't always get a Wifi connection in this Greek paradise to check out the forum for news! I had a giggle too about your pee in a cup anecdote, I could just picture the scene, and your story too Meggy about having to use a foil tray - been there, done that but with a large, plastic Chinese takeaway container, pre-washed of course - can you imagine the panic in the lab when confronted with a sample containing mega amounts of monosodium glutamate masquerading as sodium....?! They'd be sending an ambulance ....

Audrey, I know you're still feeling rubbish but it's a relief to know that your major organs are working well, but I do hope you were paying extra attention to that very patronising doctor when he was explaining to you how to measure your BP! It's very complicated getting your little blonde head round those silly numbers, one at the top and one at the bottom, so don't you worry yourself about it, way too complicated for you, so be a good girl, trust your doctors to know what they're doing (  ) and just rest your little puffy summer feet, legs, hands, face etc etc ... oh and when you get time, pop yourself out to see a nephrologist to find out what the heck made you feel ill enough to go to the ER in the first place!!!!!!!!

Love and hugs Dr Aud, take good care of yourself 

Jasmine x

Jasmine love your comments about the idiot DR. I can image the look on Audrey's face as he said it      Didn't he know she is DR Aud !!!!!
I hope you are having a wonderful time on your hols and getting lots of rest.
Love Amanda xxxx

You are all hilarious!!

Yes, now that I look back on this, it actually seems funny, but it wasn't last night. At one point, I know my husband was afraid I was going to jump up off of that bed and hurt that stupid doctor!!! When he made that comment about the blood pressure reading having 2 different numbers, I think my husband was ready to get up off of his chair to hold me back!! In my younger days, I may have just sat there and taken that from someone. I don't anymore. There is no reason for anyone to just assume another person is stupid!

I am going to post pictures of my "normal summer feet" on here for you all to see. I still can't believe ANY medical professional would have looked at these and said this was normal for this time of year. I do not think I am the stupid one here! Actually, he didn't even really look at them. I had my flip-flops on, and my pants were long, which covered part of my feet. You couldn't really see much of my feet, and he never even attempted to look at them.

I don't think I mentioned in my previous post that they did not tests my aldosterone and renin levels last night, which is why everything they tested was normal. Those 2 tests would have had to be sent to another lab, and it would have taken days for those results to be revealed. It wouldn't have made much sense to do that in the ER. I might ask my PA to reorder those tests in a couple of weeks, or I just might wait until I see a nephrologist.

Oh, yes, it was a very entertaining night! As I was juggling with that plastic cup, my bulky hospital gown, all of those wires, and my quickly falling pants, I was wondering if they possibly had a camera in that ER bathroom! I mean, there are some very sick people there! What if they lock the door and then pass out or something? How funny I must have looked in there!! I was so afraid the wires or the gown would fall out of my left arm, while I was trying to pull the gown back far enough so I could actually see where I was peeing, and I would pee all over them!! And to see my pants lying on the floor right in front of the toilet in a ER bathroom where you know some VERY sick people have been. YUK! I had to keep from laughing when I handed the nurse that tiny little cup, even though I was a bit ticked off by the whole experience. I still don't know why they expect women to use those tiny things! I'd like to meet the person who decided that was a good idea. I think they need to face Dr. Aud also!!    I think being so sick for so long has made me a force to be reckoned with! I can't deal with anything anymore! I am still very soft-hearted, very sympathetic and compassionate, but I can't deal with stupidity anymore, and I can't deal with people who treat me like I'm an idiot, when they obviously are no brighter than I am! And would it be so hard to just give us a little larger cup?! I love the baking pan idea!! When I had to do the 24-hour urine tests here at home, I used a large, plastic yogurt container. It worked GREAT! Guys don't know how nice they have it!!

Audrey

 Well if there was a camera, I bet the operator had a laugh! It's probably a good job you didn't give the doctor a whack on this occasion He didn't know you were an experienced Dr planning on setting your own clinic some time soon! I think hospitals the world over should rethink the peeing cup; perhaps we should start a campaign or petition! 

It's lovely to hear you're a force to be reckoned with, though I don't think any of us here ever doubted it for a moment!! That, and your sense of humour will get you through anything

I'm so glad you went to ER for your peace of mind because you know where you are and what to do next. Have a fantastic weekend and take care of your ankles etc! 

Love and hugs 
Brigitte xx

Yes, it must have looked hilarious, Brigitte!

I am very happy I did go over to the hospital last night. Just knowing my kidneys aren't failing was a huge relief. I am concerned, though, that if I am unable to get to a nephrologist soon, that might change. I sure hope not.

I just went out to water my plants and flowers, and I was reminded of just how weak I still am. I was so excited last night, I somehow forgot that nothing has really changed as far as my condition. Still very relieved and happy though.

The weakness really gets to me when I'm trying to do something. I think it's because when something doesn't go very smoothly, it's too much of an effort to correct the problem. The hose got caught up on the picnic table when I was watering my flowers before, and it was a huge effort just to walk over and get it loose. Isn't that awful?! Hopefully, it won't be much longer til this is all gone.

I know you all are suffering terribly yourselves. I am not thinking I have it any worse than anyone else. Just sharing my experience.

I am going to go out to the pool now and try to swim a few laps. The water always seems to help my edema, and my weakened muscles move much more freely in water. I haven't had time to get out there for close to a week because of all that has been going on around here. I hope the water temperature is warm enough, because if it isn't, I won't get in. It is heated, but the last few nights have been rather cool, and I didn't cover it, so I'm not sure what I'm going to find out there. I may need to get the SCUBA gear out!   

I hope you're all having a nice weekend!

Audrey

Hi Audrey
You need to take it easy. I know what you mean about the hose, just winding it back on to the reel is exhausting, it's so frustrating. Have a lovely weekend hope you get to swim.
Lots of love Amanda xxxx

Yes, enjoy yourself, Audrey.

You could always buy yourself a wet suit to be able to swim when the water isn't so warm!

Lots of Love, Tigerlily xxxx

I am glad you had a good laugh about it. and your feeling better. I know you will get copies of your labs from the hospital they maybe useful. Wow a heated pool, mine is not heated but where I live it is not necessary . Would be nice in the winter. Crank up the heat and jump in.whohoo

Thank you all again for your kind words and support. So very much appreciated!

Yes, I think a wet suit would be very nice, Tigerlily! I'll have to look into that.    Actually, that might be fun!

I'm not sure if I could swim in an unheated pool now that I'm used to warm water. My Mom and step dad had a pool for over 30 years. It was heated too. I guess I'm spoiled. After they closed their pool, I told my husband I had to have one. I LOVE to swim. Last summer when my feet were so painful I couldn't walk at all, the swimming really felt nice! I could get a bit of exercise that way. My neighbor told me I should just get a hot tub. I would love to have one of those two, but I needed a pool because you can't exercise in a hot tub. Well, I guess there is a type of exercise you could do in a hot tub, but I like to swim. Well, THAT would be nice too.   

Audrey

Well, it looks like I will be seeing a nephrologist much sooner than Sept. 9th, which was when they told me was the soonest they could see me, when I called on Friday.   The woman said today that since I'm having so much trouble, they will fit me in much sooner.    I have an appointment for Aug. 4th!     That's only a week away!    I am so happy!!

The woman wanted me to call my PA and have them fax my latest office notes to their office.    I took care of that.   I now need to call my endo to let them know what is going on and see if they want to send any notes to the nephrologist.  

I did want to mention that since I posted regarding my aldosterone and renin problem, I have learned quite a bit about this!     I learned that there are MANY other people who have had parathyroid surgery and then developed issues with their aldosterone and renin levels!   I continued researching, and I learned why.    We all know that high blood pressure is a symptom of hyperparathyroidism.  I never knew exactly why that was.  Well, it seems that elevated PTH causes elevated renin, which constricts the blood vessels, causing high blood pressure!    When the parathyroid tumor or tumors are removed, the PTH decreases, causing the renin to decrease, thus the lowering of the blood pressure.     For some reason, I guess my renin has just fallen too low.   Oh, and renin triggers the release of aldosterone.    Probably why my aldosterone is also very low.    My body is just having trouble revving up its engine again after being so sick for so long.     It makes me very angry to think that maybe if I would have been diagnosed 3 years sooner when I first told my doctors I had HPT, I may not be having such a rough time with the recovery!!    

Things are looking a bit brighter!!!

Audrey

So glad you are to be seen earlier - Audrey - much earlier!

Yes, it sounds as though you are not yet firing on all cylinders since having the pHPT adenoma removed.
When you get really better, Audrey, I think you could be highly dangerous!! You'll have more energy than the rest of us put together!

That's very interesting about the aldosterone/renin/blood pressure link. Thanks for posting about that. It's something for us all to bear in mind when recovering.

Hope you've been able to swim a bit today and that you feel a bit better now that you will be seen sooner.

Love from Tigerlily xxxx

Dear Dr Aud,

Really pleased to hear that they've managed to get you an earlier slot with the nephrologist and I hope they continue to give you a speedy service so you can get back on track with your health sooner rather than later!

Yes the renin/aldosterone stuff is really helpful. I'm very interested in your findings, especially your mention of insect bites. Since my HPT symptoms started I have had a massive reaction to bites - huge swelling and extreme itchiness. The last one I had on my leg looked like a second knee!  I don't think I've ever mentioned this to the doctors - too busy with all the other stuff - but now I'm thinking it could be linked. Do you have any more info about this or where I can look for more details?

I'm sure you once mentioned about being vegetarian. Is this right? I've been veggie all my life and I have a theory that since animal protein greatly affects phosphorus and calcium excretion being a non-meat eater means your 'normal' blood levels are not the same as the population 'normal' and therefore make it harder to get diagnosed. Interested in your thoughts on this too? 

Hope this week goes quickly and you get a switched on nephrologist. No more goats and monkeys   ,

Lots of love
Dee
xxx

Hi Audrey
Really pleased you have got appointment with nephrologist next week, seeing a new person with a totally different view on the situation will be good, let's hope they can finally get you back to health.
Love Amanda xxxx

Hi Audrey

What good news for you    I'm so pleased that your nephrologist appointment is sooner rather than later and that you haven't got long to wait for it. It's good to know things are in motion and actually happening.

You are a mine of information! I never knew that about blood pressure. Mine has always been normal -it's about the only thing that is. How high was your blood pressure when you had HPT?

Dee, I find it interesting about your reaction to insect bites since I've always had bad reactions until this year. I tend to get bitten a lot by horse flies when at the field with my daughter's pony. This year, I get bitten, but it just seems to stay a little red lump which barely even itches. I had drawn the conclusion that horse fly bites are stopped dead by too much calcium running around the blood!

Love
Brigitte xx

Thank you, ladies.  I am very happy to have that appointment scheduled.

Yes, Tigerlily, you should all keep this in mind, so you might not need to struggle for months before you can get someone to listen and help.    I am happy to share it with you all.    It's bad enough suffering myself, but knowing people I care about are suffering is much worse.

No, no swimming today.   We're having some very strange weather here.  This should be the hottest time of the year here, but the high temperature today is 70, and tomorrow it will be 66!!!   It should be around 90!   It has been raining all day too.   Not that I would let the cool temperatures or the rain keep me out of the pool.   I have swum on many a rainy, cool days, but my husband put the cover on the pool, and my arms are so weak now, it is a bother to get it off, so I'm opting to stay in today.    I had a lot of phone calls to make, and I decided to cook and do some other little things around the house, and that includes talking to all of you.    

Dee, if you're having trouble with swelling, you might want to keep that aldosterone in mind!   I am very anxious to see how my body will react to insect bites, etc. after my aldosterone level is normalized again.    

And I never actually thought about blood differences being a vegetarian, but that makes a lot of sense.   I will have to research that now.    You could be onto something here.   I always thought that maybe my body was just very sensitive, so it showed signs of illness when there was anything even slightly low or high in my system, even before it was flagged.    That sure seems to have been the case with just about everything that has happened to me, but I will definitely look into your suggestion.   Thanks for mentioning that.

Amanda, I do hope you are right, and this new doctor proves to be just what I need to get back on my feet!    I seriously wonder if my body just needs more time to heal, and it might eventually heal on its own, but I am so tired of being sick, I am more than ready at this time to seek some help.

Brigitte, my blood pressure was never really high when I had HPT.   It was higher than it had been for most of my life, but I assumed that was because I was aging.   Now I'm wondering if it was higher due to the HPT.    I mentioned earlier that my BP was always sky high at all of my doctor's appointments, but here at home before my surgery, it was always around 110/60 to 120/70 or so.    When I was younger, my BP was always around 100/60.   Once when I was in the hospital, it was 85/58.   I was probably 30 years old at that time.    So I guess when it was 120/70, that really was high for me.    I'm very anxious to see where it will be after the aldosterone and renin are normalized again.   For a few months now, it has been staying around 90 or 100 over 50 or 60.   As mentioned previously, it has been as low as 76/43, and just about every day the diastolic number will drop into the 40s at least once.    It is usually in the 50s.   And the systolic number will be in the 80s at least once during the day. I am very anxious to see where it will be when this is all over.

Audrey

Dee, I forgot to mention, if you just type in aldosterone and/or renin and then search, all kinds of good sites will pop up for you to check out.   Or search for adrenal issues or kidney function.   I will be researching a bit more.  As I find good links I will post them for you.  

And also, I pray you are right about this new doctor, and I will not have to add him to that list of goats and monkeys!    I've accumulated enough of those to start my own zoo!!   Don't need anymore!    

Audrey

Hi Audrey
 http://www.mayoclinic.org/diseases-conditions/addisons-disease/basics/causes/con-20021340ease

I posted this link I am sure you have seen it. Addison disease is something I thought of where you are concerned. I am glad you are seeing the doc sooner, know time like the present to get well.

Boy we could use some of your weather in California, it is hot here at 103 no rain in sight   Take care here's some flowers     

Thanks, Kathi. Yes, I have checked out this site, but thank you for posting anyway. I do appreciate all suggestions, links, and tips!

As a matter of fact, Addison's was my first choice of possibilities. That diagnosis was dismissed when my cortisol was tested and found to be normal. However, my serum cortisol was tested, and my urine cortisol was tested, and I have read many times that the only accurate way to test cortisol is with the 24-hour saliva cortisol test. I am not sure why they all it 24-hour, as you collect your saliva at 8:00 a.m., 12:00 p.m. 4:00 p.m., and 8:00 p.m., I think. I have read that many times serum cortisol and urine cortisol will test normal, but it may actually be found to be low with the saliva test. That 24-hour saliva cortisol test was the very first test I asked my PA to order for me. That was when I thought I did have Addison's. She refused to run that test, because she said when she received the results, she wouldn't have any idea what to do with them. I am unsure why she couldn't have consulted 1 of the doctors there at her practice if that was the case, but she didn't want to order it. I told her I would get on the internet and learn what to do with the results if she would just order the test. She would not. I called my endo's office and asked if they would order this test for me. The nurse said they don't order this test, but she gave me the site to go to order the kit. After collecting the saliva, I would need to send it off to a lab. They would send me the results. Then I would take that to my doctor. My insurance won't cover this, and it would be $120 out of pocket. So I decided to wait and see the results of the aldosterone and renin, hoping that would be enough to get me some help. However, even if the aldosterone and renin are low, without getting a true cortisol level, we may not be getting the whole picture here, and I still might have Addison's. I will discuss this with the nephrologist. Since I will be going to a big hospital in the city for this appointment, maybe he will order this test for me. My serum cortisol was 10.0. Normal is 6-23. So I'm wondering if the saliva cortisol might detect a problem. Again, my body seems to show the effects of levels being low/normal or high/normal; it doesn't seem to wait until the levels are actually flagged.

Thank you again for the suggestion and the link!

Audrey

I am sure this new doc will run his own labs and hopeful the saliva cortisol and get to the bottom of it. If I run across  anything else that maybe helpful I will post the link.

I just re read my post and I put know time like the present instead of NO time, It just makes me crazy when I do stuff like that. It has been happening more and more. ok my little rant is over.   Hugs to you

That is funny, Kathi. I too HATE when I use the wrong spelling of a word. It seemed for a while I was doing that very often! I kept screwing up there and their and hear and here, etc. I have NEVER done that before in my life! And it's not that I don't know the difference, I just simply use the wrong word. Strange! Actually, I didn't even notice that you did that. Obviously, we both have a problem!   

Yes, I'm hoping this new doc will know what he's talking about. I just read that low renin and low aldosterone could mean kidney damage, but that doctor at the hospital emergency room said my kidneys are functioning perfectly normally. I just don't know what to think. I hate when I read something like that! Maybe I should stop reading for now.   

Thanks for the hugs. Much appreciated and much needed.

Audrey

Well, I found some new information that I wanted to share with you all.

I started going through my post-surgery diary to make a list of events for my nephrology appointment next Monday. Ever since all of these new symptoms started to appear back in March, I've been trying to figure out what the heck is causing them. I've been praying it's not the D-mannose I started taking in March to prevent UTIs. That has been on my mind a lot. D-mannose is a sugar which is not supposed to be easily absorbed by the body, so it is not supposed to have any adverse effects, but, then again, this is MY body we're talking about here, and it NEVER does what it's supposed to or what's expected of it!

Today when I was going through my diary, I noticed something else I started taking in March. It was the blood pressure medication my PA had prescribed, Metoprolol. I mentioned previously that my blood pressure here at home was always around 100/60 to 110/70, but since it usually rises to around 185/92 at my doctors' appointments, my PA felt that I needed blood pressure medication. She prescribed the Metoprolol. I started taking it on March 17th. My diastolic blood pressure started dipping into the 40s on March 27th. I started twitching all over my body on April 1st. My muscles started feeling extremely weak on April 5th. On April 9th I started getting those strange sensations in my arms and legs like something was shorting out, and my limbs would jerk. On April 11th, I called my PA and told her my BP had been extremely low for quite a while. She thought it may have been from an increase in my thyroid medication. I would not have thought that, but Dr. Aud certainly does not know everything.    She prescribed a different BP medication. I picked it up at the pharmacy, but I never started taking it. I really didn't think I needed it. I was afraid my pressure was going to continue being too low, and I was feeling so awful by that time, I just couldn't take it.

I just got on the internet today to see exactly how Metoprolol helps to lower blood pressure. Learning what I just have recently about how renin and aldosterone control our blood pressure, I was anxious to know if Metoprolol has any effect on renin, which would in turn cause an effect on the aldosterone. Turns out, it DOES!! Metoprolol suppresses renin production in the kidneys, which lowers blood pressure! Wow, could Metoprolol be the cause of all of these new symptoms which have been making me sick for the past 4 months?! I have not taken the Metoprolol for a few months now, but could it have had such an effect on my kidneys that they no longer are able to produce the necessary amount of renin for my body to function normally?

I know that a lot of people suffer from low aldosterone and low renin levels after parathyroid surgery, and I thought that might be the cause of all of this, but could it be that I have been hit with a double whammy here? I plan on discussing all of this with my new nephrologist on Monday!

I just hope if my renin is low from being suppressed by Metoprolol, there is hope of getting it back up where it belongs. I don't know if that could be possible naturally in time or if I will need medication to achieve that or even if it is possible at all. My list for the new doctor is getting longer and longer. I do hope he can help me!

Audrey