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!!!!!   

I was told by my GP that everyone gets itchy ear canals !!!! and to use almond/olive oil to relieve it as it's like dandruff !!!!
Not sure what to make of that but I do get really itchy ear canals. I also get water stuck after swimming, it's a nightmare I can be half deaf for days.
Hope you get some relief Audrey, it sounds like you are having a horrible time.
It's must have been lovely to have that time with your Son, nice to be needed and I'm glad he is feeling better.
Lots of love Amanda xxxx

Yep, I think you might be right, Tigerlily.   I think everything must be compact inside my head, and I don't think that is good for much of anything!    

The recipe for the ear drops is 4 parts alcohol to 1 part white vinegar.  As I mentioned, it is great for removing water from inside the ear.   Wow, this is pretty cool!   Our favorite ear drops are now all the way across the pond!   Unfortunately, the drops are not helping my bad ear.   I wasn't sure if they would since there is no fluid in my ear.   I was just hoping they would have magical powers and end my problem too.    I awoke at 3:30 this morning with terrible pain in that ear, in the side of my face, and in my neck.   I still can't hear out of that ear.    I will be going to see a doctor today.    There is definitely fluid built up in the front of my ear, on the side of my face, but not in the canal.    Why do I have to be so freakin' weird?     I'm guessing because of the underactive thyroid and the low aldosterone level, my immune system is just shot to heck at the moment.    It is very strange how both ears are being affected.    The left one still hurts just a bit, but the right one is HORRIBLE!    I don't think I can get to a doctor fast enough!

I don't know, Amanda, I would agree that everybody might get itchy ear canals, but I don't think it's normal to have them itching so intensely for 4 years nonstop, and it is very strange that this happened at the exact same time all of my other symptoms started. I could be wrong, but I don't think this is normal. Thank you for the suggestion for a solution to the problem. I will have to try that.

Yes, I did really enjoy spending time with my son. He sounded great yesterday on the phone. He's not 100% yet but definitely improving. I do hope that continues. Thank you for thinking of him.

Audrey

I agree Audrey I think there's definitely something going on, I think my GP just dismisses everything as "everyone gets that" instead of looking at how many of these symptoms one person has, which just might add up to a whole different problem.
Love Amanda xxxx

I hope the doctor can come up with something that will help, Audrey, or you're going to have a very irritable weekend. And you're not weird, you are unique   

It's great to hear that your son is feeling better; I'll bet it helped him that you were able to spend time with him. 

Love and hugs 
Brigitte xx

Yep, you're absolutely correct, Amanda! Like when the ER doctor glance at my partially visible, badly swollen feet (and didn't even look at my pitting lower legs, thighs, arms, an entire body) and said, "Well, it's summertime. Everybody puffs a bit in the summer." Or when I told my endo that my eyelids twitched nonstop for 6 months straight before they let up at all, and then they would twitch for 5 or 6 more months straight, and that sometimes all 4 lids would twitch at once, and she said, "Well, sometimes when I'm really stressed, my eyelids will twitch. That's normal." I asked her if they twitched nonstop for 6 months when that happened. She didn't really answer that question. Did she really think that after living for 60 years I did not know it was normal for eyelids to twitch once in a while? Did she really think I would be reporting this to her if it was just normal eyelid twitching? Did she think I was too stupid to know the difference? So frustrating!!

Ok, I've got to get ready now to go get some help with this ear. I wonder if they'll tell me it's normal to have the ear and face all swollen, have pain in the neck below the ear, have horrible pain inside the ear and on the side of the face, and that it's normal to have the inside so swollen you can't hear! Surely not.

Audrey

Thanks, Brigitte. It sounds much better to be unique!   

Audrey

I managed to grab an 11:20 appointment this morning with my PA. I called the ENT docs office first. The message said the office wasn't presently open; call back during regular business hours, but it didn't give those hours. I was not about to sit around and wait til who knows when, so I called and booked an appointment with my PA. I may still have to see the ENT doctor in the future for this issues, but, hopefully, my PA will know what this is and know how to treat it to stop the pain and help me regain my hearing.

The entire side of my face is now hurting. My jaw is very stiff also. Be nice to get this taken care of. I'm wondering if this might be a parotid gland issue or, as I mentioned earlier, a sinus problem. I am willing to bet it has something to do with the fact that my entire body is so full of water. It seems I swell more than usual for everything. I've been this way for a couple of years. I think I mentioned at one time on here that I noticed when I would get mosquito bites, they no longer swelled to the size of a quarter, but the size of a baseball. My family noticed this about me too. I guess it was hard not to.    I did read that that was normal for someone with low aldosterone. From scratching inside of my ears so often because of the constant itching, I sometimes make them sore. I'm wondering if maybe I just really irritated them, causing them to both swell like this. The left one feels almost normal now, but the right one seems to keep worsening. Looking forward to getting rid of this pain and hearing again!!

Audrey

Well, it was a very painful, eventful day.    My PA, Lisa, looked at the swelling in my face and neck and looked inside my ear and asked me how the heck I've been dealing with so much pain.   I told her it didn't get this bad until the middle of the night last night.  That was when I knew I needed help, and that it wasn't going away on its own.    

She said my ear was severely infected, probably from scratching my ear canals to much because of the never-ending itching that's been going on for the past several years.  I do make both canals sore from scratching all the time, because I just can't stand to itch! I think this infection might not have happened if my immune system was not so suppressed by the underactive thyroid and low aldosterone.    Lisa told me I needed a wick placed in my ear, because the canal was completely closed up from the inflammation, and there was no other way any drops would reach the inside of my ear.  

She told me they didn't place wicks at their office, and that I needed to call my ENT doctor before I left her office to make sure she could see me immediately.   She said if she was not able to, I needed to get right to the ER at the hospital and get that wick inserted.    She and the woman at the front desk both started searching for my ENT doc's number for me, because I didn't have it with me.   When they found it, Lisa wrote it down for me and told me to hurry and call.   I went out to my car and called.

My ENT doc was not in today.        So I had to go to the ER AGAIN!!!    My goodness!    The pain was getting worse and worse as the minutes went buy.    I was afraid I was going to get a speeding ticket while driving to the ER!   I just couldn't seem to get there fast enough.  

The ER doctor looked at me ear, then looked at the papers Lisa had given me in her office.   He said, "Well, she prescribed a very good antibiotic and some very good ear drops, but there's 1 more thing we need to do.  We need to insert a wick."    I had mentioned the wick to the nurse before the doctor came into the room, but I hadn't had a chance to mention it to him yet.    He said, "We also need to get you something for the pain."   I said, "THANK GOD!!!"    He prescribed Vicodin.  

Again, I was keeping an eye out for any cops on the side of the road, because I was FLYING to the pharmacy!   When the girl told me it would take about 20 minutes to fill my scripts, I was very disappointed and had no idea how I was going to wait that long for some relief.   Then, of course, I'd have to drive home yet before I could take a pill!

I managed to get home without being stopped, and before I did ANYTHING, I popped a Vicodin!!   I hadn't eaten since 7:00 this morning.   It was 3:00 when I took the pain meds.    I knew I shouldn't take it on an empty stomach, but I was in so much pain, I couldn't even think of food!    Twenty minutes after I took that pill, the pain was decreased to a point that I started feeling hungry.   I never dreamed it would work that quickly!  

I ate something very small and then hit the couch, and I haven't been up since.   I kept dozing off.

Lisa called about half an hour ago to check on me.   She is the sweetest thing!!   She said she was wondering how I made out with my treatment, and she was wondering if I was getting any  relief yet.  She told me this was really bad.  I told her Vicodin is good food, and I'm doing ok.  I'm not supposed to take more til 9:00; it's only 7:30, and this is getting pretty darned painful again.   I might just take it at 8:30 if I can wait that long.  

Lisa was so cute today!   I was wondering if she was going to say anything about my aldosterone being low, since when I asked her to order that test, she told me she really didn't think anything was wrong with my adrenal glands, but that she would order the tests for me that I requested.   Then it turned out that there WAS something wrong with my adrenal hormones.   I am very thankful that she agreed to order those tests, along with others I have requested, and if she wasn't such a sweet, caring person, I just might have brought that all up, but I didn't feel the need to with her.     Before I left she said, "Well, darn it, I can't seem to diagnose you correctly with anything, and I finally do diagnose you, and I can't help you!"    We both laughed, even though I was unable to muster a very hearty laugh, and I told her I was just very grateful she has continued to try to help me over the years.    Then she said, "Well, between the 2 of us, maybe we'll get you figured out eventually."   I just love this girl!      I am so happy that I met her 7 years ago.   It was totally by accident.   The doctor I had been seeing left the practice, and she took his place.   Funny how things turn out, isn't it?

Well, I'm sorry if this is a little long-winded.   I seem to talk way too much.  If I was trying to actually speak all of this today, I would not be able to.  It is very painful to talk.   My mouth just doesn't want to move.     Oh, Vicodin, where are you?

Time to rest.  

Audrey

I'm glad you have got the right treatment for your painful ear, I hope it clears up really quickly. You sound like you have had a very traumatic few days.
It's good your DR has realised that yours is a very complicated case and she is determined to get you diagnosed.
Get lots of rest and look after yourself until your ear is fully healed and then you will be well enough to resume your fight to get to the bottom of your problems.
Love Amanda xxxx

What a trial you've been through Audrey. I'm so pleased that you've got the treatment you need to clear up the infection and get on top of the pain. Hopefully, you can have a quiet and restful weekend whilst your body starts recovering from all the trauma.

It was nice of your Doctor to check up on you and it shows how caring she is. Even if she doesn't get it right every time, the fact that she cares is lovely and obviously makes you feel happy. She's only human and humans are fallible! And she has Dr Aud to nudge her in the right direction too. 

Get well soon; sending lots of cyber hugs and love
Brigitte xxx

Thanks, Amanda and Brigitte. Yes, it's been rough period in my life, but I do know better days are ahead, just like they are for all of you too!

I still think if I didn't have the poorly treated thyroid and and the low renin and aldosterone, and I wasn't so full of water and didn't swell abnormally for everything now, this ear problem would not be nearly as bad. Everything really swelled up quickly and very badly, and I think it's because of my other health issues.

I had a decent night, which really surprised me. I slept for a couple of hours and woke up at 2:00. That's when I was due to take another pain pill. Surprisingly, I didn't feel like I needed it yet! I was able to wait another hour before taking it. Unfortunately, when I awoke again at 5:00, the pain was awful again, and it had only been 2 hours since I took a pill!    I was worrying that maybe the pills weren't going to continue working for me. I took another pill at 8:30, and within 20 minutes, I had GREAT relief!

The swelling and pain were such this morning that my jaw was not working. I couldn't get my mouth open to eat breakfast. I finally got a spoon of oats and berries in my mouth, but I couldn't chew. So I took a Vicodin, waited 15 minutes, and then I was able to eat with no problem. I sure can understand how people get hooked on pain pills! I even felt good enough to go out and clean the pond filter and water all of my plants. Yesterday I would not have been able to do this. So things are looking up!!

I still can't hear. My ear is still swollen shut, but, again, that is probably to be expected with the underactive thyroid, low renin level, and low aldosterone level. Hopefully, soon, this will ALL be taken care of!!

I am really feeling tired again now, but I also wanted to get some laundry done and go out and vacuum the pool. Not sure if I'll get everything done, but I'm going to try. I might have to wait til I take another pain pill, but I will probably be able to do this.

It's a good day!! Well, it's a BETTER day, and that makes it a GOOD one!!

Audrey

Well, I just had a very nice message typed here, hit "Send," and it totally disappeared! I know this can happen occasionally, so I have gotten in the habit of saving the message before I attempt to send it. This time I got careless and didn't do that. So here I go again.  

I am back from my ENT appointment. I guess it went ok. At least I didn't have to have my eardrum lanced. That was really worrying me! 

The doctor said both of my canals are extremely angry and raw from me scratching constantly for the past 4 years. I told her if they hadn't been itching nonstop for the past 4 years, I wouldn't have had to scratch them so much. I asked her if I could please have something to stop the itch. She said she would give me some anti-itch drops, but she didn't give me the prescription today. I guess she wants the canals to heal first. I couldn't have used them in the right ear anyway, because it now has a new wick inserted.

She looked at my left ear and told me there was a little piece of wax way down deep. She asked me if I've been using Q-tips to scratch my ears. I told her since she yelled at me last year for doing that, I didn't touch them for about 5 months, but about 2 months ago, I couldn't stand it anymore, and I did use them, but just once. She then picked that wax out of my ear for me. And I can tell you that when she had those instruments in there to do this, it was HEAVEN!! I thanked her for scratching my canal for me. She laughed and told me she didn't want to make a habit of this.

Then she looked at the right ear. She told me it was still pretty badly infected, and that the ER doctor didn't insert the wick correctly, because it should not have just fallen out by itself. She forced open the canal, and I was very surprised this did not hurt. She said there was some wax deep down in that ear too. She said this might be happening when I use my fingers to scratch. I might be pushing it down in there. She said she suspects when I flipped backward off that stack of inner tubes out in the pool a couple of weeks ago, water probably became trapped in my ear behind the wax, and caused the infection. Geez, this is really gross, isn't it?!!! She once again forced open the canal, put some drops in, and then vacuumed out the canal. This was a very pleasant experience. NOT!!! Once she got the canal all cleaned out, she inserted the new wick and added a few drops of antibiotic. I have to go back to see her on Friday to have the wick removed.

I do miss my hearing, but I am so happy that most of the pain is gone, I guess I can deal with this inconvenience a bit longer. I have only taken 1/2 of a Vicodin tablet since 1:00 a.m. It is now 5:15 p.m. I was taking 1 every 5 or 6 hours for the past few days. Life is good!   

Audrey

Good news that you're sorted out for now, Audrey and that you have to go back on Friday too so that she can keep an eye on her treatment. In the meantime, it should continue to heal and you should continue to feel better   

So good to hear you're feeling that life is good. But if you can't hear any of us, just mention it and we'll SHOUT in capital letters     

Love and Hugs
Brigitte xxxx

PS Don't scratch  

Audrey my gosh, when it rains it pours. Sorry to hear about your ear, they can be so painful. I had to have my back tooth extracted today to much bone loss and it was killing me. Hope you get well soon.      Kathi

Yikes, Kathi, sorry to hear about the tooth. That's not much fun either! Ouch! Glad you got it taken care of. Sorry you're losing your teeth, though, and especially this way. How sad. This stupid disease!!

And, yes, this ear infection was horribly painful. Thank goodness the pain has subsided a great deal. It's not too bad now. I just can't hear, which is very annoying, but if I had a choice, I'd take this over the pain. My neck is still a little swollen, but my face looks almost normal now. At least I can open my mouth to eat without needed pain meds first. Geez, I'm happy that's past!

Audrey

I can hear! I can hear!!    The hearing doesn't seem just right yet in my right ear. That is the one that was badly infected. But the ENT doc pulled the second wick out this morning, and I can once again hear! It's been 9 days since I heard anything out of that ear. Woooo hoooo!!!!!

Audrey

Yay, great news! I expect it will take a while before that ear gets up and running again but it's on the way which must be a relief. You'll be a new woman before you know it Audrey!!!

Love
Brigitte xx

Well done Audrey I'm so pleased you can hear again, it's awful having that problem even if it's not perfect it soon will be, as will the rest of you, keep up the good work.
Love Amanda xxxx

Keep on ticking all your problems off the list, Audrey!

So pleased for you - Love from Tigerlily xxxx

Thanks, ladies. Yes, it is a good day so far for me. I just went outside to clean the filter in the pond, and what a joy to be able to hear the waterfall again!! When I kneel down to take the filter out of the pond, the waterfall is to the right of me. My right ear is the bad one. The first time I went out to clean the filter after my ear went bad, I thought something was wrong with the pump because I couldn't hear the waterfall! I figured now instead of just cleaning the filter, I'd have to be trying to figure out what the heck was wrong with the darned pump! Then I glance over at the waterfall and saw that the water was coming down just fine! What a bad feeling. A much better feeling today, as I actually heard that water coming down!!

I was a bit concerned because the sound is still a bit muffled in that ear. I just called the doctor's office. The woman assured me that this is normal, because it is still a little swollen and still healing. I sort of figured that, but I wanted to hear it from them. I feel much better now. I guess that infection was just so darned painful, I am afraid it will happen again. It was 9 days ago that the pain started. My face is still sore in front of that ear, and I still get little sharp pains down inside of the ear. They're not bad, and they don't last, but I am very aware it is not over yet. Wow, what an experience! So glad that major pain is GONE!!!!

Audrey