Adrenal test results are in, and it looks like I may have diagnosed myself for a second time!

Well, as you can probably surmise from the title of this thread, it looks like I just might be right about my adrenals failing me, causing me some of, if not all of, my remaining symptoms, and I could not be more excited!!    

The adrenal tests that were ordered by my PA last week after I suggested them, have revealed my adrenal glands are taking a little snooze.   My aldosterone level was revealed to be 4.   There is no reference range on the hospital's website with this test, but I got on the Internet immediately and found reference ranges on 3 different sites.   Aldosterone levels very according to whether or not the person is lying down or sitting or standing.   I was sitting when my blood was drawn.   The normal levels I found on the Internet for sitting were 5-41, 4-31, and 7-30.    However you look at it, my level is rather low at 4.    My renin level was found to be 0.28.   Normal is 0.25-5.82.    My level isn't low, but very low/normal.      When I looked at these results, all I could think of was how I was not able to get an HPT diagnosis by 3 different doctors for 3 years because my calcium and PTH levels many times were in the normal range, and the doctors continued to dismiss me.     I was thinking, oh, crap, here we go again.   Another long, frustrating, painful, depressing battle ahead, but after being on the phone all day yesterday with my doctors' offices, it looks like they are on board early for this trip!!     I can't believe it!     I'm wondering if maybe after misdiagnosing me for 3 years for the HPT, they are paying a little more attention to me now!    I think they're realizing I just might know what I'm talking about!

A few months ago, I started thinking there must be more to all of my symptoms than just the HPT, since my serum calcium and my PTH levels now show that I have been cured.   I started researching all things that could be causing my remaining symptoms.   I stumbled upon adrenal issues.   From that time on I was in full research mode and determined to learn if this was what was wrong with my poor body!    I had a real hunch about this, just like I had a hunch about the HPT almost 4 years ago.     I mentioned it to my PA a couple of months ago.   She didn't think I could be having adrenal problems.   I mentioned it to my endo, and she too dismissed the idea.   I came home and researched some more.     A month later I asked my PA if we could run some adrenal function tests.    She told me again that she really didn't think I had an adrenal problem and dismissed me again.    

A couple of weeks ago, I was feeling so sick and weak and bloated, I made an appointment with my PA again.     Again, I brought up the adrenal issue.   This time I had a list of tests that I wanted her to order for me.    She said she really didn't see any reason that my adrenals would be having a problem.   I am not sure why she said that, as there really was no good reason for my thyroid to start having problems or for my parathyroid glands to develop into tumors either, but it did happen.   I didn't quite understand why I needed a good reason for my adrenals to be struggling.   Although, I actually have a few good reasons for that, and my PA knows me well enough to realize that these things could be affecting my adrenals.    Thirty-three years ago, I had that terrible allergic reaction to that wood stain that caused me to break out in hives, swell up all over my body, and suffer chronic joint pain that lasted for 28 years; and I've led a fairly stressful life, including the past 3 years and 9 months that I spent suffering and fighting for a diagnosis for the HPT.   Exposing the body to toxins and chemicals can put great stress on the adrenals, and very stressful situations can greatly affect the adrenals.    

I called my endo's office yesterday morning and told them that I had had enough.   They never answer their phones, so I left a message.   I told them I could not go on living like this anymore, and I was about to go over to the hospital emergency room and try to get myself admitted.    I was so frustrated and feeling so sick, I was in tears as I left the message.    I had that feeling once again that nobody is ever going to help me, and I will be stuck living in misery for the rest of my life!

I called my PA's office and told them that I wanted to rerun the aldosterone and renin tests.   I told them that I learned on the Internet that diuretics can affect aldosterone and renin levels.   They lower those levels.    I had been on hydrochlorothiazide for 2 weeks prior to having the blood drawn for these tests!   I had stopped 4 days before the blood draw because of my extremely low blood pressure.  Since diuretics help to lower blood pressure, I had to stop.     I told my PA's nurse that if my aldosterone was too low and my renin was very low/normal, they might even be lower if I had not been taking the HCTZ.    She said she would speak to one of the doctors there about this and get back to me.

My endo's office called back and told me that the endo was thinking there just might be more to my problem now than just thyroid issues.    I said, "I'm guessing she's thinking an adrenal problem?"   She said, "Yes."    Hmmmmm............imagine that!     I told her that I have been telling my doctors for a few months now that there is something wrong with my adrenals, and I'm happy the endo was thinking that now too!    She said the endo had ordered a LOT of bloodwork, and they would mail it to me.   I asked her if the endo had ordered the 24-hour saliva cortisol test, because I really wanted to have that one done.   She told me that that test was included!!

In the meantime, my PA's office called back and told me that the doctor had agreed to rerun the aldosterone and renin tests!    Holy cow, the day was getting brighter by the minute!!!     She said they would fax the order for those to the hospital where I go to get my blood drawn.

I hung up the phone and decided it might be a good idea to call the endo's office back and ask them to also fax their orders to the hospital too, so I wouldn't have to wait for days to get the blood drawn for all of these tests.   The office was closed at that time, and I couldn't leave a message.    So I called this morning, and they were happy to oblige.   So now I guess all of the orders are at the hospital waiting for me.    I was thinking about going tomorrow, but I forgot  and drank some strawberry-banana smoothie with my granddaughters tonight, so I messed up the fasting!   Darn it!    Now I'll have to wait til Monday.    

I also learned today that cortisol helps the body's cells to absorb T3 from the blood.    Many times a person with adrenal insufficiency will have normal or high levels of serum T3 but still have symptoms of hypothyroidism.   That is because their cells are not properly absorbing the available T3.  This all makes perfect sense!   Even though my T4 was actually revealed as low with these last results, the T3 was still low/normal.   My guess is that if my adrenals were functioning properly, the T3 would have been much lower, putting it out of the reference range too!

So today my feet are still HUGE.   I am now pitting all over my body from this edema, my head was hurting for part of the day, my neck is stiff and sore on both sides all the way up, my upper arms are stiff and sore, my thighs are stiff and sore, the fingers of my left hand are stiff and sore, my mid-to-upper back is aching (I'm wondering if this is from the adrenals themselves), my left knee hurts, the tendons behind the left knee hurt, my heels hurt, I am dizzy on and off and keep losing my balance, I have acid reflux, I have double vision and I still have those floating cloudy things in my left eye, I am VERY weak, my ankles hurt, I had a few twitches in my eyelid and lower left leg, my ears are a little clogged, and the canals are very itchy and peeling, but I have had the biggest smile on my face the entire day, because once again I can see that bright light at the end of another very dark tunnel!!!  

So this is my BIG news!!!     I am praying with all of my might that the next lab tests will definitely reveal an adrenal issue, and I will FINALLY be cured and feel good again!    I'm almost afraid to think this, but I can't help myself.    And I can tell you this; if I have diagnosed myself for a second time, I think I might stop seeing doctors altogether!!!  

Audrey

Hi Audrey,

So good to hear that you are finally getting somewhere and I pray too that all the tests will get you a diagnosis and more important on the road to some effective treatment. That would be wonderful.

You definitely should open your own clinic with all the knowledge you've built up! I am in awe of your ability to keep going and do the job of the doctors whilst suffering from so many debilitating symptoms.

We're all behind you and willing you better from afar.

Much love,

Dee

xxx

Audrey - my fellow health warrior, you are one class act! You truly are inspirational, with all your years of suffering you just keep putting one painful foot in front of the other and fighting on! You've brought tears to my eyes with your guts and determination to fight these demons and find a way to get well again and reclaim your life. I feel very humbled and a little bit ashamed for allowing myself to wallow in self pity for so long and now you've inspired me to get back in the saddle again and kick this bl**dy pHPT's a*se - or whatever else it turns out to be! Hats off to you Dr Aud .... and praying that your suffering will soon be a thing of distant memories.

Love and hugs

Jasmine x

Yes, I salute you, too, Dr Aud!

You have struggled so hard and done so much research - you are a true marvel and an inspiration to us all!

Have a really good weekend !

Love from Tigerlily xxxx

Dr Aud
Come and diagnose me too. You are a strong woman and despite being knocked down by the medical profession over and over again you have stuck to your guns and proved them wrong time and time again.
I have everything X'd for you that this is the final piece of the jigsaw and your new happy healthy life is just around the corner waiting for you.
If it wasn't for you and the other fighters on this forum I don't think I would have had the strength to believe that I do know my body better than anyone else, not to just accept that the doctors think I'm cured after one operation and to fight on to get to the bottom of what's making me ill.
It's not normal to feel unwell all the time and you have proved that we must keep pushing until we get that cure however hard that might be when we feel like this.
Audrey I salute you you've given me hope.
Love Amanda xxxx   

Oh Dr Aud, what a phenomenal achievement! I'm so pleased that you're on the way to actual recovery   I'm proud to know you: you are a true inspiration to us all  You only need doctors to follow your instructions and order the correct tests     We'll all be signing up at your clinic as soon as possible. 

Have a fantastic weekend. 

Love and hugs 
Brigitte xx 
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Thank you all so very much. You are all beautiful!!! I know for a fact I could not have kept going through all of this without the support of every one of you! Any achievements I've made would not have been possible without so many caring, loving people behind me!

I have been on the Internet again this morning, trying to determine whether or not I could still go for this new bloodwork today. I needed to know about the fasting, since I blew it and drank that strawberry-banana smoothie last night. Looks like I only need to fast after midnight, so I think I'm good to go! It seems most sites suggest not ingesting any salt for 24 hours before these tests, but my doctors didn't say anything about this, and I ate my regular diet before the last testing, so I think I might go ahead and get this done this morning after all. I am going to call the hospital and see if my endo listed any restrictions on her order. If not, I'll be heading over to the hospital and getting this taken care of very shortly.

I also wanted to mention that my liver and kidney function both looked slightly off according to my latest bloodwork. Adrenal insufficiency can cause issues with both the liver and the kidneys.

I am thinking I have probably been dealing with an adrenal problem for many years, but never gave that any thought until recently. If my body has been struggling for years, it's no wonder I am in such bad shape now. Better days are ahead!! I hope.   

I'd better start getting ready for my hospital trip here. Oh, before I go, I have something funny to tell you. A few weeks ago, I had to call the hospital lab to ask if they were open on Sundays. The woman answered the phone. I said, "Hi, could you please tell me if you are open on Sundays?" The woman said, "Audrey, is that you?!" This is funny because this is a big hospital, and normally the people there have no idea who you are when you call. I think I have been at the lab WAY too many times over the past few years!! I'm hoping that will all change very soon. Although, I've gotten to know those people so well, I actually enjoy going over and seeing them. I guess I could just stop in and say hello from time to time. I think that might be much better than getting blood drawn every week or 2. What do you think?

Ok, I've got to get ready here. I hope you all have a beautiful day, and thank you again for always being there for me!

Hopefully, soon to be deflated,
BLOW FISH!

Good luck Audrey and let us know when you get your labs back. 
You suffered a lot physically and emotionally with parathyroid disease.  I say emotionally because it took them so long to treat you.

If you do have low adrenal function, do you know if you would get replacement therapy for this? 

Let us know how your labs turn out.

Nancy

Jasmine,
      You have shown remarkable strength through everything that has gone on with you. 

You are an inspiration to us.  

So glad to see you back on the board.

xxx,  Nancy

Yes Jasmine
It's lovely to see you back  
You are a real warrior   
Love Amanda xxxx

Well, I now have a bit more time to post something. I was trying to hurry this morning to get to the hospital for the bloodwork, which by the way did not go as planned, and I am not happy about this.

All of the lab scripts were faxed to the hospital from my PA's office and my endo's office. I needed 2 tests rerun that my PA had ordered last week. I needed the aldosterone and the renin levels retested, because they were low and low/normal when tested the first time. I explained this over and over again to the girls at my PA's office on Thursday. I thought they understood. Well, when I got to the hospital lab, I noticed that ALL of the previous labwork was ordered AGAIN, not just the aldosterone and renin!! I had already been discussing different things with the girl at the lab, and I really didn't feel like trying to explain that, so I just let them run it all again.

Also, the 24-hour saliva cortisol test that I REALLY wanted run, and which the girl at my endo's office said they DO order, and another girl there told me it WAS ordered for me, was NOT on the list of tests this morning when I got to the hospital!! Why is it so hard for people to follow instructions?! Why does everything always get screwed up?! The woman at the hospital lab said they don't even handle this test, and that I would have to call around to other hospitals and labs to see if they do. So I have been on the phone for about an hour trying to find someone to run this test, IF I can get a script from my endo, which I thought I already had! I did find a hospital nor too far from here. So if I can get that script, I know where to go.

I am praying that the new aldosterone and renin levels will come back VERY low this time, and I won't need the 24-hour saliva cortisol test, but I'm not planning on that, because NOTHING seems to be simple of fast when it comes to me and my health issues!

Also, since the girl at my PA's office goofed and reordered ALL of my most recent labwork, the 24-hour urine cortisol was also reordered!! I explained to the woman at the lab that I really didn't think my PA would want to reorder that test. So the woman gave me the jug and the instructions just in case. Now I also need to call my PA's office again and find out if they want that rerun.

It was so funny, but at the end of the day Thursday, when I had everything straightened out with my PA's off ice and my endo's office, I thought it all seemed to go way too smoothly. I should have know it was going to be all topsy turvy!

I would also like to say that you are ALL inspirations to me! You are all suffering your own terrible battles, but somehow find the strength to continue on your journeys to good health. My hat is off to you all!!

Jasmine, it is GREAT to see you back on here!! It is perfectly understandable why you felt the need to disappear for a while, but I'm VERY glad you're back!

Nancy, I guess if I am diagnosed with adrenal insufficiency, I will need replacement therapy. I am not sure exactly what that would consist of. I guess it all depends on which hormones are found to be too low. I'm guessing the aldosterone would be one. I'm waiting to see how low the cortisol is. My last serum cortisol test revealed a cortisol level in the low/mid range, but it was half as high as it was 3 years ago. I'm hoping the blood today will reveal an even lower level, so I might get diagnosed quicker.

You're all so cute about the clinic! I'll tell you what, if I open a clinic, I'll only do so if you all agree to come and work with me. What do you say? I think we'd make a great medical team!

Thank you all again for all of the very kind words! You're all VERY special people, and you mean the world to me!!

Audrey

Audrey I hope you get them all squared away. It looks like you are on to the problem, now it you could just write you own lab slips you could fire them all .lol Keep us posted.      

Well, don't think I haven't thought of a mass firing, Kathi! I was discussing this all with the woman at the lab the other day. She agreed that they all should be fired. I still can't believe nobody thought of this. I have so many symptoms, and I've been complaining of them all for so long; why did someone not think of the adrenals?

I am just so afraid they are not going to diagnose it because my levels are not outrageously abnormal. I went through this exact thing with the HPT! My ionized calcium was always normal, my phosphorus was always normal, and my albumin was always normal. Sometimes my serum calcium and my PTH were normal; although, the PTH was always inappropriately high for every calcium level. That was why it took 3 long years for me to get diagnosed with HPT! I can't bear the thought of feeling the way I do right now for 3 years, fighting for a diagnosis! I don't have much left to fight with. I am totally drained.

A bit of good news here, and I do mean a bit. It's not much. Some of my latest lab results are in already! That new hospital site is amazing! Oh, how I wish they would have had this during the 3 years I was trying to get diagnosed with the HPT! With adrenal insufficiency, the sodium level is usually low. Mine is not. It is 138. Normal is 135-146. My sodium was 139 in 2011. It jumped to 140 this past February. Then if fell to 138 and has been there since. Might not mean much, but I am happy that is is coming down. That might help with a diagnosis. Also, my potassium is rising, and that is also a very good thing, because potassium is usually high with adrenal insufficiency. It was 3.8 in 2010. It stayed between 3.8 and 4.1 for 3-1/2 years. Normal range is 3.5-5.1. It is now 4.4, the highest it has ever been. So it too is still normal but climbing, and that is very good!

All of the adrenal tests were sent to another lab, so those results are not in yet. I pray they look awful and will be enough for a diagnosis.

If I have diagnosed myself for the second time, I think even if I don't fire my doctors, which would be very tempting, I think they will have a much greater respect for me and will learn to pay more attention to their other patients when they have suggestions regarding their own health.

Audrey

Keep thinking positively Dr Aud and hope the next lot of test results don't take too long.

Love
Brigitte xx

Thanks, Brigitte.    

Actually, I already received some of my latest labs results, and I will mention them here in a minute, but first I'd like to say that my PA's nurse just called to inform me that my PA has seen my lab results of July 11th, and everything, except for my thyroid, looks just fine.   I guess she didn't think that aldosterone of 4, even though considered abnormally low all over the Internet, is anything to be concerned about.   Even though, I am getting weaker and more nauseous by the day, I still look like a little blow fish from the edema, I am dizzy, my blood pressure is still low at times, I am so exhausted I feel like I'm going to simply collapse, etc.    Yep, all is well.   REALLY?????   I guess as long as levels are not flagged, the patient must be just fine!        My PA suggested I contact my endo so she can address the thyroid issue, since my T4 was revealed to be a bit low with this set of labs.    I told her I contacted her last week, and she also suspects an adrenal problem, just like I do!  

Ok, now for the latest labs.   My free T4 is still just a tad low.  The free T3, for some reason, is not posted yet.   It would appear my immune system is struggling, as my hemoglobin, hematocrit, and white count are all VERY low/normal now.   I'm guessing this might be why I have been dealing with so many darned UTIs over the past several years?!    I have a hunch my adrenals have also been struggling for many years.   I'm thinking they are just now getting to the point, where I cannot ignore the issue.

All of the adrenal tests, unfortunately, have not been posted yet, including the 24-hour urine cortisol test.    I am checking the hospital's website every few minutes in hopes they will be there, but nothing yet.    

I called my endo's office to request the 24-hour saliva cortisol test AGAIN, since they did not order it with that last bloodwork like they said they did.   I really need to start the diuretic to take care of this edema, but I can't until all of the adrenal tests have been completed, since the diuretic can affect those results.   If my endo's office would have done as I asked last Wednesday and ordered that darned test, I could have been on the diuretic for a few days now.

I am praying with all my might that these new adrenal test results will be way off the charts so I won't have to suffer like this much longer.    I pray it will not be like my HPT diagnosis ordeal!

I am learning more and more about adrenal insufficiency, and learning that more and more of my symptoms could possibly be caused by this.   I have learned that inadequate amount of adrenal hormones can keep thyroid hormones from being absorbed by our cells, which could cause thyroid tests to look normal, when, in fact, the body is still struggling with hypothyroidism.  

I learned that hypoadrenalism can affect the lungs, and I haven't posted this yet, but my lung x-ray of last week revealed what appears to be scarring on my right lung.   Yes, sarcoidosis came to mind, but the report just said a small amount of scarring, so hopefully this is different.   I did learn that repeated use of some antibiotics can cause scarring of the lungs.   The one I use was not listed, but I have taken it now 6 times a year for the past several years because of the recurrent UTIs.    

The list of symptoms for adrenal insufficiency includes recurrent infections due to the suppressed immune system, so I'm hoping (and I know this is hoping for a lot!) that once we take care of the adrenal issue, these darned infections will stop or at least decrease in number.   That would sure be nice!

I also learned that people with hypoadrenalism are extremely sensitive to light.   My eyes are so sensitive, for years I've been needing to wear sunglasses even on rainy days.

The list of symptoms goes on and on, and I have just about every one of them.  This reminds me so much of the HPT battle.   That really scares me.   I can't imagine living this way for 3 more years, like with the HPT!    I can't imagine living like this for another day!

I am waiting to hear back from my PA's nurse to see if she wants me to rerun that 24-hour urine cortisol test.   If you recall, they reordered that complete set of labs last week, when I requested that they just reorder the aldosterone and renin!   I should have just done the 24-hour urine test again and not bothered to ask about it.  I mean, there might be a chance the results might look worse than the first time, right?    Now, I'm sure she'll call back and tell me not to repeat the test.

I'm also waiting for my endo's office to call back.  

I made vet appointments for both of my cats, and I'm wondering how I'm going to get them there feeling as weak as I do.   I guess I'll manage.   I want to get them all taken care of in case I might need to be hospitalized for this.   I just want to be prepared.

I hope you're all having a very pleasant day!

Audrey

Well Audrey, my brain is malfunctioning today and it's not so easy to take in all that information and process it in the right way. However, don't think negatively, because the worse hasn't happened *yet* and I'm a great believer in trying to think positively if at all possible. Good luck with everything and hopefully there will be more answers for you soon, especially as you are so well informed yourself and can ask lots of questions and not take any hassle from anyone. I know how difficult it is to cope when you feel like you can't and it must be worse for you because you've been coping for so very long. But you should take confidence in yourself because you must be darned strong to have got so far without giving up!

I hope you get your cats sorted out ok. Isn't there anyone that could help you by going with you? I know how difficult it can be because it always seems that my epileptic dog needs treatment or a checkup at the Vet's when there's only me around.

Take care.

Love and hugs
Brigitte xx

Good luck with it all Dr Aud, take care of yourself and your cats and I hope the results are what you need.
Love Amanda xxxx

Amanda, I forgot to mention, I am sort of on my own when it comes to my cats' appointments this week.   My husband never helps me with that since he's at work.  My step dad who lives 2 doors down is on a biking trip.   My daughter and her family are leaving on vacation tomorrow morning.  And my son works 2 jobs and is not available either.    I guess I'll manage somehow.    It is funny how my cats are slowly losing weight as they age, but I swear they're getting heavier every time I have to carry them to the vet!     

Dr. Aud

Yes I bet they feel heavy, when you feel as unwell as you do you don't have any extra energy to do anything other than just get through the day.
That is what it's like every day just getting through it, not enjoying it just trying to do the things you have to do until it's time to get up and do them all again.  
Hope you get everything done, be careful.
Love Amanda xxxx