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ONE MORE ENDOCRINE PROBLEM TO ADD TO MY LIST

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ONE MORE ENDOCRINE PROBLEM TO ADD TO MY LIST

Post by Little Audrey on Mon Apr 18, 2016 1:56 pm

I had been suspecting this for many years, and now I have been officially diagnosed with adrenal insufficiency.     I was diagnosed with hypoaldosteronism exactly 2 years ago.  Since aldosterone is another adrenal hormone, I always suspected a cortisol problem too.   It appears my hunch was right on the money, and I have diagnosed myself for the 6th time now.

I had had my serum cortisol level tested a couple of times through the years, and it was within the reference range both times, so the issue was dismissed.

I had many symptoms of low cortisol, but many of these symptoms are similar to symptoms of other endocrine issues, so for the past 35 years, I've been blaming it all on thyroid.    One of these symptoms was relentless severe edema.    My doctors kept prescribing diuretics and telling me there was no apparent cause; that it was simply chronic.   Yes, since it had lasted for 35 years, of course it would be labeled chronic, but SOMETHING had to be causing it!    My doctors gave up on trying to figure this out. I did not.

Four weeks ago, I became VERY exhausted, weak, shaky, and nauseous.    These symptoms were VERY similar to the symptoms I experienced 2 years ago when I was diagnosed with low aldosterone, which is another adrenal hormone.  The only differences this time were that my blood pressure was still looking good (it was VERY low before treatment of the low aldosterone), and this time I was having a LOT of trouble dealing with ANY stress AT ALL.    One day a penny fell onto the floor, and it scared me so badly, I became VERY weak, shaky, nauseous, and felt like I was going to have a heart attack and collapse to the floor!     This was happening to me repeatedly over very similar incidents.     Talking to people, especially on the telephone made me VERY sick.   I had to stop taking phone calls.    I also had to stop playing Word With Friends on Facebook, because the stress of making moves with that game also made me VERY sick!    I would get very weak, shaky, and nauseous.    I also started dealing with a LOT of intestinal issues at this time.   I also was having some very severe abdominal pain.    There was no specific area for the pain, it was my entire abdomen.    I KNEW this was a cortisol problem!

I had been putting off taking the 4-point saliva cortisol test for quite a while, mainly because my insurance wouldn't cover it.   Most doctors here in the US won't order this test either.   Well, I finally decided it was time to order this test myself.  

I sent off my saliva to the lab, and I called to see if they could please rush the process.  I didn't think they would be willing to do this for me, but these people were amazingly wonderful, and agreed to do so for me.    They even called me twice to let me know how it was going and to discuss it all with me.    They were GREAT!      

The day before I was to receive the results of the saliva test, I called my nephrologist's office to make an appointment.   I knew he was only in this particular office once a week, and I wanted to make sure I could get in, so I could start treatment as soon as possible!    I was VERY Sick when I called to make this appointment.   Apparently, the nephro's nurse could hear this in my voice.    I told her of my symptoms.   She told me to get over to the ER immediately!  She said I needed help and should not wait to see the doctor.

So I went right over to the ER.    The doctor there was also amazing.   I told him I was pretty certain I had a cortisol problem.  He asked why.  I told him of my symptoms and that I had been treated with another adrenal issue (the low aldosterone) 2 years ago.   He listened and then said, "Yep, that's cortisol."

The ER doctor ordered a lot of labs.    They needed 7 tubes of blood, but ended up drawing 9, because my blood kept stopping (I had to be stuck in 5 different places to get this blood!), and they were afraid the blood would not be acceptable for the testing.  They also inserted 2 ports while they were at it!    The nurse didn't like the first one, so she inserted another one.  Crying or Very sad   It was not a fun time for sure.

A while later, the nurse came in with a stress dose (100 mg) of Solu-cortef.    The result of the serum cortisol test was not available yet, but the doctor was so sure this was a cortisol problem, he wanted to go ahead with the cortisol treatment.   I was so sick, I was not going to argue!    I needed help!     So she injected the Solu-cortef.    Almost immediately, I felt MUCH better!

The next day, the result of that serum cortisol test was in.     It was 4.8, which is still within the normal range.  I was very surprised.     Still, I KNEW this was all being caused from cortisol that was too low!

The results of the 4-point saliva test came in this day too.    All 4 levels were within the normal range, but 2 of them were at the very bottom of the range.    This too surprised me.   I was expecting these levels to be MUCH lower.    Still, I did not give up with my thinking of this being a cortisol problem!

I called my nephro's office back to schedule an appointment.   I was able to get one just 3 days away.   

My neprho looked at the results of the 4-point saliva test and didn't say anything.    He then looked at the serum cortisol level from the hospital.   He said that 4.8 was WAY too low, and that it should be at least 9.    I reminded him that the blood drawn for that test was drawn at 3:00 in the afternoon.   Normal cortisol should be the highest in the morning when we awake and then fall all day long, which is why I wanted to remind him that this blood was drawn in the afternoon.     He shook his head and repeated that my level at 3:00 p.m. should be at least 9.     He told me I needed some cortisol!   YAY!!   So, he wrote the script.  I now take hydrocortisone twice a day.

I am far from well yet, but doing much better.    I have more energy, and I am not nauseous anymore.    I still get very weak and shaky at times, especially during the slightest bit of stress.    I am hoping this will stop eventually.  

I would like to add that the awful, relentless edema I've been dealing with for the past 35 years, is now almost completely resolved!     I'm still having some trouble with the intestinal issues, and I do hope that stops soon, because that is VERY annoying!

So I now can add adrenal insufficiency to my list of endocrine issues.    Not happy to know I have another problem, but THRILLED to finally know the cause of some of my symptoms and be able to start treatment to resolve them!

Haven't seen anybody on here lately.   I do hope you're all doing well!!     Miss talking to you all.   

Audrey

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Re: ONE MORE ENDOCRINE PROBLEM TO ADD TO MY LIST

Post by Hadleigh on Mon Apr 18, 2016 5:46 pm

Hi Audrey,

Well good news indeed for you, hopefully you will continue to get better and better. Over here adrenal insufficiency is not on the docs radar, just not recognised as a problem, many people on the thyroid forum self medicate with hydrocortisone which is slightly scary but needs must. I did a cortisol blood test a few weeks ago but I can't remember the result, I think it was possibly suspect but there was no point in trying to get my GP to take notice so I haven't bothered with it.

We were ok just about, I have been battling with serious uti problem, not convinced all is well just yet but hoping so. We weren't sure about carrying on with the forum as it's really not used much these days but the renewal was done automatically so looks like we will be around for another year.

Keep us posted on your progress, certainly sounds promising.

Nelly x
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Re: ONE MORE ENDOCRINE PROBLEM TO ADD TO MY LIST

Post by Little Audrey on Mon Apr 18, 2016 8:28 pm

Hi Nelly,

Great to see the forum is still up and running!    I can't imagine why more people are not taking part.   This is such a wonderful place to share and learn, not to mention the support!      I will stick around as long as the forum is available.  Sometimes I can't seem to get on here as often as I'd like.   I've got a lot going on here, which I think has a lot to do with the adrenal insufficiency.     I'm sorry if you did not want to keep fooling with the forum, but I'm very glad it's still around.  Smile

Here in the US, a lot of people claim to have adrenal fatigue.    Most doctors won't acknowledge that condition, since there is no lab test to diagnose it.   However, adrenal insufficiency is when your adrenal glands are not producing adequate amounts of hormones, and in that case, it can't be ignored.    I am starting to wonder if maybe many people who claim to have adrenal fatigue are actually on their way to having full blown adrenal insufficiency, but maybe it just hasn't gotten to that point yet.    

I'm very grateful that my nephrologist was knowledgeable enough to know that hormone levels can be within the reference range, but not producing adequate amounts of hormones.     It appears this is the 3rd time this has happened to me.     I had many symptoms of hypothyroidism when my thyroid levels were within the normal range, and I think a lot of doctors are now realizing this is a real possibility now.     When I had hyperparathyroidism, many times my levels were within the normal range, but I had many symptoms, and then had the 2 tumors removed.    And now, the same seems to be happening with the adrenal insufficiency.     I was so sick, there was no way I could function.   I honestly felt like I was dying.    I am very blessed to have a doctor who realizes this!    Actually, he is the ONLY doctor of mine who does.   

My PA told me last Friday that she herself does not treat anything if the lab results don't indicate a true problem.    You would think that after watching me experience all I have with various issues and normal lab results, she would have learned something from that.   Maybe some day if she herself is terribly ill with horrible symptoms, and HER lab results are not extremely out of range, she will finally get it.

I'm so sorry to hear about the UTI problem.   I do know how awful that is!   You poor thing.    I still have not had one since Thanksgiving, which was almost 5 months ago.   I'm still taking the daily, low-dose antibiotic.   I HATED to do that, but getting a UTI every 7 days for a couple of months, I just could not handle it any longer.    I fought taking that daily antibiotic for many years.   I told my doctors I wanted to figure out a way to stop them myself.  I tried EVERYTHING, but couldn't stop them.     I have an appointment next month with a urogynecologist, who I'm hoping can help me.   I still think my bladder needs lifted again.   I'm hoping she will agree to take care of that for me.    I just hope I don't harm myself terribly with the daily antibiotic before she can!     My nephrologist warned me of fungal infections from the long-term use of this antibiotic, which so far I have managed to avoid.    I pray every day that I can continue to do ok on it until I can find some help.   

I do hope your UTI is now on the way out for good!!    Fingers are crossed for you.

How is Edwin doing?   Hopefully, he is doing better.  I know he has been suffering greatly with some very serious issues.     

I am so grateful that the 2 of you started this forum and are keeping it going!   I will do my best to get on and post more often.  

Take care!

Audrey

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Re: ONE MORE ENDOCRINE PROBLEM TO ADD TO MY LIST

Post by Admin on Mon Apr 18, 2016 9:22 pm

Hi Audrey

Good to hear that you have made some progress.

Doctors here just blank you if you mention Adrenal anything.

I started dialysis mid-February.  It was a struggle initially, but I now feel so much better than I did in 2015 when i was trying to delay dialysis.
My iron is low at the moment, so I will gain more stamina once this recovers.

I have hurting man boobs, would you believe.
My prolactin level is very high, which could be a pituitary tumour and I am wondering if this is also affecting cortisol.
This will be investigated next month.

I reckon that I have finally found the right combination of T3 and T4 to relieve most of my hypothyroid symptoms.  I expect more improvement when my iron level recovers.

Edwin
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Re: ONE MORE ENDOCRINE PROBLEM TO ADD TO MY LIST

Post by Little Audrey on Thu Apr 28, 2016 3:25 pm

Hi Edwin,

Great to hear from you!    I'm very sorry it has taken me so long to reply.   Couldn't seem to get on here for a while.

I have a question for you.    Are your doctors aware that adrenal insufficiency can be fatal?!!    How can they dismiss a disease that can be fatal?!!   If my cortisol level drops too low, I can go into a coma and die!!     I am not speaking of tired adrenal glands, I'm speaking of glands which no longer function or produce adequate hormones.     If you recall, when I was diagnosed with the low aldosterone (another adrenal hormone), my blood pressure was staying down around 76/43.    Any idea what that feels like?    How could any doctor dismiss that?!    I have learned that there are a lot of idiot doctors on the planet, but it would take a real dingbat to dismiss actual adrenal insufficiency!

So glad to hear the dialysis is helping you to feel better!   I'm glad you hung in there when it was rough at first.    It's always so very nice when something improves!

Sorry about the suspected pituitary problem.    I was told a while back that I needed a pituitary MRI, because I was found to have an empty sella turcica during a recent cervical spine MRI.   The sella turcica is the space where the pituitary gland should be.   Shocked    The results of my MRI stated that my pituitary gland appeared to be flattened.   I'm wondering if this is affecting all of my endocrine issues!      I think it might be time to get that pituitary MRI!     I hope you can get your problem figured out.  If it's a pituitary tumor, get that bugger the heck out of there!    You certainly don't need that.

Glad you got the thyroid levels looking good.  That should help you to feel better too.    I think mine are about optimal now.   I'm hoping once we get the cortisol issue and the iron issue all taken care of, the thyroid hormones will look better and function more efficiently.   Guess we just have to continue chipping away at things until we get it all figured out.    Not easy sometimes, but we don't have much choice, do we? 

Take care and continue to improve!

Audrey

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Re: ONE MORE ENDOCRINE PROBLEM TO ADD TO MY LIST

Post by Admin on Fri Apr 29, 2016 11:48 am

Hi Audrey

I think that Adrenal anything is considered to be a myth by most of the UK medical profession.

Anyway, it is on my list to discuss with the Endo when i eventually see him or her.  This month's appointment was postponed because of the junior doctors strike.

I no longer take much notice of my thyroid levels, preferring to adjust my dose according to symptoms.
There is no test that provides meaningful information on how much T3 is being absorbed.
It is the level of absorption of T3 that determines hypothyroid symptoms.

Edwin
(typed very slowly using one-finger, left hand, while on dialysis)
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Re: ONE MORE ENDOCRINE PROBLEM TO ADD TO MY LIST

Post by Hadleigh on Fri Apr 29, 2016 1:01 pm

Adrenal failure (Addison's disease) is taken seriously but adrenal fatigue or insufficiency is bit more tricky.

Nelly
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Re: ONE MORE ENDOCRINE PROBLEM TO ADD TO MY LIST

Post by Little Audrey on Fri Apr 29, 2016 1:51 pm

Over here, adrenal fatigue is still questionable as a serious issue, but adrenal insufficiency, when your adrenals are not producing an adequate amount of cortisol, as proven by testing, is taken very seriously.    Addison's and adrenal insufficiency are sometimes used interchangeably.     I think in time, the medical world will realize that there is such a thing as adrenal fatigue.   I think when the adrenals are beginning to struggle, that should be considered adrenal fatigue.   If left untreated, in  time the patient will progress to full-blown adrenal insufficiency/Addison's.    

I thank God I found a doctor who understands all of this, because as sick as I was, I could not function, and I could not leave my home.   As mentioned earlier, I had the same symptoms as when my aldosterone was found to be too low, with the addition of becoming VERY weak, shaky, and nauseous over ANY stress at all, such as speaking to someone.    My husband and I were discussing something one night, and I became so weak and nauseous, I had to tell him to stop talking.    I couldn't handle the conversation.     I had to stop taking phone calls altogether.   They were even worse.     I had to stop playing the game Words With Friends, because trying to make moves on that game stressed me out so badly, it made me sick!   

There is really no way to describe the extreme, deep weakness felt when cortisol is too low.     It feels like it's in the bones.    The body just feels like to continually wants to collapse.  

I also had terrible abdominal pain, constant acid reflux, and intestinal issues.   All symptoms of low cortisol.    It made me foggy brained too.    When I left the hospital that night after being in the ER, where they gave me a stress dose of cortisol, we were driving home, and everything looked so clear, and I could keep my eyelids open again.  It was amazing!

I feel VERY sorry for you all over there in the UK if your doctors don't take this seriously.   I pray none of you ever have to deal with it.

I am clearly not well yet, as even typing this message is making me very weak and shaky, but I'm MUCH better than before we started treatment.

Audrey

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Re: ONE MORE ENDOCRINE PROBLEM TO ADD TO MY LIST

Post by Little Audrey on Fri Apr 29, 2016 2:09 pm

I might add that I think adrenal insufficiency is the step right before Addison's, but I have heard some doctors call all primary adrenal insufficiency Addison's.

All I know is that I was VERY sick and clearly needed cortisol.    My body seems to be extremely sensitive, and when something is even slightly off, I feel terrible symptoms.    I think I mentioned this before.     It's been that way with the hypothyroidism, hyperparathyroidism, iron deficiency, and now the adrenal insufficiency.    It is very sad that as sick as I was with all of these issues, there are some doctors who would not have treated me.     That is why I ended up going to Tampa for the parathyroidectomy.    Nobody here in my area understood that my calcium did NOT have to be sky high for me to have adenomas which needed to be removed.    My doctors here were all totally shocked to find I had 2 adenomas!

To be honest with you, I am tired of having to convince uneducated doctors that I am sick and need help, and it seems it will be this way with everything for the rest of my life.    My PA would not diagnose the hyperparathyroidism because my levels were not high enough according to her medical books.   She would not diagnose the hypothyroidism, because according to the books, my levels were fine.   She would not diagnose the iron deficiency because my ferritin was 11, and the reference range was 11-307.   I had to find a hematologist to diagnose this.   He diagnosed it immediately.    My PA also would not have treated the adrenal insufficiency, because she didn't think my levels were low enough, but my nephrologist picked right up on this and told me my cortisol was not nearly as nigh as it should have been.    As sick as I was, I wanted to jump up and give this man a hug!    I KNEW it was a cortisol problem.   I'm so thankful he knew it too!

All I can say is if you are so sick you think you're dying, don't ever stop searching for a doctor with a brain who understands and knows how to diagnose and treat you!

Audrey

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