Adrenal Insufficiency Community
I'm sick and tired... of being sick and tired. Help?
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I'm sick and tired... of being sick and tired. Help?

I need help. I will try not to get into a huge story, but in order to give you guys the most info possible, that may not work ;)
First, I am a 32 year old single father. I have two kids, one of which lives with me full time, the other I get every other weekend. I work from home as a professional remixer, and occasionally I go out to DJ when the money is right, but for the most part I am retired from that.
About 3-4 months ago I went to my doctor with some mental problems... confusion, thinking "slowly" (it would take me a while to think of an answer), not being able to think of words for easy things (like "chair")... as well as some severe fatigue, a bad headache, dizzyness, nausea/vomiting, and excessive sweating.
At first he said there were a lot of people coming in with the fatigue, checked that one off to a virus, and thought I may have an inner ear infection, gave me some anti-vertigo meds and sent me on my way. That didnt work, and the fatigue and muscle weakness just got worse and worse. So he took tons of blood, and one of his residents actually thought to check my cortisol level.
They told me I had a VERY low cortisol level and wanted me to go in for a Cortosintropin (sp?) test. I went in at 8am, got the 30 minute test, and he saw me a couple days later with the results. Now, he says that at 8am a normal person's level should be somewhere in the 20's, and even when its low it should be no lower than 5.0 or so.
Mine was 0.5. After the stimulation test it was 2.3.
I dont know all my numbers, but I think my ACTH level was 17? If that means anything.
- So I was diagnosed with Acute Adrenal Insufficiency.
Anyway, I went to see an Endocrinologist, and he put me on a lot of hydrocortisone. First 40mg a day. That didnt do anything for me... then he tried Predisone. That actually made me WORSE. So then back to the Hydrocortisone... 80mg a day. When that failed to do anything, it went to 100mg a day and then finally to 160mg a day. I still was so weak I could barely get out of bed, and even the smallest chore like taking out the garbage had me feeling like I had been swimming in a lake all day long, and my head, chest, and back were COVERED in sweat.
I should also note here that by MY standards, my blood pressure during this time had taken a large dip. I would always be 120/80 almost on the dot. Usually +2/+4 to that at most, never under. Since getting sick, its gone down and down. The lowest now being 101/69. The nurses all say thats in the "acceptable range" but to me thats just not right. It drops 20 points almost overnight, coinciding with all these other symptoms, and no one sees this as a problem?
Also lately (last 2 months maybe) I have been getting pains on my right side, about where my liver or kidneys would be. It almost feels like a cramp. My doctor said he doesnt think its related, but it hasnt gone away.

Anyway, I am going on and on.... my Endo doc gave up. Said he was stumped. No idea what the cause is. I do have a couple bulging discs in my neck, for which I am on some heavy pain meds (fentanyl, percocet) but have been on those for over 18 months straight now. I also have athsma. I got two cortisone injections in my neck, and don't think that has anything to do with it, am just mentioning it to give you as much info as I can.

Point is... I can't work. I can barely type THIS much. I don't get out of bed anymore, my daughter is taking more care of me than I am of her, and all I hear from doctors is "come back in a week". I have had more blood taken than I know what to do with... The med tech had to use both arms last week cuz she had to fill six vials and the one arm started to clot.
I am sick of doctors telling me they don't know whats wrong. My Endo wanted to send me to the Mayo Clinic, but my PC didn't sign off on it (so I tried to go myself... that was something I will never repeat). Just in the past week I have been to a sleep apnea specialist (who says its hormonal) and a neurologist (who says its hormonal). I have had MRI scans of my brain and my pituitary, and as far as I know, they were normal. I have also had chest X-Ray's and head CT scans done, all nada.

Does or has ANYONE had/have anything similar? I was watching a show called Mystery Diagnosis, and someone on there has had almost all the same things as I do, only she also had incontinence (sp?). But it turned out she had a tumor. They have not done any scans of my adrenal glands, which to me seem to be a problem.

Any help appreciated, sorry for the long post :)

Joe
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16 Comments Post a Comment
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Avatar_f_tn
Do you have any muscle aches or flu like symptoms ? Weakness ? Unrefreshing sleep ?

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Avatar_n_tn
I have extreme weakness and fatigue, but no real flu-like symptoms besides the nausea and thats usually only when im dizzy. My sleep hasn't been good for a while though, mostly because of the neck thing.
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Avatar_f_tn
  Your hormones have to be balanced to feel well. You had so much hydrocortisone and prednisone, it probably affected your thyroid function, which could cause the sweating and fatigue also.
Your bulging discs could be affecting nerve communication to your adrenals. You need to find out what your MRI report says. This could be very important to your diagnosis.
Hydrocortisone over 20 mgs. daily is enough to cause hypercortisolemia in some people, and Prednisone always causes problems.
Your cortisol is so low, definitely stay on the hydrocortisone, but probably no more than 30 mgs. daily, unless a doc says otherwise.

A scan of your adrenals should be done if you have been diagnosed with Primary Adrenal Insufficiency. You could very well have an adrenal lesion causing your problems. My own mother has one.
Secondary Adrenal Insufficiency would be from a pituitary problem, the reason for your ACTH test.  Find out what your MRI report says.

Enzy
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Avatar_n_tn
Thanks Enzy.
The sweating was there from the beginning, it was one of my original symptoms. As far as the hydrocortisone, the doctor is the one who had me on that much lol.
Right now he has me on 90mg a day. 50mg in the morning, 40mg in the afternoon. They took me off the Prednisone within a week, so I am not even on that at all.
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Avatar_f_tn
  I think at this point you need to find another endo, someone with more experience in adrenal issues. You need help NOW.
You will need to call the doc and ask for your MRI report. Usually, they don't call you, you have to call them. See if you can get in for an adrenal scan asap, unless your MRI indicates you have a pituitary problem, or other brain abnormality that could be causing your problem. Did you have an MRI of the bulging discs? I would think this would be mandatory for diagnosis.
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Avatar_f_tn
Oh, and the adrenals affect so many body functions, the pain in your side is almost certainly related. My son has secondary adrenal insufficiency, from a pituitary cyst. He has pain in his side frequently.
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393685_tn?1325870933
You definately need further testing with a doctor who won't frop you like a hot potatoe.

Enzy is so excellent on this type of information and I was thinking while reading to checkout the pitutiary - if at all to rule that out for sure.

Any vit deficiencies ? You could add Vit C - about 2500 mgs and some celtic sea salt to your diet - that won't cure for sure but maybe support some things if it is adrenal distress.

The predisone and HC could effect your thyroid levels alot - that - as enzy - says can be throwing you off too. Did they run those tests?

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Avatar_n_tn
Thanks :)
I am going to get a new doctor soon... you guys dont even have half the story. My doctor rarely calls back when paged, when he does its up to 3-4 hours later sometimes. I left a message with him last week wednesday because I had appointments with a neurologist and a sleep apnea specialist, and I wanted to see what he wanted me to do. I left a message with his assistant, and.... he still hasnt called me back.
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Avatar_n_tn
Oh, and they did do an MRI of JUST the pituitary, and according to the docs it looked normal.
No one has ever scanned anything other than my whole brain and my pituitary though.
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657231_tn?1390151580
Was the scan with and without contrast, and was it *dynamic* in that they did the dye while you were in the machine and took pictures while it was being injected? That is a proper pituitary scan.

Are you craving salt? Are you taking salt tablets? I have no adrenals - I know low cortisol LOL... did he give you the script for a solu-cortef and a needle for emergencies and extra cortef for when you need it? What about florinef?
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Oh my adrenal scans were normal - both before and after surgery - but they were huge - but my point is that adrenal imaging is largely inaccurate. A lot of people have had it done and it was not right.
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Avatar_f_tn
Hi, first of all it sounds like you are going through so much unecessary discomfort.  I have a feeling that there is probably more than one autoimmune disease going on and that would account for the array of symtoms (symptoms).  A crossover of diseases like Hashimoto's, lupus, Adrenal, etc. can cause the symtoms (symptoms) that you describe.  Find a really good internist who understands your symptoms, listens to your history and is willing to try different tests and treatments to rule out diseases until one is confirmed.  Unfortunately this process usually takes a long time but is worth it in the end when diagnosis is correct.
Take good care in the meantime and try to be positive as you search for the answers
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Avatar_f_tn
Wow...you need help  now.  Adrenal Insufficiency can get to the point of dangerous.  You sound like you are where I was last summer...I had the exact same symptoms.  They found a spot on my pituitary gland and Adrenal Insufficiency. GET YOUR HORMONES CHECKED AND YOUR THYROID.  I had the same problems with the Endo and other doctors.  They also found disc problems but a neurosurgeon said...something just wasn't right and the disc problem was not it  I even seen a well recommended and supposedly genious neurologist.  He thought I had chronic Meningitis until  he did a spinal tap.  I went through hell...not to mention the tests.  Finally went to a good old fashioned country doctors.  He did some tests ...said some things were just not right...looked at all my records...said there were too many cooks in the kitchen and I needed to go to Vanderbilt.  If you can at all afford it or have insurance...get your butt to Mayo Clinic if you can.  They are even better than Vanderbilt.  Don't waste anytime in doing this.  Regular Joe doctors, specialists or not...just don't have their heads wrapped around this stuff very well.  You need help NOW.  Don't wait.  You can get into a Mayo Clinic without a referral but if your doctor is smart he will refer you to Mayo if he isn't too egotistical (Many are) and get a firm diagnosis but a referral will get you in sooner. .  This stuff is horrible and I know how you feel.  They kept trying to say I needed a shrink and anit-depressants.  Thank GOd I did not listen to them and kept searching until I found a doctor.  Now mine is stumped by the kidney thing I have going on...and it IS related.  If they even did their own research they will find that the adrenals regulate your water/salt balance...thus the orhtostatic hypotension you are experiencing.  I am astounded how much more I knew about my illness than even my new Endo does.  Does not think the kidney thing is related but I know it is.  I have pain in my right kidney too...especially after urinating and it is painful...cannot even lay on that side at times. Night time is pure hell for me.  I sleep just over four hours a night...if I am lucky.  Your children need you...get to Mayo Clinic NOW.  IF you don't have the money...borrow it...have family help you.  You need to get well for your kids sake.  Don't wait on these helpless doctors...advocate for your own health...if not....?????
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Avatar_f_tn
Here is a link to read about why we should get a copy of all test results we take and keep copies at home!  Hope all gets better.  Karen  
http://health.usnews.com/articles/health/healthday/2009/06/22/patients-often-not-told-about-abnormal-test-results.html
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Avatar_f_tn
I have had that same sweating problem. It is like you are drenched! I just had cervical neck surgery for spinal cord compression. Maybe there is some connection to the spinal cord myleopathy and the sweating. My cortisol is very low also. But it seems like the cortisone makes me sweat more. I think I am on too high a morning dose.
I hope you find your answers. I also have the fatigue.
Good luck
MaryAnne
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Avatar_m_tn
I have low cortisol and sleep apnea.  I read that sleep apnea can cause hormonal problems.  You might be able to get a CPAP machine through your insurance to treat OSA so that you can sleep and refresh your hormones.  I also have pain in my left side/ribs for some reason.  My one endo told me that my problems were due to high insulin/sugar intake?  I am trying to modify my diet and cutting out all white sugars, sodas, etc...
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