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newly diagnosed with low cortisol
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newly diagnosed with low cortisol

Hello,  I had 4 surgical procedures, cystocele, rectocele, bladder repair & hysterectomy 11/03/2008 and my labs came back in the hospital with a cortisol level of -1.  It was difficult to get my blood pressure up, keep my pain at bay and I now 3 months later I have a host of symptoms that I cannot control or explain.  I have since had 2 more cortisol labs and they both came back -1.  I have an appt. with  my PCP to discuss the results next week. From what I am reading on low cortisol.... this could be very serious.  Am I jumping the gun?  I really am feeling weaker by the day, losing hair, very dry eyes & thirsty, extreme fatigue, iritability, can't focus, neck & shoulder blade pain, etc.  My job in healthcare admin is very stressful and I feel I'm losing it.  Suggestions?  Many thanks!
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Avatar_f_tn
You will feel much better when your doctor gives you hydrocortisone to take. It replaces the cortisol that you are missing. As far as I know, it is dangerous for you to have such a small amount of cortisol in you body.
Why hasn't your doctor addressed your problem with cortisol?
   Sorry I can't be more helpful.
Spin1968
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Avatar_n_tn
Thanks for the input.  It's just been 3 months post-op when my GYN doc accidentally found the low levels....she ran a series of tests while I was in the hospital trying to figure out why my BP was so low and pain so high.  I've now had 3 non-exsistant cortisol levels since surgery.  I'm sure there will be more testing?  I hope!  I suppose I've had this for some time as some of the symtoms (symptoms) have been here for years, but never seriously addressed by my PCP until my recent surgery.  It's all making some sense to me now but I feel terrible and very weak.  From what I'm reading, trauma, illness or surgery can trigger Addison's or Addreanal Insufficiency.  Maybe this is what happened?  What worries me is the level of my cortisol... minus 1.  Thanks for writing :-)
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Avatar_f_tn
I  can believe that you have such a low cirtisol level.  Just be glad that your Dr. is on top of it.  You are lucky, but, I,m sure you've had symptoms for years.  

My diagnosis was in 2003 and I had a sorry Dr, who didn't treat my symptoms correctly.  So I found a new one that wants me to go to a specialist   But I have to wait  till Feb.

This diease  can reck your life.   It almost did mine, but now I feel hopeful again.

just remember that  there is medication and you should feel better when you start taking it.

evie
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Avatar_n_tn
Thanks for the comment.  I am sorry you have had a rough time :-(   From what I'm reading on this forum, there are so many of us not feeling well and not getting the proper diagnosis and treatment.  It simply is not accecptable in this day and age.  No one deserves to have their symptoms discounted...no one!   You are correct, I am lucky to work in a large heathcare oganization.  Unfortuneately, it is in Orthopedic Surgery, but I at least have the ear of my physician bosses and can bounce this off of them.  The too agree less than 1 in Cortisol levels is quite dangerous and I see my PCP in 30 minutes to get a game plan in line...yes, I have had symptoms for years but have had most of the disregarded as pre-menopause...and I actually believed them.  I have never heard of Adrenal Infufficiency until my Cortisol levels came back non-exsistant.  I'm looking forward to a diagnosis, getting some heat back into my hands and feet, keeping the rest of the hair on my head, eyes and eyebrows from falling out, having more energy, and genereally speaking...feeling more like myself.  This is not who I am and it is very frustrating.  I feel all of your pain to some degree.  I hope and pray for eveyone who suffers from any type of Adrenal issues and wish us all better health and brighter days ahead :-)
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499534_tn?1328707778
Did you meet with your doctor today? Did he start you on meds? Make sure you take a good vit b complex daily and vit C to help assist your adrenals with the stress. You probably feel like your legs are going to give out at any time and your body to follow. You definately should be put on meds asap....hydrocortisone...no waiting game with adrenals as this can be life threatening. Please keep us updated!
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Avatar_n_tn
Hi Laura,
Saw my doc this am and NO he did not want to treat me with meds but rather ref. me to and Endo specialist. He's a nice enough guy but said he did not feel comfortable treating a Adrenal problem.  I called and there is a 9 week waiting period to see him!!  OUCH!  So, needless to say, I have had to ask one of my boss physicians here to make a call to the Endo office to see if I can get in earlier.  Even with me being in healthcare, this has been a struggle.  Some of the rest of labs came back today and my DHEA is elevated at 13.2 and my 4th Cortisol level is still minus 1.  One test pending:  Aldosterone.  Not sure what that is suppose to be or what purpose it serves?  Eveything else checked out within range.  I have a weird symptom.  Does anyone else have raising HR or irregular feeling?  My heart rasies, beats real fast and heavy and then feels like its jumping around.. then feels like all the blood is rushing to my head and I get lightheaded...weird I know...but happening.  Yes, I'm weak, crabby and just generally feeling like $^#&( !     I too am a bit concerned over not getting on some kind of meds prior to 9 weeks.  
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657231_tn?1390151580
Aldosterone and renin control how you regulate salt and potassium - vital for living.

It is rather silly (and can be life threatening) that no one can treat you in all this time.

Can you get a referral, if you need it, or find a neuro-endocrinologist at a university? You need someone who has treated adrenals as they are a bit tricky. I used to have too much cortisol and then had my adrenals removed. Now I take replacements.

If you are craving salt, have it. It helps. Your heart is beating faster usually because your blood pressure is low and your body is trying to keep up with it. Salt will help lower the beats.I get a raised heart rate, especially if it is hot or I sweat. Stay hydrated too.

Did they do a renin or ACTH test? Were they in lavender tubed? Spun immediately after the draw? If not, then they are not accurate. Both of them degrade soon after the draw in room temperature. They need to be drawn, spun and frozen. Mine vary a lot depending of the tech. I am also tan and spotty from my high ACTH.

If you start to feel nausea, you may need critical care. Be sure to look up the symptoms of an adrenal crisis. If you get a fever, you can go downhill pretty fast.
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Avatar_n_tn
Good Morning and thanks for the input.  Last night was an all time low for me.  I left work after 9 hours - no break and just fell into bed.  I could not eat, my neck and upper back, kidneys just ached too much.  The more stressful my day is, the worse my evening is re: not feeling well and being so weak.  So, I agree with you that I must start on some meds prior to see the Endo guy.   That is my project today to get this started if I have to get nasty to get it, so be it.  I'm also incredibley thirsty and have dry eyes for some reason?  I've never been this thirsty before.  I did have an ACTH and it came back within range so my PCP said this could not be Addisons.  I suppose I'll leave that diagnosis to the Endo doc when I see him.  Thanks much for the info on my tacky HR.  Today is a new day.......lets see how it goes :-)
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Avatar_f_tn
  ACTH is a pituitary hormone, and results can vary on different days. You might have an adrenal lesion. Hopefully you will have an adrenal scan too?
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Avatar_n_tn
I go tomorrow for a CT with contrast of my Ab, pelivs & adrenals.  Not sure what this all means or where it will end up, but I'll hang in there until we can find a name for this...BTW just rec'd my new set of labs I did a couple of days ago...this makes 5 labs in 3 months, 4 with very low Cortisol and elevated DHEA and Aldosteron on the low side...I'm shocked to see my Cortisol at 15!!  What can this mean?  Was the test done right, was it handeled properly or are the previous ones wrong...symtoms (symptoms) are the same?  Does anyone know if taking Zithromyicine (Z-pak) and Amoxicillian can effect cortisol levels?  I am currently in the middle of the Amox. and took the Z-pak prior for a bout of Strep Throat.  I had to go to a 2nd antibiotic since the Z-pak did not do the trick.  The time span is 2 weeks being on one right after the other.  I was not on an antibiotic with the previous labs.  
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657231_tn?1390151580
What time was the cortisol taken? Cortisol normal varies a lot in the body. It rises and falls so time of testing is very important. Elevated DHEA is showing something is going on.
Is your weight changing - going up or down?
I have to tell you that I had an adrenal (abdominal) MRI - it was normal, CT, adrenals normal and the day before my surgery to remove my adrenals, the report said my adrenals were normal.
Then... my adrenal pathology showed they were 2x norrnal size and one was nodular.  The funny thing is that I had a CT a month after the surgery and that one came back... normal. So, there you go. BTW, this has happened to several of my buddies, not just me. And if you look around, you can see that imaging is not exactly er, definitive. The surgeon knew it but the inexperienced surgical resident was treating me like a second class imposter who was out to remove body parts and treated me like garbage until the big adrenals popped out. Then he was sweet. Huh.

I do know medications interfere but really - illness raises cortisol - your body needs it to heal so in a way it is good that your body is responding a bit to heal. It may be that. I have to stress dose (add steroids) if I get sick.
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Avatar_n_tn
Hi,  just had my CT today.  I had my 1st cortisol taken 24 hours post surgery - in the hospital....very much on morphine.  they ran the test due to plumeting BP and they could not get it normal for those 24 hours...so they ran a cortisol and it came back at less than 1..then had another one done 1 month later in AM and again 2 weeks later with the supression med...still below 1.  Then ran the test again last week in AM and it came back at 15....needless to say, my PCP wants to run it again in the AM while I'm waiting to see the Endo doc.    Yes, my weight is changing.  Thankfully, I've lost 12 lbs.  Started at 152 and now 140...I'm 5'5" and 49 years of age and no real reason for wt loss...other than stress I suppose?  Maybe my low cortisol was just due to surgery?  I'm still unsure and still don't feel any better even if it is 15 now.  Sorry you had to go through that with your doc and eventual surgery...I know it can be very frustrating getting your voice heard by some professionals in healthcare and the squeaky wheel does usually get the grease!   Good luck to you.  Thanks for the comments :-)
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657231_tn?1390151580
Cortisol is time of day dependent - do you know what time of day those tests were taken? That is what I meant.

Cortisol varies by time of day. Highest in the morning, hits roughly half by 2-4 pm, lowers all day to hit a low by midnight, repeat.

Losing weight is actually a sign that things are not well if you were not trying.
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Avatar_n_tn
Ok.  All tests were done at 8:00AM...so this last one was 15 which is the higest and my doc was satisfied with this.  he does want to redo the test in 2 weeks at 8:00 am again and then just leave it be if it comes back within range again....wonder why the symptoms have not gone away?  This is still a mystery to me.  I'm going to keep researching to see if we are missing something.  Thanks so much for the questions and comments....wish you the best of luck and I'll stay in touch if I hear something else :-)
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Avatar_f_tn
Is a reading of am cortisol at a 10 range (7.0-10.) zrt labs....a good morning cortisol reading????  I am still tired when I get out of bed......I had blood tests done a while ago where my am cortisol was a 19 range (5-25) and I felt great...popped out of bed!!!!!  I had blood work done after going off of a couple hormones and my am cortisol dropped to a 10 there also...I know blood cortisol and saliva cortisol readings are different, but ZRT labs is saying that if I go any higher than a 10 saliva reading for the morning, I will feel worse!!!  But I still don't pop out of bed....I am so confused......should I be trying to increase my am cortisol level or not????????  Someone please help...I am having an awful time of this.....My dhea is way high right now too.....doc told me to supplement when i really didn't need it.......
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Avatar_f_tn
Do you gain weight when you take HC?  
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657231_tn?1390151580
You can if you take too much, take it at the wrong time etc. Most people on replacements are overweight but they are coming out with a new med that will help as it will mimic a normal rhythm in one pill, allowing for a more normal cortisol flow and they think it will help.
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Avatar_m_tn
Do you two still suffer from low cortisol? Please advise as I am being medicated for it and could possibly assist in directing you
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Avatar_f_tn
I am extremely worried about my daughter aged 11 she went for a routine blood test in hospital and they have told me she has a low cortisol level and needs further tests.  She is tired but she is 11  and very active. She is never ill but is weak and gets tired easy. Does anyone know anything about this could it of been a one off day and levels vary between days. I am very worried and need some advice
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657231_tn?1390151580
They should run ACTH stimulation testing and from that determine if her adrenals are working.
Cortisol can vary a lot but the stim test should tell the doctor what is going on.
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Avatar_m_tn
My life is wrecked thanks to all these symptoms. I have been shown to produce very low cortisol by a np, nobody treats it. My Onc told me I have Hashi's, nobody treats it, my pcp tells me it's all from the chemo I had 4 yrs ago. My sleep dr. will treat as I advise, but I don't see her often enough for dose escalation. I only feel good for a week n a half after I see her, then I turn zombie again...migraines, poor vision, pain, weak, fatigued, sleep days at a time... And I'm only 42. Trying to raise 2 15 yr old boys. I am almost done asking for help. My drs suck, except for Onc, but she's too busy. I tried ordering Armour from Canada and got levo. That makes me worse! Does anyone know how I can get or get put on higher dose of Armour than 30mg? Please email me if u do ***@**** thank you...
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Avatar_f_tn
Hi  Lew448
Have you seen an endochrinologist ?
Did you get an ACTH stimulation test?

Things to do while waiting for treatment:
Go to bed early - sleep and cortisol levels are connected. Try to be sleeping by 10pm
Try to sleep in to 9am
Try to get minimum 9 hours of sleep
1 hour before bed -turn off -let your brain prepare for sleep - take deep breaths, make some chamomile tea, listen to relaxing music or sleep meditation
Eat small meals every 2 hours  (protein/healthy fat/low carb, low to no sugar)  ( when cortisol levels are low, the body takes glycogen from the brain -leads to hypoglycemic type symptoms: lightheaded, irritable, trouble concentrating, feeling like your ready to pass out, seeing spots.....  Eating small meals every 2 hrs will help. Drink PLENTY of water.

Drink plenty of water
Remove as much stress from your life as possible - everything fom people to tv shows that are violent, suspense, arguing, fighting, etc..... Look for uplifting reading and tv and music
Get on a multi- vitamin w/ a B complex  and take a fish oil or flax supp.
Cortisol helps decrease inflammation. If your cortisol levels are low it could lead to inflammation in your entire body .
1-cut sugar -sweets,alcohol,sodas, etc
2-increase foods that help reduce inflammation -  salmon,veggies, add tumuric and cinnamon to your meals. Google anti-inflammatory foods.
3-cut out caffeine and other stimulants. I know.... If you are low on energy -you think you need stimulants.... But you need to give your body and your ADRENALS a rest. The stimulants just give you a temporary burst of every, but actually wear out your adrenals..... Give your body time to heal, take it easy, REST
4-Yoga and meditationare also very helpful. If you cannot make it to a class-go on you tube and look up meditation videos for healing,sleep, calm, etc...

Write down the time of day and your symptoms -keep a journal
Write down when your cycle /period starts, ends and the symptoms you experience


hair loss could be a result of many things -take a biotin supp and get testosterone levels tested and 17 prog
( 17 prog is a precursor ( makes) testosterone -testosterone triggers DHT production which can lead to hair loss)
If that's the case then you may also want a DHT blocker topical in addition to the biotin)

But hair loss can also be a result of low iron or a thyroid problem - so get both checked out. Both of this also cause fatigue...

Also get your iron levels and binding iron  and thyroid and testosterone and free testosterone checked. ( blood test)

Medication - keep a journal of all your symptoms while on medication. Treating hormones and low cortisol is a balancing act - you do not want too little cortisol , but too much is no good either.
By keeping a journal you will help your doctor help you. It is important that the rewards of the medication outweighs the risks or side effects.
If sexually active -be sure to ask doc. what the effects of medication are on pregnancy and child and if it ict is safe to get pregnant while on the


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657231_tn?1390151580
How were you shown to produce low cortisol? What was your testing? Can you get copies? You will need the copies to show other doctors.

Where was your cancer? Depending on where your treatment was, it can effect your hormones and yes, doctors can be pretty slow on the uptake.

Have you tried finding an endo or a neuro-endo (pituitary-endo)?
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