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01/09/2011 07:40 AM

addisons, cushings????? HELP!!!!!!

jewels71
jewels71  
Posts: 11
New Member

I have been looking for answers for 5 years with no results, I have been to doctor after doctor who told me I am suffering from depression, I know my body and yes I do have depression but, it is only a symptom of what I have, anti depressants have a reverse effect on me and I have been on many. I went to see a new doc in august who diagnosed me with a vitamin b-12 deficiency and for 5 months have been taking shots once a week, 2000mcg b-12 suppliment a day along with a multi-vitamin and vitamin d just in case. my symptoms are getting worse to the point I can not work anymore, I am a single mother on the verge of losing everything because of my undiagnosed illness. my doc now feels I have an adrenal issue, I had a dex test and 2 days later she called telling me my cortisol level was low when I got a copy of my results it was less than 1, my research shows this is normal, she refered me to an endocrinologist but, can not get in til end of february and PCP is leaving all test to endo, so can anyone tell me if these symptoms sound familiar.

severe fatigue even after good sleep, irritability, pain in lower back, knee, abdomen, and shoulder, can not handle stress, sleep issues, breathing issues (asthma, sleep apnea(was diagnosed at 138lbs docs found that baffling), headaches, cold hands and feet sometimes body, memory loss, loss of cognative functions, vertigo, dizziness with paleness, face and head become hot and red while the rest of me stays at normal temp, sugar cravings, weight gain(19lbs in 3 months), nausia, excessive urination, drink alot, confusion, weakness, depression, anxiety, being around people or places to long wear me out, tire easily after doing anything including cleaning, excersizing, reading, thinking, etc...., no libido, IBS, forgetfulness, bruise easily, lose balance like being clumbsy or uncoordinated, have trouble motivating, low to no energy, zone out (lethargy), have bad side effects to most medications, ringing in my ears, hair went from wavy and full to limp and straight, tingling like electricity running through my head, heart palpitations, heartburn, at times systolic bp gets lower than 102, itchy head and a few others.

I was rarely ever sick or had any side effects to any medications until 5 years ago so these symptoms just started between then and now and gradually getting worse. if anyone can tell me anything or advice, maybe what else it may sound like, I will take any advice or do just about anything I am at my whits end.Sad

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01/09/2011 08:44 AM
Rhub
Rhub  
Posts: 168
Member

I have almost all of those symptoms, and I have AI, but the doctors think I have other things wrong with me as well and are still testing. The worst part for me is not knowing what is wrong and if there is a medication to fix it so I can get my life back. It sounds like you feel the same way.

01/09/2011 12:01 PM
kgo
kgo  
Posts: 603
Member

Sounds like you may be missing more than one hormone.

Thyroid helps control body temps....

My daughter has pan-hypopituitarism. Her AI is considered secondary b/c it started in her pituitary and not in her adrenal gland. So she does not make ACTH whcih is the hormone that tells your adrenals to make cortisol. She is also missing many other hormones. Have they checked your thyroid or any other hormone level?

and if it is using the same scale, a less than 1 reading means you have almost no cortisol. I would try to get on a cancel list at that endo. No cortisol can create a crisis. Some of your symptoms sound like crisis. Did this PCP give you hydrocortisone or Dex or Pred? Find out more test results and ask about all your pit hormones. My daughter and a few people here are AI because of pituitary tumors. Some were cancer some not. Maybe if your other hormones are out, it might be time to take a look at your brain through and MRI. The cognitive stuff could be AI but it could be something else too. I would request the check for peace of mind.

Acute adrenal crisis

http://www.nlm.nih.gov/medlineplus/ency/article/000357.htm

.Acute adrenal crisis is a life-threatening condition that occurs when there is not enough cortisol, a hormone produced by the adrenal glands.

CausesThe two adrenal glands are located on top of the kidneys. They consist of the outer portion, called the cortex, and the inner portion, called the medulla. The cortex produces three types of hormones, all of which are called corticosteroids.

Cortisol is a glucocorticoid -- a corticosteroid that:

•Helps regulate blood sugar (glucose)

•Holds back the immune response

•Is released as part of the body's response to stress

Cortisol production is regulated by a small gland just below the brain called the pituitary gland. Cortisol is essential for life.

Adrenal crisis occurs when:

•The adrenal gland is damaged (Addison's disease, primary adrenal insufficiency)

•The pituitary gland is injured (secondary adrenal insufficiency)

•Adrenal insufficiency is not properly treated

Risk factors for adrenal crisis include:

•Dehydration

•Infection and other physical stress

•Injury to the adrenal or pituitary gland

•Stopping treatment with steroids such as prednisone or hydrocortisone too early

•Surgery

•Trauma

Symptoms

•Abdominal pain

•Confusion or coma

•Darkening of the skin

•Dehydration

•Dizziness or light-headedness

•Fatigue

•Flank pain

•Headache

•High fever

•Joint pain

•Loss of appetite

•Loss of consciousness

•Low blood pressure

•Nausea

•Profound weakness

•Rapid heart rate

•Rapid respiratory rate (see tachypnea)

•Shaking chills

•Skin rash or lesions

•Slow, sluggish movement

•Unintentional weight loss

•Unusual and excessive sweating on face or palms

•Vomiting

Exams and Tests•ACTH (cosyntropin) stimulation test

•Cortisol level

•Fasting blood sugar

•Serum potassium

•Serum sodium

This is from a website on symptoms of crisis. I hope you get answers sooner than later

Kim

Post edited by: kgo, at: 01/09/2011 12:03 PM


01/09/2011 12:07 PM
ITeach91
ITeach91  
Posts: 1872
VIP Member

Hi, and welcome to our forum for both of you -

I can tell you that I experienced every one of the symptoms listed by jewel before I was diagnosed as adrenal insufficient. One part of Jewel's post is confusing me, though. How could a cortisol reading of below 1 be normal? I guess it depends on the measurement system you are discussing, but readings of 6 to 23 mcg/dl are within the normal range. If yours was less than 1 mcg, then I would definitely not wait until the end of February to see an endocrinologist. Go to an emergency room if you have to, but do not wait. Make sure your general doctor's office advises the endo's office of what the cortisol reading was, because I do believe they would find this alarming.

I am especially concerned in light of the fact that you are having all of these symptoms. Low cortisol can bring on a crisis situation since cortisol is needed by every major body system and the body cannot function without it. For example, it does cause muscle weakness and cramping...think about this...the heart is a muscle!

I was also diagnosed with sleep apnea at an early age...I now believe that part of the reason for my sleep apnea is that my metabolism dips so dangerously low during the night, slowing my heart rate and breathing - that it caused the sleep apnea episodes. I haven't been retested with a sleep study since I was dx'd AI, but I know that I can "get away" without using my cpap machine now (as when I go on vacation) and I just couldn't prior to my AI treatment.

Cushings is the opposite end of the spectrum from AI - it is too much cortisol in the system. Causes fatigue, muscle aches, bloating/swelling - especially round "moon" face, bone loss, fatty deposit on back of neck, etc. On the bp, usually Cushings would go high bp and not low.

I hope that you can get in to someone soon and get the treatment and diagnosis that you need.

Deb


01/09/2011 12:23 PM
ITeach91
ITeach91  
Posts: 1872
VIP Member

I will add to the crisis symptom list that Kim gave you, some of those symptoms (like skin tanning and losing weight) only occur with primary adrenal problems. If the problem begins in the pituitary (secondary) then you may not see those particular symptoms.

Deb


01/09/2011 05:34 PM
jewels71
jewels71  
Posts: 11
New Member

hi Deb, I would like to let you know my test results were after a low dose dexamethasone test, I took 2 pills at 11pm then fasted and had blood drawn at 8 am. I have done much research that shows anything less than 1.8 DL is considered normal so less than 1 is normal, I have had an MRI which showed nothing, my thyroid was normal and am not diabetic so I am lost on this. but, it being more than 1 hormon makes sense thank you

Thank you for sharing about the sleep apnea, I have had 3 sleep studies in 2 and a half years and was told I shallow breath, I can not go without using my CPAP or I feel worse.


01/09/2011 09:19 PM
kgo
kgo  
Posts: 603
Member

Jewels, I am not sure where you found "anything less than 1.8 DL is considered normal so less than 1 is normal"

I am afraid you have been misinformed.

Serum Cortisol Normal values: for a blood sample taken at 8 in the morning are 6-23 micrograms per deciliter (mcg/dL).

Normal Values: 24 hour urine catch Cortisol test.

The normal range is 10 to 100 mcg/24 h. Normal value ranges may vary slightly among different laboratories.

Note: mcg/24 h = micrograms per 24 hours

Not every clinic has the exact values but they only differ slightly. Anything under 5 you are at risk of crisis and if you are below 1 or 2mcg/dL, you may be in crisis now. This requires immediate medical attention. AI, be it primary or secondary can be life threatening.

No cortisol means that you are not able to fight infection. Or have proper inflammitory responses to injury.

We all flow a bit differently but your highest values are represented around 8 am and swing low again in the afternoon. Then up a bit around 5pm. The reason some of what i have read about the normal swing being "low" or around zero is that we all bottom out around midnight to 1am. but we swing back up before waking. (this is of course in someone with normal cortisol responses)

If your 8am serum cortisol result is less than 1 you may very well be in crisis and need medical attention. especially with all those symptoms. Are you on hydrocortisone or dex or prednisone currently? If not, I truely believe you cannot wait until the end of Feb. to get medical attention.

I hope things work out well for you

Sincerely,

Kim


01/10/2011 02:19 AM
Waytoohandsome
Posts: 474
Member

Jewel, was this a Dexamethasone suppression test?

Or a fasting cortisol level test?

The reference ranges may be totally different, could explain our confusion.


01/10/2011 02:28 AM
Waytoohandsome
Posts: 474
Member

The dex suppression test is usually given overnight and they test your blood cortisol in the next morning. If it's this test, you're correct on the reference ranges. It's designed to lower your cortisol.

But it's typically used for diagnosing Cushing's syndrome. Excess cortisol. That shares some symptoms with low cortisol, Oddly enough.

Fatigue, for example.

Has doc checked your baseline cortisol levels to see if they're high or low? Not always easy to tell by symptoms alone.


01/10/2011 07:18 AM
jewels71
jewels71  
Posts: 11
New Member

it was a suppression test, yet was told not to eat or drink from the time I took the 1mg of dexamethasone at 11pm til I had my blood draw at 8am. I found out later it was to test for cushings and I never believed that was it because up until September I could not gain weight to save my life, now I can not lose. as for my PCP checking my baseline level, she has specified she is leaving the testing for this up to the endo and, thank god, there was a cancelation and I get to see him on wednsday.
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