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Old 02-11-2005, 04:03 PM   #1
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heb12 HB User
Frustrated...adrenal gland symptoms.

Hi,
New to these types of boards, but am frustrated beyond belief and looking for advice.

A year ago, I was a healthy, 25 year old female...recently married, working full-time...enjoying life. It all started with fatigue, occasional night sweats and heart palpitations. Didn't think anything of it. Things progressed to include tremors, high blood pressure, 12lb unexplained weight loss, headaches, insomnia and numerous gastrointestinal problems. The symptoms come in the form of "attacks", which are random and almost always begin just as I'm about to fall alseep...you know, that second before you fall asleep and your body sometimes jerks?

My GP told me she thought it was anxiety. I disagreed. I am a trained health care professional myself and had no difficulties dealing with stress in my life (nothing a good workout couldn't cure!). After another few attacks and at my whits end, I finally agreed to try Paxil. Well...after 3 days/nights with zero sleep, I ended up in the ER. The only finding...a potassium level of 3.5 which is considered 'borderline normal.' Finally, after a 3 week bout of severe gastrointestinal problems and a nagging pain in the left-side of my abdomen, my GP ordered a CT scan at my insistence. The results? A "1.5cm adrenal adenoma" on my left adrenal gland. The GP stated it was an incidental finding. Needless to say, I switched GPs.

The new GP was understanding and referred me to a surgeon (urologist who specializes in laproscopic surgery). The surgeon ordered tests, which came back normal. At the time the tests were taken, I had been off work for a month and literally spent all my time resting to try and avoid the attacks (it had been working). I had not had an attack for two months at that time. The surgeon then consulted with an endocrinologist, who has ordered another 24hr urine collection test...and that's where things stand now.

The surgeon told me I need to try and provoke an attack so that it can show up in the lab tests...otherwise they won't do anything about it. I realize most of you on this board are dealing with Addison's, but has anyone else experienced their symptoms in the form of attacks? Are there any specific tests I should be requesting? I am extremely frustrated and dying to have my life back.

Any suggestions and words of wisdom appreciated greatly.

 
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Old 02-11-2005, 04:38 PM   #2
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tcnj_mom HB User
Re: Frustrated...adrenal gland symptoms.

Quote:
Originally Posted by heb12
Hi,
New to these types of boards, but am frustrated beyond belief and looking for advice.

A year ago, I was a healthy, 25 year old female...recently married, working full-time...enjoying life. It all started with fatigue, occasional night sweats and heart palpitations. Didn't think anything of it. Things progressed to include tremors, high blood pressure, 12lb unexplained weight loss, headaches, insomnia and numerous gastrointestinal problems. The symptoms come in the form of "attacks", which are random and almost always begin just as I'm about to fall alseep...you know, that second before you fall asleep and your body sometimes jerks?

My GP told me she thought it was anxiety. I disagreed. I am a trained health care professional myself and had no difficulties dealing with stress in my life (nothing a good workout couldn't cure!). After another few attacks and at my whits end, I finally agreed to try Paxil. Well...after 3 days/nights with zero sleep, I ended up in the ER. The only finding...a potassium level of 3.5 which is considered 'borderline normal.' Finally, after a 3 week bout of severe gastrointestinal problems and a nagging pain in the left-side of my abdomen, my GP ordered a CT scan at my insistence. The results? A "1.5cm adrenal adenoma" on my left adrenal gland. The GP stated it was an incidental finding. Needless to say, I switched GPs.

The new GP was understanding and referred me to a surgeon (urologist who specializes in laproscopic surgery). The surgeon ordered tests, which came back normal. At the time the tests were taken, I had been off work for a month and literally spent all my time resting to try and avoid the attacks (it had been working). I had not had an attack for two months at that time. The surgeon then consulted with an endocrinologist, who has ordered another 24hr urine collection test...and that's where things stand now.

The surgeon told me I need to try and provoke an attack so that it can show up in the lab tests...otherwise they won't do anything about it. I realize most of you on this board are dealing with Addison's, but has anyone else experienced their symptoms in the form of attacks? Are there any specific tests I should be requesting? I am extremely frustrated and dying to have my life back.

Any suggestions and words of wisdom appreciated greatly.
Hi. Have you been checked for a pheochromocytoma? This would be a catacholomines test. Here is a link for better understanding. Your problems sound like they could be related to that. Let us know what you find out.

 
Old 02-12-2005, 11:23 AM   #3
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Re: Frustrated...adrenal gland symptoms.

Well I can't be of much help,but I am going through the same thing our symptoms sound identical except I have 2 or 3 attacks a day started a 1 a month and keeps getting worse.Also was told anxiety and was on paxil for 4 months,It did nothing! Ive been to a neurologist (to rule out MS)an endocrinologist (who was about useless)Had my thyroid run 3 times with 1 out of 3 abnormal (slightly hyper).
This past week I finaly found a wonderfull internist who is a DO. who actualy spent almost an hour talking to me .She has been the first one to agree with me to have my adrenals tested.I just dropped off the 24 hr urine test this morning.Now I have to wait two weeks for results though. She also tested my thyroid again,and others to rule out lupus and TB.
Now it's just a waiting game.hhmm sounds strange to say but I hope somethings wrong with me. After a year I'm praying for them to find something.Good luck with your quest also.


Edited to add after looking over my tests my potassium is also lower end at 3.7 . I've read it's usualy high with addisons but does anyone know about Pheo?

Last edited by malcolm28; 02-12-2005 at 12:30 PM.

 
Old 02-12-2005, 07:51 PM   #4
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heb12 HB User
Re: Frustrated...adrenal gland symptoms.

Thanks for the above messages. It's nice having this forum to discuss what you're going through with other people experiencing similar circumstances.

I had heard the word 'pheochromocytoma' thrown around and I'd imagine that's what they're testing for with the 24hr urine collection (catacholamines). The endocrinologist said they need to determine if the adrenal adenoma is 'active' or not. My concern is that the test is going to come back normal (like it did before) if I don't have one of my "attacks" in that time frame and then I'll have to start all over again. I have an idea of what activities are likely to induce an attack, but the thought of having to purposely provoke one is frightening. It would be nice if doctors actually took the time to listen to the whole story...a ten minute appointment does not begin to cover the symptoms...or give you any answers.

All I know is that I know my own body and have to trust my instincts. A year ago, I was a happy healthy person and now I'm unable to work, exercise or get upset without experiencing attacks. It seems to me, after reading some of the postings on here, that adrenal gland dysfunctions are not well understood or readily identified by the majority of physicians out there.

I feel the same way as you Malcolm...and I thought they had finally figured it out when they found the adenoma. Apparently not...

Thanks again for the replies!

 
Old 02-12-2005, 09:20 PM   #5
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sadie-mae HB User
Re: Frustrated...adrenal gland symptoms.

Hiya Heb!

I'm new here, too and still undiagnosed. Your symptoms sound really frightening. I hope you are able to get answers soon.

I don't really know how excess catecholamine secretion happens-whether it is constant or episodic and occurs only when you are symptomatic. You sure do sound like you have the symptoms of a pheo.

I know you don't want to provoke an attack (that is just plain silly and dangerous for your doc to suggest) but it seems it would be tough for you to avoid having one spontaneously at some point.

I had an idea for you, though. Your doctor could give you a lab requisition (like a written prescription) for doing the 24hour urine and you could just keep the jug waiting at home until your symptoms begin. Empty your bladder (even in the middle of the night) and make that time zero to start. You'll catch it. Then, drop it off at the local lab for evaluation.

This technique is used to help diagnose cyclical Cushing's patients that only episodically secrete excess cortisol. Since it is your adrenal gland, maybe they could measure free cortisol levels also-just to see.

Good Luck!! You'll catch it, it just may take a few jugs...
Sadie

 
Old 02-13-2005, 11:23 AM   #6
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heb12 HB User
Re: Frustrated...adrenal gland symptoms.

Thanks Sadie,
That's an excellent suggestion! The thing that kills me is that I've read there are numerous things that can effect those tests...foods, exercise, stress..and the birth control pill. I read an article that said the pill can mask the hormonal imbalances and patients should be off it for 6 weeks prior to testing. No doctor has even asked me if I'm on the pill. Nice, huh? I went off it on my own, but it's only been 4 weeks. Thank goodness for the internet.

I'll keep you posted!
Heather

 
Old 06-04-2005, 08:18 PM   #7
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birden57 HB User
Re: Frustrated...adrenal gland symptoms.

I had a cat scan for my gallbladder, and the cat scan show that I have a mild prominence of the lateral limb of the right adrenal gland which may be a normal variation or represent a small adenoma, the dr sent me to a kidney dr.
and the dr. that I was going to see was call to the hospital and could not see me, so I saw a pa, and she get me to take the 24 hr. test.
could anyone tell me anything about this, the cat scan show a 2cm cyst on my kidney any help .....
dot

 
Old 07-01-2005, 05:59 AM   #8
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Re: Frustrated...adrenal gland symptoms.

Hi Heb12,

I've had very similar symptoms to yours, however we are also considering Temporal Lobe Epilepsy or a similar neurological condition due to some seizure-like episodes, phantom smells, sleep terrors and a host of other bizarre symptoms.

18 months ago I had a 24 hour urine test for a pheochromocytoma (spelling?) after some perplexing adrenaline effects. The test was negative. My GP didn't tell me that the tests were more likely to work if taken while symptoms were present, nor did she tell me the contraceptive pill might effect the outcome of the test. My symptoms cleared up, though over the past year I have noticed an infrequent but severe tremor and occassional agitation unrelated to external conditions.

In early December 2004 I suffered sudden abdominal pain around 10pm at night - the most severe pain I have ever experienced. Doubled-over, I barely managed to make it to the bathroom for vomiting and diarrhea lasting for some hours with extreme dizziness and weakness so bad I could barely lift my arm.

Since then I have had four more similar episodes, the most recent being 2 weeks ago, when I called the paramedics (for the second time in 6 weeks)and was rushed to hospital in acute pain with incessant vomiting, profuse sweating and pallor, intense heat followed by a dramatic drop in body temperature, blackouts and strange feelings of detatchment, delirium and vague hallucinatory effects such as bright sunlight when I shut my eyes. At the hospital I was administered morphine and other drugs to control the pain and vomiting and abruptly sent home with my frantic parents. I experienced distressing seizure-like experiences around a dozen times that night and the next morning went back to my local doctor in despair.

At this point my previously supportive doctor began to concur with the suspicions of the numerous specialists I had seen and suggested I might be suffering anxiety-related symptoms. I tried to explain that I had been very happy in life when the symptoms struck, and that even if I was psychotic I didn't think I could induce such tremendous pain and certainly not the flashing lights, loss of consciousness and other troubling symptoms. She reassured me that she knew me well and had seen me endure very stressful situations previously without suffering health problems. However she waved my low blood pressure and heart-rate of 180bpm off as anxiety symptoms and sent me home where I suffered nausea, dizziness and upper-abdominal pain so bad that I could barely raise my head without fighting the compulsion to vomit.

I'm going to see a neurologist in 5 weeks time and hope for a diagnosis, but in the meantime, even if my problem doesn't turn out to be an adrenal tumor, I sympathise with your distress and frustration about being diagnosed with anxiety. I don't doubt that anxiety can cause health problems, but at the end of the day, only you know how anxious you are, and if you feel stable emotionally, there's nothing more frustrating or less helpful than having serious health issues dismissed for these reasons.

I worry about the current trend to blame stress and anxiety for health problems and often feel that doctors are not necessarily qualified to make a diagnosis of psychological problems anyway. I also feel that at times the stress diagnosis can be dangerous. My sister petitioned doctors for two years about symptoms indicating serious problems. Doctor's consistently told her to cheer up, change her lifestyle, take time off work, or stop being so neurotic. Eventually she was hospitalised and a cancerous tumor the size of a football was found on the outside of her stomach. It's especially difficult for women, I think, because the medical proffession sometimes approaches women as emotional, neurotic, and prone to hypochondria. I'll hop off my soapbox now! I wish you the best for your diagnosis and wellbeing,

Emmalouise.

Last edited by emmalouise; 07-01-2005 at 06:15 AM.

 
Old 07-01-2005, 09:27 PM   #9
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Re: Frustrated...adrenal gland symptoms.

Hi Emma Louise,

Thanks for that posting. I'm really sorry to hear of your troubles. Your symptoms sound much more severe that what I've been experiencing and I agree that it's extremely frustrating to be told it's anxiety when you have never had such problems in the past.

Luckily for me, after taking 3 full months off work and literally sitting on my couch (and not gaining a single pound even after I'd lost 12 I might add) and listening to a naturopathic doctor who told me to cut out all chocolate, caffiene and alcohol because they are all adrenal stimulants, I finally started to feel a bit better. I ventured back to work and took things slowly and haven't had any more of the serious, debilitating attacks I experienced six months ago. That doesn't mean I haven't had symptoms. I still get tremors if I get excited, upset, scared or mad and the lymph nodes under my chin swell up and down randomly, I get nauseous, and still have a nagging pain in my left side, BUT it's nothing like what I was experiencing before.

The doctors decided to monitor the growth I have on my adrenal gland. The endocrinologist said they are known to grow and he predicts it will need to come out eventually, but that it needs to be bigger to justify the surgery because all my tests came back normal, which meant there was no hormonal reason to take it out now. I should add, 3 of the tests came back within 0.2 of the low end of normal...but apparently doctors aren't trained to address that. So now I wait until my next CT scan in November to determine how fast/if it is growing.

To be honest, I tired off all the doctor's appointments and gave up on the matter. For me, deciding to live with a health issue was easier than trying to get it addressed. The sad part of this is that I work in health care, so I found I was often battling with older male doctors who didn't like that a young, knowledgeable female was coming into their office with her own diagnosis. One doctor even asked me if I noticed my symptoms "after I had been doing some reading." He pretty much called me a hypocondriac without even looking at my previous medical history...which was nil minus 2 car accidents.

I guess the moral of the story is that doctors are people too. I find that most of the "specialists" I've dealt with have terrible bedside manners, egos the size of the world and don't take kindly to people who question their reasoning. In my opinion, that's the best way to learn, but who am I?

I wish you all the best with your medical adventure. Try to keep your spirits up and I hope your symptoms at least become somewhat manageable in the very near future. Keep us posted.

HEB

 
Old 07-02-2005, 12:18 AM   #10
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Re: Frustrated...adrenal gland symptoms.

Thnaks Heb12, that was very encouraging. Though I'm sorry you've had similar experiences, it helps to know that other intelligent, happy women front up to the same brick walls as me. As a reseacher, I have made an effort to educate myself about my condition, especially as I'm suffering daily and no doctors can take on the 24/7 responsibility of coping for me. For this reason I feel the need to be project manager of my own case. I'm concerned that my thoroughness will reflect badly on me when I see the neurologist in August, but I can only hope and pray that he will be open-minded enough to regard my symptoms in a serious light. I too sometimes feel like holding my hands up in surrender and saying "just forget about it, maybe I'm okay after all!" I've also noticed the considerable benefits of a diet low in sugar, without caffeine and alchohol, combined with regular exercise and relaxation. However I was practicing this healthy lifestyle for a year before my abdominal symptoms suddenly struck. In hindsight I realise there were warning signs which I didn't pick up on, like the strange neurological symptoms that began to mount and that I kept waving off as 'ditsiness'. At the moment I've suspended my studies and am also spending a lot of time on the sofa, watching Oprah and reading magazines! All the best,

Emmalouise.

 
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