It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Addison's Disease Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 01-28-2013, 05:17 AM   #1
Newbie
(male)
 
Join Date: Jan 2013
Location: Canada
Posts: 3
Youreguy HB User
What does this sound like?

Over the last eight years I've been experiencing an increasing cluster of symptoms that seem to become mutually aggravated and alleviated.


Those symptoms include:

- Feeling incredibly dehydrated, my skin, eyes and especially my mouth. It is not alleviated by drinking although I feel compelled to drink as much as I can.

- Frequent urination.

- Having seisure-like muscle spasms and jaw clenching spasms after eating/drinking anything that is high in potassium.

- Recently having developed crippling neck pain that spontaneously occurs and leaves me without full range of motion for 2-3 days afterward, this has happened twice in three months.

- Muscles feeling weak and wobbly, especially in my calves, experiencing restless leg-type symptoms at times.

- Perpetual dizziness and fatigue, feeling foggy headed, unable to focus.

- Difficulty gaining weight regardless of caloric intake.

- Bizarre irrational bouts of temper, that is observed by others to be largely out of character, usually happening when my symptoms are at their worst.

- Inexplicable abdominal pain and bloating.

- Pain above my kidneys, especially on my right side

- Difficulty dealing with bright lights, constant pain behind/around my eyes; waking up in the morning they will sometimes look purple, although I was not hit or sleep deprived.

- Feeling tired regardless of hours slept.

- Observed by girlfriend to experience seizures during sleep, night sweats were not infrequent at times.

- Periods of stress or anger exhaust me for hours, often leaving me sore and physically incapacitated, sometimes inducing the aforementioned neck pain.

- Racing heartbeat, sensations of giddiness or "punch drunk".

- Greatly reduced cold tolerance, being a northwestern Canadian, it was nothing to consider -10c to be "sweater weather". Now it can be -5c and my body is chilled to the bone; my extremities sting like I have frostbite.

- Very poor circulation, overall low body temp, tingling sensation in hands and arms.



My girlfriend back in 2010 was concerned I had addison's disease.

I'm not quite sure what it is, however I am now getting to the point where slight bouts of illness send a great many of those existing symptoms spiraling out of control for extended periods of time.

It really doesn't feel bearable anymore, I've lost work as a result.


Outside of not really knowing what is wrong with me, I have dealt with a string of doctors who have been less than helpful to put it mildly.

The only up-side is that I am now under the care of a geneticist thanks to my girlfriend, and he has voluntarily agreed to do a chromosomal micro-array.

The only problem is that is going to take about eight months, and I feel like absolute crap.

My regular doctor is being very weird about this whole thing; she acknowledges that I am quite sick, but she won't do referrals, and won't do any more tests.

She offered to write a note telling my employer that I need to work reduced hours but there's no way they were going to accept that.

The only reason I'm seeing the geneticist is because my girlfriend is his patient and she asked him if he would take a look at me.

Normally it would take a long time to get a referral, but he apparently thinks there's something wrong, but isn't quite sure what it is.


Is there any likelihood I can convince him to pursue Addison's disease as a possible cause, or at least get my hormone levels checked?

Honestly, at this point the only other thing that seems to explain the dehydration type-stuff is Sjorgren's syndrome, and I'm absolutely terrified of that being a possibility.

Last edited by Youreguy; 01-29-2013 at 06:41 PM.

 
Reply With Quote
Sponsors Lightbulb
   
Old 01-28-2013, 09:22 PM   #2
Senior Member
(female)
 
Join Date: Jan 2009
Location: San Jose, Ca USA
Posts: 100
luvthesun HB Userluvthesun HB Userluvthesun HB User
Re: What does this sound like?

I'm sorry to hear that you are having to live with all of this. You really have a lot going on. However, it sounds like you aren't getting the right medical care, attention, testing, etc. First and foremost, I would find yourself a new doctor; someone who will take you more seriously and refer you to the right Specialists for appropriate testing, etc. In my opinion, this is really where you need to start.

You have so many different things going on, that even if you don't have full-blown Addison's Disease, I would imagine that you have some degree of Adrenal Insufficiency which ought to be treated with steroids. Many of your symptoms and stresses would be HUGELY helped by cortisone therapy. You absolutely need to see an endocrinologist to be tested for both your adrenal function, as well as for diabetes (the thirst and constant urination are big indicators)

Dehydration is a most common symptom of weak adrenal function, and you listed many others which are also often signs of AI: weight loss, inability to tolerate cold, inability to handle stress, exhaustion, erratic moods, inflammation in the body, stomach issues, etc.

I am not a doctor, but I've lived with Addison's for 8 years (probably longer but diagnosed 8 yrs ago), as well as digestive problems, blood sugar problems, sleeping problems, mood problems, etc. and I know that if you have weak adrenal function (i.e. - an inability to tolerate any sort of stressor in the body, whether physical or psychological), then many other aspects of your general health; body & mind, are greatly effected. If your adrenals are not producing adequate amounts of the stress hormones your particular body needs, then all of those "other" conditions (that you mentioned) take flight!

Again, adrenal hormones help your body combat stress. You've got to start with adrenal support before tackling all of the others, as often the others are more easily resolved, or resolve on their own if adrenal function is supported or restored.

There are a lot of critical lifestyle choices you ought to look at as well; diet, sleep, gentle exercise, etc. There's a great book, Adrenal Fatigue - The 21st Century Syndrome.. can't remember the authors full name, last name is Wilson. I HIGHLY highly recommend it. Dietary choices are crucial. Limiting or eliminating caffeine & sugars is the most important place to start. They both absolutely drain adrenal hormones. They may make you feel good momentarily, but you inevitably crash, and they plain and simply are wearing out your adrenal hormones.. leading to adrenal exhaustion.

And quieting your mind, trying your hardest to think positively (i know this can be hard when you feel so awful physically), but soooo important as there's a profound connection between mind & body, especially where stress-based illnesses are concerned. I am absolute living proof of this one. "Change your mind, change your life"... even when you feel like you're on death's door.

Okay my friend, I'll get off my soapbox. But please try to get better help. I know it's out there for you .. you just haven't come across it yet.

Keep the faith.

Sincerely,
Mollie

 
Reply With Quote
Old 01-28-2013, 10:15 PM   #3
Junior Member
(female)
 
Join Date: Jun 2007
Location: chico, ca usa
Posts: 23
1happycamper HB User
Smile Re: What does this sound like?

First of all, Get yourself another PCP fast. If your Dr has a problem with a referral at this point, forget that.

You should not and do not have to wait to feel better. Everything you've described sound's like textbook adrenal exhaustion and you could feel so much better on the right regimen without tons more testing. Just be seeing a knowledgeable hormonal Dr in your area that would start you on a low dose of cortisol for most of the problems you've shared thus far.

I too have been soooooo sick, no energy, muscle weakness to the point of being able to do things in like hour increments due to no ability to do more. Lightheadedness, temp is 95 everyday, salt cravings, not gaining weight, horrible hypoglycemia, sleep all night and still cannot get out of bed. Can't think, foggyheaded is an understatement.
Since I started 10mg of cortisol 2 to 3 times a day WHAT A DIFFERENCE>

I found out I was adrenal insufficient when my GYN Dr did a thyroid and hormone panel and started me out on armour and if you are treating your thyroid with any adrenal illness you will crash and burn BAD!.. I finally stopped the armour and I am almost feeling like myself again in a few days time only!!
You surely do not have to feel like crap for any longer than necessary..
Best to you friend..

Quote:
Originally Posted by Youreguy View Post
Over the last eight years I've been experiencing an increasing cluster of symptoms that seem to become mutually aggravated and alleviated.


Those symptoms include:

- Feeling incredibly dehydrated, my skin, eyes and especially my mouth. It is not alleviated by drinking although I feel compelled to drink as much as I can.

- Frequent urination.

- Having seisure-like muscle spasms and jaw clenching spasms after eating/drinking anything that is high in potassium.

- Recently having developed crippling neck pain that spontaneously occurs and leaves me without full range of motion for 2-3 days afterward, this has happened twice in three months.

- Muscles feeling weak and wobbly, especially in my calves, experiencing restless leg-type symptoms at times.

- Perpetual dizziness and fatigue, feeling foggy headed, unable to focus.

- Difficulty gaining weight regardless of caloric intake.

- Bizarre irrational bouts of temper, that is observed by others to be largely out of character, usually happening when my symptoms are at their worst.

- Inexplicable abdominal pain and bloating.

- Pain above my kidneys, especially on my right side

- Difficulty dealing with bright lights, constant pain behind/around my eyes; waking up in the morning they will sometimes look purple, although I was not hit or sleep deprived.

- Feeling tired regardless of hours slept.

- Observed by girlfriend to experience seizures during sleep, night sweats were not infrequent at times.

- Periods of stress or anger exhaust me for hours, often leaving me sore and physically incapacitated, sometimes inducing the aforementioned neck pain.

- Racing heartbeat, sensations of giddiness or "punch drunk".

- Greatly reduced cold tolerance, being a northwestern Canadian, it was nothing to consider -10c to be "sweater weather". Now it can be -5c and my body is chilled to the bone; my extremities sting like I have frostbite.

- Very poor circulation, overall low body temp, tingling sensation in hands and arms.



My girlfriend back in 2010 was concerned I had addison's disease.

I'm not quite sure what it is, however I am now getting to the point where slight bouts of illness send a great many of those existing symptoms spiraling out of control for extended periods of time.

It really doesn't feel bearable anymore, I've lost work as a result.


Outside of not really knowing what is wrong with me, I have dealt with a string of doctors who have been less than helpful to put it mildly.

The only up-side is that I am now under the care of a geneticist thanks to my girlfriend, and he has voluntarily agreed to do a chromosomal micro-array.

The only problem is that is going to take about eight months, and I feel like absolute crap.

My regular doctor is being very weird about this whole thing; she acknowledges that I am quite sick, but she won't do referrals, and won't do any more tests.

She offered to write a note telling my employer that I need to work reduced hours but there's no way they were going to accept that.

The only reason I'm seeing the geneticist is because my girlfriend is her patient and she asked him if he would take a look at me.

Normally it would take a long time to get a referral, but he apparently thinks there's something wrong, but isn't quite sure what it is.


Is there any likelihood I can convince him to pursue Addison's disease as a possible cause, or at least get my hormone levels checked?

Honestly, at this point the only other thing that seems to explain the dehydration type-stuff is Sjorgren's syndrome, and I'm absolutely terrified of that being a possibility.

 
Reply With Quote
Old 01-30-2013, 12:51 PM   #4
Newbie
(male)
 
Join Date: Jan 2013
Location: Canada
Posts: 3
Youreguy HB User
Re: What does this sound like?

Thank you both for your replies, it is definitely some food for thought.

I've had it with my current GP, although I believe their reason for stonewalling me on referrals might have to do with past interactions with previous physicians.

Around 2007 my physician at the time was treating me for a series of health problems that occurred in short succession.

He was more than willing to prescribe drugs for each individual symptom, however refused to discuss the problem at length.

Finally, in frustration I told him I was sick and tired of taking drugs for each little thing and insisted there must be a systemic cause behind all of these symptoms happening at once.

He became very defensive and snapped at me saying "I have an autoimmune disorder and the happen for no reason at all".

I was shocked, and took his hostile reaction and irrational response to imply he wanted nothing to do with it.

After that point I simply stopped bothering to see him.

In 2009 I experienced a series of strange neurological problems, this is when a lot of the seizure type incidents started to occur.

In 2010 I fell extremely ill and I was in bed for four days with alternating chills/fever and tremors. After that initial complication, I remained quite unwell for three months afterward.

I saw a new doctor at this time, and initially I was hopeful he was going to take my health concerns seriously.

He tested me for HIV, Hepatitis, and a whole swath of other scary diseases yet nothing came up.

After which he presumed I was overreacting in spite of my being apparently ill.

He essentially told me that if I didn't accept a prescription of antidepressants, he would refuse to help me further.

I did not return to that doctor.

In mid/late 2010 I started noticing strange joint looseness and pain, it didn't greatly impede by ability to function, however it was cause for concern.

Around mid 2011 I had my wisdom teeth removed, something that was long neglected, and I became extremely ill as a result, the doctors were quite surprised that I was able to develop such an infection.

I was placed on an initial and then extended dose of antibiotics, after which I started to feel better.

Around that time I started experiencing symptoms of fatigue and dehydration worse than I had ever previously experienced.

I tried consuming electrolyte drinks to alleviate the symptoms, which to an extent helped prevent them from getting worse, but never improving them.

This is when I had sought out another doctor, the current one I am seeing.

During the time I've been seeing this physician, they have administered tests in which my thyroid has been "off", but not overtly dysfunctional.

That is, they don't believe that my thyroid itself is the cause of my problems.

I have heard that when your adrenal system is lagging, the condition can cause other hormone producers such as your thyroid to become taxed as well, this seems perfectly concurrent with what I'm experiencing.

Its interesting to note that 1happycamper has also experienced body temperatures hovering around the 95 degree mark, which is usually where I'm at when I start feeling really awful.

Again, to the doctor's credit, they did take the concerns of my joint pain and looseness seriously, and tried to get me to see a rheumatologist, and I was supposed to get a cortisol shot.

I was optimistic, until the actual appointment in which the rheumatologist was completely incredulous that there was anything wrong at all, and refused to administer the shot altogether. Its really frustrating to think that I might have had some insight as to what was troubling me and was denied that opportunity.

I believe there's a sort of conflict of interest given that the first physician I had problems with is unfortunately on the same primary care network as my current one, and after a certain point they simply refused to help me at all.

My province over the last year or so has been scandalized with accusations that doctors are being bullied into not advocating for patients, whether its for financial reasons, or to prevent humiliation I cannot say.

Its going to be quite difficult finding a doctor outside of my primary care network if that first doctor I had seen has put something on my file effectively discouraging other doctors from pursuing a diagnosis.

Strangely enough I actually saw a doctor that was filling in for my GP a few months ago that was insistent that I be screened for lupus, further lending credibility to the claims that I have some kind of autoimmune problem.

At this point I'm hoping I can convince the geneticist, to either lean on my GP a little, or to refer me to another specialist.


Anyhow, once again, thanks both of you for your replies.

 
Reply With Quote
Reply Reply




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 06:47 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!