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Crohn's Disease Forum » General IBD Discussion » Adrenal insufficiency / Addison's Disease?


 
07-29-2010, 10:00 AM   #61
Cat-a-Tonic
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I finally got an answer from my GI just this morning - he also thinks the results of the latest Addison's test were normal. I asked about a referral to an endocrinologist and I was told that would have to be done through my GP. So I'll be calling my GP's office today to ask about that (I hate doing that - they always put me on hold and they have the worst hold music - it's literally one song repeating over and over and over, drives me crazy!). So that's where I'm at, still fighting with the medical system to get some form of answers - in other words, just another typical day for me.

I need to get my hair colored soon too. I'm only 30 but I've started to go gray - not sure if it's another side effect of being ill, as my parents didn't go gray until their late 40s/early 50s. Of course my parents are both healthy too, so who knows.

Have you gotten your endoscopy results back yet? Less than 3 weeks now until my endoscopy. I'm sure it won't find anything, but at least that will completely rule out celiac and I will be able to check that one off the list of possibles. I'll let you know what I find out from my GP about getting a referral. Hope you are well and that the pred continues to work for you.
07-29-2010, 11:50 AM   #62
bushydougie
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I'm sorry you're no further forward Cat. How very frustrating. Do you still feel it could be Addisons then?
I don't have my results yet. Should be middle of next week. Also got an earlier appointment with my GI the week after. He wanted to see me in 3 months (I was v disappointed it was going to be so long) but when I phoned up about the pred he brought my appointment forward. I'm guessing he wants to check how the pred is working and why it's working.
I think you should try and get a hair appointment asap. It will be good for you to get a bit of pampering!
07-29-2010, 02:09 PM   #63
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Hi Cat

I know the feeling. I went through months of being called a hyperchondriac before I finally got my Addisons diagnosis (including my GP - who I eventually filed a complaint against).

I did many months of research during my battle to get diagnosed, and I came across something called "Unstable Pupil Reflex". It is a little test you can do at home in front of the mirror in a dark room, with a torch. You must be in complete darkness for at least 2 minutes, before switching on the torch, in front of the mirror, to see what happens to your pupil.

My pupils reacted exactly as they did in this youtube video - which can indicate something wrong with your adrenals. I have spoken to people in the medical profession, and they say this test has no scientific basis. But, there is no harm in trying. My pupils behaved like the one in the video, and I have Addisons.

The link to it is here: youtube.com/watch?v=OAkftY6BZS0

Let me know how you get on.

Best wishes
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07-29-2010, 03:06 PM   #64
Cat-a-Tonic
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Sam: I do feel like Addison's is definitely still possible, because of the fact that I have low sodium and get low blood pressure attacks frequently, and because pred works, and because I do feel like my test results are confusing and not "textbook" normal results. I know that the pred could be IBD or it could be Addison's or it could be something else (not sure what though!). I just wish things were clearer. I've got to talk to an endocrinologist and maybe that will provide some answers. I didn't call my GP yet to get a referral because I had a bad day at work - found out one of my co-workers (the second co-worker this month) has cancer. So I was sort of depressed and stressed about that and didn't want to deal with the stress of calling the doctor. I'll call tomorrow for the referral.

Glad to hear you got your GI appointment bumped up! I hate waiting months just to see the doctor. They tried to pull that stunt on me when I was scheduling my colonoscopy - I called them in March, and they said, "Oh, we can get you an appointment in June." I was so frustrated but thought that I would just have to wait. But after a few weeks of waiting and being in a lot of pain and having a lot of d, I called them back in tears and said I just couldn't wait that long. They had said at first that they had no cancellations and no openings, but after they heard me crying and pleading, they "suddenly" had an opening the following week. So that was great, even though the colonoscopy didn't find anything. I was just glad to get it over with and didn't have to wait any longer!

Oregon: Thanks for the link - I'm at work right now and youtube is blocked from here, but I'll definitely check it out when I get home tonight. I'll let you know how it goes! Thanks again.
07-30-2010, 06:00 AM   #65
bushydougie
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Well if that's what you think then keep pushing for answers Cat. It can be so draining though can't it. I am not surprised that you didn't want to do it yesterday. What sad news for you. Why do these things always seem to happen together? I hope that your collegues get the treatment that they need. I am still hopeful that the red bumps they found during my gastroscopy "mean" something at last. I was just pleased that they eventually found something not quite right (I know that sounds crazy but I also know that you'll know what I mean!)
Well if you can get an appointment with an endocrinologist and get the gastroscopy done then at least you'll have both posibilities covered! Lets hope that there are answers coming your way very soon.
I hope that you are not too stressed and unhappy today
07-30-2010, 08:41 AM   #66
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Hi Cat, hope you find answers soon!!

Oregon, my pupils do the same thing, I actually know the person who made that video and she is a gem, she knows her stuff.
07-31-2010, 06:29 AM   #67
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Cat: Thanks, my trip was lovely! I had a great time with old friends. I brought my special crispbread, so I wouldn't starve when the others had pizza. And I had a glass of wine, and I was fine the day after! Curious to hear your news, as soon as you get them. Has your brother arrived yet?

Bushy: Isn't it great to have a haircut, and feel beautiful after? I just recently did the same, and it made me feel tons better. My hairdresser curled my hair after the haircut, and I felt so pretty! What's your colour?
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07-31-2010, 07:19 AM   #68
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Oregon: Last night I tried the thing in the youtube video - sat in total darkness for 5 minutes (I know you said 2 minutes but I wanted to be sure I had been in the dark long enough), and then shined a flashlight into my eyes and looked in the mirror to see what happened. Well, my pupils didn't waver and change like in the video, they were unmoving. So I'm still just as confused as ever about what's wrong with me!

Sam: Yes, it is incredibly draining trying to get answers. I can't even count the number of times I've called my GI and GP - it's dozens and possibly hundreds at this point. I didn't call for a referral yesterday either because I was just so tired of dealing with this stuff. And now my eyes don't do the pupil thing, which is making me second-guess things... I might just wait until after the endoscopy and then if that's normal maybe I'll see an endocrinologist. Things are further complicated because it's getting expensive to keep seeing doctors and having tests! It's such a problem because I need to keep working to pay my bills and to continue my health insurance (I get my insurance through my work), but I need to keep going to doctors so I can figure out how to be healthy enough to keep working so I can pay my doctor bills...

Sophia: My brother flew home last night, and he's with our mom today taking care of some errands with her, and he'll get here to my house tomorrow afternoon. It took longer than we thought for him to get back because he banged up his knee and it got infected, and he wanted to make sure it got drained & healed before he left the military. (He had his health care 100% covered by the military while he was there, but once he left he now has no health insurance, so it was important to get that done while he had coverage.) So he'll be here tomorrow. I'm excited, I haven't seen him in almost 2 months.
07-31-2010, 07:31 AM   #69
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Morning Cat!! I see your catch 22 is ongoing. Good luck with the docs and the bro!!!
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07-31-2010, 07:37 AM   #70
Cat-a-Tonic
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Thanks Mark! Yep, still no answers. I'm having an endoscopy on the 16th, and I'm not expecting it to show anything, but at least if that comes back normal it'll rule out celiac 100% and that's one thing I can cross off my list of possibles (and my mom, who is 100% convinced I've got celiac, can finally stop harassing me about my gluten consumption). After the endoscopy I think my GI wants to try a contrast x-ray (he also wants to do an MRI but that's mostly to check my liver, so I'll hold off on that one for now).
07-31-2010, 08:01 AM   #71
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Hello Cat just a though I was having. Where do you work and what do you do for work. Seeing how 2 of you co workers have come down with cancer and now you being as sick as you are have you considered something work related making you feel this way? Or maybe something environmental? Just a thought I wish you well.
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07-31-2010, 11:29 AM   #72
Cat-a-Tonic
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Hi TheEnd, I don't think it's my workplace or environmental factors that are causing all the illness. I work in an office, I've got a desk job. So we're not working with chemicals or anything weird like that. My one co-worker has throat cancer, which is most likely because he's a long-time smoker. My other co-worker has prostate cancer (obviously I'm not worried about that myself since I'm a female). I think it's just a coincidence and maybe our conditions are aggravated a little by workplace stress or something like that.
07-31-2010, 11:56 AM   #73
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Hi Cat I hope you get a diagnosis soon, it's horrible when it gets dragged out like this! Fingers crossed that you get a definitive answer soon
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07-31-2010, 12:08 PM   #74
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Ya I understand Cat. It just stinks being sick. I am sick 90% of my days also but at least they know what's wrong with me. I pray they figure it out for you soon. Cancer is out of control we have lost 3 family members and 2 others have be told they also have cancer. I am starting to believe we are all going to get it.
07-31-2010, 03:46 PM   #75
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Just dopping by to say hi

Always thinkin about you cat.

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08-01-2010, 01:59 PM   #76
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I'm sure you must be very excited about your brother coming today! Enjoy your time together!

xoxo
08-02-2010, 01:09 PM   #77
Cat-a-Tonic
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Thanks Silver, TheEnd, Dusty, and Sophia. No new news to report - I'm holding off on trying to get an endocrinologist referral until after my endoscopy (2 weeks from today). I am just exhausted and need a break from calling my doctors. I'm just going to take things easy and try to relax. Assuming the endoscopy doesn't find anything, I'll see about pursuing an endocrinologist referral then.

Sophia, my brother moved in yesterday and so far so good! He's also taking a couple of weeks to rest and recover from his military experience, and then he'll start looking for a job, and then when he's got a little money he'll look for an apartment of his own. I can tell the military has done some good for him, as he used to sleep until noon, but today he was up at 6 AM and he went for a 2 mile run. I can tell he's glad to be home, he was happy to be able to watch TV and use a cell phone again.
08-02-2010, 02:41 PM   #78
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I'm glad to hear that you are at least trying to relax a bit Cat. I know how hard that is when you don't have a diagnosis! Hopefully having your brother around will keep your mind off things a little bit.
I do hope that youre endoscopy finds something to point the doctors in the right direction. I'm still waiting for my results and see my GI next week.
10-22-2012, 09:32 PM   #79
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I have Addison disease. I took the short test, and my levels looked normal and I was told I was a ok. But when i took the long test where they gave me shots of adrenalin every few hours, and i still slept through them, Addison disease showed up.
Make sure you take the long drawn out test. The short one can lead to misdiagnosis and you have had plenty of that.
I have secondary Addison. Plus, my potassium levels were not like they should be. I was low on K instead of high. Turns out i have a kind of birth defect where a tube leading from my kidneys is too big, and K molecules were escaping through it.
Now, lately I've experience a shedding of the mucus membrane of the large intestine, and bloody stools. this sounded like Crohns. I see my endocrinologist next Monday and am anxious to find a resolution to this. I have always heard that Crohns and Addison were related and can follow each other in diagnoses or progression of said disease.
Good luck to you, and to me.
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10-22-2012, 09:52 PM   #80
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Welcome to the community maidensolo. I hope you don't have Crohn's

If you'd like to introduce yourself in our Your Story forum located here, we'd love to properly welcome you.
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