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Addison's Disease Message Board


Addison's Disease Board Index


Hi
I was wondering if someone could help me figure out what may be going on in terms of my health. I am a 15 year old female high school student who has dealt with various illnesses over the past 7 to 8 years. It all started when I began to gain a large amount of weight at the age of 8 without changing my diet or amount of exercise. I was diagnosed that year with hypothyroidism and was put on medication that resolved that issue over the course of about 4 years. My levels were spot on as well as my weight and growth develpment. I lived life as a normal happy kid until my seventh grade year. It was during the duration of my winter break that I got a common throat and ear infection. Unfortunately, this infection did not go away for three weeks and I began vomiting several times throughout the day. I had a scope to observe the structure of my stomach and everything was fine. It was later determined that I have gastroparesis. I learned to manage this disease over the next couple years but I had always felt run down and fatigued. While this was going on, my thyroid levels had been tested numerous times only to find out that they were okay. It wasn't until labor day of last year (my sophmore year) that I began to have real issues. I experienced occasional syncope and developed orthostatic hypotension. Some days I could not sit up nor stand up without vomiting or flashes of tunnel vision. I have adjusted my diet and drank plently of fluids as well as salt but nothing has worked. During this time I've had minor weight loss as well as a slight loss of apetite. I've had new mood swings that are often uncontrollable. I often wonder if this is just an age thing and becoming a teenager but they are effecting my daily functionality severely. In addition, I've always had unexplained anxiety since my hypothyroid diagnosis as well as constipation. I'm experiencing cold intolerance and overall weakness. I'm looking for thoughts on whether or not you think this could be addisons. I have about 80% of symptoms excluding the hyperpigmentation. I have incredibly pale skin due to me not feeling well. The only signs of hyperpigmentation is probably on my legs. I often get unexplained bruises and scars that darken significantly.

I am currently waiting for ATCH test results to come back. I have seen every other doctor there is to see. All have said there may be something going on but could do nothing to help in their department.

I am curious to see what all of you think.

What kind of symptoms did you guys experience before being diagnosed?

I apologize for the long post. Thank you for reading and responding! I appreciate it more than you know
Just thought I'd take a minute to say a quick hello. I've been experiencing frighteningly similar symptoms to you for about two years now - constipation, fatigue, sensitivity to the cold, abdominal pain/bloating/distension, the lot. As with yourself, however, I don't seem to have any signs of hyperpigmentation. I've also lost about 12kg in two months and been experiencing frequently low blood sugar, in addition to waking in the night to go to the toilet & light-headedness/blurred vision/blackouts. It really is so frustrating, because, as you said, it really does affect general day-to-day living. I used to swim train 18+ hours a week, but now I can hardly get out of bed. My endocrinologist kept putting it down to coeliac disease but the tests always came back negative, so I've since had all the cameras and scans (bar MRI). Still nothing as of yet. Bloods are all normal too, besides slightly low calcium and folic acid levels. Think I probably also ought to mention that I've tried the low FODMAP diet for about eight weeks now and still seen little to no improvement. I thought it was also quite interesting to read your post as I too was diagnosed with hypothyroidism, six years ago (when I was 11), after a bout of 'suspected swine flu.' It took a while to get there, but my thyroid function has supposedly been within the normal range for quite a while now, despite feeling so ill. I'm also due to have my ACTH test this week and a glucose monitor inserted, so hopefully that should shed some light on things. I would be really interested to hear how you're getting on and hope the docs can give you some answers soon. All the best!
Hello!
So glad to here from someone in regards to figuring out this crazy thing called chronic illness. It has been a few months since I have posted to this forum and I'm glad to say that we have found a correct diagnosis for me. Initially we thought Addison's, hence the reason I was here. However, with a few more doctors visits it was determined as pots syndrome. This explains the fainting and brain fog I had been experiencing frequently. Since then, I have gotten back on my feet a little; however, I'm still homeschooling. I hope that you can come to some sort of conclusion about your illness. I know how frustrating it can be to just not feel well for so incredibly long. I wish you all the best and would love to here if you figure something out. Best wishes.
I posted on the off chance, seeing the date of this thread, but I'm so glad I did now.

Chronic illness - it's a bit of a crazy ride, isn't it? That's always good news! Well I'm glad they've identified the reason for you displaying your symptoms, because at the end of the day that's almost half the battle. Definitely for me personally, I struggle with not knowing what's going on and what I can do to prevent it. So are you able to manage your condition any better now you've got a diagnosis?

Funnily enough, I went in to hospital as an outpatient for my synacthen test Wednesday morning of this week and haven't left since. The cannula went in, but before carrying out the test my consultant decided to do a quick BM (since my sugars had been a little low earlier on in the day). It's a good job he did really, because the readings came out at 1.7/1.6 mmoldm^-3 and I went into adrenal crisis. Samples later came back from the lab as low as 1.2

So, to cut the already long story short, since I didn't seem to have a sufficient natural response I'm now on a tri-daily dose of hydrocortisone. And if I'm honest, in conjunction with the contents of my IV for a good day and a half/two days, it seems to have been working absolute wonders already. I've had natural bowel movement TWICE now, which is a crazy marked improvement. As is the absence of any sort of abdominal pain and the familiar feeling of just being downright rubbish. We're still waiting on a few more urgent tests to get a proper diagnosis, but it's looking as though it could be either Addison's or secondary adrenal deficiency.

Thank you so much for your kind words, and also again for getting back to me - it really does help to talk to someone about it sometimes. I hope you continue to make progress your end, and wish you well :)





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