8 Years Son - Addison's - Skin Pigmentation, Black Freckles And Tired


Aug 4, 2008

My son ryan aged 8 has been diagnosed with addison's, this has only been 2 weeks, tell tale signs are skin pigmentation and black freckles, he was poorly but has picked up but reluctant to be very energetic and seems to be tired easily, as this is early stages not sure if this is normal maybe someone can advise, he won't walk so its car or taxis to everywhere, he also has heart murmur, we are still awaiting test results to see why glands stopped working,

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After talking to my GP, he had me increase the D supplement to 4000 IU/day. He also wrote me a new referral to a different rheum. This one specializes in seronegative arthritis.

I try to be an informed consumer. Current rheum just wants to throw more pills at the issue without getting to the root of it. It seems like if I go in with a fibro dx, everything must be fibro. How do I approach this new appointment (in September!!) to finally figure things out? This new doctor will be in the UH system as are all my other docs. I think she'll have access to previous lab results, if not I can pull them up in my EMR.

I could use words of wisdom, advice, a kick in the butt (if necessary), etc.

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I can't wait to be able to sleep any position I want especially on my tummy. 10 days till due date.. I know I'll be able to sleep better whe. Babe is here eve with having the nightly feeding.

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Lupus :: Tired Of Being Tired All The Time

i am new to these discussions but I do know how many of you feel. I have mentioned that I was diagnosed with mixed connective disease, lupus, fibromyalgia and who the hell knows what else. I can't work becuause if I sit to long, my legs start falling asleep. If I stand to long, my legs start aching. I feel exhausted all the time like when I wake up in the morning, I could just as easily go back to bed and sleep my entire life away. I wish there was something in a bottle that gave you energy. I miss my old life when I used to work out all the time and had enough energy for 10 people and then one morning I woke up and couldn't bend my leg back, it just wouldn't work so my family doctor sent me to a rheumatoidologist and he is the one that took all my blood from my body, that's what it feels like sometimes, and gave me the great news of having all these diseases but no medication seemed to work. I went to another rheumatoidologist and he put me on Lyrica which helps my upper joints but my legs were in such pain I felt like it was to much to even walk down the hall. Now along with my family doctor, my rheumatologist and my pain doctor, I take Lyrica for joint pain and oxycodone and fentenal patches for pain, especially when my mixed connective disease starts up, it just brings my systemic lupus to life and I get the butterfly rashes mostly on my upper arms which adds to my stress which makes my fibro flare up and gives me pain in my legs and then it just starts over. It seems to be a cycle especially when it's hot. I also start sweating like I was in a sauna all day just on my head and face. People look at me like did you know your sweating like a pig. It's embarrassing but I don't know what to do about that so I put ice on my head at night to keep my head cool so I won't start swearing. I've never had that problem before but only since these diseases came and decided to stop on my little doorstep. I am a true believer that stress can cause all sorts of bad things including diseases. I am just going to try to start yoga but I have to absolutely force myself to do this. I start next week. The worse thing I could have done 12 years ago when I was diagnosed with all this crap was to stop exercising.

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Addison's :: Understanding Low Cortisol

About two months ago, I had mentioned to my personal trainer that I was feeling very tired with low blood pressure. This had been going on for a couple months, on and off every couple of weeks. He mentioned that it could be cortisol-related.

I went home and did a lot of researching about the issue and found that I matched a lot of the symptoms of low cortisol. I went in to see my doctor a couple days later. When I mentioned that I thought it was low cortisol, he said that the adrenal glands usually do the job and that it probably wasn't that. He tried to prescribe me anti-depressants which I declined, and then ran a few blood tests, along with an AM only cortisol test (it was about 11AM).

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I took a multivitamin for a few weeks. I had also been congested in the back of my throat for two months, so I went back to see the doctor if he could do anything about that. He determined it was a sinus infection, and prescribed Cefuroxime for two weeks to get rid of the congestion. I asked if that could help my fatigue to which he said it could help.

So I finished the two week round of antibiotics, and now it's two weeks later and I still feel horrible. Here's the main things that I am experiencing. I really don't feel depressed and feel like I enjoy life a lot.

- Inability to wake up for work. I wake up around 9AM, and feel like I haven't slept at all. I previously had to wake up around 5AM to get everything done in the morning

- Feeling of drowsiness through the morning, up until noon. Sometimes like today it will last all day.

- Extremely low blood pressure while standing. This starts around 2PM every day and lasts until around 5PM. I usually don't fall down and just black out, but recently I fell because after standing up and injured my knee.

- Fluctuations in appetite, I will eat a TON of food with out gaining any weight (5-6 meals a day), but I exercise a lot so this isn't super concerning. My weight is constant.

- Itchy red eyes when I wake up

- Exhaustion when sitting, feels like I should lay down but not low blood pressure

- Hypoglycemia, my blood sugar is really low in the mornings, and then again in the evenings before dinner. Between that it feels fine but I don't do regular testing on this to know for sure.

Also I am 20 years old male and a competitive cyclist. I eat very healthy foods (although a lot to keep up my activity). I live at a high altitude (7,400ft).

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Addison's Disease :: Interpretation With Hypothyroidism

I am 38 and have Hypothyroidism. I recently had a cortisol test and my initial results came back at a level of 210. I was told that the normal range was 150 - 650 ( or thereabouts ) and as my test was at 9am these levels should be much higher.

I have been refereed to see a hormone specialist but am just curious to know if anyone had an initial level of 210 at peak time and didn't have Addison's. Or, indeed they did have it?

Could it be adrenal fatigue? which is why I went to the drs as I read about on a thyroid website.

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Hydrocortisone For Primary Addison's Due To Pheochromocytoma

My daughter is taking hydrocortisone for primary Addison's due to Pheochromocytoma. Does anybody know if she should be taking something to help prevent osteoporosis??

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Addison's :: Craving For Salt And Always Thirsty

I'm wondering what the "typical" dose is for fludrocortisone? I've been taking .1 mg for past several years, but doesn't seem like it's doing anything. I'm thirsty all of the time, and am consuming liquids all day it seems ... and yes, I add sea salt to my water. Could it be that this gets worse the longer you live with the condition, and so may require more of the med to help with sodium retention? I'm clearly not retaining extra water weight as I'm extremely thin (87 lbs). My doctor doesn't seem to have a clue and just tells me to keep drinking water. I pretty much don't rely on doctors anymore with this condition. I've grown tired of educating them about Addison's/ Adrenal Insufficiency. So I figured I would ask here and see what others take and if anyone has had to increase their fludrocortisone.

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Addison's :: What Was Your Cortisol Level When Diagnosed

What was your cortisol level when you were diagnosed with Addison's? I'm guessing it was 0.

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I am being tested for Addison's Disease and just received the below test results. I don't see my endo until 12/4/13, and wondered what the results might indicate. Any thoughts?

Historically I presented with low Cortisol and High ACTH.

* After a Dexamethasone Suppression test my blood cortisol was less than 1mcg (whatever that means)

* 17 Alpha Hydroxyprogesterone was 849

* ACTH Stim test results:

Baseline- 10mcg
30 min.- 13mcg
60 min.- 15mcg

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High Sodium Levels And Addison's Disease?

Curious if anyone knows what it means to have high sodium levels and Addison's disease? My sodium levels came back at 238 I've had more testing done but this one was the more extreme in numbers.

Anyone else have high sodium results?

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Thyroid :: Tired Of Being Tired

Here's a brief background and symptoms I've been having. I've been a migraine sufferer since my preteens. Mainly migraines with aura but also morning headaches etc. about 7 yrs ago I gained 40 lbs very quickly over a 1-2 yr period and was exhausted all the time. I went to pcp office and saw a dr other than my own. She commented on my weight gain like she was appalled and asked if I was depressed. I did not feel depressed just frustrated mostly. She did a tsh test and said it was normal. I was also having what I was told was possibly ibs (mostly d but also c) and have dealt with this for the past 7 yrs as well. Skip ahead a couple years I noticed a correlation between the ibs and eating gluten products. I visited with my dr and he had me get a celiac panel. The results came up negative. I should also mention I was eating gf before the test so wonder how that may have effected the results. Fall/winter 2011 I was extremely fatigued, sore joints, muscle aches, hard time falling and staying asleep, noticed cold bothering me more ( I live in New England) so in January I found a new dr near where I lived. He basically said that it may be seasonal affective disorder even tho I told him I really didn't feel depressed just exhausted. After basic bloodwork as well as tsh and the wrong vitamin d test he said all was normal, get some rest. All I could think was gee thanks. So I saw another dr shortly after who was great but he tested me for Lyme and lupus which were both neg and also the correct vit d test which showed I was at a 6 and severely deficient. After a few months 50000 iu and then continued 1000 iu daily with some results of less fatigue. A couple months ago I started to feel the extreme leg cramps again, joint pain especially in knees and wrist, extreme fatigue as well as new symptoms of ringing in ears, dry scaly skin that I can literally rub off. I have always lost a lot of hair with showering and brushing but it seems like more lately. I called my pcp and asked for another vit d test thinking it may be related. come to find out it was a 17 so not as low as before but still low. I've done a little research and I feel like it could be hypothyroidism but I am unsure exactly what I should request for tests from my dr. I don't want to waste money on something if it doesn't seem needed. Any advice would be greatly welcome. I am just tired of being tired and frustrated.

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