Adrenal symptoms..gradual?
Posted , 7 users are following.
Hi everyone, just curious to see if anyone diagnosed with addisons or any other kind of adrenal dysfunction have had gradual symptoms or have all your symptoms came at once? My fatigue and weakness has to definitely be my worst symptom and has gradually got worse the past few months. The salt and sugar craving also came on randomly within the past 2 months. As far as the appetite loss and weightloss, that really hasn't happened to me. U still have an appetite, and I have lost about 5 pounds in 5 months without really trying. How many people with Addison's disease or other adrenal gland problems have had weightloss? Was it gradual? How much have you lost? Just wondering if that's just a symptom that not everyone gets?
Thanks in advance!
0 likes, 22 replies
miriam96203 Rach89
Posted
Hello Rach89
I started to feel very tired, weak, dizzy and nauseous about 4 years before I was diagnosed. I had a negative Synacthen test in 2012 and an eventual diagnosis in 2015. The symptoms came on quite suddenly (after some physical and emotional trauma) and then steadily but slowly deteriorated year by year until I felt very ill and quite despairing. It was the vigilence of an excellent Rheumatologist which saved me. After a cortisol test – the first one ever in all that time – she referred me immediately to endocrinology. I did lose my appetite and lost some weight but the main cause of that was longstanding IBS, maybe. After diagnosis I was so relieved to have a treatable disease that I felt much better for a while but still suffer from profound fatigue (I also have fbromyalgia and other probs) and have to pace myself very carefully. The salt craving is fine: I like salty food and the ADSHG recommends eating salt if you crave it (check that before you do!) Sugar craving isn't such a problem. My weight is normal but my blood sugar is high so I try not to succumb. Since starting the steroid treatment (hydrocortisone and fludrocortisone in quite low doses) I've put on a bit of weight but find I can reduce it if I eat less and keep exercising. That's the hardest thing: having been used to walking 10 to 15 miles on holiday and 6 miles/day normally, I can now only do 5 max and I'm pretty exhausted afterwards. For every busy, active day, I need to compensate with a day of doing very little.
I wish you well and hope this is helpful.
Rach89 miriam96203
Posted
Thanks so much for replying!
I just got a voicemail from my endocrinologist regarding me ACTH stimulation test. According to the Doctor, everything looked adequate" and "there appears to be no adrenal insufficiency"....waiting for my lab test to be faxed so I can take a look..not really sure how to feel I just feel like I'm starting at square one all over again and don't know what to do now...do you have any suggestions?? I know my cortisol is low, and had a high potassium and high chloride on my last test..something is going on and I wish I could find someone to help me...it's been so frustrating?
miriam96203 Rach89
Posted
Hello Rachel, I'm so sorry about your predicament and can well imagine how frustrated you feel. I do sometimes wonder if specialists interpret ACTH stimulation differently: a low reading that's within the normal range might be considered normal, for instance. From what I understand it's high potassium and low sodium levels that go with Addison's. I don't know about high chloride. There are so many conditions that have very similar symptoms to Addison's which is why it takes so long to diagnose. Is it worth asking the Doctor – is this the GP or endocrinologist? – how low the levels actually were after the ACTH stimulation? What specialists have you seen and is your GP approachable? I think that Addison's also goes with low blood pressure. Maybe that's relevant to you. It's a really tricky situation but do persevere. I waited what seemed like ages for a diagnosis. It's hard to live with uncertainty when you feel so unwell.
Rach89 miriam96203
Posted
At 9:50 am my baseline was 4.6
The range is 4.46-22.7 ug/dl
After 60mins of cortrosyn it was 18.1
The range for Normal cortisol says 30 mins >7 rise and after 60 mins >20 rise
It's kind of confusing to understand. My baseline is so close to the bottom and I don't really understand what it's saying about my 60 min. Blood draw...
I have seen my general doctor who also recommend a rheumatologist but I haven't been yet...and then my psychiatrist (which is the one who referred me to the endocrinologist)...idk what the.l next steps would be because of course they just tell me the results and expect me to just be fine about it...