Adrenal symptoms..gradual?

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!

what tests have you had x

Hi, I have pituitary disease and secondary adrenal insufficiency.

My symptoms were, falling asleep, stupid stupid tired. Fatigued, weak, no sex drive (and I love sex!) freezing cold ALL the time, brain fog, memory loss, anxiety, crying (all a nightmare as I was in the middle of doing a degree at Uni). And very quick weight loss, a stone and a half in about 8 weeks. Took for ever to diagnose me as the symptoms are so similar to so many other illnesses. Just a blood test for your cortisol levels should give some direction. Also with me, my blood pressure was taken sitting down (low anyway) and when I stood up and my blood pressure taken again straight away standing it dropped, it should go up?! Oh and very dizzy and just couldn't control my body temperature. Good luck hope you get sorted soon 🤞

Thanks for replying Lisa! I have had most al of the same symptoms as you. The fatigue/exhaustion has been unbearable..I get dizzy spells and get hot and start to sweat and other times I stay freezing especially my hands and feet. No sex drive, severe irritability...I had my cortisol tested back in April or May in the a.m and it was (low abnormal) then went back in July and had it tested again, this time in the late afternoon around 5:00 p.m and my cortisol was (high abnormal) my general Doctor did nothing but tell me to take some adrenal support supplements to see if that would help my symptoms..of course it did not...I went back about a month or so later and did a cortisol urine test 24 hours and my readings came back normal. The scale was 0-50 and mine was a 29..which is right there in the middle which makes sense because of my low morning and high evening cortisol. My doctor prescribed me Ritalin for my fatigue.....and told me to come back in a month..seriously?!!! In the meanwhile I had another doctor recommend a endocrinologist which I am seeing next week and I can hardly wait...my symptoms have gradually gotten worse. I now crave salty and sugary things. I haven't had the weightloss like other people really. I have only lost like 5 pounds since April or May, but idk if everyone experiences that or not. Doing research on the Internet has been difficult trying to find out a reason why my cortisol levels are reversed??...I have hadn't few other things tested on my general health panel blood tests but not really sure if they have anything to do with my adrenals or not. I know one of my tests my potassium was high.

3 cortisol tests

1 morning low abnormal test

1 afternoon/evening high abnormal test

1 24 urine cortisol test Normal

General health panel which had a few red flags not sure if they are any big deal. Potassium was high on one. My chloride was flagged, RDW,BASOS, and MCH I think were all flagged and maybe a few other.

My ACTH was normal was was on the low end

My tests were exhaustive!!

Numerous bloods

MRI on my pituitary to rule out tumours

CT scan with a dye for possible tumours

Scan on.my adrenals for tumours

Chest x-ray

Now I am medicated with hydrocortisone I have to have a yearly day curve to check my steroid level is stable.

And 2 times a year a short synathacen test to tell whether my adrenals have at all recovered and secreting cortisol unaided by steroids. Every 6 months an appointment with my endocrinologist..

I am surprised you have been prescribed ritalin, that would put your adrenals under pressure to secrete adrenaline and if they are struggling this can't be good? You need professional endocrinology input. Good luck because I truly do know how rubbish you are feeling. Look up on the internet for the Pituitary Foundation support group which I have joined and next one is in October in Salisbury, you're gonna have to push these appointments through. Good luck 🍀

There might be a certain level that tips the balance, however, with me it happened gradually till it was totally unlivable. I have had a gradual weight loss, but this far I don't mind. I also follow a strict diet and am not sure which is causing what.

Hi!

Yes, normally one would expect the symptoms to come on gradually unless say an Operation triggers a crisis. Mine took place over 18mths but diagnosis was more uncertain in the 1960s - it used to take 3 days for bloods to be analysed. A synacthen test should clarify matters v quickly. Sickness, diarrhoea and loss of appetite inevitably led to weight loss - 85kg down to 58kg on full diagnosis. One becomes weaker & weaker and one's resistance to any infection poorer & poorer.

The only other thing to say is that after starting on Prednisone ( Now Hydrocortisone) my weight v quickly increased to 100kg.

Hey Lisa,

I wanted to ask you what was your ACTH levels at? I have a ACTH stimulation test next week and was wondering if you did that test and what your results were.

Thanks!

Hi, I believe that normal cortisol levels are between 500-900 mine at diagnosis were around 370, Three years ago, after a short synathacen test. Since then they have been 0 (yes I did feel rotten!) and recently 200-370. My latest is 150, so even though i am medicated I still feel horrid.This is a hard horrible disease, I try my best to look after myself but it does affect my everyday life. I'm lucky in some respects that my children are 19 & 21, and my husband is supportive. I have to manage my energy levels very wisely especially in my work, I am a psychotherapist/counsellor!!! Hope u get answers soon.

I'm new to this whole Addison thing, but my fatigue and yucky feeling seen as to always be here, just some daydream worse. I have no problem in keeping the weight off could eat anything with salt.

How fast was the weightloss for you Kimberly?

Also when were you diagnosed? And how long did you have the symptoms before you were diagnosed?

I've dropped about a pound to a half a pound a day

I had gradual symptoms. It was 2 1/2 months before I was hit like a ton of bricks. I came off steroids for another health issue and a month later, got sick with a good cold. And then a month later was dealing with some stressful issues. My symptoms started with severe fatigue and after 2 months, progressed to dizzy spells, and then to fainting. My heart rate was also much higher than normal. My issue is considered a central adrenal insufficiency (not primary, like addisons). But the literature states the symptoms are the same, minus the hyperpigmentation and electrolyte imbalance. From what I've read, it's a gradual progression. I believe...the more rapid onsets are related more to my type of cause for adrenal insufficiency. Never hurts to get your am cortisol blood level checked. Good luck!

I'm sorry I should have read through before answering, I was just

So happy that someone responded. No fault of anyone on the forum

I've just been in what you call shock, fear and disbelief. I was only

Diagnosed one wk today. As if having lupus wasn't enough,the long drawn

Drawn out painful blood work didn't help the response I got. And I don't

Even understand half of what you guys are saying. I was admitted

For low heart rate (20) &out of control blood pressure 170/80,then

my cardiologist finds the problem. My GP has called me everything

From munchimers to depressed to just nuts. We have contacted an

Attorney because he undiagnosed, failure to diagnose. He had the beginning

of the lab work since last year and said, "one day it can say one thing another

day say something else" I wad on a feeding tube for a year because my weight was so

low. I have spinal stenosis so I leave in pain. But the thought he went

on a ski trip for the Hoildays and I was to fatigued to give my young son

A real Hoilday just burns me. I've been brought up to forgive but he

Was so busy knowing it all he made me miss planning my daughter's

Wedding,birthdays and everything had to be done by church

members. Does Addison disease just start or is always there then

something triggers it? Thanks and sorry for having to hear me out.

Kim

So sorry you are going thru all that 😔

I kind of understand what you are going through. I have had severe fatigue for the last 5-6 months now and seems like symptoms are only getting worse. Not much of an appetite and dizzy spells along with feeling weak and lightheaded... I haven't been diagnosed yet I am waiting to hear back about my ACTH test I had done a few days ago and I'm going crazy waiting. I was told by the nurses I could call and get my results but when I called this morning the receptionist said that my endocrinologist needed to review them first, which I thought would have been done by now..Ughh so frustrating...

You were asking if something triggers Addison's disease, and from what I have read, stressful situations and sickness can trigger a crisis, which kind of sounds like what you have been going thru but you have to already have Addison's disease in order to go into Addison's crisis.

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.

 

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?

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.