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
jazzyanne Rach89
Posted
Rach89 jazzyanne
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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
lisa20030 jazzyanne
Posted
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 🍀
lisa20030 Rach89
Posted
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 🤞
Rach89 lisa20030
Posted
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.
Rach89 lisa20030
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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!
lisa20030 Rach89
Posted
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.
hanny32508 Rach89
Posted
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.
1941john Rach89
Posted
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.
kimberly30146 Rach89
Posted
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.
Rach89 kimberly30146
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Rach89 kimberly30146
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kimberly30146 Rach89
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I've dropped about a pound to a half a pound a day
adrianne75629 Rach89
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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!
kimberly30146 Rach89
Posted
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
Rach89 kimberly30146
Posted
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.
kimberly30146 Rach89
Posted
Hope the news is up when I get it. They are never ready when you'raiting
On results. Reminds me when u drop of meds. To be filled and
They say it will be 10min. So you wonder grounder feeling like carp
Then you go back and they say, oh you were waiting for it! I'm just so
Of people making assumptions, putting them in your chart where
You have to fight to get it removed.
Rach89 kimberly30146
Posted
So I got voicemail from doctor and they said that "everything looked adequate". And that "there appears to be no adrenal insufficiency." I called back and had them fax my labs and wondering if you or someone might have some input on it. Kind of hard to read..
So my baseline at 9:50 am was (4.6)
The range before 10 am is 4.46-22.7 ug/dl
60 mins after cortrosyn stimulation it was (18.1). It says The range for normal levels for 30 mins post cortrosyn should be >7 and 60 mins post is >20. Help???!!!