Adrenal Insufficiency Support Group

I’m new to this forum and would like to know if anyone has the symptoms I am about to describe before I go back to my endo and suggest that I might have SAI. Sorry about the length of this post but I'm very worried.

As an active 45 year old woman with two children (19 & 17) 1.65m tall, 62kg with BMI of 23. I lead a very healthy life. No smoking or heavy drinking, minimal ‘stress’ (just the stuff that comes with a cruisy job and family) virtually no processed food (can’t remember the last time I had take-aways!) and I exercise as much as the bod will allow. Used to love running and mountain biking. I have no sugar in my diet other than that found in food and until reading this forum I have not had salt in my diet, not even for cooking.

I have been suffering from the following symptoms in a milder form for years but recently the symptoms have become much worse. So bad that I am currently using up my annual leave to stay home from work as I just can’t make my legs hold me up. Exercise is the catalyst and symptoms are severe the next morning.

My symptoms are (in order of severity):

Exhaustion – lethargy, unable to keep eyes open

‘Adrenalin’ – like an injection of some drug, not always unpleasant but the after-effects are definitely not nice. Lasts for days sometimes

Muscle weakness - feel like I've run a marathon after making the bed

Exercise intolerance – fell off mountain bike with a fit

‘Fizzy’ muscles – especially large muscles

Nausea

Stomach pain (like I imagine an ulcer to feel)

Weird hunger - can't explain but you know what I mean if you've had it

Abdominal bloating

Abdominal pain - like appendicitis maybe

Confusion – typing wrong words and transposing numbers.

Unable to speak intelligibly - get words for things mixed up

Chest pain - left side only, under breast.

Short of breath – induces yawning and deep breaths

Joint pain

Diarrhoea

Tachycardia - > 230bpm in hospital. Have had episodes of SVT

Weird emotions! – when feeling confused

Always cold – Wearing thermal singlet in summer!

More recently, waking at 3am sweating profusely and hungry.

Unable to wake up in the morning or have the energy to stand up.

Usually can’t eat breakfast and just sit at the table with head in my arms feeling very sick.

Can’t eat complex carbs (pasta etc) anymore as produce ‘hangover’ and then an energy crash a few hours later.

In 2003 I was hospitalised when I had a series of massive fits/seizure at my place of work. Euphoric feeling just before the fit. Huge spike in temp, HR goes down then rapidly escalates to max. 230BPM, BP through the roof. Can hear whats going on but can't respond. Very thirsty and sore afterwards.

I was admitted to the High Dependency Unit as I continued to seizure with tonic clonic fits for 3 days. All my reflexes were very exaggerated under exam. I was constantly hungry and when I sat up to have my food I would have a fit. I ate no hospital food and ate mostly bananas and oranges. I also had a massive headache that slowly subsided over the 3 days.

Due to the nature of my work the hospital tested for tetanus, zoonotic diseases, ketamine use etc. Blood cultures and all sorts of tests done including MRI of my brain, ECG, EEG, lumber puncture, and many more I can’t remember. Neuro were involved and suggested Complex Migraine Syndrome.

My labs were never discussed with me other than to tell me that they didn't indicate a disease process.

After being discharged I spent about 2 weeks with impaired cognition, weakness in muscles, extreme lethargy, chest pain and hyperaesthesia. I would have a small fit if someone gave me a fright. And giving me a fright wasn’t hard to do! Too much physical activity brought on the fits as well.

I have had periods of the same type of thing over the last 6 years and admitted to hospital on 3 more occasions. But I have had a diagnosis from one Dr during these visits of pseudo-seizures (attention seeking)and they were very nasty to me and my family. I have been to psychologist for shits and giggles and his report after 4 visits said I was not an attention seeker or depressed. I do get down when the symptoms are bad but I can rationalise this and tell myself it's the condition not depression. I cry a lot and go "Why me wha wha wha." I currently take beta blockers (Propranalol 40mg qid) but they don't help with a lot of the symptoms other than the adrenaline. This has started to reappear too of late.

I have consequently instructed my family to not take me to the hospital if I collapse again but I have been getting worse with some of the symptoms and am worried that I may end up collapsing in the presence of strangers and not be able to explain what’s going on. I can’t hide it anymore!

I am going to investigate this all over again with the same endo that did all the tests back in 2003 as an outpatient when I had fully recovered. Needless to say the tests were all inconclusive. He did glucose tolerance test in hospital (5 days without food!), CT of adrenals with contrast, ACTH, & Dex suppression.

I am going to bring on the symptoms in their extreme form by exercising to muscle fatigue (usually 1 hour of hard out running & weights). I can last the evening but usually suffering the next morning. Salt, water, vitamins and rest has helped a little but still very weak. So wondering if anyone else has had fits or seizures or similar symptoms until being diagnosed with SAI?

Obviously a cortisol serum and ACTH test will help in your determination. Be aware however that it is very dynamic and you can still be SAI whilst in normal range. It's also worth mentioning that AI of any form has far reaching affects so that quite a large laundry list of symptoms is possible.

Most if not all of your symptoms can be attributed to AI. In fact 80% of them looks like mine before DX! I could no doubt go through the list and attach individual process reasons as to why they would happen, but I think it is probably worth for the moment looking at the list for things that aren't common.

- Fizzy Muscles - I include this only for clarification. Any kind of disjointed or nervy feelings in muscles are possible.

- Tachy - Certainly happens, but not that common. Large shifts in K/Na (usually primary AI) can cause this as well as adrenaline panic reactions. I hope some of those that have had tachy will chime in here because it has been discussed before. (To confuse things I have bradycardia!)

- Can't eat complex carbs - My first thought here was actually a kind of IBS bought about by low cortisol = not enough anti-inflammatory effect. (ie a food allergic reaction - and wonder if coeliac) The next was that it was insulin related, but you mentioned you had a GTT that probably exonerated that. I have seen mention of this by some group members though.

- Fits and seizures. Never happened to me and I'd suggest its unusual for SAI. As you described it I can't think of a direct mechanism that would cause it, but it is a long way out of my knowledge base! You are also talking 10 years ago..

Sorry kind of hard to be specific.

Is your BP normally low? Do you get postural (standing) hypotension. That's more common a primary symptom, but it does happen with secondary.

Extreme exercise is easy to understand in terms of adrenal capacity. Basically 80%VO2max in a normal human ends up with roughly 2-4x the cortisol production rate for the period of (but lagging) the exercise. For most of us on the group that means we have to updose our steroids by maybe 10-20% to compensate. If we don't we end up crashing the day or 2nd day after. If you have AI then you have very little reserve capacity for such things so the symptom onset is easy to believe.

If you perchance are in Sydney, PM me and I'll give you the contact details of an excellent diagnostician.

Not a lot of help sorry.. Hope some others make a few comments.

Bob (Australia)

I hope you get some answers soon. Make sure there is an ACTH stim test, if possible and I'd also try for a glucose tolerance test, and growth hormone level. The cold intolerance also sounds like hypothyroid to me, but if you are like me, the blood tests may not tell the tale of that. Keep in mind, that secondary adrenal insufficiency can be caused by a problem in the pituitary but there is also another form that has the problem sited in the hypothalamus. Bob, correct me if I'm wrong here.

Deb

I had a lot of those symptoms, especially the tachy, headaches, and unable to eat carbs. Bp thru the roof and adrenaline spikes. Get your catecholamines checked.

Apparently if there isn't a tumor, ther is also a condition where there is a phantom phaeo. Boy our bodies are weird!!!

What ever you have I hope you can get on top of it and feel better soon.

I read your responses straight away and even though I haven't been able to reply until now I have been thinking about what each of you have written.

I have just learnt that my GP hasn't even sent a referral letter to the specialist and I can't see him anyway until September!

I think I have had every test known to mankind but have never been given the actual test results, just the specialist (Prof. John Conaglen, NZ) letter to the GP also cc'd to me. I have been tested for phaeo and that was also negative.

All the tests have been negative but they were carried out when I was well, some months after the first major crisis with the fits. They are quite traumatic but infrequent. None in the last year. I think they are from some major metabolic imbalance. The real condition is characterised by the symptoms listed above.

Over the weekend I felt 'cured' by the vitamins and minerals I have been taking for the last 3 weeks. Thought it was "all in my head"!

So, I exercised moderately in the weekend, both Saturday and Sunday. After an early start on Monday and long days Monday and Tuesday I was really tired this morning. Today has been a day that feels like one I experienced when I was really quite sick. Can it take 3 days to affect you?

I am so pale now I look grey (and very haggard!). Cold, thirsty, nauseous, foggy in the brain (finding this very difficult to type)legs are shaky and find it tiring to stand in one spot. I feel like I'm having a heart attack.

Do the symptoms you all suffer from come and go? I felt amazing on Saturday!

How many times should I insist I am tested and should I be tested only when I feel sick? Can tests come back negative but there still be a disease process going on?

Thanks for your concern,

Julia

A few questions....have you been tested for hypothyroid? That can cause some of the symptoms you mention (and can coexist with and complicate adrenal insufficiency). Also, if you have test results, it would be helpful to share those. Sometimes, people here are helpful in interpreting (AND it's good for you to keep copies of everything you've had done, andyway; get a binder and keep everything in there, from all your doctors over the years). Also, just for you to be understood better by your English readers, one suggestion...it would be helpful for you to describe "fits" (shakes, seizures, temper tantrums.....? the more descriptive you are, the better I can understand)

Yes, 9.5 ys ago, I had seizures. Tonic clonic (or grand mal) kind, where I was unconscious for a long time (Status epilepticus), so the seizures were witnessed by ambulance people and the doctors in the ER. I had them a few times after that, too, until I found the right medication to control them. I had a LOT of testing during and after that time in order to find out the cause, but they never did. I thought it was a brain malfunction (electical activity gone haywire, right?), but have since wondered if it was the reverse: a metabolic dysfunction resulting in seizures. Anyway, my neuro at the time even consulted Mayo, and they all said I was a mystery, something my neuro told me I didn't really want to be! (She was great, and truly did everything she could to help me) I recently saw a new neurologist (I've moved many times since then) who said he wasn't even sure I'd had seizures since all the tests were negative and wants me to go off my anti-seizure medicine, which is a really stupid thing to say since there's no doubt I had seizures (my husband was SO MAD when I told him this: my seizures were nocturnal and he was there every time I had seizures, not to mention the hospital!). So there are doctors out there who will even question whether the sky is blue...... grrr. And yes, a feeling of INCREDIBLE fatigue, headache, and brain fog follow after seizures and it can last for several days. (and at its worst, can cause brain damage; my emotional memories were wiped out by the status epilepticus episode).

(as an aside, negative tests for seizure activity do NOT mean you don't experience seizures. Something really stupid for a doctor to say)

I also have extreme sensitivity to all carbs, like you mention. That sensitivity pre-dates (came before) the seizures. I've been a low-carb diet for about 14 years. I mix fats and proteins with any carbs I eat. If I ate only carbs/sugar, I would react with tachycardia and/or extreme fatigue and fall asleep in the deepest I-can't-even-move-my-eyelids kind of crash. Actually, my diet seems to be shrinking because I've been even more sensitive lately, it seems. Even trying to eat a balanced regular meal makes me very tired now. I reduced my cortef dose, but I don't know if the two are related. I eat like a bird, and crave salty snacks.

I started having problems working out over the last few years, when I also started having more health problems (correlating with increased stress load, which always seems to decrease my health a little bit more). Look up "dysautonomia": at my worst, I was having tachycardia even walking upstairs. But starting around then, I was having trouble after exercise. I could work out, but afterwards, I would get dizzy and then shaky, and sometimes even start all-over body shaking. I started adding electrolyte packets (twice the regular serving, with sodium and no sugar) to my water and it helped; I tested my theory that it worked by working out and NOT adding anything to my water, and I induced a shaking episode and needed to call my husband to come "rescue" me with salt. Someone explained that maybe what's happening is that during exercise, the body increases the heartrate to get blood around the body, but after exercising, the heartrate decreases but blood pressure doesn't increase in response, so the brain gets low on oxygen and adrenaline kicks in; hyper response is the shaking. I don't know why this happens, but it makes sense. Another way to help is to lay on the floor after exercising to keep blood up to the brain until the body stabilizes.

And yes, my symptoms come and go. I try to understand them but am very disorganized. As much as I encourage people to document, I don't do a very good job and can only recognize big-picture patterns over a period of time (and then don't know when it started, etc), like knowing that my head is more unstable (seizure-prone) before my period; and some problems are worse during ovulation (I am more achy-something that has been helped in the past by increasing my cortef, and have more trouble urinating, etc).

I don't have answers, but I wanted you to know you're not alone. Yes, I go days when I feel weak and shaky, but that's usually initiated by a big stressor (work, which I'm not doing right now; or a problem dealing with the kids, etc). My body simply doesn't cope well with stress, and stressors affect me in many different ways.

Except during my tonic clonic seizures I don't lose consciousness. At least I don't think I do. I can still hear all the hurtful things the drs are saying. I was kicked out of hospital once and I had a fit when they moved me into a wheelchair and nearly broke my arm as it got stuck in between the armrest and the seat.

I was covered in petechiae after that episode. Eyeballs were the worst! I wasn't welcome in hospital as I was attention seeking even though the monitor registered >230BPM 'Severe tachycardia' just before they turned it off.

I think the seizures are a result of the metabolic imbalance from the main condition. They are secondary to whatever it is that precipitates them. I just tend to focus on them as I don't want to have one again. They are extremely painful. I always feel on the verge of having one lately.

Here are some labs from 2003 outpatient workup:

 
Test                    Ref Range    Units            Result
Urine Creatinine/L                mmol/L            5.5
Urine Creatinine/24H    9.0-18.0    mmol/24H    8.7L
5HIAA/L Urine            0-50            umol/L            18
5HIAA/24H Urine            10-50            umol            29
Urine Catecholamines            
U. Adrenaline/24H    0-0.1            umol            0.02
U. Noradrenaline/24H    0-0.5            umol            0.16
U. Dopamine/24H            0-2.5           umol            1.00
U. Catecholamines    0-0.6            umol            0.18
Concentration Per Litre            
U. Adrenaline/L                        umol/L          0.01
U. Noradrenaline/L                umol/L          0.10
U. Dopamine/L                        umol/L          0.63
U. Catecholamines/L                umol/L          0.11
Cat: Creat (umol/mol creat)            
U. Adrenaline/Creat Ratio    0-27    umol/mol     2
U. Noradrenaline/Creat Ratio    0-75    umol/mol     18
U. Dopamine/Creat Ratio    0-258            umol/mol        115

Urine Toxicology

Urine Creatinine mmol/L 28.3

Amphetamines, Benzodiazopines, Opiates, Cannabinoids – negative

 
General Endocrine            
Test                           Ref. Range Units            Results
Free T4                           10 20      Pmol/L    15
TSH                           0.3-4.0    mU/L            1.1
B.HCG                                  IU/L            < 2
S. Cortisol    2hrs                      Nmol/L        430

Sorry about the mashup of columns! I can't get this table to work!

I have most of the reports from the endo work up after HDU stay a few months later, when I well. But too long to reproduce here. Basically say every body system normal.

Not sure now I feel better again whether to go through all this again after reading the endo & neuro suggesting I "work through managing episodes with the help of a appropriate Clinical Psychiatrist who also has a good understanding of medical conditions."

The neuro goes on to say he's not sure why the 40mg qid was working so well controlling symptoms but that I should wean off it after 3 months and get some help with psychological issues. Yeah, right...

Anyway, I'm going back on the Propranolol. Long acting is really awful so I'll just put up with 4 times a day.

Do you have problems with the long acting?

I'll let you know how I feel tomorrow, still have headache and can't eat. Last food a sandwich at 11.00am, now 10.30pm and apart from some corn chips I can't face anything.

So, talk to you soon,

Thanks for your info, much appreciated. Love to you all Night Night x

Post edited by: redjubes, at: 07/13/2012 04:10 AM

I spent some time on beta blockers before my diagnosis (metoprolol) - it was horrible and I weaned off as quickly as I could (took about 9 months though).

It really sounds like a cortisol issue to me. What is your BP like? Have you lost large amounts of weight? I'd be asking for an ACTH stim test, ACTH, cortisol, renin and aldosterone levels and adrenal antibodies.

Even on meds I have exercise intolerance and right now am paying big time for a little work out two days ago - my symptoms are pretty much what you are experiencing (except seizure activity).

I've gone through lots of periods thinking things were all in my head (and told so by an ER dr.) It's so very frustrating. It wasn't until I got on my current HC dose of 25 mg that I started to realize just how sick I was. I would probably stay away from exericse until your endo appointment and then try and bring on an episode right before you see him - maybe that will get someones attention?

(HUGS) and hope you get some answers soon.

Good for one thing but bad for another...

It's been very helpful reading your experiences as now I can go to the specialist and say I am suffering from a physiological condition not a psychological one!

Thanks again.

Hope you get some answers soon.