AS Connected to Low Cortisol Levels

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never mind the acupuncture. apparently a roving gang of medical skeptics have come along and poked huge holes in any research pointing to its (consistent) effectiveness. i can't even find the study on electric stimulation of points. (as i recall--this wasn't electrical stimulation of needles, but mild stimulation directly to the points themselves.) there really isn't much research pointing to its effectiveness at all.

still going. along with the things that interest me, am getting vast eyefuls of nonsense. refuse to reference the last study i pulled up because it was filled with things like "cognitive deficits;" "prenatal methylmercury;" "pervasive developmental disorder;" and the best---let's "cure" autism through the use of the nicotine patch.

i will scream later.

(what i want from the experts: help me regulate my adrenaline so i'm not so jumpy, work on doing something about people's seizures and then-- go home. leave my low-morning cortisol alone.)

anyway--there was one phrase in the mess i found completely compelling:

low baseline cardiac parasympathetic activity with evidence of elevated sympathetic tone.

(this found consistently in those on the spectrum apparently.)

i don't know where they came up with the "cognitive deficits" and what-not. as far as i can see, low parasympathetic activity paired with elevated sympathetic tone would largely lead to anxiety.

that's what i'd like them to deal with.

at the same time, the phrase fascinates me because it corresponds to the overall picture in my head.

so must think about this for a while.

and since i'm compulsive, i wanted to post it. something about that phrase just seems very useful to me.

low baseline (cardiac) parasympathetic activity with evidence of elevated sympathetic tone.

okay. this was kind of kicking around in my head and i didn't yet have a way to articulate it. it's a ridiculously cumbersome phrase, but it still means something to me.

this is one of the things i see in myself.

even positive emotions--if a little adrenaline-based (enthusiasm and joy, ex.) will cycle into a mild agitation after a while. seems to me the adrenaline is working overtime; parasympathetic isn't doing what it needs to to help me "cycle" back down to a state of calm.

also thinking in general of that "constantly ticking mind" many on the spectrum report---to such a degree that it tends to interfere with sleep. also seems to me as though the adrenaline is high; the parasympathetic system isn't doing what it needs to do to bring the body back into a relaxed state.

i doubt i'll be able to grasp all the bio-chemistry i need to in order to make full sense of this. but this is still one big logic puzzle to me--and since my adrenaline dearly loves a logic puzzle, i have to keep on with it.

so... is it a trade-off then? again, i come back to the question---balance sympathetic and parasympathetic responses---and what happens to the hyperfocus?

(and if the hyperfocus is gone---what happens to say, NASA?)

is anxiety a given on the spectrum? or is it largely due to bullying, social confusion, "gossip," etc., etc.

and if "elevated sympathetic tone" and "low baseline para-sympathetic activity" go with the territory of being on the spectrum---what happens when this is shifted? what's lost? if anything? (or something really important.)

maybe it's not so all-or-nothing. maybe it's about modulation.

will "have" to think of this further.





it's definitely perseveration....

Hyperfocus could be related to adrenaline. I know I'm VERY tunnel visioned when at all hyper. It seems to heavily increase that tendency to fixate on detail to the point that I can block the world out.

(If you ever want to get rid of me, give me some caffeine, and ask me to solve a problem...)

yes! i'm starting to think that too. lol--mainly what all this ranting and obsessing is about is trying to figure out how to modulate that so i can sleep.

(the sad thing is you can't get rid of me by asking me to solve a problem. i just keep coming back to this thread and largely monopolizing it with nonsense.)


okay--so here i go with more. (i'm obsessing about adrenaline, in part so i can figure out how to even out my sleep cycles. but since i'm in hyperfocus about adrenaline---i can't seem to sleep.)


anyway--maybe i should stop being so stubborn and start asking a few questions:

(if anyone else wants to join this thread--feel free. just jump in between the spaces. i'm largely autistic. i'll just keep going on with my own thing in between the actual discussion. just carry on please.)



questions---re: the body working hard to eliminate cortisol so that measurable levels remain steady---

trying to get a picture of how this would be done: mechanisms in the body, etc. what's the process by which this happens? (in as simple a nutshell as possible.)

am working now on getting definitions of what exactly "elevated sympathetic tone means." if measurable cortisol levels remain low in us (generally speaking), it doesn't have to do with cortisol so much--it must be the adrenaline: that's my thought anyway. could it be higher in fluctuation even though cortisol overall remains low? (which i suppose brings things back to the first question.)

in terms of low baseline cardiac parasympathetic activity---i'm assuming this has something to do with the vagus nerve and whatever cranial nerve regulates the heart.

but i don't know the "mechanics" of it all yet. am looking into this now--although it's largely bumpy.

starting to see why the comforting routines can be so essential. in my case: i've stayed in the house doing nothing but crossword and logic puzzles--venturing out only for food--for weeks on end. i slept beautifully. i was calm. any incoming stimuli outside of that seem to set off an adrenaline response from which it's hard to come down.


(sympathetic on overtime; parasympathetic on "slow.")

but what about that (nearly) complete lack of short-term memory paired with that intense long-term memory. how does that fit, i wonder?

just throwing out the pieces until they fit.

i should have known better than to take any of that study seriously. it's just not the case that all on the spectrum have autonomic dysfunction (high sympathetic activity and low parasympathetic activity.) at least, that's what i'm gathering now. (i could be confusing two conditions: the type of sympathetic/parasympathetic imbalance i mentioned earlier, and something called dysautonomia.




htttp://en.wikipedia.org/wiki/Dysautonomia

there are currently studies being done on reduced cardiac parasympathetic activity in autism:


htttp://www.ncbi.nlm.nih.gov/pubmed/16198209

apparently there is something to measure brainstem function in real time--off to find out more about this (and how it relates to the whole picture.)

again: i have no medical knowledge to speak of--except for various anatomy and physiology courses. i'm just largely trying to solve a huge logic puzzle.

many of the pieces may not even be relevant.

whoops--amend that. (must get my NLD mind to focus on what i'm reading.)

according to the last line of the study referenced: autonomic dysfunction is in a separate category from high sympathetic tone/low parasympathetic etc.

according to the conclusion, high sympathetic tone/low baseline cardiac parasympathetic activity is suggested to "come with the territory" of being on the spectrum.


http://www.ncbi.nim.nih.gov/pubmed/16198209

(my amygdala is veeery tiny; my hippocampus a bit large.)


so that's where that long term memory comes from, it seems.

amygdala--fear responses high; social skills (largely non-existent.)

well. never mind the hippocampus. the studies are all over the place on that, as it turns out. was excited initially at a study that noted an enlargement in the hippocampus above the amygdala in those on the spectrum. this was used to explain that (intense) long term memory. would have solved the little paradox about--what seemed to me---something to do with high cortisol. (high cortisol over time damages hippocampus; short-term memory difficulties occur; long-term memory steps in to pick up the slack. the reasoning was all off anyway.)

but as it turns out, the conclusions on the hippocampus are all over the place--some say the right side of the hippocampus is larger in those on the spectrum than it is in NT's. others say it's the left side. others say it's larger overall. others say it's actually smaller.

my thought: we're a bunch of individuals in regards to the hippocampus.

the amygdala, on the other hand---that's another story.

studies consistently indicate differences in spectrumites' amygdalae from those of NT's.

just a quick overview of the amygdala:

regulates arousal
controls AUTONOMIC responses associated with fear(!) (it's that adrenaline again.)
emotional responses
hormonal secretions


for a (to-me-anyway) fascinating read on the amygdala, see:


http://www.scholarpedia.org/article/Amygdala


for some interesting research re: "our" amygdalae:


google The Amygdala, Autism and Anxiety (click on doc.)

around and around again. wanted to see how the amygdala and the vagus nerve work together--this is the kind of thing i'm finding. (it seems to come back to vagus nerve stimulation--aka deep brain stimulation--if anything is to be done about anything.)


http://www.apa.org/monitor/apr04/vagus.html


and one on "amygdala kindling" (direct stimulation to the amygdala? i think that's what they mean. not a treatment apparently, but something only used for studies)

http://www.jneurosci.org/cgi/content/ab ... 19/22/RC41

everything seems to point to lowering fearfulness/fight-or-flight (as well as seizures.) i don't know why this hasn't been FDA approved yet in the treatment of anxiety.

also invasive--though not as invasive as has been in past. (think it's implanted into the chest--the VNS.)



i'll stop now!

exhausted - wanted to thank you again for all your research and sharing. Do not have much to contribute at this time, but do read this thread consistently... look forward to next issue!


M.

Hi. This is one of the most interesting threads I have come across. I have severe Adrenal Insufficiency and very low Cortisol levels, all my test results point to Addisons Disease (most likely Secondary ie my pituitary not producing enough ACTH) other than a test they call the Short Synacthen Test (useless test in which they inject you with tens of thousands more ACTH than the human pituitary would ever produce on its own, it's like kicking a dead donkey, it moves but it's still dead).

I took matters into my own hands and got a 24 hour salivary cortisol done which showed very low levels, and have been self medicating for over a year (20 mg Hydrocortisone each day split into 4 lots). Getting the GP to prescribe this for me is a real difficulty.

I took a folder to my GP with all this info that I collected from various sources: http://homepage.ntlworld.com/pernod/results/adrenals.html I wrote to around 30 Endocrinologists and other specialists around the UK, giving them my 24 hour adrenal stress index results and my low serum basal cortisol (done by the NHS, they should at least respect that one) of 130 nmol/l (the range for that one was 250-850). But they preach the Short Synacthen Test as the gold standard for Adrenal Insufficiency in the NHS. In my case it may well be my pituitary that isn't producing adequate ACTH. My pituitary is no longer producing another hormone (TSH) that should be produced so I suppose this is the most logical possibility.

I believe my Adrenal Fatigue has been caused by years and years of the sort of stress than an NT simply wouldn't have to endure. I also believe that prior to having this problem with very low cortisol I would have had very high cortisol for several years (as is consistent with how Adrenal Fatigue progresses).

My test results were as follows:

My Basal Serum 9am Cortisol done by NHS Endocrinologist in May 2008 was 130 nm0l/l (range 250 - 850)

Results of my 24 hour Salivary Cortisol profile done through NPTech on 16th June 2008. The results showed very low free levels of cortisol hormone and are consistent with Addisons, Hypoadrenalism or a severe case of Adrenal Fatigue:

Salivary Cortisol:
8.00am 6.6 (range 12.0 to 33.0)
12 Noon 2.0 (range 10.0 to 28.0)
4.00pm 2.3 (range 6.0 to 11.8 )
Midnight 1.3 (range 1.0 to 5.0)

Salivary DHEA Sulphate for Age Range 35-44 years
8.00am 2.4 (range 8.0 to 24.0)
12 Noon 1.7 (range 5.0 to 10.8 )
4.00pm 1.8 (range 3.5 to 7.5)
Midnight 2.7 (range 2.0 to 5.0)

These results were consistent with my low basal serum cortisol of 130 nm0l/l. The morning result in both cases was halfway between the bottom of the range and zero. Is this due to having AS or just due to years of stress that my body is no longer able to cope with?

Here are my test results and graphs from the lab:






The graph is very similar to one I found here: http://www.chronicfatigue.org/ASI%207.html demonstrating the final stage of Adrenal Fatigue, where the adrenal is in a state of near complete failure.

However getting an Endocrinologist to recognise this is another matter. There are Endocrinologists and other specialists out there who do and will recognise this condition (Dr Sarah Myhill who specialises in alternative medicine for example and Dr Durrant Peatfield) but they are the ones who practice privately.

For those who are interested here is the list of some of the symptoms of Adrenal Insufficiency that I had last summer prior to self medicating with Hydrocortisone:


List of Symptoms:
Extreme weakness, so weak that I need help dressing and other things.
Feeling sick all the time. Vomiting.
I just cannot manage physical or mental tasks very well.
Cannot concentrate, cannot remember from one minute to next.
Everything is too difficult, everything is a mountain to climb.
Total exhaustion, weak beyond words, physically and mentally. No energy.
Dizzy spells, close to fainting on some occasions.
Extreme fatigue, unable to even sit up some of the time.
Brain fog, a lot of confusion, I have lost my memory (particularly short term and this was one of my strongest points before).
Have almost collapsed outside of home several times and dizzy spells within home.
Seems like dementia a lot of the time and getting worse by the day.
Every day approaching midday I feel close to collapse.
Feel woozy a lot of the time, fuzzy head as though drunk.
During the afternoons I feel like I am dying I feel that weak.
Sometimes during the evening I can sit up and do something for an hour or two as long as no concentration is involved, evenings aren't as bad when the children are in bed.
Feeling sick much of the day, really nauseous when I try to do something.
Feeling very close to collapse much of the time.
Choking in sleep.
Constantly hypoglycaemia, having to eat every half hour to try to ward it off, even this doesn't work fully as eating makes it ok for 5 or 10 minutes then the sick feeling comes back.
Not able to cope with stress, get very sick and severe headaches at slightest bit of stress, also worse hypoglycaemia when any stress, have to remove myself from stress because it makes me sick.
Headaches.
Very irritable, cannot cope with things.
Too weak to walk far.
Tore muscles November and December last year, had physio etc, but still hasn't healed.
Constant muscle aching and pain.
Hair loss, also very thin wispy hair.
Haemorrhoids.
Asthma, eczema and hay fever that has worsened despite taking anti-histamines.
Joint problems, weak and cracking joints, locking into place and then cracking and hurting when forced to release from locking position.
Fairly new problem with left knee has problem now, feels like has opened too far, sharp pain and then it gives way.
Muscle weakness, this has been an ongoing problem, repeated torn calf muscle, also generalised body weakness, muscles unable to co-ordinate to do tasks.
GP referred to gym but wasn't well enough to take it up, so tried to exercise at home instead on stepper and following DVDs, however on a few occasions the exercise made me vomit and I ended up feeling very sick for rest of day and extremely weak.
Constant viruses and cannot fight them, have had cough for over a month and it won't clear up at all, getting a lot of colds that linger, unable to fight things off.
Last couple of years constant sinus infections and for a few years excess mucus in throat that will not clear up no matter what nose sprays I have been given.
Palpitations, skipped heart beats.
Feeling very sick particularly just when needing to pass bowels.
Constipation and diarrhoea.
Complete exhaustion.
Carpal tunnel syndrome, particularly at night, frequently wake with both arms numb.
Used to have very high IQ, now that has completely gone, lost huge amount of cognitive ability.

Here is a list of improvements since I began taking Hydrocortisone a year ago:

Significantly less dizzy spells.

Less shakiness and trembling.

Most of the time I can now stand up from sitting without feeling faint.

Less episodes of low blood sugar (previously I would feel weak and shaky as soon as a few minutes after eating and crave more food, the shakes would then be stopped temporarily by eating) – NOW I have far less episodes of Hypoglycaemia and can actually manage for longer between meals. Although a few hours after a dose of Hydrocortisone I begin feeling weak and shaky and the low blood sugar returns.

Can feel my thyroid medication working and my circulation improving for the first time in 4 years. MUCH LESS shivering and feeling cold right through.

Have been able to take less T3 as a result of the hydrocortisone enabling my thyroid medication to work properly.

Less constipation although this is still an issue.

Knee rarely opens too far now – this was a huge problem and is now resolving.

Less nausea, prior to taking hydrocortisone this was a huge problem throughout the day every day. Although this still happens a few hours after taking my medication and most days I start feeling quite ill again around 11am.

Episodes of vomiting much less on the Hydrocortisone. Light exercise is now possible without being physically sick.

Less of a fuzzy head and that drunk feeling has gone away.

The times when I am feeling close to collapse have become much less frequent, this was a huge problem before and used to happen throughout the day EVERY day. Now it happens only when I haven’t taken my Hydrocortisone for a few hours.

When I start to feel really weak around 11am I now take a small amount of Hydrocortisone and whilst it doesn’t get rid of the feeling entirely it does enable me to sit up and keep going.

Skin and hair less dry.

There has been an improvement with my eczema and less asthma attacks too.

Less choking in sleep (could be due to the hydrocortisone directly or could be due to the fact that I no longer have to eat food in the evenings as Hypoglycaemia is getting better as a result of taking Hydrocortisone).

Calf muscle tears (from November and December 2007) finally healing up.

Less episodes of brain freeze, concentration now improved, although things do slide a few hours after taking Hydrocortisone, for example if I am late taking my 11am dose. Prior to taking Hydrocortisone brain used to completely lock up as if I didn’t know what I was doing. This used to be throughout the day and continuously. Now it happens a little less often, although it always happens when I am due to take my medication.

Less frequent sicky headaches.

Getting much less palpitations since taking hydrocortisone. Again this only happens when I have had extreme stress, am unwell (viruses etc), or am late taking my medication (the palpitations happen even if I am an hour or so late taking the medication).

Getting better at finishing my sentences, prior to taking hydrocortisone I would always get stuck halfway through a sentence and forget what I was talking about. This still happens quite a bit but it happens more when I am late taking a dose. I need to take small doses every few hours.

Clearer thinking and a little less brain fog.

Coping a little better with stress.

Slight improvement in short term memory although this varies from day to day. Sometimes I will have a better day where I can remember things from a few minutes prior, other days are still very cloudly indeed, but I have to stress prior to the hydrocortisone every day was in a cloud.

Cough clearing up. I had a cough that lingered for weeks and weeks, and finally cleared up once I started taking the Hydrocortisone. Each time I get wheezy it clears up within a day or so if I increase my Hydrocortisone dose.

Also I am able to fight viruses a little better than previously by taking larger amounts of Hydrocortisone when I get ill. Last year prior to taking Hydrocortisone I was extremely ill with hand, foot mouth disease (almost to the point of collapse) and it took weeks to clear up – this is an illness that usually only affects children but the lack of Cortisol left me unable to fight even basic viruses. I haven’t been as ill as that since I have been taking Hydrocortisone, although a throat virus did take ages to clear up due to still being very low on Cortisol and not taking as much Hydrocortisone as I needed to.


Self medicating with Hydrocortisone has been life-changing for me. The doctors hate me for it. However I am simply taking a hormone that my body is not producing enough of, in order to get some quality of life back. Taking steroids can be dangerous and Adrenal Insufficiency itself is very dangerous, but I do take the precaution of carrying around a homemade and laminated steroid card so that medics would know what to do in an emergency (iv injection 100mg Hydrocortisone plus intravenous Saline and Dextrose). I think if I had not taken the decision to self medicate I would not be here now!

wow! thanks for posting. Addison's--will have to look more into that. (believe me, i will.) i'm in hyperfocus about these things, but have little actual knowledge (lol.) as far as i'm concerned, i'm trying to work a logic puzzle. often i get the pieces entirely wrong.

so treatment with hydrocortisone doesn't really change AS/ASD traits--it just modulates things a little. okay! i've got that now.

i'm also interested in the fact that your am cortisol levels are high, relative to the rest of your levels throughout the day. supposedly, that doesn't happen much with those on the spectrum. (but when do we ever fit into neat little categories?)

i also didn't know it was possible to do a chart throughout the day like that. (i assumed measurements were taken here and there.)

i relate to the part about high anxiety. i deal with high anxiety on a (nearly) daily basis. i think my cortisol levels have always been relatively low (common on the spectrum--have always had low bp, temp, evidence of hypoglycemia, etc.) but now also wonder if they haven't been even further depleted due to long-term stress.

want to look more into ACTH and DHEA too; i know they're pre-cursors to adrenal hormones, but not entirely sure how they fit the picture, or what the progression is.

the joint pain--had had something kicking around here in my skull about that at some point; but forgot what it was. so that is (possibly) related to low cortisol? (developed symptoms of arthritis extremely early.)

really interesting that you had to take matters into your own hands. sometimes i wish the experts would just hire a big team of us to mutually hyperfocus on our own issues and see what we all come up with.

IF the NHS guidelines recognised Adrenal Fatigue as the grey area between 'normal' and 'Addisons', one would see the following pattern:

Stage 1 begins with excess cortisol (moon face, thin skin, weight around the middle etc):
http://www.chronicfatigue.org/ASI%201%20.html
Stage 2 has the correct curve but the cortisol remains high throughout the day:
http://www.chronicfatigue.org/ASI%202.html
Stage 3 the diurnal curve is slightly different rising at midnight, however the patient produces excess cortisol throughout the entire 24 hour period:
http://www.chronicfatigue.org/ASI%203.html
Stage 4 the diurnal curve still rises at midnight however the first reading of the day is now below the range and the middle two readings are within range:
http://www.chronicfatigue.org/ASI%204.html
Stage 5 sees low cortisol with a raised DHEA:
http://www.chronicfatigue.org/ASI%205.html
Stage 6 sees a more unusual diurnal variation with a low morning cortisol, levelling off during the day and rising again at midnight:
http://www.chronicfatigue.org/ASI%206.html
Stage 7 sees a low cortisol throughout with a matchingly low DHEA:
http://www.chronicfatigue.org/ASI%207.html

After stage 7 comes Addisons and complete adrenal failure (but not until 90% of the glands are destroyed) unless it's a case of Secondary Addisons as a result of a problem with the Hypothalamic or Pituitary not producing enough ACTH to tell the adrenals to produce Cortisol. The whole process producing of producing Cortisol is part of the HPA axis, Hypothalamic Pituitary Adrenal.

Wow. I think it's possible I have this...

I have always had this thing where I don't properly "wake up" until around 11am. I can force myself to get up and do things, but can't think very well, and I'm physically cold and weak.

After some point close to 11am, I become alert and fully functional again.

I also tend to be most alert and active late at night, around 11:30-12:00, which would correspond to the "levelling off during the day and rising again at midnight".

Interestingly, I also have less of those head rushes from standing late at night. Those indicate low cortisol.

Some time I will go have that thing seen to.