Recovery is Possible - Assuming You Know What's Really Wrong... Part 3 - Symptoms vs Tests - The Adrenal Piece of the Puzzle

Hello again.

Continuing on...

Having established thyroid function probably not the only problem it was confirmed with a saliva test panel (Genova).

Here are the results.

NOTE: This was done while I was on 0mcg thyroxine for 10 days + no other supplements.

Cortisol

8.00 am 4.7 (ref. 12-22)

12.00pm 4.3 (ref. 5.0-9.0)

4.00pm 0.5 (ref. 3.0-7.0)

10.00pm 1.8 (ref.1.0-3.0)

DHEA

8.00am 0.18 (0.30-1.0)

4.00pm 0.10 (0.30-1.0)

CONCLUSION

•Adrenals struggling – low cortisol and DHEA production (DUH!!)

•Must be affecting hormone production – oestrogen, progesterone etc. Zero libido :-(

•On NAX I get CONSISTENT FULL NIGHT’S SLEEP

(1st time since I had kids, now 9 and 11)

•Bedtime HAS shifted from 7.00pm (!!!) to 10.00pm without crippling tiredness

•No need for top-up sleeps around 3pm

•CURIOUS TO KNOW OTHER HORMONE LEVELS...

•Also this is a one-time, one-day test - would be good to see a pattern.

Several Things to Note-

First - on testing cortisol...

Finger-prick tests are available for this. Generally finger-prick tests available online are one-time tests. Cortisol levels MUST be measured over the course of a day so don't waste your money. Also, even pricking your finger can increase cortisol production and screw the results. The saliva test is commonly used in the US by doctors and other practitioners and has been found to be a good indicator of adrenal function. But be aware - there is debate on this.

UK doctors generally use the Synacthen test to test adrenal function (usually if they're looking for Addison's Disease (low adrenal function) or Cushing's Syndrome/Disease. ~90% of cases of Addison's are autoimmune. 70% of Cushing's Disease are caused by pituitary adenoma or growth. My GP has offered me the Synacthen test via an endocrinologist.

The Synacthen Test involves stimulating the adrenals with tetracosactide injected into the bloodstream. Cortisol levels are then measured to determine how well the adrenals produce cortisol. There's a Short Synacthen Test (measurement after 30 mins) or Long Synacthen Test where levels are monitored over 24 hours. There's debate on this test too.

I know I don't to have AUTOIMMUNE Addison's as my anti-adrenal Abs are negative.

Addison's is one of the autoimmune diseases that can travel with autoimmune thyroiditis and with the thyrogastric cluster (more on this when I tackle the immune System tomorrow).

So...from my POV brief hooray - (so far) because Addison's (and Cushing's) can be life-threatening if not treated properly. I also don't tick the weirder boxes on the symptom checkers for these.

On DHEA...

For those who aren't familiar with this DHEA it's important for a whole bunch of things.

This link explains it best in my view:

nlm.nih.gov/medlineplus/dru...

Summary - a decent amount of this is crucial to balanced metabolism across the board.

Now back to my test results.

Needless to say they didn't cheer me up. I decided to test my cortisol at night to be sure what was going on. By 12.00am it should be low as you're supposed to be asleep.

In my case it wasn't - after all it was already heading upwards at 10.00pm. It kept going.

12.00am 2.8 (ref.1.0-3.0)

02.15am 4.0 (ref.1.0-3.0)

NOTE: I was waking up between 2-4am so why not test then?

No surprises. Whatever way I cut the results they were bad. Somehow I'd managed to deny that stress could have caused me any health problems. After all...I was invincible (...not!)

I decided to dig deeper - beyond the test results - to get a handle on what stress really meant for me. I used the Holmes and Rahe Stress Test.

Background...

In 1967, psychiatrists Thomas Holmes and Richard Rahe examined medical records from over 5,000 medical patients to determine whether stressful life events might be linked to illness. Patients chose which of 43 life events they'd suffered. A positive correlation was found between their life events and illnesses. The results were published as the Social Readjustment Rating Scale (SRRS) (Holmes and Rahe Stress Scale). Subsequent validation in 1978 supported the link between stress and illness.

I decided to test myself year by year since 2002 when my thyroid started malfunctioning.

How It Works

The test scores on everything from death of a spouse, loved one, change of job, house move all the way down to Christmas. Each stressor has a score reflecting how severe it is.

You simple tick and total. Like the Basal Barnes Test it's good to use this test alongside others to help build a fuller picture.

Results

Scores >300 indicate high risk of illness

150-299 indicate moderate risk of illness

<150 indicate slight risk of illness

My Results

For me out of 10 years (2002-2012)

4 years scored 150-299 with an average of 285

6 scored >300

Of those 6 years, 2 years - 2004 & 2011 - scored 584 and 625 respectively.

Then the penny finally dropped. This was a long term problem. I guess I was aware of feeling stress all that time - my stupid long-houred corporate job, 6 country moves, 8 house moves, 2 births, 2 deaths. And those were only the really high stressors.

I sent all my stress to my gut and shoulders. I worked and played hard and sleep badly.

I used Nytol BUT

on the flip-side I exercised regularly (always been ruthless about this).

I did yoga, walked and swam - things I find relaxing as well as periods of gym work.

I ate sensibly and not too much. (But I probably drank a fair bit socially (how naughty!))

So...I had done a couple of things right. But not enough to protect my body.

I'll tackle the Immune System more fully in my next blog because in "Thyroid Disease - The Facts" p37 there's a cursory nod at the link between stress and immune function.

Short version - short term stress (fight or flight where adrenalin is produced) and long term stress (where cortisol levels are increased) leads to suppression of the immune system.

Vanderpump and Tunbridge state that when the stress goes away the immune system rebounds and in susceptible people this can lead to autoimmune disease.

Cursory just isn't good enough.

So that's me.

In 2001/2002 I moved country, changed job, had my first child, moved house twice, had a largely absent spouse, a genetic scare with my daughter.

And bingo Hashimoto's thyroiditis.

I now believe that had I been able to see the full picture (immune system meets adrenals meets thyroid meets gut = hormones all over the place) when my thyroid started acting up - I would've acted then and perhaps my Hashimoto's would've come and gone.

It's possible for this kind of autoimmune thyroiditis to resolve up to 2-5 years after it starts.

For me I fear that horse has bolted.

I have no idea how much functional thyroid I have left.

(May have to check that...)

I guess at this point I'm stoic. This is a big lesson I never wanted to learn.

The truth is that at any time I could have taken better responsibility for my health.

I could've stopped driving myself so hard, cut myself some slack, pushed back on the people around me, asked for more help, stopped trying to be an all-things-to-all-people-goddess-all-the-time. Clearly an A-type personality doesn't help.

My children finally forced me to stop. I couldn't continue to work and have kids. Something had to give. There wasn't enough energy to go round. I'm VERY lucky - I had enough savings to take time. Most people aren't so lucky.

Today the picture is brighter.

I'm treating my adrenals. I don't expect a quick fix - this WILL take months/years but I want them working properly again if possible. I'll deal with other supplements in a later blog - how much and why - for each one.

I'm building low stress me-time into my life - yoga, breathing, walking outdoors, laughing with my kids, going to the movies with my husband. Sounds cheesy but hey - this is my life. I only get one. I'd like it to last as long as possible.

On the flip-side - I'm starting a business. To be honest that's all good and my business partner is a legend so we make work part of our lives not all of it. Again lucky we can.

I'll tackle the Immune System tomorrow.

Thanks for reading...

Happy to field questions

Final Quick Note:

I'm testing out a urine-based adrenal test today. This checks the amount of salt excreted which is elevated for people with adrenal insufficiency.

NOTE: I don't add salt to my food - this is important as it affects the test.

I'm testing it to see what it shows, how it works etc...

Not sure how I feel about it yet. Need to read some more on this o ne...and let you know how it goes...

27 Replies

oldestnewest
  • Can you give details of the stress test please.

  • The Holmes and Rahe Stress Test?

  • Question for you...

    How do you know if your adrenals are downregulated in response to chronic illness (basically doing their job) or struggling to respond and have become a problem in their own right? I don't see how the adrenal stress profile can tell the difference.

    I failed the adrenal stress profile pretty comprehensively too. Oddly enough I was feeling pretty darn good at that point in time. I had discovered one of my problems/stressors - gluten intolerance - and done something about it. I was sleeping well, coping with family life (before that I used to get tired just listening to people) and able to concentrate properly at work for the first time in several years.

    Then I got ill again, and now I'm not sleeping well at all. I don't need an adrenal test to tell me that my cortisol production is peaking at 4am when I'm suddenly bolt wide awake (a completely new experience for me). In fact, very high cortisol seems to cause sleep apnea which is kind of scarey. It looks to me like my adrenals are in fine working order, but I still have some underlying issues to solve.

    In my case I think it's my digestive system. Gut problems seem to be worse at night, not really sure why. Looking forward to the installment about the gut.

  • I don't think an any test outright tells you how a problem's caused only that there is one. Chronic illness does cause adrenal stress because it puts a stress-load on the body. I guess if goes on for long enough you end up in the same place as for any other long-term stressor.

    It's interesting you mention the gut. I think that as soon as more than one system is out of whack it's hard to figure out what went wrong first. I think (and I'm guessing) for me it went gut - adrenals - immune system - thyroid.

    Gluten intolerance is a gut issue that I think reflects an immune response. As for the adrenal link. When I became stressed my digestive system went mad and that reflects the gut-adrenal link.

    Before I started adrenal support one of the things that was always wrong when I woke up 2-4am was a churning stomach. I take digestive enzymes and adrenal support and with both the churning digestion and the waking up have gone. Take one out they both come back.

    I think the whole point is that all these systems are inextricably linked. T3 and cortisol are needed in all cells to regulate cellular metabolism - not enough of either is just going to make you fell rotten.

    I didn't know about too much cortisol leading to sleep apnea; it wouldn't surprise me.

  • Hello Skyfall - a very interesting Blog, thanks.

    Am interested in the brand/dose of Digestive Enzymes and the Adrenal Support you used? and what time of day you took/take it?

    ALSO, I have found Cranial Osteopathy to be amazing for helping the body heal itself from the stress, in my case was long term childhood trauma. But end of day Stress is Stress what ever the stressors. CO helps in so many ways, just need to find an experienced one who is used to dealing with trauma/stress.

    I happened across this website this morning whilst researching ALDOSTERONE . (part of the adrenal cascade.) I'll put up as a blog later. Really found it to be written in good plain language. Low Libido is a factor with Aldosterone issues

    drhedberg.com/2011/02/24/th...

    Re High night cortisol.

    I have started taking my Zinc at night which helps bring down cortisol.

    DHEA - I now take at lunchtime, also helps lower cortisol.

    I am fortunate to not have low cortisol and just the one high at night.

    best

    JLTsirius

  • Hello there - I like Dr Hedberg's site too. He's just sane. But a couple of his details aren't quite right on the science side. I love the way he explains it simply.

    I'm on Nutri Adrenal Extra (NAX) and Nutri-thyroid. I also take Nutrigest with every meal (dodgy digestion!!) plus a bunch of otehr stuff (4g Vit C, CoQ, L-tyrosine, magnesium, selenium, zinc, quercetin) etc. (yep ythere's more)

    I rattle at the moment but am hopeful I'll be able to reduce all this at some point in the future.

    I take Nutri-thyroid with 50mcg thyroxine on waking

    NAX after breakfast and again at 1-2pm. I have taken it later up to 4pm. Any later and I'm up for a while!!!

    Hope that helps...

  • I agree, chronic illness does put physical stress on the system, but the downregulating of the adrenals is a protective response. A consistently high cortisol can lead to bone loss and other problems, so a person's body adapts by lowering the cortisol production.

    I think it matters whether low cortisol is a protective adaptive response, or has become a problem where cortisol cannot be produced even when the situation requires it. I think the treatment for low cortisol would be different in these two cases. That's why I think it's an important question. There are quite a few people that don't do well on adrenal glandulars. They get overstimulated, end up crashing or both.

    Again, I agree that gluten intolerance is a problem involving the immune system. I had very high levels of antigliadin antibodies in my stool, even though it turned out that none were in my blood. The proof was in taking gluten out of my diet - a couple of digestive problems resolved quite quickly, and I felt much better, like a weight had been lifted.

    When the immune system is involved and doesn't get a decent rest, the adrenals get pulled in - probably as the protective response to start with although with enough time and pressure it can progress to overt failure. If the adrenals are asked to do too much, then the sex hormones suffer (the "progesterone steal"). That explanation has helped me understand a lot of what I've experienced.

    I think the cascade of events is similar whether the thyroid is involved or not (at the moment, mine isn't, touch wood). It just gets a lot harder to fix things if there's a thyroid problem underlying everything else. I think the connection there is gut--immune system--thyroid. It is the immune system attacking the thyroid that causes Hashimoto's - essentially it is an immune disfunction and the low thyroid function is a symptom arising from the destruction of the thyroid gland. And I believe that auto-immune problems start in the gut - a theory that's not proven, but makes a lot of sense to me.

  • Yes you are so right and this is such a useful addition to a really wordy blog!!

  • It's nice to meet someone who thinks along the same lines.

  • Thank you for this work and reporting it to us. Invaluable! I'm really interested in the information on the adrenals and pretty sure mine are in a bad way after 6 deaths of the most significant people in my life: widowhood; a decade of jobcentre "bullying"; a house I can't afford to repair etc. etc. I have approached GP's re: still feeling ill on T4 only, but just told "What do you expect after the horrendous time you've had?" - then shown the door with a smile but nothing done! Can you tell me how I can go about helping my Adrenals please?

    Jen

  • Hello Jen

    That sounds awful...I'm so sorry. There are 2 books I can recommend. I know it's reading but one has a specific plan for destressing your life and addressing adrenal probelms. Its 'Adrenal Fatigue - The 21st Century Stress Syndrome' by Jim Wilson. The other one I like because it deals with thyroid and the medical side as well as adrenals is Dr Peatfield's book - 'Your Thyroid and How to Keep it Healthy'. This contains a full explanation of adrenal problems and details the program I'm on (well part of it). The Immune System and Oestrogen Stuff's separate.

    BTW - and you probably know this - death of a spouse is THE number 1 stressor - right at the top of the Holmes & Rahe Stress Test at 100 points so that's a 1/3 of the way to scoring >300 already. Stay in touch, ask more questions if you need support.

  • Many, many thanks skyfall! I do have the Peatfields book, but read it about a year after husbands death and right at the beginning of being diagnosed hypo ( it took me 6 years and a specialist to tell me it was Hashi- GP on being asked what type I had said "they are all the same"!) I'll get the book out and read it again - probably didn't take much in at the time. The other book you quote I haven't read, so I'll get that one. Your offer of support is most gratefully accepted! I think of all the things a person can offer someone with this condition is an understanding and acceptance of its difficulties and the support to help that person through it. Unfortunately, our medics are few and far between in offering this support.

    Bless you....

    Jen

  • If you're dealing with bereavement - my Dad was hit by a car last year when crossing the road - 'The Year of Magical Thinking' by Joan Didion is quite good. Try the Adrenal Stress book - it's pretty accessible with lots of tips. It always horrifies me how there are so many communities for thyroid, all feeling the same way, and slipping between the cracks in the medical system. That's chronic disease for you - too hard basket for them!

  • skyfall, very insightful writing and similiar to what many of us go thru. You really have done a very thorough job, sometimes type A isn't all bad, the trick is always the balance. I look forward to the next installment. PR

  • If only - I totally accept the concept of adrenal fatigue being in there with all the rest of it and also believe that it need sorting as a matter of urgency before thyroid in many cases.

    Taking a step backwards though to stress are some people doomed? Either like myself I am a full-time carer to my Autistic son who is only just going through teenage years and with no family or friends to help out much as a lone parent it is impossible to actually remove yourself from that stressor.

    Or for others, there is the possibility of being one of those 'types' that live a little on the edge and always have done. The ASD personaility for example is unfortunately driven by anxiety so stress is always hand-in hand. If they take 'time out' they just sit there thinking of all the other things they should be attending to. It's a vicious circle for some.

    If there was a straightforward way (not SSRIs) to de-stress then I'd personally do it tomorrow. Meanwhile perhaps, we continue to strive for something medical perhaps to relieve us of this daily burden of just feeling so awful.

    On another point - just how much stress are we putting ourselves under just by thinking about where our 'missing' cure is 24/7?

    I know fo rme that every day I'm buzzing aorund in my head - well I wonder if this and I wonder if that......

    I wish of all things that I coud just roll with the puinches with this and give up trying to find an answer sometimes. I did try it a couple of years ago.

    When I visited my GP and she asked how I was I just said that over the previous 2 years I had made friends with my pain, adapted my diet, tailored my exercise, adapted my vehicle, changed my schedules, given up my bad habits, increased my sleep, supplemented my missing nutrients, put away all of my theories, changed the style and dyed my hair, bought orthotics and sensible shoes etc - so how was I feeling?

    Just the b****y same!

  • Hello Tulula

    Feel your anger and agree on so many points. The problem is medical solutions pretty much always involve treating symptoms (unless it's penicillin for tonsilitis that works in 48 hours). As for me, finding the cause(s) is the only way I can live. I have a full time job etc. so don't have ages to think about this but have to get some answers. To be honest I'd gone into 'acceptance mode' and was tailoring around feeling rubbish. It's just that my quality of life kept deteriorating until I didn't really have one - more of a zombiesque dragging around the planet looking vague and feeling like the undead...I'd had enough. I didn't realise how bad it was until there was an improvement. A 2 day setback didn't feel like much of a setback in the grand scheme of 10 years, although it was a bit scary. Doctors just don't seem to be interested in finding causes simply writing prescriptions and patting people on their hypochondriac heads. My GP's reaction to what I've done looked more like regret and shame (he's actually very smart) but he's an adult and makes choices like any other adult!

    Pity we don't have a choice about how we feel...I wanted to hug you when I read what you wrote. What sort of pain?

  • Hi, why are you doing a urine test for cortisol levels? Or are you hoping to find levels of other hormones as well? I found it easier to find a private doctor who knew how to treat the condition.You lose much less that way, like your life and livelihood and health, wasting time fighting tunnel visioned bureaucrats (the average doctor). I hate my NHS GP so much that I hope never to have to go to his surgery again and this is the is the second surgery I have swapped to. They are all the same.

  • Would love a private doctor. I'm checking urine to make sure I;'m not overdosing on NAX and putting too much cortisol into my system. The test looks at salt in urine. The more you have the more cortisol you're producing. It's just a sanity thing so I don't make the mistake of overdoing it!!

  • Hear hear..I totally agree...my doctors are rubbish too....luckily my Endo has started to listen and work with me ...but it's taken me 3 whole years to get this far....

  • skyfall i agree with everything you have said-- adrenal are the 'it' thing--- dr sara gottfried- says cortisol is needed for balanceing every hormone- i totally totally agree about the stress thing as i knwow i had a n adrenal crash, i was interested to see you had written rebound then hashi as i now has hashi and never did have antibodies-- but yes i am into my third year so trying to get well and i was so so veru veru ill, never thought a human body could tolerate what was happeningto me for nonstop 2yaers... it does take a lifetime to reover thes eadrenals an dother hormones an d i have read dr jon lees progesterone also helps. i shall watch your blogs altho i rarely visit here noe. wish yu well. pettals..

  • Thanks Pettals - if you're in a 3 year window with Hashi's I think you may have a chance to arrest it. Check out the immune system stuff though because people rarely do anything about that because there's so much other stuff to do.

  • hi skyfall-- is there somewher i should look in particular for the immune stuff you mention... xx

  • Hi Skyfall

    Loving this blog and all the detail you have in there. Like you - my adrenals were in a bad place and I also had suffered family bereavements, pregnancy, lots of stresses etc which I think contributed to where I am now, Not helped by the fact I also have allergies, asthma all of which have worsened over the 'hypo years'.

    I have adrenal and DHEA issues aloing with Hypo and frankly I am not sure which chicken or egg came first there - the hypo or the adrenals,Both seemed to be weak but when I had my last baby they plummeted!!

    I have tried to fix both over the past 9 years of being hypo and still have hair loss problems from head (hypo) and eyebrows (hypo) and body (adrenal). I have also tried every trick in the book from Armour to nutri adrenals to HC to vitamins etc to support adrenals. I am now on 125mg of T4 and 40 mg of T3 and 5000iu of Vit D daily. Still pursuing the quest to get get my hair back and my eyebrows - they were the biggest symtpom/problem for me and I will know I am getting better when I fix those. Plus the psychological impact of having hair issues has impacted me a lot - so I need to fix it!

    I am currently waiting test results (blood and urine) for Thyroid and adrenals, However a recent 24 hour saliva test I did for adrenals had results similar yours - see below. I am just wondering if you have had hair problems, what you think the cause may be? you seem to have figured out so much already! My dr will be putting me on DHEA and pregnenolone supplements I think when they get test results back but would be very interested in hearing your thoughts. THank you.

    cortisol

    1 (after waking at 7am)

    results 17.6. Results on the normal range. The range was 12-22

    2 (4.5 hours later)

    results 4.8. Results low and outside the range. The range was 5-9

    3 (another 4.5 hours later)

    results 2.6. Results low and outside the range. The range was 3-7

    4 (just before bed time)

    results 1.4. Results in normal range. The range was 1-3

    total daily cortisol 26.4 (range 21 to 41).

    DHEA levels

    0.08 (results were low) range 0.30 to 1.00

    0.10 (results were low) range 0.30 to 1.00

    DHEA:Cortisol Ration 0.34 (results were low) range 1.0 to 4.0

  • Hair loss isn't something I've had a huge problem with. When I stopped taking thyroxine hair loss did increase. I've never had out 1/3 eyebrow problems. I do have slightly less body hair than I used to but not significantly. My suspicion is that the actual symptoms you get with hypothyroidism can depend on your genetics - some people end up with hair loss, some with flaking/brittle nails. Another possibility is that it's linked to a nutrient deficiency. How's your digestion? If you have problems getting enough (or absorbing) any of the following - vitamin A, vitamin B6, vitamin B12, vitamin C, vitamin E, copper, iron, zinc, folic acid, biotin - that can contribute to hair loss.

    Let me know what the doc recommends based on your next set of results...interested...

  • Hello,

    Skyfall, your posts are very informative and helpful. Thank you very much!

    I'm new to the blog, but not to the thyroid problems. I was diagnosed with Hashimoto and hypothyroidism 6 years ago. I moved to the UK 5 years ago and my experience with GPs here has never been good. Apart from being hypo (having the usual symptoms even while on levothyr.) I also suffer from chronic low iron and bloatedness. After struggling to get proper help from the GP for months, I sought help outside NHS and now I'm seeing a naturopath and NAET practitioner, who has helped me a lot with the digestion issues. She also suggest doing saliva test for adrenals, and here I have a question.

    1) Is it OK to do the adrenal test while on levothr.? I read on Skyfall post she stopped taking the hormones for 10 days before doing the test. Is that necessary?

    2) Skyfall mentioned FT4 and TSH finger prick test kit for £23. Does anyone know where I can get it? I'm seeing my GP tomorrow to ask for full thyroid test (THS, FT3, FT4, T4, TPOAb and TgAb), but I know they are reluctant to give them so I may do it privately (Genova). And when is the best time of the day to the blood test?

    3) Also, should I ask my GP to refer me to endocrinologist? In Poland where I come from it's a normal practice but here I struggle to get a eferral to any specialist. UK GPs messed up my hormones' levels before so I don't really trust them when it comes to thyroid and Hashimoto.

    Anna

  • Hi skyfall

    I hope you are doing well. i also wnat to find out, why everytime i leave antidepressants i feel horrible and althought i can leave without them i get all the hypo systhi=omps again. i want to find out where is all coming from. i was diagnose with the thyroditis a year ago . i was put on 25 thryroxine and doctor skinner keeo on outting it up but when i left my antidperessant a coupe of months later i crashed. how do i go about finding out i have had a lots of test done

    i am doing the saliva test and the vitamind d my b12 is 380 at the moment but nhs says is normal. how did you do it?

  • My hunch is it may not be your thyroid that's the only problem. Possibly could be adrenals as they play a part in hormone and neurotransmitter function linked to depression like serotonin production. Worth checking your adrenal function. There's a very close link between symptoms of low active thyroid and adrenal distress (including depression). It's worth finding out how your DHEA levels are doing (and cortisol). If you want a full explanation of the links between all the hormones it's worth reading Dr Peatfield's book - Your Thyroid and How to Keep It Healthy. He deals with depression etc. Anti-depressants won't sort out thyroid symptoms if the cause is low adrenal function and you'r not producing enough progesterone and serotonin.

    Not sure if this helps...

You may also like...