Help! NHS test contradicts 24 hour Salivary Cortisol.

[Guest guest]

Hi. Firstly I must apologise for the length of this posting and thank

anyone who has the abundance of patience and understanding needed to

read through all of this..

I am a hypothyroid patient for whom medication does not work very

well. I am on high doses (150 mcg Thyroxine and 90 mcg Liothyronine

each day) yet still have low frees (ft4: 10 range 9 - 24 and ft3: 4

range 3.5 - 6.5). My TSH has been suppressed for 4 years at <0.03.

As some of you know my NPTech 24 hour Salivary Cortisol came back very

low last month. My Cortisol results are uploaded here:

http://homepage.ntlworld.com/pernod/results/scan0007.jpg and the graph

provided by NPTech is uploaded here:

http://homepage.ntlworld.com/pernod/results/scan0008.jpg My salivary

results look a lot like stage 7 adrenal failure as demonstrated by

this graph http://www.chronicfatigue.org/ASI%207.html I have posted

them before, but are my results from NPTech:

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)

Prior to the 24 hour Salivary Cortisol test my Endo tested Basal Serum

Cortisol in May of this year and it came back well below range at 130

nmol/l.

Both the 8am salivary cortisol done on 18th June and 9am basal serum

cortisol done in May were consistent. My morning cortisol in both

cases was very low, halfway between the bottom of the range and zero.

This ties in with how I am feeling and the fact that my body is not

able to properly use the thyroid medication.

Then last Wednesday I had a Short Synacthen test done at the hospital.

Worth pointing out that this test was done while I was suffering badly

from the Hand Foot Mouth Virus and that due to that one would expect

the basal serum cortisol to be higher than previously. The Registrar

telephoned the results of the Short Synacthen to me yesterday. She

said my basal cortisol was higher than last time, at 230 nmol/l and

that 30 minutes after the ACTH injection, my cortisol level reached a

respectable 700 nmol/l.

I now feel that the NHS Short Synacthen test is of very little value

and has not addressed the very low free levels of cortisol that I

experience throughout the day, every single day. I can see why this

test has been referred to as " dark-aged endocrinology " . It tests for

full-blown s or nothing and is very misleading.

I would very much welcome comments and if any of you are willing to

share similar results and experiences please do.

I have written to my Endocrinologist today and sent a cc to her

Registrar and to my GP. Here is a copy and paste of the body of my

letter (again I must apologise for the length of this posting)......

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

3rd July 2008

Re: Hypoadrenalism - Adrenal Fatigue

Dear Dr *****

Thank you for arranging the Short Synacthen Test for 25th June. I was

disappointed that the test was not able to indicate my lack of

cortisol. The test only shows up the most severe cases of s

Disease where at least 90% of the adrenal glands have been destroyed.

The Short Synacthen test does not show cases of Adrenal Fatigue or

Hypadrenalism where there is less than 90% damage to the glands; an

analogy my husband spoke of actually made a lot of sense, in that

giving someone the injection of ACTH (is it true that one is given

over 500 times the volume a pituitary can produce?) is like giving a

car with a dead battery a jump start. The engine will start up given

the massive jump start, but the battery is still dead. One more

frequent saying one comes across is " you can kick a dead donkey, it

moves but it's still dead " . Added to those analogies, I was suffering

a severe case of Hand, Foot, Mouth Virus at the time of the test and

that fact (in addition to the stress of being in the hospital) would

have been the reason my basal cortisol during the test was 230 nmol/l

rather than the 130 nmol/l reading you previously got for me in May of

this year. I am not knocking the test as it surely has its place for

indicating a severe case of s where at least 90% of the adrenal

glands are destroyed by anti-bodies, which is of course as rare as 1

in 100,000.

However I am writing this letter to ask that you give much

consideration to the 24 hour salivary test that actually indicates my

low free levels (and ties in very concisely with the first basal 9am

serum corisol level a few weeks ago of 130 nmol/l).

Both am results (cortisol and salivary) are halfway between the bottom

of the range and zero. I firmly believe that the salivary test I had

done on 18th June 2008 was indicative of my low free levels throughout

the day. In America the physicians refer to the Short Synacthen as

" dark-age endocrinology " and whist I realise the differences between

the NHS and the health care in America I do believe that in using the

24 hour salivary testing in America they are recognising all forms of

Hypoadrenalism and not just the most severe and rare case of s.

Also the 24 hour adrenal stress test looks at a patient's free levels

throughout the day, which has great significance as it is how the

person lives, and truly reflects that person`s day to day existence.

With the private health care in America there is of course the

motivation for Doctors to medicate their patients for profit, and I

can see how it could be seen as a biased health care system for that

reason; however this also means that there is more money pooled into

research. I believe they are on the right track when it comes to

adrenal fatigue, because I am living it day in day out and feeling

extremely poorly so much of the time. The vast majority of

Endocrinologists in the USA will not give credence to the Short

Synacthen Test; the 24 hour salivary stress test is generally what

they use to diagnose s and Hypadrenalism.

I have done extensive research in this subject, from a variety of

resources, including liaising directly with some medical persons in

the USA, reading books (two to mention are " Adrenal Fatigue, the 12st

Century Stress Syndrome, by L WIilson ND DC PhD " and " Adrenal

Fatigue, a Desk Reference, by Dr Salmaan Dalvi " ) and reading various

papers. I have also spoken to several patients who (despite higher

levels of free cortisol than mine) were diagnosed with s

Disease. However I have to say that my greatest and most valuable

research has been with my own symptoms, the low basal cortisol I had a

few weeks ago and of course the 24 hour salivary test, all of which

indicate that I have hypoadrenalism.

I believe some benefits of the 24 hour salivary cortisol stress index

are that the levels are more indicative of the amount of hormone

inside the cells where hormone reactions take place. Blood, on the

other hand, measures hormones circulating outside the cells. Neither

blood or urine tests correlate with the hormone levels inside the

cells and therefore those types of tests do not necessarily reveal how

much cortisol is getting into the cells.

In a case such as mine, the free levels may be significantly lower

than the total levels. During the Short Synacthen test my free levels

were not tested. The Short Synacthen test did not then take into

consideration the possibilities of high levels of cortisol binding

proteins CBG. In the same vein my thyroid frees are always low, which

might possibly be a sign of high levels of TBG. If indeed one has high

levels of TBG then it would be no surprise to also observe high levels

of CBG (resulting in low free levels of cortisol). Something along

these lines is noted on the AD Network website as " high CBG AD " . There

is a study done by a retired Chief Biomedical Scientist Welch

who specialised in Haematology.

Some people with Adrenal Fatigue try a combination of Isocort and

Hydrocortisone, in addition to a regime of vitamin suppliments (in

particular high levels of vitamin c) and sea salt for a period of a

few months and then gradually reduce the Hydrocortisone dose to see if

their then rested adrenal glands are able to regenerate. Although I

don't want to go down that route due to financial restraints, I do

need to do something because on a day to day basis I have very little

free cortisol and other than the Short Synacthen, my test results

indicated hypoadrenalism.

At our last meeting we discussed the fact that my fT3 and fT4 are

still at the bottom of the range and I am still suffering symptoms of

an under active thyroid. I asked you then if we could raise my

thyroxine up to 175mcg. You felt that my levels were OK and expressed

that you would like to wait until we have the results of the Short

Synacthen Test in any event. Given my symptoms (that do tie in with

hypoadrenalism) and my extremely low cortisol levels throughout the

day, I would like to make a proposition as to the way forward. Would

it be possible to introduce around 20mcg hypocortisone daily for a few

months to see what happens (for example 10 mcg on waking, 5 mcg around

noon and 5 mcg around 5pm). In addition to this we could lower my

thyroxine and liothyronine doses to a more normal doses in the hope

that by bringing my free cortisol level into range my cells would

actually be able to properly use the thyroid medication.

I would guess that the reason my high levels of thyroid medication are

not working to a level that alleviates my symptoms, or showing in the

blood work, is that I have such low cortisol throughout the day, as

shown by the graphs I have enclosed once again. One would assume that

you need good levels of free cortisol in order for the cells to use

the thyroid medication.

Please would you give some consideration to my suggestion. I would

really appreciate it if you could agree to a trial of hypocortisone

based on my May low serum cortisol of 130nmol/l, plus my 24 hour

salivary cortisol stress index (which showed extremely low levels of

free cortisol throughout a 24 hour period) and my symptoms of

hypoadrenalism in addition to my symptoms of hypothyroidism. I felt

very hopeless after the registrar gave me the results of the Short

Synacthen, despite expecting those results after everything I have read.

This is why I feel that trying some hydrocortisone (or if absolutely

necessary Cortef from the USA) is the next logical step. I plead for

your support on this matter as I would be rather nervous about

self-medicating with a steroid without your medical support and

experience behind me. I know that I have a very poor immune system at

the moment due to lack of cortisol. The Hand, Foot, Mouth Virus lasted

ages and whilst usually mild in adults I had it severely. I have now

had a lingering cough virus for around 6 weeks. I worry about

anything cropping up that my immune system would not be able to cope

with (infections, viruses, even cancer), due to my immune system being

compromised by lack of cortisol. Having 6 children I am often in the

schools and around viruses such as the Hand, Foot, Mouth Virus that I

am still recovering from.

If you agree to a trial of hydrocortisone I would welcome you to put

on record that I am personally requesting to try this, and to do so

through the NHS (which would mean I could carry a steroid card) would

be safer than to self medicate. I would ask that this letter is put on

my file both at the hospital and at the GP's surgery. In short, I am

confident and comfortable enough with this to accept full

responsibility. With such low free cortisol levels my quality of life

is very poor indeed, and my thyroid condition is still not adequately

under control despite high levels of medication (most likely due to

the lack of free cortisol in my blood).

I have enclosed my list of symptoms again, along with my 24 hour

salivary cortisol results. I look forward to seeing you on the 16th.

Yours Sincerely

etc etc etc

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Below is a paste of my list of symptoms that I enclosed with the

letter to my Endocrinologist (in addition I enclosed with my letter a

copy of my NPTech results, the NPtech graph of my results, and a

printout of the chronic fatigue webpage on stage 7 adrenal failure

showing a similar salivary cortisol graph to my own).

GENERAL 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.