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From: Yvonne on 2 Jul 2008 09:28
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 Addisons
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 June 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 Addisons 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 Addisons 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 Addisons.

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 Addisons 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 James 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 Addisons 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
Michael 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.


From: Rod on 2 Jul 2008 10:40
Yvonne wrote:
<snip huge, detailed, lucid account>
>

Yvonne,

I feel for you.

You needed to post that. You didn't need to apologise - you are welcome
to do so.

Only last week someone someone I know went to her endocrinolgist in the
South of England with suspected hypothyroidism and/or Cushings. (Family
history of autoimmune thyroid disease is *very* strong.)

She was given THREE 24 hr Urinary Free Cortisol tests to do over THREE days.

Here is a link to some details about UFC testing:

<http://www.nlm.nih.gov/medlineplus/ency/article/003703.htm>

Is it worth asking for this investigation?

--
Rod

Hypothyroidism is a seriously debilitating condition with an insidious
onset.
Although common it frequently goes undiagnosed.
<www.thyromind.info> <www.thyroiduk.org> <www.altsupportthyroid.org>
From: Yvonne on 2 Jul 2008 10:53
Thank you Rod. I will definitely mention the test to the Endocrinologist. I
too am in the South of England. I didn't realise they could do urinary free
cortisol on the NHS. It has to be worth a try.

Yvonne


> Here is a link to some details about UFC testing:
>
> <http://www.nlm.nih.gov/medlineplus/ency/article/003703.htm>
>
> Is it worth asking for this investigation?
>
> --
> Rod


From: Kiki on 3 Jul 2008 15:28
Hi Yvonne,

Your ACTH stim test results are indeed indicative of low adrenal
reserve. Dr. Jeffries, in The Safe Uses of Cortisol, states that a
doubling of the serum level at any point of a stim test indicates low
adrenal reserve. Yours tripled in 30 minutes - pretty impressive.

Also, a couple of years ago, Dr. Andy (http://doctorandy.blogspot.com/
search?q=acth) had a blog post regarding dosing the ACTH stim test.
The standard size vials contain something like 1000 times the ACTH
that you'd normally have under a stress condition. Of course your
adrenals are going to respond to that much stimulation, even if
they're nearly dead. The reason they use so much is because (get ready
for this) that's how big the vials are.

BUNCH OF NO-GOOD, "SUPERSIZE ME" MORONS!

If it comes to it, you can eat hydrocortisone cream. A 1% strength
contains 10 mg hydrocortisone to a gram. I don't know if it's
available OTC where you are, but it's cheap and readily available in
the US.

Good luck & good health to you SOON!
Christine
From: Yvonne on 3 Jul 2008 18:05
Thank you for your response. Are there any papers available online by Dr
Jeffries that confirm what you are saying? Anything at all that I can print
and take to show the Endo on the 16th. The problem I'm having is that the
Registrar is saying the test indicates very healthy adrenals because the
number went up to 700 after 30 minutes. I really appreciate what you are
saying, and desperately need proof, some proof that is so strong and
definite that even an NHS Endocrinologist might stop and pay attention to
it.
Yvonne


"Kiki" <christine.grogan(a)gmail.com> wrote in message
news:c3187f51-4ce0-4105-ae23-291c9b29faf2(a)8g2000hse.googlegroups.com...
> Hi Yvonne,
>
> Your ACTH stim test results are indeed indicative of low adrenal
> reserve. Dr. Jeffries, in The Safe Uses of Cortisol, states that a
> doubling of the serum level at any point of a stim test indicates low
> adrenal reserve. Yours tripled in 30 minutes - pretty impressive.


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