Listers,
Here below find The Saga.  (History first:  I have Premature Ovarian Failure
dx 1984; Primary Addison's Disease dx 1994;  trial of Synthroid begun 2004,
to determine if I felt better.  Tsh was never above 2.4; free T4 was very
good level.  Endo said, 'we want you to feel the best that you can feel...'
so I agreed to the trial.)

The SAGA--

PART I.
I am having hormone woes at age 49.  In February, Gyn said he wanted me to
decrease combi-patch & "see how" I do.  So in mid March I cut the dose in
half again.  (1/4 patch, since i was on 1/2 patch for the year before)

Then it all started.

After a couple weeks on the lower dose, I suddenly couldn't move.
felt run over from tip of toes to top of my head--totally wiped out for two
days, couldn't even get out of pajamas!!  gradually got better...

Felt like hypothyroid symptoms, not the mild natural ones, but the
unbelievably strong ones when adjusting Synthroid.  I had a TSH and free T4
two days later, when I could move again, but they came back ok.  (I think it
was the estrogen messing with my thyroid levels, just didn't catch it in
time?  maybe)

Then, my pulse started racing every evening.  Got up to 103 to 116 every
night.  (a sign of insufficiency, so I took 1/2 cortef tablet.  Only helped
a little.  Drank a ton of water.  Thought I was dehydrated!  Didn't help
much.  (both of these caused my HR to drop only about 3-4 bpm)  I thought a
cardiology workup was in order.  Endo  responded to my email, and said I was
trying to correct mineralocorticoid insufficiency with Cortef, which has
only a little salt-retaining properties.  So upped my dose of Florinef to
1-1/2 tablet, alternating days with 1 tablet.

That helped a little, but pulse still in the 90's!  [Oh, also throughout the
winter I had begun getting adrenaline surges.  Totally inappropriate to the
stimulus.  A minor thing triggered them, like someone tripping and falling.
(not me!)  And watching funniest home videos.  Surge.  surge.  surge.  !!
anytime something mildly unexpected occurred...  these got worse, more
frequent, etc.]

I increased florinef again, to 1-1/2 tablet EVERY day, and finally my HR and
bp are where they should be for me.  79 to 83.  [Dr. H. emailed me that my
autonomic nervous system was kicking in to keep me upright, because my
florinef was too low.  (over 2-3 months of this, cannot be good for my
heart)  With higher florinef, the 'surges' stopped--now i only get a normal,
gradual adrenaline rush if there is a major crisis!]

All seemed ok, until last Wednesday at school.  We had to evacuate to the
high school...  here below is THAT episode, i'll copy/paste from an email to
my addisonian friend:

PART II.
We had evacuation at school, not a big stress, but nevertheless unexpected.
Intense nausea occurred, a BIG sign for me of impending adrenal crisis, and
I took 5 mg. Cortef.  Then evacuated to VHS, and nausea increased.  Legs
weak, could hardly stand up.  5 mg. more Cortef.  It took 20-30 minutes
before the nausea subsided.  The school nurse drove me to the HS, since I
knew I couldn't walk.  Then washed out, felt like I couldn't meet ANY
additional stresses in the classroom or out, just wiped out completely for
days.  By Sunday I felt like myself.

My questions for the endo were:  Why such a long recovery?  Should I have
had my dexameth. injectable, instead of oral cortef, so it would work
faster?  What would help me bounce back faster?  Gatorade?


Dr. H. called me that evening.  His response:  Cortef by mouth was the
better choice--why go through the hastle of getting the dexamethasone, if
you can take the oral dosing, and aren't vomiting?  However, since I only
took 10 mg. extra, and the dexameth. equivalent would have been about 20 mg.
Cortef, he suggests that I could have used more at the time.

Re: gatorade, etc., he said I had always been aware that increased sodium is
important and can help.  (Crystal-something he also mentioned, but I don't
know what it was, nor did I hear the whole name.  crystal light?  ??  that
is a beverage, and i don't think it was lemonade because i would have
remembered it!!)

However, more important he said, was the fact that nausea was the prevailing
symptom, not bp issues.  And the nausea indicates probable glucocorticoid
deficiency.  In this situation, he says, I might increase my dose by
one-half, and then taper down over the next 5 to 7 days!!  He reiterated
that he believes I did not take Enough Cortef, and didn't take the increased
dose over long enough period of time.  He was VERY glad I had sorted out the
high pulse issues two weeks ago... it was good I was taking the extra
florinef at the time.... or the glucocorticoid insufficiency would have led
immediately to full crisis... whew!!


He continued, after hearing of the ordeal, and keeping in mind we just
increased my florinef to 1-1/2 tablet per day, it suggests to him that my
body is changing.  I have been on-the-edge of adrenal insufficiency for some
time.  I mentioned that the only changes i could think of, were decreasing
estrogen/progesterone by half in March.  That would cause medications to be
metabolized differently, i said, and he agreed with that.  Actonel was the
other addition.  He told me that current studies indicate only a minute
amount of Actonel gets into the system (don't remember if he said which
system!)  and he would have a hard time thinking that had affected my
steroid needs.

Last bloodwork results show an ACTH of '6', he agreed that was low.  ACTH is
extremely variable, he noted.  Added that, as I have read, 'nobody knows'
how to interpret these numbers in a way that has meaning for addisonians.
Then I asked him re: time of day, to which he replied, yes, you would be
past the morning spike.  Either way, it should indicate I am overreplaced on
steroids.  But the episode last week of near crisis Trumps That!  (exactly
his words)  So does he suggest that I up my baseline of Cortef or
prednisone? ?  Yes, he said even 2.5 mg. cortef more could be enough.

Then he asked if I had seen the Lancet article on physiological dosing of
glucocorticoids.  London journal, he said, stated that the MOST
physiologically sound dosing of steroids suggests a 10-10-10 mg. Cortef
dosing, at mealtimes!  there, that would throw out the diurnal spike at any
rate, he said....!  interesting

He said to go with more conventional methods, though, i might raise morning
dose to 12.5 mg., since the episode was early morning at school.

So that's what I learned, from my quite wise doctor.
I am going to tell him he cannot Ever retire!!

I think I am going to STRANGLE my gyn if he ever messes with my HRT again,
without preparing me for its effects.  Many primary sources state that
estrogen slows the metabolism of medications in the system.  The UK Addisons
manual says we can lower our steroids by 1/3, if on HRT.  The opposite must
be true.  We must RAISE our steroids if our estrogen decreases---doesn't
that make sense?!

Last night I realized that my DHEA replacement is not adequate either.  UGH.

I think I need to set another appointment with this GYN guy.  [I need to be
on some, I know.  How much?  With no adrenal function, and postmenopausal
ovarian state, I don't get estrogen from those sources.  Dhea doesn't
convert to androgen/estrogen without adrenal enzymes, which in me aren't
there.  With addisons, we have to replace each and every hormone/steroid
produced in the 'normal' person.  So how do I figure out what is the
age-specific Normal range for a woman with my dx?  I really need a range to
start with, don't I?  otherwise I am going through crises as above...?]

It takes SO much energy to get these docs to where I am at.  After a 40
minute appointment, gyn finally figures out.... oh.... you don't have
adrenal function.  You are not like the zillions of other women I see.  I
have to be so persistent and relentless.  Endo says, bring me symptoms and
we can treat them.  Symptoms.  I have to feel bad for days, first, THEN he
will make them better?  Customized care is good.  But I need Proactive
Customized care.


PART III.
Monitoring my pulse and bp three times daily after the above adrenal crisis,
I noticed that bp was ok, but pulse was still going up into high 90's and
low 100's later in the day/evening.  Thought perhaps I needed even MORE
florinef.  But i didn't have the POUNDING feeling I get with high potassium.
Just the higher heart rate--so I wondered if it was sodium loss through
sweat.  The sweat was so excessive, it was just Running off me.  Not even
excessive.  Profuse.  I emailed my endo's assistant, excerpt below:

6/7/05 evening pulse of 83, 98, 94, 85, 87. And 6/8/05 pulse 96, 93, 103,
98. (After 1,000 mg. sodium tablet, went from 94 to 91 to 90 over a half
hour span.) 6/9/05 evening pulses ran 96, 89, 86, 83.

Checked in my Merck Manual, Table 273-5. Urine & Blood Changes in
Electrolytes, pH, and volume in various conditions (shown on p. 2579 in my
edition) it says--

If Na is low and K is high, adrenal cortical insufficiency.

If Na is low and K is normal, excessive sweating, etc..

If Na increases and K is Normal, dehydration.

If Na increases and K decreases, primary aldosteronism.

and numerous ref. to renal conditions



My classroom was between 87 and 91 degrees all week and extremely humid.

I am sweating much more than I ever have. I can sit and do nothing, write,
etc. and adapt to the heat/humidity. But as soon as I do ANYthing--the
slightest movement, etc.--the sweat just oozes out of me.

'Excessively,' maybe, but more than that PROFUSELY. I cannot help but wonder
WHY am I so intolerant of heat. Estrogen changes??

And what to do about it?? It doesn't seem like all this indicates I should
take even more Florinef, does it?



She responded:

Dr. H. noted your e-mail. He is wondering if it is thyroid related.

Baseline TSH was never increased before you started on thyroid hormone.

So he suggests you test your TSH now and see of the symptoms are linked.

Then you may need to decrease the synthroid, or stop it and reevaluate how
you feel off of it.


Also, one evening the week before, an 'ill' feeling came over me, and then I
felt my heart flip-flop. Just out of the blue, flip flop. Then the feeling
intensified (caused me to think I should be at the ER maybe), and then
another flip-flop. Then the feeling subsided. Whole thing only lasted about
three minutes. Weird. Can't remember if it was after a really hot day or
not!


I let them know, and his response follows:
Ok for a trial off thyroid. Assess whether any positive or negative
consequences to better evaluate whether continuing is appropriate. FT4 was
1.3 TSH 0.45 ACTH 3 Calcium 9.8 Sodium 142 Potassium 3.7 all electrolytes
WNL.



So, if I am not actually hypothyroid, it should kick in ok.  If I have lost
more thyroid function through this trial on Synthroid, it should still kick
in but maybe be low.  And if my pituitary is becoming hypo, could happen but
hopefully not, it won't kick in.  And That's when i will be going downhill,
fast.



My main concern is during this three/four weeks off it, will my body be very
hypo, then hyper as my pituitary adjusts and wakes up my thyroid, til it
evens out again?

 hoping to avoid any crises!!

thanks for listening~good health to you and yours!

Holly




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