Re: New; Not Doing Well at All

Hello - this is my first post here. A friend of mine recommended you
- Sue Mullen. Like Sue, I have chronic fatigue syndrome, and that's
how we know each other.

I was hoping someone might share some experience, strength and hope
with me.

I'm 52, been on Prempro (the middle dose) for several years and was
doing well on it. I tried going off of it about a year ago,
alternating pills (one day on; one day off) but found myself in mood
hell within a few days.

Two weeks ago I saw my gyno - because of breakthrough bleeding, she
switched me to Activella. Felt okay for a day or two but became
increasingly jittery and at bedtime I felt like I'd drank a whole pot
of coffee. And I was getting a headache.

So I called back. They wanted me to try FemHrt. I decided to go back
on the Prempro to stabilize, thinking that it might be a good idea to
be stable before I tried another new med. Problem is, I am no longer
stable on Prempro. I felt okay for a day or two, but increasingly now
I'm having the same issues I had with the Activella, but added to the
mix, I'm having shivers and I can't hold a thought in my head more
than a minute if that. Yesterday, I was in bad shape and thought
maybe I'd missed my morning Prempro, so I took another one late
yesterday afternoon. Things got worse. I was jumping out of my skin,
and seriously thought about going to the ER for something to calm me
down. I finally took two Tylenol PM and got a few hours of sleep.

I think Prempro is telling me I need off of this stuff. But I don't
dare cold turkey it, or even do the 'every other day' thing.

I called my gyno office. It seems to me that the progesterone might
be the trouble. So my bright idea was to just take the estrogen until
I can get in to see her and discuss maybe going off of it altogether.
But since i have a uterus, that's not a consideration, even for a very
short term. Can't get into see her; they may be able to work me in
sometime in the next week or two.

I can't deal with it that way. Also, I'm on 50 mg amitryptiline, and
have been for years for sleep. I am increasingly oversensitive to any
new medication, and am unable to tolerate SSRIs and the like. I can't
even tolerate magnesium or B vitamins.

Any ideas? I'm starting to feel desperate. I am making some scullcap
tea; it has calming properties and helps a teensy bit.

x-no-archive: yes

Miss Trish wrote:

>
> Any ideas? I'm starting to feel desperate. I am making some scullcap
> tea; it has calming properties and helps a teensy bit.
>

Hi, sorry you're feeling so crummy.

I have two ideas. One is that you may've just cut the dose too
drastically too soon. HRT is adrenal hormones, and when a pill
supplies, them, your adrenals shut down production. A very slow,
gradual taper off of any hormone gives you a much better chance of
waking up the adrenals as you adjust the dosages lower slowly.

I had to cut my transdermal HRT by tiny increments every couple of
months in order not to have bad symtoms return. Doing so allowed me to
cut down to a very low dose.

Another thought is that the high estrogen levels may've messed with some
of your other hormones which are constantly adjusting to any changes.
Oral, but not transdermal, estrogens raise cortisol binding globulin
very high, which causes your pituitary to go into overdrive to produce
more free cortisol, and a whole cascade of other hormones adjust to
that. By making sudden large changes in the Premarin, all your hormones
and pro hormones got up and played musical chairs some more.

For me, with pituitary/adrenal abnormalities, chills and jitters and and
sleeplessness means I'm a quart low on adrenal hormones, cortisol in my
case.

It takes 2-3 mos. for your entire endocrine feedback loop to adjust to
any changes, so you could wait it out, or try resuming a lower dose,
maybe, with a much slower taper?

HTH,

Susan

On Mar 3, 12:09*pm, Susan <neverm...@nomail.com> wrote:
> x-no-archive: yes
>
> Miss Trish wrote:
>
> > Any ideas? *I'm starting to feel desperate. *I am making some scullcap
> > tea; it has calming properties and helps a teensy bit.
>
> Hi, sorry you're feeling so crummy.
>
> I have two ideas. *One is that you may've just cut the dose too
> drastically too soon. *HRT is adrenal hormones, and when a pill
> supplies, them, your adrenals shut down production. *A very slow,
> gradual taper off of any hormone gives you a much better chance of
> waking up the adrenals as you adjust the dosages lower slowly.
>
> I had to cut my transdermal HRT by tiny increments every couple of
> months in order not to have bad symtoms return. Doing so allowed me to
> cut down to a very low dose.
>
> Another thought is that the high estrogen levels may've messed with some
> of your other hormones which are constantly adjusting to any changes.
> Oral, but not transdermal, estrogens raise cortisol binding globulin
> very high, which causes your pituitary to go into overdrive to produce
> more free cortisol, and a whole cascade of other hormones adjust to
> that. *By making sudden large changes in the Premarin, all your hormones
> and pro hormones got up and played musical chairs some more.
>
> For me, with pituitary/adrenal abnormalities, chills and jitters and and
> sleeplessness means I'm a quart low on adrenal hormones, cortisol in my
> case.
>
> It takes 2-3 mos. for your entire endocrine feedback loop to adjust to
> any changes, so you could wait it out, or try resuming a lower dose,
> maybe, with a much slower taper?
>
> HTH,
>
> Susan

I am considering asking my doctor if she will prescribe estrogen alone
and a progesterine cream. That way, if I can stabilize on that, I can
then do a more controlled, very slow taper.

I am glad that you recommend the slow taper. Two and a half years ago
I tapered from a nightly, low-dose of Librium I'd taken for sleep for
years. My doctor suggested a fairly rapid taper, but I did it very
slowly and even then it was not easy. So I am definitely in favor of
taking it slow. That way I am less likely to throw up my hands and
say, "I can't do this".

Thanks for your answer.

"Susan" <nevermind@nomail.com> wrote in message
news:632t76F25jtivU1@mid.individual.net...
> x-no-archive: yes
>
> Miss Trish wrote:

Glad Sue M. sent you our way!

<snipped>

> It takes 2-3 mos. for your entire endocrine feedback loop to adjust to any
> changes,

Yes, I can attest to that - when I went off my very low dose of Tapazole for
hyper-T last year, 2 - 3 months later I experienced big-time PMS symptoms &
then spotting (when I was 10 years post-meno).

Cathy




so you could wait it out, or try resuming a lower dose,
> maybe, with a much slower taper?
>
> HTH,
>
> Susan

x-no-archive: yes

Miss Trish wrote:

> I am considering asking my doctor if she will prescribe estrogen alone
> and a progesterine cream. That way, if I can stabilize on that, I can
> then do a more controlled, very slow taper.
>
> I am glad that you recommend the slow taper. Two and a half years ago
> I tapered from a nightly, low-dose of Librium I'd taken for sleep for
> years. My doctor suggested a fairly rapid taper, but I did it very
> slowly and even then it was not easy. So I am definitely in favor of
> taking it slow. That way I am less likely to throw up my hands and
> say, "I can't do this".
>
> Thanks for your answer.

Sure, but I forgot to complete my second thought, which was that there
are other hormones that should be checked, like cortisol (urine and
serum) and thyroid, for starters.

Susan

On Mar 3, 1:10*pm, "Cathy F." <clfrc...@adelphiadotdashdot.net> wrote:
> "Susan" <neverm...@nomail.com> wrote in message
>
> news:632t76F25jtivU1@mid.individual.net...
>
> > x-no-archive: yes
>
> > Miss Trish wrote:
>
> Glad Sue M. sent you our way!
>
> <snipped>
>
> > It takes 2-3 mos. for your entire endocrine feedback loop to adjust to any
> > changes,
>
> Yes, I can attest to that - when I went off my very low dose of Tapazole for
> hyper-T last year, 2 - 3 months later I experienced big-time PMS symptoms &
> then spotting (when I was 10 years post-meno).
>
> Cathy
>
> so you could wait it out, or try resuming a lower dose,
>
>
>
> > maybe, with a much slower taper?
>
> > HTH,
>
> > Susan- Hide quoted text -
>
> - Show quoted text -

Trish, I don't know what form Prempro comes in, but cutting down will
be easier if you continue taking it every day and cut the dose by
teensy increments. If it's in capsules, you might have to tease them
open and shake out an eighth or a quarter. If it's tablets, get a
pill cutter and whittle off progressively larger slivers. Like Susan
says, you have to do this slowly over a period of months. Skipping
days throws your system into a tizzy.

When I cut down from a "normal" dose of estradiol to a half dose, my
sleep suffered, but hot flashes were still manageable. I didn't
notice any mood problems. (I don't have my uterus so can just take
estradiol).

Re progesterone, Susan Love's Hormone Book says it's possible to
discontinue progesterone for part of the month with no harm to the
uterus. She describes the different hormones on the market and
various regimens. Synthetic progesterone does have its own set of
problems.

Susan, if you're reading this, I'm looking into switching to hormone
cream, and wondered if you knew of any with reasonable price. $84 a
tube is too much! Also, as an animal lover I can't consider anything
with Premarin. Thanks for any suggestions.

Les

x-no-archive: yes

sage hen wrote:

> Susan, if you're reading this, I'm looking into switching to hormone
> cream, and wondered if you knew of any with reasonable price. $84 a
> tube is too much! Also, as an animal lover I can't consider anything
> with Premarin. Thanks for any suggestions.


Les, I'm paying too much at the compounding pharmacy, but I believe my
endocrinologist recommends something called Estrogel for quality of
preparation.

I don't know how many doses are in the tube you've mentioned, but my
dose is so extremely low that it would be reasonable for me. I use .10
mg per ml at the moment of estradiol cream.

IIWY, I'd call and email some of the reputable compounding pharmacies,
like womensinternationa.com, or collegeparkpharmacy.com, and also check
listings for local compounders. My endo does not recommend
bioidenticals, he thinks the estrone is damaging.

If you can get a custom rx for a high dose per ml, you can get more days
out of each tube with less compounding cost. I've also found that
pharmacies are willing to negotiate against other pharmacie's prices and
compete.

HTH,

Susan

On Mar 3, 3:03*pm, Susan <neverm...@nomail.com> wrote:
> x-no-archive: yes
>
> sage hen wrote:
> > Susan, if you're reading this, I'm looking into switching to hormone
> > cream, and wondered if you knew of any with reasonable price. *$84 a
> > tube is too much! * Also, as an animal lover I can't consider anything
> > with Premarin. *Thanks for any suggestions.
>
> Les, I'm paying too much at the compounding pharmacy, but I believe my
> endocrinologist recommends something called Estrogel for quality of
> preparation.
>
> I don't know how many doses are in the tube you've mentioned, but my
> dose is so extremely low that it would be reasonable for me. *I use .10
> mg per ml at the moment of estradiol cream.
>
> IIWY, I'd call and email some of the reputable compounding pharmacies,
> like womensinternationa.com, or collegeparkpharmacy.com, and also check
> listings for local compounders. *My endo does not recommend
> bioidenticals, he thinks the estrone is damaging.
>
> If you can get a custom rx for a high dose per ml, you can get more days
> out of each tube with less compounding cost. *I've also found that
> pharmacies are willing to negotiate against other pharmacie's prices and
> compete.
>
> HTH,
>
> Susan

Thanks Susan, I didn't think of the compounding pharmacy. I got some
cream from one 40 miles from here when I first started HRT, and ended
up with far too high a dose. Apparently a little of that stuff goes a
long way. Their price ran about $35 a month, but I believe that was
for a dose of .25 mg. a day, along with some testosterone that does me
no good. I can probably do fine on a third of that dose. That
pharmacy has no competition so can charge what they want.
As far as Estrace cream at $84 a tube, I calculated that would last me
less than two months.
Thanks again,
Les

x-no-archive: yes

sage hen wrote:

> Thanks Susan, I didn't think of the compounding pharmacy. I got some
> cream from one 40 miles from here when I first started HRT, and ended
> up with far too high a dose. Apparently a little of that stuff goes a
> long way. Their price ran about $35 a month, but I believe that was
> for a dose of .25 mg. a day, along with some testosterone that does me
> no good. I can probably do fine on a third of that dose. That
> pharmacy has no competition so can charge what they want.
> As far as Estrace cream at $84 a tube, I calculated that would last me
> less than two months.


Les, call around the compounders and get estimates; let them know you're
doing so and ask them for their most competitive price up front. You'd
be amazed how competitive pharmacies are for business.

It's always best to get single hormone creams so each hormone can be
custom tailored to your needs individually. That's how my endo does it.

Susan