Re: Really, really sick and need your help PLEASE!!!

[Guest guest]

I'm a newbie responding to an old post, so everyone please forgive me? Nanci,

how are doing these days? It sounds like you have been through so much, and I

understand that all too well!

I take T3 as my only thyroid med, and it took some trial and error to get it

just right. I am now happy with the T3, which is Cytomel. It is often

recommended on various thyroid forums that the compounded T3 isn't as effective

as Cytomel, the name brand of T3. I also can't take the generic T3 med's because

the fillers keep me from absorbing it in my system.

Are you taking any B-12? I feel better when I take the sub-lingual methly form

of B-12. Don't take to cyno form of B-12, which is what's usually used in most

vitamins.

I'm sorry that this is off topic! I think my T3 and B-12 are among the many

things effect how my body deals with my E & P.

Best Wishes

Kat

>

> Hi,

>

> I was putting writing this message off for some time now because I couldn't

even bring myself to composing a simple post. I am forcing myself now because I

don't know where else to turn.

>

> for some background.....I am 55 yrs old and haven't had a period for almost 4

yrs. several yrs ago, I started experiencing some of the 34 symptoms of

menopause like hot and cold flushes, anxiety and depression among others. I was

okay and managed to get through it without hormones.

>

> I have been through the mill lately, going through several bouts of

anosmia(loss of smell) from cold viruses and went through a terrible benzo

withdrawal from xanax when I took it to cope with the loss of my senses. after

a horrific withdrawal that took 2 yrs to get through, I found out I had cancer

(Non Hodgkins lymphoma) and had to go through chemotherapy. I am not sure I am

still in remission because I have been too ill to undergo any scans or see the

oncologist. I have put cancer on the back burner for now because of what I am

dealing with lately.

>

> This past fall (October 2010) I lost my smell and taste again from a cold and

immediately went into a deprssion and severe anxiety because it reminded me of

what I went through the first time. I ended up at 2 shrink's office where I was

put in several anti-depressants which not only didn't work but made me even

sicker. I stopped them.

>

> at this time, I found an old friend of mine on Facebook who's sister just

happened to be Caren Abdela, from the Wiley Protocol company. She told me that

her sister could help me. I contacted Caren and thought this was the answer to

all my problems. I was traveling down to Florida where I found a doctor who

prescribed the WP. she started me on the protocol without really explaining it

to me much. I started it in February, rubbing those massive amounts of creams

into my thighs as I was supposed to. I thought wow, this will be easy. Little

did I know I was causing more harm than good. by the end of the month, I wasn't

feeling well, my b/p went way up (I have high blood pressure and am on a beta

blocker to control it which has controlled it for many years but not now) I

felt psychotic and out of control. I called Caren many times and she kept

telling me to up the Estrogen and increase the lines. I listened to her like a

good girl. the more I used the worse things got. I went to a regular gyno who

knew about the WP and he said it was ludicrous to be on such high doses of

creams. I stopped the WP after being on it for 7 weeks but the damage was done

and more. he put me on a much more reasonable amount of P/E and some

pregnenolone. but anytime I used any amount of hormones, my body rebelled. I

stopped it all, cold turkey, no tapering, just stopped. maybe this was a big

mistake but I just couldn't do it anymore.

>

> As the months went on, I started feeling worse and worse. I went to several

doctors including endocrinologists who tested me for several things. they found

my DHEAS high, testosterone high, prolactin low, FSH low, estrogen and

progesterone low, although a saliva test performed just 9 days after stopping

the WP showed incredibly high amounts of E/P but normal DHEAS and testosterone.

I didn't understand the difference between serum and saliva results. one endo

told me that because my DHEAS and testosterone was high, I probably had PCOS.

this freaked me out. I researched PCOS and asked another couple of gynos, can I

have PCOS? they said probably not because I am in menopause. I never had

fertility or menstrual problems at all. I had the chin hairs and lip hairs, no

acne, but my blood glucose was going up as well as the A1C which went up from

5.8 to 6.1 from this past May to July. I freaked out again and thought omg, I

have insulin resistance. more problems.

> The anxiety was getting out of control. I couldn't function and woke up in

panic mode everyday. I couldn't sleep or eat and was losing weight fast. I

dropped 30 pounds since last October. no appetite at all and I wasn't smelling

or tasting much either. through a reputable gyno, I found an osteopath 2 hours

from my home. she didnt take insurance, so I had to find the money to see her.

it wasn't easy. but I went and arranged payments to her.

> she tested me for everything. I had since found a few support groups on yahoo

for thyroid and adrenals. they scared me to death. I thought and felt I had all

the symptoms of hypo and adrenal fatigue. I bought books and did a lot of

research. I had it all and even the doctor thought i had all the symptoms. they

drew blood for so many tests I thought I didn't have anymore blood left.

> I had another saliva test and it showed high cortisol at night (the reason I

wasn't sleeping) the results on the first saliva test showed high at evening and

night but okay or at the lower end of okay in morning but the second test showed

okay in the morning and all okay except at night. the doctor put me on

adaptogens for high cortisol using ashwaganda, cortisol manager, 5 HTP and

melatonin for sleep. I can tell you that the melatonin worked eventually and I

was sleeping again.

> the moderator of one of the groups for adrenals and the owner of the FB

page..Stop the Thyroid Madness, Janie, who wrote the books Stop the Thyroid

Madness, didn't believe my results were right. she said I had all the symptoms

of adrenal fatigue and told me that because i didn't overnight the saliva to ZRT

in the heat of this summer, she said the results had to be wrong. but both tests

showed high cortisol not low. I never had one person tell me definitively that I

had hypothyroidism. I had 4 TSH tests, several FT4, FT3 and RT3 tests too and

each time they changed from high to low and back and forth. I do have a very

high Reverse T3 (blocked receptors) which can cause terrible symptoms too. my

doctor put me on compounded T3 and within a week of taking it, I was sick. my

b/p skyrocketed, pulse went up and I felt manic. she told me to stop it. I was

getting very discouraged and scared. why nothing i tried was working. what was

going on? I didnt know and the longer this went on, the more anxious I got,

worrying about the what if's and why's. why was it so easy for others to get

well and get treated but nothing was working for me.

>

> I have been tested for lyme too via the Elisha test which is very unreliable

but I cant' afford the 600.00 test that would show for sure if lyme was the

culprit. I don't venture out much but live in upstate NY where lyme is

prevalent. i do have 3 dogs that go out in the woods but I never had a bullseye

rash. not everyne gets the rash. My doctor doesnt' believe i had lyme. I do have

very high reactivated antibodies for EBV, parvo and mycoplasma pneumonaie. she

told me that she didn't think I have the viruses or bacteria but sometime in my

life I had it. she told me to take Olive leaf extract. I did but not noticing

any difference in how I feel.

>

> all the tests showed low vitamin D, low B-12, high calcium, high AST liver,

high A1C with blood glucose of 103, high triglycerides, high cholesterol, high

RT3, lowish sodium (was told to drink celtic sea salt to support the adrenals)

>

> I just had a cold and ended up in urgent care with a bad bout of bronchitis. a

pulmonologist told me that I shouldn't be on Atenolol (beta blocker) with my

history of smoking and lung problems. I am going to a cardiologist to change

medications. I also found out that my beta blocker can raise RT3 levels, lower

aldosterone (I have low aldosterone) raise cholesterol and tri's, mask

hypoglycemia and raise sugar levels.

> My most recent hormone tests showed 12.9 in estradiol, 0.7 for progesterone,

234 for DHEAS, total testosterone was high at 51 (range is 0-41) and free

testosterone is 0.9 (0-2.2 range)

>

> The last visit to this doctor, she suggested that I take an anti-depressant

after everything else failed. I went ballistic on her and told her that is not

the problem and I went that route before and it backfired. she finally

prescribed to me a low dose of a BRHT trouche of progesterone and a low dose of

Bi-Est cream taht I am supposed to rub into my wrists at night and take the

trouche at night too. even these low doses scare me. I have been using it only

2 night and don't feel a thing, not better and not worse. I don't know if this

is the answer or I should be using more. I guess going slowly is bettr than

using too much like the WP did. I truly believe the WP threw me and my body into

a shock and screwed up not only hormones but my thyroid, adrenals and everything

else. I have not been the same since using this horrible protocol. I probably

should have tapered off slowly but all I wanted was to get off of these

dangerous amounts of hormones. maybe just stopping like I did aftre 7 weeks, did

more damage. i don't know. but I am asking anyone out there if you have had

similiar damage done to you and if all sounds familiar and what you did to get

better. is there hope for us? do we ever get better or is the damage

irreparable?

>

> I need help please. I can't go on like this one more day. I have thought of

ending it all because of all the suffering. I thought having cancer was bad. I

thought not being able to drive or work because of a neck injury was bad but

this has it all beat. when you have no hope of ever getting well, when all has

failed, what is the point in going on. If all this went away tomorrow, I would

be fine. i dont' want to die. I want to live....but not this way.

>

> Can anyone help me, help us??? has this story sounded familiar to anyone

else??

>

> Thanks for listening.

> Take care and be well.....heaven help us all...

>

> Regards,

> Nanci

>