Did You Know Florinef Is A Low Dose Estrogen?

[tinkerbella]

Did you know Florinef is a low dose estrogen?

I found out this interesting fact today, you may already know it but I have a hard time searching things here. I've been bleeding actually started a year ago the doc, had no idea why I had become estrogen dominance... They didn't know I had been on florinef...and had to stop due to very high BP. the linning of my uterus had become pre cancerous and had to be removed. The lining as no one wanted to do a full surgery on me with my vital signs. I was bleeding for the whole summer and none of the hormones would stop it, it only flared my pots. I landed in the hospital three times with my iron dropping to 4.

Now i just had a cortisone shot in the butt for my back and started florinef and I'm bleeding like crazy, brusing, migraines, having hyper allergic reactions, rashes when I go in the sun. My gyn calls tonight and I ask about florinef and she tells me yes it can mess with woman's cycles or bring them back!!!!!! And then she tells me she's had woman who have had cortisone shots who will get periods. I tell her I had one almost a month ago, but I don't remember when I started bleeding....I write everything down but was too tired to write that.

Now, the florinef was what really helped me not pass out at night and now I know I can't take all the side effects. I had a ttt test and right after the dr said I have to fax your dr right away and you need to talk to him right away. He was on vacation came back today. I could barely understand a thing she said as I was trying not to toss my cookies. I have appointment tomorrow with the cardio to see what we will do.

Anyone else have this happen to them on the florinef?

Also, my heart rate has dropped really low when it was really high over 100 all the time. My last visit with the cardio I told him I was going brachy why would this happen suddenly? I also wasn't able to be tilted fully as I was going to throw up so would that change the results? I was so sick after the test I couldn't even ask questions, as I needed a basin to throw up in and all they could find was a bag. I think all labs should be have basins nearby. The fellow pusing me in the wheelchair I wanted to scream slow down this is not a roller coaster, do you understand I'm motion sick right now....

I really think my life is a movie at times.... Florinef has estrogen. how do men feel about that?

So now I need a uterine biospy in two weeks. I don't know about anyone else, but I'm reaching my saturation point...........I'm just getting too tired of of putting out all the fires around me all by myself lately.....

But, tomorrow, I see my babies and It's my Fake it till I make it day......and I need big HUGS from a little boy and a little girl who have been on vacation.

That's all I need, then I'll be ok till next week...

Blessings and Love to all~

BellaMia~

[MelissaCrystal]

I had no clue! Been having some hormonal weirdness lately so thanks for letting me know! I've been bleeding every day, for over 3 months. It's light, but really annoying because I can't figure out how to make it stop. Me and my doc are working on it.

[tinkerbella]

I had no clue! Been having some hormonal weirdness lately so thanks for letting me know! I've been bleeding every day, for over 3 months. It's light, but really annoying because I can't figure out how to make it stop. Me and my doc are working on it.

My gyn said some woman are very estrogen sensitive, and even flax seed has it in it and many foods. they all add up especially if there is cancer in your family or if you have hormomal issues.

BellaMia~

[Jan]

I had no idea either.

I went off the pill in February and am now in menopause. So no more bleeding at all for me and still taking .2mg of Florinef.

After reading this post, I read up on Florinef. It says that when on estrogen therapy, the Florinef may need to be decreased and then increased when going off the estrogen.

I didn't know, and didn't do that. And to be honest, feel much better not having cycles anymore.

I really hate reading all the side effects of Florinef because I don't think I would be out of bed without it. My doctors and pharmacist always insist that it is really quite safe and that those warnings you get with the med are for the more heavy duty steroids in the same class. I want to stick my head in the sand and believe them.

[erik]

I did not know florinef was estrogen inducing... I have heard that about anabolic steroids but didn't expect it from the "glucocorticoid/minercorticoid" aspect of fludro. I definitely felt the "mood effects" (hormonal stuff) as my body adjusted to it. Although I did not start knitting or watching Oprah while taking it, I did have extra "feelings" at times (which is rare . Luckily that passed after a few days!

As a side-note, a family member had high estrogen level and this was attributed to extra soy in her diet for many years trying to keep protein up as a vegetarian (she now strictly avoids soy after having cysts removed and attributed to the high estrogen)... I have heard most soy is "estrogenic" (though some forms are available which are not). I have no idea how valid that assertion and concern is, but some people have are weary of it too, at least if their body is on the high-estrogen side already.

I will probably resume fludrocortisone and hope it's side effects go easy on me. As to the estrogen issue... I figure I have such a wide safety margin in my masculinity that it is of little concern Well, at least I talk a good game, anyway

[potsgirl]

Bella,

I have been unable to tolerate Florinef so far, even at a 1/4 of a .1 pill, so I can't relate to the drug's side effects. I just wanted to encourage you to hang in there, and hopefully they'll figure everything out and get you on the right meds. Please let us know what the cardio says today, and the outcome of this situation. You are always so loving and kind to others, you're in my thoughts, and you deserve a break!

Cheers,

Jana

[Sophia3]

i no longer can tolerate soy but the prepackaged, junk food soy is terrible for women as we have no idea the true estrogenic properties ("nutrition bars" ? Soy burgers, other fake meats, shakes,pills , other things)

Tofu is eaten in Asia but only in tiny amounts as garnish in soups.

Somehow Soy has become trendy and not good for women except in natural foods in SMALL amounts

Nobody drank soy MILK years ago either..so I would never eat that stuff all day long.

It's a shame what gets promoted as natural when it isn't or good for us cause it's natural..when it isn't. Poison Ivy and asbestos and radon gas is 'natural' so you really have to read up on things.

Website are notorious for promoting things..as are some shows packaged to look like 'fake talk' but really infomercial.

We've gone from not enough info society, to overdose info with agendas, fake studies, hype, and fear mongering tactics over taking common sense. (first step, cut back on the news and HOW you get your information~~ most all news lives to scare people)

But back to Florinef, I DID know it could interfere with estrogen supplements and women have to sometimes cut back on it.

sorry to meander off track but it happens when your mind is not great with short term memory and focus.

not great with short term memory and focus.

[dsdmom]

I guess I'm confused - are you saying florinef is actually estrogen? Because I'm pretty sure that's not the case. Its possible that it can mess with your cycle since I'm on prednisone and it being a steroid can change a woman's cycle. Just one of the many side effects. I just don't want to confuse people about florinef. Do you have any links to information about why you believe it to be estrogen?

[tinkerbella]

Back from cardio............ I can't get off the florinef right now. I can go 0.1 one day the 0.2 the next day... he said the real decision will be up to my gyn as it would be unacceptable to bleed. Hysterectomy, could be an option if she decides that's an option, and of coure I know his rules. NO STANDING UP WHILE HAVING SURGERY! DR FOR anesthesiologist, have an arterial line put in, everyone talks to him before touching me. He's willing to allow me to have surgery, but I know she won't touch me. Right now I'm going to have to weight out the side effects verses what will happen if I don't take this med. It's made me sleep at night and not fall and pass out. I'm the only patient who has problems with all meds. So, this may only happen to a few med sensitive others here.

My ttt test came back with bad results, but he feels that I had been so sick the night before and concentrating on trying not to toss my cookies throughout the test, so to speak that my super high blood pressures did not fit the bill. My neuro thought I may be failing more....and wanted to add more meds that my cardio find not acceptable for me. He also, doesn't want to add one more thing that I'm allergic to. HE was really impressed that I ONCE WAS MARIA CASTELLS MD...... Patient, AND WANTS ME TO GET IN TO SEE HER ASAP...he was very open to what I HAD FOUND OUT HERE SAID THE more we get everything else under control, you're pots will be under better control.

We are still planning to see how I can start a support group at Newton Wellesley Hospital.....YES!!!!!!!! He's going to give out my name and # to his patients to at least get started that way. It's between Boston and Worcester. That will be something to focus on that is good, positive, along with cleaning out my life and simplfying my life.

I have to ask the gyn in an email the questions about the florinef that dsdmom asked. I wrote what she told me on the phone. I will write her, but she is going away on vacation. Will let you know, maybe I'll call the drug store...I'll be having a biopsy early Sept. just to play it safe...

I'm sooooooooooo tired....I need a nap now.

Oh before I nap, I guess for now I've got to tolerate all of this and was feeling mad. My daughter and grand babies came with me today and entertained the office. I have to hold on to the memories of them playing with my new walker and making everyone laugh. My granddaughter wanting to go in with me but I said I needed to be private to listen and she said you mean he has to look at your privates? LOL!!!!!! Once again we all had a good laugh....We make the most of the times we have together....I must remember days like today, when I feel like I just can't do it one more day, because there's a little girl and a little boy who

he found some trucks to take home and said I love you nannie. And the phone just rang, my daughter dosen't know how my grandaughter called me but, she called to say I'm sorry I hit you today nannie, I really love you. Then she started singing the love you song that I taught her that when she was tiny. I used to sing to it to my kids when they were little and now I'm all *SMILES*

Hope you are all well and glad that florinef works for most people around here.

Love and xxxxx's,

Bellamia~

[dsdmom]

BellaMia -

Just wanted to add to please keep us updated about a support group in the Boston area - would love to hear more about it!

[It'sMyLife]

My back broke out bad while I was on Florinef and my period came a week early also. I also had my typical menstrual migraine but it lasted the whole two weeks I was on the med!! I did not fair well with the hormonal effect of Florinef.

It was my understanding that this medication does not contain estrogen but effects how your body either produces it or uses it.

[tinkerbella]

BellaMia -

Just wanted to add to please keep us updated about a support group in the Boston area - would love to hear more about it!

I sure will.....

[tinkerbella]

Darcy~

I'll find out for sure in September as now I need a endometrial biospy. Like I had said before, she said it was a low dose estrogen.

Maybe, just maybe I misunderstood but I'll tell you it's doing to me everything hormones ever did to me and more.

I'm suffering terrible..... I'm bruising everywhere, swelling, rashes, migranes every day, mood swings, like PMS x's 100, sweats,

hots worse than ever......and crying over everything. But then again every thing is going wrong and I'm just plain tried as i'm allergic

to all the beta blockers. I'm tired of everything in life getting screwed up and I don't have the energy to straighten all the messes out any more.

I can't begin to list all the stuff that has gone wrong.... I will start right now visualizing a whole new start of things getting better. I will take control here

and let go and let GOD!

BellaMia~

[tinkerbella]

Went for my biospy today and asked the gyn again about cortisone shots to the hip and lower back and florinef and she told me that they metabolize in the body to a low dose estogen. Some not so lucky women become menstral again. I've got to have an ultrasound done to rule out pre ca cells again as this happened last year to me... Then I have to talk about what we need to do when we increase the florinef.

Blessings to all,

bellamia~

[It'sMyLife]

Thanks for sharing!

[tinkerbella]

YOU'RE VERY WELCOME.....It's amazing what we put into out bodies and what it can do...She's from a top hospital in Boston that has a medical building in Brookline. This gyn has told me so many intersting facts about meds and blood work not coming out right on hormones that other doctors never knew. Like you must be off them for 30 days before checking for the EB virus and things like that. So I guess when in doubt check with the maker of the hormone or med about the facts...

By the way, what a great pic you have as your icon. You look like a happy family.

Blessings and Love,

BellaMia~

[Maxine]

Thanks for information. I didn't know that about florinef.

I'm long overdo for my gyn visit. I have now missed a couple month's periods, and I'm 50 years old.

This reminds me that I need to get my hormones checked--- . So far menopause symptoms seem mild.

Some doctors warn about florinef for EDS patients because it could cause BP spikes, and possibly aggrivate possible vascular complications.

I was prescribed the drug, and the first dose caused a headache, so I decided not to continue, and use more conservative measures.

The neurologist I saw at the CC suggested I NOT use florinef also.

Thanks Again!

Maxine :0)

[tinkerbella]

maxine,

are you a fainter?

I' can't take bb at all. I'm having a rough time

right now.

We're backed up against a wall right now...

Now I'm waiting for the results of the biospy..

Last year they found pre cancerous cells and they used

very strong hormones to make me bleed them out and stop the build up.

I never realized that hormones and I DO NOT MIX ANd and I'd like to

say a few unkind words to my last guy of 8 years that kept saying

he'd get fixed and know wonder I kept getting sicker and sicker. my

Neuro said my woman and pots just don't mix well.

BC pills does terrible things to womans bodies...

Hey, I like your new pic.... one day I'm going to learn how to do that.

take care~

Bellamia~

[It'sMyLife]

YOU'RE VERY WELCOME.....It's amazing what we put into out bodies and what it can do...She's from a top hospital in Boston that has a medical building in Brookline. This gyn has told me so many intersting facts about meds and blood work not coming out right on hormones that other doctors never knew. Like you must be off them for 30 days before checking for the EB virus and things like that. So I guess when in doubt check with the maker of the hormone or med about the facts...

By the way, what a great pic you have as your icon. You look like a happy family.

Blessings and Love,

BellaMia~

.

Thank you! That is a pick of my mom, my daughter and me on my DD 2nd b-day back in April. We were on the swing on our backyard deck. It's a pleasant memory. But, we couldn't get my DD to smile for anything. lol It was making us laugh.

Very interesting about the EB test. I've never heard that. I tested pos twice in college which is when my POTS Sx first started actually.

[Maxine]

Thanks BellaMia,

I changed my pictue to a Zebra because on the EDNF website for EDS support uses Zebras to spread awareness. Doctors are taught that if they hear hoof beats, think horses----not Zebras. They are not taught to look outside of the box and think it might be something different.

I'm sorry your having so much trouble BellaMia, and I'm praying your biopsy comes out normal.

I'm not a fainter, but have near syncope all the time. My BPs get very low. I've had a few really bad attack when I had tunnel vision. I came very close to passing out then and had really bad heart flip flops. I can't be without my beta blockers. I know the florinef would probably help with the OI, but I can't risk it with the EDS and vascular issues I have.

Take care of yourslef, and please keep us posted.

HUGS,

Maxine :0)

[tinkerbella]

thanks Maxine,

I don't know what EDS is could you explain it to me as when I google it nothing come up. Thank you also for the prayers. I'm going go take my meds and come back as I'm cramping like crazy. Didn't feel a thing yesterday, but today is a whole new story. lol!

bellamia~

[tinkerbella]

GOT GOOD NEWS TODAY!

BIOSPY CAME BACK NORMAL!!!

ULTRA SOUND WAS ALMOST NORMAL.

THERE'S A SIMPLE CYST so if I do not hemmorage for a year I'm safe enough for 1 year.

everyone thought I looked great today, BUT THEY WERE SO NICE TO ME.

I TRIED TO EDUCATED THE ULTRASOUND PERSON, and where it was a friday she didn't want

me to go home and worry all week end so, she had someone read it at 4:00 pm before I went

home.

THEN, THE DOCTOR, called with more details..... I was sooooo HAPPY, HAPPY, HAPPY!

I DIDN'T THINK I COULD GO THROUGH what I did last year.

thank you for all you support friends!

BellaMia~