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Old 05-08-2008, 08:38 AM   #1
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loralei HB User
women's healthcare advocacy

Does anyone know of any good groups that I could get involved with? I am a 26 year old female who has suffered from many chronic non-lifethreatening illnesses. It's taken many years and tears to get actual diagnoses from doctors.

I consistently get the brush off if my lab work is "normal" or if I have a bunch of difficult to pin-point symptoms. I've been prescribed Zoloft and celexa, and then sent on my way. I've been told to just relax and destress. The doctors all seem to spend about 5 minutes per visit with me and don't even acknowledge my concerns. "Well if it doesn't go away in a few months, come back." They will throw some medicine at me to treat symptoms, but they NEVER both to look for a root cause for the symptoms.

I've suffered from depression, anxiety, IBS, an inner ear problem, a thyroid problem, unusually light and short periods, insomnia, fatigue, etc. etc etc. Now I' am starting to realize these problems are probably all related to one another due to a condition called hypothyroidism that does not show up my thyroid bloodwork.

Is anyone else as angry as me at the way they've been treated??!!!

Last edited by loralei; 05-08-2008 at 08:43 AM.

 
Old 05-08-2008, 09:49 AM   #2
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bleigh HB User
Re: women's healthcare advocacy

I think I probably am suffering from hypothyroidism as well although my labs don't show it yet. My mom and sister both have Hashimoto's and I tend to be following in my mom's footsteps. Fortunately for my sister, she was diagnosed quickly as a teen and has been able to get treatment for years. My mother suffered horribly for years before being diagnosed in her mid 40's. Doctors are quick to discourage this way of thinking although some of them have become more educated on this possibility. I think most docs are afraid of trying thyroid treatment without laboratory confirmation because of liability concerns. I did have a doc try a low dose of Cytomel for me (but it's also used for depression and chronic pain conditions). I did feel better symptom wise, but it caused my heart rate to go pretty high and I had to stop. You could try a holistic or alternative medicine doctor. Also you may find relief with dietary changes. I know there is a book about diet...I think it's called the Thyroid Diet. You could try it and see if it helps. I personally have found that a low carb diet helps me with several issues.....digestive upset, anxiety, fibromyaligia pain, PMS symptoms, lipids. For now, you may have to try a few things on your own as you already know docs want to throw meds at you. Keep a journal of your experiments so you'll be able to recall what works and what doesn't. I'm sorry you're having to go through all this frustration too.

 
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Old 05-08-2008, 12:20 PM   #3
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loralei HB User
Re: women's healthcare advocacy

Quote:
Originally Posted by bleigh View Post
I think I probably am suffering from hypothyroidism as well although my labs don't show it yet. My mom and sister both have Hashimoto's and I tend to be following in my mom's footsteps. Fortunately for my sister, she was diagnosed quickly as a teen and has been able to get treatment for years. My mother suffered horribly for years before being diagnosed in her mid 40's. Doctors are quick to discourage this way of thinking although some of them have become more educated on this possibility. I think most docs are afraid of trying thyroid treatment without laboratory confirmation because of liability concerns. I did have a doc try a low dose of Cytomel for me (but it's also used for depression and chronic pain conditions). I did feel better symptom wise, but it caused my heart rate to go pretty high and I had to stop. You could try a holistic or alternative medicine doctor. Also you may find relief with dietary changes. I know there is a book about diet...I think it's called the Thyroid Diet. You could try it and see if it helps. I personally have found that a low carb diet helps me with several issues.....digestive upset, anxiety, fibromyaligia pain, PMS symptoms, lipids. For now, you may have to try a few things on your own as you already know docs want to throw meds at you. Keep a journal of your experiments so you'll be able to recall what works and what doesn't. I'm sorry you're having to go through all this frustration too.

I found a doctor who doesn't believe thyroid bloodwork is always accurate and I feel better already on Levoxyl. It's amazing to me watching the kind of medical care that my boyfriend receives versus the kind of care I receive. They take all his ailments very very seriously. Then they shove an SSRI at me and tell me to relax.

 
Old 05-08-2008, 02:53 PM   #4
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Re: women's healthcare advocacy

There really is a difference in the way men and women are treated. I was once told to take antidepressants by an orthopedist, because I was crying, due to the pain that he was telling me I "shouldn't" have.

Found a new orthopedist. Had surgery. Funny, no more pain, no more desire to cry in his office.

 
Old 05-09-2008, 07:09 AM   #5
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loralei HB User
Re: women's healthcare advocacy

Quote:
Originally Posted by janewhite1 View Post
There really is a difference in the way men and women are treated. I was once told to take antidepressants by an orthopedist, because I was crying, due to the pain that he was telling me I "shouldn't" have.

Found a new orthopedist. Had surgery. Funny, no more pain, no more desire to cry in his office.
Wow. That is awful. I feel like this story is, sadly, not unsual enough. I find that sometimes female doctors are even worse than male doctors! I went to my female gynecologist complaining of breakthrough bleeding on the pill. She was like ok fine stop taking the pill. Then I went to a male gyno a few months later for a different issue. He explained to me why breakthrough bleeding happens, and he even drew a diagram of the uterine wall for me! Then he said it could simply be corrected by upping your estrogen for a few weeks. Nice. But the female gyno had a thriving practice and it took months for me to get an appointment, while the male gyno had hardly any patients.

 
Old 05-09-2008, 04:03 PM   #6
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Momof2sons HB User
Re: women's healthcare advocacy

loralei,

Unfortunatly this isnt an uncommon finding when it comes to women getting the health care they diserve. I suffered MANY bazzar symptoms throughout the years going from Doctor to Doctor with no answers, and "normal" test results. My symptoms included....Balance issues, muscle weakness and pain, heart symptoms where I would get all sweaty, near passing out, having to put my head between my legs to prevent passing out and breathing through it. Then started having severe reactions to anesthesia or any sort of sedation, that no one could explain, although I'd end up in ICU when they happened. I had what seemed like every test under the sun, including..complete cardiac work ups, MRA's of the brain and Caradids, MRI's and CT's of the brain,EMG/NCS for the muscle issues, MULTIPULE labs done, and nothing..ALL NORMAL, being told basicly "It's all in MY HEAD", but the symptoms continued to progress.
BUT I WOULDNT give up seeking answers, I KNEW something was wrong! I FINALLY found a Neurologist that believed in me, and although all her testing were "normal" she felt there WAS something serious going on, and sent me to a major medical facility(Mayo Clinic).
That's when my life changed dramaticly, I started with a neurologist at Mayo, and they ran pretty much the same tests that my neuro at home had run, and once again, "normal", BUT they didnt stop there, they ordered a muscle biopsy, and low and behold I was diagnosed with "Inflammatory Myopathy" which explained my muscle issues, then they sent me for balance testing, involving the ears, and hearing, well who ever had told me in the past "it's all in your head" , was partley right, I HAD BRAIN surgery! They found I had this Rare congenital defect in my inner ear causing the balance issues, but it took a specific type of CT scan looking for that specific thing. They did a Craniotomy making a 3" hole in my skull over my ear, then lifted the brain, and fixed this defect, and also discovered MOST of my skull base was ALSO missing! They made a "sling" of sorts, to hold up my brain.(I prefer to call it my "brain bra"!..lol) Then in that pre-op chest x-ray they found I had two nodules on my lungs, and followed them every three months with CT scans, at the 6th month mark, one had tripled in size, and the shape of it, and where it was and after PET scan felt it to be cancer. I went for surgery, and had part of my right lung removed, and by the Grace of God, it wasnt cancer, BUT was a rare type of infection! The day AFTER this surgery, while in the hospital I was sitting there, and I had one of my dizzy spells I got, where I got sweaty, and the Nurse came flying in the room, asking if I was ok. I said Yea, I just got dizzy, she said NO your heart Stopped!..Well it seems all these years, when I would get these "spells" as I call them my heart was taking "long pauses" causing my symptoms, I am NOW being evaluated for a pacemaker!
This is what I have discovered through ALL this experience....WE ARE our OWN BEST ADVOCATES! We ALL diserve the BEST healthcare! And ONLY WE can PUSH for that! Unfortunatly GONE are the days when ALL Doctors will do whats best for us! As it was mentioned in a previous post, these Doctors will push the antidepressents to get you OUT the DOOR! If Were not getting the answers we need, then we have to move on, NOT GIVE UP looking for that right Doctor! Good Doctors are hard to find, and NOT ALL Doctors are created equal, unfortunatly as I said WE have to find them. I went through MANY, MANY Doctors, before I found one that believed in ME, and was'nt going to throw up her hands and walk away, although all her tests came out "normal" she admitted it was beyond her testing capability, and sent me to Mayo, now THATS a GOOD Doctor in my opinion! They dont have to find the answers, but when they can admit its beyond them, and willing to send you to someone that possibly CAN fine the answers, in my book, thats a good doctor! I HATE to think what would have become of me had I gave up! I know my children are darn glad I DIDNT!
Ladies, its time I think WE change history, and start DEMANDING the best healthcare we ALL diserve! You dont have to be rude, or nasty, to get what we diserve, simply say, looks like I need to keep looking for that ONE doctor that has the Passion to find the answers, and want to help. We need to stand up for ourselves, and if were not getting what we need, then we go "Doc shopping" as I call it. Don't be intimidated by those white coats, and NEVER forget, THEY work for US, so WE can fire them, and move on! This is about OUR health, and well being! WE are the MOTHERS, SISTERS, WIVES, and DAUGHTERS of this world, if it wasnt for US, NOBODY would be here! ...So, I'd say WERE a pretty important part of this picture! Were certiantly worth the effort, the time and energy! We wouldnt stand by and watch this happen to your children, or parents, or some other loved one, we would fight tooth and nail for them! NOW its time to do the same for OURSELVES! Because WE diserve the BEST HEALTHCARE as well!
I'm sorry for going on this "Rant" but I have heard this same story from SO MANY women, including myslef, and I think it will only change, IF WE MAKE IT happen! Imagine the look on some of these Doctors faces, that have blown so many women away with their antidepressants, or telling them "Its all in your head", when you stand there look them in the eye, and say, thanks for your time, BUT I think I will continue my search for a Good Doctor with Passion! Hmmm...you just never know ladies, WE might CHANGE how we are treated by "SOME" of the medical community? And when their business is running a tad slower because of it, they may just look "in-word" and change for the better! There ARE GOOD Doctors out there, as I said, we just cant give up looking for them, CAUSE WERE WORTH IT!

I wish you ALL the best in your search, stay strong ladies, and DONT GIVE UP!
Take care, and GOd bless.
Annette

 
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