Need advice--Long

Shannon816 · 04-21-2007, 06:31 PM

How did you find out you had a thyroid problem?

The reason I'm asking is because I've had countless doctors suspect a thyroid problem for at least 18 years, but they cannot get anything to show on blood tests. A bit of a review on me. I've had problems with my periods forever. My doctors thought it was PCOS for sure, then they thought it "might" be PCOS. Finally a reproductive endo did bloodwork and a vaginal ultrasound 2 years ago. He said I had no cysts, my hormones were a tad high but not what you'd expect with PCOS, but my androgens were twice the normal amount. However, because I was having issues that would point to a blood clot (vison flunuations, dry eyes, varicose veins) I was not allowed to be on birth control again.

By some miracle, my periods have become regular for the first time ever. However, I've lost all my energy, I've gained a ton of weight very quickly and still having the vision problems (a four year ongoing battle), and hair is popping out all over. Last time I saw my endo was in December. Although he had done blood work two years ago that was "normal", he once again suspected a thyroid problem. He also suspected a blood clot because my leg with the vericose veins has balooned up and has pain.

These blood tests did show I have MTHFR, but still nothing showed up for thyroid issues. Due to the blood clotting issue with the MTHFR and my leg, we all agreed it was too risky to keep me on any sort of birth control. Then, the doctor got mad because he wanted me to take antidepressants and I refused. During my last appointment, I was having my period. I am generally in a foul mood anyway. I was having ovarian pain. my leg blows up even worse during my period, I was having stomach cramps, and anything above my waist fell like it was run over by a truck. I told him if he was in that condition, he would be down that week too. I didn't think I needed help with depression the rest of the time. If they would fix my health issues or at least tell me what is wrong and how to control it, I'll be okay. I did not want to mask any health issues without knowing what was wrong.

It just alarms me that so many doctors have suspected a thyroid problem, but refuse to do anything because nothing shows up in blood tests. My endo got mad when I didn't take his antidepressants, refused to answer any more questions, and told me not to bother coming back. I am in the process now of tryng to find a good doctor. In the meantime, I am trying to do some research on my own.

Is there another test or anything I can make them do that might show a thyroid issue? I know my doctor told me they treat thyroid problems with birth control, if you can't take them, is there anything else that might help? I am so tired of feeling exhausted all the time.

Any advice for how I should proceed with things?

saiph · 04-22-2007, 01:36 AM

Wow, your situation is tricky, but I'll pull out my best non-medical-professional-bull***t and try to diagnose you

Do you eat a lot of soy, by any chance? I read a study recently that said that soy can somehow trick your body into not manufacturing enough thryroid chemicals, but I don't know if it would show up on a blood test... don't remember where I read the study, but you might be able to find it if you look online... actually I just searched on google for "soy thyroid" and got a bunch of hits, including this one: http://thyroid.about.com/cs/soyinfo/a/soy.htm

Shannon816 · 04-22-2007, 02:01 AM

I stopped eating soy a few years ago when I read that could mess with your hormones, but even before then, I wouldn't say I've ever eaten excessive amounts. It was always some here or there.

LOL about my situation being tricky. That's a kind way of explaining it. Thanks for that. My health has gotten to the point my doctors treat me like I'm a freak of nature. They are stumped, don't want to admit they are stumped, so this all somehow must be in my head. No one realizes why nothing is showing up in blood tests though. That's why I've had to pretty much take the research up on my own. I will look further on the site you provided. Thanks for looking that up for me.

mommavia · 04-24-2007, 07:32 PM

Quote:

My endo got mad when I didn't take his antidepressants, refused to answer any more questions, and told me not to bother coming back.

Last time I checked, an endo isn't the best person to be prescribing these...isn't their area of expertise the endocrine system???

And birth control pills to treat thyroid problems? Who is this quack? Thyroid problems are treated with thyroid hormones, not estrogen and such. Sometimes you can have a throid condition that doesn't fall into the textbook definition of it. Keep pressing onward, find a doctor who will listen to you. I recommend finding an endo who specializes in thyroid disorder/dysfunction, they are up-to-date on the latest in research and everything, it can make a HUGE difference in your treatment and outcome as oppossed to being treated by your primary care.

Also, check out the sites listed in the "Useful Thyroid Sites" sticky, they should help you out!

Cynthia

Shannon816 · 04-25-2007, 04:42 AM

Quote:

Originally Posted by mommavia

Last time I checked, an endo isn't the best person to be prescribing these...isn't their area of expertise the endocrine system???

And birth control pills to treat thyroid problems? Who is this quack? Thyroid problems are treated with thyroid hormones, not estrogen and such. Sometimes you can have a throid condition that doesn't fall into the textbook definition of it. Keep pressing onward, find a doctor who will listen to you. I recommend finding an endo who specializes in thyroid disorder/dysfunction, they are up-to-date on the latest in research and everything, it can make a HUGE difference in your treatment and outcome as oppossed to being treated by your primary care.

Also, check out the sites listed in the "Useful Thyroid Sites" sticky, they should help you out!

Cynthia

Well Cynthia, it's a long story really. I actually got the doctor's name here off the board, and he's supposed to be good. I have a lot of health issues, a boatload of seemingly unrelated symptoms my doctors all think are linked together, but they don't know why. Some think it's genetic, some think I just got unlucky to have a bunch of problems at once. The endo sort of became my main doctor out of neccesity. He was referring me to different doctors to get different tests done to find out exactly what is wrong. No other doctor wanted to be in charge of all this because it's very, very complicated. He was the only one willing at the time to help, so it all landed on his shoulders.

Then when it reached the point he couldn't figure it out, instead of saying "I don't know", he pushed the antidepressants and got mad when I didn't do what he told me. That's when he told me not to return.

And yes, he was going to try my high androgens with birth control pills, but I couldn't take them. When he did the last thyroid test, he also mentioned birth control pills for that, but told me he wasn't sure if I could take them since they believed I had a blood clot in my leg. No blood clot, but since I have the MTHFR, we all opted for me not to take any BCPs from now on anyway. He wouldn't really discuss thyroid treatment options with me, but from the things he said, it was either birth control or doing nothing.

Looks like I need a different doctor. I am running out of local options. The doctors I haven't tried either aren't taking new patients or the waiting list is a mile long. Everyone we know has begged my family to consider Duke or the Mayo Clinic at the point, but we were really hoping to find a doctor who could refer us to one of those places if we decided to do that. In the meantime, I probably really should find another endo or something. Heck, this guy wouldn't even explain the MTHFR to me. He sent a form letter to me and told me to look it up. Trust me, people shouldn't have to read on the internet how they might have a stroke or a heart attack. He was so mad about the antidepressant thing he wouldn't discuss more after that.

It's just that at this point, I am rather fed up with doctors. These past 5 or 6 years, my health took a downward spiral. Thankfully things are a bit better now, but things got BAD for a while. I got to see the really ugly side of medicine. I know I need to find another doctor, but at the same time, I don't feel like dragging myself through what I go through for nothing either. I guess it's time to do some research on finding a specialist or something.

mommavia · 04-25-2007, 10:24 AM

Wow. It sounds like the endo is frustrated that he can't fix you, but he is also throwing in the towel...not cool. I would look into going to one of the large medical facilities, I have a great endo who was affiliated with UNC Hospitals but is now on his own (Dr. Michael Thomas at Carolina Endocrine, www.carolinaendocrine.com). I highly recommend him.

I know you don't feel like dragging yourself to another doctor, but you need to. It's for your health. Yes you'll have to explain your medical history, and you may not find just the right doc the first time, but in the end it will be worth it. Trust me. As a thyroid cancer survivor I have seen my share of doctors, my case has been quite unusual and they have had to consult others on how to handle my case at times. Having a doctor that you can communicate with I feel is key to treating your ailments. Hang in there, girl, an end to your suffering is near!

Cynthia

Shannon816 · 04-27-2007, 12:06 AM

Thanks for the link Cynthia. I certainly will look into your doctor. I live in TN, so NC wouldn't be that far to travel if I had to. At the very least, I guess we could always call or e-mail a doctor out of state long distance to see if they think they could do something before going to that much trouble to visit.

Your speech sounds a lot like my mom's.

I know I need help. As one of my doctors once told me, they probably don't have a patient who needs help more than me. Yet, it's awfully hard to continue going when you are treated so poorly. I've had to get up the motivation to go before, I need to do it again. I know I'll eventually go back. Right now, I just need to feel like there is a purpose to seeing a new doctor. I will look up the doctor you mentioned to see if I should go about talking to him.

mommavia · 04-27-2007, 10:39 AM

If you need a reason to see another doctor...you will get better if you are persistent! I know how frustrating it is to be treated by some one who doesn't appear to care. Get copies of your records and fire them. No patient should have to put up with poor treatment. We wouldn't put up with it from a restraurant or service in a store, there is no reason to put up with it from the person who is helping your care for your body.

I am sure there has got to be a doctor in TN that you can see, it would be a good haul to get to Raleigh for you. You could always look into MD Anderson or Johns Hopkins too.

Cynthia