Friday, August 27, 2010
A moment of self-pity
If you have been a long-time reader, you know that I am constantly fighting a battle against unexplained fatigue. No matter how much sleep I get each night, I wake up feeling unrefreshed and unprepared to tackle the day.
Doctors have misdiagnosed me with narcolepsy. I've seen neurologists who have suspected M.S. My primary care doctor has screened me for anemia, Lyme disease, thyroid disease, and treated me for a B12 deficiency. No luck.
After feeling like I've been given up on, I took matters into my own hands and scheduled an appointment with an endocrinologist. (Why my doctor never suggested this to me years ago, I have no idea.)
Last week, after waiting three months for an appointment, I finally saw the endocrinologist. She studied my previous blood work and medical history. She told me she suspected I had one of two things. One thing--Congenital Adrenal Hyperplasia-- would explain the fatigue. The other--Polycystic Ovarian Syndrome--would not.
She ordered the appropriate blood work that was needed for a diagnosis. I crossed my fingers that this was it. This would finally give me an answer I've been waiting for for ten years.
The blood test results are in. I have Polycystic Ovarian Syndrome, or PCOS. I am really disappointed that my fatigue remains a medical mystery. Actually, "devastated" is the word I would like to use--but I'm afraid it's a little too dramatic for some people. I know people are going through much worse. But I can't help but shed a few tears today in frustration for what I guess could be a lifetime of unexplained exhaustion.
I guess there is still a chance that the PCOS is causing the fatigue... but my endocrinologist does not think so. She was pretty quick to rush me off the phone when she called with my results. I need to see her "in three months if I wish to discuss in detail." Great. I seem to be the only one in a hurry to get this all figured out. It is INCREDIBLY frustrating.
The icing on the cake is that PCOS is linked to infertility issues. As someone who wants to be a mother one day, that's something I cannot even wrap my head around just yet.
To treat PCOS, my endocrinologist suggested that I go back on birth control pills. I stopped them four months ago to see if my fatigue lessened at all off Yasmin (actually the generic: Ocella), a pill which I've heard terrible things about. Not sure which pill I will try next. Waiting to consult my gynecologist before I start taking the one my endocrinologist recommended.
Stay tuned.
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20 comments:
*big hug*
I'm so sorry to hear this! Maybe, oh maybe this IS the cause of your fatigue and there's some hope it will get better. :( I'm sorry you have possible fertility issues ahead of you too. That's something I would never want anyone to have to go through. I hope you get some answers soon! <3
I'm so sorry. Bad news is bad news, no matter how you look at it. :-(
The good news, however, is that there is a world full of women with PCOS who are chasing kids, and they can offer a lot of experience and knowledge. You may have to do some research so you can take control of the situation (instead of waiting for doctors to do it), but it can be dealt with.
::hugs::
Oh no! :-(
I wouldn't wait three months to get an appt with the doctor to explain the diagnosis in detail. I would call up and make an appointment NOW.
Thanks, ladies. And KT, the earliest I can get in to see the endo again is mid-October. I guess I have to sit tight until then.
Oh my gosh, I'm so sorry! I'm sorry you've learned you have this condition -- and that the doctor rushed you off the phone. What the heck?! How rude and unprofessional. I can't believe that. Ugh.
Just quickly googling PCOS I learned that one of the symptoms *is* fatigue! So that's weird the endocrinologist was quick to deny the connection.
I hope that you hear some answers soon and that you can meet with another health professional who can offer you some support and solutions.
Thinking about you! xoxo
First, I want to kick your endocrinologist in the ear for rushing you off the phone. What a supreme asshole move.
Secondly, of course this is devastating. Don't feel like you're being dramatic -- this is a big hurdle for you in your life, and no one else is entitled to pass judgment on what you're feeling.
Third, I am hoping as hard as I can for a happy ending for you.
If you feel devestated, then it's NOT too strong a word!
I'd book that appointment, and start doing your own research in the meantime, and go see your gyno. Maybe a different type of doctor will be able to offer some temporary relief while you're waiting?
Hugs.
So sorry you didn't get the full answer yet. Not to be nosy or presumptive, but did your endocrinologist (or other docs) test your Vitamin D levels (it's likely that they did)? I hope you get them tested or ask about the results -- I study Vit D for my PhD and I always think of it first, especially since it is related to fatigue. Be well!!!
*hugs* Hang in there. I wish I could help, but I am glad you keep pushing for answers. So many people don't.
Sophia, my vitamin D levels are actually slightly above normal. I am exploring one other option right now... the endocrinologist mentioned the only abnormal lab result was testosterone, which was low. After googling "low testosterone in women" I came back with (guess what?) FATIGUE as the most common symptom. I called back for the exact level and it is VERY VERY low. 0.031 with normal being between .50 and 2.0. The nurse said "The doctor is on top of her game, so if she didn't make the connection, I seriously doubt that it explains the fatigue." I said, "Well, I am no endocrinologist, but my research says otherwise. Can I at least discuss this with the doctor?" I was informed she wouldn't be back in the office until Wednesday, so I will most definitely be calling her next week. So beyond frustrated with these doctors!
:( I'm sorry. Stuff like this totally sucks.
Good for you for taking charge, though, and insisting to speak to the doctor again about the vitamin D.
Have you considered seeing any sort of alternative medicine practitioner?
I know exactly how you feel. When Dan & I were trying to conceive our 2nd child I was told I had PCOS. (http://www.mominreallife.com/2009/02/happy-diana-humpday-holy-crap.html)
It explained a lot of mystery ailments (specifically the acne and fatigue) and I learned I was lucky in some areas (some women suffer weight problems, hair growth, and hair loss).
When it comes to the infertility PCOS can cause problems but you may not have as serious of a case as others do (You aren't an overweight bearded lady!) and you may have some luck....I'm about to hit my 6 month mark on this natural pregnancy.
I understand it will take a little getting used to, but have hope!
I also recommend this site (http://www.pcoschallenge.com/) It's like 20sb for PCOS women, quite helpful!
Lady, you are allowed to feel devastated. Just because there are people out there suffering more than you are does not diminish your right to feel sad or upset. I ox you times a million.
It's always frustrating when doctors are vague or ambivalent--and so many seem to be!
I had an endo tell me that I may or may not have PCOS in relation to the miscarriages, but that they couldn't do a formal diagnosis (what?!), but she did put me on Metformin for a while, which seemed to do the trick as far as keeping/sustaining this pregnancy. I've read a lot of success stories about PCOS pregnancies, so hold on to that.
As for fatigue, I was never told that PCOS had anything to do with it, but it's starting to look like it might the more I look into it. I hope you get more solid answers from your other doctor, and if you don't, do get a second opinion somewhere.
Keep your chin up, girl. Hang in there!
I'm sad that this doesn't explain everything but hopeful that it means you're one step closer to getting a diagnoses. And maybe the PCOS is the cause of the fatigue. From what I've heard about it, symptoms vary pretty widely. Keeping you in my thoughts!
Saw your tweet retweeted by @JanePitt (so I couldn't reply). I hope you find a decent endocrinologist! I have recently tried North Hills Endocrine and haven't been completely frustrated, but I am not in love yet. And the fact that every time I move doctors, the next appointment is 3-6 months out? Beyond not cool. Much luck and hugs to you.
I'm so sorry to hear about this. :( I guess the good news (which isn't really good news) is that you at least know what MIGHT be contributing to the fatigue. Maybe find a new endocrinologist - one who won't rush you off the phone quickly and ask you to schedule an appt in three months. Find one who can work with you now so you can start seeing what to do next. Maybe if you tackle it now, you can prevent side effects, such as infertility.
Because, honestly, you're going to make the best mom EVER. And I want to see that happen. (SO, yes, do it for me, if nothing else. Ha!)
I realize this was posted a while back, but I'm a new reader (hi!), and really wanted to comment on this.
Obviously, I do not know you, your medical history, or all of your symptoms. (Also not a doctor, hee.)
You mentioned that your only abnormal lab result was extremely low testosterone, but your doctor diagnosed you with PCOS?
The hallmark trait of PCOS is HIGH levels of testosterone. So I hope you are seeking a second opinion -- not just because your endo seems very unreachable and unprofessional.
Best of luck to you.
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