Sorry in advance for the length of this. Some of these sound JUST like what others have posted, so I'm praying for an answer.
I'm really at my wits end, and hoped that someone here could help. I am a 26-year-old, 274 pound, 5'3" female. I am sexually active and have a copper (non-hormonal) IUD. I don't smoke, and only drink about 1 time a month. I don't use drugs of any kind, though I did smoke pot in college, about 4 years ago.
I've been having disruptive and fairly severe health issues for a very long time. I would say the very first symptoms started to emerge 6 or 7 years ago, when I was a sophomore and junior in college. I began having severe mood swings, feeling "crazy", like I was losing control of myself and drifting away. It was like looking at my life from behind glass, and being pulled farther away from myself by some kind of tide.
So, of course, the doctors started me on all kinds of pills for mental health disorders -- ranging from depression to anxiety to bipolar disorder. Mostly, the pills did nothing or made me feel worse. Some of them made me sick. I was exhausted and I started struggling to do the work I needed to do in school. My grades slipped a little, but I thought nothing of it since they were still solidly in the A-range. I figured, "anybody who felt this way would struggle." But things only got worse. I gained a TON of weight when I was put on Lithium, and I started struggling to breathe. I was easily fatigued, weak, and hungry constantly. I didn't want to do anything but sleep, and in fact I lost two jobs because I would fall asleep totally at random. I was tested for narcolepsy, sleep apnea, etc -- and most of the tests were negative because I was unable to actually sleep in the doctor's office. They decided it COULD NOT be narcolepsy, but they medicated me anyway. I couldn't afford the Provigil they wanted to give me, so I had Adderall. Of course, it made me nervous and more anxious. I couldn't eat, but I still wasn't losing weight. I had peaked at 285 pounds and was holding.
The mental issues got worse. I couldn't focus. I thought I was just crazy, thought about committing myself. And then somewhere along the way it got a little better, and I reapplied to law school. I left my ex (who wasn't helping) and moved to a new place. I was still sick, but not tired anymore. I thought I'd be okay.
But since then, things have just gotten worse and worse. First came the exhaustion and the pain. My joints, tendons and muscles ache like crazy. I feel like (after sitting for 5 minutes) I've been stuck in a teeny plane for HOURS. It makes me panicky and man does it hurt. Walking doesn't hurt at all, and walking and stretching make the pain much better, but only for a few minutes. This symptom got worse and worse as the months passed. It went from being just my legs to my hips, back, neck, arms, and now my fingers, jaw, and toes. Okay, I thought. Well, we'll work with that.
My doctors thought I had hypothyroidism. I wasn't eating, but couldn't lose weight. I was in pain. But the endocrinologists turned me away after the first round of testing, saying the tests were normal and "fat people just had pain". I had one tell me that the brain fog I feel, the feeling that I can't focus or concentrate, was due to being fat, because it "slows you down." And I believed her...except in the last 6 months I have started losing a little weight here and there, but the pain is worse.
Low impact exercise hurts too. Swimming hurts so much I cry. I have kept going to doctors, but they all say the same thing -- it's weight. Finally I told one who listened and did a ton of tests. She considered my problems as a whole -- that I can't think, that I feel distracted by TINY disturbances in my environment such that I can't function (it's taking me AGES to write this and I'm not sure it makes sense, because I can't really focus on it or remember what I've said), that I had pain everywhere, screwed up periods, that all my food tastes like dirt or sand, that I'm hungry and crave food, but when I GET it, I don't want it or can't eat much. That I'm nauseated and have other bathroom problems. I mean it's like...I'm just a big old ball of symptoms.
She did the tests and told me the CAME BACK NORMAL, but today I looked again (I just had 18 more vials of blood taken to test for autoimmune disorders, since I have psoriasis and that may have a connection), and one of the tests she said was normal was my free testosterone. Normal level, says the test, is 0.1 to 6.4 pg/ML. Mine is 9.8 pg/ml!
Okay. So now I'm frustrated. I have excess hair growth and pain. I'm constantly too hot. My muscles are weak. The symptoms are getting worse and worse and worse, the pain is debilitating, I can't think. At the last doctor's appointment, my blood pressure was high for the first time EVER (138 over 90), and when she took it, I got a shooting pain in my arm. I told her, but she shrugged it off.
In the last 3 months I've had "phantom smells", usually like bleach or chemical smells, sickeningly sweet or burning. Yesterday it happened again. I smelled gasoline and bleach, and then anise. My fiance couldn't smell it at all. I got a sudden stabbing pain in my neck, under the right side of my jaw. It arched down my neck and I got cold. I was shaking and panicked, my heart was pounding. It felt like a panic attack, only I was totally calm. It shot up, throbbed sort of like when you accidentally hit your finger with a hammer. I got a little scared, and I couldn't think. My brain got cloudy and I felt really far away, like the apartment was full of steam. I couldn't really see (I've been having contact problems, or eye problems. My eye doc THOUGHT it was allergies, but it seems connected to these spells) and I couldn't think. My fiance asked me what I wanted to eat -- and it was like I literally COULD NOT think that far. I could hear what he was saying, and process the question, but I couldn't answer it. I got dizzy, and then things started to get more normal, and I just felt like I'd been hit by a car. I was shaking and dazed, for about an hour afterwards. Then it went away.
I am so tired of this. This isn't my weight, come on now. You don't smell things that aren't there because you're fat.
I'm scared, really really scared. The doctors aren't listening really, and I'm worried we've waited too long. My rheumatologist listens, but I'm nervous that it will be too late and serious damage will be done before she can help me. Not to mention my schoolwork is seriously suffering.
Does anyone recognize ANY of these symptoms? What have you guys done when a doctor doesn't listen? Why would she say the tests were "normal" with that elevated testosterone level??
There are MORE symptoms, but I literally can't remember them all. I wrote them down, but don't have the list in front of me. I can find it if anyone needs a "complete" count.
The rheumatologist thinks this is autoimmune. My mother thinks it could be Lyme. I don't care WHAT it is, I just want to feel like a person again.
I'm sorry. I know it's long. I'm just so discouraged.
(Also, hi everyone.)
The following user gives a hug of support to paintedparrot: GramyT (10-18-2012)
Paintedparrot, I read your post. Sorry so slow & very sorry for your issues!
I'm no doctor (to put it mildly), but your elevated level of testosterone stands out to me, too, also excessive hair growth, pain, feeling constantly too hot, etc. My mind sure does go to endocrine problems and GYN problems as possibilities---but of course there could be others. Plus, you must be worried about what role your multiple meds might be playing...
ENDOCRINOLOGIST. How do you feel about this doctor? Is there another you could see, if needed? Gee, I mean, he KNEW you're on anxiety & depression (etc.) meds., and so many of those are absolutely notorious for weight gain and difficult side effects. But one big question seems like, Did he test for OTHER endocrine conditions BESIDES hypothyroidism?
MEDS. What dr. prescribes your meds, a mental health professional? Have you made a timeline of your symptoms vs. your med start dates? (More on that idea below.) On your drug printouts, you could highlight side effects that seem germane. (Example: can any cause "phantom smells"?) Then force a discussion of whether the meds are helping or harming...
RHEUMATOLOGIST. I too think psoriasis is considered autoimmune. Is this the doctor who took all the blood for add'l tests? Did those tests come back?
YOUR PERIODS. You didn't say what's off (but you don't have to say). Have you seen a GYN? Given disrupted periods, elevated testosterone, feeling hot, and weight gain, I'd definitely want to.
ALL YOUR LABS. Do you have copies? If not, it makes sense to get copies for your personal files.
WHEN DR. DOESN'T LISTEN. Yep, I've been there, too. I used to jump ship too fast, without having a plan in place. But now that I'm older, I'd recommend organizing lab results, creating a timeline, reading (on elevated testostorone, etc.), and boiling down your concerns to a few pithy issues (doctors love brevity). Then pick the dr. with the best overview (do you have a PCP?). If you don't have a PCP, then the doctor you're most comfortable with (is that your rheumatologist?). Discuss with whichever dr. you chose: should you REVISIT any specialist (like an endocrinologist)? Should you see any NEW specialists (like a GYN)? If yes, in WHAT ORDER?
On your TIMELINE, you don't need full sentences, only fragments. If you can fit it on a single page, that would be great. You could start each timeline entry with a date, then a symptom or a med or a lab result (noting all abnormal results). Then append a comment to each timeline entry to convey if still true (like, you're still on that med, or you still have that symptom).
At end, you could summarize your concerns. e.g., which conditions have been tested for? Which specialists to see again, or for first time? Med review?
I hope you touch base when you read this. Again, I'm sorry you're getting roughed up on so many fronts, and I encourage you to keep working thru all this. Wishing you clarity & better days ahead! With my best wishes, sincerely, Vee
I think one of the issues my be PCOS (poly cystic ovary syndrome) which sounds worse than it is, but could be causing some of the issues - including the testosterone level and interupted mensus. I have it and there are meds that can help. A good gynocologist would know the best things to do. As for your other symptoms, I do think it's likely to be autoimmune. Psoriasis can become Psoriatic Arthritis and other things. I would have that checked out. I wish you the best of wellness in your journey that we are all on!