I just need unbiased people to help me think about this and you ladies are super smart and I'm hoping you can help. It's long and probably boring, but I'm feeling really stuck and confused and could use some guidance. Ever since having kids my hormones have been super out of whack (they were out of whack before kids, but it's way worse since) to the point where it was almost unbearable the week I was ovulating and right before I got AF. In Feb 2014 I went to see a NP that specializes in women's health issues and she ran a bunch of blood and urine tests on me. After the tests were ordered she went MIA and after spending months trying to connect with her, I just got the results myself. Pretty much everything is out of the "normal" range - my body doesn't produce estrogen, progesterone, or testosterone, my cortisol levels are super high, etc. I initially took the results to a PCP but she couldn't read them and sent me to my OB. My OB couldn't really read them either, but started me on low dose BCP (lo loestrin, which is just 10mg estrogen) to see if it helped kind of temper my symptoms and it did (this was Nov 2014) help. As 2015 kicked off I was on effexor and wellbutrin for depression and anxiety, adderall for my ADHD, and BCP. I was exhausted ALL the time. Like I could sleep 10 hours at night and nap all day if allowed and I never felt rested. My therapist thought it was really weird that I was on 2 stimulant medications and still felt like that, so she referred me to get a sleep study. In March 2015 my lack of a sex drive because an issue and I weaned off the Effexor to see if it helped. It was a HORRIBLE experience and aside from the expected mental/emotional side effects from weaning I also got pretty physically ill too. It took me about 6 weeks to not feel like I was dying, and I still get little "zaps" in my brain two months later that I'm pretty sure are from weaning. In April I had a sleep study and aside from not having sleep apnea they can't really tell me anything and aren't sure what to do next. Earlier this week I saw an endocrinologist and she doesn't really thing anything is wrong because none of testing that she's done has come back "alarming" and she thinks I should see a neurologist because I get headaches and that's probably making me tired. She also doesn't think I should be on BCP or testosterone (just started 2 weeks ago to help with sex drive) because she likes things "simple" but doesn't have any other ideas or solutions for my problems. I feel like crap all the time and yet no one thinks anything is wrong with me. I've weaned off both the ADs and am taking vitamins that are supposed to help with my exhaustion and depression (Vit D, folate, iron). But I feel like nothing I'm trying is really working. My current list of symptoms when I'm not on ANY medication horrible exhaustion lack of sex drive still produce breast milk (I stopped nursing almost 3 years ago) night sweats (drenched) mucusy stools trouble sleeping at night, but not during the day mood swings headaches depression anxiety trouble regulating body temp (I feel super sick if I get too hot) my BP and pulse are higher than they've ever been inability to concentrate
I'm kind of at a loss. The sleep doc thinks something is wrong but doesn't know what and doesn't know how to figure it out. The endo kind of blew me off because none of my symptoms pointed in a certain direction and most of the labs she ran are fairly normal. My PCP is awesome, but is moving next month and the doc she's referring me to will be on maternity leave. Maybe I'm kidding myself that feeling better is ever going to happen and everyone else feels like this all the time and I should just suck it up? Do I keep pushing and if so what do I push for? I'm tired off feeling this way and I'm pretty sure my family is too. I feel like I'm failing at life because I can't function like other people seem to. And I have multiple doc and therapy appts each week and don't seem to be getting anywhere. WWYD? I don't feel like I'm a hypochondriac, but the endo kind of made me feel like I am. I don't think it's too much to ask to feel decent, but I don't know how to do this anymore.
I take Effexor and have for a long time. I don't like it but stopping is worse than weaning as that makes me ill and non-human. I have trouble regulating my body temperature and often get night sweats. I also have sky high prolactin levels which can also be from the Effexor. My sex drive is low and I have a highish pulse because of anxiety. I am basically saying that some of that could have been only because of the medications? Could you look into alternative medicine? I hope you start getting answers and know that you are not alone.
I would have them run tests for early menopause. Not sure what all they check, but probably FSH. A lot of your symptoms sound like early menopause to me.
MittenState, that's really interesting. I haven't taken Effexor in about 2 months but have been sick (both from weaning and a sinus infection) almost that whole time so I'm not sure I would even notice if things had changed. I'm pretty sure if I do go back on something it won't be that because weaning was so horrible I never want to do it again.
OP I have no other advice other than to keep fighting for a proper diagnosis. The best thing I ever did for myself is to push for a proper diagnosis of my health condition and am SOOOOO glad I did and have never felt better once I started treatment.
I don't know what meds you are still on but some of the ones you listed can cause some of your symptoms. Imaging for the pituitary even without elevated prolactin. Your docs may be covering this and I don't know all your results.
I do know that with some of the symptoms you listed - you can get some crappy docs who will chalk it up to being "emotional". So move on if you get that vibe.
For God's sake don't go to a naturopath. They will certainly have several diagnoses and recommendations...but you can't trust them. Woo. FOS.
I had a lot of these symptoms when I was on Effexor. Wellbutrin didn't really help with curbing the sleep and body temp regulation issues.
Keep fighting to discover what is wrong. Trust your instincts.
FWIW I went off all my psychiatric meds and really concentrated on exercise, stress management, sleep, and diet. It took time but I really feel amazing physically and mentally. I did this with the support of a physician and therapist. I am very into natural medicine and wholistic life stuff ... I may be mostly psychosomatic but I don't care.
Not saying this would be recommended or helpful for you but it changed my life. My philosophy was that changing my lifestyle may not be a medical cure but it certainly wasn't going to hurt.
I feel like sound a little crazy after reading that. I am a huge supporter of meds and modern medicine so don't take it as a recommendation to quit your meds and start yoga. It's just food for thought.
ijack, I'm sorry that you're dealing with this. Is the endo a reproductive endocrinologist? I wonder if seeing an RE would be better than seeing a regular endo.
I had a lot of these symptoms when I was on Effexor. Wellbutrin didn't really help with curbing the sleep and body temp regulation issues.
Keep fighting to discover what is wrong. Trust your instincts.
FWIW I went off all my psychiatric meds and really concentrated on exercise, stress management, sleep, and diet. It took time but I really feel amazing physically and mentally. I did this with the support of a physician and therapist. I am very into natural medicine and wholistic life stuff ... I may be mostly psychosomatic but I don't care.
Not saying this would be recommended or helpful for you but it changed my life. My philosophy was that changing my lifestyle may not be a medical cure but it certainly wasn't going to hurt.
I feel like sound a little crazy after reading that. I am a huge supporter of meds and modern medicine so don't take it as a recommendation to quit your meds and start yoga. It's just food for thought.
Would you mind talking to me more about this? What kind of changes did you make to your diet? How did your body handle weaning off the effexor? I think weaning off effexor was a really good move for me, but it's also causes some issues that I can't seem to get past. I've been off effexor since 4/2 and even though I was working out before that just fine, now I feel like I'm too weak to do anything and once I get hot I feel so sick I just can't continue. I know the yoga helps, it was helping my mood previously, but I'm so frustrated right now. I don't know if I just need to work through it, or if something is really wrong (when I'm working out and get overheated continuing feels like a really bad idea). Did you work with a doctor or anything to make these changes? How did you know what to do? I'm really willing to try almost anything to feel better.
You're not crazy. I would keep trying to find a doctor who takes this issue seriously. Did they check your FSH because it sounds similar to early menopause?
You're not crazy. I would keep trying to find a doctor who takes this issue seriously. Did they check your FSH because it sounds similar to early menopause?
They haven't checked it this round, but they did when I was TTC #2 (so 5 years ago) and I was on the verge of menopause then so I'm assuming I'm there or very close now.