Can you help me think this through? Health related

[ijack]

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.

[mskitkat]

My advice is to just keep finding doctors. I have been blown off with my health concerns by more doctors than I can count. An allergist I was seeing for a different reason was the one to finally figure out what was wrong with me. It sucks, and I'm sorry. The worst is not being believed. I had a doctor tell me I needed a therapist, not a medical doctor.

[womet]

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.

[imojoebunny]

Keep trying different doctors. They are so specialized these days , they have a hard time seeing outside of their box (understandable). If all else fails, try getting an appointment with some place like the Mayo clinic (they have other places like it in a lot of cities). I have three friends who had chronic sickness that really impacted their lives, who finally went that route, and they were able to figured it out pretty quickly, and get them treatment.

[ijack]

May 21, 2015 10:40:35 GMT -5 womet said:

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.

nope, just a regular endo. Why do you think a RE might help?

[mich1]

Has anyone ever looked at your thyroid? Most of the symptoms you've posted can be attributed to this, and sometimes just looking at TSH levels isn't adequate, you need to look at T3/T4 as well.

It seems to me that with everything out of whack, you need to look at some sort of 'controlling' hormone. My best guess would be to consult with an endocrinologist (not necessarily reproductive). With all your reproductive hormones so screwy, something is directing this outside of what you'd think.

SO has a pit tumor which produces prolactin for him. It has fouled up levels in every freaking hormone in his body that his doctor has looked at. Production of prolactin in males is not a good thing, but it has fouled up his thyroid, testosterone and some of the hormones that maintain bone structure and has caused osteopenia in a 55 year old male. I'm not saying that this is what you've got, but it sounds like you need to look further than 'locally'.

[arch01]

Well, you know my story-I'm on testosterone for the exhaustion and sex drive. Lately though it's gotten worse (and I feel that it has something to do with the gel vs. cream and how I react to it), but I'm going back to my GYN this summer whom I adore to have her run another full panel. My headaches have gotten better since I started wearing a mouth guard for teeth grinding at night, but they're still there...and my anxiety is starting to become a more regular thing. I know where that's coming from though.

I'd look for another doctor-I agree with womet, a RE might be a good place to start. Have the previous blood panels been for all hormone levels?

[tine]

I'm so sorry you're going through this. It seems like the NP was on to something before she went MIA - at least she was testing the right things. Could you find someone else who specializes in women's health issues that may be able to help? I agree with keep going to doctors until you find a solution.

[womet]

May 21, 2015 10:46:11 GMT -5 ijack said:

May 21, 2015 10:40:35 GMT -5 womet said:

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.

nope, just a regular endo. Why do you think a RE might help?

I just think that an RE sees these issues more often an a regular endo. Just a thought.

[drloretta]

I would go either with another endo (who will actually listen to you, WTF with this one). I can see someone recommending an RE, because your symptoms are related in some ways to gyn issues. But I've seen some REs who are real cowboys, and their focus is on getting you pg, so that might not be the best route.

HUGS

[audry80]

I am so sorry you are going through this. I would recommend getting your pituitary gland checked and your prolactin level tested. Mine was tested when I was having bad headaches, they were checking for a tumor. www.nlm.nih.gov/medlineplus/ency/article/000336.htm

[Deleted]

I would go to another endo. Possibly a RE, but one who isn't solely focused on getting people KU, there are some that focus more the whole system.

[womet]

May 21, 2015 11:20:32 GMT -5 @foodielicious said:

May 21, 2015 11:16:32 GMT -5 @ruralrabbit1 said:

I would go to another endo. Possibly a RE, but one who isn't solely focused on getting people KU, there are some that focus more the whole system.

btw if you go this route, check your insurance.  Many insurance plans (most?) don't cover fertility and if you go to a reproductive endocrinologist, you may get it flagged and have to spend time proving that you're not there for fertility.

I agree with checking your insurance. I don't have fertility coverage through my policy, but it covers the testing for diagnostic purposes. And that's really what you need.

[Deleted]

I've got hypothyroidism that we're treating despite my tests being normal-ish. My symptoms feel better with treatment, the treatment is very low risk/no side effect, so we treat in part by tests and in part by my feelings and experience.

I'd try another endo and I'd stress that you know this isn't an "easy" case. You need someone that wants to work through the puzzle with you and find the weird diagnosis, because the easy obvious shit isn't what you've got going on. It really does sound hormonal, though.

[lurknomore]

Some of the symptoms you describe may be consistent with early menopause. Has anyone ever looked at that? I don't have much to add except to throw it in the bowl for consideration.

Sounds rough. Hang in there and I hope you get some answers soon.

[dr.girlfriend]

Have you made it clear to your docs that you're still lactating? Not to play internet doc, but lactation plus some of your other symptoms sound like pituitary dysregulation to me. I wonder if your endo had reasons for sending you to neurology that she didn't make explicit.  I would definitely follow up with Neurology. 

[aurora]

Believe me, not everyone else feels that way all the time. Don't feel bad about advocating for yourself to find a solution.

[lys]

Ditto the Pituitary check (my sister had similar problems and had a pit tumor)
Also consider a trip to a major medical clinic -- Mayo Clinic etc.

[jerseyjaybird]

I don't have any advice, really, but what you're experiencing isn't "normal" and you deserve better care than you're getting.

If push comes to shove and you can swing it, I'd consider a trip to a Mayo clinic---where all of your specialists can talk to each other, instead of you scurrying back and forth among them. Big hugs. This sounds like a lot to manage. 

[ijack]

May 21, 2015 10:46:56 GMT -5 mich1 said:

Has anyone ever looked at your thyroid? Most of the symptoms you've posted can be attributed to this, and sometimes just looking at TSH levels isn't adequate, you need to look at T3/T4 as well.

It seems to me that with everything out of whack, you need to look at some sort of 'controlling' hormone. My best guess would be to consult with an endocrinologist (not necessarily reproductive). With all your reproductive hormones so screwy, something is directing this outside of what you'd think.

SO has a pit tumor which produces prolactin for him. It has fouled up levels in every freaking hormone in his body that his doctor has looked at. Production of prolactin in males is not a good thing, but it has fouled up his thyroid, testosterone and some of the hormones that maintain bone structure and has caused osteopenia in a 55 year old male. I'm not saying that this is what you've got, but it sounds like you need to look further than 'locally'.

my T4 is normal, as is my prolactin level (which I don't understand at all if I still have leaking milk).

[ijack]

And thank you ladies. I think I really just needed to hear that I'm not crazy for wanting help. When I saw the endo I saw a fellow and a more experienced endo and the fellow seemed to want to do more investigating but the other one talked her out of it. They're supposed to "follow up" with me based on the results of the blood work they did earlier this week. But it seems weird to me that they did an estrogen test - I'm on BCP right now so obviously that number will be skewed. And the cortisol test needs to be done at a certain time of day and that wasn't taken into account. I'll try and find another endo - this was through our university system (which I think is fairly good) so hopefully that won't be too hard.

[mich1]

I really would suggest you consult with an endocrinologist at this point and take your test results. The new doc will likely want to get his own levels from his own labs (SO's did this, after he got sent from his PCP after getting a high prolactin level). His tumor is benign, it just jacks around with all his other hormones. Another gland that could be screwy is your adrenal gland, as this also controls some of the things you have problems with.

If you live in a small town, I REALLY suggest you go to a major medical center. Mayo, if it's near to you is a good choice.

[jennistarr1]

May 21, 2015 13:58:47 GMT -5 ijack said:

May 21, 2015 10:46:56 GMT -5 mich1 said:

Has anyone ever looked at your thyroid? Most of the symptoms you've posted can be attributed to this, and sometimes just looking at TSH levels isn't adequate, you need to look at T3/T4 as well.

It seems to me that with everything out of whack, you need to look at some sort of 'controlling' hormone. My best guess would be to consult with an endocrinologist (not necessarily reproductive). With all your reproductive hormones so screwy, something is directing this outside of what you'd think.

SO has a pit tumor which produces prolactin for him. It has fouled up levels in every freaking hormone in his body that his doctor has looked at. Production of prolactin in males is not a good thing, but it has fouled up his thyroid, testosterone and some of the hormones that maintain bone structure and has caused osteopenia in a 55 year old male. I'm not saying that this is what you've got, but it sounds like you need to look further than 'locally'.

my T4 is normal, as is my prolactin level (which I don't understand at all if I still have leaking milk).

I actually have lactated since 14 and my prolactin was always normal

[mich1]

May 21, 2015 10:47:36 GMT -5 arch01 said:

Well, you know my story-I'm on testosterone for the exhaustion and sex drive. Lately though it's gotten worse (and I feel that it has something to do with the gel vs. cream and how I react to it), but I'm going back to my GYN this summer whom I adore to have her run another full panel. My headaches have gotten better since I started wearing a mouth guard for teeth grinding at night, but they're still there...and my anxiety is starting to become a more regular thing. I know where that's coming from though.

I'd look for another doctor-I agree with womet, a RE might be a good place to start. Have the previous blood panels been for all hormone levels?

From what I can tell, there is a HUGE difference as to how testosterone is absorbed through the skin.  It's highly variable and SO tried the gel, the cream and the patches and could not get a consistent level.

I now have to inject him in the butt with it every 2 weeks.....but his levels are much more consistent now, along with exhaustion and sex drive.

[arch01]

May 21, 2015 15:29:51 GMT -5 mich1 said:

May 21, 2015 10:47:36 GMT -5 arch01 said:

Well, you know my story-I'm on testosterone for the exhaustion and sex drive. Lately though it's gotten worse (and I feel that it has something to do with the gel vs. cream and how I react to it), but I'm going back to my GYN this summer whom I adore to have her run another full panel. My headaches have gotten better since I started wearing a mouth guard for teeth grinding at night, but they're still there...and my anxiety is starting to become a more regular thing. I know where that's coming from though.

I'd look for another doctor-I agree with womet, a RE might be a good place to start. Have the previous blood panels been for all hormone levels?

From what I can tell, there is a HUGE difference as to how testosterone is absorbed through the skin.  It's highly variable and SO tried the gel, the cream and the patches and could not get a consistent level.

I now have to inject him in the butt with it every 2 weeks.....but his levels are much more consistent now, along with exhaustion and sex drive.

I haaaate the gel. I liked the cream but my damn insurance decided that the cream wasn't going to be covered anymore. I need to explore my options with my doctor in June

[ijack]

jennistarr1 - do you have other hormone "issues" besides lactating?

[jennistarr1]

I do now, my thyroid...but even that is real borderline...what was your t4 when they tested it, did they do the tsh. Some doctors medicate at numbers other docs consider normal, there us a movement to change the normal range

[ijack]

They just did T4 free this week and it was 1.13ng, no TSH.
Last year when I had it done the results were
TSH 1.59 mui/l
T3 free 2.9 pg/ml
T4 free 1.1ng/dl
reverse T3 15ng/dl
(all "normal" according to the reference range listed)

[jennistarr1]

I keep reading your list of symptoms here are some thoughts...

I think some of those symptoms are symptoms of other symptoms...but what is the underlying factor, what is driving all that? Some could be medication related but something made you seek medication

What about female stuff like cysts or pcos?

[ijack]

No to cysts and pcos, but my body has never really produced progesterone and I've always had very short cycles (21-24 days) with a short luteal phase, and needed progesterone supplements to get and stay pregnant both times.