Discussions By Condition: Endocrine conditions

Set of odd symptoms and I just feel BAD.

Posted In: Endocrine conditions 6 Replies
  • Posted By: hlynae
  • May 6, 2007
  • 06:34 AM

I'm 30 years old and have an "odd" set of symptoms. About 3 years ago I had an MRI because of extreme headaches and dizziness. My doc said that my pituitary was slightly enlarged and that it should be checked periodically, but nothing was done at that time. I've had headaches off and on (different from the migraines I've always suffered from) and about a year ago went to the doctor for them again. Because of some breast milk leaking I had been having for over a year (never thought much about it though) and my telling her about the slightly enlarged pituitary, she wanted to recheck it. So another MRI was done and again, nothing unusual. Bloodwork was also done at that point but apparently nothing was found because nothing was ever done. Fast forward to about 3 weeks ago. I was having sex with my husband and had the most awful pain in the back of my head. Had a headache and stiff neck for 2 days before I called my primary doc who told me to go to the ER. They did a CT scan and spinal tap, searching for blood, thinking there was a possible aneurism that had ruptured. Thank God that wasn't found but the ER doc referred me to a neurologist. She sent me for another MRI as well as an MRA to recheck the pituitary gland. So far I don't have the results of that back yet. I find that out on Monday.

But here's where I'm very confused. Almost everything that is going on with me can be traced back to something hormonal. That I know for sure. What I don't understand is why some of the symptoms are contradictory. They're as follows:

*Irregular periods - sometimes frequent and heavy, sometimes very infrequent and nothing more than spotting.
*Intermittent breast milk production (small amount most of the time)
*Breast tenderness that's very extreme
*Weight gain of about 10-12 lbs all in the mid section. I look about 5 months pregnant when I relax my tummy (and I'm normally a very tiny person) but I attributed it to recently quitting smoking. Not sure though.
*Starting to notice extreme hair growth in some places - tummy ("happy trail" area), inner thighs, chin, upper lip, and sides of face (not super dark but a few long, dark hairs and thickening of the lighter hairs to the point of being noticable), lower back, butt cheeks, the back of my upper arms, toes, and I even have 2 dark hairs growing on my chest. All of the hair seems to grow back really fast after plucking or shaving too.
*Recently I've begun to lose the hair on my head in gobs. Every time I wash it, brush it, or run my fingers through it I have a ton of it tangled in my fingers. A lot more than the "normal" hair that I know we shed from day to day. Thank goodness I have very thick hair! lol
*I've always had a round face with chubby cheeks but for some reason my face just looks fat right now. I have no clue if this means anything or not but it's a definite change in my appearance.
*I'm so tired all the time, yet I can't sleep.
*Rash/blotchy skin on the sides of my face & neck. (dunno if this is related to anything either)
*I went through a period where I had no sex drive, now it's through the roof.
*And of course the headaches.

That's all I can think of at the moment. Most of it seems to be definitely hormone related. But some of it really seems contradictory to me. Sometimes I seem to be producing too much estrogen and sometimes it seems more testosterone related. I'm very confused. I'm so afraid that the neurologist will tell me that the size of my pit is still within the high side of normal ranges and send me on my way. This is a set of symptoms that has been worsening over the years and now it's quite embarassing sometimes. I've been with my husband for 11 years but the hair growth makes me feel so shy around him because I know how noticable it is. I'm the type of person who rarely goes to a doctor unless it's something extremely painful or an illness that won't go away. But I also know when something is seriously wrong with my body. I don't understand how I could have such an odd set of symptoms and have doctors do one set of bloodwork, see things that are borderline high or low, and never recheck it. I don't understand how my pit can be "slightly enlarged" yet it not be cause for concern with the other symptoms. I've been told it could possibly be a pit tumor (prolactinoma because of the breast milk production but that doesn't explain the hair growth or hair loss), or possibly something with my adrenal gland but that has never been checked that I can recall. I'm confused, scared, and sick of feeling this way.

Thank you in advance for any help or insight on this. I would really love any suggestions on what to say to the doctor if I'm told "nothing's wrong" on Monday when I get the MRI results. What other tests should I suggest and where should I go from here?

Edit--I feel like I should also add that I have a couple of autoimmune disorders. I have psoriasis and fibromyalgia, though I highly doubt they have anything to do with all this. Also I was diagnosed about 8 years ago as being bipolar but I've done better for the last 3 years without meds than I did for the previous 5 with them, so I honestly don't think I am, although I do notice myself to be a lot "moodier" than usual lately. I think that's all of my ailments. lol

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6 Replies:

  • Reading through other posts I guess I should also mention my very dry skin. It's dry and itchy and sometimes I get a bumpy rash on the backs of my arms or on my legs. The one I described on my face is different though...no bumps just blotchy & itchy. Ok I really think that's it now. lol
    hlynae 1 Replies Flag this Response
  • I am sorry you are feeling bad. Fibromylasia is pretty bad in itself.Who diagnosed this disorder? Did you have a complete blood workup?Have you seen an endocrinologist? Please see someone highly recommended that works with these types of problems. Sometimes the edocrine system problems don't seem to show up on the medical tests, when we can actually feel something is going on in our bodies. Pursue, pursue, pursue. If you know something is wrong then don't give up.
    Anonymous 42789 Replies Flag this Response
  • Try this website for starters. It lists every endocrine disease.http://www.mic.ki.se/Diseases/C19.htmlEndocrine System Diseaseshttp://www.mic.ki.se/Diseases/C19.html#C19.700Pituitary DiseasesYour milk production is called galactorrhea. You could research your symptoms in a search engine, listing several like this:galactorrhea, weight gain, excess hair, And then if you find something in the search you want to eliminate to refine your search, do it like this:galactorrhea, weight gain, excess hair, -menMake sure the word follows the negative sign without any spaces.There is one pituitary disease called PROLACTINOMA.http://www.pituitarysociety.org/This is another website on the pituitary gland and it's disorders. Click on specific disorders to acess this part.http://www.pituitarysociety.org/public/specific/cushing/cushing_htmlThe five most common diagnostic body changes noticed by the patient and physician are as follows; a reddening of the face and puffiness of the cheeks called facial plethora; a distribution of body fat to the area above the collar bones, called supraclavicular fullness; elevated blood pressure or hypertension; thinning of the skin; muscle weakness, called proximal muscle weakness. Women may become increasingly hairy. Acne may develop and purple stretch marks (striae) may appear on the abdomen, thighs and breasts.Researching using some of your symptoms is your best bet to discovering what you might have. And it could be a constellation of disorders too. The pituitary controls many organs.http://csrf.net/Cushing's Support & Research FoundationThere are some photos on that site of people who had/have it.
    Anonymous 42789 Replies Flag this Response
  • Been diaganosed with bipolar, but demanded that I see a neurologist because I did not feel right. I had numerous side effects from the medications. My eyes felt like they were budging from my head as soon as they put me on medication. I feel numb and like my whole head is covered with drugs. Libido is decreased and I am not depressed. I am very sensiutive to medications, which is why I don't like taking drugs for my so called "bipolar". I know I have it, but everyone is different in regards to s/s and meds. Had MRI done and and it showed enlarged pituitary gland. Cortisol level was high (probably from the stress I was going through at the time). Also see an Endo MD, but he doesn't really do anything but order labs-last labs were fine.I am on no treatment for enlarged pituitary. I saw eye doctor and he said everything was ok.I would like second opinion on relationship between enlarged pituitary gland and bipolar-or do I have something else wrong? No definite answers have been given to me. I am also looking into a urine test that can specifically measure the neurotransmitters.thanks,c
    Anonymous 42789 Replies Flag this Response
  • If your cortisol was high then you probably have Cushings from enlarged pituiatary. There's probably nothing they can do for you. They could radiate it but it would take out the thyroid. cushings can cause all those problems. did they also check you for Graves disease?//
    Anonymous 42789 Replies Flag this Response
  • Hi I've been doing some research about different diseases and conditions because I too have some odd symptoms. I recently went to www.cushings-help.com which you might want to check out b/c alot of the symptoms you mentioned here kinda sound like this. I really like this website-the cushings one- it is very informative and there are really friendly people there who will answer all your questions. Cortisol levels being high and the pituitary gland being enlarged plus most of the other symptoms you mentioned could possibly be cushings. You could have possibly been misdiagnosed as having bipolar b/c with cushings I know there are personality changes so you might not have bipolar at all. I thought I had bipolar and was even diagnosed about 3 years ago, but I am thinking I was misdiagnosed b/c of all the other stuff I have going on. There are alot of diseases and conditions which look like bipolar and most people who are diagnosed as being bipolar actually have an underlying disease that is affecting their personality and it's not really bipolar. Hope that made some sense. Anyways, just thought I would share that with you and I hope you find the answers you need. I will keep you in my thoughts and prayers. God Bless!
    BrideToBe78 7 Replies Flag this Response
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