LOW LH, FSH, and Estrogen (and no general Endo forum)

[nawailohi]

Hi there,

I am a 36 year old woman. I have been experiencing menopause-like symptoms such as night sweats and hot flashes for years and decreased libido and vaginal dryness for the last year. That last one is what brought me in to my gynecologist two and a half weeks ago. He said that my symptoms sounded like those you would see in a woman with estrogen and testosterone imbalances BUT based on his physical exam, it looked like my estrogen level (at least) was just fine. (Apparently my labia look like I have plenty of estrogen.)  He thought it might be a thyroid problem of some sort so he ordered tests for estrogen, testosterone, progestin, TSH, FSH and LH...At least I am pretty sure that is the comprehensive list. I went in for the blood work that day -- roughly day 17 of my cycle.

He called me a week later and told me that my TSH, testosterone, and progestin levels looked normal but he was concerned because my estrogen level was very low -- below 15. He also said that my FSH and LH levels were very low -- 1.2 and 0.2 respectively. He told me that he doesn't know what this means... but that it could be premature ovarian failure (POF). He asked that I stop taking the pill (TriNesse) for the next month and redo the blood work on what should be the third day of my period. (While I have never missed a period, he suspects that I will once I am off the pill.) I finished the pack of pills I was on and my period started three days later. It lasted for five days and I am now on day seven of my cycle.

To make a very long story short, I am wondering if you have any idea if this sounds like POF or another disorder (Pituitary or Hypothalamus problems?) AND if you have any advice with regards to any next steps.

Just to make things confusing, I've listed some other (possibly related) symptoms below.
• heat intolerance and out of control sweating (actually seems like general temperature control problems but it is hot now)
• swelling in lower legs/ankles and hands (tightness in hot weather especially)
• increased acne - including carbuncles/boils/cysts on the face
• difficulty concentrating (I have been diagnosed AD/HD and have been on Adderall for a year and a half)
• dry dry dry and papery/peeling skin (with acne!)
• straw-like hair that tangles into mats if you look at it the wrong way
• hair loss - started over 2 years ago
• dry, cracking/splitting, ridged nails
• weight gain - including a strange new flabby/saggy belly
• this one is weird -- while I have gained 10-12 lbs over the last 7-8 months, my breasts seem to have shrunk. (almost a whole cup size)
• intermittent numbness in hands and feet (likely due to swelling)
• Frequent vaginal yeast infections (at least three in the last seven months)
• 3 hypoglycemic reactions/episodes in the last two months -- THESE ARE NEW AND SCARY
I know this is quite a handful but I would be so grateful for any advice or assistance you could offer.

Thank you,
S-

[Mars01056]

37 and going through a similar thing. I have PCOS and diabetes.  But now my FSH is 0.9 and my LH is 0.4.  I've easily gained 2 pants sizes this summer without any change to diet/exercise.  I get randomly dizzy.  I have a very hard time concentrating and even focusing my eyes. I'm tired ALL THE TIME and have strange muscle tightness/rigidity.  My lower extremities swell sometimes so bad that my ankles/feet won't fit in my shoes.  No one seems to know what's going on.  My NP and GP are both leaving the practice so there's no follow up there.  I have an endocrinology appointment in a couple weeks.  Hopefully she'll have an idea with this new FSH/LH info.  If not, the next stop is my OBGYN who is also a reproductive endocrinologist.

[Bobbyiah]

Hi my wife is dealing with the same issues and the endocrinologist isn't really sure what's going on, has anyone been able to get an answer if so please share.

[elpope123]

i too am experiencing these issues.  Any news on what you have?

[rumpled]

I would look into Cushing's syndrome. You have a lot of the symptoms for it. I had the cyclical form and it was not fun.

[melongalaxie1]

i am going through the same exact thing you are...26 years old. estrogen is at <7, progesterone <0.1, and fsh 1.2. ive gone to all kinds of specialists (rheumatologists, endocrinologists, gynecologists, neurologists, neurosurgeons, multiple sclerosis specialists etc) and all i can get for the past 4 years is a diagnosis of fibromyalgia, chronic fatigue syndrome, vitamin b and d deficiencies, and "well, something is going wrong with you, but i dont know what. go see a ___________" (and its usually an endocrinologist or gynecologist). im so frustrated at this point. i am about to go to the mayo clinic and i am hoping that they can figure out what i have. as far as my research is concerned, what we have sounds a lot like cushings disease. the only symptom that you and i differ on is the breast size changing. i gained 50 lbs in 3 months, so i gained there as well. the acne was a huge problem, but my dermatologist put me on a regiment of the antibiotic doxycycline (ive been on it three months) and the cream tazorac (it acts as a peel and helps with the scarring- your face will peel A LOT, though). nothing has helped with the weight, though. i have horrible striae and a buffalo hump. ive also broken out into shingles twice since may of this year, which is unheard of at my age. you should also make sure to get your vitamin b and d levels checked just to rule out crohns or celiac's disease, though weight loss is more common with celiacs. im not writing this to complain to you, just doing this to let you know that you are definitely not alone. and its not like there are support groups just for our symptoms! im sure theyve already told you you just have fibromyalgia or chronic fatigue syndrome, but dont just accept it as that alone....please. we pay these people enough for a concrete diagnosis, and its already hard enough to get a fibromyalgia diagnosis...it seems they give us that when theyve given up...i do believe its real...and i believe i have it. but i do not believe that fibro caused my reproductive system to shut down at 26, nor do i believe that it prevents my digestive system from absorbing nutrients, 50lbs in 3 months, so on and so on...anyway...sorry im on a soapbox...just frustrated. there are people out there just like you searching for an answer. dont give up.

[LivingInHope]

I would ask for an MRI of my pituitary, since evidently the doctor did not order one?  They should rule out any adenoma.

For the yeast infections, have you tried taking acidophilus capsules in addition to your other treatments?

You might look into the side effects of Adderall to see if any of your symptoms might be drug related.

Regarding the swelling, I recommend you get your doctor to rule out kidney problems and CHF.

I see you still have a sense of humor- look at your hair the wrong way, and it misbehaves? :0)

Have you been checked for diabetes?

Did the doctor check for free T 4 and T 3 or just TSH?  Sometimes, people get "hot" nodules on their thyroid that independently are emitting their own hormones and causing thyrotoxicity.