Help me figure out a direction to go to figure out what's wrong with me?
November 4, 2009 10:53 AM   Subscribe

Paging Dr. House. Medical mystery involving girly bits and hormonal madness lurks within. Probably SFW.

YANMD, and probably YANAD, but my doctors are flummoxed and I'm desperate enough to go to the internet for help. I just want to know what the hell is the matter with me.

I'm 37 years old and I had twins in 2007. The babies were fine, but I ended up getting some sort of infection. About a week after the babies were born, I landed back in the hospital hemorrhaging with a high fever.

In spite of the hemorrhage, I was able to breastfeed to a point and did so until earlier this year. I didn't get a period until June but wasn't concerned because of the breastfeeding. In July, my period got wacky. I've been getting bleeding, at first just spotting and then like a regular period then back to spotting, for two weeks at a time. After two weeks of no bleeding, it repeats. After three months of this happening I got an appointment with a GYN.

The doctor ran some blood tests and found that I had lutenizing hormone (LH) and follicle stimulating hormone (FSH) in the normal range (I don't have numbers) but estradiol that was unmeasurably low. I got sent off for an MRI to see if I had a brain tumor, which I don't. Yay! In fact, the MRI results were entirely normal.

I was a little surprised about that, since several years ago I had an MRI done for a different condition and my pituitary was abnormally large. On follow-up, the gynecologist did a biopsy for uterine cancer and put me on a birth control pill - Lo-Estrin24. She said that there was little uterine tissue and said that I could have an atrophic condition linked to my low estrogen level. She also said that the Pill would regulate my odd bleeding, which it hasn't.

Along with the odd bleeding, I've also had fatigue, no sex drive at all, thinning hair, horrific night sweats (I soak the bed two to three times a night) and continuing weight loss. I've had night sweats since I was 29 but these are on a different scale of bad. I've lost almost 50 pounds from my pre-pregnancy weight, but much of that could be from effects of breastfeeding and being busy dealing with twin toddlers. My thyroid levels are normal. I'm being referred to an internal medicine doc to check me for lymphoma (!).

My first thought was premature ovarian failure, but the doc said that my LH and FSH should be higher for that. Some googling brought up the possibility of Sheehan's Syndrom (pituitary damage from postpartum hemorrhage) but the doctor said that I wouldn't have hormones in the normal range.

Other stuff that might make a difference:
-My short-term memory officially sucks. I thought it was just from sleep deprivation (twin babies and all) but as the twins have gotten older and I've gotten more sleep my memory has not improved.
-During my whole pregnancy I had hyperemesis.
-At the twins' c-section delivery I had a tubal ligation.
-My mother went through menopause early but after age 40.
-My dad's thyroid is having issues, just developed in the past couple of years.
-Was diagnosed with Juvenile Rheumatoid Arthritis at age 12. I flare a few times a year.

Where should I go from here? Besides being evaluated for lymphoma, I mean.

Thank you for your indulgence. I'm trying to be as clear and calm as I can but it's some work right now, believe me.
posted by anonymous to Health & Fitness (7 answers total) 1 user marked this as a favorite
Rheumatologist consult and possibly a reproductive endocrine specialist?
posted by fairytale of los angeles at 11:04 AM on November 4, 2009

If you don't know already, find out exactly what your thyroid levels are. Many doctors set the borders for normal wider than some experts think they should, so you may have an underactive thyroid despite being pronounced normal. Get the actual numbers, and then take them to an endocrinologist to talk about what those numbers really mean.
posted by decathecting at 11:27 AM on November 4, 2009 [2 favorites]

Have you considered lupus? It's often called the great imitator because some of its symptoms could be related to other illnesses. Difficult to diagnose, fatigue, hair loss, blood issues. Something to think about, anyway.
posted by misha at 11:49 AM on November 4, 2009

Yes. Thyroid levels and an endocrinologist.

And I wouldn't rule out that it's related to the tubal ligation --- check out Post Tubal Ligation Syndrome. The symptoms are worth a check and talking with your doctor about. PTLS as a diagnosis is still iffy in the medical community, and I am not a doctor. I am not saying that this is any way what you have, but the symptoms for what is termed PTLS might be something that rings a bell and can give you other treatment avenues to pursue.

On a personal note, I've had a number of still ongoing issues since my c-section, including some wacky period stuff. And I don't have an answer from medical professionals either. It's incredibly frustrating when there aren't any clear answers for something that is clearly wrong. I do hope it gets sorted out for you soon.
posted by zizzle at 11:58 AM on November 4, 2009

Thinning hair is, to me, a tipoff to see a good reproductive endocrinologist to get screened for polycystic ovarian syndrome (PCOS). I have this condition and it took about five years for me to get a diagnosis. Meanwhile, my hair was falling out in handfuls, I had unpredictable bleeding patterns, and I had those night sweats. From years of hanging out on the PCOS message boards, I think it's safe to say that no two people seem to have the exact same set of symptoms.

It's possible - and actually common - to have PCOS but for all test results to show normal hormone levels. IANAD, but this is what my gynecologist stated when mine came back completely normal.
posted by chez shoes at 12:29 PM on November 4, 2009

I'll second lupus as a guess. It does have that sort of everything but the kitchen sink type of symptoms, you've had an autoimmune disease diagnosis (JRA) and it can be hard to pin down. Do you take something for JRA flare-ups? (Usually it would be something that modulates the immune system.) If you do and your other symptoms disappear, that could be a sign of an autoimmune disorder.
posted by dances_with_sneetches at 12:36 PM on November 4, 2009

And, after posting, I would agree with chez shoes that PCOS is another reasonable possibility.
posted by dances_with_sneetches at 12:37 PM on November 4, 2009

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