strange results, can't find answers...any thoughts?

[LK9]

I am a 30 year old female. I have been having symptoms like joint pain, fatigue, weight gain, heavy painful menstrual periods, acne, hidradenitis, hirsutism, dry eyes and mouth, total loss of sex drive, and extreme loss of head hair for a long time now. I have seen 2 GPs, 3 Rheumatologists, 2 dermatologists, and 2 OB-GYNs. Unable to get referral to Endo because of "normal" lab results. No one can seem to figure out the cause of or give me a diagnosis for what is going on. My tests from rheumatology for lupus, RA, and sjogren's all came back negative. They said maybe I had fibromyalgia and told me to go back to GP. GP ignores me completely. I saw dermatologist for acne, she suggested maybe I had PCOS (even though I have regular, albeit heavy periods), gave me a referral to gynecology. They did a transvaginal ultrasound and said everything was normal, no cysts. Did have elevated testosterone though, they said "don't worry about it" (free testosterone level 3.9) They gave me some birth control pills to help with acne and heavy periods (Yaz) and sent me to have my thyroid tested. Came back and was told thyroid was normal, TSH 0.52 and Free T4 0.82. Basically I have been told that nothing is wrong and stop complaning. I feel terrible, I barely have the strength to get up in the morning. I am in pain all the time. My hair is falling out to the point where I fear being completely bald (bad enough I went grey at 20), my periods knock me down for 2 weeks a month. I don't what to do, or where to even go for help now. Any suggestions, ideas? Help!

[kitty9309]

Not that this covers all of your symptoms, but have you been tested for anemia? The heavy periods alone could result in anemia and contribute to fatigue and hairloss.

Specifically a Ferritin test as well as a CBC?

I also read that you can have PCOS without cysts.

http://www.pcosupport.org/medical/whatis.php

Hope this helps.

[LK9]

Thanks, yeah I have had CBC. I am looking at my papers now and it says that my blood count is normal. I don't think I have had a ferritin test? These docs won't tell me anything. I had to fight with them just to get a copy of my labs. I am a stay at home mom and my husband and I aren't  poor enough to get medicaid or anything like that so I have been forced to go to a local "indigent" hospital. Basically it is a part of the medical school downtown (UAB) and they send their students and residents there to guinea pig on all the poor people. Don't get me wrong, I am grateful to have that in this day and age or health care. Better than nothing, but not much. They just keep shuffling me to clinic after clinic and taking my money and telling me nothing is wrong. You are lazy and/or a hypochondriac blah blah blah.

I also have read that you can have PCOS without cysts. I think that they were making a long shot diagnosis on that one because I do NOT miss periods at all. I have very heavy ones, and apparently I ovulate ( I have a 13 month old daughter). Or at least I did once.

I approched a thyroid group because I have a family history of hypo (maternal grandmother and aunt). Many of my symptoms seem to mesh with hypo. But my labs are odd (low TSH and low free T4) but apparently near normal, so they won't retest or test further.

[laura1967]

Did they do any adrenal testing for cushings or addisons? They would have started off with cortisol tests. Usually a AM cortisol draw.
There are numerous hormones to test that are related to the pituitary-adrenal axis.

[LK9]

No, I don't think so. Don't see that one in the results or remember them taking anything in the morning. What are symptoms of those disorders?

[laura1967]

google cushings and addisons....they are both adrenal disorders. The symptoms vary depending on if you are hyper or hypo. Let me know what you think after you have read about these.

[ChitChatNIne]

WELCOME the COMMUNITY!

Cheryl

[llh45147]

I FEEL YOUR PAIN!!! I WENT TO ABOUT THE SAME AMOUNT OF DOCTORS THAT YOU HAVE BEEN TO WITH ABOUT THE SAME RESULTS. I REALLY HOPE THAT YOU FIND THE RIGHT DOCTOR FOR YOU THAT WILL ACTUALLY LISTEN AND MAYBE DO A LITTLE RESEARCH FOR YOU TO FIND OUT WHAT THE PROBLEM IS.

GOD  BLESS

LLH45147