What now?

Lizajayne23

Please excuse me if I vent a little, but I'll try to limit it to the facts. Still, I'm very frustrated. My apologies in advance for the info overload, too. LOL

Ok, a little backstory... Very irregular periods, occasional cysts, and secondary infertility for most of my life. I was blessed with 2 children but no more. A doctor told me 10 years ago that it was PCOS, but I have no idea what blood work (if any) he performed at the time, and he only offered clomid which didn't help then to put me on the pill. Since I couldn't get pregnant and I had a few periods a year, I just didn't do anything.

Fast forward through several years of continued symptoms, when I began experiencing extreme fatigue (falling asleep when I sat down, even while eating) and gradual weight gain. THEN my hair started falling out and, of course, being a little vain, that's the thing that finally got me in gear. My family doctor checked my thyroid (after coercing, he wanted to put me on antidepressants) and I was diagnosed with Hypothyroidism. NO further or more in depth testing, just here's your levothyroxine and come back in 3 months. I did that for 2 years and although my levels eventually reached the normal range, I still experienced symptoms EXCEPT irregular periods. As soon as I started the levo, my periods began to normalize.

I started working out and working hard to lost weight and basically starved myself for months last summer to lose the 35 lbs. Usually 1200 calories and 1 to 1 1/2 hours exercise... until I couldn't do it anymore. I slacked off at Christmas, ate more during the holidays, and gained 7 lbs in 6 weeks. Since then, I've eaten 1200-1500 calories, depending on exercise, and I've not lost a pound in months. Or I've gained and lost the same 5 lbs over and over. I tried an experiment of a straight 1500 calories, no exercise and just regular daily activity, and gained a pound per week. And yes, I do weigh my food, but I was slacking on the coffee sugar/creamer measuring so we'll say 1600 since I have no more than 2 cups a day and was possibly underestimating 30-50 cal per cup at times.

Since Christmas, I have also lost half of my hair, my underarms and groin/tops of thighs have what feels like thicker, slightly darkened skin and coarser hair on thighs--not so fun this week when it's 97 and I want to wear a bathing suit. Also, I've noticed more thicker hairs on my face/neck and other areas. And despite exercising and not gaining any weight back, my waist has gotten larger instead of smaller.

So, I finally make an appointment for a checkup with my GYN and first off, she says that it couldn't possibly be my thyroid if my numbers are "normal", there's no reason to test it further, and suggests PCOS. Ok, so good, I'm finally ready to deal with it, tell me what to do. Well, yesterday, I get the call that all of my labs are normal. Hormones, normal. Thyroid, normal. Everything except liver function, which is elevated, so come back to recheck that in a month and have a nice day! Oh, and also, she pretty much said "suck it up" and get used to eating less than 1200 calories and exercising. When I asked well, what is causing my symptoms and what to do about my hair, the nurse said the doctor didn't make any notes about anything except the liver function check and she'd have to call me back. It's been 24 hours and no call back. >:-(

Seriously? I am just totally imagining my hair falling out all over, the dark patches, face/body hair, acne/extreme oiliness, memory problems, low body temp, fatigue and I'm not really starving myself or exercising, right? Plus the fact that I never got pregnant, in 10 years. (not that I want to now since I'm too old, but it's a major symptom of the bigger issue)

I'm totally at a loss and don't know what to do. I can't live like this and if I lose anymore hair, I'll be locked alone at home and become a shut-in. All of the symptoms fall under either hypo, PCOS, or both, but testing shows nothing is wrong.

So, any advice on what to do now? My family doctor was no help and ignored me for 2 years of crying about hair loss and also told me to eat less/and exercise more than I already was (and a push toward the Trim Healthy Mama diet...um, NO). He controls my thyroid prescription so I have no choice but to see him again unless I find someone else (doubtful). The only other option I can think of is to go to a dermatologist next month and see where that leads unless you all can suggest something.

desereereid

I understand your frustration with losing your hair! Although my situation was different, I had the same issues with hair loss and no doctors believed me when I told them what was happening to me. I had doctors tell me it was was my diet, or stress, but I knew something else was wrong. I had my thyroid tested multiple times, always came back normal. I finally got so frustrated with all of the symptoms and went to a specialist. I had a TON of bloodwork and tests done. Finally I was diagnosed with PCOS almost two years ago.

Prior to all of this, I'd never taken birth control. Well, my doctor prescribed a BCP called Sprintec and ever since, weight loss is MUCH easier and my hair loss has completely stopped. I only wish I'd have figured this all out sooner! I seriously cannot believe how much of an improvement I have seen simply from taking the pill. I would say, if you haven't tried taking a birth control pill for an extended period of time, to try it and see what happens. It took about three months before I noticed improvement. Another thing you might want to ask your doctor about is a condition called Congenital Adrenal Hyperplasia. Before I was diagnosed, my doctor thought that was what I had because most of the symptoms are very similar. It's not life threatening or anything, but can be similar to PCOS. However, because it's rare, a lot of doctors don't even think of it. Best wishes!

girlviernes

That sounds terribly frustrating. It doesn't seem like your doctor is on your side at all. Could you possibly see an endocrinologist or reproductive endocrinologist?

Regardless, I would make sure that you have the following things tested in your blood work: TSH, thyroid antibodies, T3, and insulin levels.

The coarse skin may be acanthosis nigricans - which would be indicative of insulin resistance I believe.

micheledavison39

I hear you on all of that! It took months of tests and exams and a cancer scare to finally be diagnosed with PCOS and then basically I was told there was nothing I could do except take the Pill (some of which I have had reactions to). Many doctors later, a diabetes diagnosis, non-diabetic diagnosis; more of the same thing so I started seeing an acupuncturist initially for back and hip pain but now she is working on my hormones and period. Since stopping the pill I have noticed a lot more hair loss on the top of my head (excess growth elsewhere though) too, Nioxin is great for it, I have used it for years; there is an external shampoo, conditioner and scalp treatment system and a vitamin that I am told is very similar to pre-natal vitamins that other people I know have sworn by.

I would also look for a new doctor that is willing to actually talk to you and listen to you and your concerns. The endocrinologist I was seeing was more interested in treating my so-called diabetes than anything else (come to find out, I am not and never was diabetic) so it may take time to find someone helpful that doesn't just want to push pills or get you out of the office. An OB-GYN that specializes in fertility might be a good bet too (I know you aren't interested in getting pregnant, but they may have some solutions for you.)

Lizajayne23

Thanks, guys. I asked the nurse what the doctor thought I should do now when she called with my test results and 48 hours later, she still hasn't called back, even after I left a message yesterday. I also requested a copy of the lab results in the message.

I've had TSH, free T4, free T3, tested and they are normal (on levothyroxine). She also tested LH, FSH, testosterone, and I can't remember what else. All normal. I didn't notice any sort of insulin tests and she said there is no reason to test for thyroid antibodies and I didn't notice or recognize it on the order, if she did.

I couldn't ever take the pill due to migraines and other issues, but that was a loooong time ago. That's one thing that I hate about taking the levothyroxine and a regulated menstrual cycle. Migraines have come back with a vengeance.

Unfortunately, our insurance made some major changes to cut costs and the biggest clinic with all types of specialists is no longer covered. I've not heard good things about the only one covered in this area. I'm considering a 2 hour drive to the closest city to see one there, if necessary.

leahraskie

See a different doctor. If you have dark skin rings around extremities that is a good sign that there is insulin resistance, you could always ask for a glucose tolerance test.

I was put on the pill and my hair started coming back, although it's still really thin on top. Been on it since 7th grade and I'm a college senior now, so if it's lost for the most part it'll just come back thin. There are lots of different combinations of hormones in BC now, some are low doses so you could ask if there is one now that fits for you.