do you have a hormonal imbalance? or been tested?

[lizajane]

trying to pinpoint some "issues" i've had since dylan came along and would love to hear your story. thanks!

[brittone2]

I have PCOS and had a heck of a time getting diagnosed because I am not overweight and don't have a lot of outward symptoms. I was told repeatedly by my OB/GYN that I did *not* have it despite "higher end of normal" bloodwork (and he didn't run all of the tests he should have). I had problems dating back to highschool but they were always brushed off due to being a hard-core long distance runner, so I was put on BCP, which mask the symptoms and create regular cycles.

I realized something was wrong when I wasn't ovulating on my own at all or cycling on my own after I stopped BCP. Then my OB/GYN pointed out that my ovaries were "enlarged" (which is from the many small cysts in PCOS) but he swore up and down that I couldn't possibly have PCOS because I "didn't look like someone w/ PCOS" (which is ridiculous. Half of women w/ PCOS are overweight, the other half are not. Many women don't have much in the way of external symptoms). He recommended I gain weight to up my BMI (which was normal...like around 20 when we were TTC) and thought that would get my ovulating.

I pressed to get into an RE after I got a hold of my bloodwork and saw that several of my androgen levels were "higher end of normal". That plus not ovulating spelled out clearly for me that something *was* wrong. With more extensive testing, my free testosterone, DHEA-S, and a few others came back elevated beyond the normal range. The original OB/GYN just wasn't looking at the big picture and putting the pieces together.

I take Metformin and low carb now for my PCOS, and it allowed me to get pg on my own with DD (a surprise after doing injectables to conceive DS).

I do have some (tmi) chin and lip hair that I have to pluck, etc. but nothing insanely bad or anything (and I have really dark hair anyway...like espresso brown....almost black). I don't have acne, acanthosis nigricans (often looks like a "dirty" ring around the neck), skin tags, etc. that can go along with PCOS. The symptoms are all very mix and match, so with the elevated androgen levels and the infertility/anovulation, that was enough to get a diagnosis.

I don't think that's exactly the info you are looking for though. Are you thinking thyroid issues, or something else??

[niccig]

I can share thyroid issues. Look here to see a list of symptoms http://www.endocrineweb.com/thyroid.html

If you get a thyroid test, ask the Dr. what your TSH level is. You want the exact number, not "it's within normal range" as there's debate over what is normal range. http://thyroid.about.com/cs/newsinfo/l/bltest_values.htm

I was seeing an endocrinologist at Cedars Sinai in Los Angeles. I was told levels were normal, but they were using a wider range. My TSH was 3.6, just above the narrower normal range and I was crazy women who hadn't slept in weeks. But I was told I was fine. In finding a surgeon to remove a thyroid nodule, I discovered my levels were too low and need medication. My new endocrinologist wants my TSH levels between 1.0 - 2.0. If I'm on the high end of that, I start to get symptoms again. I feel better when levels are between 1.0 - 1.5.

My main symptoms of hypothyroidism are insomnia - I can not sleep and once asleep I keep waking up. I normally sleep very soundly and don't hear anything (except DS). I'm also pi$$ed off the entire day for no reason. Normally you know why you're angry, you can say what set you off, when I'm at my worst, I'm angry at everyone and everything and any little issue sets me off. DH calls it my Jekyll and Hyde moods. I also gain weight easily. I put on 8lbs in 2 months after I had thyroid surgery plus 8lbs in the 2 months before the surgery.

Thyroid tests are easy - bloodwork, and even the test for Hashimotos is blood test for an antibody. If you haven't been tested in a while, get a test and ask lots of questions about specific numbers. If you're still feeling that it could be thyroid related, see an endocrinologist that specializes in thyroid issues as there's a lot of subtlety when looking at test results, how the patient feels etc.

HTH

[JTsMom]

I have thyroid issues too. If that is what you are suspecting, make sure they check your T3 and T4 levels as well as your TSH, and ditto everything above.

[niccig]

I have thyroid issues too. If that is what you are suspecting, make sure they check your T3 and T4 levels as well as your TSH, and ditto everything above.

Lori's right. It's the combination of your levels that can tell the Dr. what's going on. If one is high and the other low, it can mean something. I've read that thyroid issues are most incorrectly diagnose and treated. So, if you think it's that, get to a specialist. My dr. is amazing and I wish I had seen him when this first started 3 years ago.

[brittone2]

Dittoing the above as far as thyroid testing. I've always heard it is best to have Free T3, Free T4, TSH and antibodies checked. I had to go through thyroid testing while going through infertility stuff as that's one of the main things they like to check, obviously. My mom is going through a fiasco with this right now. She needs thyroid testing due to some symptoms and they only ever check her TSH.

[MontrealMum]

Yes, more ditto on the thyroid. I've been complaining about classic hypothyroidism symptoms for years now, and had been tested several times by my GP but the results were always within "normal" range. Again, huge diff. between a GP and a specialist, and also between which tests are run and how normal is interpreted. My pregnancy knocked my off the radar with thyroid levels - for which I am completely thankful now - and it was enough for my new doctor to question, and start me on synthroid. I am a new person. I can't tell you how much this changed my life, and DH would echo that as I had all the anger/frustration issues Nicci referred to as well. I've been on meds for nearly 6 mos now and am slowly losing weight (but actually losing, which was nearly impossible before), my skin/hair look better, and I am not freezing all the time. Also, my sleep issues are much better regulated. I am a "normal" person, finally :)

[bubbaray]

I've had hormone level tests done (a number of times) as part of IF treatments. Mine were normal, so don't know much about the tests, other than they are blood draws (and maybe urine -- can't remember) on specific days of your cycle.

I have had hyPERthyroidism in the past, caused by a virus. So NOT fun. It comes back rarely, usually when I'm very stressed). Symptoms are "the trots", shaking hands, general feeling of jitteriness (like I've had 1,000 cups of hightest coffee), sleep disruption (can't sleep at night, want to sleep all day), enlarged thyroid -- oh and drastic unexplained weightloss. Emotionally, I change -- very unbalanced. Its hard to describe, but your thyroid manages your metabolism, so when your thyroid is running too fast, so is your metabolism. Because mine was viral, and I was in university at the time, I had a zillion drs (most in training) examine me b/c its apparently pretty rare. The only treatment I got was some sort of sleeping pill to "re-set" my sleep cycle. Eventually, it got better. Not sure what triggered it, but I had had mono about 6m prior.

Now, even when I feel my thyroid is off, it is pretty much in the normal range by the time I get into the dr and get the requisition for labs.

Good luck!

[lizajane]

I have PCOS and had a heck of a time getting diagnosed because I am not overweight and don't have a lot of outward symptoms. I was told repeatedly by my OB/GYN that I did *not* have it despite "higher end of normal" bloodwork (and he didn't run all of the tests he should have).

does anyone with PCOS NOT have trouble with fertility? i thought that was "the" symptom, but please correct me if i am wrong. your experience does sound like mine except that i (am so blessed!!) did not have any trouble getting pregnant- as in, the first try with both kids.

the story is:
fatigue/low energy/motivated but unable to complete tasks
insomnia/night waking
extreme weight gain due to massive sugar cravings and huge appetite
feeling down
facial hair (SO embarrasing! terrible on my chin. yuck.)
NO interest in intimacy
extreme irritability!!!
lately hot, was COLD during both pregnancies
breakouts on face/chest/back/arms
heavy periods (after very light pre kids)
BAD PMS- very weepy and bloated and easily frustrated

thanks so much for sharing ideas, everyone!

i am not sure how to get a dr. as i called an endocrinologist and they told me i needed a diagnosis from a GP. my GP told me i was crazy and put me on anti depressants and refused to hear me about any possible medical reason for my fatigue (clearly, searching for new dr!)

[firsttimemama]

I have both PCOS and thyroid prob (Hypothyroidism) and BOTH were extremely difficult to get diagnosed. I self-diagnosed looong before the medical community caught up with me.

Thyroid - test for YEARS and years, huge family history, finally RE did a thyroid antibody test - mine were through the roof - every other thyroid test was normal

PCOS - first OB I asked laughed and refused to test me, then the same RE who did the thyroid antibody test diagnosed me as borderline/tentative PCOS after an ultrasound of my ovaries and symptoms acne and facial hair.. all my hormone blood levels were "normal" - took metformin during first 12 weeks of pregnancy #2 (preg 1 was miscarriage) - now have 7 mo old DS. Not currently being treated with drugs for PCOS though. Also, I am not overweight and this is why the first OB laughed & refused to test me

[brittone2]

My advice is mom to mom, not trying to replace the advice of a physician, obviously. Yes, you can absolutely have PCOS without having fertility issues. Many women find they could conceive when they were younger but their PCOS becomes more pronounced w/ age. There are actually quite a few women w/ PCOS that do not have fertility issues, although it often is the big tip off that something is wrong.

Some of the symptoms you describe seem like they could be possibly be thyroid related, and some (sugar cravings, heavy periods, facial hair, acne, etc.) can be hallmarks of PCOS. Any good doc (IMO) will do a *full* panel of androgen levels AND thyroid testing to tease out if it is one or both of those (or neither). Further complicating matters, many women w/ PCOS also have thyroid issues, so IMO, I'd definitely insist upon getting thoroughly checked for both androgens, etc. *AND* thyroid. Some of the tests you definitely want for PCOS are *free* testosterone (not just testosterone; free specifically is more informative in the case of PCOS), estradiol, LH, FSH, DHEA-S, and androstenedione, as well as serum sex hormone binding globulin. And then a good thyroid panel (not just FSH, especially since you are symptomatic). If anything comes up high androgen wise, etc. I'd push for a 2 or 3 hour glucose tolerance test *with* insulin levels (not just a regular GTT). I'd also want my cortisol level checked.

A good resource for looking into PCOS is:
http://soulcysters.net/

Hopefully someone can direct you to some good thyroid related info. To be honest, with your symptoms, I think it would be very hard to tell if it is one, both, or neither without a good solid panel of bloodwork. Definitely insist that someone take you seriously. Both thyroid issues and PCOS have health implications beyond fertility, so it is something you'll want to look into more extensively.

HTH. I've seen an excellent endo (Dr. Brown at Duke) for PCOS and she's very on top of new research, etc. If you are trying to rule in/out PCOS she may be worth calling. She's excellent at diagnosing PCOS. Many docs will brush off women w/ PCOS that don't have every symptom, and that's not diagnostically accurate. Since it is a syndrome, you only need a few to receive a diagnosis. With the symptoms you have, it is certainly worth pursuing a solid panel of bloodwork for PCOS and thyroid.

eta: just read the post before mine. I agree completely. I was not overweight and was brushed off and reassured over and over that I was totally normal despite my "higher end of normal" bloodwork (initially, but more extensive/proper testing did show abnormalities). I did injectables w/ DS (after trying clomid, metformin and the combo of the two). With DD, I went on met at a higher dose (after talking w/ Dr. Brown about this. Many docs still won't RX a higher dose of metformin for a woman that isn't overweight and doesn't test positive for insulin resistance. I bumped up to 2000 mg hoping to cycle on my own. I didn't cycle...because I was pg after 3 months of Metformin. I needed the higher dose despite my tests NOT showing insulin resistance and not being overweight. THe current thinking is that women with PCOS are insulin resistant by their very nature, regardless of what the GTT shows. In my case, I find that to be true. Metformin makes my body work better (in conjunction with a low carb diet for health even though I don't need to lose weight).

[MelissaTC]

Good luck, Liza. I have PCOS too but definitely have outward signs. And I see Dr. Brown at Duke as well. Warning- she can be a bit flakey!

[dhano923]

I have PCOS, just diagnosed about 6 months ago. I didn't have trouble with fertility, but I did have issues with major weight gain (mostly in the waist area, which is a sign), irritability and tiredness, facial hair, and dark areas on my neck and underarms. My OB actually suggested I get tested for insulin issues. I ended up switching my PCP a few months ago and she also happens to be an endocrinologist and I told her what the OB said so she requested both sugar and thyroid tests. My fasting sugars are high too so I am insulin resistant so she started me on Metformin. I've been on it for 6 months but we are still trying to figure out the right dosage. She said once we do, it will be much easier for me to lose weight, the facial hair and discolorations will go away and I'll feel better overall. Last month she also started me on a medicine that decreases hair growth (forgot the name) but she said it will take 2-3 months to see noticable results.

I've cut back on my sugar intake but am having a hard time reducing my carb intake -- I love bread, rice and pasta so I am just trying to eat less of them each time.

[niccig]

Of your symptoms, these are the ones I can relate to with my thyroid:




d
fatigue/low energy/motivated but unable to complete tasks
insomnia/night waking
extreme weight gain due to massive sugar cravings and huge appetite
feeling down
extreme irritability!!!
COLD
heavy periods (after very light pre kids)


Can you self refer to a new doctor? I have a PPO health plan and I searched to find a thyroid specialist for my surgery and he recommended an endocrinologist. Both of them are on lists like this:

http://www.thyroid.org/patients/specialists.php

I also just found out that my pharmacy has been giving me generic thyroid medications as my Dr. did not write "Do Not Substitute". He didn't tick the generic box though, but my insurance insists on generic if it exists. And I've been having issues with my levels these last few months, and I think this could be why...some people don't take generic thyroid meds as well as brand name and he did mention at the first visit that he insists on brand name. I'll have to call him on Monday to get a new prescription and that means more blood tests in a month yada yada yada ugh.

Liza, I hope you can figure out what is going on. Keep trying new doctors until you get an answer. Don't let them brush you off with "you're fine" line, insist on having tests until you get an answer.

[lizajane]

I have PCOS, just diagnosed about 6 months ago. I didn't have trouble with fertility, but I did have issues with major weight gain (mostly in the waist area, which is a sign), irritability and tiredness, facial hair, and dark areas on my neck and underarms. My OB actually suggested I get tested for insulin issues. I ended up switching my PCP a few months ago and she also happens to be an endocrinologist and I told her what the OB said so she requested both sugar and thyroid tests. My fasting sugars are high too so I am insulin resistant so she started me on Metformin. I've been on it for 6 months but we are still trying to figure out the right dosage. She said once we do, it will be much easier for me to lose weight, the facial hair and discolorations will go away and I'll feel better overall. Last month she also started me on a medicine that decreases hair growth (forgot the name) but she said it will take 2-3 months to see noticable results.

I've cut back on my sugar intake but am having a hard time reducing my carb intake -- I love bread, rice and pasta so I am just trying to eat less of them each time.

i have been blaming the weight gain on stress/anxiety and lexapro (switched off of it) but since it exists, and it is definitely a spare tire, i think i should list it as a symptom. i gained nearly 30lbs in 6 months. i had just lost 15 and then got very stressed and just ate and ate and ate. all i EVER wanted to eat was sugar, sugary carbs, and also... sugar. donuts, ice cream, pasta, candy...

so now i am all fascinated to look for dark spots. i have some sun damage on my chest and i have MAJOR moles. but i think the skin tags are more concerning. someone in my family (who shall remain nameless!) has them ALL OVER and said i would probably end up with them for some sort of hereditary reason... um, no thanks.

and if i could get this hair to go away i would be SO FREAKIN' HAPPY. i was trying to figure out what i could sell to pay for laser removal... lol...

oh, and irritability WOW. i think if you look it up in webster's, there is a photo of me...

[MelissaTC]

Definitely get a full panel done. I was always super thin until I hit around 20 or so. I literally jumped from a 6/8 to a 10/12 in about 6 weeks. Everything went wacky from there.

[MontrealMum]

Definitely get a full panel done. I was always super thin until I hit around 20 or so. I literally jumped from a 6/8 to a 10/12 in about 6 weeks. Everything went wacky from there.

Yes, this was me too. You'd think that might have tipped someone off, but nothing was ever caught until I found myself assigned to this wonderful new doctor this past year. Get all the tests suggested here, and advocate for yourself. It's not right to feel the way you do, and you shouldn't be made to put up with it.

[dhano923]

The skin discoloration isn't really spots, per se. It's areas that are dark. Generally, it's the neck area (so it looks like a dirty neck), knees, back of knees, underarms and groin area. The skin is rougher sometimes and is darker than your normal skin tone. Once you get the insulin levels right, the discoloration goes away.

[lizajane]

The skin discoloration isn't really spots, per se. It's areas that are dark. Generally, it's the neck area (so it looks like a dirty neck), knees, back of knees, underarms and groin area. The skin is rougher sometimes and is darker than your normal skin tone. Once you get the insulin levels right, the discoloration goes away.

thanks for the perfect descripton! i didn't get it before. i don't think i have any... but i am pretty tan, so it would be harder to tell maybe?

[brittone2]

thanks for the perfect descripton! i didn't get it before. i don't think i have any... but i am pretty tan, so it would be harder to tell maybe?

and just to clarify, you don't *have* to have acanthosis nigricans (the darkening) in order to have PCOS. It is just one of many symptoms that are essentially "mix and match" for lack of a better way of putting it. I don't have AN at all, and technically don't test as insulin resistant, but I also responded to Metformin by getting preggo with DD (Met is an insulin sensitizer. If you get your insulin levels under control w/ meds/low carb diet, the other hormones normalize a bit for most women with PCOS).

[Wife_and_mommy]

Wanted to thank Liza for starting this thread and everyone for all the info. The more I've read your descriptions, the more I think I may have either a thyroid issue or PCOS.


I haven't been for a physical since pg with DS but most of my symptoms are much more pronounced since his birth.

Thank you, ladies, for sharing of yourselves.

[lizajane]

and just to clarify, you don't *have* to have acanthosis nigricans (the darkening) in order to have PCOS. It is just one of many symptoms that are essentially "mix and match" for lack of a better way of putting it. I don't have AN at all, and technically don't test as insulin resistant, but I also responded to Metformin by getting preggo with DD (Met is an insulin sensitizer. If you get your insulin levels under control w/ meds/low carb diet, the other hormones normalize a bit for most women with PCOS).

so this while insulin thing... could that be why i PASS OUT if eat something like pancakes with syrup? or a donut? or a white bagel without cream cheese? i think i have hypoglycemia-like symptoms.

[brittone2]

so this while insulin thing... could that be why i PASS OUT if eat something like pancakes with syrup? or a donut? or a white bagel without cream cheese? i think i have hypoglycemia-like symptoms.

nak-
sorry, just seeing this post now...

Yes, it could be related. Here's a link:

http://www.pcosupport.org/living/nutrition/insulinre.php

You can also look into "reactive hypoglycemia".

PM me if you want more info.

[lizajane]

nak-
sorry, just seeing this post now...

Yes, it could be related. Here's a link:

http://www.pcosupport.org/living/nutrition/insulinre.php

You can also look into "reactive hypoglycemia".

PM me if you want more info.

THANK YOU for all the help. i called dr brown today, but can't see her without a PCOS diagnosis as she only treats patients with PCOS. so i tried to just get into the practice, but the first opening is JANUARY!! ack! i am going to see if i can go through a GP who is friends with DH and maybe get into raleigh endocrinology.

[brittone2]

THANK YOU for all the help. i called dr brown today, but can't see her without a PCOS diagnosis as she only treats patients with PCOS. so i tried to just get into the practice, but the first opening is JANUARY!! ack! i am going to see if i can go through a GP who is friends with DH and maybe get into raleigh endocrinology.

Ack. I couldn't remember how they worked it.

I hope that you can find some answers to what you are dealing with very soon. Don't allow anyone to brush off your concerns.

[MamaMolly]

Ladies,
I just started to read this thread and thought check, check, check...I have SO much to discuss with my RE on Monday. Thank you, each and every one for sharing your experiences. I really want to get my moods under control, so I'm hoping for some answers following some testing.

THANK YOU!!

[brittone2]

nak-
sorry, just seeing this post now...

Yes, it could be related. Here's a link:

http://www.pcosupport.org/living/nutrition/insulinre.php

You can also look into "reactive hypoglycemia".

PM me if you want more info.

eta: I should clarify. If you put out too much insulin due to IR, it is functional hypoglycemia. You might want to look into reactive hypoglycemia as well.