How to get a diagnosis...with most symptoms, but thin?

faithlight · 06-13-2008, 07:21 PM

How does a person go about convincing doctors that there really is something wrong? I have had problems with my periods right from...before they started, because they were too late starting (almost 17). And then they were never regular. And within a few months after getting them, I'd feel weird if I went without food for more than two hours, so I assumed something was wrong with my blood sugar. It got worse and worse and I'd get anxiety, mood swings and feel about to faint between meals. I'd look up blood sugar/hormones/periods on the internet and I'd always find PCOS, but I didn't have excess hair growth or hair loss or obesity so I thought I couldn't have it.

But now? My hairline has receded, I have acne all down my cheekbones and jaw, I have pretty thick "peach fuzz" all over my face and I shave off a moustache above my upper lip every few weeks. And my periods come every 5-6 weeks. But I'm still thin.

So what's the borderline between "normal" and "abnormal"? I completely dismissed PCOS a few years ago because I couldn't see any signs I had it; now I can see lots of signs. How bad does it have to get before doctors accept there's something wrong, too--especially since I don't have the weight problems that seem so common in people with PCOS?

I have had an ultrasound ("normal") and blood tests, and I hear "everything's normal" but then when I insist there's something wrong: "Well, your testosterone and thyroid were borderline..." Since my symptoms are definitely worsening from year to year, do I have to wait for a diagnosis until my hormone levels really are abnormal? Can you be diagnosed with PCOS without abnormal hormone results or cystic ovaries, just on the basis of irregular menstruation and abnormal hair growth/loss? And is it possible that my doctor's "ranges" are way too broad and "borderline" is really too high for me? I wish I could say all this was just in my head but really, I know it's not.

jennifermcc · 06-14-2008, 02:59 AM

What kind of dr are you seeing? GP or OB? You should probably go to an endocronologist. If you are TTC or considering it then you might want to consider going to a reproductive endo. But if you don't have cysts and you are getting AF that is a good sign (at least if you are TTC). I don't really have many hormonal levels that point to PCOS but one that is off is my LH:FSH ratio. It should be 1:1. But mine is always like 5:1. This is an indicator of PCOS but you have to go to someone who is knowledgeable about this. If you have blood work results with these levels you can check for yourself just compare the LH and FSH results they should be 1:1.

HTH

-Jennifer

Tummy · 06-14-2008, 02:02 PM

I agree that you should see an endocrinologist. Sometimes lab work comes back "normal," but it's just b/c the lab shows it's in normal range, but the dr doesn't know how to interpret how they relate to each other. The big example is LH:FSH ratio. Both could be normal in the lab, but the way they compare to each other could be abnormal. Also on ultrasound, did they do trans-abdominal or trans-vaginal? My TA u/s was normal, but on TV they saw tons of little cysts in my ovaries.

I don't really believe in "borderline" thyroid results. Many labs still go by the "old" normal range, with a TSH of less than 5 being normal. But the newer guidelines (which an endo should know) use 3 as a cutoff, so if your TSH is 4, they may say you're normal, but you're really hypothyroid, which can only complicate matters if you're not treated. I start having hypothyroid symptoms when my TSH goes up to 3.5.

I think you need to see an expert in this for sure. Your issues sound pretty convincing and someone who really knows how to diagnose PCOS should see you and analyze your labs.

Eva37 · 06-15-2008, 07:39 AM

welcome to sc

id agree too, that an endo is the best person to see

my blood tests show 'normal' but i a definately a pcos girl.

could you see a different dr instead?? that's what i had to do to get some pcos help
eva

KatCarney · 06-15-2008, 08:36 AM

It's possible that it's not PCOS. PCOS symptoms are similar to those of other disorders, and a good doctor should test for and rule out those other things before settling on a pcos diagnosis (there no way to actually 'test for pcos')

The best thing is to keep a journal with your menstrual history and other symtoms so a doctor can see 'what's what'.

Also, the 'peach fuzz' isn't typically considered a symptoms of pcos. Hisutism is when the hair turns darker and more coarse.

My suggestion would be to find a doctor who at listens to you and is invested in finding out what's behind your symptoms - whatever it is.

faithlight · 06-15-2008, 02:12 PM

Thanks to people who responded. My doctor, who's just a family doctor, said all my hormones were perfectly normal. Then she sent me to an ob-gyn who said my TSH was 3.8 which was almost too high, apparently. And I was starting to get really, really exhausted for no apparent reason, which I guess can be a symptom of low thyroid. Both doctors didn't seem to care that my periods were irregular--every two weeks, then every five. I mean, they were sympathetic, but they just wanted to put me on BC pills.

As for the "peach fuzz", it's not just peach fuzz. The hair above my upper lip is coarser and darker (not like a man's though) and can get a couple centimetres long. And I've just noticed a few of my chin hairs are doing the same thing--darkening and lengthening. Is that normal? I don't know. Is it considered normal to have lots of long, dark coarse hairs all the way up the insides of my thighs? Because I've just noticed that this summer, too--I shaved them off but they are coming right back.

I know I don't have all the signs of severe PCOS (not the obesity, mainly), and I'm not TTC, but I do want to have children some day and if I do have PCOS I don't want my symptoms to get to the point where they're really hard to reverse.

Tummy · 06-15-2008, 04:34 PM

Yep, sounds like real hirsutism to me. Especially the thigh hair -- some women don't even know they have it until they're in stirrups for a pap and the ob/gyn notices the hair along the inner thighs.

Don't let the thin part discourage you from seeking a diagnosis. There are many of us (isn't it something like 40%?) who are thin. A doctor who is knowledgable in PCOS would know this. And if it's not PCOS, it is clearly SOME endocrinologic disorder and needs to be addressed.

Unfortunately there is no cure, but symptoms and menstrual irregularities can sometimes be helped with a low glucose-index diet and some medications (metformin, for example).

And by the way, I have very few outward signs of PCOS -- I'm thin, no hirsutism/acne/hairloss, but my LH:FSH ratio is off, my ovaries are full of small cysts, and I don't ovulate or get periods on my own at all. A lot of us don't fully fit the "PCOS profile."

elizabeth229 · 06-15-2008, 11:23 PM

wow your story sounds EXACTLY like mine! i was basically told i was fine by several of the country's "best" doctors and endocrinologists. i too started to believe it was all in my head (i even started constantly asking my mom to look at the fuzz on my chin because i thought i was imagining it).

what finally worked for me was finding a young doctor, fresh out of med school, who was not terribly busy. he spent an hour with me on my first visit! all the other doctors were so busy they didnt seem to care to look into my case. they were too busy with their overtly sick patients.

some other things:

have you tried a low carbohydrate diet? even if you can't get a diagnosis, it might be an easy way to feel better without a doctors help.

also, dont be afraid to tell a doctor that you've researched online and know your stats are out of range by newer standards. my tsh was 4.9 and my lh/fsh was 5/1 but all of the old conservative doctors said that was "fine."

and most importantly, dont give up! it took me 1 whole year and countless doctors to find someone who believed me

sarah2747 · 06-25-2008, 10:06 PM

Reminds me of my current battle! I had blood tests done a month ago and never got a call (indicating normal results). So I called to confirm my suspicions and ask for a copy of the results - which I finally got today. There it is - clear as day - LH to FHS 3:1, LH of 24.3 (only normal during ovulation or post-menoposal - neither of which apply to me - check my chart!!). I can only imagine how many times people go undiagnosed for various things and so few of them would actually hunt down their results.

I've only seen a GP but I have an appointment with a gyn in August. I will fax the results to the gyn tomorrow.

Natalie'smom06 · 06-28-2008, 09:12 PM

I won't reiterate what everyone else said, But I wanted to agree with seeing an Endocrinologist, that is who diagnosed me. You may want to inquire if they are well informed about PCOS. I've been lucky that every Dr I have ever seen knows about PCOS. And it extremely helps to go in informed. I am currently only using my OB GYN, she is young like another said, and when I have questions she sometimes doesn't know the answer but will look into it for me. My Endo didn't think thin cysters needed Metformin, but all the research I found said different, so I went to my OB GYN with my research and she gave it to me straight away.
When I was going to make an appt with a Reproductive Endo, I asked right on the phone does the Dr know PCOS, and they told me straight away oh yeah we have many patients with PCOS and we know how to treat it.
I am pretty sure I have seen women on here diagnosed with PCOS with a lot less symptoms than you! Just be blunt and honest right away to the Dr and you'll know if they're willing to really help you or not.

faithlight · 06-29-2008, 01:22 AM

Thanks again for the responses. I have a doctor's appointment again in a couple of weeks. This is just a family doctor, I've seen her before, she referred me to an ob-gyn last fall, I went to see that doctor and after running blood tests and ultrasounds she said everything was normal. I said, "But I had one period ten days after the last and another one fifteen days later, how is that normal? She agreed it would be frustrating, so told me I should go on the pill. I should add that I was on the pill for six months last year. I felt better ON it but once I was off it, I think my symptoms got quite a bit worse, feeling unwell and the outward symptoms like hair growth. I don't think the pill fixes anything so I don't really want to go back on it.

Anyway, maybe since the symptoms have gotten worse since last fall, something in my hormones will actually show up as abnormal this time. Otherwise, I'm going to ask my doctor to refer me to an endocrinologist. My symptoms fit PCOS better than anything else but if it's something else, an endocrinologist should know, I guess.

And I want to see my blood test results this time and compare them with the ranges shown on this site.