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Polycystic Ovary Syndrome (PCOS) Message Board
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Old 05-13-2012, 07:14 PM   #1
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Exclamation PCOS then... NOT PCOS... :( confused and depressed

hi there!

I had some tests done when i was 18 scans an blood tests and the bloods came back normal but the scans said I DID HAVE PCOS but there was nothing abnormal other than that the rest of me was healthy in that department. then at 20-21 i had the tests done again. but they said that I DIDDNT HAVE PCOS. im now 23 and recently had blood tests to check my hormone levels.my doctor said that all of the women hormones where fine but i have high testosterone levels ( i have no hair growth or anything just i seem to be really strong (in muscle i mean) and iv got broad shoulders and weight on me that im trying to lose with difficulty) im lucky if i have a period once every6 month my last period started 17th of September 2011. my boyfriend and i have been wanting to start a family for over 5 years and still nothing. i went to the doctors and he diddnt ask me he just looked and said do u want some "pick me ups" i said no....so people are starting to see that im getting low with everything. i dont no anyone else who is having any problems they just have to look at there boyfriend etc and there pregnant. i feel like im the only woman in the world going threw this and im heartbroken and so is my boyfriend. I feel like a total let down to my family and the man who has stood by me threw so much. i cannot continue feeling this way anymore i need some answers please... :'(

i guess what im wanting to no is is there any hope for us? and if so what ? and how long is the treatment if any? is it serious? am i infertile?

thank you for any answers or information

Jay xoxoxo

 
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Old 05-15-2012, 07:45 AM   #2
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Re: PCOS then...NOT PCOS... :( confused and depressed

its gota be bad if no one is saying anything ...

 
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Old 05-15-2012, 04:08 PM   #3
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Re: PCOS then...NOT PCOS... :( confused and depressed

Quote:
Originally Posted by ladyjadey View Post
its gota be bad if no one is saying anything ...
Hi Jay,
I'm sorry I haven't responded to your question. I don't usually look in the PCOS section- I usually answer in the infertility and thyroid disease boards, which you should consider checking out because they may both be helpful to you.
The first thing you should do, if you don't mind, if post the blood work you've had done, with results and ranges. I will be able to advise you on which tests look suspect and which ones you should still have done (I am not a doctor but I have read a lot of infertility books through the years).
Just because your testosterone levels are high, doesn't mean you will be hirsute (hairy) or have acne. People of certain cultural backgrounds will have more or less sensitivity to high levels of testosterone. Mediterranean and middle Eastern women are more testosterone sensitive, which is why they tend to be hairier. Women of Asian decent are usually less testosterone sensitive, which is why they tend to be less hairy.
It's more important to know how much FREE testosterone there is in your blood, as that is the testosterone that can have an impact on your body. To find out free testosterone, you have to calculate the Free Androgen Index (FAI) by taking total testosterone and dividing it by SHBG. If your SHBG is high, your free testosterone levels will be low, which could explain why you are not hirsute.
Some tests that come to mind that you should have done after you induce a period (which you should do, it's not healthy to go 9 months without a period). Consider perhaps using a progesterone cream like Emerita for two weeks and then stopping (consult your doctor first). I'm not sure if it will be enough to bring on a period, so you may have to take a doctor prescribed progesterone.
On the third day of your period, you should have your LH, FSH and Estradiol (E2) level checked. The ratio of LH to FSH can be a clue about PCOS. There are also tests you can have taken any time.
TSH
Free T4
Free T3
Prolactin
Testosterone
Sex Hormone Binding Globulin (SHBG, this one is important)
DHEAS
Fasting Insulin
Fasting glucose
Glucose and insulin tolerance test (to test for insulin resistance)
hba1c
17-OH Progesterone
Beta 2 glycoprotein

I would not be surprised if you were insulin resistant and hypothyroid. Often, these go hand in hand with anovulation and PCOS.

Often, taking clomid will make you ovulate and help you get pregnant but you should first try to address the reason you are not ovulating. Sometimes, being deficient in thyroid hormones can prevent you from ovulating or cause you to ovulate really late. Or, like in my case, cause you to have early miscarriages even though I ovulate.

Please get back to me when you have that info. If you don't have it, you should ask your doctor to give you a copy of all your bloodwork. Before taking clomid (if it comes to that) you should have a hysterosalpinpogram to make sure your tubes are clear. And your boyfriend should have a semen analysis. It's best to get all your ducks in a row.

 
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Old 05-15-2012, 05:11 PM   #4
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Re: PCOS then...NOT PCOS... :( confused and depressed

The bloods they did was a full blood count of everything. He said he only 1 that was high was testostarone. He checked thyroid etc an said it was all fine. Il try and get a copy from my doctor. Bt mite take a little while.

What i really want to no is if its just my testostarone levels Wil i stil be able to become pregnant? Or is there no hope? Thank you for replying im way more grateful than i cn express xoxo

 
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Old 05-15-2012, 06:20 PM   #5
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Re: PCOS then...NOT PCOS... :( confused and depressed

Jay- it depends on how high the testosterone level is but even then, if SHBG is high your testosterone might not even be an issue.
The problem with high testosterone is that is thought that it could affect egg quality. I don't think that high testosterone is causing infertility but that it could be a result of what it causing the infertility. Sometimes, as I mentioned in another thread, clomid can be combined with dexamethasone to lower testosterone and achieve pregnancy.
I have to warn you also that many doctors will tell you that your thyroid levels are in range but MANY people with hypothyroidism (myself included) are at the far end of the ranges but still "within range."
Most healthy people have a TSH of around 1 and yet the lab range often goes up to 5.5. Also, people with healthy thyroids tend to have free thyroid hormones (FT3 and FT4) in the upper third of the lab range. So, please make sure you get the lab work so that you can interpret them for yourself (with a little help, of course ;-)
Don't worry, it'll happen. Your ovaries might need a little push but your are young and have lots of healthy eggs in there, it's just a matter of coaxing them out!

 
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Old 05-15-2012, 07:48 PM   #6
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Re: PCOS then...NOT PCOS... :( confused and depressed

I can ovulate on my own as i said in the original post i started my last period on September 17th. And 2 weeks be for i did ovulate. I did an ovulatin test and it showed we had just missed it by a couple of days :'( bt we stil had intercourse just in case...... Bt i had my period and we diddnt "do it" in time. the lines went lighter and lighter over a week to where they wasent there at all from 2 gery dark lines.to just 1 line .... What test would i need to find out kinda like an egg count i cnt fink of another way of putting it.

Last edited by ladyjadey; 05-15-2012 at 07:51 PM. Reason: jumbled sentences...using my phone is why lol

 
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Old 05-16-2012, 04:23 AM   #7
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Re: PCOS then...NOT PCOS... :( confused and depressed

I think what you are looking for is to find out your ovarian reserve (how many eggs you have left), which I'm sure will be great, by the way. At 23 that is almost never a problem.

There are 3 tests you could have done.

The first is an ultrasound, in which they will count your antral follicles- Atral Follicle Count (AFC). Can appear falsely high in PCOS because the antral follicles can be confused with the little cysts.

Anti-Mullerian Hormone (AMH)- this is a hormone produced by all the immature cells in your ovaries- sort of gives them an idea about your reserve.

Follicle Stimulating Hormone (FSH)- Day 3- You want a number below 10 here. 3-5 is excellent, 6-9 is good and 10-13 is fair. You will probably be less than 5. My FSH was 5 when I was 29. This number is telling you how hard your brain is working to stimulate your ovaries to produce eggs. A low FSH means that you probably have lots of good eggs and your pituitary (gland in your brain) is not having to produce much hormone to get your ovaries to mature and release eggs. This number is similar to TSH in that high is bad. Both TSH and FSH are pituitary hormones.

Honestly, I don't think egg reserve is going to be a problem for you. I think what you are going to find is that your FSH is artificially low and not high enough to stimulate your ovaries. This can often happen in PCOS (though we don't know if you have it, it can be very hard to diagnose).

I didn't mean to imply that you are not ovulating. You just aren't ovulating at around cycle day 14, which is what you want for a healthy pregnancy. Statistics show that ovulating after day 20 is more likely to result in a miscarriage due to chromosomal causes. Meaning, if the egg gets too old, there is more likely to be something wrong with it.

I think your next step is to be checked for insulin resistance, which you may have. Work on your diet- high protein, low carb- something like South Beach or Paleo. I got pregnant after 6 weeks of south Beach, even though they could not find a cause for my infertility.

At the same time as you are modifying your diet, you could take Metformin, which helps many people overcome insulin resistance and lose weight (and has the added benefit of helping many women ovulate on time again).

You could also try vitex, if you haven't already. It takes at least 3 months to start working. I just started taking it last month.

If that doesn't work, your next step would be clomid, which is a fertility drug. I'm not sure how it works with NHS- I am assuming you are in the UK? That would be something to address with your doctor but I think checking you for insulin resistance and a re-check for thyroid is the first step.

Hope I have answered some of your questions.

 
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Old 05-16-2012, 03:04 PM   #8
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Re: PCOS then... NOT PCOS... :( confused and depressed

Iv ast my doctor to print the out and i cn pick them up tomorrow so I wil ether pm u with then or post then no here again thank you so much for helping us are you and your husband TTC? xoxoxo

Last edited by ladyjadey; 05-16-2012 at 03:07 PM.

 
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Old 05-16-2012, 06:00 PM   #9
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Re: PCOS then... NOT PCOS... :( confused and depressed

You are very welcome, Dear!
Yes, please let me know the results when you get them, and if you don't mind, can you post the ranges and the units as well, so that I have an idea where they fall.
Yes, we are TTC again. We have a 2 year old son that I conceived with Gonal F injections and IUI. It wasn't so bad but I am hoping to find the root of the cause this time and avoid the fertility medication. We'll see. If the thyroid meds look like they are working, we will try naturally for a while. But I am 32, so I can't wait too long before moving on to medical "intervention." You have the luxury of trying various natural methods before using fertility drugs.

 
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Old 05-17-2012, 02:48 AM   #10
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Re: PCOS then... NOT PCOS... :( confused and depressed

Here i go....and iv nt got a clue what u need....

Gonadotrophine level (xe25h) ...normal of peak LH and FSH
serum LH level 10.2iu/L
Serum follicle stimulating hormne level 4,6 iu/L
Serum testosterone level 3.1 nmol/L (<=1.8) change in adult female testosterone (M/S assy) referance range oct 2010
Plasma testosterone level . Referred for confirmatory analysis result to follow

Iv got a few.more.but.there.liver tests.etc im guessing that these are.my.hormone tests lol

Xxoo p.s. good.luck in trying let me no how.it.goes.could.defo do with some.good news!!

Last edited by ladyjadey; 05-17-2012 at 02:58 AM.

 
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Old 05-17-2012, 04:39 AM   #11
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Re: PCOS then... NOT PCOS... :( confused and depressed

Hi Jay,

Well, I would say that, based on the fact that your LH is almost twice your FSH and your testosterone levels are high, you probably DO have PCOS. FSH and LH should be about the same on day 3, if LH is much higher than FSH, that is one indicator of PCOS. However, they must be drawn at the beginning of your cycle, like day 2 or 3. I'm not sure what the ratios would be after that.

Can you post the other results too? even the liver function tests. hopefully they checked your glucose and insulin because I suspect they may be high.

 
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Old 05-17-2012, 05:14 AM   #12
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Re: PCOS then... NOT PCOS... :( confused and depressed

Liver function test (x77wp)
ALT/SGPT serum level 52.0 iu/L (<= 56.0)
Serum alaumin levei 44.0 g/l. 35-50
Serum alkalin phosphatase lvl 53.0 iu/L 25-120
Serum bilirubin lvlt 6.0 umol/L (<=22.0)

 
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Old 05-17-2012, 05:24 AM   #13
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Re: PCOS then... NOT PCOS... :( confused and depressed

Liver function test (x77wp)
ALT/SGPT serum level 52.0 iu/L (<= 56.0)
Serum alaumin levei 44.0 g/l. 35-50
Serum alkalin phosphatase lvl 53.0 iu/L 25-120
Serum bilirubin lvlt 6.0 umol/L (<=22.0)

Urea and electrolyter
Serum sodium lvl 141.0 mmol/L 136-145
Serum potassium lvl 4.2 mmol 3.5-5.1
Serum urea lvl 5.5 mmol/L
Serum creatinine lvl 92.0umol /L
GFR calculated abbreviated MDRD 78.0ML/MIN
Serum TSH LVL 3.5 MIU/L (0.2-4)
Serum C reactive proteine lvl < 5.0miu/L (<= 9.0)

 
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Old 05-17-2012, 10:38 AM   #14
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Re: PCOS then... NOT PCOS... :( confused and depressed

Hi Jay- Well, the good news.. or the bad news, depending on how you look at it, is that your high TSH level indicates that you are probably hypothyroid. TSH levels in healthy people are typically between 0.5 and 1.5, with average being around 1. Yours is 3.5. PCOS and hypothyroidism often go hand in hand. It is thought that hypothyroidism causes PCOS. What you need to do next is have your Free T4 and Free T3 tested, in conjunction with TSH and TGB and TPO antibodies (would tell you if you have autoimmune hypothyroidism, called Hashimoto's thyroiditis.)
Most often, the symptoms of hypothyroidism will be long cycles, sometimes with absent ovulation, heavy periods, low progesterone levels, stubborn weight gain, hyperinsulinemia (high insulin levels), fatigue, brain fog, sore joints/ stiffness, depression. You can have one or all of these symptoms and there are many more. I have no doubt that you are hypothyroid but it would be good to get your Free T4 and Free T3 levels checked out too because they will be more definitive. They don't need to be below range to indicate hypothyroidism, just below the 50th percentile. Sometimes, in early hypothyroidism, the TSH will be slightly elevated (above 2) and the Free T3/T4 levels can still be normal. However, since you are having trouble conceiving, my guess would be that your thyroid hormone levels (FT3/FT4) are low as well. The good news is that taking thyroid hormone will help you lose weight and straighten out your cycles. You may also have high cholesterol and high blood glucose & insulin levels due to hypothyroidism but these should straighten out once you are optimally dose of thyroid medication.

 
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Old 05-17-2012, 10:47 AM   #15
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Re: PCOS then... NOT PCOS... :( confused and depressed

And, by the way, when I was diagnosed with hypothyroidism, my highest TSH was 2.88. The last time I had it checked was 3 weeks ago and it was 3.3, still lower than yours. It is not uncommon to become slightly more hypothyroid when first starting medication as you adjust and increase your dose. You are looking for your TSH to be around 1 (or lower, if taking desiccated thyroid- natural pig hormone) and your FT3 and FT4 to be in the top third of the lab range.
You may have difficulty getting a doctor who is not knowledgeable about thyroid disease to take you seriously because your TSH is still "within lab range." It may require going to a private doctor. Let me know what part of the UK you are in and I will send you a list of top doctors for thyroid disease in your area. If it helps you in convincing your doctor, the new range recommended by the American Association of Clinical Endocrinologists (AACE) for TSH is 0.3-3 and the National Academy of Clinical Biochemistry recommends a TSH range of 0.4-2.5. However, it is understood by many knowledgeable doctors that TSH should be below 2.

 
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