How Were You Diagnosed?

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I'm so CONFUSED!!!

In 2003 my GP gave me a blood test because my thyroid was enlarged. He determined that I was fine. However in 2009 my OB/GYN tested me again and sent me to get an ultra sound of my thyroid because it had gotten larger. However, because of lack of insurance and other issues, I never followed through by visiting the specialist.

In 2011, I gained 25lbs in two months (wasn't eating or exercising any differently) and I became very fatigued. I went to a different GP and was tested for thyroid problems and was placed on 25mcg of hormone replacement.

Well, trying to find information about thyroid disorders was confusing to me, so I didn't continue with the meds.

I went to my OB/GYN in May 2012 and she told me that thyroid could cause infertility, so she referred me to a specialist especially since Aunt Flo had been missing for a few months (and I'm not pregnant).

I went to see the specialist today and he's saying that my thyroid is not really enlarged and it seems that my symptoms may NOT be related to my thyroid. So, now I'm exploring the possibility that maybe it's PCOS since some the symptoms are the same.

I have not talked to my OB/GYN, but I'm wondering if I need to see an endocrinologist???

How is this diagnosed? Has anyone experience this???

Btw, I started growing facial hair after a pregnancy in 2004, it has gotten WORSE over the years....So all of these symptoms are confusing....
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Replies

  • miss_sassyteacher
    miss_sassyteacher Posts: 11 Member
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    Hi there, I am not an "expert", but I will share my experience. When I was 14 years old I had a dermoid cyst removed, from then on I had even more problems with my period. Almost every other year I was experiencing cyst and trying different BC . The Obgyn didn't ever tell me or my parents that I had PCOS. My family doctor made the diagnoses and I still did not really know what was going on. A few years later in college I was checked out by a clinic doctor and she tested my thyroid. What she had told me was under-active thyroid and PCOS tend to go together. Every year the doctor increases my medication by 25 mcg. I moved to a new area and had been looking for a new OBGYN. Been here for a year and still have not found one. I think I am paranoid because I do not want to find one that does not know how to deal with PCOS. I am seeing a family doctor and she said my thyroid levels are fine but still increased my medication bc I have gained a lot of weight since my last increase. I've also been put back on metformin but I do not remember it making me so hungry all the time.
  • moesaid2
    moesaid2 Posts: 67
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    Thanks for the info....this is really making me sad. There is so much confusing information and the doctors don't seem to be a lot of help!
  • miss_sassyteacher
    miss_sassyteacher Posts: 11 Member
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    I know that is why it has taken me forever to find a new obgyn. I do not even go and read websites anymore. I signed up for this and have been reading post from others. PCOS has taken over my life I used to be fun and outgoing. There are times I get anxiety and freak out. I just want to get my weight and this under control. We know our bodies better than anyone. So hopefully this new doctor knows whats up.
  • Chainie
    Chainie Posts: 82 Member
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    Your thyroid is part of your metabolic and hormone system. Hormones and metabolism are soooo interlinked. Your body's metabolism USES hormones to regulate, trigger and carry out metabolic functions. This is why pcos messes with your blood glucose conversion systems and impedes your ability to lose weight. I suspect you have PCOS from your symptoms but even it is wasn't, it is definitely A hormone imbalance so this forum can still help you. I will send you some information about the symptoms, how test for them, an explanation of the hormone-insulin-cortisol cycle nd how to overcome it. Don't worry, once you control PCOS and it's best friends Insulin Resistance and Cortisol overproduction, we can diet with the best of them. :-)
  • Chainie
    Chainie Posts: 82 Member
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    Sorry I forgot to mention that adrenal gland dysfunction (usually from the fatigue of cortisol over production) has been noted to mimic thyroid abnormality. When this is the case, it can cause a 'there it is... Oh no it's not' thyroid reading. Adrenal fatigue... Yours free when you order the PCOS/IR package! Hahaha. ;-)
  • lexif14
    lexif14 Posts: 23
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    I was diagnosied with PCOS when I was 16, I didn't have a period for over 10 months, twelve pregancy tests and an ultrasound confirmed I wasn't pregant although it was charming that that was all the doctors assumed. I was finally refered to a specialist who confirmed from the ultrasound that I had PCOS. Everythign else I have found out about it was through my own research as the specialist and doctors didn't really elaborate they just said you have PCOS go to it and good luck.

    For me a low GI diet is best so no starchy foods and nothing with more then 10grams of sugar per serve its the little things that help with your diet I'm managed to keep the weight down and maintain mostly occassionally I'll balloon out when I get really slack but I put in a lot of work to lose it again. Thankfully I am not overally hairy or suffer to many problems my weight is a constant but now my partner has looked into it and like the champ he he is willing to go no wheat no dairy no sugar with me to help. My biggest issue is the lack of periods and there fore ovulation no big deal at the moment but in a few years it will be get your self an amazing gyno and it will help immensly. Hope some of this helps
  • tas3980
    tas3980 Posts: 93 Member
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    I had really bad flow when I was a teenager and debilitating pain where I couldn't move some of my limbs, along with really bad migraines... I had cysts burnt off my ovaries when I was around 18 but the flow was still excruciating... the hormones in the pill were making my symptoms worse so they decided to put me on the new injection contraception treatment (it was being trialed in Australia back then - Depo Provera). On that, I didn't get a flow at all but because it was new, there wasn't alot of information so I thought it was normal.

    Then when I was 25 and was engaged (to who I thought was going to be my husband!!), we talked about going off the injection so "we" could get my body back into natural sync so we could start a family. It was only a couple of months later of things not being normal that I asked my (new) doctor if he could investigate what was going on with me... I was sent to a specialist and he confirmed PCOS. I never linked being overweight or hairier to the ovaries, I've (thankfully) not had any thyroid problems. The specialist prescribed Metformin and then when we still weren't conceiving, prescribed Clomid. I was on that for about eight months and still nothing so I (as my ex had lost interest in the project by now) went to an IVF seminar to find out what I needed to do. Realising the stress I was under, I decided to let go of what was happening and try and enjoy life for the now.

    I moved countries, dumped that nutter and now deal with my PCOS naturally as I don't like to take drugs (thankfully my symptoms don't seem as bad as some of the other sufferers here)... maybe not getting pregnant was a sign that he wasn't the man to father my children!
  • moesaid2
    moesaid2 Posts: 67
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    THANK you all for your responses. I'm beginning to feel a little better knowing that SOMEONE can provide me with information even though the doctors are little help!!!

    It's also good to know that this is manageable!!

    I have had my blood sugar tested (quite often because of diabetes in my fam), and my fasting glucose is 85. I'm not sure if this is related in insulin resistance, but I will be doing my research.

    Are there any good books???
  • Chainie
    Chainie Posts: 82 Member
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    You can test for hyperinsulinemia (too much insulin in the blood).  And if you want, hyperlipidemia (too much cholesterol and triglycerides in the blood).  If you are going to the doctor for tests, I suggest you do this BEFORE you start the vitamins and supplements that I would suggest for controlling your IR and hormone imbalance (pcos).  your doctor can also look for elevated serum uric acid and ferritin levels, moderately elevated blood pressure, abnormal lipid profile.  Your doctor may also perform liver function tests (gamma-glutamyltransferase) and evaluate the adequacy of magnesium (often depressed/deficient in IR).  IR is NOT diabetes (yet).  Opinions vary but about 1 in 4 IR people go on to become diabetic (Lukaczer 1999).  One of the best measures for IR may be fasting and two-hour post-prandial serum insulin values following a 75g glucose challenge.  Elevations above 15mcIU/mL (fasting) and/or 50mcIU/mL (postprandial) indicate increased insulin levels secondary to insulin resistance (Bland 2000).  Some sources view levels above 5mcIU/mL to be cause for concern. 

    But I am not a doctor. Just a chicken that knits. :-)
  • moesaid2
    moesaid2 Posts: 67
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    I moved countries, dumped that nutter and now deal with my PCOS naturally as I don't like to take drugs (thankfully my symptoms don't seem as bad as some of the other sufferers here)... maybe not getting pregnant was a sign that he wasn't the man to father my children!


    You are prolly better off :-)....what are you doing naturally? I'm NOT a big fan of meds and pills......
  • NNAhuja
    NNAhuja Posts: 669 Member
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    I was diagnosied with PCOS when I was 16, I didn't have a period for over 10 months, twelve pregancy tests and an ultrasound confirmed I wasn't pregant although it was charming that that was all the doctors assumed. I was finally refered to a specialist who confirmed from the ultrasound that I had PCOS. Everythign else I have found out about it was through my own research as the specialist and doctors didn't really elaborate they just said you have PCOS go to it and good luck.

    I'm glad I didn't have this same experience. Do teenagers hide pregnacies THAT often?!? I'd think PCOS would be less common if doctors actually gave their patients treatment plans so they can get better!
  • miranda_mom
    miranda_mom Posts: 873 Member
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    Hi,

    sorry to hear about all this craziness. Here is what happened to me:

    My periods have always been irregular but I've been on birth control most of my adult life. In 2005, my husband and I started TTC. I went to the OB because my cycles were 6-8 weeks, sometimes longer. OB sent me for a pelvic ultrasound and bloodwork but said I had to actually go to my family doctor to get my diagnosis. He told me I had a "borderline" case but not enough for the actual diagnosis. I started watching my carbs and got pregnant within a month.

    My husband and I started TTC again in December. My cycles have been much longer this time. I went to my family doctor in march (cutting out the middleman - my OB - since she just sent me to the family doctor anyway) and he ordered another pelvic ultrasound and more bloodwork. I went back to him and he said it was enough to diagnose me. I have been on Metformin since April and had my dosage increased about a week and a half ago.

    Good luck to you!
  • tas3980
    tas3980 Posts: 93 Member
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    I moved countries, dumped that nutter and now deal with my PCOS naturally as I don't like to take drugs (thankfully my symptoms don't seem as bad as some of the other sufferers here)... maybe not getting pregnant was a sign that he wasn't the man to father my children!


    You are prolly better off :-)....what are you doing naturally? I'm NOT a big fan of meds and pills......

    Clearly better off... I hear from him every now and then, looking to meet up and he has a wife -- can anyone say DOG!!!

    There isn't actually anything I do... I just deal with the irregular flows as and when they come, I'm lucky to have fair hair and skin so my hairiness isn't obvious unless I point it out and being cuddlier is just something I'm trying to change through a healthier lifestyle... Who knows what issues I will have when I finally meet a man and ttc, only time will tell...
  • kit1986
    kit1986 Posts: 23
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    Hey all,

    I was diagnosed when I was 15. I suffered from severe period pain and was extremely moody, snapping at my parents for no reason. I went to the doctor regarding the period pain and they tested my glucose and testosterone levels which were both high. I also gained about 20kgs in about about 6 months as well. It was because of that that I was diagnosed with PCOS.

    At that point I didn't have any other symptoms - my period was (and still is) quite regular (every few weeks) so I did what any 15 year would do when told what to do - I did the opposite. I was told to eat a healthy diet and avoid sugar foods and high carb foods, so I ate nothing but crap. I gained an additional 20kgs in a space of 3 months for that rebellion and ended with the symptoms of excess hair and my once extremely thick hair now balding to the point where you can see my scalp.

    I still rebel when it comes to my food and it is now getting to a stage where though I want to get my symptoms under control that I just don't seem to have the motivation to do so. It's not easy when your 40+kgs overweight and the only way to control the condition where the main symptom is weight gain is to lose the weight.

    I don't use medication - I have tried metformin a couple of times but the side effects are too much for me to handle (severe nausea and upset stomach); though I'm on a high estrogen birth control pill at the moment.

    I'm also finding that this condition is starting to affect me emotionally - I'm shy the best of times around people but add in the fact that I'm constantly on guard because of my weight and the symptoms I've got that I tend to get my back up around people and push them away; and don't get me started on the bouts of depression that hit without warning - one minute I'll be laughing the next I'm absolutely hysterical. I HATE IT!!!

    Anyway that's my story (and little rant lol)

    Cheers
    Kate
  • moesaid2
    moesaid2 Posts: 67
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    @kit1986...thanks for sharing. I'm new to all of this and I'm still trying to figure out what's going on with my body. I have found that anything related to hormones require eating the proper diet. That's easier said than done.
  • npeeks22
    npeeks22 Posts: 18 Member
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    In Dec of last year, I went to yet another ob/gyn because the previous ones would not take the time to help me. My periods were lasting 3+ weeks at a time and very heavy. Theur only advice were to take some freaking birth conrol pills. Finally, I found a wonderful ob/gyn who tooo the time to listen. She performed a normal pap, did an ultrasound and drew some blood work. She voiced her concerns that she though it was PCOS and wanted to be sure. A few days later, she called and told me that it was in fact PCOS and that she wanted to do a pelvic ultrasound to make sure none of the polyps were cancerous. She also phoned a. Prescription for Metformin to my pharmacy and instructed me on lifestyle changes to control my PCOS.
  • jeweloflibra77
    jeweloflibra77 Posts: 6 Member
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    I was diagnosed approximately 3 years ago. I had two successful pregnancies 9 and 14 years ago. I had my tubes tied right after my son was born, when I was 25 years old. I had a few ovarian cysts before but didn't become a major issue. Then in 2008 I started having missed periods. The longest I went was 6 months without it. Other not so fun symptoms was weight gain, acne, and more air on my face and torso. All it took was doing a bit of research on the internet and then getting an ultrasound along with blood tests. I have since had a hysterectomy (at 33 years old() due to a prolapsed uterus. My ovaries are still there. I wish they would have taken them as well since they are still causing me grief. I guess the benefits of having them outweighs the negatives of PCOS. I guess still being quite young is part of the reason.
  • fbmandy55
    fbmandy55 Posts: 5,263 Member
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    I have always had some issue going on but in about 6 years and 5 doctors, no one would do anything but a thyroid test. My mom and grandma have hypothyroidism so the docs all assumed i did also. Went to my 6th doctor weighing 265lbs, hair in places I hated and cystic acne so bad that I couldn't touch my face because of the pressure and pain. He knew right away that I had PCOS, in fact, he diagnosed me within 15 minutes of meeting him. Bloodwork proved it.

    Got on BC and Aldactone and my skin cleared up right away and I dropped 25lbs with diet and exercise withing my first 3 months.
  • whatwouldmulderdo
    whatwouldmulderdo Posts: 31 Member
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    I am wondering if I really have PCOS.
    I have been on BC since I was 14 due to irregular and debilitating periods. When I was 19 I started having excruciating pain that felt like I was being stabbed in my pelvic region. I figured theses were what people meant by cramps (since I had never had them), and went on with my life, just having to deal with horrible pain once a month. Sometimes the pain would drop me to the floor. Finally when I was 23 my family convinced me to go get my pap test, I was not sexually active so I had put off doing these tests. I went to an OB/GYN and he sent me to have an ultrasound. It came back that I had a LOT of fluid in my pelvis and a lot of cysts on my ovaries. He told me I had PCOS, but my blood work was fine, and the only medication I need to take is BC. He changed my dosage and my cysts got better. I went off BC to see what happens and I do not have a period, the cysts come back, and I start growing dark hair on my face.
    Can I have PCOS if my blood work is fine?
  • Chainie
    Chainie Posts: 82 Member
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    I am not a doctor, I am just a chicken that knits. But I've had PCOS since 17 and I have (in more recent times) done a lot of research on PCOS and IR and well... you scream PCOS to me sweetie. That whole drop to the kitchen floor thing, that's a cyst rupturing. Had that plenty of times before I learned how to control it naturally. Best wishes. Xx