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New here.. im so miserable!

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Old 02-14-2014, 11:22 AM   #1
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Default New here.. im so miserable!

Hello,
ive been registered here for a while and mainly lurking. I thought I might ask for help from some of you ladies dealing with PCOS and the miriad of hormonal nightmares that goes hand in hand..
First, ive been to 7 doctors in 3 years. Noone can figure out what is wrong with me. I am 38 and healthy. Three years ago things starting sliding down hill...joint pain, all over body aches, brittle nails, thinning hair, fatigue, insomnia, irritability..weight gain and the inability to lose weight no matter how strict my diet and exercise is (ive never had weight issues. I eat low carb/ paleo/ low glycemic veggies, no soda, no artificial sweetners, no gluten) I try really heard to keep my eating clean. I work out an hour a day on my lunch.

I have had thousands and thousands of dollars worth of bloodwork only to be told over and over "you are within range. I have no idea why you feel so bad".
One doc puts me on thyroid meds, one takes me off.. one puts me on estrogen cream, the next takes me off..im ready to scream.

I finally got to see an endo. He looked at tons of bloodwork and said I should have never been on thyroid meds. My TSH was like 0.01 forever and the Frees were mid range. So he weans me off and sends me for more labs. Diagnosed me as "exogenous thyrotoxicosis/ hyperthyroidism, soley because of the supressed TSH.

I told him I believe I have PCOS with insulin resistance and defientely a sluggish thyroid, he said no, no.. you dont have PCOS because you have regular cycles. I said yes but they could be inovulatory because my progesterone levels are through the floor.. we argue and I leave mad and more depressed than ever. He wants me to do thyroid labs again in 5 weeks, appt in 6.
Here are my fasting labs taken several days after stopping the Armour.

I tested on day 22 of my cycle (luteal phase)
He didnt test my progesterone this round for some reason, but everytime Ive ever had it tested its almost non existant. (you need ovulation to occur in order to produce progesterone, right)

I also have a history of cysts on my ovaries.


Estradiol 90 (44-211 pg/ml)
Free T3 208 (202-443 pg/dl)
Free T4 0.5 (0.7-1.9 ng/dl)
FSH 7.1 (1.7-7.7 miu/ml)
LH 9.8 (1.0-11.4 miu/ml)
Glucose 96 (70-99 mg/dl)
TSH 1.13 (0.27-4.20)
Free Testosterone battery 48 (2-45 pg/ml)

From hours and hours of online research (endocrinology blogs, not just forums) i see that high androgen levels, low progesterone, weight loss resistance, elevated FSH and LH all point to PCOS and insulin resistance.

Can someone please please please help me with my numbers? If I hear one more time "your labs are fine" im going to off myself (not really but its tempting)


Thank you a million to anyone willing to give some feedback.

Tracy
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Old 02-18-2014, 11:49 AM   #2
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i wish I had something helpful to tell you but I'm not sure about that. I just wanted to say ((((((hugs))))))
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Old 02-19-2014, 12:01 AM   #3
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I don't know what else to say but I have also struggled with not being diagnosed with PCOS but having alot of the symptoms, excess hair, acne, weight gain..

I think your eating should help you out. I agree though your TSH is very low, but that may mean PITUITARY problems, the pituitary isn't sending out a signal for any so it is staying low. I hate it for you but you will have to find a very knowledgeable doctor or else someone who is willing to work with you.
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Old 02-26-2014, 01:09 AM   #4
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I have PCOS with a lot of cysts on my ovaries, I couldn't get pregnant for awhile because of the cysts and other issues, including my weight. I went from hospital to hospital but they just kept on telling me to lose weight, I literally had to do 4 hours of non stop exercise every single day for months before I fell pregnant. I also remember the doctor prescribing medication for diabetes to help with my stomach fat or something like that.

My friend has the exact same problem as you, she is fit and healthy and the doctors don't know what her problem is. The doctors have put her on so many medications that weren't meant for her, she has PCOS with cysts on her ovaries and can't get pregnant. I hope you issue gets sorted out, I know how frustrating it can be.
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Old 03-05-2014, 11:21 AM   #5
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Default You are HYPO

You have the symptoms of hypothyroidism and PCOS. Fire your doctor! You cannot diagnose anything by TSH alone. Apparently, your doctor doesn't see that your FT3 is LOW and your FT4 is LOW! Don't look at the, 'range.' They differ for every lab. They base those ranges on who? Sick people!
Your testosterone is HIGH and you have symptoms of PCOS...big clue here doc!
Have they ever tested for Hashimotos? The tests you need are, TPO, TGab, and CMP, in addition to the thyroid labs you have and progesterone. Some will argue the total T3 and T4. They are a good addition to the Free's, just to get a ratio.
(If you have been gluten free for awhile, you probably have Hasimotos under control-if you have it.)
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Old 03-06-2014, 09:08 AM   #6
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All I can say is keep looking for a new doctor in your area who is willing to work with you. Unfortunately our healthcare system is just a mess and doctors are so afraid of being sued that it really stands in the way of clear diagnoses. I was overweight my whole life and no one ever tested my thyroid. I moved to a new place and got a new doctor who thought my thyroid was slightly enlarged and we ended up finding out I had hashimoto's and a thyroid nodule (tumor). Even then my endo was very reluctant to suggest surgery or any treatment course. I spend 18 months having ultrasounds and biopsies every 3-4 months to get the same answer. You have a a 1-10% change that this is cancer.

I kept asking the doctor what I should do and she kept giving me the stats. It took sheer exhaustion from the process and desperation until I finally figured out the right question to ask, what would you do if this was you? Then she perfectly and bluntly said she have her thyroid removed. She wouldn't tell me to do it but when I asked what she would do for her she gave me a straight answer! So then I started seeing the surgeon who told me that my thyroid was one of the most abnormal he'd ever seen even via ultrasound - basically it was a battle of epic proportions because of the Hashimoto's, but my levels weren't "that abnormal."

So the moral of my story who the **** knows what normal is? You can have normal range levels and still be sick. In the end I changed my endo again and finally found one who works with me. My endo told me that it will always be a struggle but that I needed a diet and exercise. Interestingly enough the only weight loss program that she supports is weight watchers. She is strongly against anything with prepackaged or prepared food. It works when I work it and I've just accepted that this will be harder for me than other people.

You definitely need to find a doctor who is willing to work with you and who really wants to figure out what is wrong. Have you been able to get any leads from people in your area with similar issues?

Hoping it gets better.

Leslie
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Old 03-06-2014, 09:32 AM   #7
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When I got diagnosed, one of the first things they did was an ultrasound... cysts on ovaries = PCOS. (right???)

If you want to know if your cycles are inovulatory you could start doing the temperature every morning charting. That was another thing that the doctor's made me do. Of course, I was trying to get pregnant...but still it would be a good thing to give your doctor, if he/she's not listening...

Good luck!
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Old 03-06-2014, 11:55 AM   #8
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Don't lose hope...which I know sounds stupid, when you feel lousy. You may never find a Doctor to, 'work,' with you. Doctors are taught wrong. Only YOU know how YOU feel. Don't let them tell you how you feel. I personally went through 10 doctors. I always left in tears and hopeless, because they wouldn't listen to how I felt.
Research is going to be your only friend. You have to be your own advocate and Doctor. Learn the science behind the endocrine system. Don't believe everything you read either. Some, 'science,' is tainted by these same ignorant Doctors who are keeping you sick. They hear the same information long enough and they start to believe it, without doing their due diligence. I suggest reading medical journals, from before synthroid was brought to the market.
You have to also work on your adrenal health. (Try to find a doctor who will even admit their is a problem, without an adrenal crisis, like Cushings, or Addisons.) Your body needs cortisol, to convert T4 to T3. Without it, T4 will convert to RT3. High cortisol isn't good either. It will suppress your TSH and also give you hypo symptoms. You will need a 24 hour saliva cortisol test, which unfortunately, you will probably have to pay for yourself. You will also need your DHEA tested, RT3 and vitamin deficiencies.
Stay away from gluten!! No cheating even a little bit. Anyone with thyroid disease must avoid gluten like the plague. The protein in gluten, resembles the protein in your thyroid. When your body makes antibodies against the gluten, those same antibodies attack your thyroid.
You need iodine therapy. The, 'T' in T3-T4 is actually iodine molecules. T4 has 4 molecules of iodine-take one away and you have the active thyroid hormone T3.
"Incomplete conversion of T4 to T3 can also lead to low thyroid symptoms. T4 receptors in the body have not yet been identified; therefore, T4 needs to be converted in the peripheral tissue to the more active thyroid hormone T3 in order to relieve low thyroid symptoms. T4 is converted into T3 by removing an iodine from the T4 molecule at the 5 position [Source: Paoletti]. Factors such as nutritional deficiencies and medications can inhibit this conversion. Nutritional deficiencies such as iodine, iron, selenium, zinc, vitamin A, riboflavin, pyridoxine and B12, along with the use of certain medications including beta blockers, birth control pills, estrogen, iodinated contrast agents, lithium, phenytoin and theophylline can inhibit the conversion of T4 into T3. Other factors that can cause this inhibition include aging, alcohol, alpha-lipoic acid, diabetes, fluoride, lead, mercury, pesticides, radiation, stress and surgery [Source: Brownstein]."
This kind of information is easily found, if you just search. Again, don't take my word for anything, do your own research and make up your own mind. BTW, you can find governmental websites with this information. Also, look up the Scottish Thyroid Petition. Good Luck.
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