MyWayortheSkyway

Just to be upfront, I am posting for my sweetie. She is too upset to deal with any more.

My girlfriend has been having trouble for quite some time. I finally convinced her to see an endocrinologist. She was very resistant, because the last several doctors said all the cruel things you all are familiar with. 3 TSH tests had magically been just under the high end of the test range. Her symptoms closely followed that of someone hypothyroid, which is why I was so persistent.

The visit with the endo went well to start. The doctor agreed the tests were suspect. A nodule was found on the thyroid, but she was told it was no big deal. She was then told she probably has PCOS, but they don't do anything for that there at that office. They performed more bloodwork, and were going to call with medication after they got levels.

Friday, one of the office workers called and told her, "everything was fine, and you don't need any medicine". Of course, the doctor wasn't there on a Friday. Following an agonizing weekend, my girlfriend called them back Monday, which led to a return call later. They feel their labs show a reasonable level of thyroid function, and the other labs are all wrong. They also said, they are the doctor she needs to see for her type of symptoms, but she will have to come back in 6 months for another evaluation.

She is devastated, and has 100% given up hope. We spent money on this we didn't have (no insurance). I want them to at least order some simple hormone tests. Unfortunately, I had over ten years of experience with PCOS with my ex. Many symptoms are the opposite of what a PCOSer would have. I have spent dozens of hours on here, looking for links that I might not be aware of from my past experience.

This is already long enough, so I'm sure I'll start a thread elsewhere on the particulars. The main thing I want to know... Is basically, how to strong arm the doctor into doing his job. I really feel the PCOS here is a cop out. Even if it isn't... no doctor would ever think it would fix itself in 6 months.

Any tips to get her back into the fight would be wonderful. Her family is very negative, eventhough her mom, grandmother, and great all had reproductive troubles (mostly endometriosis) and some family members have thyroid problems. Right now, as the only one fighting, things are getting very hard.

Sorry this was so long, but part of getting it out was therapeutic.

etuc

Welcome Myway
Here are some links that might help
The Newbie Road Map
Guide to understanding Lab Results for PCOS...

The second post in the second link explains how we can sometimes have what appear to be normal lab results. She should get a copy of all test results.


Sorry I am a little baffled by-
Did they come up with any diagnosis?
What are her symptoms?

I hate to say it but I think it helps to have somebody go to the Dr with a patient, my ex had graves disease and heart problems due to it and I always went with him.

Best of luck!

aj1785

Welcome to SC Skyway!

I'm sorry to hear that you're having such trouble getting your girlfriend the help she needs. I struggled with hair loss, severely fluctuating weight, goofy cycles, and terrible acne for 8 years before finding a doctor that diagnosed BOTH pcos and hypothyroidism. Getting the diagnosis I needed actually required going to a high risk pregnancy OB/GYN. If it is possible for your gf, I think I would try to get her into that type of doctor. For the pcos and the thyroid both my doctor did ultrasounds; has your gf had either of those ultrasounds?

Eva37

welcome to sc could your gf see a different dr?? i had to change surgery to get any pcos help.
eva

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Me - 41, hubby 36 son 11. Married 14 years

She is buffeted by the wind, but she does not sink.



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splashsmama

Skyway,

What are your girlfriend's symptoms?
Maybe there's someone on this board that is experiencing the same symptoms as her and could help point you guys in the right direction.

MyWayortheSkyway

Thank you for the welcome and links. I have a copy of the labs and have been researching them. Every doctor has refused to do any test outside of the bare minimum.

The doctor threw out PCOS as a probability. They feel PCOS is a RE specialization, therefore they don't handle it at their office. Following an ultrasound at the office, they did find a nodule on the thyroid. The office won't give reasons for not acting. They just tell her she is going to have to wait, and will not refer her to another type of specialist. Not that we have any money left... this dr visit wiped out my next two trips.

Symptoms
-Body wide hair loss (head, eyebrows, arms, eyelashes)
-Massive weight gain - 100+ in last 4 years
-the weight gain is very pronounced in her neck in the last 6 months
-excessively long periods (was put on BCP to end an 8 month long period)
-Incredible mood swings and crying completely contrary to the situation, and cries most of the time
-constant cold (sweatshirt and sweatpants in June in central FL)
-general fatigue/poor sleep
-Rapid heart beat and a "hollow chest" feeling
-constant TMI stomach upset and headaches
-loss of sexual interest intermixed with moments of extreme arousal
-horrible dry skin (she goes everywhere with lotion and is always applying it)
-tingling in hands and feet
-long healing time for sunburn, sometimes other skin damage with ease (blowing out veins when drawing blood)
-excessive thirst

Tests
TSH 5.3 4.746 and 2.981 (at labs with 5.5, 4.75 and 3.0 as cutoffs)
T3 3.07 and 3.43
T4 1.1 and 1.08
antiTPO/anti Tg 1.8 / 20.3

all CBC numbers well within range

liver enzyme tests "amazing" with very low numbers

triglyceride/cholesterol is 206/208 but HDL is 54 which drs said was unexpected

Sodium was also low at 135 (which really upset one dr, because he pinned everything on her being "fat" and she needed to reduce salt intake)

with a 12 hr fast her glucose was 60

Now, my girlfriend is only 22 and was an athlete in college. When she first arrived she lost 30lbs that semester. All of these drs have implied she is lazy and fat and that is plenty of reason to not put forth any effort at a diagnosis. We eat similar diets, and she eats smaller portions/less frequently than I do. I have lost 45lbs (mostly by getting rid of sodas) during the same time she is gaining more than that amount. Obviously, there is a problem.

I think some symptoms, like the hollow chest, are related to low blood sugar. The thirst could be a side effect of using the bathroom so much and might also be why the sodium level is so low. From the beginning I have felt this was hormone related, yet no one will order a test. I can't get a reputable lab to check it without an order.

The hair loss, insulin/blood sugar, lack of acne, dry skin, excessive length of bleeding, but not cycles seem to totally contradict any of the 5 PCOS diagnoses laid out. I really think it was said to her to make her give up at its mystery and complexity.

I tried my best to be there at actual visits. We are currently over 500 miles apart, and one infuriating thing is several doctors pushing back appointments and expecting me to hang around for two additional weeks at their whim.

splashsmama

SkyWay,

So your gf was able to talk to the dr directly when she called back regarding her test results?

Like you, I really suspect she has hypothyroidism. I went to the link below and she matched several of the unusual symptoms, especially the sensitivity to cold, dry skin, unexplained weight gain, and unusually heavy periods.

http://www.mayoclinic.com/health/hyp...CTION=symptoms

I wish I could be of more help. I honestly don't know why the dr isn't willing to help her. And I know it feels like you guys have yor hands tied because money is tight.

My heart goes out to you both and I pray something works out for her and someone can help her.

splashsmama

Other helpful websites to look into hypothyroidism more:
http://www.nlm.nih.gov/medlineplus/e...3.htm#Symptoms
(*This one mentions the thinning of the eyebrows as one of the Late Symptoms.)

Some other conditions associated with the thyroid:
1. Hashimoto's Thyroiditis (http://www.nlm.nih.gov/medlineplus/e...1.htm#Symptoms)
2. De Quervain's Thyroiditis

The symptoms all seem to be roughly the same as your gf's. It's obvious the cause of her symptoms is linked to her thyroid, which we know has something going on with it based on the ultrasound.
I'd say, yes, her health is at risk. When it starts effecting her cardiovascular system and giving her heart palpitations, something needs to be done and you need to get her on some kind of treatment.

If my husband were in your shoes and he saw I was suffering from the same things she is, yet the dr would do nothing, then you can bet money he would strong arm someone down there to write me a prescription to at least see if it would help me.
They can't let her go untreated; the poor thing is suffering. They have to at least help her...it's their job.

MyWayortheSkyway

The "real doctor" of the office has done nothing. An assistant conducted the ultrasound, and only the front office ladies have called her back. They are doing a crude message passing back and forth type communication.

I am trying to refrain from calling there and opening a can of whoop[tail]. I'm sure them saying they can't discuss her condition with me (as I am only a boyfriend) will send me over the edge. It has taken a lot of energy to get past the first three retard doctors. We can't keep paying people, only to do all the work, get tests, barely admit they are wrong, and then send me to another doctor with her.

Tomorrow is going to be very unpleasant for whomever answers the phone. I hate it has come to this, but if I wait, they wont be there Friday, and who knows what they will do next week for the holiday.

MyWayortheSkyway

I actually tried a peaceful approach, but they refused to talk to me. I motivated my girlfriend to call them. They told her they were treating her and she needed to return in 6 months. She told them she refused to wait 6 months for treatment. After about 5 mins of arguing test result numbers, Debbie the office manager told her there was nothing wrong with her thyroid, and certainly nothing that required medication. (What the crap is the 6 month appointment suppose to be for? ... to check the "ok" growth on her "ok" thyroid?) The only blood work they would consider was that which was conducted at their office. She said my girlfriend has PCOS. My girlfriend armed with knowledge and symptom information from here, began rebutting this. The office manager told her none of that mattered and that the tech "touched on this" at her first appointment. ("Touched" meaning the sole sentence "you probably have PCOS") My girlfriend demanded examples, and Debbie told her that it wasn't her thyroid so it must be PCOS. She further stated all they do in endocrinology is thyroid. She refused to give any reason for a PCOS finding. The office manager kept repeating the same things over and over trying to steamroll my girlfriend, so she hung up on her. I was very proud of my girlfriend. Needless to say, we give this office a big thumbs down. Since the "real doctor" hasn't been involved in any of this, I will give them another day to sort this out in good faith. (I'm sure that overbearing manager keeps profits high, but there is a chance the doctor will do the right thing) After that I am certainly going to post every bit of information I can on this office as a warning to the general public.

Thank you for all the help and information, everyone. I feel it was put to very good use today.

jenn24291

I have the same problem with doctors I think I'm hypothyroidism the Endo told me my thyroid was fine and tested and treated me for PCOS . So I feel you pain .Not sure if I can post this but here is a place to get blood work health check usa

SnowFlower

Welcome and tons of good advice above!

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Zashes

MyWayortheSkyway,

Your girlfriend is definately suffering from hypothyroid.
Doctors have become very difficult with this disease but your girlfriends TSH are VERY high. AGAIN most people would be diagnosed with hypothyroid with those labs...She may have Hashimotos which cycles and therefore you get various readings....AGAIN her TSH is screaming hypothyroid.

Here are two websites that will help you help yourself. They will teach how to read those labs correctly and allow you to ask others about the labs you need to get.

I am not allowed to post links so Google Stopthethyroidmadness and realthyroidhelp for the forum

Hope this helps

Judy