My story and some advice needed (long)

LeanneinTexas · 05-15-2005, 01:02 PM

I've been a member for a long time, but do not post much. I've recently been diagnosed with hypo too now. Just want to share my story and get some advice:

As a kid,teen, and in college I was always thin (115 pounds). Had normal periods, was always hairy (italian heritage) but nothing extreme.

Then about my 3rd year of college I met my dh and my weight started to creep up. within 2 years I had gained 65 pounds and weighed 180. I was still pretty active, doing step aerobics 5 times a week, started developing facial hair, acne was out of control. i was living away from home and my mom came down for a week to visit and took me to a dr. He basically told me all my problems were caused from the extra weight and I would be back to normal if I lost the weight. My mom argued with him and told him i dont eat like a pig and exercise regularly. He told her that she did not live with me and only observing me for a week, he said "you dont know what she is doing when you are not here". I left his office in tears.

My mom did not stop there. She brought me to a doc back at home. He didnt even take new labs, I brought my labs from the wacko dr. from college. He looked at my labs and said I was Hypothyroid, he said the other dr. was crazy for not seeing it! So he put me on Synthroid and sent me on my merry way.

Within the next 6 months i lost 30 pounds just in time for my wedding. Well we got pg right away (like on our wedding night).

I gained alot of weight with the pregnancy and was not on synthroid any longer for my good doctor moved and started practice somewhere else. After i had my daughter i weighed like 215. I tried everything to lose the weight but kept gaining. I was up to 230 and decided to see a dr. and get checked. Everytime I would go to the doctor, they said my thyroid was normal and I just needed to lose weight.

So i made an appt. with endo and this is where I was diagnosed with PCOS. Although he just wanted to put me on bcp. (didnt know about glucophage yet).

we then ttc # 2 with no luck whatsover. i got recommendation of a good reproductive endo from a friend and made appt. He put me on glucophage (IR), ran bunches of test. (thyroid normal) and we then begin clomid. We got pregnant after 2 rounds of clomid.

I felt wonderful being pregnant. I lost weight, skin cleared up, was so energetic. I left the hospital weighing 20 pounds less than my pre-preg. weight. Also, obgyn had taken me off glucophage while pregnant.

About 5 weeks Post partum, I felt the change. PCOS was back with a vengence. Til this day i still cant believe how dramatic the change was and how noticeable it was. Weight skyrocketed back up to 230.

So the time between when I had my dd and ds was 6 years. In this time, I've stayed a steady 230 pounds, everytime I would try and lose I would stall at about 210-215 and could not for the life of me get off the plateau.

So last week, I bit the bullet and went to a new dr. He is the guy who actually took over the dr. practice for which I was diagnosed with Hypo in the first place. He is also a weight reduction doctor. He ran bunches of tests. Put me on diet (low carb) and told me he would call me with test results and would put me back on glucophage if tests came back abnormal. To both our surprises insulin came back normal, but I came back hypothyroid. He prescribed synthroid, and I'm to go back in 30 days.

I've been doing really well on the diet, down 12 pounds. When I go back in next month, I will get copy of all my blood work results so I have no clue what my numbers were or exactly which tests were run. (although my receipt has the following tests: thyroid panel, complete metabolic panel , lipid profile, tsh)

so that's where I'm at now. I've been searching for a new (good) endo and think I found somebody and made appt, but cannot get in until July.

So I'm still trying to take all this in. Is it possible i've been hypo this whole time? I'm also skeptical on my insulin results. He only did fasting insulin test, should he have done the glucose tolerance test, where you drink the orange stuff and get blood drawn in intervals to get a better diagnosis? Any other tests I should demand the new endo run?

Thanks for reading this super long post.

nobimbo · 05-15-2005, 05:08 PM

Hi Leanne,

I'm glad you've decided to get your latest lab results for your own records. When a doc tells you that your thyroid test results are normal (as previous docs did) there's no way to know for sure unless you see the actual results and which tests were actually run. The usual screening tests done are the TSH and the Total T4, but interpretation of those is very subjective depending on the doc (for instance, some docs will only treat when the TSH is over 10, no matter what the symptoms, and other docs realize that most people feel best when TSH is about 1 or less (the newer lab range goes up to 3.5 now, whereas before it was 5 something). Also, TSH is often the last thing to rise, and it's important to get a Free T4 and a Free T3 as well (the free's tell how much thyroid hormone your body is actually using, not just how much is present in the blood). In addition to the Free T4 and Free T3, you might want to also ask for a TPO antibodies test to rule out Hashimoto's Thyroiditis (autoimmune disease that is the most common form of hypothyroidism and which is commonly found in women with PCOS). In Hashi's, the thyroid hormone output often waxes and wanes as the thyroid is being attacked by antibodies, and there can be periods of normal thyroid function and even hyperthyroidism before the thyroid gland eventually "dies", a process that can take many years.

It's not unusual for thyroid problems to flare up during or after pregnancy (same with PCOS symptoms). And the fact that you took synthroid for a while and then stopped puts an added stress on your thyroid gland, which tends to decrease production of thyroid hormone in response to thyroid replacement therapy.

There are many docs now who believe all women with PCOS have some degree of insulin resistance, even though some do not test above the lab range (they believe the usual tests for IR aren't always sensitive enough to detect it). Also, many lab ranges say ">20" for the fasting insulin test, but many experts believe one is IR if they test over 10. So it's important to see the actual lab report to know where your number lies. High triglycerides often point to insulin resistance, so you should get that reading as well. Insulin resistance puts one at a greater risk for hypothyroidism and vice versa, so it's good that you are going to see a good endo to help get this all sorted out. It often takes going through several docs before finding one that is knowledgable about thyroid disease and PCOS, unfortunately.

Good luck!
Linda

nobimbo · 05-15-2005, 05:15 PM

Just want to post the link to the top thyroid docs list for Fort Worth:

http://thyroid.about.com/gi/dynamic/offsite.htm?zi=1/XJ&sdn=thyroid&zu=http%3A%2F%2Fwww.thyroid-info.com%2Ftopdrs%2Ftexas.htm

Also, here is some info about a great sounding doc in Fort Worth:

One such practitioner is Dr. Elizabeth Vliet, an MD who runs Her Place, a women's health clinic at All Saints Hospital in Fort Worth, and author of Screaming to be Heard: Hormonal Connections Women Suspect...and Doctors Ignore. Dr. Vliet does not believe that TSH tests are the almightly indicator of a woman's thyroid health. Dr. Vliet says that symptoms, along with elevated thyroid antibodies and normal TSH, may be a reason for treatment with thyroid hormone. Here's a quote from her book:

"The problem I have found is that too often women are told their thyroid is normal without having the complete thyroid tests done. Of course, what most people, and many physicians, don't realize is that...a 'normal range' on a laboratory report is just that: a range. A given person may require higher or lower levels to feel well and to function optimally. I think we must look at the lab results along with the clinical picture described by the patient...I have a series of more than a hundred patients, all but two are women, who had a normal TSH and turned out to have significantly elevated thyroid antibodies that meant they needed thyroid medication in order to feel normal. This type of oversight is particularly common with a type of thyroid disease called thyroiditis, which is about 25 times more common in females than males...a woman may experience the symptoms of disease months to years before TSH goes up..."

The other issue is the TSH level itself. While at many labs, "normal" range is .5 to 5.5 (with over 5.5 being hypothyroid), my endocrinologist (a 40 year old woman) believes FIRMLY that most women do not normalize unless TSH is between 1 and 2 (considered low by some docs) and that a woman with evidence of thyroid disease will find it hard to get and/or maintain a pregnancy at higher TSH's than 1-2. (I didn't get pregnant at a TSH of 4, a level considered totally NORMAL at my lab, but got pregnant in one month at TSH of 1.2 and just had my baby on Dec 31).(See my Pregnancy Guide.

If you haven't had your antibodies tested, and suspect you may be hypothyroid despite a so- called "normal" TSH test, I suggest you read the following article at my site for more ideas on how to proceed. HELP! My TSH Is "Normal" But I Think I'm Hypothyroid, which offers a look at your next steps -- including defining the "normal" range with your doc, antibody testing, TRH testing, and drugs beyond T4 therapy -- and where to find a doctor to help. Important disclaimer information about this About site.

http://64.233.167.104/search?q=cache:uAAbYpY-vIwJ:thyroid.about.com/cs/basics_starthere/a/antibody.htm+top+thyroid+docs+fort+worth&hl=en&sta rt=1

prunepie · 05-15-2005, 07:38 PM

i cant add anything, cause linda said it all

she is a very smart lady.

i think its great that you believe in yourself even after youj have had some bad experiences with doctors.
i too had some drs say hypo some say no..and its crazy making isnt it???

let us know what your lab tests say when you get the results and hopefully we can help !

xo jen

LeanneinTexas · 05-16-2005, 02:17 PM

thank you guys so much for the info and encouragement!