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Thyroid  (Expert Forum)
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Misdiagnosed with hypothyroidism for 10 years
Answered by
Mark Lupo, M.D. - Thyroid Nodules, Thyroid Cancer, hyperthyroidism, hypothyroidism, Thyroid Ultrasound
Thyroid & Endocrine Center of Florida Sarasota - FL
Questions in the Thyroid forum are answered by Dr. Mark Lupo. Topics covered include goiter, graves disease, Hashimoto's thyroiditis, hyperthyroid, hypothyroid, thyroid cancers, thyroiditis, and thyroid stimulating hormone (TSH).

Misdiagnosed with hypothyroidism for 10 years

by doglu, Mar 15, 2006 12:00AM
I'm new to this forum.  I've been tested for thyroid problems several times over the last 10 years due to severe fatigue, zero libido, and infertility which remains unexplained to this day despite extensive testing.  I was always told my thyroid was fine (with TSH at 4.9 in 1998), until 3 years ago when I was finally diagnosed hypothyroid (TSH of 9.0).  My problem now is that I'm on .075 of Levoxyl but my TSH is still 2.8, which my PCP says is "normal".  However, I feel awful!  Too many symptoms of hypo to list.  Never tested my T3 or T4 until recently, upon my insistence after I learned that TSH is not the only factor that is indicative of thyroid problems.  Test results: TSH 2.8, free T4 .85.  Still didn't test T3 even though I specifically asked.  My doctor says to stay on my current dosage of Levoxyl.  Should I find another doctor?  Also, can reduced libido be caused by hypothyroidism?  Many thanks.

by Mark Lupo, M.D., Mar 15, 2006 12:00AM
The TSH is the single best test we currently have -- while it is not perfect it is the standard of care in following thyroid function.  However, 2.8 is too high in my mind.  I try to keep patients between 0.5-2.0 -- so would increase to 88mcg.  Low libido is seen in low thyroid states, but there are other causes as well.
Member Comments (4)

by snake lady, Mar 15, 2006 12:00AM
To: doglu
Where do I start?  The range for TSH right now is .3 to 3. and even this is not really a true picture.  When my free T4 is .81 and free T3 is3.5 both within the range reference my TSH is .001.  Now I am on Armour thyroid and it has a tendency to skew the results of the TSH.  I have taken Armour for 35 years and wouldn't change.  One time a doctor convinced me to try Synthroid and in 2 years I gained 30 pounds.  Then the next doctor said ok to Armour but only gave me one grain (60)  mg. and it wasn't enough.  Now I take about two and a half grains and feel lots better.  Here is my suggestion.  Research a lot.  There is so much more you can find out if you look. There is a very good site called  Stop The Thyroid Madness and the woman who runs it has all kinds of links and references. I have Emailed her a couple of times.  Just don't give up and if it were me I would ask to be put on a trial of at least one and a half  grains (90mg) of  Armour. Oh yes also get the book Hypothyroidism the Unsuspected Illness by Dr. Broda Barnes.  Lots of good down to earth information written so you can understand it. Lots of Luck.Dee

by doglu, Mar 16, 2006 12:00AM
Wow, thank you!  I appreciate it very much.  I know it's not normal to feel this way! I have complained to so many doctors but none of them has treated me properly (in my humble opinion).  I'm sleeping 12-14 hours on weekends, have been going to the dermatologist for months for scaly dry skin which refuses to clear up, my weight is up to 200 pounds and it's a struggle to get through each day.  All this while my thyroid is supposedly fine!  What really upsets me is that I know thyroid problems affect fertility, and I have been trying to get pregnant for 7 years.  I'm going to be 41 next month, so it's likely too late for me to have a child, even if I get straightened out.  That just breaks my heart.  I searched the web for a thyroid specialist and made an appointment for next week, so I'm optimistic.  Thanks again.

by snake lady, Mar 16, 2006 12:00AM
To: doglu
First don't get discouraged.  Now who said you are too old to have a child.  I had 2 between 34 and 36 and that was almost 40 years ago.  Here is the interesting part I did't even know I was hypo-thyroid when the doctor diagnosed me and about 6 month later after being on the dessicated thyroid I was pregnant.  Who knew. There is another site run by Mary Shoman believe you can just enter her name plus thyroid info on the search line and get to her site.  She puts out a weekly newsletter and also sponsors a best doctors list by your address. This site has a lot of information about various things affecting your thyroid.  Also look for the list of foods that can hinder your thyroid--and don't drink fluoridated water --fluoride is what they give to hyperthyroid people. good luck and don't give up!
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