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Monday, April 17, 2006
April 17, 2006

4/17/06 UPDATE

Today was my 1st appointment with a reproductive endocrinologist, who had been referred by my ob/gyn.  They located my bloodwork from the day of my miscarriage, which they had told me was lost.  In a nutshell, where I was previously considered "borderline hypothyroid" (although no question about producing antibodies) I am now full-fledged hypo, having gone from a TSH of 5.0 (original diagnosis) to 1.9 (after 4 weeks medication) and, the day of my miscarriage, was 7.7 (definitely high).  My levothyroxine was doubled from 50 mcg to 100 mcg.  Here are the highlights, in paraphrased Q&A form:

Q: My TSH went from 1.9 to 7.7 in 6 weeks, although I didn't change my meds at all.  Was my pregnancy responsible?

A: It's possible, since pregnancy tends to be a drain on the thyroid.  Or maybe your thyroid is pooping out from the presence of your antibodies. 

Q: What do you recommend for my next pregnancy?

A: I suggest you come in as SOON as you discover you're pregnant for a thyroid test.  Then we can monitor your levels often to see if you need an adjustment on your medication.  Most of the time with hypothyroid women, meds need to be increased during pregnancy, starting immediately.

Q: [I couldn't help but ask this] Should my original endocrinologist have told me this and had my thyroid levels monitored?

A: Absolutely, yes, she should have.  It's standard operating procedure.

Q: What are your thoughts on whole dessicated thyroid (such as Armour) instead of synthetic T4 (levothyroxine)?

A: 95% of hypothyroid women seem to respond just fine on the synthetic T4.  The problem with whole thyroid is there are different brands with different efficacies, although Armour is pretty reliable.

Q: Any recommendations for supplements?  I've heard of iodine/kelp, selenium, l-tyrosine, zinc....

A: I don't believe in supplements.  Other than prenatal vitamins, don't take anything.  Be aware calcium and iron inhibit absorption of levothyroxine, so take as far apart as possible.  There is iodine in levothyroxine, so don't take additional iodine or kelp, which is basically iodine.

Q: Should I avoid goitrogenic foods?  Do you have a list of what they include?

A: It's really not necessary to go out of your way to avoid them, but you shouldn't gorge on them.  I don't have a list, although I do know it's relatively short, and includes foods most people don't like anyway, such as turnips and brussels sprouts.

The information he gave supported most of the information I already knew from other doctors.  He had no recommendations as to supplements beyond the typical prenatal vitamins, but I wouldn't expect an MD to, as most would consider such recommendations irresponsible.  He really didn't give me any insight as how to do anything differently to prevent (thyroid-related) miscarriage, other than to up my meds and monitor me more closely, which makes perfect sense.

Interestingly, he admitted he would not have put me on thyroid medication for a TSH of 5.0.  I was surprised, since current research indicates otherwise.  Score one for my hives, or my Hashimoto's may never have been diagnosed by my allergist (bless her for being so cognizant of the new TSH normal range).  Sure enough, I did have thyroid disease, as my current 7.7 TSH proves. 

If it wasn't for her, I'd probably still be trying to get pregnant and without a clue. 

My next appointment with a second reproductive endo is next week.  I'll post with more updates.


Posted at 08:49 pm by lisachu
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Friday, April 07, 2006
April 7, 2006


Welcome to my Hashimoto's thyroiditis and hypothyroidism blog.  Here I'll post updates on autoimmune thyroid disease & its relation to pregnancy issues, treatment, and any relevant information I come across.  All my information comes from journal articles, the AACE, ATA (American Thyroid Association), MedLine and conversations with my doctors

I started this blog after talking with others like me on various message boards, and thought it might be helpful to post information in one place, instead of various threads. 

This is a relatively new area of research, so there is little anyone can state with 100% certainty.  However, researchers do universally agree on two things: women with certain thyroid issues do have increased risk of 1) difficulty conceiving, and 2) maintaining a healthy pregnancy (see ATA press release).  Studies are conflicting on whether abnormal hormone levels, thyroid antibodies or both cause miscarriage, but likely hormone levels are responsible for difficulties with conception.

The usual treatment for Hashimoto's thyroiditis is treatment with levothyroxine, which is synthetic T4.  However, ask a different doctor and you may get a different prescription.  Some doctors prescribe synthetic T3 in addition to T4 or use whole dessicated thyroid such as Armour instead of synthetic. 

If you're pregnant or trying, there are other options available, although not widely used.  In addition to levothyroxine, some doctors, particularly in fertility clinics (e.g. Pacific Fertility Clinic in California) prescribe a combination of drugs such as heparin, aspirin and progesterone to reduce chance of miscarriage, also prednisone for help with conception. 

What I find most interesting is this: new laboratory guidelines state your TSH should be between 0.3 and 3.0 mIU/L.  Most doctors, but not all, have accepted this new standard.  Our government currently recommends the new 0.3 - 3.0 standard (the U.S. National Library of Medicine and the National Institutes of Health) which is the standard recommended by the AACE (American Association of Clinical Endocrinologists) and the ATA. If you are stuck with a doctor who rejects this new standard, like I was, and you believe you might be suffering from thyroid disease and/or have a TSH of above 3.0, I suggest finding a new doctor.  Some women report feeling just awful at a TSH of 4.0 and have benefited GREATLY from treatment. 

To further confuse the issue on standards, many endocrinologists believe the optimal TSH is between 0.3 and 2.0 if you are pregnant; outside this range may result in increased risk of miscarriage and develepmental problems with your baby's cognitive abilities (lower IQ).  Many doctors believe this range should ideally be 0.3 - 1.0 if you are pregnant and diagnosed with Hashimoto's or hypothyroidism.

Also, and this is not related to pregnancy, but: elevated TSH levels are a growth factor for differentiated thyroid cancer (DTC). Another reason to keep those levels low.  For low-risk patients, the U.S. government recommends keeping serum TSH between 0.05 and 0.1; for higher-risk patients, even lower.

Also important are studies which suggest thyroid hormone levels fluctuate much earlier in pregnancy than originally believed; the upshot is, check your TSH as soon as your pregnancy test is positive and again during each trimester (see ATA press release), as there is an 85% chance you will need to increase your thyroid medication by 30% as soon as you discover you are pregnant (2).  This is widely accepted by all endocrinologists, no controversy here.  But you should be aware, because not all doctors will tell you to do this.  Why, if it is widely accepted, you ask?  Because not all doctors accept, or know about, the new TSH laboratory standards. 

Your doctor may think you are borderline hypo, when you are actually quite hypo according to the new diagnostic standards.  Your doctor may not believe there is a problem when there is.  It is a small thing to have your TSH levels checked.  And if your TSH is above 2 and you are pregnant, find a doctor who will treat you until your TSH is under 2.  It shouldn't be hard, most doctors will.  But a few, like mine, won't, and you'll be risking a miscarriage or a baby with a low IQ.

I'm throwing a lot of terms around without definitions, but wanted to post the important stuff first.  If you want more information, please keep reading.  I'll talk about contraindications for levothyroxine, alternatives to levothyroxine (which is synthetic T4 only), new research in endocrinology, information from naturopaths, diet tips, thyroid antibodies, pregnancy/miscarriage statistics and more.  I'll also explain what Hashimoto's and hypothyroidism are and list symptoms to watch for (one woman described it as feeling like a "leaden zombie"!)

Click here to find a list of doctors who specialize in thyroid issues.

A good source for medical journal articles is ORGYN.com (registration is free!) I also recommend the AACE (American Association of Clinical Endocrinologists) and ATA (American Thyroid Association) web sites (especially the videos of various endo conferences, you can hear the experts for yourselves), MedLine and conversations with my doctors.  I also like www.thyroid.about.com, which has many great articles and links.


About Me

My name is Lisa.  I'm about to graduate with a Bachelor of Science in Nursing (BSN and RN).  I'm 37 and recently had a miscarriage after conceiving for the first time.  I was diagnosed with minor hypothyroidism in 11/2005 and was told I have Hashimoto's disease. 

My hypothyroidism made pregnancy difficult, but once discovered and treated, I got pregnant immediately (6 weeks).  However, my ob/gyn feels my thyroid antibodies put me at high risk for recurrent miscarriage.

I am fortunate in that my insurance allows me to see a great ob/gyn at an REI clinic (reproductive endocrinology and infertility); soon I will see not one, but two reproductive endocrinologists specializing in autoimmune disease (I figure, it can't hurt to have a second opinion). 

I'm a nurse, certainly not an expert on thyroid issues, perinatology, reproductive endocrinology or autoimmune issues.  I'm just a woman with Hashimoto's trying to have a baby, and will share what I learn here.

About My Experience

My husband and I had been trying for over a year to conceive, when I went to see an allergist for an unrelated health issue (chronic hives). 

The allergist gave me a blood test and determined I produce both types of thyroid antibodies and have Hashimoto's thyroiditis, which is impaired or low thyroid function caused by autoimmune damage (damage from the antibodies).  She said it was a good thing I was diagnosed, because hypothyroidism is linked to difficulties with conception.  She sent me to an endocrinologist, who put me on levothyroxine.  I was pregnant 6 weeks later!!

However, no one told me I was at increased risk for miscarriage.  At 7 weeks, I had cramping and slight discharge.  An ultrasound and blood tests revealed my pregnancy looked perfect.  The baby had a heartbeat and was perfectly positioned.  At 8 weeks, I had more cramping and more bleeding.  Another ultrasound showed the baby still had a heartbeat.  The doctor performed a blood test, but somehow those test results were lost so I don't know what they revealed.  In any case, I lost the baby the next day, having a miscarriage in the doctor's office while doing a third ultrasound.

Speaking from personal experience, and from several medical journal articles I've read, I don't think I could have conceived until my low thyroid hormone output was corrected (TSH went from 5.0mIU/L to between 1 and 2).  Once I went on thyroid meds, I conceived within 6 weeks (it takes about 4 weeks to reach equilibrium, then it was just a matter of ovulation). 

Although no one can say what caused my miscarriage, my ob/gyn believes it's likely my miscarriage is likely immunologic (my ATA and TPO antibodies).  He means my thyroid autoantibodies likely attacked the fetus and caused my m/c.  Most research backs this theory up, although I did find one recent journal article that suggests TPOAb cause progesterone levels to drop (resulting in miscarriage), meaning the problem starts as immunologic but results in a correctable endocrinologic problem, low progesterone.  This would be good news if true.  You can't easily treat autoimmunity.

[UPDATE 4/25: My ob/gyn changed his mind about the reason for my m/c after locating my bloodwork.  My TSH was 7.7 at the time of my miscarriage.  If my baby had been born, his brain would've been fried.  But hypothetically, the autoimmunity issue is still there.] 

It was my ob/gyn who gave me a referral for a reproductive endocrinologist.  The endo I'd been seeing gave me one follow-up thyroid test, which occurred just before my pregnancy, and none during my pregnancy.  It took a miscarriage for her to tell me I should have been tested immediately after pregnancy, and once every month after that. 

Learn from my mistake and get tested early and often!!!

What is Hypothyroidism and Hashimoto's Thyroiditis?

Hypothyroidism is diminished thyroid function.  Your thyroid is one of the largest endocrine glands in the body. It is the "Adam's apple" on your neck and produces hormones, principally thyroxine (T4) and triiodothyronine (T3), that regulate the rate of metabolism and affect the growth and rate of function of many other systems in the body.

Your thyroid's function is generally measured by the amount of thyroid stimulating hormone (TSH) you produce.  If you are producing too much TSH, this is an indicator your thyroid isn't working properly, and your body is making more TSH to push it along.  The old laboratory standards and guidelines for normal TSH was between .5 and 5 mIU/L, but newer standards (established in 2002) are between .3 and 3.  For some reason not all doctors are sold on the new levels.  However, all the doctors I have spoken with (my allergist, two ob/gyns, and a reproductive endocrinologist) use the new standards of .3 to 3, while only one doctor -- my old endocrinologist -- uses the old standards.  I got pregnant as soon as my levels stabilized at 1.9, so I am a believer in the newer standards.

Doctor Joseph Mercala, D.O., who suffers from hypothyroidism, believes free T3 and free T4 levels are more accurate measures of thyroid hormone levels.  He says this: "The Free T3 and Free T4 levels represent the active hormones circulating in the blood. The typical thyroid tests: Total T4, T3 Uptake (and Free Thyroxine Index (FTI) are virtually worthless and should have been abandoned years ago. I believe that the Free T3 and Free T4 are not superior to TSH, but should be used in conjunction with TSH. My contention is that the reference range for TSH is inaccurate. TSH is quite a good screen and will in fact assess most cases of hypothyroidism if the new ranges are utilized. The value of Free T3 and Free T4 comes into play when one needs to diagnose secondary and tertiary hypothyroidism. These are cases of hypothyroidism due to pituitary or hypothalamic dysfunction. These are far less common than primary hypothyroidism, but nevertheless they do constitute a significant percentage of individuals."

That's the last I'll get into secondary or tertiary hypothyroidism, but at least now you know they exist.  I'm not sure how they relate to pregnancy, but it doesn't matter.  What's important is having the right tests done and finding out EXACTLY what is wrong, so you can begin proper treatment.  If you are healthy, your chances for miscarriage decrease.

Symptoms of hypothyroidism:  Low thyroid levels are associated with difficulties in conceiving and miscarriage, among many other things.  Symptoms include: dry skin, dry thinning hair, dry brittle nails, sensitivity to cold, puffy face, constipation, slow metabolism, weight gain despite low-cal diet, fatigue (complete devoid of energy), mind-in-a-fog, and depression-like symptoms.  I'm sure there are more symptoms I haven't listed here. 

Hashimoto's thyroiditis or Hashimoto's syndrome is when your thyroid produces antibodies that attack itself and diminish its function.  I make both, ATA and TPO antibodies (anti-thyroid antibodies and thyroidperoxidase antibodies).  Presence of these antibodies have a known association with increased risk of miscarriage and recurrent miscarriage, among other things.  My understanding is the increased risk is between 1 and 5 times.

I was diagnosed after having my blood tested for thyroid antibodies for chronic hives.  Chronic hives and allergies are another symptom of the thyroid antibodies, though less common.  Besides the symptoms previously listed, which I'd lived with to some degree my whole life, my principle symptom was sudden forgetfulness.  I've always been forgetful, but it became severely worse over a short period, and I realized something was wrong.  I couldn't make it through a simple conversation without forgetting what I was saying.  In the beginning, I chalked it up to stress, since I was getting married and planning a big wedding.  But my symptoms continued well after the wedding.  I'm actually glad I have chronic hives, or I may never have gone to the doctor and found out about my thyroid condition.  If you have the symptoms listed above, don't be like me and wait -- be proactive and seek out an endocrinologist!

Hypothyroidism, Hashimoto's, pregnancy and miscarriage

Miscarriage can occur for many different reasons.  So many, in fact, that doctors will tell you not to worry yourself over the cause.  The healthiest of women can miscarry.  Usually the problem is genetic; a fluke thing that affects the very core DNA of the fetus, resulting in replication errors which can't -- and shouldn't -- sustain life.  Nature's way of telling you something's wrong.  Well, if you've had a miscarriage, you've heard this a gazillion times.

Most of the time this is true.  But there are other factors, such as the aforementioned thyroid antibodies which attack the fetus (autoimmunity) and are associated with increased risk of recurrent miscarriage, between 1 and 5 times higher.  Also, TSH levels of 3 mIU/L or higher -- according to Joseph Mercola, D.O., 1.5 or higher! -- can indicate thyroid disease.  If you are tested and come out higher than 2, and you are having trouble conceiving, talk to your doctor about going on thyroid medication.  Don't be afraid to obtain 2nd or 3rd opinions.  Remember my original endo, who waited until I had a miscarriage before telling me she'd test my thyroid levels during my pregnancy, next time.

Unfortunately, if you are hypothyroid or have Hashimoto's, you can't stop worrying once you are pregnant.  A study in the New England Journal of Medicine (2) found that 85% of the hypothyroid women in their study needed an average 30% increase in Levothyroxine dosage during their FIRST TRIMESTER.  This is much, much earlier than originally thought.  The study concludes that women should get tested immediately upon becoming pregnant, and should increase their thyroid medication dosage by 30% upon becoming pregnant, since it takes 5 weeks to stabilize, and thyroid hormone levels were shown to diminish almost immediately in pregnancy. 

Additionally, the study showed women with untreated hypothyroidism may have children with lower IQ scores and other cognitive defects.

So, before you become pregnant, find an endocrinologist or perinatologist or ob/gyn who will agree to have your hormone levels checked early and often, throughout your pregnancy, including the 1st trimester.  Ideally, have yourself checked at least twice during each trimester, and just before getting pregnant to establish a baseline.  Have your thyroid stabilized at least 4 weeks prior to pregnancy, too.

Medication:  My original endocrinologist put me on levothyroxine, which is synthetic T4.  Doctors used to use dessicated whole thyroid, which is still on the market as Armour and other names.  While most doctors switched to the synthetic at one point, some are switching back to whole thyroid since they believe it has better results. 

And this quote from Dr. Joseph Mercola: "If one already has thyroid failure, then it is not possible to return the gland to normal and readers should seek a form of therapy that optimizes T3 levels. For the vast majority of patients levothyroxine (Synthroid) does not achieve this. I see many patients who have searched long and hard to find a physician who was willing to give them a thyroid replacement like Armour thyroid. It is my experience that once these individuals change their thyroid replacement to a natural thyroid product their quality of life soars."

Hopefully my new reproductive endocrinologist will answer the question of whole vs synthetic thyroid hormone supplements. Only 10 days until my appointment!


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Posted at 04:57 pm by lisachu
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