Help! Anyone know about Hypothyroidism?

[bostonsmama]

Any docs, nurses, or HT patients out there know about hypothyroidism? My GYN gave me a potiential diagnosis of hypothyroidism from the ultra high TSH (Thyroid Stimulating Hormone) levels (which were 7.065 uIU/ML vs normal 0.35-4.5) that they recorded from my last set of labs. Doc ordered a follow-up blood test of Free T4, which I'll do, but I'm cautious. I just did some research and it said that if there is excess iodine in the blood, this could cause elevation/decrease of TSH in the blood. And that very morning (about 2 hours before labs drawn) I had an iodine injection because of a CT Scan. The CT techs said it wouldn't interfere with the labs, but the lab techs said CTs don't know about that stuff, and that drawing from the same arm could skew the results, so that's what we did...but now I'm concerned my TSH levels might have been thrown off by the iodine IV I got. Can ANYONE point me in the right direction for where I can find the answer to this? I've done a prelim. search on internet with interesting results. Any docs/nurses care to chime in? I know we have so many.

I would be SOOOOOOOOOOOOOOOOOOOOOOOOOO greatful to anyone who can help. This have been such a rough time with a MC and TTC for over a year...now to hear that I might have hypothyroidism to blame for everything is both exciting (since there's finally a diagnosis and it's treatable), but also scary (as it's dangerous during pregnancy...can result in high MC rate, stillbirth, and low IQs in children after delivery). TIA.

[lablover]

Hi - I can't really help you about the impact of iodine to the tests, but just wanted to say that I am hypothyroid and have a happy, healthy one year old who seems to be fairly bright (of course that's his mama saying that!) I suffered through 2 years of infertility until this was found (my TSH was 31 and I had no other noticable symptoms at the time - looking back I was colder than normal and there were other small things that were probably due to my thyroid). Once I started on meds and my TSH was brought down to between 1 and 2 (which took a few months) I conceived within the month. I had absolutely no problems during my pregnancy. Afterwards was a different deal as postpartum my thyroid went wacky again - I went through a thyroiditis flare - and it took about 10 months to get back to normal. The risks you read about to the baby refer to untreated thyroid conditions - if you are treated sufficiently then the baby should be just fine. A few things I want to point out if you are in fact diagnosed as hypothyroid:

1. Your TSH should be between 1 and 2 in order to sustain a pregnancy. NOT 4 or 5 even though that is in the lab range.

2. I suggest the book Living Well with Hypothyroidism by Mary Shomon.

3. You will need to be tested frequently during pregnancy (at least every trimester) to make sure your levels stay normal. Most women will require a dosage increase (although I didn't).

4. I was really depressed when I found out I'd have to take a pill every day for the rest of my life, but now, it's really not a big deal.

5. You may want to go to about.thyroid.com - there is a lot of information on this site. There is also a message board which a lot of knowledgable people frequent - so hopefully someone can answer your question there.

Do you have any other symptoms? If you do have hypothyroidism it's very important to get your levels straightened out before you conceive - both for you and the baby. Let me know if you have any other questions.

[bostonsmama]

Thanks so much for sharing. From what the doctor told me, the course of treatment you explained sounded like it was in my future. This is the second time my labs came up with elevated TSH levels (last time it was 5.0 uIU/ML). In the last year, I've gone from a size 10 to a large size 12 (bordering on 14...but mostly around the midsection). I'm tired all the time, but I exercise (brisk walks) for 40 min four times/week. I can't sleep at night, but when I do, I sleep for 10 hours at a time. I'm cold all the time (funny, much like you). I never ovulated without help from my RE, and I recently MC'd. I'm guessing it was because of a shortened luteal stage/not enough progesterone to sustain it. I even read that MCs are more likely with hypothyroid patients because the pituitary gland/thryroid controlls prolactin and all sorts of other hormones in the body that affect ovulation/women's cycles. I'm really sad at what you said about TSH levels higher than 4 not being able to sustain a pregnancy. DH and I were REALLY hoping this time was a charm. I guess I just hope that it all works out...but I think you're right...this needs to get fixed so we afford the best chance of health for our future child.

And yes, didn't mean to insinuate that hypothyroid sufferers are all going to have low intelligence kids (as I forgot to add that those results came from mothers who were largely untreated/not treated enough). Taking a pill for the rest of my life won't bother me...I'd just prefer to be healthy and LIVE. Once again, thanks for the wealth of information.

[ErinMC]

Hi! I don't know anything about the iodine connection, but there are some sites that might help you. Here is one I've used a lot:
http://thyroid.about.com/cs/pregnantfertility/

Their pregnancy and fertility section:
http://thyroid.about.com/cs/pregnantfertility/

If you do have HT, I don't think you have anything to worry about. I'm hypothyroid and despite having my blood drawn more frequently during my pregnancy to monitor my TSH, it really didn't affect the baby. I think the dangers you hear about refer to UNTREATED hypothyroidism during pregnancy. Both my OB and regular doctor assured me that as long as I was tested regularly and kept my TSH low (I had to change meds dosage a few times), the baby and I would be fine.

It did take me about 8-9 months to conceive, which my OB said might have been related to my thyroid condition. But we don't know for sure.

One thing to remember is that if the future tests confirm that you are hypothyroid, your baby will show high TSH levels right after birth. No one told me this and when my pediatrician called me when DS was 4 days old to tell me that there were "problems" with his newborn screening tests, I freaked out. He had to be retested, but he was fine: his thyroid levels were just spiked due to receiving my thyorid meds secondhand. By the time he was re-tested at one week old, his levels were fine.

Hope this helps! Feel free to email/PM me if you have any other questions.

[brubeck]

I don't have it myself but my MIL and DH do. MIL got diagnosed at age 16 and had my DH (who is VERY smart BTW :) ) and also got pg a couple of other times (and had abortions, but that's another story). DH was diagnosed last year (in his 30s).

Both of them have to be on medication every day but basically that's it: they take a pill every day. FWIW, DH's doctor told him to make sure that his daily multivitamin did NOT have iodine in it, but that's all I know about the iodine connection.

Wishing the best for you in this situation!

[Jen in Chicago]

I have was diagnosed a few years ago. My Mom, Grandmother and Aunt have it too. With one little pill a day we are just find and dandy. I have a DS we love dearly, and did not have any problems getting pregnant.

[marit]

I have had HT for the last 4-5 years. Once they figured out the dose of medicine that works for you it's a no brainer. You have to take a pill every day (very commonly used and safe, also in pregnancy and while BFeeding), and check your blood levels every 6 months to see you're still stable (more often in pregnancy). I really don't think about it now.

Now, just for your information, a TSH level of about 7 is not considered normal but it is still very very low for a HT case. Just for comparison my first test was 10, and they still wouldn't give you the medicine unless you have a specific symptom (such as constipation, weight gain, sleepiness or problems to conceive). After I had Maya, I had a really bad HT, then my TSH was in the 200 zone, now that is serious (so you see, TSH of 7 isn't the worst...).

If you turn out to have HT, I would look at the bright side. I mean if you have a problem, now they found it and it means it can be treated! If it gave you problems to conceive, things might get easier, if you had any of the other symptoms I mentioned, you'll see an improvement there too. A lot of people loose weight (only if the weight gain was connected to HT) and feel more energized.

HTH,
Marit

[lablover]

One thing - I don't know that TSH levels of 4 or higher will DEFINITELY not sustain a pregnancy....I just wanted you to be sure that the doctor that treats you has a goal of getting your TSH down to around 1 or 2. Thankfully my doctors followed that rule. Some doctors are clueless and think that as long as you are in the range then you are fine - most people will continue to have symptoms when their TSH the upper part of the range. Also, your Free T4 should be at least midrange to alleviate symptoms. (And your Free T3, if you can manage to get it - a lot of doctors won't test that though). Sounds like you will feel much better after you get a little thyroid hormone!

[laretce6]

Hi,

Just wanted to weigh in that I also have hypothyroidism (and type I diabetes) and I have a healthy happy 2 month old. Other than having to have my meds adjusted early in my pregnancy and extra bloodwork it had pretty much no noticeable effect on anything. I've had issues with my thyroid since I was a preteen and the only time it's been difficult to control is when I was going through puberty.
I'd second the recommendation to dheck out the book Living Well with Hypothyroidism.

Good Luck!

Caroline
Mama to Eleanor Katherine 8.2.04

[bostonsmama]

Thank you to everyone who chimed in. I was in tears after reading some of the online information on hypothyroidism. Of course, medical websites have to put worse case scenarios, but it was just so disheartening. I think this stress was compounded by the fact that today was my "peak" day and we're now waiting to see a baseline temperature shift (to confirm ovulation...and another 2 weeks of waiting to find out if it worked). I don't know, I've been fighting infertility for the past year, but now that it (might) have a name, it's scary and new....when, in fact, it's nothing new at all.

Anyhow, the stress reached such a peak that I had to call up my mother and bleed out my soul. We went out for tea tonight so I could relax a little and talk through my options. When I came back, I read over all the posts again, and I felt so much more reassured. I know that everyone's body is different, but I'm heartened by the fact that all of you are leading happy, normal-ish lives (with CHILDREN!! :) ).....so thanks to everyone for adding your 2 cents. I'm going in early tomorrow morning to get the free T4 done. I think I'll have the results by Thursday (they're putting a rush in on this one). And yes, it feels pretty good to know that some of you had levels 5-25 times higher than my own, and you still conceived. Thanks again.

[alkagift]

Don't worry! I was hyper-thryoid for years prior to my first conception and hyPO after my son's birth. Annoying, but I'll tell you that pregnancy does all kinds of things to your endocrine system and everything went into remission during my pregnancy and it was fine. I'm NOT saying that will happen to you, but I just wanted you to know that lots of things are impacted by and impact your endocrine system.

I very strongly recommend seeing an endocrinologist. Soon, especially when your t4 results come back. I found that my OB would look at the "chart" printed on the results from the lab company and that would be the end of the results interpretation (umm...I can read as well as you, I need more info than that). Endos work in this area and have seen lots of women in various stages of fertility so ask your OB for a recommendation of someone he/she has worked with before--it helps when they've had a good partner.

Allison
Mommy to Matthew Clayton, 5/19/03

[Misha412]

Like PP Caroline, I was dx'd w/ thyroid disease when I was very young. Back then, I was hyperthyroid and I was such a mess that I had part of my thyroid removed when I turned 14. Unfortunately, the surgeon took out too much and I became HYPOthyroid at that point. The next 15 years I made the mistake of letting PCPs treat my disease and my meds were all over the place. I also had three MCs and an ectopic pregnancy, though no one ever definitively said that the fertility problems were related to my thyroid problems.

Finally, at 30 years old, I found a brilliant endocrinologist who has provided me with amazing care. He stabilized my meds, and a few years later, I got pregnant on the first try. Of note, my progesterin levels were low (which may have been related to my thyroid) but this was easily remedied by taking Prometrium during my first trimester. With Dr. A watching me closely, I had an easy pregnancy and delivered a healthy normal baby who is extremely bright and a fast learner. He also tested negative for thyroid abnormalities at birth. I went on to breastfeed while taking my thyroid meds and we never had any problems.

The best advice I can give is this:

1) Find an endocrinologist who specializes in thyroid disorders. Most PCPs just don't know enough about the thyroid to treat you properly.

2) Take your meds every day at the same time and NEVER take them within 6 hours of a vitamin or calcium supplement. These supplements can prevent your body from fully absorbing your thyroid hormone. For the same reason, you should also avoid eating/drinking too many soy products.

2) Have your hormone levels tested once you level off with your thyroid replacement meds. You may need Prometrium like I did to help thicken your uterine lining and give the embryo a good place to implant.

3) Once you get pregnant allow yourself to be very closely monitored and make sure your OB-GYN knows you have hypothyroidism.

4) After you have your baby watch yourself closely for sighs of PPD.
The thyroid plays a huge role in your emotional hormone level and for this reason many new hypothyroid moms are at high risk for PPD and bad cases of baby blues.

Good luck -- it's not an easy road, but not the roughest one either.
I will keep you in my thoughts. Please feel free to PM me if you have any other questions or just need some support.

I'm rooting for you!

[bostonsmama]

I went in this morning to get my labs drawn. While there, I had a chance to speak to my GP. I showed him my basal temp/fluid charts for the past few months, and he said based on my pattern of low temperatures (ranging between 97.2 and 96.7), extended period of fertile cervical fluid, lack of definite thermal shift and long cycles with heavy menses at the end, that it is good confirmation that I have a hypothyroid condition. Based on that information, he said it's unlikely that I ovulated at all. I am so shocked. I was soooo sure that this one was it. Now I have to wait again....for the synthroid to kick in, for my body to cycle out, for my temps to reach their peak, etc...man.....I think I need a stiff drink.

[Torey]

Don't worry things will work out. Honestly you will feel much better when your thyroid condition gets stabilized. I was diagnoised with hypothyroid at age 18. It took a little while to get everything worked out, but once my dose was right I felt great. I got pregnant without any problems and they actually lowered my dose throughout my pregnancy.

Don't let the low temps get you down. My temps are ALWAYS low. Many doctors say that 98.6 really isn't a good baseline for most people (it's just a random average they got somewhere). My temp is always in your range (and I do ovulate). I would get a good book on Natural Family Planning (or that book Taking Charge of Your Fertility). It will give you much more info about tracking your cycle and ways to increase fertile mucus (vitamins, etc.).

Finally, be aware that not everyone responds to synthroid medication. I take a thyroid replacement called Armor Thyroid. It is actually made from pig thyroid or something like that. I would recommend asking your doctor about it. I have had many doctors who regularly prescribe it for their patients (although some doctors have never even heard of it) I think that it mimics your natural thyroid more effectively than the chemical one (synthroid). It is a prescription medication (not something you get at a natural food store or anything). If you have any questions please feel free to email me.

[dogmom]

I just wanted to echo the suggestion that you get an endocrinologist. In fact, I would call find someone that is used to working with women in the childbearing years.

Also, I just wanted to point out not to be worried about the finding of low IQ in children of mothers with thyroid problems. It was a small study (124). Average IQ was 107. The IQ in children of mothers that WERE NOT treated for their thyroid condition was only 7 points lower, and there was NO DIFFERENCE if the mother was treated. Just so you have one less thing to worry about.

http://www.nih.gov/news/pr/aug99/nichd-18.htm

Jeanne
Mom to Harvey
1/16/03

[bostonsmama]

Thanks for the recommendations. I'll take your suggestions into my RE when I see her Friday (boy, isn't it crazy having 3 doctors all at the same time...you never remember who you told what!), as she's trying to treat the infertility as wholistically as possible (meaning fixing the underlying cause, not masking it with Clomid). Well, only time will tell what happens with the diagnosis and treatment...

[californiagirl]

My best friend took her temp chart to her OB who said she'd never seen a chart like that in somebody who was ovulating, but they'd check her progesterone levels on the appropriate day by the chart just in case, what the hey. When the progesterone levels came back, they called her to say, well, she wasn't low progesterone, and did she have any pregnancy tests handy because boy, those were *remarkably* high levels in somebody who wasn't pregnant. The OB will never be able to say that again, because the baby's due Nov. 12.
I'm sure they're right more often than they're wrong, but they're not guaranteed.

[bostonsmama]

Hmmm...maybe I should skip the stiff drink.....just in case.

Thanks for the tip!

[starrynight]

I'm sorry :(. Good luck with the meds {{{hugs}}}