I am a mother of two beautiful boys, both born with Congenital Hypothyroidism. I was diagnosed with Hypothyroidism during my late twenties and later learned that it was Hashimoto's Thyroiditis. My husband was diagnosed with Grave's Disease (hyperthyroidism) shortly before our oldest son was born. All four of us take daily thyroid hormone replacement medication (Levothyroxine). I remember the day we received the phone call diagnosing my oldest son with Congenital Hypothyroidism. I felt so overwhelmed. I didn't want anything to be wrong with my precious newborn. I also felt very alone, since I didn't know anyone else who had a child with Congenital Hypothyroidism. For parents dealing with that initial diagnosis, please know that you are not alone and that it is going to be okay. I am not a medical professional or a scientist, but I am a Mom that deals with thyroid disease every day. I hope you enjoy reading my blog!

-by Blythe Clifford

Congenital Hypothyroidism Blog

Sat, 05 Jan 2013 21:37:43 -0500

Out of the mouth of babes

That’s me with my oldest at Disney when he was 3 years old and then again just recently. He’s 7 now. Those 4 years certainly flew by - way faster than he drove me around that race track a few weeks ago. He’s turned into quite the amazing kid - wise beyond his years. I recently interviewed him about what it’s like to have congenital hypothyroidism and here’s what he had to say:

What does congenital hypothyroidism mean?

It means that your thyroid doesn’t work that well. You don’t want to have it. You have to take a pill every morning.

Where is your thyroid?

In your throat and it’s shaped like a butterfly.

How did you learn to take a pill?

My wonderful mom and dad just told me I had to. I said I don’t want to take this and my parents said I had to or I would die. So, I learned how to do it.

Um, did we really tell you that you would die if you didn’t take your pill?

No. (sheepish grin) I did learn how to swallow the pill, though. I just figured it out.

Do you know anyone else with congenital hypothyroidism?

Yes, my brother. My mom and my dad have thyroid problems too.

What is the worst thing about having congenital hypothyroidism?

You have to wait at least 30 minutes after you take your pill to eat breakfast. Sometimes that’s really hard.

What’s the best about having congenital hypothyroidism?

That it makes you really unique.

What do you tell your brother about hypothyroidism? How do you help him?

I say it’s okay, I will help you. Sometimes I can get him to swallow his pill and not chew it.

What about the blood draws?

Blood draws are fine. But I would suggest you let your kid sit in your lap in the chair, so they don’t scream because that makes the blood come out slower. I try to think of things that make me happy. If there’s a clock, I usually look at it.

What about your appointments with your endocrinologist?

They are pretty good. They are not scary, but sometimes they do things that tickle. They are totally fine. They do everything right. They interview parents about are we having any problems.

Is there anything that scares you about hypothyroidism?

Yes. Sometimes you don’t know what’s going on with your body. Sometimes you don’t feel like yourself.

What do you do when you don’t feel like yourself?

Sometimes I tell you guys that I feel off. Sometimes I just remind myself that we are all different.

What would you tell other parents who just found out that their child has congenital hypothyroidism?

Just calm down and relax. Tell your kids that they will be okay. Tell your kids you will help them get better and that there is a kind of medicine you can take to get better.

What about kids who just found out they have hypothyroidism? What would you tell them?

They should call me, and I can explain it to them. I can tell them how I feel.

How do you feel?

I feel good, because my family is very unique.

Is there anything else you want people to know about this - about hypothyroidism?

Calm down.

Why do people need to calm down?

So they don’t overreact and get more sick and have more of a problem.

****

I am so grateful to my sweet boy for sharing his thoughts. I was most surprised (and pleased) to hear that having congenital hypothyroidism makes him feel unique. I was impressed by all the advice he gave, particularly that screaming during blood draws makes the blood come out slower (wonder if that’s really true?) and that we all just need to relax and stay calm. I was saddened to hear him talk about feeling off, but glad that he has learned to recognize and articulate that feeling. I hate that he hates taking a pill every day - that’s something I wasn’t as aware of because his younger brother is usually more vocal about his disdain for the daily meds. In general, though, his overall perspective is that this really isn’t that bad and it isn’t anything to stress out about. Parents of infants with congenital hypothyroidism, I hope this gives you some perspective. It definitely gets easier and it becomes part of their daily lives. I believe it makes them better advocates for themselves, because they learn so much earlier to listen to their bodies and to take an active role in their own health.

Adults with thyroid problems - sounds like we just need to calm down and don’t overreact - don’t want to end up with more of a problem!! :D

-By Blythe Clifford

Nov 11, 2013, 5:58 PM

Hair

(Photo Credit: Luke Bhothipiti - Photographer; Hair: Robson Spinelli, The Junction Bar & Salon; Makeup: Michelle Congleton, Models For Charity)

That’s me - with mighty big hair. As you can tell, I have red hair, well it’s really more strawberry blonde, but I’ve been classified as a redhead. I have the fair skin and freckles to go with it. As a child, I was often picked on and teased because of the color of my hair. I was called “coppertop”, “Clifford, the Big Red Dog” (yes, I have the unfortunate combination of having red hair and Clifford as my last name) and told “I’d rather be dead than red on the head”. Even as a teenager, I would hear things like “no offense, but I’d hate to have hair like that” – mostly centered around the fact that I didn’t tan like everyone else and my friends feeling sorry for me and my perpetual need for sunscreen. I was constantly counseled on what colors I should and shouldn’t wear for “hair like that”. I hated my hair color.

As I aged, though, I realized the power and thrill of being a redhead. I enjoy being the only redhead in a room full of bottle blondes and brunettes. I get compliments now and people telling me they wish they had my hair. Naturally, my hair is very much a part of my identity. When I am meeting someone that I haven’t met before, I usually describe myself by saying “I’ll be the tall redhead” and people usually find me with no problem. I delight in pictures my children draw of me using bright orange or red crayons to depict my hair.

It’s funny how things change. I am now quite honestly terrified of turning gray and of losing my hair - the same hair I wished I didn’t have when I was younger. I know it’s vain, but it’s the truth. Often, when the seasons change, I go through what I call a molting process where I seem to lose more hair than normal. But recently, I’ve been losing a lot of hair. Like handfuls. My normally thick hair now requires an extra twist of the ponytail holder, because my hair has become so thin. Each time I brush my hair, it seems like more falls out. My kids are even complaining about finding my hair all over the place. I’m not sure if it’s just my normal “molting” or if it’s because of my thyroid.

Hair loss can be a sign that your thyroid hormones are off – the same for dry, brittle hair and thinning eyebrows. There is a great article on the Women’s Health Network website about why thyroid imbalance causes hair loss. You can read it here:

http://www.womenshealthnetwork.com/thyroidhealth/thyroid-and-hair-loss.aspx?id=1&campaignno=hypothyroidism&adgroup=ag11Bhairloss&keywords=hypothyroidism+hair+loss&gclid=CK3p0eS61boCFc9QOgodzA0Avg

Thyroid guru, Mary Shomon, also writes about hair loss due to thyroid imbalance in a recent article published on About.Com. She states: “Hair loss can also result from being UNDERtreated...not being at the right TSH, or not taking the right drugs for you. An increasing number of doctors believe that a TSH of around 1 - 2 is optimal for most people to feel well and avoid having hypothyroid or hyperthyroid symptoms such as hair loss.” She also provides suggestions on alternative treatments, such as using primrose oil. I encourage you to read her informative article. (See http://thyroid.about.com/cs/hairloss/a/hairloss.htm).

It’s often hard to determine whether hair loss is normal and what the ultimate cause is. I encourage you, though, to keep track of all of your symptoms (even if you aren’t sure if they are relevant) and discuss them with your doctor. You are your own best advocate. I keep telling myself that my hair loss hasn’t reached the point where I need to be overly concerned, but I need to take my own advice. I need to talk to my Doctor about it, not just because of my vanity, but to be sure it’s not a sign of another underlying health issue. In the grand scheme of life, hair may seem like a silly thing to worry over, but sometimes those things “little” things like changes in hair and skin can be your body’s way of telling you something’s up. Don’t take chances and share those little things with your doctors - it could help your doctor find something big.

-By Blythe Clifford

Nov 8, 2013, 11:21 AM

Travel Tips

My family and I are just home from a family trip. It was a wonderful trip. Traveling with kids, though, is always an adventure. I have flown a lot with my kids and wanted to share my tips for packing and flying with children, especially those with health issues.

1) Make a list and check it twice! I have saved all of my packing lists on the computer, so that I can edit and reuse easily.

2) Check all of your medications a week before your trip. Count the pills to be sure you have enough of each medication to last through your vacation and a few extra days (in the event of flight delays or other travel issues). If your insurance provider won’t allow you to refill a prescription early to ensure you have enough pills, check with your doctor to see if you can get samples of your medication.

3) Pack your medication in your carry on so that you will have it with you in the event your checked baggage is lost or delayed. This includes syringes and anything else you use to administer the medication. We used syringes with our children when they were infants, so we always packed extra syringes (just in case one broke while we were on vacation).

4) Make sure you have contact information for your doctors (pediatrician, pediatric endocrinologist, etc.) and your pharmacist. Make sure you have your insurance card as well. We once flew out of state on vacation without our son’s albuterol (rookie mistake). We ended up having to call our pediatrician and have a prescription called into a local pharmacy. If you are traveling out of the country, I’d advise you to leave copies of this information with a friend or family member. Our oldest son became quite ill when we were in Belgium, and my mother ended up doing most of the talking to our pediatrician for us. We’d call her and she’d call the Dr and then relay the information (because of the time difference and our pediatrician’s inability to make international calls, etc.). It went more smoothly with her having all the information ahead of time (Drs name, phone number, and so on).

5) Continue to administer your child’s medication daily. For us, this has only been an issue when we changed time zones. We opted not to give the medication at the same time our son normally took the medication, but adjusted and gave him the medication each morning. We felt that was the best way to remember to give him the meds. If we had waited until later in the day (when it was morning on our normal schedule), we probably would have forgotten it.

Surviving flights with children aged 3 and under:

1) Bring drinks and snacks. You can fill bottles, sippy cups and water bottles after you get through security. It’s nice for them to have the cups they are used to. As for snacks, we go with things that are easy for them to handle on their own (bags of Goldfish, lollipops, etc.). We also try to go for a few things they don’t usually get so that it’s more of a treat.

2) Prepare for ear pain during take-off and landing. For babies, it’s best to offer bottle or breast during take-off and landing. You can also use a pacifier or offer a sippy cup..anything that will encourage them to swallow to help their ears pop. If your child is old enough to chew gum, that can help as well.

3) Clothes and diapers. Be sure you pack a change of clothes for your child and enough diapers to last through even the longest delayed flight. I also usually bring an extra shirt for myself…the one time I didn’t was the one time I was vomited on during a flight.

4) Bring your stroller. I prefer sturdy umbrella strollers that will fit through the x-ray machines at security. Being able to maneuver through the airport with your child contained is very helpful. I have a MacLaren Volo that has been all over the US and cobblestone streets in Europe and it still works. It weighs 8 lbs (w/o child) and folds with one hand.

5) Bring toys, DVDS, and other distractions. I usually bring our iPad loaded with a few new games and then a few dollar store trinkets for the kids to have during the flight. Before iPads, we just used portable DVD players.

6) Remain calm – especially if you are traveling alone with your kids. Kids are very perceptive and if they think you are uptight, they will act (or react) accordingly. If your child cries or throws a tantrum on the airplane, relax. Everyone has been there and done that.

A note about car seats. I have traveled every way possible with car seats. I have brought them onto the airplane, I have checked them with my luggage and I have rented them from car rental places. The safest way to travel with children on the airplane is to place them in their car seat. If you have a lap child, then obviously that won’t work for you. Only when I have traveled with my husband or another relative that has been able to help carry the car seats have I brought the seats onto the plane. It’s actually quite nice because it boosts them up high enough so they can see out of the window and helps restrain them. I have also checked them – in that case I recommend buying or borrowing a car seat bag to help protect the seat, but you can also bag them at the airport or wrap them in a large trash bag (yes, I’ve done that too). I would not recommend renting a car seat, because you can’t guarantee that the seat hasn’t been in an accident and there’s the whole germ factor too.

So, those are my travel tips! I hope readers will share their tips as well! Safe Travels!

-Blythe Clifford

Nov 4, 2013, 7:54 PM

Newborn Screening

When people find out that my children have congenital hypothyroidism, they often ask me how I found out. I explain that my children’s newborn screen results revealed that they had very high TSH levels. People often admit that they didn’t know there was mandatory newborn screening in the US, and that they didn’t know what tests were conducted as part of the newborn screen. I have to be honest that before my oldest son was diagnosed, I didn’t know about it either. I recalled that we consented to various tests and that his heel was pricked, but I couldn’t have told you what they were looking for at the time.

2013 marks the 50^th year of newborn screening in the US. Screens are conducted for congenital hypothyroidism (CH) and phenylketonuria (PKU), as well as many other disorders and diseases. The NIH website has a full list of disorders that are screened for as part of the newborn screening tests: (http://www.nlm.nih.gov/medlineplus/ency/article/007257.htm). The CDC website is also informative (http://www.cdc.gov/features/newbornscreening50years/).

What difference does newborn screening make? Newborn screening saves children’s lives. Without newborn screening, we may not have known about our children’s condition until it was too late. Untreated hypothyroidism can result in severe mental retardation and severe growth retardation. However, with medication, most children grow and develop normally. So for us, the newborn screen changed our lives and our children’s lives for the better. I feel very lucky to live in a country where newborn screening programs are in place. I know that because of this test, my children were diagnosed early, are being treated and will live normal lives.

Interestingly, bills were introduced in the US House and Senate this year regarding newborn screening. Representative Lucille Roybal-Allred (D-CA), along with Representative Mike Simpson (R-ID), introduced the Newborn Screening Saves Lives Reauthorization Act on March 20, 2013, with Senator Kay Hagan (D-NC) and Senator Orrin Hatch (R-UT) introducing its counterpart in the Senate on August 1, 2013. (See http://www.aacc.org/publications/cln/2013/august/Pages/Newborn-Screening.aspx#).

The legislation would reauthorize federal programs that assists states with improving their newborn screening programs (see http://www.kayhagan.com/news/wway-sen-kay-hagan-holds-hearing-show-importance-newborn-screenings/ and if you have time, watch the video about how newborn screens save lives). Both bills are currently in committee. You can use www.govtrack.us to track the status of these bills. I will be tracking them and will share any updates I hear. If you are interested in this bill and live in the US, contact your legislators. March of Dimes is also a good resource on this matter: http://www.marchofdimes.com/baby/newborn-screening.aspx

Many countries around the world have newborn screening programs. Sadly, though, some countries still don’t have newborn screening. (See The Changing Moral Focus of Newborn Screening: An Ethical Analysis by the President’s Council on Bioethics Appendix Newborn Screening: An International Survey by Joseph A. Raho, Research Analyst athttp://bioethics.georgetown.edu/pcbe/reports/newborn_screening/the%20changing%20moral%20focus%20of%20newborn%20screening%20-%20appendix%20-%20joseph%20raho.pdf). The most difficult conversations I’ve had with other moms of children with congenital hypothyroidism are those with mothers who live in countries where their children were not screened at birth. Their children were diagnosed after 6 months of age and after they already showed significant physical and mental delays. It was gut-wrenching to hear all that these children were going through, just because they were not diagnosed at birth by a simple heel stick. I cannot imagine the hurt and anger I would feel if I were in their shoes.

The good news is that more and more countries are implementing newborn screening programs. In April of 2012, Saving Babies Through Screening Foundation announced a partnership with World Solutions Against Infectious Diseases regarding worldwide advocacy of newborn screening. (See http://www.prnewswire.com/news-releases/leading-newborn-screening-organization-announces-partnership-to-support-advocacy-on-global-level-149481065.html and see http://www.savebabies.org/index.html). If you are interested in advocacy of newborn screening worldwide, it seems as though Saving Babies Through Screening Foundation would be a good start.

If you are pregnant, read up on newborn screening. Ask your doctor for a copy of the results from your child’s newborn screening. You are allowed to have the results of any medical test performed on your child. Make sure to go over any abnormal results or questions you have with your doctor.

Newborn screening may not mean much for some folks. For those of us whose children were saved by newborn screening, it means the world. I feel a renewed desire to talk about newborn screening and a renewed desire to tell this story, so that everyone can learn about the value and importance of newborn screening and so that other babies can also be saved.

-By Blythe Clifford

Oct 27, 2013, 6:43 AM

My Journey

That is a picture of me climbing at Joshua Tree in CA. Climbing is something that both thrills me and terrifies me. Overcoming my fear of heights to be able to do climbs like that was quite a feat and quite the journey. Similarly, my journey with thyroid disease has been an adventure.

I have shared a lot about how my children were diagnosed, but I haven’t talked much about my journey with thyroid disease. I’ve heard some people say that we should call it a disorder, but to me, it feels like disease is the right word. Lots of folks ask me what my symptoms were and what led to my diagnosis. The truth is I didn’t have any symptoms – at least none that I had really been paying attention to. I was in my twenties, and my husband and I were trying to conceive our first child. My gynecologist had advised that it could take up to a year of “trying” to conceive. Well, after significant time passed, I still wasn’t pregnant.

I went back to my gynecologist for advice. She suggested that I have some blood work done to test a few things. I agreed to it, and went back in to receive the update. At that appointment, I was informed that I had hypothyroidism. My first thought was “what the heck is that?” I’d never heard of it. My gynecologist explained it to me and then asked if I ever felt over tired, depressed, felt cold, had dry skin or hair loss. I paused as I thought through all of those things. Well, yes, I said, but my Mom has many of those same things, and I just thought it was normal female stuff (of course, we later learned that my mom has hypothyroidism as well – thanks to my being diagnosed and my insistence that she get checked). “Cold hands, warm heart” everyone had always said. I recall my gynecologist looking at me incredulously. She said “being in your twenties and having hair loss isn’t normal”. I was never one to sit around and lament any particular health issue, so I shrugged it off. She cautioned me, though, to pay attention to my symptoms and wrote a prescription for Synthroid (or perhaps it was Levothyroxine). I am not certain what I was taking at that time, because I was more interested in getting pregnant. I wasn’t one for taking medication I didn’t need so I asked my gynecologist what would happen if I didn’t take the medication. She said lots of bad stuff could happen including my heart could stop working. That was enough to convince me to take it, and from there, my gynecologist monitored my thyroid levels. I spoke with a friend who confessed that she too had hypothyroidism and took Synthroid and that she never knew how bad she felt until she realized how good she felt while regulated on the medication. I had a similar experience, and I thought for sure this was the fix. I thought for sure I would get pregnant.

Eventually, I did get pregnant, but it took 2 years. I don’t think I’ll ever know how much being hypothyroid prior to getting pregnant affected my ability to conceive. I still wonder why my thyroid levels weren’t checked when I said I was going to start trying to get pregnanct. But, hallelujah, I was pregnant at last.

I had a normal pregnancy with no complications, except for one thing. That one thing would haunt me for years. My OB checked my thyroid levels regularly throughout my pregnancy. At one visit, we were going over my labs and my OB decided to look back at the labs from the previous month. It appeared that I had been hypothyroid and nobody had caught it when they reviewed the labs (or perhaps the labs weren’t even reviewed). My dose was adjusted, but I was very concerned about my baby’s health during the time that I was hypothyroid. My OB assured me that it was not significant enough to worry about. That was an okay response until my son was born and diagnosed with congenital hypothyroidism.

My first thought was that his hypothyroidism had been caused by my being hypothyroid during my pregnancy. I was consumed with these thoughts and guilty feelings, but finally my son’s pediatric endocrinologist said that it was such a brief period that it probably did not cause his congenital hypothyroidism. I felt better, but it still bothered me for a long time. Honestly, it bothered me until my second child was born and diagnosed with congenital hypothyroidism. I was extremely well controlled during my second pregnancy because by then, I had been referred to an endocrinologist and she monitored me very closely. I had been sent to her sometime after my oldest was born because my OB didn’t want to monitor and treat my hypothyroidism. I was sort of miffed at the time, but I now know what a blessing it was to be sent to a specialist. Anyway, by the time my second son was born and diagnosed, my husband had already suffered through Graves Disease, and we knew that it was very likely any future children would have some type of thyroid disease. I think it lessened my concern about what had happened during my first pregnancy.

So, at what point did I realize I had Hashimoto’s? Well, my endocrinologist wanted an ultrasound of my thyroid done because none of my other doctors had ever ordered one. She also wanted more blood work done including checking for the antibodies that would show whether I had Hashimoto’s. I realized right away that she was a good endocrinologist. The results came back and the antibodies didn’t show up in my blood work, but my thyroid ultrasound revealed a thyroid gland that looked like it was a “Hashimoto’s” thyroid. My endocrinologist said that somewhere around 20% of people with Hashimoto’s don’t test positive for the disease based on the antibody test alone. I asked her the difference between this and regular hypothyroidism, and she explained that Hashimoto’s was an autoimmune disease and that I could be more likely to develop other auto-immune disorders. I recall thinking “whatever” and leaving the office. I was well controlled on Synthroid and felt fine.

That feeling of being fine didn’t last that long. After my second son was born, I struggled with many health issues. I had a kidney stone that had to be surgically removed, and then two months later had my gall bladder removed because it was chock full of stones. Four months later, I landed back in the hospital with another kidney stone. I continued to struggle with various health issues and was eventually tested for Cushings, which turned out negative. I struggled with hypothyroidism symptoms and was prescribed Cytomel (which is T3) in addition to the Levothyroxine to see if that helped better control my symptoms. Synthroid and Levothyroxine are only T4. Often, hypothyroid sufferers need both T4 and T3 to feel whole or “normal”. Because I had started the Cytomel, my endocrinologist wanted me back for a check-up sooner rather than later (see I told you she was a good doctor). She and I talked about the fact that she was certain I had Hashimoto’s, and we discussed the fact that I have Raynaud’s Syndrome. She suggested that when I come back for my next appointment, I should have an auto-immune work up done. I agreed that it seemed like a good plan, but I wasn’t totally honest with her or myself about everything that I should have said in that moment. I don’t have a good explanation for why. I’m good at advocating for everyone else, but perhaps not so great at advocating for myself.

Fast forward a month. I went for my annual physical with my internist. She was reviewing my entire health history (she is a very thorough doctor). She asked me why I wasn’t running anymore, and I explained that I had arthritis in my knee and toe. She pointed out that my chart showed nothing but chronic sinus infections. At another point in the discussion, I told her that my endocrinologist had asked about my Raynaud’s flare ups. It wasn’t long before she started questioning me and pushed me to be honest about all that was going on. It was a pivotal moment for me. She asked me whether I’d had rashes and whether I felt any other joint pain and many other questions. I told her I’d had rashes, but that I was a redhead and it came with the territory. She seemed skeptical. I realized that I had not been honest with myself or with anyone else about how terrible I had been feeling. I didn’t want to complain, because I felt as if I’d put my family through enough with the chronic health issues I’d faced over the last 2 years and felt as though everyone was tired of hearing what was wrong with Blythe today.

After a while, I began to confess all of the symptoms I had experienced, including the fact that I ached so badly that day I could barely sit on the exam table long enough to complete the physical. She sent me the next day for various auto-immune testing. The blood work came back positive for Sjogrens Syndrome – another thing I’d never heard of – but nearly all the symptoms on the list match up with what I’ve been enduring. I’m in the process of researching and learning more about it, because that’s how I make peace with every major issue I’m ever confronted with. I research the hell out of it. I am being referred to a rheumatologist for further testing and to rule out other auto-immune diseases. I feel good about the care I’ve received thus far. I’ve learned a lesson about the importance of being honest with my doctors and not ignoring symptoms. I’ve learned the value of persistent and thorough doctors, particularly internists who can see the big picture instead of just pieces.

So, what Hashimoto’s has meant for me is that it was a flag that was being waved – only to be noticed by the best and most attuned doctors. For those that think hypothyroidism is just a simple thing that is cured by simply taking a pill, you are wrong. Thyroid disease is much, much more than that. It affects every single day of my life. For those of us with auto-immune “versions” of thyroid disease, it’s simply one piece of a complicated puzzle. However, were it not for my thyroid disease, I’m not sure how long the other issues would have gone unnoticed and undiagnosed. So perhaps in some strange way, I’m thankful for it. I’m thankful that my experiences with hypothyroidism make me a better mom to my hypothyroid children. My journey with thyroid disease is a complicated one in many aspects, but I hope that by sharing it with you, I bring you some sense of peace and comfort and of not being alone if you are walking a similar journey or climbing a similar mountain.

By Blythe Clifford

Oct 25, 2013, 8:30 AM

Read the Fine Print

Have you taken time to read the prescribing information (“PI”) for your thyroid hormone replacement medication? If not, you should. Because as Francis Bacon said: “Knowledge is power”. You can ask your pharmacist for the information (if it doesn’t come with your medication) or you can find it online here: http://www.rxabbvie.com/pdf/synthroid.pdf

Recently, I spent some time reviewing the over 20 page PI for Synthroid (levothyroxine sodium tablets) and found many interesting things I wanted to share and discuss. Below I have highlighted the items that caught my attention. These are the things that interest me the most, but not a replacment for reading the PI for your medication and discussing it with your doctor.

FOOD DYES

The first thing that jumped out at me was what I found under the section labeled “Inactive Ingredients” – namely the food dyes. I know there is a lot of controversy over the effects of food dyes, but many parents, including myself, believe that food dyes need to be eliminated from our children’s diets. My children are now taking the generic form of Synthroid (Levothyroxine) and are on 50 mcg, so there is no dye in their current medications. I am taking an alternating dose of 112 mcg and 125 mcg, so there is D&C Red No.27 & 30 Aluminum Lake and FD&C Yellow No.6 Aluminum Lake, FD&C Red No.40 Aluminum Lake, FD&C Blue No.1 Aluminum Lake in mine. I’m guessing the food dyes were added so that we can tell the doses apart (particularly for those of us that are taking alternating doses). I think I’m smart enough to figure that out and would prefer that the food dyes be eliminated, as they don’t appear to have any medicinal qualities. If we really need the different colors, I wish they could add them on the bottle with different stickers or different colored lids. I plan to ask my endocrinologist and my pharmacist how much dye they think is in each pill so that I can better understand what different it really makes on our bodies. An article on Synthroid by Physician’s Desk Reference suggests taking 50 mcg to make your dose, if you are sensitive to dyes: http://www.pdrhealth.com/drugs/synthroid

SOY AND IRON

The next item that I found of interest in the Prescribing Information was under CLINICAL PHARMACOLOGY - Pharmacokinetics – Absorption. It states: “T4 absorption is increased by fasting, and decreased malabsorption syndromes and by certain foods such as soybean infant formula.” In other words, infant formula made from soy can interfere with your child’s absorption of the medication. Our pediatric endocrinologist mentioned this to us, but I am always shocked at the number of parents of children with congenital hypothyroidism that I talk with who have never heard this information. Here is an article in the US News about the importance of avoiding soy, not just in infants, but also in children and adults (see the discussion about soy milk). http://health.usnews.com/health-news/news/articles/2012/08/21/soy-formula-may-harm-babies-with-underactive-thyroid-report

Another thing I found under PRECAUTIONS – Information for Patients – item 13 was reference to iron and calcium supplements and antacids, which can decrease the absorption of levothyroxine sodium tablets. The PI states that the medicine “should not be administered within 4 hours of these agents”. So, parents of infants with congenital hypothyroidism need to talk to their doctors about infant formula with iron. Also, it was recommended that I give my boys iron drops when they were infants, because they were breast fed. I gave them the drops later in the day to avoid potential interference with the absorption of their medication. I also take my vitamins and minerals at lunch and dinner for the same reason.

To me, this highlights the importance of limiting soy intake, but also of having regular blood tests for infants and children so that any dietary changes that maybe affecting absorption will be caught and can be changed.

FASTING

Absorption of T4 is increased by fasting, which is why your doctor and pharmacists advise you to take your medication on an empty stomach and wait 30 minutes to an hour before eating breakfast. See the explanation under the section of the PI entitled “CLINICAL PHARMACOLOGY - Pharmacokinetics – Absorption”. This is also noted under “PRECAUTIONS – Information for Patients – Item 5”. Our pediatric endocrinologist advised us to give the kids their medication first thing in the morning and then wait 45 minutes to an hour (if we could) before letting our children eat. It was challenging when they were very young and woke up hungry. Now, they are content with cartoons until it’s time to eat – and an occasional stick of gum to assuage those hunger pains.

MONITOR CLOSELY

PRECAUTIONS - General: “Levothyroxine has a narrow therapeutic index. Regardless of the indication for use, careful dosage titration is necessary to avoid the consequences of over – or under-treatment. These consequences include, among others, effects on growth and development, cardiovascular function, bone metabolism, reproductive function, cognitive function, emotional state, gastrointestinal function, and on glucose and lipid metabolism.” Wikipedia defines therapeutic index as the comparison of the amount of a therapeutic agent that causes the therapeutic effect to the amount that causes death (in animal studies) or toxicity (in human studies). http://en.wikipedia.org/wiki/Therapeutic_index. Drugs with a narrow therapeutic index have little difference between toxic and therapeutic doses. So, with Synthroid having a narrow therapeutic index, it means that even if your dosage is off just a bit, it can throw off your TSH and cause side effects. (See http://www.synthroid.com/prescription/rightdose.aspx)

Under PRECAUTIONS – Congenital Hypothyroidism, it states: “During the first 2 weeks of Synthroid therapy, infants should be closely monitored for cardiac overload, arrhythmias, and aspiration from avid suckling. The patient should be monitored closely to avoid undertreatment or overtreatment.” The PI references the link between overtreatment and crainiosynostosis (skull closing too soon), which is something we went through with my youngest son (to read more about how what symptoms to watch for read this post http://www.thyroidmom.com/blog/the-hyper-hypo-roller-coast.html).

This matter is again addressed under PRECAUTIONS – Pediatrics. It states: “The recommended frequency of monitoring of TSH and total or free T4 in children is as follows: at 2 and 4 weeks after the initiation of treatment; every 1-2 months during the first year of life; every 2-3 months between 1 and 3 years of age; and every 3-12 months thereafter until growth is completed. More frequent intervals of monitoring may be necessary if poor compliance is suspected or abnormal values are obtained. It is recommended that TSH and T4 levels, and a physical examination, if indicated be performed 2 weeks after any change in SYNTHROID dosage.” I found this particularly interesting given a recent discussion among parents of children with congenital hypothyroidism from around the world in which many of us had been told varying information by our pediatric endocrinologists about how often thyroid levels need to be checked at each age. If there is any question or concern, take this information to your doctor and discuss it with them.

For children with acquired hypothyroidism (diagnosed when older than an infant), the PI again emphasizes close monitoring and discusses symptoms. It states: “Undertreatment may result in poor school performance due to impaired concentration and slowed mentation and in reduced adult height.” Poor school performance!! Slowed mentation!! Reduced adult height!! These can be the results of not treating hypothyroidism in children!! It is important to read and understand this information so you know what symptoms to be on the look-out for, particularly in children. The PI talks about catch-up growth, which is something we observed in both children, but more so with our oldest son.

Overall, these sections of the PI remind me of the importance of having thyroid levels closely monitored, especially in children with congenital hypothyroidism, hypothyroidism, or Hashimoto’s Thyroiditis.

DOSAGE

There is an entire section of the PI devoted to pediatric dosage (congenital or acquired). It talks about how to administer the medication and what dose to start newborns on, etc. It’s worth reading just for information.

TRIAL OFF MEDS

The PI suggests a trial off Synthroid for children who have not been diagnosed with “permanent hypothyroidism”, in other words children who have thyroid glands that appear to be normal but aren’t functioning. The PI states that this should not be done until after age 3. We did a trial off Synthroid with my oldest son, but test results after the 30 day trial period indicated high levels of TSH. So, he will be on Synthroid for the rest of his life. We have not done the trial off meds with my youngest son, but did have an ultrasound done confirming that he has a thyroid gland. Not sure that it’s worth having him do the trial off considering his brother, mother, father and grandmother all have thyroid disorders. If you have a child with hypothyroidism who is under the age of 3, you need to read this section of the PI as it outlines the testing protocols for the trial off the medication.

BONE MINERAL DENSITY

Particularly of interest to women would be the section entitled PRECAUTIONS – Effects on Bone Mineral Density. It states: “In women, long-term levothyroxine sodium therapy has been associated with increased bone resorption, thereby decreasing bone mineral density, especially in post-menopausal women on greater than replacement doses or in women who are receiving suppressive doses of levothyroxine sodium.” It goes on to say “Therefore, it is recommended that patients receiving levothyroxine sodium be given the minimum dose necessary to achieve the desired clinical and biochemical response.” My endocrinologist highlighted this to me, particularly because my mother has already been diagnosed with osteopenia (lower than normal bone mineral density). I was told to be sure that I’m getting enough calcium, but to also be sure that I’m taking it at least 4 hours AFTER taking Synthroid. I’m also wondering what effect Armour (natural thyroid hormone) has on bone density (something I’ll be asking and writing about soon). Being the mother of children with congenital hypothyroidism, I’m wondering about the effects on children. I’m guessing this hasn’t been studied yet, but I wonder about children who take Synthroid for their entire life and what effects Synthroid has on their bone mineral density. I need to discuss this more with my children’s pediatric endocrinologist. My boys love milk, so I think they are probably fine, but it bears asking if they need more than the daily average of calcium normally recommended for children.

OTHER CONGENITAL ABNORMALITIES

Another interesting find was about other congenital abnormalities. I’m not sure why it’s in the PI for Synthroid, but it states: “Infants with congenital hypothyroidism appear to be at increased risk for other congenital anomalies, with cardiovascular anomalies (pulmonary stenosis, atrial septal defect, and ventricular septal defect) being the most common association.” I have been dealing with congenital hypothyroidism for nearly 8 years now, and I have never heard of this association between congenital hypothyroidism and cardiovascular anomalies. Neither of my children have any other congenital defects, so perhaps this is why it was never brought up. I did find this interesting study in the International Journal of Pediatric Endocrinology discussing the link between congenital hypothyroidism and other congenital abnormalities: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2864451/#

DRUG INTERACTIONS

Make sure to read the section entitled “PRECAUTIONS – Drug Interactions”. You will find additional references to the troubles with Iron, Calcium and Antacids, but also many other things that may affect your ability to take Synthroid.

BLACK BOX WARNINGS

Finally – the black box warning – my husband used to be in pharmaceutical sales. He says it’s a big deal for a drug to have black box warning in their PI. Synthroid has one, and you should read it. It talks about how Synthroid should NOT be used for the treatment of obesity or for weight loss.

Well, that’s my summary of the most interesting things I found in the Prescribing Information for Synthroid. I hope it helps you. Again, knowledge is power. Just from re-reading this fine print, I’ve found many new things that I want to discuss with my endocrinologist and my children’s pediatric endocrinologist.

By Blythe Clifford

Oct 22, 2013, 9:06 PM

"Of all the sly, subtle problems..."

“Of all the sly, subtle problems that can affect physical or mental health, none is more common than thyroid gland disturbance. And none is more readily and inexpensively corrected. Yet none is more often untreated and even unsuspected…

One of the most common symptoms is fatigue. It can vary from relatively mild to severe. It may come on so slowly that a victim, feeling no sudden or precipitous decline in energy level, may come to accept fatigability as--for him--a virtually normal state.

I have seen many children who suffered from repeated colds followed by complications such as tonsillitis, sinusitis, ear and mastoid infections, who needed repeated antibiotic treatment and went right on getting new infections until their hypothyroidism was treated”.

Dr. Broda Barnes, Hypothyroidism: The Unsuspected Illness

I just came across this quote from Dr. Broda Barnes and had to share it with you. If you think something is wrong or something is off with you, your partner, your child, or any of your loved ones, tell them to get their thyroid levels checked! Have your TSH, T4 and FT4 levels checked and ask for the normal ranges for each level, so you can see for yourself how close to being out of the normal range the levels may be. If your child isn’t growing normally, ask their doctor to check their thyroid levels. If any results are border line, they should be re-checked periodically. I’m not a doctor, but I have seen so many people in my family struggle with thyroid disease, including myself, my children, my husband, my mother and my cousins. It’s a simple blood test that can give you many answers.

By Blythe Clifford

Oct 21, 2013, 3:37 PM

Congenital Hypothyroidism: A Dad's POV

I'm happy to introduce my husband, Mac, as my guest blogger today. I asked him to write about what things were like for him when our boys were infants and share his advice. Here's what he had to say:

My wife aka Thyroid Mom asked me to write about what I have learned as the Dad of 2 children with Congenital Hypothyroidism. I hope it can help other Dads out there, or at least let them know they are not alone.

First, let me start off by bragging because that's what we Dads have to do. That picture you see is of me holding my oldest son when he was an infant in the "football hold" as we call it in the US. It was his favorite way to be held, and I could always rock him to sleep this way. Isn't he a handsome baby? Okay, bragging done, now back to the task at hand:

1. This is real

If your child has to be born with a congenital disorder you could do a lot worse than Congenital Hypothyroidism (if you don’t believe me, wait until your first visit to a children’s hospital for an appointment), but this is still a very real and serious issue that your child will most likely deal with for the rest of his life. Pills will need to be crushed and administered, blood will be taken, you will begin to build a list of specialists pretty quickly, and you will wonder and worry about every little thing and if it is because of their thyroid. But do not despair, if you take this seriously and ensure that your child gets the care and treatment necessary, they won’t be much different than any other child (except for the fact they will be able to swallow pills a whole lot easier than most kids, and some adults).

2. Be emotionally supportive

Every parent wants their child to be born happy and healthy, but there’s a lot more to it than 10 fingers and 10 toes. When our oldest was born we didn’t even realize he had been tested for hypothyroidism, so when the call came in that there was concern and we needed to bring him in for more tests we were pretty concerned (read more on our experience at:http://www.thyroidmom.com/blog/the-phone-call.html).

My wife was emotional - she had just given birth and then found out there was something wrong with our infant. She was trying to heal from her c-section and multiple issues around that, plus learning how to nurse our son. She often questioned what she had done wrong during her pregnancy. That combined with the seemingly endless blood draws put her in a fragile state. I, on the other hand, immediately went into "fix it" mode. I felt like it was a problem I needed to fix. I didn't want her to be upset, and I didn't want there to be anything wrong. I know it may have not been the best approach at times, especially since it often clashed with my wife's thoughts and feelings.

In the end, though, I realized that she needed to be strong for our child, so that meant that on top of my new role as a father, I really had to step up the support as her partner. That meant at times not always trying to fix, but sometimes just listening to her, comforting her, and reassuring her (oh, and I changed a lot of diapers too!). Learning to be more supportive (in the right way) made us work better as a team - something necessary to raising children, especially those with health issues.

3. Be there for the blood draws

Blood draws can be quite the event, and one of the more stressful parts of learning to live with Congenital Hypothyroidism (or any type of thyroid disorder). I have spent most of my career on the road, which led to my wife having to do many of them on her own, and sometimes with 2 kids. My wife being left to handle it all by herself made it much more difficult for everyone and highlighted the importance of added support during blood draws. We learned from that with my first son and by the time we had our second son, we both were well aware that she needed another person there to help. Life and work will inevitably get in the way, so do your best, and if you can’t be there try to find someone else to help.

One of the biggest keys to your child having a positive experience is the parents’ state of mind during the process. Do whatever you can to ease Mom’s mind and help her relax, as she is probably going to be the one doing most of the soothing before, during, and after the stick when your children are infants. The phlebotomist may very likely need extra help holding the child during the draw, and you need to be ready to step in and help. For the older kids, don’t forget to always be ready with a special treat once you are done too - a little bribery goes a long way. For more tips on blood draws see: http://www.thyroidmom.com/blog/surviving-blood-draws.html

4. Go to the Pediatric Endocrinology appointments

Just like the blood draws, it is really hard to make it to all of the appointments with pediatric endocrinologists and pediatricians when you have work and have other children to handle. I just say do your best to be there or help find someone else in your circle of family and friends to be there. There is a lot of information gathered and shared at these appointments that you need to understand, and it can be tough for Mom to recall it all after the fact, especially if she is dealing with a screaming child while she is attempting to have a conversation with the doctor. Take a pen and paper for notes while talking to the doctor as well as jotting down your child’s current measurements, just in case there are growth concerns to track. Take turns walking out of the room with the baby/child while the other parent talks with the doctor. For more tips on endocrinology appointments check out: http://www.thyroidmom.com/blog/the-first-appointment.html

5. Take on daily tasks

Try to take on whatever responsibility you can around the daily routine, especially in terms of medication. In those groggy newborn months, it takes everyone to remember to administer the pill, and to make sure it gets down. We couldn’t get our first child to take his medicine until we pieced together a contraption out of a bottle nipple, a short piece of IV tubing, a syringe, and a whole lot of trial and error. He always got it down somehow, but just like with everything else, it was a team effort. I have heard of many kids that have no problem getting it down, BUT if they do, this is where you can put your need to “fix” things into action. Your child will never understand how hard you worked at making sure he gets his medicine, but whatever you can do will make sure he grows up happy and healthy.

Overall, being a great Dad means being a great husband first. Be supportive and harness your need to "fix" any perceived "problems" into researching information, helping with daily routines, etc. Finally, as my wife always says, never be afraid to reach out for help, support or advice. We are not alone in this journey!

-Mac Winslow, aka Thyroid Mom's Husband

So, that's it - Congenital Hypothyroidism from my husband's point of view. I have to say my favorite part was his realization that being supportive doesn't always involve fixing things. He is right, though, about the team approach. Once we learned to work more as a team, focusing on and capitalizing on each other's strengths (and for me that meant knowing when to ask for his help and then allowing him to step in), we became better parents!

By Blythe Clifford

Oct 15, 2013, 4:07 PM

Test Anxiety

Tests, tests and more tests! Sometimes I think I have test anxiety when it comes to thyroid hormone level testing. Ever wonder what time of day you should have your child’s thyroid levels tested? Well, I have!

I asked our pediatric endocrinologist whether we should give our kids their Synthroid (Levothyroxine, etc.) on the mornings that we are going for blood draws or wait until after the draw to administer the medication and whether we should go in the morning or the afternoon. Our doctor said there are schools of thought that believe there could be an issue with getting an accurate picture of the thyroid hormone levels if the draw is performed within an hour of administering thyroid hormone replacements. This runs counter, though, to the idea that Synthroid maintains a constant level of thyroid hormones in your body. So – the question remains – what time of day should you have thyroid tests done and should you dose prior to the draw?

There are articles and research on the topic – unfortunately I could not find any research on optimum test times and conditions for children with hypothyroidism – but the information I found is helpful and worth printing out and discussing with your pediatric endocrinologist. If you are an adult with hypothyroidism or have symptoms of hypothyroidism, you will want to read this as well.

In Mary Shomon’s article, Optimum Times and Conditions for Thyroid Blood Test, she quotes Dr. Richard Shames as saying: “I absolutely recommend that patients have any morning blood tests evaluating the thyroid before taking any thyroid medication. I have always told my patients to do it this way.”

(Source:http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtests.htm)

Tina Kaczor, ND, FABNO, writes in her article, Thyroid-stimulating Hormone Fluctuates With Time of Day, about a study in which thyroid hormone levels were assessed in the morning (8am-9am) and afternoon (2pm-4pm) for each participant. She states that: "This study implies that it is best for patients to have their blood drawn in the morning."

(Source:http://www.naturalmedicinejournal.com/article_content.asp?edition=1&section=3&article=386)

To avoid the potential for inaccurate or skewed results from dosing in the morning and then visiting the lab and to avoid skipping the dose, visiting the lab and then potentially forgetting to give the meds when we get home, we have been having the kids’ labs drawn in the afternoon (after having taken their meds early in the morning as usual). My husband and I go whenever we can get an appointment for our labs, without much regard to time of day. After reading this information, I feel that we should re-visit the topic with the kids’ pediatric endocrinologist and with our endocrinologists. The research seems to indicate that the most accurate results are produced in the mornings prior to administering Synthroid. The tough part for parents of children with congenital hypothyroidism is balancing this with the need to visit the lab at a good time for your child (avoiding nap, getting the phlebotomist that you want, not missing school, etc.).

Readers, please share what you have been told or heard about the best times and conditions for testing thyroid hormone levels.

By Blythe Clifford

Oct 14, 2013, 10:09 PM

The Hyper-Hypo Roller Coaster

Fasten your seatbelts and prepare for the ride of your life! The first year of life with a child who has congenital hypothyroidism is quite the roller coaster ride. The first thing we heard was my son had a high TSH, and we needed to start medication. Then, the next blood test revealed that his TSH was still too high and we had to increase his dose. Soon after, the next results showed that he was severely hyperthyroid (his was TSH too low). This went on for the entire first year of his life – back and forth - always having to adjust his dose and then repeat blood draws. After the first year, though, he seemed to level off and we had many more results where his thyroid levels were in the normal range.

When my second child was born and diagnosed with congenital hypothyroidism, we expected a similar pattern. However, we had an even bumpier ride than with my oldest. My little one is very sensitive to dose changes, and his TSH would sky rocket up or plummet down with nearly every change. At one point, he became so severely hyperthyroid that we were told he may need to be hospitalized because his heart rate was too high. The time he spent hyperthyroid, albeit short-lived, also contributed to the soft spot at the front of his skull to close early (at 2 months of age), leading us to two different pediatric neurologists for evaluations for craniosynostosis (which is basically premature skull suture closure). Thankfully, he was cleared by the pediatric neurologist. However, he had an erratic sleeping and feeding pattern that was definitely attributable to his never really having normal TSH and FT4 ranges. For the first year, he spent most of his life either being hyperthyroid or hypothyroid. Here is a graph of his TSH for the first year of life:

He is 3 years old now, and has been on the same dose for a while. So, it does eventually level out for even the “toughest” of patients.

I tell this story to help people unfamiliar with this disease understand how important thyroid disease is and how difficult it can be to manage, particularly in children. Adults can articulate what is wrong, describe their symptoms and tell you when they are feeling off. Infants and young children cannot. I also share this to help parents of children with congenital hypothyroidism discern when their children are hyperthyroid and when they are hypothyroid as it is so crucial to get them in the normal range for healthy growth and development.

I found this chart online at stepintomygreenworld.com and think that it describes symptoms of hyperthyroidism and hypothyroidism very well.

However, with infants, I noticed that there are some other symptoms.

Hyperthyroid: When my children were infants and they became hyperthyroid (typically low TSH levels and high FT4), I noticed they were fussy and agitated. They didn’t sleep as well and they had loose bowel movements. Rapid heart rate is another symptom and your doctor can teach you how to check their heart rate and what the normal beats per minute is for their age.

Hypothyroid: When my children were infants and they became hypothyroid (typically high TSH and low FT4), I noticed that they slept way more and seemed lethargic. For example, my terrible napper would go from taking a 1 hour nap to taking 3 hour naps 3 days in a row. They would also be constipated. Now that they are older the tearfulness that I noticed in them as toddlers/preschoolers tends to manifest itself more as being moody. They also become more distracted and have difficulty focusing. Recently, I also learned that nosebleeds can be a symptom of hypothyroidism.

I also want to mention that children with congenital hypothyroidism also may exhibit symptoms even when well controlled on thyroid hormone replacements (Synthroid, Levothyroxine, etc.). The most common symptoms I notice in my children even when their thyroid hormone levels are normal are dry skin, being thirsty and being cold. Pay attention to these symptoms as well and make sure your child's pediatric endocrinologist knows about them.

The thing to remember with all of this is that you know your child best. Over time, you will begin to learn what symptoms your child exhibits when they are hyperthyroid or hypothyroid. If you begin to notice that something is off with them, call your pediatric endocrinologist and tell them you think your child's thyroid levels need to be checked. In the 7+ years that I've been dealing with congenital hypothyroidism, nearly every time I thought levels were off, I was right. You are your child's best advocate!

Readers, please share what symptoms that you have noticed with either hypothyroidism or hyperthyroidism.

by Blythe Clifford

Oct 10, 2013, 9:27 AM

Congenital Hypothyroidism | Thyroid Mom | Blythe Clifford | Kids

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