Alopecia World
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Hypothyroidism/AA - 4 yr. old
Hi everyone. I updated our former Pastor earlier about Sarah Beth.
Thought I'd copy that e-mail and paste it here.....
"The end of last week I went to the pediatrician and requested they
do some bloodwork. We got the results yesterday afternoon. Sarah
Beth's thyroid is not functioning well at all. Her Free T4 - Reflex
level should be between 0.58 - 1.64. Sarah's is 0.41. Her TSH Reflex
level should be between 0.34 - 5.60. Sarah's is 105.56! The first
level shows that Sarah Beth's thyroid is not functioning properly.
The second level shows that her body is working hard trying to
compensate. They have scheduled an appointment for her next Thursday
with a pediatric endocrinologist. They can treat her thyroid. They
want to do more bloodwork to learn more about what's going on with
her.
It appears that this is caused by autoimmune disease. No surprise,
as it runs in our family. What we're not sure yet is whether Sarah
Beth's thyroid not working is the only reason her hair is falling
out, or if she has thyroid problems and alopecia areata. Both are
autoimmune, so there is the chance she is fighting 2 things, not
one. We won't know for sure until we see how she responds to the
thyroid treatment.
This has all been really difficult, but Sarah Beth is handling it
with all the same spunk she has always shown. I'm very thankful
there is something they can do for her and that she will feel better
soon. She has really started to be run down. Sleeps a lot and
doesn't want to eat."
That was my update from yesterday. Sarah Beth started on Synthroid
today. The Doctor said we'll have to wait and see if Sarah Beth's
hair responds to the medicine, also. If it doesn't, we'll know she
has both AA and Hypothyroidism.
I have wanted to try the essential oils and possibly onion juice. I'd love to find a support group in NC,
but so far can't find one. Any of you from NC?
Sarah
Beth's first spots showed up 3 months ago and I finally went in and
requested her bloodwork last week. That's how we found out about
her thyroid. She is very tiny from being a micro-preemie and didn't
have the classic symptoms of Hypothyroidism, so they hadn't tested
her. Thank God I asked them to do the tests! Thank you to everyone in this support group!!!! You all are a
blessing!!!
Jodi Wertz
Thought I'd copy that e-mail and paste it here.....
"The end of last week I went to the pediatrician and requested they
do some bloodwork. We got the results yesterday afternoon. Sarah
Beth's thyroid is not functioning well at all. Her Free T4 - Reflex
level should be between 0.58 - 1.64. Sarah's is 0.41. Her TSH Reflex
level should be between 0.34 - 5.60. Sarah's is 105.56! The first
level shows that Sarah Beth's thyroid is not functioning properly.
The second level shows that her body is working hard trying to
compensate. They have scheduled an appointment for her next Thursday
with a pediatric endocrinologist. They can treat her thyroid. They
want to do more bloodwork to learn more about what's going on with
her.
It appears that this is caused by autoimmune disease. No surprise,
as it runs in our family. What we're not sure yet is whether Sarah
Beth's thyroid not working is the only reason her hair is falling
out, or if she has thyroid problems and alopecia areata. Both are
autoimmune, so there is the chance she is fighting 2 things, not
one. We won't know for sure until we see how she responds to the
thyroid treatment.
This has all been really difficult, but Sarah Beth is handling it
with all the same spunk she has always shown. I'm very thankful
there is something they can do for her and that she will feel better
soon. She has really started to be run down. Sleeps a lot and
doesn't want to eat."
That was my update from yesterday. Sarah Beth started on Synthroid
today. The Doctor said we'll have to wait and see if Sarah Beth's
hair responds to the medicine, also. If it doesn't, we'll know she
has both AA and Hypothyroidism.
I have wanted to try the essential oils and possibly onion juice. I'd love to find a support group in NC,
but so far can't find one. Any of you from NC?
Sarah
Beth's first spots showed up 3 months ago and I finally went in and
requested her bloodwork last week. That's how we found out about
her thyroid. She is very tiny from being a micro-preemie and didn't
have the classic symptoms of Hypothyroidism, so they hadn't tested
her. Thank God I asked them to do the tests! Thank you to everyone in this support group!!!! You all are a
blessing!!!
Jodi Wertz
Replies to This Discussion
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Permalink Reply by Betsy Rachel's Mom on
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jodi:
we tried the essential oils on my 10 year old daughter. the aroma is extremely strong. rachel couldn't take the smell, so we had to stop. also, you must purchase medical grade essential oils. get the best quality you can either locally or on the internet. most of the stuff you get in local health food stores or whole foods does not contain the high concentration of pure oil that you need to get the benefit.
good luck,
Betsy
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Permalink Reply by Jodi Wertz on
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Hi Betsy,
Thanks so much for the info. I'm almost nervous to try anything and at the same time feel horrible that I haven't tried anything. I appreciate the info about getting the proper strength. What recipe did you use? I've heard people making their own shampoos with the essential oils. Do you think a 4 year old would do better with that and do you think it would work as well?
I will be praying for your daughter and family. This is all so hard, but God has never failed us. I know He has His hand on Sarah Beth and that all of this will be used for His glory. Your daughter is beautiful!!! God bless you!
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Hi Linsey,
Thanks so much for your response! Thank you most of all for being our "support group"! What an awesome offer! My oldest daughter (10) was standing here when I read your reply and she said, "Mom, she's beautiful!!" Thank you for letting her see that people with alopecia are "normal". I would say, for letting her see that alopecia doesn't have to change people, and that they can do and be whatever God has called them to be. But that wouldn't exactly be the truth. The truth is, alopecia does change people. Just like any trial that comes our way. We can allow God to use it for His good and glory and grow from our experience, or we can let it change us for the bad. So....thank you for being an example of God's grace and glory! I am amazed at all of the wonderful people that I am meeting with AA. They are beautiful, strong fighters. Regardless how long they have been fighting, they never give up.
Sarah Beth started her meds yesterday. Synthroid. She doesn't see the pediatric endocrinologist until Thursday, and boy do I have a load of questions. I so want to do what's right for Sarah Beth. I feel helpless, but God's strength is perfect in our weakness. He will make a way!
You and your family will be in our prayers. Thank you again for your friendship!
God bless you!
Jodi
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Permalink Reply by kastababy on
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Glad to hear you got the hypothyroidism diagnosed -- and fortunately, it is one of the easiest conditions to treat. For more information about hypothyroidism, join this group -- http://thyroid.about.com -- it has some awesome information there and you will learn what to ask the doctors and more about patient rights -- and you will learn how to eat in such a way so that your underactive thyroid doesn't make you gain any unnecessary weight.
Interestingly enough, most people with AA develop thyroid problems at some point in their lives, so make sure to document everything!!!
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Hi YoKasta,
Thank you so much for your response! I checked out the site. It is helpful. At some point I have to start sleeping again. :-) This is what I think.....Sarah Beth is fighting AA and hypothyroidism, steroids only treat topically and not the root of the problem - it seems only naturopathic treatments do that, the synthroid that Sarah Beth is taking can also cause hair loss - go figure, M.D.'s can be very frustrating (I've been fighting autoimmune disease for years!), I'm very tired of autoimmune disease and now I'm having to teach my children to fight the same fight (it's harder than being sick myself!), God is still in control - He has a cure and will reveal it, and......AA people are some of the most beautiful, strong, caring, couragious people I've every met!!! Thank you for introducing yourself!
Sarah Beth started on synthroid yesterday. Bless her heart, she's actually swallowing the pills! I'm so proud of her!! She is such a trooper! I've been showing her pictures of other people with AA on this site and explaining what's happening to her. I'll be sure to show her your picture tomorrow. You're beautiful! Thank you for taking time to respond!
God bless you!
Jodi
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jodi:
as i re-read my most, i realized that i didn't mean to imply that having a child with a thyroid problem is easy. sorry for that, it's so easy to press the "send" button. i just meant that with alopecia there is so little known about it and if it is caused by a treatable medical condition then, the alopecia will go away. again, i apologize for sounding callous.
betsy
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Hi Betsy,
Please don't worry. You didn't sound callous at all. I understood exactly what you meant. To be honest, I have to say we're praying it's just her thyroid. However, her hairloss fits AA more. She has her appointment with the endocrinologist tomorrow. I'll let you know what else we find out. Thanks for your response and concern. I'm so thankful to our new friends at alopecia world!
God bless you!
Jodi
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Permalink Reply by Melanie on
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{{{{ Jodi and little Sarah Beth }}}}
I am 35 years old and have had AA since I was three. I was officially diagnosed with hypothyroidism two years ago. I can tell you that the two ARE auto-immune and it is definitely COMMON for the two to "piggyback" each other. I've been on Synthroid for my condition and am currently in remission from being alopecia totalis a three years ago to having a only a few bald spots today. You may also want to talk to your doctor about corticosteroid shots that can be injected into your daughter's spots to help "jumpstart" growth there... Yes... they hurt... but they DO help with AA.
I know this may seem a bit rough and I'm not sure how to write this eloquently... Know that they thyroid is #1 to focus on... Her hair may come and go throughout the years but her HEALTH is most important... After 30-some years, after going through some rather horrid times being bald as a child, I have come out MUCH stronger and with a great acceptance of others than I think I would have had I had hair growing up...
My thoughts and hopes for better health are with your daughter... and I am sending you extra strength vibes for a very caring mother... {{{ hugs }}}
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Hi Melanie!
Thank you so much for your response! I appreciate the time you took to tell me about yourself. Your response, and others like them, not only help give us direction, comfort and support, but it helps us know how to educate and prepare Sarah Beth. Thank you so much!!
I am curious....do you think being treated for the hypothyroidism helped your remission from AT? I truly think Sarah Beth has AA, going toward AT or AU and hypothyroidism. Getting her healthy is our #1 goal. I'm just curious if treating the thyroid helps a person at least fight AA easier.
Sarah Beth has an appointment with a pediatric endocrinologist tomorrow. I know they are planning more tests. They started her on synthroid 5 days ago.
After we get her thyroid condition under control, she will be seeing a naturopath. We want to try to help Sarah Beth be as healthy as possible in addition to her synthroid meds. If her hair comes back that way...great! If not, at least she will be healthy and strong.
Thank you so much for your kind words and support. They mean so very much!!! You are such a beautiful person!
God bless you!
Jodi
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I wish I could say that treating the thyroid definitely grew my hair back... but I can't... simply because I have lost and regrown my hair so many times throughout my life WITHOUT knowing that I had a thyroid condition... But I do know that I FEEL better knowing that it's one health concern that I CAN do something about... My thoughts are with you and Sarah Beth always...
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Thanks Melanie! I appreciate your feedback. Sarah Beth saw the endocrinologist 2 days ago. They did A LOT of bloodwork. Poor baby! But she was a trooper! The doctor believes Sarah Beth has AA and Hypothyroidism, but is also checking her for other things. She said the results will take weeks. I just want her to be healthy. My other 2 children have appointments also. My oldest' first thyroid test came back high and my son hasn't been tested yet. However, there are some symptoms/markers with them that they have autoimmune problems, also. So, the doctor wants to catch what she can. I'm thankful.
So far, Sarah Beth seems to be dealing pretty well with the hair loss. I'm trying to find comfortable hats & handkerchiefs for her to wear in the sun as she complains that they're all scratchy. I love it when the sun is really low and she can play with nothing on her head. She's so much more comfortable.
I appreciate your encouragement. Meeting positive people like you, helps me know that everything is going to be just fine.
I'm so glad you are geeling better on your thyroid medicine. And that you've had hair regrowth. You will be in our prayers. Thanks again!!
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Hi Jodi,
How is Sarah Beth doing this week?? I just wanted to drop another little nugget about the link between hypothyroidism and hair loss, in case you didn't see it anywhere.
While hypothyroidism CAN lead to hair loss if it is not treated, it is not the root cause of AA, nor should you let a doctor tell you that it is. Once you find a dosage for Sarah Beth that works for her (and I would talk to her doctor about her using Armour Thyroid or Thyrolar as opposed to Synthroid because she is still growing), make sure that she clearly understands that this is something she is going to have to do for the rest of her life. Her medication dosages will constantly change while she is growing up, so make sure they are not giving her too little or too much because it will stunt her growth either way too. I take Levoxyl myself and I take it at night because it absorbs into my system better, but my T4 levels are pretty stable, surprisingly enough.
If she complains too much about her scarves and hats being scratchy, then let her go out without a covering for brief periods if that makes her comfortable. Aveeno has a great sunscreen for children; so does Neutrogena and Coppertone. Just make sure you put it on her head 30 minutes before she goes outside and she should be fine!!
If you have any questions or want to talk at all, just send me a msg and I'll get back to you as soon as I can!!
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