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Mackfam
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| Posted: April 01 2008 at 9:38pm | IP Logged
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My pediatrician noticed that my thyroid was very enlarged, and encouraged me to get it checked out. I did. My lab results and an ultrasound revealed no cancer, but that I have a very hyper thyroid. I'm in a little bit of shock, and panicked over the treatment. I'm not experiencing any symptoms of hyper thyroid, which is apparently the only thing buying me a little bit of time.
Apparently, they want to "nuke" my thyroid with some sort of radioactive pill, and then since they will have effectively wiped out my thyroid, I'll have to take a synthetic hormone (synthroid) for the rest of my life.
I am nursing a 1 month old though. The doctors would like me to wean - which of course I AM NOT WILLING TO DO!!!!! They asked how long I usually nurse. I told them about 2 years, and of course the doctor said she wouldn't want to wait that long to treat. The other option they're offering is for me to pump and stop nursing for the week after this procedure is done. I can't imagine how my heart will completely break if I come home and the baby asks to nurse and I won't be able to! Not to mention the potential damage this may permanently do to our nursing relationship.
I'm feeling a little pressured. This came out of left field. My heart is absolutely breaking at the idea of weaning my little Katie early. I'm so nervous about what this means for me healthwise. I asked if this could be a result of my pregnancy - would my thyroid recover on its own?? They don't seem to think so. I am panicked and so worried about having to wean. Someone please help me and tell me you've been through this!!!
Anyone been through the procedure? I don't know much about it except that it's some sort of radioactive pill laced with iodine that targets the thyroid gland.
Does anyone have to take synthroid??
Anyone with hyper thyroid that recovered on your own? Does anyone know if that's even possible?
I feel so overwhelmed and sad and panicked right now. I know I need to educate myself, and I will, but right now I just want to crawl into my bedroom, lock the door, nurse the baby, and not come out for 2 years.
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Jen Mackintosh
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JennGM
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Wow, Jennifer. My friend had this problem. It was difficult for her, as she had to isolate herself a bit after the radiation treatment, and it took a while for everything to get balanced.
I don't have any advice except that this diagnosis doesn't come cheaply or easily. Many people can have hypothyroid and it's a "popular" diagnosis, but hyper is more serious and pressing.
I'll pray that you find some answers and peace. I would see if the doctors would let you wait for a few months when the baby is testing a bit on solids, so that you could resume.
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LisaR
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Jennifer, is there any possible way this is related to your just recently giving birth? like, couldn't they "watch it" for another 30 days and THEN come up with a plan. I can see why they do not like the tought of 2 years, but still??...
and also, I am wondering if you were to contact a 2nd or 3rd opinion that might be more helpful. what is the normal protocol might not be the "only" protocol, kwim?
maybe LLL or One More Soul's List of Good Catholic NFP only and nursing friendly Docs could help?
PRAYING!!
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mrsgranola
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Jennifer, I'm with Lisa--- a second or third opinion?? Also, contact a really good LC or LLL Leader in your area to help track down what the latest research is. LLL Leaders can go thru their area professional liasion for more involved medical situations and get deeper help for you.
Praying for you!!!!
JoAnna, newly retired LLL Leader
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folklaur
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Didn't have this - but had a blot clot after my last baby, and when they switched me from the shots to the coumadin (pill form blood thinner) I had to quit nursing. It was terribly hard, but I had no options.
I am so sorry you are having to make this decision!
Praying for you,
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10 Bright Stars
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Jennifer,
I think they may be wrong in teeling you that you had to do this right away. My freind has the same problem, in fact it turned into Grave's Disease, and she isn't having her thyrpid nuked yet. I think they have her on some sort of meds to deal with it. (I cannot remember the name of them now. Maybe Ruth would know.) Anyway, I would see a thyroid specialist.
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Nina
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| Posted: April 02 2008 at 10:56am | IP Logged
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Jennifer,I'm so sorry.I'll be praying for you.Both my son and I take levoxyl,which is the same as synthroid.With this medication I am able to nurse with NO harm to the baby.I am pregnant now and take the med with no problem.In fact,neither my son nor I have ever had any side-effects with the thyroid med.My son was born with a very low thyroid level;his thyroid never fell into the right place in his troat.I would suggest that you get a second opinion from an Endochronologist or even a good Ear, Nose,And Throat specialist.I also have a friend who had an enlarged thyroid gland,I don't think they nuked her thyroid.They just put her on a larger dose of meds.
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JennGM
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| Posted: April 02 2008 at 1:46pm | IP Logged
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What Nina said -- definitely go to an endocrinologist for all this. This is their specialty.
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Jennifer G. Miller
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Ruth
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She's taking an antithyroid med, Methimazole, opposite of Synthroid. I would go see the endocrinologist.
I have been taking Synthroid for 19 years. I have Hashimoto's disease. My dr. wants me to have my thyroid removed, but he said it was only for looks only, because it really is very large. I chose not to have surgery. He did say my thyroid will eventually stop working, and then I do need to have it out. You're in my prayers.
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MarilynW
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Ruth wrote:
She's taking an antithyroid med, Methimazole, opposite of Synthroid. I would go see the endocrinologist.
I have been taking Synthroid for 19 years. I have Hashimoto's disease. My dr. wants me to have my thyroid removed, but he said it was only for looks only, because it really is very large. I chose not to have surgery. He did say my thyroid will eventually stop working, and then I do need to have it out. You're in my prayers. |
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Wow Ruth - I never knew!!!
BtW - I have not forgotten to call you.Just waiting for dh to be done with his conference calls and work.
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snowbabiesmom
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I have had severe thyroid issues since the birth of baby number 4. I was close to a coma in the ER in 2004, with my TSH levels at 139, now after delivering baby #7 in Jan this year, my TSH has continued into the Hyperthyroid level at 0.07. ( norm at 3.0-0.3) I am under the care of an Endocrinologist and I would say definitely make an appt and request and Ultrasound on your thyroid. You can take synthroid and still nurse... The Endo will be able to tell you for sure what you can and cannot take while nursing. If you want to PM me you are welcome to. I will pray for you and all who suffer from Thyroid related issues. It is a cross at times.
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Mackfam
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Thank you all for the encouragement. I'm much better today. 
I am going to see an endocrinologist for a second opinion. I pray this doctor will not just knee-jerk suggest that I wean. I'm pursuing some natural/nutritional treatment options. I'd also like to continue watching my levels over the next few months to see if they won't stabilize on their own. I've just heard from too many people who have dealt with hyper thyroid problems postpartum that were triggered by a pregnancy. There needs to be some time given to let my body normalize in terms of hormones. Having said all of that, I am praying that I do not begin to experience symptoms since it sounds as if those are truly life-interrupting and would require more immediate attention.
I'm not yet convinced that this radiation procedure is absolutely necessary, but if it is I'm so hopeful having heard from others that a temporary weaning can be accomplished with a successful return to breastfeeding.
You are all so good to understand how heartbroken I'm feeling. Not everyone feels this way. I'm going to go hug and nurse my baby now!
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Jen Mackintosh
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Mackfam
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snowbabiesmom wrote:
I have had severe thyroid issues since the birth of baby number 4. I was close to a coma in the ER in 2004, with my TSH levels at 139, now after delivering baby #7 in Jan this year, my TSH has continued into the Hyperthyroid level at 0.07. ( norm at 3.0-0.3) I am under the care of an Endocrinologist and I would say definitely make an appt and request and Ultrasound on your thyroid. You can take synthroid and still nurse... The Endo will be able to tell you for sure what you can and cannot take while nursing. If you want to PM me you are welcome to. I will pray for you and all who suffer from Thyroid related issues. It is a cross at times.
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Can you tell me a little more about your treatment?? You're the first person I've come across with numbers close to mine! My TSH is .02.
I had an ultrasound already. It showed no cancer. Was it supposed to reveal something else I should be on the lookout for? The doctor told me some sort of diagnosis from the ultrasound, but I was in a fog and don't remember what she said.
I'm so glad you posted.
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Jen Mackintosh
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snowbabiesmom
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Well, My Endo for a while has me tested ( bloodwork) every 5 days when I am not feeling good. At times I can be extremely shakey, nervous like and I KNOW it is Thyroid related and I have to tell myself it's not me! I would check my pillow and at times there can be gobs of hair. My skin, esp my face is rough looking, ( probably more to me than to anyone else) I take 137 mcg of Synthroid and recently been dropped to taking 100mcgs on Sundays ( to bring my weekly intake to 132mcgs.. or something like that. I get moved around on the med levels alot and just keep all of the various mcg levels in my medicine cabinet so if my Dr says to lower or increase I can without rushing to the pharmacist. You can ask my IRL friends, like KC and Jess on this board, at times I can be extremely sweaty ( sorry, in writing it sounds worse!) and so incredibly hot and then turn around and I'm freezing... and extremely shakey and overly sensitive.. esp to noise, LOL...
My Endo can feel around my thyroid and make comments like.. feels spongy, or feels gritty.. etc. not sure what he's looking for. Right now I get my blood test every four weeks and yes, it is extremely common to have TSH levels fluctuate after you deliver the placenta. Since I delivered MArk, that baby who went to heaven at 18 weeks gestation, my TSH dropped from 1.9 ( pregnant level) to a week later at 1.2, to four weeks later at 0.9 to 0.09 to now 0.07 and I delivered in January. An Endo should be able to tell you that it is very possible to have your Thyroid bounce back again in a few months.
I would suggest not rushing into anything drastic and wait for the specialist opinion. Continue to have your levels checked. Watch your soy intake.
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KC in TX
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When I read your posts yesterday, Jennifer, I emailed Emily right away as it sounded a lot like her. I'm glad she will be able to help you.
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Mackfam
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Thank you both so much - KC for emailing Emily, and Emily for responding. I am starting to wrap my brain around this, and your story does help a lot Emily. I am so encouraged.
Emily, what's the relationship with soy and hyper thyroid? I do drink some soy when I make the kid's fruit smoothies in the morning, but it's not much.
Thank you everyone again for your encouragement and prayers.
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Jen Mackintosh
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Barbara C.
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Last summer someone in my homeschooling groups lent me some books by an alternative doctor that discussed using iodide and other minerals to treat thyroid conditions and types of cancer. I can not for the life of me remember the name of the doctor or the books; I've put in an e-mail to the person who lent me the books so I can pass it on to you. It may be worth looking into.
I do remember that soy is one of those things that can prevent necessary mineral absorption in some people.
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SuzanneG
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Jennifer:
I'm just seeing this now. Prayers for you during this time. And, many 
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Barbara C.
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The guy I was thinking of is Dr. Brownstein. He has a website at www.drbrownstein.com . The book I read was Salt Your Way to Health.
I hope this can be help you in some way.
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Barbara
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teachingmom
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Jennifer,
When I was pregnant with my now 5yo dd, my thyroid became hyperactive. They put me on a medication that was safe for pregancy. Does the name PTU ring a bell with anyone? I think that might have been it. I remember my endocrinologist telling me that some women go hyper-thyroid during pregnancy and some do so after the baby is born. Those go have it happen as a side effect of pregnancy are likely to have it go away after the baby is born. This was my case. Of those whose thyroid goes hyperactive after childbirth, some go back to normal over time, but many are in for chronic problems. But I got the sense that the ongoing problems could be treated with meds.
The type of treatment you are describing in your first post is exactly what a good friend of mine went through when she was diagnosed with Graves Disease about 10 years ago. She had to wean her 15 month old dd in order to get her thyroid radiated. She is now on medication (synthroid, I think) for life.
I agree that a second or third opinion is in order. My biggest question for the specialist would be do you actually have Graves Disease, or just a hyperactive thyroid?
I will pray for you.
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Topic: Hyperthyroid diagnosis - I'm panicking
