Nursing Mom with Graves Disease

Here is a link I came across: http://thyroid.about.com/cs/alternativehelp/tp/alternativ...

I wish you luck!

R.,
My sister had Graves disease and just had her Thyroid removed in October. While I haven't gone through it myself, I was there with her during the entire time.

We had a friend that had her Thyroid removed last month and just last week had to under go the Radioactive Iodine when they discovered cancer during her surgery. In looking at the recovery times, the medications they have each had to go through and the impact to their lives, I completely support my sister's decision to go with surgery. Though your specialist obviously has reasons for recommending the radiation. Do they feel it's a lower risk for you? Is your thyroid too hyper? Or bouncing around too much? If so, that may be why. To undergo surgery safely, they would need to get your thyroid to settle down a little otherwise you're at high risk for a heart attack.

While they say that the radioactive iodine is a safe solution, I agree that it's a frightening thought. Our friend was lucky and ended up being confined in the hospital for only 3 days, but she's confined in her home for at least a week until she's tested again - she can't be near her family because of the risk of contaminating her kids.

Another thing for you to consider is how your eyes are doing. Obviously Graves disease can affect you in different ways. They won't be able to correct them until your Thyroid is stabilized.

I would suggest talking to your Doctor about the pros and cons of each option, then discussing it as well with one of your other Doctors. Another viewpoint or opinion might help you find what's going to be better for you in the long term.

I wish you the very best. If you have other more specific questions, please feel free to send me a note directly.

my husband was diagnosed with Graves in 1997 and all I can say is get treatment immediately....without it there are all kinds of complications. With treatment, it is very controllable and other than taking a pill everyday for the rest of your life, you wont ever know you have it if treated immediately....bythe way....I was not allowed near my husband during radiation treatment and he was told it may cause him to be sterile....well we had our 3rd child in 1999 after the treatment and my tubes were tied!!!! Our youngest daughter (at the time) also had to go to another house for a few days just to be real safe....Please dont wait to have treatment because of wanting more kids....toooooo many other complications and the risk of sterility is very slight...

I was diagnosed with thyroid cancer at age 18, it was originally thought to be graves disease, and have had 3 surgeries, and the radiation treatment. This was all before getting pregnant with my son. Since I don't have a thyroid I am on 300 mcg of synthroid, as I was my entire pregnancy, and I am also nursing my son. He is a very normal, healthy 9.5 mo. old. My thyroid issues have never created a problem for us. I would highly recommend the radiation. I know it is really scary, especially when you have to stay away from people, but thyroid problems usually keep coming back, and trust me, if you can just take care of it now instead of spending more time later on it. DO IT!! The radiation keeps you from having problems in the future. If I had had the radiation sooner I wouldn't have needed 3 surgeries. If you want to talk you can message me privately. Good Luck with your decision. I'm sure you will be able to conceive again. All they will do is monitor your thyroid levels to make sure they are where they need to be.

Hi R., I don't have any advice for you but I will tell you that my mother had Graves Disease and suffered with it for a long time. She passed away with lung cancer and the Graves played no part in it. My Stepdad worked with a lady who also had the Disease around the same time. This is what happened with the two of them. Both were around the same age, 60 and in pretty good health, my mom chose the radiation, the other lady chose surgery. Radiation worked very slowly on my mom and she was miserable up til the time she was diagnosed with her cancer (she was under dr. care constantly and they say that didn't have much bearing on the progress of the disease). The other lady immediately felt better and is still doing wonderfully. My Dad tried to get my Mom to do the surgery based on his co-workers quality of life compared to my mom, she was just afraid of the operation. I hope just giving you a comparison and talking to your Dr. will help. I am sending you lot's of hugs and more to your little one and family. God Bless you, please keep us posted, I am really rooting for you. Hugs, S.

I realize this post is old, but I wanted to point something out that no one else has mentioned. I was diagnosed with Graves disease and decided to have the surgery. My thyroid was huge, very overactive and they removed the entire thing. Behind you thyroid are parathyroid glands and these can become damaged when they do the surgery OR they can stop working at some point later in your life. That's what happened to me. Parathyroid glands control your body's calcium absorption. Mine stopped working right after surgery, and my doctor put me on a low dose of calcium. After a few months they were working on their own and they took me off the calcium treatment. I thought that would be the end of it. Well about 1.5 yrs. later I was feeling completely miserable and kept going back to the doctor. Finally they realized my calcium level was 6.6, dangerously low. Now I have to take calcium pills 3 - 4 times a day and rocalcitrol once a day, in addition to my levothroid for the rest of my life. Just something to consider when thinking about surgery...

Hi R.,

I have Grave's Disease and have had it since at least 2002. I basically took no treatment because I was afraid of the radiation to destroy my thyroid. I became pregnant in 2004 and took a very low dose of PTU during the first part of my pregnancy and my levels eventually leveled off and I stopped taking (as advised by my doctor). Since giving birht, my levels are definitely not like there were in the beginning, I am barely symptomatic. I am still nursing and have decided not to take PTU until my daughter is weaned so as not to take a chance of affecting her thyroid as PTU does cross into breastmilk.

That being said, I would highly encourage you to explore any and all other options before doing the radiation. Many people have to do the treatment 2-3 times before it is successful and there is lots of time in between. This can severely affect your having another child because you obviously cannot get pregnant during all of this. (Although I believe your health is more important than anything) Not only that, but once it is successful, your thyroid is dead and you will have to take medication for the rest of your life. At least with the PTU you still have options. Many times women are able to decrease their doses of PTU and find that their thyroid levels have returned to normal. Perhaps you can discuss these options with your doctor or find another for a second opinion. It is a choice only you can make and believe me I TOTALLY understand what you are going through.

There's a great website with lots of posts that I am sure you would find support and information from. Check out the message boards, there are lots of women in the same situation and I have always found it extremely helpful.

http://www.ngdf.org

I hopes this has helped in the slightest. Feel free to email me anytime for any reason!

Good luck to you and hang in there!

E.

Hi R.,
My name is T., and I am a stay ay home Mom of two beautiful girls. I am drinking a health drink called MonaVie, which the main ingredient is Acai Berry, which is very high in antioxidants. I have heard of someone drinking MonaVie and it helping with Graves disease. I really think this could help you... Please call me, I want to tell you more about it. ###-###-####. I want to help you. I have more information, but its too much to write. I became a distributor because of how much it is helping people and myself included...Big believer.

Hope to hear from you soon, T. Q

Hi R.,

I went through the same exact thing. After losing 50 pounds in one month and losing hair by the handfulls my laction consultant suggested I see my doctor. So I wasn't diagnosed with Graves until 2 months after my first child was born. Except my situation was reversed. I was hyperthyroid then after being put on meds went hypothyroid. My Endo put me on Methimazole (probably spelled wrong). A very low dose and I was able to nurse while on meds. She never suggested that I try radiation treatment or having it removed. But I was on the meds for almost 2 years. Gradually decreasing the dose. If you are worried get a second opinion.

It's been almost 3 years now that I've been off the meds. I've had a second child and was soooo worried that this would repeat. It never did. But I have had my Thyroid levels checked 2 or 3 times after my second child was born just to make sure.

Good Luck
K.

A friend of mine had radiation a few weeks after giving birth. She nursed her baby for the last time the morning before she had the radiation, no one told her her milk needed to be completely dried up before radiation. It turned out that the radiation went straight to her breasts, straight to the milk. She knew not to breastfeed after this but the problem was that all that radiation sat in her breasts until they checked her. During that time (a few days to a week) she held her newborn, her 4 year old etc. Exposing them to her radiated chest. Had she been dried up evidently this wouldnt have happened. She lives worrying what damage has been done to her, her son and family members she was in contact with. Good luck.

Hi R.,
My entire family has thiroid problems, from Graves to Hashimoto's and eveything in between. I didn't have any problems with my first child but I did have hypothyrid with my second, but I had it before I became pregnant. Sometimes pregnancy trigers a hormonal imbalance which causes a thiroid problem. I would keep doing what you are doing with the PTU until you are finished nursing and let your hormones level out again. Then get checked and see where things are.

If your thiroid is still hyper, I would suggest the Iodine treatment. My aunt did it and she said it wasn't as bad as she expected. She feels much better being able to regulate her thiroid than have it so fast all the time.

As I said mine was low when I was pregnant with my second child and I just had to take my medication everyday and get my thiroid checked on a regular basis. My second son is a healthy 2 year old with a mind of his own and very active.

I really never respond to public posts, but i have to offer my experience to you as i am still presently (and continually) studying my GD. i am a mother of a healthy 6-week old boy, am taking 150 mcg of synthroid each day. i underwent RAI 3 years ago after anti-thyroid meds proved unsuccessful. it failed to eradicate my GD and nodule on my thyroid grew larger. i had a full thyroidectomy and am not on a lifelong treatment regimen of daily synthroid. the RAI didn't affect me adversely; however, it did show scarring on my thyroid once the surgery was complete.

back to present day, i'm breastfeeding fine (every 2-3 hrs) and my son is A-OK (knock on wood).

however, TAKE CARE OF YOURSELF FIRST. if i knew then what i know now, i would never allow stress to cause this disease. also, i wouldn't have my surgery if i were you, unless you have a growing nodule and/or other med treatments prove ineffective. GD can resurface, thus either choose the combination of the natural route (herbs, stress management, yoga, etc - advised for mild symptoms); or medically-managed (meds, RAI, possible surgery - for major onset of symptoms). either way, get your GD under control and take care of yourself first. it will affect your body, your internal system, stress levels that will eventually biologically and behaviorally not only your children but your entire family. mom has to be healthy, #1.

you should really look in to the site www.eniva.com i got on theyre products when i was pregnant....and still take theyre products now.... my order number is 128200 incase you'd like to order something....all of there products are so great....my mother uses the products to fight cancer....my dad uses it to fight diabetis, my mother in-law keeps her thyroid under control with it...and i've just used it for prenatal and to keep my immune system strong so i dont get sick ...i even get products for my kids...try it out and let me know how it works out. tell all our friends and family about it....they truly have the best products out there...

I'm sorry you are going through this. I don't know what it's like, but I have had enough wrong results with medication & doctors that I look for alternate answers. Shaklee has just come out with a product called Vivix. It is designed to improve cell structure by repairing DNA damage, it positively affects cellular deterioration, it helps energize Mitochondria in the cells, and keeps cells from acquiring AGE proteins. The Shaklee web site says this is not recommended for lactating women, but if you would have to give up breast feeding anyway, I sure would look for help naturally, before going a more desperate route. I don't know where you are in severity with Graves, but it is certainly worth checking out. I would suspect that it would be in a form that is to concentrated for breast milk and so that would be why it's not recommended. I'm going to include a link for the product, but they have many great basic nutritional products along with specialty products. http://library.shaklee.net/?country=VVNB&p=RE4%3D&amp.... I selected Vivix Product Bulletin English. I hope this helps. I do sell the product, but I don't care where you buy it from, just do yourself a favor especially if you plan on having more children. Your body wants to heal itself, it sounds like it just needs some help. Best of luck to you.

Hello R.~
I found it interesting to read your request this morning. I was also diagnosed with Graves Disease when I was 3 months pregnant. My was the reverse of yours. I had hyper then after pregnancy went Hypo and now Hashimotos Disease. Is nursing being successful for you? My medication affected my milk so I was told to stop. I have not had to have mine removed, its controlled with medication. What do you mean that you are PTU? Why does radiation scare you? Its much less invasive then any other. My thyroid condition did not stop me from having another baby, we had no trouble other then with nursing, with him I was also not able to nurse. A really great site for research is www.webmd.com I went there after I was diagnosed and did all my research including my medication. Its a terrific source.
I wish you the best..
~God Bless~
A.

Hi R.!
I was diagnosed with graves disease 8 years ago. The doctors first tried to control this with medication, but it was not successful. My endocrinologist recommended having my thyroid radiated. I was afraid just like you. I got a second opinion from a very respected doctor. They looked at my levels and highly recommended having my thyroid radiated. I asked all the questions regarding this treatment affecting my ability to have a healthy child in the future. They said there was no concern with this. So I went for it. I can't remember the amount of radioactive iodine that they gave me, but it was considered to be a very concentrated amount (because my thyroid levels were extremely high). I felt sick for a couple of days (like having the flu). They checked my Thyroid levels once a month until I levels were stable.

My mother was also diagnosed with graves disease. They tried to surgically remove part of her tyroid. It was unsuccessful. Then they moved to radiation. Unfortunately, I have no advice for you regarding having this treatment done and breastfeeding. My guess is to stop breast feeding and do the radiation. It is much more important to take care of you. Graves disease is pretty serious and if not controlled can adversely affect you (i.e., damage your heart, strip the calcium from your bones, etc.). I don't want to scare you, but if untreated it can even lead to death.

I am currently on 500mcg of Levothyroxin and have been all through my pregnancy and nursing. They tested my thyroid levels every time I had a check up. My son is very healthy and is now a very ACTIVE and healthy 13 month old who has been meeting or exceeding his milestones. Good luck with your decision!

I HAVE A NIECE WITH GRAVES DISEASE SHE IS 11 YEARS OLD I WENT AHEAD AND GAVE CONSENT FOR RADIATION THERAPY. ALL WENT WELL AND IT'S ONLY BEEN 4 MONTHS SINCE HER TREATMENT SHE HAS STARTED TO GAIN SOME WEIGHT AND IS ON THE ROAD TO BEING A NORMAL KID AGAIN, GO AHEAD AND GET TREATED IT'S NOT AS BAD AS IT SOUNDS.. A. GONZALES

Hi R.!
My sister and Mom both have Graves disease. I feel for you. My sister had constant panic attacks, and lost weight, couldn't sleep, and felt like she was going crazy. I can't imaging having that and a baby! Anyway, I know all cases are different, but she choose not to do either. She has had to constantly tweek her medications, but has managed to regain her life. She is happy and calm. The doctors says that in the future she may need the surgery, or radiation. This is also what they told her to do in the beginning. It has been three years, and like I said, things are really good for her. I'm not sure about nursing a baby on the drugs. But it seems like it most important for you to take care of yourself so you can be there for baby!