Graves Disease-questions

nsreigle · May 2014

Good morning!

Three months post partum I was diagnosed with Grave's Disease. They ruled out post-partum thyroiditis and given a strong family history with labs this was my diagnosis. I am seeing an endocrinologist and she said I have three options 1. anti-thyroid medication short-term 2. surgical removal of thyroid gland 3. radioactive iodine.

For now I chose to take methimzole 10 mg each day and according to my doctor and a couple of other resources it is generally considered safe for breastfeeding moms, although right on the bottle it says "do not take if pregnant or breastfeeding" so of course that worried me- I chose to still take it although it worries me. we are going to my daughter's 4 month well baby check today and I will discuss this with the pediatrician to see if he has any suggestions or thinks drawing her labs would be helpful.

Has anyone else experienced this condition? What did you do?

I am really looking towards alternative methods of treatment (nutrition, chiropractor, supplements, etc.) but I am conflicted about what is right/wrong and what to/ not to believe. I am looking for a more natural way of dealing with this instead of just a medication or surgery.

Thank you!

hayleyclaire · May 2014

Hi!

I am mostly a bump lurker, but I feel compelled as a fellow graves sufferer to respond.

Please please listen to your doctor. If you don't feel comfortable with him/her find another endocrinologist. But please don't self treat. Continue to take your medicine and think about what is the best long term option for you.

If untreated, graves disease can kill you (my cousin almost died of a thyroid storm about 4 months post partum) or can do serious damage. If untreated, it will definitely hurt the quality of your life.

Right now I am on mathimizole as well as a beta blocker. I don't like taking it, but I do really feel much much better. I am not sure what I am going to do long term. I was leaning toward the iodine (don't want to risk a relapse, which is common with the drugs and surgery scares me) but I am really feeling so much better right now I might continue with the mathimizole until they wean me off of it after my levels are more normal. I am in a different position than you are (I was diagnosed after I lost a pregnancy, so no small baby at home). If you did the radiation you would need to stop breastfeeding and you would have to be away from your baby for some time until you were less radioactive.

The only thing that my doctor said to avoid is too much caffeine and too much sugar. Both make your heart rate faster and don't help with anxiety. I understand the impulse towards diet, supplements, etc. The options we are given truly suck.

However, the condition is just too serious to go for alternative medicine--which by and large are not supported with good research. I highly recommend the book "Bad Science" by Dr. Ben Goldacre for his discussion of chiropractors, nutritionists, etc. If you go to a chiro and they are ethical AT ALL they will insist that you work with your endocrinologist as well. Anyone who tells you to simply ditch your pills is not looking out for your best interest.

I am not a doctor and this shouldn't be taken as medical advice, just the thoughts of someone who is here as well. Good luck with everything and congrats on your new baby.

MesmrEwe · May 2014

hayleyclaire said:

Hi!

I am mostly a bump lurker, but I feel compelled as a fellow graves sufferer to respond.

Please please listen to your doctor. If you don't feel comfortable with him/her find another endocrinologist. But please don't self treat. Continue to take your medicine and think about what is the best long term option for you.

If untreated, graves disease can kill you (my cousin almost died of a thyroid storm about 4 months post partum) or can do serious damage. If untreated, it will definitely hurt the quality of your life.

Right now I am on mathimizole as well as a beta blocker. I don't like taking it, but I do really feel much much better. I am not sure what I am going to do long term. I was leaning toward the iodine (don't want to risk a relapse, which is common with the drugs and surgery scares me) but I am really feeling so much better right now I might continue with the mathimizole until they wean me off of it after my levels are more normal. I am in a different position than you are (I was diagnosed after I lost a pregnancy, so no small baby at home). If you did the radiation you would need to stop breastfeeding and you would have to be away from your baby for some time until you were less radioactive.

The only thing that my doctor said to avoid is too much caffeine and too much sugar. Both make your heart rate faster and don't help with anxiety. I understand the impulse towards diet, supplements, etc. The options we are given truly suck.

However, the condition is just too serious to go for alternative medicine--which by and large are not supported with good research. I highly recommend the book "Bad Science" by Dr. Ben Goldacre for his discussion of chiropractors, nutritionists, etc. If you go to a chiro and they are ethical AT ALL they will insist that you work with your endocrinologist as well. Anyone who tells you to simply ditch your pills is not looking out for your best interest.

I am not a doctor and this shouldn't be taken as medical advice, just the thoughts of someone who is here as well. Good luck with everything and congrats on your new baby.

AMEN!!!!!! It took me quite a few endocrinologists before I found "the one!" and then last summer she moved to a private-private practice (i.e. you have to work for the company to get an appointment with her), so have been doing a search for a new one that's even half as good. But I'm trained in alternative/complimentary care and what heyley said is ABSOLUTELY true - don't go alternative medicine on this one - It's not called GRAVES because of sunshine and rainbows!

mysticl · May 2014

If you haven't done so already contact the Infant Risk Center at 806-352-2519 about the medication and breastfeeding. They are the go to people for that information.

As for the rest. My mother was diagnosed with Graves Disease when I was in high school. She went the radioactive iodine route and now takes a daily thyroid replacement drug. Since I was in high school I was able to care for my self until she wasn't radioactive and we didn't spend anytime in the same room until the doctor cleared her. We did send my dog to the kennel though.

You need to do what the endocrinologist says. This is not something that can be treated alternatively and as PP said it is something that can kill you. She also mentioned your quality of life. It doesn't just affect yours, it affects that of the people who live with you. I'm sure you've figured out that it affects your mood and behavior. That is very difficult for a child or teenager to deal with.

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