Pregnant and have questions

[icudoucme]

I am pregnant and 34, my last child was born with neonatal Graves 2 years ago.  I had RAI in 2002.  I am on Armour thyroid.  I had all my labs done during pregnancy last time, and meds upped during that time, but my daughter was born with neonatal Graves anyway.  I also had to be treated for TED right after the pregnancy, and just stopped the high dose steriod treatment two days before I found out I was pregnant again(tappered it down slowly).  The steriods induced Diabetes, and lots of weight gain so I was dxed with metabolic syndrome.  My question concerns testing.  What tests should I be having done during pregnancy.  I would also like to know what they can do to find out if the fetus shows signs of Graves, what treatments can they do, or can they?  Is there a test that will show weather the fetus has Graves during pregancy.  I have seen that they say TSI can be an indacator if it is really high, my last TSI testing was done two weeks post pregnancy and was double that of normal.  I'm worried that my Graves is still very active, as now I am having problems with my skin on the front of my legs.  There are very few doctors in my area that treat Graves so having this information will help me when I do find one that will treat me while I am pregnant.  Any help would be great thanks.

[BC80]

Thanks once again for all your knowledge. Congratulations on having twins!!!  I hope this pregnancy runs a lot smoother than before.  It really sounds like you've had a real struggle with your Graves symptoms but it is good to hear that you have found a doctor that is willing to work with you.  When were you first diagnosed?  My symptoms are very few as long as I take my medication but I still feel that my endo could be doing more for me.   For instance, you mentioned that your blood sugar levels are being monitored by your doctor.  Does this have anything to do with your eyes?  I've tried seeing a couple of Optomologists, but none of them have worked well for me and there are no other Optomologists in my medical group that I can go to.  

I really hope that my baby will be off the meds soon.  It just seems like the pediatric endo is being very cautious.  I believe she mentioned that she doesn't want to give the baby too much medication, fearing that she might become hypothyroid.   I know that her T3 and T4 are in normal range but she keeps mentioning that her TSH is suppressed.  During the next visit, I will make sure that I have her explain to me in detail what she means.  Also, I'm going to take your advice and ask her about the PTU and beta blockers.  Also, I'm going to see how many other Graves patients she has dealt with.  I should have done this from the start but this is a whole new learning experience for me.  

After being treated for neonatal Graves, has your daughter had any other health issues?  

Wishing you the best,

[icudoucme]

I haven't seen an Endo in over a year, I have found just a reg doc that has been treating me, I trust her whole heartedly, she is a young doc, and is willing to learn more about my condition, than what the Endo I saw even knew about.  She has done alot of research to help treat my Graves, and with my help she and I have come to know what my treatments should be.  I just had my first Sono yesterday, and boy am I worried, turns out it's TWINS!  I'm only 3 months.  The doctor I have now has been treating me since I had my emergency C-section(as the one I had then couldn't do it, not qualified).  I'm glad that I had her during that time, and it helped me to trust her.  She has helped me threw out treatment for my eyes as well, as my Opthamoligist just seemed to give up on any treatment for me, and didn't monitor my blood sugars or even tell me that it needed to be done.  I have had a real struggle dealing with all my Graves issues, but she has done her very best at getting me the treatment we both think is right.  It seems that I have come to find that the younger and newer doctors are more willing to learn and are more up to date on treatments.  My doctor will be consulting with a thyroidoligist during my pregnancy, as I have found one within four hours from the town I live in.  I don't live but 2 hours from our state capatiol and we don't even have one thyroidoligist in any town here.....go figure, we do have Endos but I think I would be best suited with a real thyroid specialist.  
On to you daughter, you can have your daughters meds compounded into liquid, and that will help with being able to get her to take it.  Just do some calling around to find a pharmacy that does compounding, if you can't find one, call the hospital NICU unit and ask them if they can tell you of a pharmacy in your area that can do this.  There was only one here that did compounding.  Also it sounds like it won't be long to have her off meds all together.  Every five weeks I think is to long to wait.  I would ask the doctors for more frequent testing.  I would be asking my daughters Endo what she is basing her knowleadge on, if she hasn't dealt with this before.  I would also ask her to see if she can find a ped Endo that has dealt with this to consult with.  This isn't something that shouldn't be actively treated, the wait and see game doesn't work here.  Ask your doctor if the baby should be on a PTU and betablockers, and make sure that they check her blood pressure and heart rate at each visit.
I can't post a web site, but I can recommend how to do a search for some info that helps with all kinds of thyroid problems, do a search for thyroid manager.  I learned alot from that site.  
Endos are good for treatment of thyroid, but most specialize in diabetes not thyroid issues.  So if you can find a doctor that you trust, and one that is willing to treat you that isn't an Endo go for it, just make sure they are willing to admit when they think they are over there head, and when they may need to consult with a specialist about your condition, or even your babies!  Being active in your care, and knowing what is going on is your business.  Ask questions, don't feel stupid for not knowing, your not the doctor.   Write down questions you have for your doc, and for your daughters doc each time you go in, and read them to them, or show them.  Make sure you get answers, if they can't answer them, ask them to find out, and call them back for the answer.  Do some searching and reading, and you will do very well.  
Val

[BC80]

I just want to tell you how wonderful it is to have someone to consult with.  You have been a great help.  
My daughter has been on Methimazole but no beta blockers.  She currently takes one quarter of a 5mg tablet every other day because the doctor says her TSH level is still supressed (not too sure what this means) but her T3 and T4 are in the normal range.  Also, she gets her blood work done every 5 weeks....I wish it was done more often.  I don't believe any of the pediatricians in my area have dealt with neonatal Graves so it has been a real challenge even the pediatric endocrinologist that my daughter sees hasn't dealt with this so I'm not too sure how she bases her decisions.  I've thought about switching doctors but I don't believe I'll find anybody better in my area.  The ped endo seems to be more concerned with her weight and height gain, which seem to being doing well.  I feel so ignorant when it comes to helping my daughter and when I go on the internet I don't find very useful information that is why I'm so happy that I meet you because you have been giving me better information than any doctor or internet search can provide.   This is my first baby so I feel completely lost.  I can't even picture what life will be like with her at one year old because the past four months have been so challenging. Knowing that all has gone well with your precious angel really helps to put a lot of my fears at ease.  If you don't mind me asking, how many months pregnant are you and have you found a good endo to help monitor you while you are pregnant?  I would love to eventually have more children but like you I want to be well prepared.  

[icudoucme]

Oh I just wanted to say feel free to ask me any questions and as many questions as you want, It feels good to be able to help someone who is dealing with what I had to.  I just wish I had found someone who had dealt with it when my dear daughter was sick, it would of made it easier.  This time around I don't plan on going into this pregnancy blind.  I'm going to have the right care, and treatment because I don't want my dear baby to suffer any longer than they have too!

[icudoucme]

At four months my daughter was really over neonatal Graves, mind you she was Dxed with it two weeks after birth.  She had it for almost three months.  As for the sleeping it is possiable that it could just be that she doesn't sleep well, but also  what meds is she on?  She should be on PTU and possiable that she may need betablockers.  Not all Graves patiants need betablockers, but if she has a high pulse, it may help, which might also help her sleep better.  I don't know about you but when my heart races I can't sleep, and I am sure that also is true for babies.  Another thing about your sweet baby is that you make sure that she isn't hot in any way, as with Graves it can cause an elevated body temp, and if there is to much heat that could also help keep her from sleeping.  My little one loved to sleep with just a diaper, during the time she was dealing with Graves.  If she got overheated she always got these red dots(looked like bites almost).  They had her in an incubator when she was in the hospital, but had to turn the heat off because she would get way to hot.  I learned no clothes and maybe a small light blanket which wasn't wrapped tight around her, helped keep her just right.  Also Graves can put your sweet baby at risk for other things, my daughter received shots during the RSV season, to keep her from getting it, or getting it so badly, she did get it but was only in the hospital for three days, it was good that she received the shots.  The shots are very expensive, but worth it.  The cost of them was like $1500 each shot.  Insurance will cover them if the babies doctor proves that it is worth it.  How often has your daughters levels been checked?  It's very important to have them done so that they can adjust the meds.  The longer it takes to get her over the neonatal Graves the more likely it is that she could develope more symptoms of Graves.  So make sure that she has her blood tests done, and that they are checking them often enough.  Like I said my babies doc checked hers every week, and each week adjusted her meds.  Your should be doing the same.  If you don't feel comfertable with your childs doctor, and the way they are treating your questions maybe it would be best to check out others.  My childs doc is just a Peds specialist, but consulted with a peds endo for care, it is possiable to do things like this if you don't have a good doc there.  my childs doc only had seen neonatal Graves 3 times in her 36 year history of being a doc, so I was lucky that she had done any treatment for this at all.  All the other NICU docs hadn't ever seen neonatal Graves, which was more than 5 doctors, so make sure and ask your doc about how many times they have dealt with this issue, and ask them if they indeed think they should be handling it if they don't have the experence.  Always ask questions, and if you feel your not getting answers its best to find someone who will.  Have the doctors checked your daughter for a goiter?  Most don't get it but it is possiable.  During treatment she almost always never slept because she was taking meds every three hours, and they overlapped times with her feeding times, so she never slept much till the meds stopped.  It's very important also that her meds are taken on time, to keep the levels at normal ranges.
Val

[BC80]

You have been a great help to me.  During these past 4 months, I have felt very helpless.  I know the doctors are there to help but oftentimes they look at you strange when you keep going back to them.   My daughter is doing well but she struggles with the symptoms of neonatal Graves...mainly her sleeping is always off.   It makes it very difficult when you can't tell the difference between what a normal baby goes through during different stages and what a neonatal Graves baby goes through.  One doctor tells me her symptoms are normal for a 4 month old and then another doctor tells me they are her neonatal Graves symptoms.  It's very confusing.  
I'm doing well on PTU and do not want to have RAI or surgery. I've been doing a lot of reading and I've decided against those options for the time being.  I don't have very many Graves symptoms as long as I take my medication.  
It sounds like you have had a real struggle with your symptoms.  I wish you the best because I know how difficult it can be both emotionally and physically.  
At 4 months what were the symptoms your daughter experienced with neonatal Graves?   Should I be concerned about her sleeping?   I'm sorry for all the questions but you are the best help even better than the doctors.   Thank you!

[icudoucme]

I want to thank you for the wishes.  I'm glad that I could help with the questions that you had.  It was so hard for me when I had to go threw it alone, without anyone to share it with.  My doctors all made me feel like **** at first because they kept saying I was the one that made the baby sick, saying things I had done made her have the problems she had, that was all before they found out that she had Graves.  I was so angry with my doctor, and the one of the NICU doctors.  I'm now glad that I could be of some help to some others that have had there sweet little one deal with neonatal Graves.  Good luck in the future.  Being on PTU during pregnancy is good, if you didn't have any problems with it during your pregnancy then I would suggest you stay on it, if there were problems then I would have my doc change me back.  I took Methimazole right after I was dxed and also was on betablockers, they never really worked, I never leveled out before RAI, and after that it took me three doctors to get my thyroid levels into check, at which point my TSH was 94 and I was hypo taking my hyper meds for god knows how long.  I felt like I was lost.  Keep on with the PTU or Methimazole and please don't try RAI as it has been linked to worsting the Thyroid Eye.  Thyroid eye can get really really bad, I had to take steriods for two years(the dose was considered toxic)and also had radiation on my eyes, which helped, but a very small amount, and the steriods helped, but during tappering they would inflame again and the dose would have to be upped again.  So please don't let the doctor tell you RAI is the way to go, if anything you should consider surgery if it comes to that.  With the drug treatments it is possiable(not always)to go into remission of Graves.  It won't always not be there but it could be possiable, with the other treatments it is not possiable at all.  So think things over if a doctor recommends RAI, or surgery.  If you do go those routes please check out mediboard they can give you information on both, and what some of the effects or side effects are.  Thanks alot for the wishes, and remember you are your best advicate!

[BC80]

Thank you so much for all the information.  I was diagnosed with Graves in March 2006 after going to the doctor for an eye infection (which did lead to me developing thyroid eye).   I was originally placed on Methimazole but then I became pregnant and they switched me over to PTU.   My Endo watched my labs closely and adjusted my medication accordingly and was very surprised when I told her that my baby had developed neonatal Graves.  While pregnant, my OBGYN did not suspect any complications so he did not see a concern to monitor me very closely.  The OBGYN even had to induce my labor because the baby had gone over its due date.  Thus, it was a shock to my doctors that my baby had developed neonatal Graves.
I would love to see a  thyroidologist, I didn't even know they existed.  If I become pregnant again, I would like to be monitored even more closely than I was before due to my having a higher chance of having another baby born with neonatal Graves.  I will look more into the Mediboard.  
You have been a great deal of help!  Thank you and best of luck with your pregnancy!  

[icudoucme]

One of the things I like so much about the forum is that it gives you links to alot of things that you can read regaurding Graves and there is a very limited amount of stuff there that can tell you about neonatal Graves.  They show you the options that you have as well while your still being treated with PTU, most on the forum there are against RAI treatment though, as I am in a way as well, but more because I really wasn't given an option of PTU or RAI, and I wasn't given enough information to make a informed dicesion.  So I hope that you will visit the Mediboard, and join.  It will give you alot of information, and you can ask questions of the people there that have alot more info and knowleadge than I.  Good Luck.

[icudoucme]

Beacause Graves is already considered a rare disease, neonatal Graves is even rarer.  They say that one out of every 80,000 babies born are affected with neonatal Graves.  There is always a chance that your next child will not be born with it, but you are at higher risk now to have a baby that is.  Although my case is a bit different than yours because I have been hypothyroid for more than five years now.  But in your case it seems that one of the reasons you might of actually given this to your dear daughter is because your thyroid levels weren't monitored very well during your pregnancy.  One thing you need to make sure to have checked now that your baby is almost 5 months is your eyes, making sure that you see a specialist if you are having any pain in them at all, even excessive tearing could mean trouble is on its way.  Also you might want to let your Endo know that your baby has neonatal Graves.  One thing about you seeing an Endo is that alot of them really know more about diabetes than thyroid, I would suggest a thyroidologist, and check the sites the doctor listed they have many listed there.  Sometimes even if there isn't one close by you could see a reg doctor and have them consult with the thyroidologist as my doctor will be doing.  I've had to deal with alot of Graves induced problems, and it seems you may be on your way.  How long have you known you had Graves?  

[BC80]

Thank you so much for the information.  I've spent many sleepless nights wondering if she is going to get rid of the neonatal Graves. During my pregnancy, I was being controlled with PTU and my endocrinologist assured me that my baby was going to be fine.  Then 3 weeks after she was born, I got the news from the pediatrician that she had neonatal Graves.  This is my first baby so the news really hit hard.  It has now been 4 months and my baby is on medication and she sees a pediatric endo every month.  My daughter seems to be doing fine except there are days when she doesn't sleep well. I tried finding informaiton on the internet about other mothers who have had babies with neonatal Graves and game up with nothing until I came across this page.  I want to thank you for the iformation because it helps to put me at ease.  I also would like to have more children but I'm really afraid because it has been such a struggle.  I know that I can pass the neonatal Grave's to my other children, but is there a chance that I may not?  I will definitely check out Mediboard.  Thanks again!

[icudoucme]

I'm a member of the Graves forum here, it's related to this board, but it's called Mediboard, and it deals with Graves, the ones on this forum don't really know much about the neonatal Graves, but do deal with a great deal of Graves in adults, you should check it out.  If you do sign up I'm listed as lookin4aclue and would be glad to chat with you about any Graves related issue(this makes it to were you can email me if you would like)

[icudoucme]

BC,
neonatal graves is something that can be treated in an infant.  It's treated with PTU and betablockers, and it is a passing thing for the infant, unlike the form that you have.  It can take as long as 6 months to pass, but most infants get over it in as little as three.  My daughter is doing well, but the graves did effect her eyes before it went away, it wasn't really bad on her eyes though, as it just made them look like she was very wide eyed.  It took the NICU unit two weeks to find out what was wrong with her, but once they had started the PTU and betablockers it made it to where she could come home three days later, although we had to have her blood drawn every week for the next two months to monitor her thyroid levels.  The meds she came home with were given several times a day, and the way the hospital had it set up, she almost never got to sleep.  She was born a month premature due to her heartrate and the distress from the Graves.  But she is doing well.  There are other things that neonatal graves can cause if not treated properly such as mental retardation, and the growth of the bones in the skull can close before they should which we had to watch for, for some time.  But other than doing things a bit later than all my other children she appears to be doing well.  I know that this is a stressfull thing for a new parent, exspecially if you didn't exspect it in the first place.  I have done some research on Graves and found that sometimes after 6 months that the infant might need to be tested for Graves again to be on the safe side, and my childs doctor did do that.  She was just a pediatric specialist, but was having to consult with a preds Endo for her care.  I was very lucky to have her in the NICU as she was the only doctor in our area that had ever even seen Graves in an infant.  Do yourself a fav.  don't stress the little stuff, it will get better.  The only reason your daughter has this is because it is passed to her threw the placenta and once out of you her body will have to start to use her own thyroid function, that is why it goes away.  Just remember that if you become pregnant again that there is a higher chance of passing Graves on to the next child, and to make sure to see a specialist, as there is treatment for Graves while you are pregnant!  Good Luck, if you have any other questions let me know, and I'll try to answer them for you.  
Val

[BC80]

Has your daughter overcome the neonatal graves?  The reason I ask is that I just gave birth to a baby girl with neonatal graves and I really don't know much about it.  Thanks.

[icudoucme]

Just wanted to thank you very much for telling me about thyroidologists.com and thyroid.org, with those sites I did find a specialist that is four hours away, but my doctor is going to consult with her for my care.  It's great to have sites like that that can point us in the right direction.  Thanks again!

[Mark Lupo, M.D.]

This is a tough situation.  Despite the post-RAI hypothyroidism -- which is being addressed by the Armour thyroid, you still have the non-thyroid problems with Graves disease (ie eyes and possibly pre-tibial myxedema -- shins).  The elevated antibodies were the cause of your now 2 year old's neonatal graves.  TSI persists despite RAI and surgery in many cases and should be tested in pregnancy to determine if the child is at risk for neo-natal Graves (levels >2-3x normal are suggestive of a higher risk).  Post-pregnancy the immune system flares -- this is why your were effected.  This is different from post-RAI flare of TED.

Would watch TSI during pregnancy -- would consider measuring it every 2 months given your history.  There is also a test called TBII which may or may not predict neonatal Graves but more data is associating this antibody with TED activity.  

It is also important to keep a close watch on TSH during pregnancy and adjust the medication (armour) as needed to keep TSH 0.3-2.5 range.  

The immune system attacks thyroid proteins -- so a distant concern (though more hypothetical than proven) would be the thyroid proteins in the dessicated pig thyroid (armour) that the immune system is attacking.  Given the complexity of your case, I would be inclined to use a synthetic T4 to see if this makes any difference.

Check out thyroidologists.com or thyroid.org to find a specialist near you.

Good luck.