Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
I was just diagnosed w/ grave's yesterday. I'm 4m postpartum and was praying it was only a postpartum thyroiditis., but my obgyn called yesterday to tell me that the antibodies came back positive for Grave's. I don't know where to go from here. I'm currently on propanolol 30mg in am and 30mg in pm, and was just started on methimazole 40mg daily for 5 days then 10mg daily after that. Does this sound ok? should I get RAI if that is suggested. I get the idea that some people disagree with RAI. Why is that? I'm very scared at this point and am still nursing my son. I don't want to have to give that up. And I'm very concerned about eye problems. Is there a way to avoid that or a good treatment, or am I just destined to have puffy buggy eyes? Please Help Me!! I can't see an Endo until December, I'm very upset and sick about this!
There is lots and lots info on this board. I just wrote a post about medical advice where it gives you an idea on how to use the advice given on this board. It takes hard work to inform your self, especially when not feeling well and having a new born but that is what you need to do to stay healthy. Since you are an RN too (I am too) it should be easier for you to understand medical terminology.
Also, not seeing an endo untill December seems NOT a good idea. Granted, not all endo's are up to snuff either with how to treat you the best but changes that a PCP has no clue what their doing is a heck of a lot bigger although the sign that they ordered anitbodies is a good one!
What antibodies did they do? And what other tests were done and what were your numbers?
Since you are a nurse, can't you pull some strings and use your contacts to see an endo asap?
Anyway, my toddler needs my attention, so I got to keep it short but I hope you will be less scared soon and most of all feel better soon!
Nathalie
http://elaine-moore.com/QA/tabid/57/forumid/6/scope/threads/Default.aspx
I just wrote quite a bit for Yvonne that applies to you too. You two seem to be starting out at about the same time.
http://www.dailystrength.org/c/Graves_Disease/forum/13022048-just-diagnosed-graves
I often think they should create a name just for gals in your position Postpartum Graves'. I say this because over the years I see a clear pattern. You gals tend to skew the averages for the rest of us, because with very few exceptions, you all dip down to a lower dose of the ATD quickly, and also hit remission at the holy grail of 12 to 18 months. Most of the rest of us are going to need about four years if we can make it through the trials of doctors pushing RAI.
Yeah, it's cheaper, and post RAI patients eventually never have to worry about being hyperthyroid again, but they do still have all the Graves' antibody problems. Not a hot deal in my opinion. A lifetime of being a patient , potentially begging for enough hormone prescriptions to feel well, an the never ending risk of the eye disease. RAI increases our TSI antibodies the first year. Then starting at about 1 year, these TSI shift, and blocking and binding antibodies increase. It's a never ending situation.
You are in the special position of having a perfect excuse to put off any RAI for some time becasue of your new son. You would need to be separated from him for three days after the uptake scan, and longer after the RAI itself. Baby thyroids are at great risk from radiation.What you are protecting him from is the potential damage radiation would cause resulting in hypothyroid, and also the risk of thyroid cancer at a later date. They say 30 years later. Yikes.. that's when he should be happy, healthy, and with a new family of his own. Breast feeding is obviously out of the question.
Obgyns are often brilliant treating thyroid. Your very lucky there. When women have problems finding a good doctor, I always suggest their obgyn, because of their reputation.
The 40 mg for 5 days and then 10 mg is unusual, but I like the sound of it. Seems like a very good idea !
I think the logistics will take some thought on your part, but it's very do-able. The standard recommendation is to feed, then take the pills so the full strength is not in the milk. MMI can be taken only once a day, but is better when split into two or three doses, to maintain steady levels. Your pediatrician will also need to be in the loop, so the babies thyroid levels can be checked..just to be on the extra safe side.
Once your down to the 10 mg it might work well to take 5 mg twice a day, steadier levels for you, and a smaller dose to worry about in your milk. It's the 40 mg I'm more concerned about. At 4 months I don't remember getting much sleep yet. Both ATDs are approved for BF, so that parts easy to reply to.
Would you mind putting together a question for Elaine on this ?
I don't trust my memory on this .
http://www.elaine-moore.com/QA/tabid/57/forumid/6/scope/threads/Default.aspx
The eyes = It's all about the antibodies. Our antibodies cause the thyroid to work over-time and they are the cause of our eye disease. You will most likely be just fine.
Pam
Welcome to the group !
This is great. It will be your first time having the opportunity to walk along side a brand new mom. Just you wait. They make it look so easy, the rest of us feel like stick-in-the-muds. LOL
And that's only fair if you ask me. New moms have enough other things to think about. The only un-fair thing is once in awhile we have a new mom that it turns out weaning is what it takes to hit remission, and they have some doctor pushing RAI on them, so they buckle and wean. That part I really hate. There's absolutely no reason to force such weaning. If it takes a small dose for a bit longer that we expect..heck, that's fine too.
Your dosage sounds pretty reasonable and a lot like what I started with. I got Graves right after my second child and I was pretty freaked too. It went into remission for 10 years.
The Mez is to settle the thyroid and the PopanoloI is to settle your symptoms like shaking and not sleeping. I took the pills that you are and went for blood tests every 6-8 weeks for a year. Test helped the Endo decide to increase or decrease the Mez and then there it is just a waiting game until you go into remission or not.
RAI is not forced on you. When you talk to your Endo, he/she can discuss the options and you can make an educated decision. The first time I got Graves, it was suggested I take pills and go for remission. This second time it was suggested of me to take RAI because remission wouldn't likely happen, but with my migraines so bad, it was decided to finish working on that issue before risking the swing that RAI could give you.
There is a lot to consider, yes. Is December too far away? Not so bad from my experience. Hope I helped some.
MMI has a short half life (6 orso hours). Based on the info in the site above, I would think you could do two things (after talking with your provider:
If you are set on continuing nursing: Talk to your provider if it is an option to start on a lower dose of MMI. Depending on your breastfeeding style (on demand or more or less a schedule) and your supply, you may not have to dump all your pump sessions or maybe even be able to feed your baby without dumping. But this idea is based on the site's info and I would research it more. I pumped all my milk because nursing was too painfull, for 6 months. I had so much supply that after 3 months I only had to pump 4 times a day to provide enough bottles for more than a day demand.According to this site it has been advice that "Taking methimazole right after nursing and waiting for 3 to 4 hours before nursing again should minimize the infant dosaged ".Again, absolutly research that but if you could do what I did, you do not have to waste anything! I know how precious that milk is! This ofcourse only if your baby takes bottle and breast, or if she is fine with feedings spaced a part that far.
Another thing that then answers an other question: How often do you take MMI? I think BID or even TID is best. It will keep you feeling most stable, in my experience. But, if breastfeeding is something you are not willing to give up you might want to consider QD.
Now, have you considered weaning? Do not get me wrong, I am a HUGE breastfeeding advocate and I went through great trouble to be able to feed my baby breastmilk. But I am just playing advocate of the devil here. Breastfeeding is hard on you, physically and emotionally. It is demanding and if you have to pump too ... well that is even worse. You now have to pump AND feed your baby. This costs 2x the time of a normal nursing session plus cleaning all the supplies, etc. You already feel like crap, I assume, you have 2 children, post partum, the stress of this disease etc. And also the manufacturer advices not to nurse while taking MMI, period. You want to use all your energy for getting better. Again: I am not suggesting what to do, just thinking through the options.
When I was 6 mo PP I was diagnosed with Hashimoto's. We are talking about a TSH of 50 here. I felt like crap for a long time but blamed it on being a new mom, recovering from HELLP with organ failure and breast feeding ( I pumped fultime due to severe pain from the nipples, I had a little baracuda baby). I kept going and going, because I insisted on providing the milk. When I was finally diagnosed, I quit breastfeeding ASAP. I was drained emotionally and physically. I wanted to get better. The weird thing was: Both my son and I rappidly grew into a lot happier beings. In the end I saw I had deprived both me and my son with not taking care of my self better. Sometimes the benefits of a healthy, happy mom, outways the benefits of that precious, nutritious breastmilk.
About the eye surgery ... take it easy ... You do not have TED at this moment, right? Use your energy in focusing in on fun things, instead of worrying about a surgery you might never need. Okay, Oprah and Dr Phil have spoken, again! LOL
Good luck for you!
Nathalie
It got a little tricky in the car though. At one point the little bottles were to small, I could pump one of those big ones, full, per side in one session. They needed support so no hands free any more LOL.
Glad to hear you got the right resources. I might be preaching to the choir so just shut me up if you need to. But as a nurse my self, I even had only half a clue what this GD all entices. So just trying to give you any help I can give.
Your a life saver. Thank you so much for finding the info for BF and taking the MMI. It's been too long, and I worried I might be remembering wrong. Anytime I'm unsure, I always say so., and you noticed and pitched in. Hooray !
Years back in one of our larger groups, it happened that we ended up with a lot of TTC, pregnant and BFing moms. The internet is funny that way.. gathering can happen magically. The rest of us long timers stuck with them and learned along side. But.. we took most of the rest of our conversation to our other main group, wanting to not confuse the newer gals.
That was a fun time..all those new babies. :)
So it seems we need to sharpen our pencils here and add new mom sources as we go along. Between the two of you, Maglady and you, Your both well qualified to judge. I'm sure the information gathered will be correct, and from valid sources. Looks like opportunity to me.
Thank you !!!
{{{hugs}}}
Statically MMI has a better patient compliance rate. It *can* be taken once a day and work okay. Those that are capable of taking it in divided doses are able to have more stable thyroid levels throughout the day, and as a result they are able to have a lower maintenance dose. Less drug in the boy seems lie a good thing in my opinion. Some people are not able or willing to dose three times a day, so the MMI is a better choice for them.
Because of this statistic, doctors tend to go with MMI currently, and they have a bad habit of not judging our ability to multi-dose on an individual basis.
PTU has a shorter half life. 75 minutes. It MUST be taken every eight hours without fail. Those of us that do take PTU, quickly learn 8 hours feels so good, and if we miss a dose we feel it, making that a built in compliance system.
But.. there are people that just can't get it together, and they are told falsely by their doctor to take the PTU all at once, or twice a day. Fail ! It's never going to feel right, and the huge dose is very hard on he whole body, especially the liver.
But.. for those of us with high FT3 or current TED at diagnosis ( several experienced Graves' doctor agree on this, though one can not design a study clearly to prove it), are much better off with PTU, as it lowers the FT3..and fast. MMI does not affect FT3, other than the natural, slower process where as the storage of FT4 lowers, there is less FT3 being produced.
Both drugs work well, as long as the patient is compliant and the doctor has Graves' experience.
We need to be judged as individuals. The right drug varies by individual.
The eyes... antibodies cause TED, and when antibodies lower, the TED heals. ATDs lower antibodies when used correctly .
RAI increase antibodies.
Surgery may raise antibody levels at first due to the trauma of surgery, but when the patient is provided a CORRECT dose of replacement hormone, and is willing to modify their diet an lifestyle a bit, they have the potential to lower their antibody levels. this tends to happen at about five years post surgery..though some will have lower antibody levels much sooner.
TED has a beginning, a middle and an end ( the resolution phase). Surgery can not be done before the resolution phase, Other than emergency surgery if the optic ever is at risk. Since that is high risk, and will result in complications in all the future surgeries required, That's why when I hit that point, I chose to go on high dose steroids for a year. Steroids have plenty of risks themselves, and that year was miserable, but I did avoid the surgery.
All Graves patients have some eye involvement when precise imaging studies are done, but the vast majority never even are aware of it. Only 5% of Graves' patients have severe TED..but looking at these statistics from another view.. it seems 20% of post RAI patients have severe TED. I wasn't really surprised when finding that fact, as in the TED groups I have been part of over the years, it is almost exclusively post RAI patients that have surgery.
There are always a few post thyroid surgery patients in those groups, but very few ATD patients ever need surgery. It's just that rare that they have damage left after their antibodies remit.
When it does happen, like in Kathy's case, her results are predictable.. the minor surgery ( compared to orbital decompression) she needed was successful, and not only does she look great, but she is not having complications. So even though she was one of the few, rare ATD gals needing surgery for her eyes, her results are superior.
The normal course of events for severe TED surgeries, is a series of eye surgeries, all with risks of their own. This is why some people choose not to have eye surgery if their situation is tolerable as is. Again, individual choices .
My severe TED was partly my own fault, and largely my previous series of doctors faults. I became exhausted at being misdiagnosed with so many things, being told it was all in my head, and that a good vacation or the resolution of Peri-menopause would fix me. Year and years of that, as my Graves' waxed and waned. Eventually as my partner became ill, and he received his terminal prognosis, the last thing I worried about was my health.As my Graves' escalated, I remembered all the past doctors advice, and I waited it out, thinking this would soon pass as it had in the past.
That was a bad plan. By the time I was forced to deal with it all, I was " a classic case of Graves'...one the every nurse, medical student and who knows what the rest of them were. ...had the chance to see me, and check out my eyes, feet, ankles, heart beat, my lovely goiter, listen to my bruit, feel my hands... they always asked my permission, and it seemed like the right thing to do, saying yes...but eventually it turned out I had to start saying no to these never ending requests to be on display.
The result for me, is I became committed to healing, educating myself, and it all payed off, bucking the statistic that those patients diagnosed late and with so many complications, would ever heal.. hit remission, or have their TED resolve well. It's all about a good medical team and the patients willingness, IMHO.
The year on steroids allowed the critical time period when my optic nerve was in danger , to pass. When the steroids were weaned, my eyes did once again, swell more, but not as bad as earlier. All in all it was a period of five years to completely end, but my eyes are completely normal looking now. I do have a bit of scar tissue that prevent a complete swivel.. can't get a good look up under my stove hood. I twist my neck and look up, but there's a point where, does it really matter ? I just clean it best I can by feel, and do it often. LOL
I'm also very aware my distance perception is not as precise as it once was. so is that scar tissue or age ? At 40 years of age, I started the eye glasses thing. Went pretty much to tri-focals right off the bat, but my eyes changed so often it was tough and I had to switch eyeglass prescriptions all the time.. little did I know those antibodies were part of what was going on. Oddly enough, and I can't be sure the reasons, at 62 yrs now, I do not need glasses. I do use a pair of old drug store readers, the lite version, to read fine print on vitamin bottles and such, but I'm not having any problems reading the newspaper. Noticed that a few years back.
So the question will always be.. when did TED start ? Awhile back I found an old photo from my late twenties or early thirties .. I remembered that... one eye always opened WIDE at the flash of a camera..and I threw out any that showed it. That wide open eye is the one that was the worst open one during my TED years.
Maglady,
Your young, healthy, and diagnosed early. You have the chance I never did, to understand this autoimmune system situation. Take good care of yourself and TED is just not very likely something you are going to need to worry about. Be aware of the possibility yes.. but worry it will sneak up while your back is turned.. no.
This Graves' is all about our immune system.
IF.. worst case ... your eyes did become affected.. . with care it is very possible to heal and never need surgery.
(((hugs)))
Pam and Mag: As nurses we usually educate patients in a step by step manner. Like: with a little infected toe nail we do not start talking about possible ful leg amputation. But you got your full "leg amputation" speech here, Mag. LOL. But like Pam said ( in different wording): chances are that you just have a "nasty infected toe nail".
Mag, You made me laugh so hard! The drive-through? Hmmmm, pretty gutsy already, if you ask me. But standing in line at the bathroom? Bhaaaawaahaahahahaha. You are my hero. I bet you they were porter-potties too!!!! I just picture all these people looking at the contraption hanging from you boobies if by accident the cover blew up by the wind. Or just al these wondering minds thinking: "what is that sucking/clicking noise coming from these odd shaped breasts under that hideous moomoo?" (pun intended)
On a more serious note: Yes, my brain was fried on so many levels. I am lucky that I am a stay at home mom, and once a week I work in a urologist office and do his Urodynamics studies and occasionally a TUNA procedure. I set my own hours and patient load. I gave my self a bit more time per patient for a while and I informed my boss that for a while I would not be filling in to work in other areas of his office. I was so fried that I was afraid I would stick a Foley into someone's arm and an IV line in someone's HooHaa. I am Bi-Langual and sometimes would start mixing up the language. You are a VERY wise lady for having you meds double checked. Even more so with the little kids! Good for you!
Hey, and hyPO feels crappy too. You get this fog in your brain with similar effects as hyper. So another good reason to take it slow in finding your golden numbers. Try to resist the temptation to quickly change doses or take too high of a dose. Give your self some time to get through the transition phases and try not to get hypo, if possible. It has worked very well for me. The rollercoaster ride is worse than the "just riding it out" ride. It is discouraging and you have no control or grip on your progress. I have been hypo for a while, a while back and my MD wanted to stop me cold turkey. I resisted this with the okay of my Endo and went to 5mg (2.5 BID) and I feel close to normal although my numbers are in the low range of normal. I started yesterday with 2.5mg (1.25 bid) and so far I do not even have any transition symptoms. I started in early June and I am happy to say that I am very hopefull to being close to my golden numbers.
Talking about Drive-trough: You need to learn soon about the effect of diet on your thyroid symptoms. I think one of the worse things (diet wise) you can do for your thyroid symptoms is eat an Iodine loaded salty BigMac with Fries and a diet soda. The diet soda not a good idea anyway for the breastmilk. I can cheat a bit here and there in my diet again without getting a hang-over but in my not-so-good times, the best thing to do was eating wholesome and balanced both in portions and timewise. Most people here will chime in on that. When you are ready to inform your self on that, start a new thread and we walk you through that one.
Well, the husband is back from his hunting trip. Although I love this guy to pieces and he is the best husband one can have, it is so nice to have the nights all to my self to stay up late and watch Greys Anatomy episodes back to back and to Oprah Winfrey my self through this forum. I will have a bit less time now again because my normal duties resume too.
Good luck! And please take a picture when you go through the drive-through again with the milk machine. Post it on Mothering Magazine. Those hippies will get a kick out of that! (no offense, I am a wanna-be hippy my self)