Forum Replies Created
-
AuthorPosts
-
in reply to: Thyroidologist #1070901
Thanks for the response,
I just checked out the top doc site, I guess we don’t have any good ones here in NM, as some aren’t practicing, or they have moved out of state, or have been removed from the list. This is going to be fun, I need a good doctor that I can train I guess, kinda like my last one. I have to find me a new young doc. Darn it, the hard work will begin.
Valariein reply to: Newly Diagnosed W/Graves & Endo. Visit #1070886I would be so totally disgusted with a doctor if they thought for one minute that they could treat me that way. That is disgusting. I think this Endo has crossed then line, in all the aspects that he has stated. To make all the assuptions he did was wrong, and to put the fear of God into someone he doesn’t even know is even more disgusting. This Endo knew why you were being referred to him, or he wouldn’t of taken the refferal. This man apperently needs an attitude adjustment, and the best thing to do is find the person that is over him in his practice and have a nice conversation with them. Then go onto another doctor.
As far as the leg thing I have been there and done that, it was when I was hyper and hypo, so who’s to say which way you have gone. The eyes can come also when hypo, as mine did. As far as the goiter though, if it’s worse you do need a Endo, or someone that knows what they are doing. Find out if you have any friends that have seen a good Endo, ask around, check out some web sites for them, there are many out there that don’t feel as this Endo did. HE IS WRONG about treatment. Yes there isn’t a cure, but there is treatment to help with the problems that your having.
I would like to suggest you see an orbital surgeon for your eyes, as they will be able to treat the TED. You could see a different type of doctor, but if your vision is as bad as you say, then I myself would make that my first stop. I have seen an eye specialist and if you have started to loose vision then they would refer you to an orbital surgeon anyway, so don’t waste time get there. It is important that you do that so you can save your vision.
I hope that you do find a doc, and in the mean time check out a few sites while your doing it, and learn about your disease, and even some books, they have a list of some here that would be to your benifit to read.
Valariein reply to: Babies and GD #1071038Here is a bit of info. If your child was tested for Graves disease after birth, that doesn’t mean that he is out of the woods. Babies can sometimes test normal at birth and then about three weeks or later test positive for Graves. So the question now is this, have you had him tested? Mind you another thing is that alot of people do go into pregnancy with Graves and actually can go into what is a type of will you say remission, so you may have never needed the PTU anyway, who knows, but now being of your meds during that time has I’m sure made it really hard to leave out. Has your levels been checked? I am like alot of other people on here, your not a bad mom, your streched to your limits and sometimes enough is enough. Sounds like you need a hand, I’d be calling on my friends to help me, or husband or someone. You are indeed in need of a brake!
Hope you get threw this all very soon.
Valariein reply to: Graves Dermopathy – anyone?? #1071184I wish I could be of some help, but I’m not. I’ve suffered from it for over three years now. My doc gave me all kinds of meds, and it hasn’t helped me a bit. Mine is so ugly. It has started in the tops of my feet too. I couldn’t imagine it going to the toes, I’m praying it doesn’t get that bad. I have huge large bumps on my lower part of my legs going to the back, and then the shins are sold as a rock. It does’t bother me, but I have found that it burns alot faster than the other skin on my body…..has anyone else noticed that?
ValarieHi,
Just wanted to say been there done that. I was started on the slippery slop of steriods for my eyes as well, it helped but when I would start to come off of them, it would flare again. I was told that I could have orbital decompression or radiation to my eyes. I was told that I would have to wait until the eye disease was out of what the doctors called the hot phase before they would do anything unless there was optic nerve damage going on. So I opted for the radiation. It was easy, painless, but did take some time. I was given a 50% chance that it would help. So I went for it. The up side it stopped the progression, the down side it didn’t make it look better, and I still had to stay on steriods. I also got a small infection in my eye, that healed with antibiotic eye gel. So I would suggest this treatment if you can find a doc in your area willing to do it. I ended up having to go to a Cancer doc for my treatments but it was worth it. I was on steriod for over 2 years, and the doctor ended up having me on what was considered a toxic dose to help with the TED. I had this so bad that the vessels in my eyes would burst. I also would recommed eye drops, cold or hot compresses, for your eyes. They helped alot too. I tried the cold first, which is what my doc recommened but turned out the hot ones worked best for me. I’m glad that this part of it is over, at least for awhile I pray.
Valariein reply to: I have a question about test #1071052Hello Connie,
I would like to say hello, and let you know that you are not alone in this. I myself have an 11 year old that has Graves, although he isn’t actually having to take meds at this time. I would like to give you some advice about dealing with this in your son. Please do alot of reading about this it will help you find the answers, weather on the internet or books. There are alot out there. Please don’t just rely on your doctor, as sometimes they don’t make the best choices for us. Then please make sure that your son knows what is going on, and how he can help to make things better, such as what he should be eating, and when he should take his meds, maybe have him write in a journal what he is feeling. This helps when your trying to manage meds sometimes. Make sure he knows that when starting on his meds he tells you if he has a sore throat….very important, so you can call the doc if that happens. Your not treating you and it will make this disease alot harder to manage since you can’t tell what is going on. I hope and pray that you will be one of the lucky moms that ends up with thyroiditis or something instead of Graves. Watch the eyes in your son, as well as his neck, if they appear larger than usual, make sure the doctor knows this. The eyes may start to hurt pretty soon, since this is happening before puberty, so keep some eye drops handy in the bathroom just in case.
Valariein reply to: Neonatal Graves Disease #1071097Hello again,
I tried to respond to your responses the other day, but my server went down and was down until this afternoon. I wanted to answer Ski’s question about the antibodies, yes, you are right the antibodies once passed out of the babies blood streams cause there thyroid levels to go back to normal. Although they don’t have Graves antibodies, they still can suffer from the effects of the Graves disease, as our children are. All three girls have large eyes, and have been dignoised with lid lag and lid retraction. Ava has developed Craniosysnostosis from the Graves disease, as well as having developmental delays. She also is very small, as is Ella. This disease may seem like not such a big deal, but in an infant it can cause death if not properly dignoised and treated. It’s important to make sure that while pregnant that you have your TSI check at the beginning and middle and towards the end to make sure that the antibodies are not really elevated.
Thanks,
Valarie -
AuthorPosts