[bradybunch6x1]

in reply to: Neonatal + Graves Disease Question #1067469

I can only tell you how it has affected each one of my children. I have done alot of research on Neonatal Graves, but have never come across any research that has been done on it, more like things just telling you what it can cause. So I am not sure that I can help, although since I have three children born with Neonatal Graves I can give you some information on it, from the stand point of that. I can say that the link I left on here before that is pertaining to Neonatal Graves, will tell you alot, but all in medical terms. It was a great find, and honestly it is really the only thing I have found on the web that depicks the real picture of what this disease can do to a child that is born with Neonatal Graves.
If you would like you can send me a message with any questions that I may be able to answer for you. I can also point you in the direction of a great doctor that may be able to help he’s a perfessior at a University, and is a Peds Endo, that specialises in thyroid disease.
Valarie

[bradybunch6x1]

in reply to: New to here, Graves, and life #1067652

I have a family member that was dignoised with Graves while he was still in high school, and he stayed on his parents medical insurance all threw college. Once he did graduate from college, he did have to provide insurance for himself, but at that point he had already found a job with insurance, and since he had prior coverage for a continued 12 months didn’t have to worry about being able to use his insurance.
We have two insurance companies, and just started one of them, they have pre exsisting clause, but due to 12 months of prior coverage, we are covered. I myself didn’t have 12 months of prior coverage, so my insurance won’t cover any Graves related charges, other than my meds.
Valarie

[bradybunch6x1]

in reply to: Hearing loss in our daughters #1067619

I started to do some searching on here and ran across a site that does list something about hearing loss in someone with hypothyroid(mind you neither of our daughters are hypo), but thought that it might interest you to hear that. If you like I can send you the link(it doesn’t say as to why this is connected to this), but maybe you can find some more answers threw your doctor(if they are knowleadgable about it).
Valarie

[bradybunch6x1]

in reply to: Radiotherapy #1067665

The antibodies that were active during my treatment of radiation were still very elevated during and after that time. I started to develope issues with pretibial myxedem right after that, and it continues to this day. I’m very thankful that it stopped attacking my eyes, as I didn’t want to go blind. I would much rather have issues on my legs, that I can cover with pants(I was so vain when I was younger, as I always thought some of my good qualaties was my legs(which are ugly now)and my face(which I can’t stand to look at now because of the bug eyed look). I have had so many issues with surgeries that I have not proceeded with any type of surgical treatment, and honestly don’t think I will unless I start to go blind. Have you given any thought to having the surgeries?
Valarie

[bradybunch6x1]

in reply to: Sweaty, stinky feet #1067953

You know he does get athlete’s feet off and on, but mainly it is the awful smell. I think the deoderant seems to be doing the trick. He has been using it for a little longer than a week and I can now stand to go into his room. Also his feet are not to the point when he removes his socks that you want to get sick. The deoderant is unsented, and works really well. I found it at our local Safeway, it cost about $3.50(which for that store is pretty reasonable), and I think it was the best purchase we have made for his stinky wet feet in along time. He doesn’t like to put it on, but does like the fact that it makes the smell go away. Wonderful product.

[bradybunch6x1]

in reply to: New to here, Graves, and life #1067640

Hi Roberta,
Ya know being a parent to a child with this disease is pretty hard, but my children and I are lucky, I found out first that I had it so I understand it alot better than most parents with a child that has it. My 12 year old son has it, and I have found that inorder for him to know how to handle this part of his life he can not just go around saying I have a disease I know nothing about. He is informed. He knows what is going on, yes even at 12. With the explanation that you have given me, it seems that you and your mother both may need to start doing a bit of research, and asking questions. Although you are a minor, you also are the patiant, and the doctor does need to explain to you what on earth he is talking about. Your the one when you turn 18 that will be dealing with this disease, not your mother. You need information, and it seems your trying to find it. Check the section on books here, that may help you, also see if your mom will take the time to check out this web site, and ask questions. She as well as many other people on here are having to care for someone with Graves, and it isn’t the easiest job in the world. It might help her understand a bit more about what your feeling, and she may also be able to understand what you may need from her in order to help you.
Valarie

[bradybunch6x1]

in reply to: Sweaty, stinky feet #1067951

Just wanted to say that we have given my son the Toms deoderant, and it seems to work, but he is also using an althelets foot spray, so between the two it is starting to help. Plus we are starting to take his shoes and set them outside overnight. The smell on his feet isn’t as bad now when he is taking his shoes off. I make him put the Toms all the way across the bottom of his feet, not just dap it on. Like you would if it was an armpitt.
Valarie

[bradybunch6x1]

in reply to: Radiotherapy #1067663

I had radiation on my orbits. I can say one thing about that treatment, it didn’t make me look better, but it did seem to help stop the progression of my eyes bugging out. I also had to continue on steriods for almost another year after that treatment. I did really well with the radiation, but developed an infection in one of my eyes right after the last treatment. I went from the treatment to the eye doctor, because my eye lid was drooping, and was on fire(different kind of burn than from the TED). I was given antibiotic eye gel, and poof three days later, it was gone.
Did they measure the protusion of your eyes? My doc did before and after, with almost no change, I think it was like a millimetter change.
Valarie

[bradybunch6x1]

in reply to: Recently Diagnosed with Graves #1067774

Koop,
It usually isn’t this long until others are jumping in to reply, but most of the people are at the NGDF confrence. So I will do my best to help answer some of your questions. I can answer the ones about pregnancy, and a few others. Pregnancy is possiable during treatment of Graves(While on PTU, most doctors don’t recommend methimazole during pregnancy due to side effects on the fetus), but is not recommended until we obtain normal thyroid levels. When we are pregnant it is very important to have normal thyroid levels to maintain a pregnancy, as well as have a health happy baby. If you have RAI it is not recommended to become pregnant after the RAI right away(most say about a year), it will help you get your thyroid levels within range during that year. As for the surgery, not until you reach normal thyroid levels, which is usually less time than a year. As far as gaining weight, I am not sure about that, I can tell you what my doctor told me years ago. I was told I would not gain it back unless I started to go hypothyroid, which happened, but I know that this is not always the case. Some people actually start to gain weight while hyperthyroid, so I wouldn’t hold this as true for everyone. I have gained weight while being hypothyroid, but I can also say that not everyone does this. This disease isn’t always the same in everyone of us, and so it’s effects effect everyone differently.
I can understand the not knowing how to cope with this disease, as it is alot like trying to guess what will happen next. There is no for sure thing when it comes to this disease. You could be fine, and have no problems after all of this, or you could have a slew of problems. The one thing that I know is that you should start to educate yourself about the disease now, so that if your faced with any discisions down the road, you will know what to do, and were to turn. This is a great place to start. They have a list of recommeded books on this site that I think you may find helpful. Also I would like to tell you not to let all the talk about the horriable things this disease does worry you to much, as most of the people on any site about thyroid disease that are on there, have had, or do have a problem with the disease, or they wouldn’t be on there looking for answers. So the ones that are doing really well usually are the ones out there doing something else other than looking at thyroid disease groups(be mindful of that).
Good luck,
Valarie

[bradybunch6x1]

in reply to: TSH at 85 Today – How quickly should this start to respond? #1067905

I ended up with a TSH of 89 after I had RAI. At that time I was told to have my levels checked every two weeks after starting on meds until my thyroid was brought back into a normal range. For me that actually came down in about two months. I can’t imagine how you can even think at this time, I remember when I got so hypo back then, I couldn’t even remember when I was signing my name were I was at in it, and would have to stop to think what came next in my name. The doctors told me they were shocked I even managed to get out of bed to go to work every morning, much less take care of my two children. Good Luck getting those numbers back to normal.
Valarie

[bradybunch6x1]

in reply to: Sweaty, stinky feet #1067947

I am a member of a group for parents that have little people children, and have found that this is a commen problem among people, and remembered hearing that using a deoderant on there childs feet, works well, but they were also told to avoid deoderants that contained aluminium products, the doctors said that they recommended Tom’s natural deoderant as it doesn’t contain these products. There were 3 people that stated that this did the trick. This problem actually has a name, don’t ask me to spell it, but I have run across it several times in reading things about stinky, sweaty feet. This may actually require a doctor to help with this condition. I actually have been thinking about taking my son in for this same reason, as his room smells just like his feet. Oh what a smell…..mind u he has Graves. I don’t know if it is related to the disease, but it does seem to be a common problem for the average joe off the street.
Valarie

[bradybunch6x1]

in reply to: Make up and eye question #1068495

I guess I am like you then, my makeup days are pretty much over, it’s just with having daughters, my oldest seems to think I should get up every morning and put it on like I did years ago. I have tried to explain to her that I can’t but she doesn’t seem to understand. I think alot of it has to do with a really vain sister-inlaw, that told her that you need to get up and get dressed, and do makeup, and do your hair every morning before leaving the house. I have been getting up brushing my hair(I have never really curled it, since it is as fine as babies hair)and that is it. I actually don’t even like looking at myself anymore because my eyes are so different than they use to be, so why bother I guess with the little bit of makeup I can wear. I am very lucky, as I have always had a good complection, so I really don’t need to wear base anyway, but with blonde hair, you can’t see my eye lashes, and makeup tends to bring out my blue eyes. I guess one day she will grow up and understand that not everyone wears makeup.
Oh and thanks for the replies, it’s nice to have other people understand what is going on.
Valarie

[bradybunch6x1]

in reply to: Need Help!! #1068504

Michael,
I myself was a basket case during the few months that I was trying to get my thyroid under control, but I am very concerned about your wife, it doesn’t sound as though she id doing well at all. If it were my wife, I would be calling the doctor, or even be taking a trip to the ER for the type of behavior that your wife is experiencing. As you said it is way beyond thyroid storm(which it could very well be). Delusions are not typlical of Graves, but if thyroid storm is the cause, then she most certainly needs a doctor. If the doctor doesn’t sound concerned over the whole suicide thoughts you might want to try the ER. If you have read indepth about thyroid storm, you know that it can actually cause death if not treated, so please take your wife in as soon as possiable. I pray that you will get the help you need, and are able to confort your wife in this heart wrenching battle of this disease. I myself would also be trying to find another care giver for your child during this time, as it seems your wife is very unstable, and unable to perform her motherly duties right now. I was raising two children by myself at the time I was sick, and found it almost impossiable to do that on my own, with the help of some great family friends I managed. It’s hard to even think straight when dealing with this disease at times, I myself went threw times when I couldn’t even remember how to spell my own name. If you can’t remember things like that then think of how it must be to take care of a toddler at this point. My prayers are with you and your family, and I hope that you can get your wife the help she is so desprately in need of at this time.
Valarie

[bradybunch6x1]

in reply to: GD and Genetics…do we really know yet? #1068544

Hi Sue,
With our twins it was pretty easy. I pretty much pestered my doctor to consult with a Thyroid specialist, and they told the doctors what tests to run, So we had TSI checked every other week, slowly watching it rise. Then they also were doing Ultra Sounds, I had one every month until about 18 weeks from then on it was every week. That showed that there heart rate was elevated, as well as that the thyroid was also very active(which I have the US of this if anyone is interested). They also measured there goiters which were actually quit large. We even had a CT or MRI(I cant remember which, sorry) of there air way while I was still carring them, to see how well they would be able to breath once born. Then after all these test other than the CT or MRI was done, we had to have fetal blood cord sampling done, to see how high there thyroid levels were. They could only get to one babies cord, but that was enough, as it showed at 25 weeks, that we needed to start PTU, because the babies thyroid levels were six times higher than normal.
With Faith, they didn’t know she had Neonatal Graves, but knew that her heart rate was over 180 beats a min, and they couldn’t figure out why, they also found that she had a low platelet level, and didn’t know why. They didn’t know Faith had Graves until she was 14 days old, when the doctors had her in a drug induced type coma, to keep her from having a stroke due to the heart rate. They told me that they were going to do a thyroid study, and wanted to explain what that ment, and I stated "I know I have Graves." The doctor put a rush on the test at that time, and in a few hours they had the results. The antibodies were elevated, and her TSH was suppressed, they never did tell me if they tested anything else, those were just what I remembered them mentioning.
So I guess you could say, TSI testing over 500(as the doctors say)mine was over 800, Ultra Sounds, and Blood cord sampling, and thyroid tests for the babies. Having a great doctor that knows what they are looking at when it comes to an Ultra Sound is very important. We also learned that one of the twins had stopped growing from the US.
Valarie

[bradybunch6x1]

in reply to: GD and Genetics…do we really know yet? #1068540

I myself wonder about all this, but have found that all the Genetics doctors that we have seen for Ava(which is a total of 2)haven’t really any knowleadge of Neonatal Graves disease, which actually shocks me, since I was told that the Genetics doctors deal with more complicated cases, and are suppost to be able to arrange care for children who require multiple doctors(which I also found not to be the case). I wonder myself, because we have 3 born with Neonatal Graves, and a 11 year old with Graves, and myself. I only have two other relatives with any thyroid issues at all, one of my mothers sisters, and one of my dads nephews. I did however have a grandmother that died at an early age of cancer, and looking at pictures of her, it seems as though she had TED. So I wonder myself about the Genetic factor.
Valarie

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