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Viewing 15 posts - 46 through 60 (of 67 total)
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  • bradybunch6x1
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    Post count: 78

    Nancy,
    I thought that Armour was both T4 and T3, or is it just T3? I thought that Thyrolar was just T3. I don’t know but I was sure it was the other way around, maybe I have been mistaken this whole time. I hope you can tell me. I have been on Armour thyroid for over 3 years, and I guess I should know this.
    Thanks,
    Valarie

    bradybunch6x1
    Participant
    Post count: 78

    Thanks I will give it a try and let you know.
    Thanks again,
    Valarie

    bradybunch6x1
    Participant
    Post count: 78

    Hi David,
    I don’t want to give you false hope, we haven’t had this issue. I have had my daughter checked for growth hormones and hers are fine, but she is still really small. I’m not sure that you will find alot of people out here that have even had that type of testing. I would ask for another test, to see where that stands, because tested can be read wrong. I have had thyroid tested redone in a week, and them be way different. As for a good doctor, your best bet would be your current Endo. They deal with these issues, and if your Endo doesn’t really like them you can always ask him for a referral.
    Valarie

    bradybunch6x1
    Participant
    Post count: 78

    I have never had it before, but have been warned of it, due to lack of being able to close my eyes when I sleep. You should see your eye doc again. They may be able to perscribe some meds for the pain in there(they do have some awesome eye drops that make eyes feel alot better). Everytime I went in to have my eyes checked they would put some kind of eye drop in there that was yellow, so they could check the pressure, and put there little thing right up to my eye. That stuff was great. I would leave and wish I could have it all the time, no burning, no nothing, and it made them feel refreshed. I wish I had asked for some to take home. I didn’t find anything else that would help. Have you been putting in eye gel at night?
    Valarie

    bradybunch6x1
    Participant
    Post count: 78
    in reply to: What doc to see? #1070576

    Thanks Ski,
    You have been very nice to respond to my post. It is like a special kind of torture. I don’t know if I ever mentioned that my doctors that treated me during my pregnacy were planning on writing up medical papers on my pregnancy. I can’t wait to read them. I hope that they do, as they said they would. Otherwise they did alot of free Ultra Sounds for nothing….hee hee. It would sure be nice to blaze a path, instead of sitting around wonding if I will ever help anyone in my place. Anyway thanks again,
    Valarie

    bradybunch6x1
    Participant
    Post count: 78
    in reply to: pregnancy #1070592

    Hi Lisa,

    I would happen to be one of the mothers that has had a child affected with Graves during pregnancy, and I can say that we all have survived, and are still here. The Graves was well managed in myself, but sometimes it does happen. I can say that my children(twins)were a surprise as well, and that we weren’t planning on having anymore after our 3 year old developed Neonatal Graves, because we knew then we could have more with the same problem. Well we did, and there here, and they are a blessing. It is a struggle sometimes, but I think you will do just fine. Unlike alot of the people here, I was hypothyroid, so detection of the Graves was alot less likely. I think Ski has it right, there alot more people with Graves disease that have babies that are healthy, and they stay healthy, than the ones that don’t. I was told by my doctors that of the people that have Graves(mind you Graves disease is still listed as a rare disease)1 out of ever 80,000 will have a child with Neonatal Graves disease. With your levels normal your in the best shape to have a happy healthy pregnancy.
    Good luck
    Valarie

    bradybunch6x1
    Participant
    Post count: 78
    in reply to: Pregnancy #1070536

    Forgot to mention that I listed my post under Neonatal Graves disease.

    bradybunch6x1
    Participant
    Post count: 78
    in reply to: Pregnancy #1070535

    Kristi,
    Please make sure that this Endo does check your daughters TSI now, since it is the beginning of the pregnancy, they need to get a baseline for this antibody, so that they know if it is rising or not. This is very important in a pregnancy. This can tell them weather or not they need to be doing more monitoring of the baby. I have posted on here just recently about my pregnancy, and I hope that you find the chance to read it. It is pretty much what can happen if you keep the doctors doing what they should. Since your daughter is pregnant she should also be seeing a specialist for her pregnancy, a Maternal Fetal specialist. That way they can monitor her closely. She is a high risk pregnancy. You might have your primary doctor refer her to one. That is what is best for both her and the babies outcome. The specialist was able to manage both my thyroid levels and the babies, without an Endo, so that to might be possiable for your daughter(but I’m sure is not always the case). Anyway good luck to you both, and if you have any questions, I will try to help. Since I have been down this road before.
    Valarie

    bradybunch6x1
    Participant
    Post count: 78
    in reply to: What doc to see? #1070574

    I think I am getting a bit frustrated with the doctors, Kinda like they all say, hmm well it has to be something else, but no one can give me an answers, so they just give up. There just isn’t enough research into this disease. I actually have thought about having Ava’s doctor send in a referal to the NIH undignoised program. The problem with that is that they want people that don’t have a dignoises, and we had one when she was first born of Neonatal Graves disease, and now all these other doctors are saying they don’t know what she has. I know they do research up there for rare diseases, so they could possiable give me the answers I am seeking, but they may not even take her, as there is only a few alotted slots for people each year.
    I wanted to include this as I thought it might help you see where I am coming from when I say that the doctors don’t know. This is the letter that I was sent from our Genetics doctor that was sent from the displasia registry. It will help you understand my frustration.
    The first one came in and said Based on the information that we received our preliminary diagnosis is that this is an unclassified syndrome. We hope to finalize this case during the next few weeks. So that wasn’t the final letter, this one is.
    Enclosed is the radiographic report on Ava. As you can see from the enclosed radiographic report, the radiology does not give us a clue to a specific diagnosis in this case. It is possiable that this could represent some unusual form of craniosynostosis syndrome.(I am leaving out the parts of the letter that are not pertant)In looking up some of the clinical symptomatology in association, which are weak clinical signs, I doubt that this represents rubella syndrome, although one can see hyperthyroidism and thyroid disfunction at least, with craniosynostosis in that entity. There is an article I would refer you to by Salerno in the American Journal of Medical Genetics, volume 120A, page 389, in 2003, of a multiple congential anomaly syndrome that has some of these fetures. Perhaps a good dysmorphologist might be able to help you, although some of the dysmorphology obviously is due to the craniosysnostosis and hydrocephalus that has occurred.
    Here is the kicker, the doctor we see here in NM is a Genetics dysmorphologist, and he is stumped.
    Can anyone else here see that they are looking at the Graves, and then dismissing it.
    Valarie

    bradybunch6x1
    Participant
    Post count: 78
    in reply to: What doc to see? #1070573

    We have actually been to see several doctors there in Salt Lake in the passed when the twins were born, although, it didn’t help much.. I had a really bad experience with one there. He was a myofacial plastic surgeon, and was suppost to take care of Ava’s Cranio, and did a CT and told me this"Well she has water on her brain, but it could be normal for her". Turned out I got a second opionion and it wasn’t normal at all. Now she has a VP shunt in her brain.
    We have explored things with the Genetics doctors, them wanting to rule out all types of Genetic syndromes, and what we have come to find is that they to are stumped(we have seen one here in NM, and one in Idaho). We have done extensive testing and everything has come back as normal. They have even had Ava’s medical things sent to Cedars-Sinai Medical Center, where the displasia registray is to rule out a type of dwarfism, and it came back, as these doctors don’t know. They had us do a full body x-ray, and that came back with advanced bone age. Other than that they say it is a normal x-ray.
    I am starting to think since neonatal Graves is so rare, they haven’t done enough testing to rule out alot of these symtoms. I have found research that has linked each and everything Ava has to Graves. From the Cranio to the hip, to the advanced bone age, as well, as the developmental problems, the only thing that seems to be left out is the short stature. But I have spoken to a few other moms that have babies with this, and they to seem to have small children. I don’t see enough doctors that are Peds Endos, that have much background in the US for thyroid. Our doctor in Idaho did(although he was actually from OR). He helped establish the guidelines for lazy thyroid in premature infants. So I don’t know.
    It seems every were we have turned has got no answers.
    Valarie

    bradybunch6x1
    Participant
    Post count: 78
    in reply to: What doc to see? #1070570

    I live in a small town, and I live in NM, which at this point has come to disappoint me when it comes to finding specialists I know that our doctor in Idaho was a thyroid specialist, but we didn’t get to see him but once right after the girls came home. I’m wondering how I can find a doc for her that is a thyroid specialist. Does anyone know of a group that they would be in? Other than Peds Endo. Man what a mess. Ava’s primary said not to see the Peds Endo here, as all of her thyroid levels, and growth hormones, and cortizol levels came back normal. This stinks.
    Valarie

    bradybunch6x1
    Participant
    Post count: 78
    in reply to: Pregnancy #1070532

    I just wanted to say, that I have been told by my doctors during all the times I was pregnant, that TSH is sometimes elevated during pregnancy, and that they never treated me due to TSH levels, they said I would have med changes if my FT4, or three levels were changing. In pregnancy you will find that false elevation of TSH does happen. A good Endo would let you know that. I to would also keep in contact with doctor, and if not being treated by a thyroid specialist would also do that. Your daughter also needs to have her TSI tested at this time.
    Valarie

    bradybunch6x1
    Participant
    Post count: 78
    in reply to: Thyroidologist #1070903

    Oh thanks, I have done that once before. It worked out really well. Our doctors in Idaho were trained by me. That is why they were consulting with the Thyroidologist in Salt Lake, and why they were actually able to find out that my twins had Neonatal Graves disease at 18 weeks gestation. Oh the modern technology. With them willing to learn and my willing to learn we tought each other things. They were great. I just wish I didn’t have to start all over again….it is so hard. Thanks again,
    Valarie

    bradybunch6x1
    Participant
    Post count: 78

    Hi Jennifer,
    I myself have a son that was dignoised with Graves at age 11, although at this time it is not calling for medical treatment. As for the rage, I have seen that a couple of times in him, and he has always been very passive, which is what had caused my concern to have him tested. He is really emotional, up and down. He also seemed to start showing signs during school when his grades went from A’s and B’s to C’s and F’s. I took him in talked with the doc, and then she desided to have what they called a thyroid panal, which was for the antibodies as well as Free T4 and Free T3, and TSH. Turns out his antibodies were elevated and his TSH and T3 were slightly abnormal. The docs never did start him on meds, said we should wait and see where they went. After 2 more tests in 6 months we were told ok, we don’t need to test him again for a year. Well it’s almost time again. So we shale see.
    Valarie

    bradybunch6x1
    Participant
    Post count: 78
    in reply to: Need assistance #1070847

    Hi Roxanne,
    I checked and there is a thyroidologist in Arizone, check the thyroidologist.com site, and even if you can’t see that doc, maybe he can consult with your current doctor.
    Valarie

Viewing 15 posts - 46 through 60 (of 67 total)