Forum Replies Created
-
AuthorPosts
-
in reply to: Insomia relief? #1061221
I tried it, did not help at all. But others have said that it did help a lot. Because it is not FDA controlled, it has been tested, and a stated 3mgm tablet does not always have 3mgm in it, sometimes more sometimes less. It is OTC, might want to check it out, try it. I take trazadone for sleep, 100mgm. I know people who go right to sleep with 50 mgm. It is an old time anti-depressant, which is not used as much now [b:28cwrodp]because[/b:28cwrodp] of the side effects of sleepiness. For the sleep deprived group, sleepiness and sleep is a desired outcome!! Not a harmful one, I don’t think habit forming (except liking the habit of getting some sleep.) It is an RX drug, and super cheap. Talk it over with your doc. Sleep deprivation is awful. I also have Ambien for those "special times" when I must get some sleep. My understanding is that Ambien can be habit forming. Frankly, I don’t really care, except that I understand that like other drugs, your body can get used to it, and its’ effectiveness decreases. That is why I have it as an insurance policy med.
Shirleyin reply to: TED Lower lid surgery,graft from hard palate #1169388Unfortunately, yes. I have been to three different medical centers in the U.S., trying to avoid this surgery. I have severe TED, and my lower eyelids are extremely retracted. i explored it as much as I could, and found the rejection rate of artificial graft material unacceptable, and the outcome not so good.
I have had orbital decompression (resulted in not being able to completely close my upper eyelid, strabismus surgery, which was wonderful, and upper eyelid surgery, which helped decrease my exposure to my cornea a little bit.I already have to wear sunglasses all the time, and artificial light is already excruciatingly for me. Tell the person, if you see her/him again, that I wish the best to her/him in some success in her light sensitivity. A big visor really helps.
ShirleyHi, just to clarify. THat was not the question Becky asked. I think my posts addressed her concerns and her questions. Here is one reference on the subject. I also encouraged her to check this out further, asking this question.
http://www.medscape.com/viewarticle/584576_4 It is from the journal THyroid.
The more recent studies, as well as this one, state that administering of steroids in conjunction or before RAI, reduce chances of any eye involvement. I think Kimberly has a more recent reference. This study was in 2008.In my posts, I also addressed the relationship of Graves’ and TED. I am living proof of that, having developed TED decades after I initially had Graves’ diagnosis.
ShirleyHi Becky, Hard to know all the variables that are associated with each choice. Lots of times, in all surgical and some medical treatments, the variable is geographic. Or an endo recommends one treatment over another, because where he trained, one was more predominant. He/she are familiar with it.
I think there are some things to consider when choosing each option. Specifically for surgery, which I chose, you need to be able to find a surgeon who does plenty of thyroidectomies, maybe 50 a year. I think that is the number we heard at the conference last year. For me, it seemed the fastest way to MOVE ON! So it was right for me. And for no reason at all, I was not excited about RAI.
And that tends to be in metropolitan areas or at academic institutions with major medical centers.You sure have time to check it out, and it really does help to hear the experiences of others, and their thought processes toward that. Many, many of us have agonized over their choice. Once they made it, the big burden of decision was gone, and in almost every post I can think of reading, people were happy with their decision. Probably the biggest caveat I can think of, is a doctor who insists on one option, and does not present all three treatment options. The pros and cons are pretty much up to us
You can argue convincingly for or against any of them. IT’s all about you. The exceptions depend on access to good people, and on rare occasions, the surgical option is the one that must be the choice, usually for extenuating circumstances, which,, of course the patient needs to thoroughly understand.I am a big proponent of 2nd, and even 3rd opinions. It is quite an experience, to hear a polar opposite view, or even a balanced one, on a choice you might like, but have been told NO by your endo.
Hope you get more responses.
ShirleyI am assuming you know there are three treatment options. ATD’s, RAI and surgery. Most people make their choice based on their own personal thoughts and feelings for/against the options.
I think the right answer to you title question is, that RAI will not always lead to TED. Having said that, any of us can develop TED at any time because we have Graves’. That is over a lifetime.
ShirleyHi, I am glad you are feeling better with treatment. I imagine someone will answer your post who has had RAI with no incidence of TED afterward.
I took some time just now to look, but could not find, the latest guidelines for RAI which address this subject. In summary, it states that there is an higher risk of TED in some degree after RAI than after a thyroidectomy. IT also states that this might be alleviated or deceased by administering a steroid before the RAI. But I think this is now evidenced based information.
Of course this does not preclude people having RAI with no eye issues, or very mild symptoms. And I think the whole subject refers to the short period after RAI.
Kimberly had a good post and reference about this, but I tried all combinations of terms in the search engine, could not find it. So hope she sees this post.Of note, TED can appear anytime after we have had Graves’. Even decades, as it did for me.
Shirleyin reply to: Coping with rage #1169266It is my experience is that I regarded ATD’s as a new lease on my life, my mental health, my ability to be a good new (breast-feeding) mom, and my physical health. In my own experience, itmwould be like consciously saying to myself "I choose to feel like like crap, have uncontrollable fits of anger, life is hell, and I want to be like this."
I could not get on them fast enough. I did get these symptoms after having my baby, all I wanted to do was to turn into a rational, normal person again.If I were in your situation, I would beg for the ATD drugs. I would want them if I had Graves or thyroiditis. Not sure how old your child is, it really makes no difference, so if you use the search engine on this board to read other posts about feeding your child while taking ATD’s I think you would be very reassured on this subject. Not sure where you live, but a pediatric endocrinologist is a good resource to discuss how to be sure your baby is doing well.
You are not well, whatever the reason. I wish you the best as you agonize over all of this. I would like to remind you that it is very challenging to think rationally when we are hyper. It is also called thyroTOXICosis, and it is a toxic and dangerous for our bodies.
I think you already realize that this a terrible situation for your little girl. Perhaps this a good time for you to see if you can find a nice, nurturing person you can trust to be with her some of the time, I did this when I was such a nutcase before The ATDs kicked in. I lived in student housing at this time, and I asked other moms to take them, bring the baby back so I could nurse him, give him love and bond with him, which is so critical to growth and development.
Please understand that I am telling you MY experience.
I do think you need to realize that you are fragile right now. having said that, there is another small person in your life, so maybe you don’t have the right to have a non negotiable stand based only on your thinking about all of this.
And, all fo this takes way more time than we want it to take.
There are good articles on this site for you to read so younarenempowered with knowwledgein reply to: Decompression/Sinus infection/bleeding #1169282I think the reason you have not gotten an answer to your question, is because I and others are not sure what you are asking.
So, I’ll tell you what I know, and my experience with the surgeries you mentioned.
1. If you are referring this meaning you are having these symptoms 18 months later,years later, no, I don’t have them now.
2. O f course I had a very small amount of slightly blood tinged (pink) tears after the procedures you mentioned. This was mentioned in the written and verbal post pre and post op instructions. Not a complication at all.
3. After my OD, I did think I had a sinus infection, but I didn’t. 8 months after the OD, I still feel I have a stuffy and sometimes clogged up left nostril. I find anti inflammatory nose drops help, but steroid nose drops do not help at all. there never has been any infection.
shirleywelcome to the board!!!
I Agee with all that everyone said in the prior posts. Do find an eye doc familiar with TED, a neuro/ eye doc even better.
I am a health professional, but this is not my role on the board. But I feel very comfortable stating that diuretics are very complex, and can really be dangerous. There is much to know and understand about them. There needs to be a good indication, with very careful monitoring of labsRegarding your eye symptoms, I can tell you that my experience with TED began exactly the same as your symptoms. nd it really HURT a lot to look up. AS I look back, one of the first things I did when my eyes got so uncomfortable, was to become a big fan of cold washcloths and cold compresses. it felt SO GOOD!!!also eye drops.
I hope you can ask around for a good eye doc. If you live in a small town, it is not likely that there is a neuro/eye doc, If you are in or near a metropolitan center, and/or a university, you will probably find one. when/if you call, be sure to describe your eye symptoms. sometimes, insurance or the office may require a referral. Like endos, their practices are super busy.
shirleyAshley, what a great post from Laurel!! I do wish all of could meet someday. wonder where the next conference will be? I love to go to Boston, but it won’t work forme this tear.
Laurel, my daughter was eating steak, salads ,etc., but she would have a little nip of breast milk at night or when she fell down, or when her brother tormented her too much!
She began to call it "milk factory!"
ShirleyI suggest you take a couple blood pressures, check your pulse. sometimes the labetalol dose may need to be decreased.
when you call the doctor about methimazole, report your vertigo, too. as Bobbi says, there could be several different causes.
The semantics of the words dizzy, vertigo,can be confusing. It is helpful for the docs to have you describe how you feel (room spinning around you, or woozy and dizzy, etc… ) Bobbi mentioned several possibilities. The important thing is for you to feel better. And continue to be a happy new mom safely nursing your baby. that is all possible, but you and baby need to be followed closely by your respective docs. Is it possible to have the endo and pediatrician and you to have some good
communication set up during this time?
Congratulations on you sweet baby. I was on Tapezole, breast reding, for a long time until I had my thyroidectomy,, which was my treatment choice. the only time I did not nurse him was the day of surgery and for 24 hrs. After, while the anesthesia was out of my system.in reply to: Deciding to have a baby #1062800Ad responding to the message above addressing Georgest’s post, Theo other treatment is surgery, which is the treatment I chose.
a suggestion for your mom, Georgeste, is for her to ask her doc to change to another brand of thyroid hormone. It is not supposed to make any difference, but in my body, it does make a difference. I am on Synthroid, which is still more expensive, but when I changed to generic, O got all out of whack with how I felt, and my labs.in reply to: Just Been Diagnosed #1169422My gosh!! what a disappointment. You don’t want this doc anyway, if he tells you you do not have issues(symptoms)
. so glad you jumped on this right away. Are you seeing endos?
Of course we are not medical professionals, but as you probably notices from this site, people frequently send their labs. do you have your own copy? I suggest you begin to keep a file for yourself. lso, always sign a Medical Release of Information form, always available at the front desk, have the labs and the dictated visits of what the doctor wrote and said about you.Of course you have symptoms, and an enlarged thyroid. I hope you find a doc ASAP. Which can be difficult.
the labs matter, but the PERSON and their symptoms Re equally important. would the original doctor take care of you?
Keep a record of how you feel, do take your pulse , write to say what it is, your BP too, you can get one at the drug store.
Are you in the military now? sometimes you have to push hard to see an endocrinologist who understands Graves’ but they all shoul and do know the basic, and so should a primary do. Or an internal medicine doc.
It is hard to write on the iPad, I will find a computer with a keyboard later today
Shirleyin reply to: Insomia relief? #1061213Hi Dragon,
My thought is that you need to know NOW what is going on with your vision. It is not optimal, but if you cannot get an appointment with a neuro-ophthalmologist, or another eye doc who knows how how to do visual fields, and other tests for optic neuropathy (pressure on the optic nerve) I suggest going to the ER, saying "I am losing my vision," then insist on getting an eye doc involved in your visit asap. That sure is not the preferable way to go. But, your loss of vision is potentially very very serious, and there IS a possibility you could lose vision in that eye, and you need to know.
Kimberly’s suggestion of calling your endo, or primary care doc, or anyone who you can find, tell them your symptom, ask them to facilitate an emergency visit to a good neuro eye do or good eye doc.
Then you know that if there is something wrong, you can be helped, and if there is not any immediate answer, you will be established with doc who can figure this out.I am speaking from my own experience. I did have optic neuropathy, and did need an orbital decompression to save my vision in my left eye.
shirley -
AuthorPosts
