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in reply to: Herbs and Graves, my experience #1181848
I totally agree with Kimberly. “herbs” are the same things as medicines. They change and alter many things in our bodies, as well as change the way some medications act. BE CAREFUL.
When you talk about pressure, I assume you are talking about the intraocular pressures they measure when Glaucoma is suspected. Because of your fluctuating pressures, you need to continue to have that checked on a regular basis, for while it is not actually related to Graves’ eye disease, it is something that can cause blindness.
Take care,
in reply to: Too long between tests? #1181863Dear Barbra,
Remember that we are not doctors. However, we do know that it takes at least six weeks for thyroid hormone to balance out in your system. There is nothing wrong with calling your endo and requesting an appointment, or at least some lab work, around the first of February. Even a change of 13/1000’th take that long to stabilize.
It will help to let the doctor know specifically what is going on, rather than generalities. for instances, how often are the muscle aches, can you rate them on a pain schedule of 1-10? Are they at night, during the day, or random?
I learned this the hard way: When I was having a hard time getting stabilized, I would tell my endo that “I feel like S—“. I saw him almost every month to six weeks. When almost nine months went by, one day I said “I feel better now, and I even remember what good felt like”. He flipped through my chart and said, I guess that’s better…all you ever tell me is that you “feel like S—!”. I was mortified! That’s when I learned they couldn’t read my mind. imagine that!
Take care,
Nancy
in reply to: Articles on Pyschological Impact of Graves #1181797There are still plenty of the packets here. Send me four stamps, and a card with your name and address and e-mail, and I will ne happy to send them to you.
Nancy Patterson
84 Streamside Drive
Hendersonville, NC 28791Thanks for this reminder. I was about to do some shopping on Amazon, so I did it through Amazon Smile. It was the same as regular Amazon.
in reply to: Blepharoplasty/decompressiom #1181770If he is with ASOPRS, he is a plastic RECONSTRUCTIVE surgeon, and that is what you need. You may still need a second opinion, and/or you can share with him that you felt a little uncomfortable the day you saw him…that he seemed a little distracted?
Gatorgirl is exactly correct in telling you that there is a definite order in which surgeries are done. Also, yes, you will need (and want) an MRI. Keep us posted. Take care,
Nancy
In response to the couple of posts about “diagnosis” and treatment of bi-polar and/or depression, anxiety and/or panic in Graves’ disease: The DSM (Diagnostic and Statistical Manual) of the American Psychiatric Association has some very clear guidelines about these disorders when they are connected to a physical illness. Now in its 5th Edition, it points out that although there are clear guidelines to diagnosing these disorders, that when coupled with the underlying physical conditions, we do NOT meet the criteria. There are diagnostic codes for depression secondary to a physical illness (same for bi-polar and anxiety). One of the problems is that endocrinologists do not read the DSM V. They are at least recognizing that there is a problem—but not the source–which makes a difference in how they treat it.
On another note, when used appropriately (meaning the correct medications) anti-depressants really do help. Especially the SSRI’s and the SRNI’s. If those medications have made you “numb” (and they can certainly do that), the dose is too high. Again, this is not their specialty. The medications for anxiety and panic disorders and not antidepressants, although some of them help with anxiety.
You are all touching on one of the areas that prompted the founding of the GDATF in the first place. Not enough information, not enough understanding, not enough accurate treatment. The psychiatric nurse practitioner in me couldn’t let it go! Thyroid hormone level DO make a difference. When they get stable, then it is time to look at the problem differently. Please don’t be misled into “no treatment” or conversely, things like naturopathic treatment. Take care of yourselves.
Take care,
Nancy
There are still several sets of reprints. You are all welcome to them. Nancy
Hello,
It sounds like one thing you need is a second opinion. There are gynecologic endocrinologists. It sounds like you are headed in that direction.
There have been many babies born to Graves’ mothers. You are one of them. You have gotten some good support and advice. I just wanted to say hello and wish you the best.
I have a question: What is “ttc”? I figured out ivf, but also don’t know what LLL stands for! Abbreviations always get me cross-eyed.
Take care,
Nancy
in reply to: RAI vs Surgery for adolescent with Graves? #1181619Dear Penny,
For once, I cannot say there is not enough information! We are not doctors, but any doctor you may ever see would be well-informed by this post, so print it out and keep it.
There are pros and cons for every treatment, even for children and adolescents. I will send a note to Kimberly and ask her to get you the information that was in a fairly recent newsletter about surgery becoming much more a selected treatment. The recovery is relatively brief (Christmas vacation is coming) and the adjustment of thyroid replacement must go on with whatever treatment is selected.
While he certainly needs parental guidance, you son needs to have an informed say in this process. I hope parents who have been through this will get on the board and post; even some teenagers.
In the meantime, go to the Home Page, and then to “About”. It takes a couple of clicks, but there are articles in there about comparing treatments, surgery, and children. Print them out and read them.
Take care,
Nancy
in reply to: Graves Disease & Headaches #1181613Dear Grace,
IT is hard to do, but try to not be worried. Taking action is much better! I assume that your levels were off or the ATD would not have been increased. Is there anything else that could be going on? Have your eyes been checked for swelling that might be causing the headaches? We are here for you, so keep in touch,
Take care,
Nancy
in reply to: Thyrotoxic Myopathy #1181510Dear Karen,
While I have heard of thyrotoxic myopathy, I am not that familiar with it, other than some mild wasting in my lower legs. It has been so long ago that I no longer remember it.
Are you seeing a thyroid specialist? I assume you are checking out reputable websites like Mayo Clinic, American Thyroid Association, Endocrine Society, AACE, Web MD, etc. They usually don’t go into nearly as much detail as someone who has been there, but the information will be accurate.
Take care,
Nancy
Dear everyone,
Thanks to those of you that have send for the articles. What I really need are the stamps, rather than money. They will save me a trip to the post office. If I did my math correctly, four first-class stamps will more than cover the postage.
Nancy
Dear Laura,
Your articles will go out in Monday’s mail. In the meantime, something to consider is that we need to be able to explain to our employers and co-workers what is going on–without it sounding like an excuse. I have been there!
Dr. Terry Smith is our Chief Medical Officer, and is located within Kellogg Eye Center. Many of the professors at Michigan make up our speakers at conferences. Be sure to mention us when you see your new Endo, as well as Dr. Smith. It is one time that name=dropping will be very appropriate.
Take care,
Nancy
in reply to: TT yesterday afternoon #1181442It is awesome to hear about how well things went! We are all cheering for you, and remembering to take it easy on ourselves, as well!
Take care,
Nancy
in reply to: Newly diagnosed with Graves #1181467Hi Shell,
Welcome to our board. I can also refer you to the British Thyroid Foundation “www.btf.org”. Janis Hickey is their President. They are really active over there. If that address doesn’t get you to them. let me know and I will dig deeper for her personal e-mail. You can also try the Thyroid Federation International.
Take care,
Nancy
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