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in reply to: Help! My 33 yr old daugter recently diagnosed. #1180742
Dear “Mom”,
(I was just typing this and lost the whole thing…hope I can remember what I was saying)
Probably the best thing you can do is become well-informed yourself. There is excellent information available, both here, and from the established medical sites–all have information for patients–but ours in the best;) IMHO
WE hear from parents and loved ones frequently, and the one theme that runs through all of them is that you have no control over that person. The best (again) you can do is become well informed.
Do you suppose your daughter would let you accompany her to her next doctor’s appointment? There are several reasons for that, one of them being to be her extra set of ears. Frequently, the patient doesn’t really hear all that the doctors says because it is just “too much”.
The board is here for you, and/or your daughter.
Take care,
Nancy
in reply to: New to forum-not so much Graves #1180690Dear Elaine,
I just read your post, and it has made me pretty much speechless–and that doesn’t happen very often. Is it good, or bad, that you are also a healthcare professional? You obviously know more than the average patient, but I suspect you see doctors who are more specialized than average doctors. Let’s hope you make a good team.
If nothing else, we will be here for you to have a place to communicate with others who also have Graves’. We will listen to you, hear you, and support you in any way we can!
Take care,
Nancy
in reply to: checking in and being thankful #1180759Dear Ruby,
Thank you SO MUCH for your post. We know that we help a lot of people, but it is so nice to have someone drop in once in a while and say that things are working, that they have a life again, and they are truly living with Graves’.
Take care, and drop a note anytime,
Nancy
in reply to: Endo changed dosage, Pharmacy changed brand…… #1180756Hi Jacqinquotation,
I read your post a couple of days ago, and just re-read your update. What country are you in? Here in the US, “Synthroid” is the one that is “brand name”, and most of the others are on the substitute list. Also, here in the US, Levoxyl (probably the 2nd most popular brand) was pulled off the shelves, and won’t be available until 2014 (if then). So for the past six months or so, I pretty much never know which brand I will be getting. I am glad to hear that you were able to get yours changed back to the one you have been taking.
It is true, a person has to re-stabilize on meds when they change brands, even though they are supposed to be bio-equivalent. Thanks for including the link to the Thyroid Awareness. I had never looked at it before.
Take care,
Nancy
Hatsumi –
WELCOME HOME – I hope that’s how many people here feel–that this is a place they can come home to. It is also good to hear that you are feeling pretty good (except for your stomach thing). It is what we have been referring to as our “new normal”.
Take Care,
Nancyin reply to: Switched meds and feel awful :( #1180726Hi Heather, I am glad to see that someone knows about Tirosent. It is the newest FDA-approved medicine on the market right now. It is a gel cap, and has no fillers at all. All the brands have some type of filler, and they are all different.
There is no reason why your doctor shouldn’t switch you beck to your old medication that worked so well for you. If your family practice doctor isn’t comfortable changing you beck, get an appointment with the endo you used to see.
Take care,
Nancy
in reply to: does it get any better #1176830Dear Mari,
Yes, it does get better! It takes a long time, and there may be some ups and downs (or sides to sides). Prisms are some of the best things ever invented. If you have a “doctor’s change”, the optical shop will usually honor the change and make you some new lenses either free or at cost. Meanwhile, have you ever heard of Mepitac tape? Mercy Surgical, 1-800-637-2950. It is silicone, gentle on the skin and eyelashes, and re-usable for two or three nights.
Take care,
Nancy
in reply to: Did your diagnosis effect your relationship? #1180738Dear Steph,
You are right, the title says it all. I think anyone that is on this board is in the category that would put a strain on our relationships. It puts a strain on our relationships with ourselves, much less the ones we love. At least they can go for a walk and get a away for a few minutes.
It is one of the things that we will be discussing at the conference in Baltimore. Maybe another question would be “how are you dealing with it?” I can remember talking on the telephone (in the same house). I “looked” so angry that what I was saying to his face was completely negated by “the look”.
My favorite: “Have you had your levels checked?” That would make me soooooo angry. It usually came up in the midst of strong discussions (not exactly fights). My retort was to write down what we were talking about on the calendar, and then go get my levels checked–which I was certain were just fine, thank you very much. Guess what, after we started doing that, I never, even once, got to bring up whatever the subject was again…my levels were always off.
Take care,
Nancy
in reply to: Too many doctors & I hate steroids. #1180717Dear Amanda.
Just reading your post brought back [melancholy] memories. Ah! Pr4ednisone! It will help us survive, but the trip can be pretty rough. I can look at some old pictures and even tell you what dose I was on at a given time. I r4emember driving through a fried chicken place and tearing in to it with my bare hands–oops, I don’t even LIKE fried chicken. It will go away, and you are certainly on the low end of things, so hang in there.
Take care,
Nancy
in reply to: Do I need a Psychiatrist too? #1179434When elephants fight, it is the grass that suffers.
in reply to: Do I need a Psychiatrist too? #1179433Hi everyone,
When I first clicked on this thread, I thought it was a brief disicussiohn about whether or not we might benefit from the help of a psychiatrist–and you already know my position on that–YES–but an appropriate one. However the “thread” got very tangled–and ‘way off topic!!
No one needs to leave the forum. Everyone has positive support for others with Graves’–but we need to get back to that–NOW. Supposedly, I have the clearance to block things, but I don’t have the skill. So, please, everyone: take a step back, multiple deep breaths, and let this rest until Kimberly gets back on line.
Take care, both of yourselves and each other,
Nancy
in reply to: Does TT cure Graves? #1178982I would say that it is the nearest thing to a “cure” that we can get. Yes, the antibodies are still “in there”, but in essence there is nothing for them to attack. I used to describe them as confused gureilla (sp?) soldiers, and hopefully they will just go back to their tents.
What Alexis said is great: getting your life and health back is definately a plus!
Take care,
Nancy
in reply to: Would you take Vitex? #1178892Karen,
You are doing exactly the right thing…asking the doctor!
Take care,
Nancy
in reply to: Question on Cytomel dose added to levo #1178866I read this last night, but waited until today to answer, hoping some others would jump on. PLEASE be careful with the Cytomel. It is not like “5 hour energy”. It leeches calcium from bones, stimulates your heart, and generally is very rough on your body. You have only been on levothyroxine for two months. If I could find an old post, I would copy and paste, but here goes:
One needs to do a very reasonably trial on T4. Give it time to get adjusted to your body.The T4 breaks down into T3. If, after months of taking it, and you still really aren’t stable, then conventional wisdom dictates that you have a bone scan, an EKG, and ideally a neuropsychological exam. That would pick up on memory issues, i.e. our famous brain fog. It is NOT a crazy test.
When you start T3, one of three things will happen (assuming you are not taking them on a random, self-prescribed schedule):
1. You will feel nothing–not better, not worse, In that case, stop taking it. The only effects are internal and negative–see above
2. You will feel more hyper than ever–in that case stop taking it! You will have no problem with the decision at that point.
3. You will feel BETTER! You will be able think more clearly, your memory will improve, and your stamina will improve. In that case, you are one of the small percentage of people who do need supplemental T3. Keep your doctor appointments, keep getting Free T3 and Free T4 tests, and keep taking it!
Please don’t become a walking, talking campaigner for T3. It is great for some folks, but is not a harmless, feel-good pill.
Talk care,
Nancy
in reply to: I feel like giving up #1178852Dear Karen,
It is difficult to read ALL the things that you are having to deal with–all at the same time. No wonder you are overwhelmed!
Talking to the doctor about your feelings and fears about a hysterectomy, and whether or not that would be a solution is probably #1.
Things sound out of whack all over the place, and you need someone to talk to. Whether that is a counselor, a grief therapist, but someone that will actively listen to you, and help you find your own strength (however small right now) is so important. That is not to say you are weak or crazy, or any other inference people sometimes take from my “advice”. You, nor anyone else, is equipped to handle all these simultaneous things well. Now throw in some mixed up thyroid hormones, adrenaline out the window, and all the anxiety that those chemicals create, combined with the real fears, frustrations and feelings of alone-ness. If I sound like a therapist, that’s because that’s what I do! That’s why the foundation was started 20+ years ago.
My mother would be slightly over 100, and I know how that sadness can get magnified when all the other things are stirred in. I don’t get to the cemetery often because she is in Florida and I am in North Carolina, but either I throw a blanket on the ground and I have a wonderful (even if it is one-way) conversation, catching her and my father up on whatever is going on in my life, the grandkids–whatever. Just as often, the blanket is on the ground and so am I–weeping crocodile tears. I do try to think what they would want for me, and I know it is to get the help/assistance I need and get back to living.—My mother was a counselor, so she kept our eyes on the prize!
Your’e going to make it through next Tuesday, but it will be one day at a time (’cause that’s all any of us get). You are going to talk to the gynecologist/surgeon (?) and ask your questions (which you are going to sit down and write out so that you won’t forget). You’re going to stay connected with all the people here that are so supportive of you, and “we” will all get through this, day by day and piece by piece.
Please take care,
Nancy
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