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I just want to say what a wonderful set of posts that has been! Princesslala, you gtive a great history. And you really will learn a lot at the conference. Bring your mother, too. She will get support for missing what now seems obvious, and will learn what to look for and how to support you. You will learn how to live the rest of your life!
Your assignment: Add Pediatric Endocrinologist to the list of speakers needed. Send me the name of the doctor in Akron, and maybe we can get him to come do the presentation!
in reply to: New to this website #1071153I like what nmasay says: "…thank them often". We vasilicate between telling them EVERYTHING that is going on, or not telling them enough. Having this forum to explore possibilities is a great help.
It would be worthwhile to have an appointment with the Nurse Practitioner and you and your husband both go. Just to have someone who has the skills for explaining (while we get all tangled up and confused) seems like it would be an invaluable experience.
The, ask the NP to write it all down and send it to us!
in reply to: new on site also #1071616Hi Kaygos,
Yes, this is a place to share your frustrations (and we DO call them that). That may be one of the nicer words we use. Have you gotten the answers you need about your eyes? I couldn’t find the other two posts.
in reply to: GDF Conference Info #1072231We have an active local committee, comprised of the Charlotte Support Group. Adrienne Love and Laurie Eustis are the support group leaders. Adrienne did the site visit and got things started, and then Peter did the actual negotiating. AWESOME!
I am going to start another subject, and it will have to do with what topics you would like to have covered at the conference.
in reply to: Nashville Patients #1071356When either of you find the good doctor in Nashville, get him or her to help he two of you to start a support group there. On the old bulletin board, that is what we called a "shamless plug".
Have you gone to [url:3jezokof]http://www.thyroid.org"?[/url:3jezokof]"That is the American Thyroid Association, and you can search for patient referrals/thyroid specialists. There are two listed in Nashville. Good luck!.in reply to: RAI and Eye Surgeries…Decision Time #1071199Hi Sandy,
Ski just gave you an EXCELLENT overview of RAI and Eyes. I will give you some personal experience–but you have to remember that my journey started over twenty years ago.
I was diagnosed with Graves’ in about a six-month time frame. I was seen by doctors who did not know "me". I had a small dose of RAI. Two weeks later my eyes "felt funny." They put me on Synthroid immediately. The connection between RAI and eyes was not known, and the thought was that TSH levels were too low.
What we know now is that people with pre-existing eye diseaseare at great risk for a worsening of the eyes, while those with no pre-existing eye disease are not predisposed to reacrtive eye problems.
The fact that these doctors did not know "me", and therefore did not recognize my pre-existing eye disease. It meant nothing at the time. I had already developed a prominent "thyroid stare", but no one recognized it (not even me). They would not known to give me prednisone. During the next three years, while battling the difficult to stabalize thyroid levels along with my buldging, red, double-visioned, eyes…when I would have bouts with Pretibial Myxedema, I would get a shot of prednisone. I would ask: "How come I get a shot in my ___ for the ____ on my legs, and my eyes get better?" I was pretty much just joking around, but about a year or two later, the connection was made.
My eyes took longer than most to become stable–in my case meaning the swollen muscles did not diminish, but had turned to scar tissue. They were no longer inflammed, just bigger than I would have hoped for!
Luckily, I had an ophthalmologist who did know that there was surgery that could be done, and he gave me HOPE for all that time. The sad thing was that people all over the country were being told that "there was nothing that could be done", and to "just learn to live with it".
I did have the surgeries, and the whole process took exactly one year. I had each procedure done three months apart. They did both eyes each time. I was out of work for two weeks each time–mostly waiting for the bruising to go away.
I hope this gives you some answers, and I think you will hear from others.
in reply to: Venting…DENIAL AGAIN! #1071162Will you be going in for a hearing with an ALJ? If so, it might help you to go to the Social Security site and looks for "The Rules". These are the guidelines that they use. I have known people to copy these and take them to the doctor that is writing their report. I don’t know if you now have to start all over, but if so, do check the RULES. If you cannot drive due to the glare of the sunlight, then DON’T be driving yourself to a hearing. Have someone take you. It is fairly simple things like that.
I think I can possible help with this one: Remember that doctors deal in specifics when possible. Facts like: how many hours you are able to sleep; heart rate; strength/weakness walking up stairs; leg muscles; upper arm muscles; ability to focus–if distractibility was a problem. If you dare: Ask a close friend or your spouse what they have seen. They are usually very observant.
You can look back over your presenting symptoms, and do a contrast and compare. The doctor will be doing that with your bloodwork.
Hope you have a good report. Remember, it may not be working as fast as you would like.
in reply to: Ut oh…feeling a little like I use to…Update 5/28 #1071236Well, I guess you got some answers, but there are more. The endocrinologist will do some more detailed testing. Do you have (or can you get) the lab work reports that were being done 22 months ago? Those will be important, I think.
Cathy did shed some important light on things…at least what we have can be treated–even if we fuss and complain all the way down the treatment highway!
Your doctor shed some more important light on things…you (we) have to take care of ourselves. There is a great deal of shared responsibility in all of this. Doctors cannot do for us the things that we must do for ourselves, and that works in both directions.
You have been a great poster and supporter. Please stay with us and let us support you!
in reply to: Graves Dermopathy – anyone?? #1071182Ahhh! One of my favorite subjects…as I scratch and rub in the Prednisone! I am 20+ years post-ablation, but I still get the "stuff on my legs" periodically. I am surprised that Mayo didn’t nail it, but not at all surprised that other practioners had never seen it. You mention your feet, rather than your shins. That may be what is confusing. Biopsies can be done to definitively differentiate/diagnosis it.
It is another of those "antibody" events. It is the same antibody that affects our eyes, so I can usually soothe myself that it isn’t my eyes, at least. In the early years, I had both going at the same time.
Prednisone is the first line of treatment, and you won’t get systemic symptoms if you are a) applying it topically, or b) aren’t on large doses of if for many months or years. One thing that has helped, and I have had three different doctors recommend it (including our Medical Director) is to apply the cream at night, and really rub it in. Then wrap your lower leg in Saran Wrap, put it long sock on, and leave it on all night. Several nights in a row can make a big difference. I have been on Pred-Paks a number of times.
It can get more serious, but for the most part is a HUGE annoyance. We had a great Dermatologist speak at one of our conferences in Louisville.
in reply to: New here, but not to Graves #1071254Dear Pam,
It looks like you have a bunch of things that you and the doctor need to sort out. That said, the things that I can comment on are that you are correcvt that you will need new testing done. I will assume that the uptake scan was done when you were originally diagnosed?
The Standards of Practice (AACE) iindicate that the appropriate tests for a Graves’ patient include (but not limited to) TSH, Free T3 and Free T4. I don’t think your doctor will be insulted if you ask her what the difference in these is from the T3 and T4 you have had in the past. You probably know already that we don’t interprete tests.
The muscle wasting in Graves’ occurs when one is very hyper, (read: untreated or undertreated). That may not have anything to do with your current night time leg spasms. I would have suggested diet–taking a look at calcium and potassium–what do you do during the day? If you are sweating a lot, you may be depleting these. Bannanas, and orange juice are good for that.
When you talk to your doctor, let her know what, and how much, you are taking as supplements, so you can both understand how they interact with your prescribed medications.
I am sure you will hear from others. Best wishes for your appointment next week.
in reply to: BLOODWORK when to do it. IMPORTANT #1071344A couple more hints:
Exercise may be just parking your car at the end of the parking lot and walking, or taking the stairs. Ideally, you will have your blood for thyroid tests taken in the morning, WITHOUT taking your morning dose (if you take it in the morning) – every time you have bloodwork done. You can have your morning coffee, a light breakfast, but have your thyroid level consistent. If you are having other work done at the same time, you may need to actually be fasting. The comment about good hydration is really important. You cannot imagine how hard it is to get the needle through the skin, much less into the vein, on someone that is dehydrated. Good Luck!Dear ely,
One obvious answer would be anxiety; and the second most obvious would relate to your hormone level. At least make a note on your calendar so that you know how often it happens, and how long it lasts, so you can tell your doctor when you talk. It would be helpful to note what might be going on in your life at the same time. I put medication reaction last on the list, only because it would be logical that medication would maintain a fairly stable level. I hope this helps.
in reply to: Decompression Surgery April 15th #1072151I had both eyes done at the same time. As others have said, it sounded scarier that it turned out to be. My best advice is to follow the surgeons recommendation about ice packs. Mine requested them fcontinuously for 48 hours. They were better than pain medicine! My eyes stayed "numb", the swelling stayed down. I could just snuggle back down and go right back to sleep.
Like others say, you will be glad you had this done. Your eyes well feel better, will CLOSE (!) at night, and by the way…you will look better, too.
Take care ~
in reply to: Diazepam – possible withdrawals? #1072127What you are describing is not withdrawal symptoms.
I know you don’t like taking the medicine, but it works much better if you take it as it is ordered–meaning on a regular basis. For sure, tell your doctor about your specific symptom. Maybe you even need to change prescriptions–just for your sense of sanity.
You are looking at a really big event, and it would make anyone nervous. Try to stop being so hard on yourself. This is not a sign of weakness, fragility or a character flaw.
To borrow and paraphrase a sayinhg from Elaine Martinez: You have Graves’, don’t let it have you!
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