Forum Replies Created
-
AuthorPosts
-
in reply to: Feeling fairly hopeless #1183283
Hi Linda,
It is really, really tough to have this drag on. Especially cause you had a good experience for a while on ATDs. hell to regress and feel like crap.Not sure about your work situation. I think Kimberly’s thoughts are good. Definitely HR and your boss should know, cause you will need to take some sick leave or LWOP (leave without pay) if you want to save your sick time. I can tell you that I worked in health care, and it is so busy, that the general expectation from my co-workers that I continue to “pull my weight” at work, which was discouraging and demoralizing to me, all the more, because I worked in health care..
You are having your RAI very soon, so most likely you have a “note from your doctor?”
I totally “get it” People understand the word “cancer’ and most people have relatives who have had it, or they themselves have. Now and they you will find someone who totally “gets it” about Graves’, but it is not as common, cause Graves’ is not as common.
I hope you get to the “sweet spot” about talking to friends and work. You need and deserve support and understanding, and really, it is kinda hard to get sometimes. But with each day, you will progress to being your”Old self” and one of these days, you be writing (I hope) on this forum, giving another newbie encouragement that it DOES GET BETTER, and most of us get back to our old selves, pretty much. This is hard to evaluate sometimes, cause other stuff keeps happening, including getting older! And other stresses in life.
Please do keep writing. I was out of town, then sicker than a dog with a respiratory thing. Back in the world of living and feeling better now.
That period of time prepping and waiting for RAI is really limbo, and it does take a while to get to feeling better after an RAI, regarding management of your thyroid dose. but it will happen!
Shirleyin reply to: any help please! #1183294Joy.
All this abnormal stuff you have mentioned, IS normal, for the stage you are in.
It does take a few weeks to change doses, to have how you feel and your labs represent “where you are” Generally, after getting a big established, it is best and optimal to have thyroid labs at least 8 weeks after a dose change. It seems like 8 years.I hope by now, just a few days later, you are feeling a bit better.
ShirleyYes, do write again. bedrest seems a bit much to me! But save exercising for later on. Save what energy you have (I know it is not a lot) for what you HAVE to do, like keep your job.
A neuro-opthalmologist the BEST IDEA and option for your eyes. Do not be surprised if there is wait for the appointment. If your mention your symptoms, that you have Graves, and have TED (thyroid eye disease) cause you probably do, you will probably get an earlier appointment.
Shirley
(who has had it all, done it all!)Oh, sorry. I meant to mention that in this situation, homeopathic options are not good considerations, and if anything, you will find out this yourself sooner or later, and the passage of time will make things drag on longer. I have no idea what OUT is, I will look it up after I post this.
Again, my thoughts and opinions, but backed up by evidence based studies and literature.
Shirley
I think the very most important thing for you to consider, is what YOU want, and what you have reservations about. The caveat for surgery, is that you have a good surgeon, they are usually in major medical centers, and that they do around 50 thyroidectomies a year. I had surgery. It is so quick to revert to getting good management, compared to RAI, in my opinion. And thinking of getting pregnant, is another consideration. There are quite a few posts on this, who were in your same situation Inform yourself of the pros and cons of all three treatments, and use the Search option, putting in key words to read the experiences of others.
Shirleyin reply to: Medical Alert Bracelet #1183307I think it is a great idea. I wear a Medic Alert bracelet all the time. It is critical that providers are are aware of Graves’, in my opinion.
Kimberly, I think it is critical to wear one all the time. If you are in the hospital without your ATD for a few days, it will make a difference. Does your regular ID have all your medical information on it? And would someone look for it?
Having worked in a hospital, and duly recorded what patients told me the meds they were taking, it is a big leap to get the docs to write the orders for what you (and the patient) know what they are taking, and the difference it would make if it took a few days to get the bureaucracy of it all….resolved.
But…I am very cautious, and I know too much!! (
:
shirleyI had surgery. Cause it was the quickest. And it is. Major consideration is that you need a few weeks, usually 2, to recover, and that your surgeon “does” thyroidectomies, at least 50/year. Usually major medical centers or places i big cities. Others chose RAI.
Either way, it makes sense that there is a chance to “go hypo) but generally, people are started on a thyroid hormone (I take synthroid) quite soon, therefore eliminating the possibility of “going hypo.” The beginning mom. dose is sort of a kind of a guess. You go with how you feel (but you need to wait long enough to KNOW This) and your labs from then on. It is really not that bad.
For unrelated reasons, we tried to reduce my Synthroid a fair amount, and I DID get hypo. Felt like a slug who could not get out of bed. We gradually increased it again, but to a smaller dose. ****It takes AT LEAST 6 weeks, and more preferable to wait 2 months, before dose changes. Takes a while for everything to settle in, including you, so you actually DO know how you feel.I felt like I NEVER slept while hyper. goes with being hyper. No nightmares .
Re Ambien, I know what all the studies and stuff say. Depends on how it affects YOU. I have it as an “insurance policy” and would not be without it. It helps me get to sleep if I can’t I feel fine the next morning, always have, no way can I tell that I have taken it. I would not feel a bit concerned to get the refill or ask for another RX. Unless you are rendered immobile the next day, and you are worried about it. From your post, maybe it does knock you on your butt the next day. Does it, or is it what you have read about it?? Poor sleep has plagued me for years. I do take gabapentin for sleep, (a seizure med, but also makes some people sleepy, which is a complaint of that med…) Another name is neurontin. It is very benign. Ask your doc about it if you want to stay away from Ambien, ask your doc about it, other name is Neurotin. I am not sure if it makes any difference. Trying to figure that out.Sleep deprivation changes your, ours, mine, everyone’s whole world, that is for sure.
I do not have nightmares.
I am always pretty tired. Decided to stay up all the way until 9pm tonight..wish i were a night owl
Shirleyin reply to: Update and swollen lymph nodes #1182746Yes, we really don’t realize that hyPO is as hellish and awful as hyPER, until we have that experience. I am so darn sorry you feel like crap.
I have had your experience, and when people who did not understand Graves’ said “hey, it will get better, or it can’t be THAT bad!” I wanted to scream at them, “YOU HAVE NO IDEA WHAT THIS IS LIKE!” It actually did help me, in my slightly more rational moments, that before all this, I am one of those people who had no idea what it was like. And that makes this site so valuable.
IT is terrible to have factors, known and unknown, bossing our bodies and minds around, and that is what is happening. You had done a lot of thinking before you scheduled your surgery, then a lot more before you cancelled it.
I am guessing, without knowing, that it might be your decision to have a partial thyroidectomy (also called a subtotal thyroidectomy.) I mentioned in an earlier post (right before this one) that I did have a subtotal one, cause they were doing them “back then.” As Kimberly mentioned in her post, now they do TT’s for the reasons she mentioned. Sooner or later, the patient (in this case, ME!) became hyPOthyroid, and I began Synthroid. and others I knew, had recurrent hyPERthyroidism, and had to go on that whole miserable merry go round again.
So the current thinking is,, that there are more “knowns,” if the whole gland is resected, and that it is easier to manage thyroid hormone replacement. I think this makes sense, based on my own experience. We were constantly wondering if I was/was not producing just a little bit of thyroid hormone, which made trying to evaluate my symptoms, the way I was feeling, consequently the dose of thyroid hormone replacement, much more difficult. With a TT, you pretty much KNOW that you are not producing any thyroid hormone, so trying to get to that stupid “sweet spot” where all of this is past history, and you are back to yourself again..is just that much harder,and takes that much longer.
Let me know if this needs more explanation. It’s pretty much my experience,and what I have learned.I am the kind of person who wanted it OUT, and to move on as quickly as I could, so surgery was a great decision for me. I think I referred to my experience a bit more in my last post written today, so you might take a quick look at that one, too.
I really DO know the tough time you are having right now. I guess I preferred frequent bowel movements to constipation, and feeling more hyPER, rather than like a total slug who could not get out of bed. But if you had asked me at the time, I would have told you that all I wanted to be was NORMAL.
I found Graves’ a terrible experience. And with the exception of taking Synthroid, it pretty much IS behind me. I did get TED many years later, but not many people do. I am just SPECIAL!!
HA
SHIRLEYin reply to: What to expect? #1183237Hi Amber,
glad you found this site. Like all things internet, all kinds of folks have all kinds of agendas, for the site, and for the posters. Some people thrive on drama.
I think you find this a very reliable, wonderful site, plus you will have new friends. I have gone to a couple of the conferences (not sure if they have decided to have geographic ones now, or will revert to one single national conference during the year. They are WONDERFUL. I still correspond with people I met there six years ago.AND I am from IOWA, although it says Seattle, which is where I live now. I go back to Iowa City (home) every year.
You will see my history below. I was a student at Iowa, in my early 20’s when I became hyperthyroid. I was a crazy person. Not productive, but wound up tight, but at the same time, no energy. I began with an ATD, Tapazole, began to feel human, then got hypothyroid, which is just another hell associated with Graves’.
I had a (sub)total thyroidectomy,cause that is what they did then. Now they do total thyroidectomies, which is a good idea. Having the surgery, changed my life in a wonderful way. I turned into a normal person again. Seems to me it took about 6 weeks to FULLY recover from the surgery (meaning no fatigue at all) I went back to school and work in the middle of the 2nd week after surgery. In my opinion, a bit too soon. I wish I had taken advantage of feeling so much better, and simply having some time off. I have been on Synthroid for many years, and now and then the dose is changed, based on how I feel, and it can change as years pass.
The surgery was easy. (in Iowa City.) When you get to that point, get referrals for a surgeon in Ames who does at least 50 of these procedures a year…or go to Iowa City, have it done there at UIHC (university of Iowa hospitals and clinics, a great place.) Mercy is also here. I can ask my contacts in IC for referrals, if you get to that point.
You will be able to go back to school, you will be able to like it, and have a LIFE again. Graves’ is HARD.
Re fibromyalgia, you know more than I do from your experience, but I have a few friends who ultimately “got over” that condition. It really sucks your battery, that is for sure. You have a double whammy. So darn sorry.
All for now. Write with questions. Yes, I agree with the article about running out of spoons!
As I recall, Iowa State did a nice job of defeating UI in football this fall! I casually keep track of it…very casually!
Shirley
in reply to: My recent thyroid blood test #1183221Yay! Then maybe it will go away when you are through with all of this!!
ShirleyHi whited!
Welcome to having a wonderful group of new friends! (meaning US!) We get it, we understand and all of us have been through our own Graves’ hell. And that is what it is! The good thing is, that pretty soon, you can say “that is the way it WAS!!”You will be better. Here is my experience, addressing your questions.
1. My heart rate was really fast, and as soon as I became less hyPERthyroid, it slowed down. So the heart med to slow my heart rate and blood pressure was discontinued when my BP and HR were down around 80, and 120-130/80 and below.
Of course, what I stated above was directly related to Graves’.
I am MUCH older than most on the forum, and now I am on a BP med for an entirely different reason, unrelated to Graves’2. I drink coffee, no decaf. 2 cups in the morning. Rare cup in the afternoon, now and then. Is fine. You don’t have to give it up.
3. Before my diagnosis, I was a crazy, hyper person, who wanted to stay at work when my shift ended. I was in my early 20’s had a baby. It was not until I collapsed at work (in the hospital) that someone decided to actually LOOK at me, take vital signs, a history an do some labs. So I am sure I had Graves’ at least a year before my diagnosis.
4. Kimberly’s thoughts about T3 and T4 are very important. Treatment should be based on those labs, plus how you are doing clinically.
**If you are not doing it already, get copies of all your visits, and all your labs.
Shirleyin reply to: My recent thyroid blood test #1183218Don’t know. Ask the doc. A lot depends on how you feel, along with your labs.
Tinnitus (buzzing in ears) is a puzzle for everyone, including docs,and people who have it. I have had it for years, and since I was a kid. I don’t think you should plan on it disappearing if you are euthyroid.
Here is an article about it. A good overview.in reply to: About Hyperthyroidisim #1183215Good question to ask one of your docs. But I do know that the incidence of UNCONTROLLED hyperthyroidism, for a period of time, increases incidence of atrial fib. You can look this up, too read about it.
snelsenin reply to: Graves disease and surgery #1183199On the other hand, hypotension is EASILY managed by the anesthesia doc, intraop (during the surgery) and afterward. Worth asking this question of surgeon or some doc involved in her care. We do it all the time.
I hope her labs improve, so this is not a contraindication for the surgery.
Shirley.in reply to: Well, here goes! #1173715Oh gosh, Az. Gravesguy!
How nice to hear from you!!
What a wonderful person you are!
You have been down a long road, as we all have!
Thank you so much for writing again! i feel like I kNOW YOU!
SOOO TIRED TONIGHT, so going to bed at 9:30 west coast time.
Do check in now and then. Because you can continue to help others, after all that you have experienced. You are a great “give-backer!”
Don’t ever get TED!
I will see that you don’t!
Shirley -
AuthorPosts
