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in reply to: Surgery #1063030

Heather,
if you type "surgery" or "thyroidectomy" in the search engine, you will find many great posts about having surgery. There are some very recent posts of recent surgeries, and how things went. In all cases, they went well. In some of those posts, there are detailed posts from myself and others, about every step of the experience, plus post op days. I will try to find some of my own posts, and send them to you. You will learn a lot for the experiences of others.
How long has it been since your diagnosis of Graves’?
Shirley

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in reply to: weight gain #1063042

Hi Heather,
In response to your question about Alli. I suggest you follow up on your interest by doing three things.
1. Read the Mayo Clinic website discussion of this weight loss drug. It is a reliable, informative resource for you. Read through the entire two pages. There is a list of side effects. Be sure to pay attention to the bowel changes, which can be significant to your life style in a negative way. You should pay attention to the caution that is listed of medical conditions where you maybe should not consider this drug One is THYROID DISEASE.

2. So you should definitely call your endo, consult with him/her about it. It would be very helpful if you would give him the Mayo Clinic website reference, too.
(Websites that are promoting a drug are not good places to obtain objective information. Their motivation is to sell their product.)
The website: http://www.mayoclinic.com/health/alli/W … IONGROUP=2
If, for some reason, put Mayo Clinic and alli in a google search engine.

2. REad Kimberly’s excellent post about weight management. It is excellent, logical, and healthy. Incidentally, in the Mayo Clinic discussion, it correctly says that exercise and healthy eating needs to be done if taking the drug, to have results of losing~7 over a period of a year.

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in reply to: Concerned about mood #1063078

I am the confused one! Sorry. But under the concerned about irritability post, I think I did respond with a long post to you!
Anyway, how are you today?
Shirley

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in reply to: Concerned about mood #1063075

Hi Christa, I just read your post again. Can you clarify the time periods? You mentioned that you had been struggling with medication adjustment for 8 years. At first, I thought you meant your replacement hormone, like Synthroid, trying to get your TSH T3 and T4 in the right range. Then, as I re-read it, I saw that your diagnosis of Graves’ was in September 2010, and that is when methimazole was prescribed. So it is the methimazole med that you and the endo are trying to get right at this time?

My experience after my diagnosis pretty much reflects yours, plus Bobbi’s explanations are so good, kind of describing how the whole deal works. I do like her analogy of a hurricane. When I was toxic (hyper) I was pretty much a crazy woman in every aspect of the worst of Graves’. Heat intolerance, sleep deprived, voracious appetite, weight loss, anxiety, irritable to the point of not being rational-and extreme tachycardia (rapid heart rate) consistently running ln the 160’s. And it DOES take a while to feel like you actually will have a normal life again. Like you, I felt MUCH better pretty rapidly with the ATD (anti-thyroid drug) and the beta blocker (propanolol) to reduce my racing heart. All I wanted to do was BE NORMAL again. After 2-3 months, I felt like a hit a brick wall. I was much better, but not my old self. Unfortunately, during this hyper phase, everything about our lives is messed up, and that includes psychologically. In my case, I was very impatient with everyone, including my family, myself and the docs.

BUT IT WILL GET BETTER! It sounds like you have a very good endo who understands all the components of Graves’. and I think he is telling you the right stuff. Since you have done a lot of reading, you probably know that when you get to a "steady state" or a euthyroid state, the term for neither hyPER or hyPO, you will have some decisions to make which will depend on your personal preferences, and how you want to tame the Graves’ tiger. Which is possible! You will see from the board that folks have chosen one of the three options to manage Graves’. Surgery, a thyroidectomy, RAI, or continuing with ATD’s.
Do continue to write, I think it really helps. It sure helps me!
Shirley

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in reply to: Husband has GD & wants a divorce #1063063

You do NOT sound off base, and I hope I am not off base with my response. These posts are supposed to represent our own personal experiences, so here goes. This is tough. I am sure you might get more posts about Graves’, and Kimberly’s has good suggestions. BUT. Your husband is 40, and seeing a 25 year old. This is a typical story of my generation, when in the late 70’s, (76-79) it seemed like all my friends’ husband were more distant (we were all in the mid forties range>) They got all weird, had affairs at the office, at the hospital (in my case) and it seemed to be rampant. In most cases, with a lot of therapy and a lot of forgiveness, the marriages stayed intact. All I have said has nothing to do with Graves’ directly. But it might be relevant, and making the whole thing worse.

It sounds like you are trying very hard, doing all the right things. My thought is that he is being very typical of someone who is projecting on you to justify his behavior. I am wondering if he is still hyper, and I know you have no way of knowing that, since you have no access to his medical records. I say that because his behavior, especially calling the police, suggests that he might still be exhibiting the crazy hyper behavior of Graves’.

Reflecting Kimberly’s advice again, is there ANY way you can find a good therapist, and convince him, under any kind of reason, the children, anything, and get him engaged in this? As I say this, I realize that at this time he is resistant to this.
I am so darn sorry about this.

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in reply to: I Choose RAI I-131 #1063435

Hi Susan, I think I have learned in the past day or two that it is better to begin a new thread, since we will not be talking about RAI. Although the subsequent posts are not about RAI, either!
So, I am not sure what to do. Hope the facilitators help with this.

Re neuro-ophthamologists. My experience is that when I was first recognized to have TED, the ophthamologist told me I needed to be followed by a neuro ophthamologist and a strabismus surgeon. I already had double vision and bulging eyes at this time.
I refer to my neuro-ophth doc as the "keeper of my optic nerves." This office did color exams, and visual field exams by machine, not by wiggly fingers. That is not good enough to test visual fields for TED. In my case, it was very wise for me to be followed by the neuro opth doc, for my color recognition of red began to change, and my visual field testing showed that I had decreased vision, especially in the left eye, and most prominently in the left peripheral visual field. I had no idea at all that my vision was decreasing. This was happening because of the swelling in the orbit, due to the fattening of the eye muscles, or fibrosing of the eye muscles, plus increased orbital fat. This, in turn, put increasing pressure on the optic nerve. And this meant that I had optic neuropathy, which meant that I could lose my sight. So it was necessary to do an emergent orbital decompression (OD) even though I was in the active phase. Then the pressure on my optic nerve was relieved, my visual fields returned to full. This is kind of rare, and I seem to be having the distinction of having one of the more severe experiences with TED. I have been seeing him ~every 2 months, or when I notice vision changes.
The other doc, I have seen aprrox. every 2 months, and that office monitors my double vision, which was horrible for me.
(The double vision, not the office!!! They prescribed prism glasses, which I have read on this site has been immensely helpful to some people, but they did not help me at all with my double vision. I had to wait about a year and 1/2 until it was concluded that I was not in the active phase, to have the eye muscle surgery (strabismus surgery) which changed my world for the better in a big way, enabling me to look straight ahead, and up about 30 degrees, with no double vision.

Perhaps your own eye doc is covering these bases, and/or you can ask him/her about seeing a neuro-opth guy, at least to get a baseline. It is my personal opinion from my own experience, that the visual fields by machine are important when in the active phase.
Do write it I have not been clear with my answer.
Shirley

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in reply to: I Choose RAI I-131 #1063432

Hi Jules,
As veteran Synthroid taker, this is what I have learned. I would like to think that you are told these things by the doc orpharmacist, but want to be sure you get off to a good start.
1. Take first thing in the morning on empty stomach. What works for me, is having a glass of water and the pills by my bed.
2. Wait 1/2 hour before eating. I put cream in my coffee (yes, I greet every day with a cup of coffee (:. So it works pretty well for me to do the routine I have suggested.
Also, do not take vitamins or supplements until four hours after you take Synthroid.

You did mention you were beginning the med tonight, I think? I suggest taking it in the morning. I don’t think this is a totally critical path, but I think that is the best way. At any rate, the most important thing is to take it on an empty stomach, following the rules above.

You probably will notice changes in how you feel, before the labs reflect them. So hopefully, your endo will consider your labs, which should be at least every two months or a little longer, with how you are feeling. If you have noticeable symptoms one way or the other, you should call him, and he will probably order an extra lab to see where you are.

Re TED. It sounds like you are in the active phase of TED. I am glad you are seeing a neuro-optho. Be sure to ask about
the prednisone. I have been having a LONG battle with TED. Perhaps you can use the search engine to look at some of my other posts, and/or put TED in the search engine. My own experience with prednisone, is that I had it a couple of times, with the LONG appropriate taper each time. I had 60 mgm q. day for a month. I hate the drug, how it made me feel. It was given to reduce the swelling that was beginning to compress my optic nerve. Following that, I had a couple rounds of Solu_Medrol IV (intravenous) for the same purpose. I had very slight improvement of my double vision (which was terrible) while on the pred, but it came back w when discontinued.
As I went through the active phase of TED, I was also seeing an eye surgeon, fairly frequently, who did a lot of different measurements. Ultimately, the eye surgeon did strabismus surgery (eye muscle surgery, which they move the muscles of the eye, purpose is to help the double vision.) I had that fairly recently, and it has helped a lot. Feel free to write with more? about TED.
shirley

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in reply to: Concerned about my irritability…. #1063067

Hi Christa, nice to meet you. I hope my post is not too fragmented, but there is a lot to think about for you!
1. Zoloft. Sorry you had the experience of discontinuing the drug abruptly. The doc and the pharmacist let you down, but not fully educating you about stopping any anti-depressant. They need to be tapered very slowly. But since you have been on Zoloft a number of years, I question if that is the cause of your feeling zombi-like? Don’t know, just wondered what you thought.

About Synthroid. My experience with my endo is to be very very conservative before making a dose change. He likes to wait at least ten weeks, prefers 12, for a lab. i am to call him if my subjective symptoms are really changing a lot (getting really hypo, getting really hyper, fast pulse, anxious jittery, and I just know I feel newly crappy. Then we do get a lab, and usually discuss together what to do. The thing about Graves’ is that it TAKES SO LONG to feel the changes, and pretty darn long to have the labs reliably reflect what is going on to responsibly make the changes.
I want to be sure that you know it should be taken first thing in the morning on an empty stomach with water. My strategy for this is to have the med and a glass of water by the bedside, and if I wake up in early morning, I take it. To combat remembering if I did/didn’t, I have the bottle upright before I take it, and put it on its’ side after I take it. Of course another way is to have a pill box with the days. And vitamins and calcium supplements should not be taken after Synthroid for at least 4 hours. I say all of this because at one time i was taking it on a full stomach, empty stomach, etc, and the reslt was that the labs were not reliable from blood draw to next blood draw.
Gosh! Any way you can make this easier on yourself by having the labs drawn where you live, and faxed to the endo?
I hate to see you without any Synthroid! I suggest you call the endo office, explain that you have NO MED! I am sure he would not want that! This sounds like a communication breakdown, and a bad one. If she wants you to stay on the meds, you need a refill. Was it written for only one month with NO REFILL written on the bottle. Any chance for a misunderstanding here? So, my question to you, is what can you do to resume taking the med? Plus, the labs won’t tell anything, because you have been off the med for a week.

My dear, you have your plate full with 4 kids under 8. I have no idea if this will help with the conflicting feelings you have about wanting to get stuff done, and thinking about it when you are with your kids. But here goes. When I had little kids, I had a good friend who had three kids, all of them under 6. Audrey made herself crazy by cleaning, sorting, was irritable, felt guilty for yelling,etc. I, on the other hand, was so laid back, if I didn’t get the baby and the 2 year old dressed for the day, I was fine with it. One day, at the playgound, another mother told us she was a perfectionist, until one day a friend asked her if she wanted "Her house was clean" on her tombstone. That really helped her let go of a lot. One thing that helped me, was to "lay out" my kids clothes the night before so I did not have to think in the morning. (except for the days when I did not dress the younger two! ” title=”Smile” />
I think Bobbi gave some good advice with the "I feel, I am" statements. Better than ones that begin with "you." But I know what you mean, and I have "been there." I was hyper+++ after my first baby, went undiagnosed for almost three years. it was hell, and I felt like I was the mother from hell, and terribly guilty.

I do realize the constraints of a small town and the commute to see the endo, and all the complexity of doing that with 4 kids. But it is not really a bad thing that he wants to see you. Lots of people on this site would envy you!
I know this is long, I really want to tell you I do understand, and can relate. Each day seems like a year until we get this Graves’ tiger tamed.
Shirley

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in reply to: Anxiety, hormones and THAT TIME of the month? #1063088

Hi, MisLes!!
I am glad you found this board. How said that you have been hyper with Graves’ for such a long time! THere needs to be so much education for primary care physicians, re Graves’. With the symptoms you had, the first doc you saw five years ago should have ordered a thyroid panel that day. I am so sorry that you have had this too common experience to go undiagnosed for so long.

By the way, you did not type methylpredisone by mistake. You wrote the right drug, Methimazole.
I have some questions for you, some of which Bobbi has already mentioned.
1. Are you being seen regularly now. with thyroid labs drawn? Assuming you have been taking the beta blocker and antithyroid drug since August, have the labs improved any?

I’m just writing out loud here, trying to think through how to help you with feeling so crappy related to your menstrual cycle.
Here’s one idea, It would be wise to check with the pharmacist and doc about it, but it sure has made a difference in the women i know. Try taking primrose oil. My daughter and her two daughters get their period at the same time, and during ovulation, and especially when they have their period, the household is an emotional battlefield! Amazing to me, they all starting taking primrose oil, and they say it has made a VAST difference for the better, and John, the only male in the household, agrees whole heartedly!

The treatment phase you are doing now, is to get you out of your hype phase into a euthyroid state, you should definitely be having good communication with your doc about how you feel and the labs. The doc may need to change the dose of the meds. Maybe you needs your meds adjusted.
Propanolol is given to control the physiological anxiety associated with hyper, ie., fast heart rate, excessive sweating , and the more typical feelings of anxiety people feel before take a big test or have to speak in front of a large group of people.

As you may have learned from reading a few posts, it can take a while to get back to the normal you. But it can, and will happen! Really. It is essential have a doc who really is familiar with Graves’, and who is supportive. Remember, there is an end to this where you feel like you again. the first step is to get out of your h
yper phase.
shirley

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in reply to: 3 months post op #1063101

Way to go, Ruby!!! Happy New Year! So glad your eye symptoms are mild, and not ruling your life!
Shirley

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in reply to: 3 months post op #1063099

Hi Ruby, nice to hear from you! So glad you are doing well post op. I had the same positive experience with my surgery. No doubts, no regrets with my choice.

I tried to scan your earlier posts, to see how you have been doing with TED. Did you have any TED surgeries? Is your favorite eye drop still (I think you said Systane in the purple box…?) Do you plan to have strabismus surgery for your double vision? I did, last September, and it changed my world in a very good way. Are you eyes very photophobic? The tears, light sensitivity and dry eyes are still big problems for me. I still have double vision looking up more than about 30%, and also looking to the extreme left, but the strabismus surgery was easy, and I can look straight ahead now. A huge improvement, and life changing in the world of social interaction, looking at people. Plus, the muscles in my scalp, neck and back are not in spasm all the time. I am going to physical therapy to get help in recognizing my normal, before-TED head position. I had to use my downard vision to look at anything before the strabismus surgery.

Re the statins and your lipid panel. I am not aware of any relationship between them and Graves’ and/or post op after thyroidectomy. Was that an additional comment, or do you believe there is a relationship> Just wondering..
I think your goals of food moderation and exercise make a lot of sense before getting involved with statins (as you said."

Thank you for stating the two things you have learned. I think it will be very helpful to others on the board. I do think Graves’ and TED have definitely been life changing for me, and there is no way I can it is in a good way. But I have moved to the "it is, what it is," stage, and I am grateful for the health insurance and assets that I have that has allowed me to get three surgeries, plus two more for 2011, and all those labs and appointments. Even the eye drops and ointments are super expensive, and they must be gotten over the counter. I hope the need for them decreases after my next two surgeries on my eyelids. I am looking forward to an improved outcome, but sure not looking forward to the surgeries.
Nice to hear form you! I just read the Phoenix has SNOW! That must be a big surprise!
Shirley

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in reply to: Susceptible to other things?? #1072072

Hi, welcome to this great site!
My though is that this has been your unlucky year to "get stuff." Not sure how long your "whole life" has been, (: But I’m thinking
that you are still a healthy person. I suspect if a large number of people were asked about their health over a number of hears, most of them would be able to remember a year like you have experienced.
One that that is not clear in your post, is if you are/are not in a euthyroid (optimal, normal) state with Graves’. ARe you currently hyper or hypo, or just fine?
Re the herpes simplex virus, outbreaks tend to vary over time, even within an individual. But when your body has been stressed by viral illnesses, etc etc, they tend to increase in frequency.
Re flying. Leg cramps may be related to the distance of the flight, and I think they are probably related to sitting in the tiny, crowded seats, being fairly immobile for the duration of the flight. Next flight, try to get an aisle seat, get up and walk and stretch during the flight.
Do write again, I presume since you are seeing your endo in a couple weeks, that you will have more current lab info relating to your replacement hormone. In the meantime, are you having any readily recognizable hypo or hyper symptoms?
And, Ski had a good reply in the last post!
Shirley

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in reply to: checking in/questions re: TSH level shift #1063106

I am not sure how to use that as a reference, because the range differs in different labs and around the country. Although the normal TSH ranges are not vastly different, small increments are relevant in this particular test. Just a thought
Shirley

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in reply to: Hyperthyroid & Perimenopause #1063230

Hey, Tracey Ann! You did the wise thing. When you have Graves’, you always have it, so good to check in with endo and get labs. Lots of your symptoms, plus your labs, say you are hyper, not a happy or healthy place to be. So glad you are following
up pronto!
I think your labs have told you the answer to how you are feeling. As Kimberly stated, hyperthyroidism is a place you DON’T want to be, for the reasons she stated. Follow with your endo, and with us! (:
shirley

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in reply to: low tsh levels after total thyroid surgery #1063109

First, I have a comment about your possible regrets about your surgery, which you are wondering if that is the cause of your present concerns. I know it is easy to look for a reason when we have to mess around with thyroid doses to get to the right spot. But, in your case, you probably did exactly the right thing with the surgery, where the other two choice might not have been a good choice for you at all. That is because when you have SUCH an enlarged gland, it is sometime necessary to resect it surgically, for it is pretty crowded in the neck, and our bodies have us arranged for organs to be a certain size, and when they get much larger, they compress other structures, veins and arteries, and that is a big problem.

But, I realize that was a passing comment, and not why you are writing. Bobbi gave a very good response for you, with lots of good information that you may have to read many time so you begin to understand how all this works, and so you own this knowledge. A once over lightly read is probably not enough, and it may seem like jargon, until you see how it all works. I agree with her that you doctor sounds very knowledgeable, and he is trying hard to get you to the right place, making very small adjustments in your meds. I KNOW how frustrating this is, especially when you do not feel well. He is doing the right thing by having your labs every 2-3 months.
My experience is a bit similar to yours. I have had a suppressed TSH for a long time, we have that in common. But I felt fine. For the reasons Bobbi mentioned, osteoporosis and also potential cardiac issues, my endo wanted to lower Synthroid. We did that, but my TSH never did budge. I felt worse, though. Now we are increasing it, I feel a bit better.
YOu have the opposite problem, with too much thyroid, so he is carefully trying to lower the dose. Plus, you have symptoms of feeling hyper. So he is doing the right thing, and I think you have good reason to BELIEVE you will get back to feeling like your old self, before Graves’, when the dose is right. That will be determined by your labs and how you feel. I wish you the BEST. Maybe the posts you get will help you feel that there is less jargon from the doc, but it is a subject we simply need to learn and understand, and it is NOT simple!
Shirley

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