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in reply to: kinda personal…but going to ask anyway #1064399

Bluewave, maybe a good time to come to Seattle, then climb Mt. Ranier, Tiger mountain and more, with that adolescent energy ” title=”Smile” />
Shirley

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in reply to: kinda personal…but going to ask anyway #1064396

It has been a long time since I was hyper or hypo, but I noticed a decrease in both instances, but i attibuted it to being sleep deprived and generally pissed off at everyone most of the time, including my husband, when I was hyPER, and when i was hyPO, I could barely lift my head off a pillow, felt like a slug, was always cold, and totally disinterested, much more interested in taking another nap!
I think, as it relates to hypo and hyper, it will be temporary. Having said that, there are million other reasons which can contribute to decreased libido, including frantic lives, wrong person, stress about other stuff, and getting older.

Ruby-not related to surgery at all in my experience. I have had many surgical procedures, including thyroidectomy.
Bluewave, I have no idea of the relationships of testosterone and Graves’ sounds like your doc doesn’t either!

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in reply to: Does it ever go away for good? #1064377

Hi mourning, are you still getting labs now and then? The first thing that occurs to me is that your Synthroid dose may be too high. I think current labs would be the first step. That happened to me, once. I had been on the same dose for years, and all of a sudden, it was too much, so it was very SLOWLY tapered, with labs spaced about two months apart.
From what you say, if nothing else is going on in your life to cause those symptoms, you could be getting hyper. What is your heart rate? Is it increasing. Are you still seeing a doc now and then for thyroid labs?
Welcome to the board, if this is your first time, if not, welcome back!
Shirley

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in reply to: Confused… in need of advise #1064382

Hi, I am writing as yet another patient with Graves’. No medical advice, just conversation.

This is a good question for your endo. My experience and what I am told by endo and neuro/eye docs, is that other than being supporting information that we have an autoimmune disease, these tests TSI and Trab, really don’t matter very much, and not at all when determining treatment of the PERSON. The TSH, T3, T4, p lus how we are feeling, determine our meds.

To put another way, from a quality of life and treatment point of view, it does not matter if there are/are not antibodies present after a thyroidectomy or RAI. But I realize you are just giving all the info you can.

Golly, I am sorry that both anti-thyroid drugs, PTU and methemazole, are not options for you. It sounds like you are going to well informed docs. There is so much different stuff you are dealing with! I did have surgery, did take PTU to get to a euthyroid state so that I could have the surgery. I was 24 at time. After the surgery, I got along well, remained euthyroid, regular periods resumed, and got pregnant (planned) about 5-6 months after the surgery.
Is your endo hoping that you become euthyroid again so that you can have the surgery? As he said, that cannot happen when you are hyper.

Seems like a good idea to go to the gyn doc, too. As Kimberly said, none of us are medical people, but patients who have Graves’ in all stages, plus thyroid eye disease. But one thought did occur to me. That is discussing with your gyn about taking pills to regulate your cycles, then you would know for sure when you were ovulating. But I really don’t know what I am talking about.

I am glad you are on this board, and extremely relieved that you are having docs who are following you carefully.
As difficult as Graves’ is to experience, either hypo or hyper, wanting to get pregnant adds a whole new dimension of complexity to an already complex life!

I do know that quite a few people on this site are in the same situation as you, trying to figure out conceiving and Graves’. The fact that you can’ take the anti-thyroid drugs is another confounding factor.
Welcome, and you will probably get more helpful posts that mine, and be hearing from our facilitators, who are wonderful.

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in reply to: RAI vs. thyroidectomy #1064424

Hi pinkphone, just a quick note to say that there is a lot of conversation on the thread lch11 referred to, with her own experience, also mine. Generally, we have a choice between the two options. I had the surgery, am glad, would make the same decision again. If you read those conversations, it may help you in your thinking.

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in reply to: Doc Inconsistency / TSH issues #1064402

I would like to address a couple things in your email and Bobbi’s.
Labs-some offices are happy to print them out and give them to you. THis is especially likely to happen if you get your labs drawn before your visit. But I did hear you about the endo’s reluctance to the labs. That is a puzzle to me, other than having labs too often, which does not seem to be the case with you at all.
Not sure if you had a thyroidectomy or RAI 12 years ago?
I can REALLY RELATE to the fact that you are at your best when your TSH is suppressed. I have the same problem. I diligently worked with the endo to reduce Synthroid for the past year. He was concerned about the two issues that Bobbi mentioned, cardiac risk, primarily a slight increased in incidence of atrial fibrillation, and bone compromise, with increased risk for osteopenia and osteoporosis. But as we reduced Synthroid, I turned into a zombie. My TSH remained suppressed, not budging from .001-.026 (range .4-5_ which I know is not good for me, but after having all the symptoms of extreme hypo, including massive GI impact, gastric motility of stomach slowed down so much that nothing left my stomach, and I could not eat for that reason. We agreed enough is enough now we are increasing my Synthroid, and I feel better again. But docs are not comfortable with this, because of the risks mentioned.

Suggestion. CAn you ask for a medical release of information form, sign it, stating that you want all copies of dicated reports of visit, and labs?? This is your right to have. Because of HIPPA, the patient confidentiality rules, most offices are beginning to conform to this law, which means offices will NOT release any information, even to you, unless you sign this form. You have to ask for it. Most offices do not volunteer it to you. The other option is that this endo is a total control freak, and you probably need to take the time and energy to find one who is interested in thyroid issues.
Bobbi asked you where you lived, and I have the same question. Much of what I have said about obtaining records applies to the US only, and I am not familiar with the policies of other countries.

At least, as you experience this frustration, you feel pretty good! That is a big plus, as being extremely hypo or hyper.
When I write, I tend to ramble a bit, but I think I addressed what I wanted to mention, the topic of getting your records and extreme understanding that you feel super good when you TSH says you have too much hormone on board.
Shirley

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in reply to: Newly diagnosed and only the internet for information #1064501

Coffee! The ritual of holding on to a coffee cup with one hand, the newspaper in the other, when I get up in the morning, is one of my favorites. Fortunately, the "moderation in all things" philosophy works nicely for me.
Shirley

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in reply to: Normal labs but feeling a little hyper? #1064451

HI lhc11,
You made my day!!! Thanks for seeing my post and responding so quickly. I just could not get that out of my mind!!!!
Shirley

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in reply to: Normal labs but feeling a little hyper? #1064449

HI, it has been so nice to hear from you after your thyroidectomy, and to know that you had the same wonderful post op course that I experienced.
I have one question. I know you said your resting pulse was normal for you, but 19-20 BEATS PER MINUTE? Will you take it again a few times, so I don’t worry about you? If, indeed this is your resting heart rate, you should be prepared to tell everyone you encounter in the medical field, or they will want to do a cardiac workup or stick you in the CCU while they do it! That is really low, hard to think it can perfuse all those parts of you that need oxygen. A heart rate of 50’s in someone who is usually very in shape, or even in the high 40’s.

Re feeling hyper. Kimberly, Bobbi have both addressed the fact that there is hormone circulating around after surgery or RAI. So that could be a factor in your hyper feelings, and should resolve? But I have no idea how long it can take to used up the stored hormone. They will probably have things to say about this.
shirley

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in reply to: Urine flow…5 yr old-Potty talk =) #1064466

Hi bfun,
it seems like the most obvious step to take is to arrange for a urine lab test and culture. If she has a regular doc, or regular pediatrician, how about calling the office, telling them she has frequency and/or urgency and whatever else you can report. Most likely they will ask you to bring in a urine speciman. That will rule in/out a urinary tract infection.
Shirley

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in reply to: Early TED how did it feel? #1064567

This is my experience, but at no time did any eye doc or myself think anything was wrong. You will see at the end how I was diagnosed with TED. Sorry, it is a bit long.

For about two years or more, I found that my vision was bothering me. Like the glasses needed to be changed YET AGAIN!
I got new rx after new rx, and I still had trouble seeing. The repeated Rx’s in glasses did not "help."
By that I mean that I had to tip my head to the side or back in order to have clarity. At that same time, my eyes got scratchy, thought i was having allergies for the first time, took claritin. Not much difference. The other symptom I had was increasing sensitivity to light, needing sun glasses more often. And my eyes would tear for no reason, then my vision was blurred cause of the tears. I was working as a recovery room nurse, and when we went online, the moniters were up high above the stretchers. I found that if I glanced up, I had double vision of the numbers. I then accomodated to that, by turning my head so that I saw one of everything. STILL BLAMING EVERYTHING ON GLASSES, CAUSE THE ophthamologist did. When I was going to get my sixth $600 pair of glasses, I was walking down the street, suddenly, for the first time,I decided to go to another eye doc about the tearing of my eyes. So I walked in to another eye doc, planning to make an appointment about eyes tearing, and he happened to walk out. He said, "you have thyroid eye disease do you know that?"
I told him why I was there. He said, "I am 99% sure you do. If you are planning to make an appointment, why don’t start now. Go downstairs and get an orbital CT, bring the CD back with you, I’ll take a look." I did, and it was clear that I had TED. (muscles fibrosed, explained why i could not look up comfortably.) He referred me to a neuro-ophthamologist and a pediatric eye doc. The neuro guy did thorough exams, followed me, did visual fields tests frequently with a special machine. The peds eye doc’s assistant tried to help me with prism glasses for my double vision, saw that office about every 2 months, doing measurements for the time that my eyes were not changing anymore.

The doc who diagnosed me held up two fingers on one hand, five on the other. He said, "this is a long haul. expect two years, and the possibility of five surgeries before you can decide you are done with TEd."]

This may be a lot more information that you need right now, but I could not figure out where to begin and end!
Shirley

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in reply to: HELP…Not understanding the Labs! #1064573

Hi Lauri, just to second Bobbi’s comments. It is the hardest thing I have ever done, since I want ACTION, ANSWERS, and to feel better NOW, but Graves’s just isn’t like that. I think you might consider Bobbi’s comments strongly, and I concur with lab frequency. My endo says that he does not have valid information enough to make decisions unless the labs are, at a minimum, six weeks apart, and he prefers ten weeks or longer. The same goes for how I am feeling and what is going on with me. Two, three weeks is just too soon, for the reasons Bobbi said. Worth thinking about.
Shirley

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in reply to: New Here #1064592

Hi Bobbi, your statement that being hyper hits us in all different ways is so representative of the vast continuum of the experiences people have when they are hyper. At work, my general mode has always been fast moving. But when i was hyper, it went to extremes BECAUSE I was hyper, for when it was time to go home at midnight, I was always HAPPY to stay later if needed. I knew that I I went home, I wouldn’t sleep anyway!
Gosh, I am reminded of how carefully we are monitered during a stress test, which is a very good thing! So glad they recognized you simply had to stop. It has been a great revelation to me to learn how many people with newly diagnosed Graves’ experience profound fatigue. I did not realize that before I joined this site. I marvel every day at how grateful I am that exists.
Maybe after TED issues calm down, and I sure hope they do, I will see if I have enough energy to begin a support group in Seattle. Right now, that seems daunting to think about.
Shirley

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in reply to: New Here #1064588

Well, you can clarify that with him tomorrow. There is a lot of discussion on this site about exercise, and frequently I think exercise is not defined. I sometimes worry a little bit that all exercise is assumed to be "working out." It does seem logical not to further push a body that is already in overdrive. I realize that you said you have strenuous exercise. It will be a nice exchange of information and understanding between you and endo.
I walk everywhere, my walk is my normal brisk walk that is part of me. When I was hyper, I was working full time as an RN on a busy floor, and always on my feet. I guess that is exercise, too, but I felt that this level of activity worked very well for me when I was hyper. Of course, I had no choice about work. I sure did eat a lot, though!
Just so you know, I was on PTU, liked being on PTU, had no side effects at all except feeling better, more like myself as the days went by. He will probably tell you some labs need to be drawn, so you can learn all about that at your visit.
Look forward to your next post! Glad you see him tomorrow.
shirley

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in reply to: Prednisone-What to expect? #1064724

Hi Meredith, Kimberly addressed a lot of good points. My thoughts here are to agree with everything she said, and add a few comments about TED. Re the prednisone, it is not common at all to be on pred for nine month re TED. Usually, it a month of 50-60mgm with the added taper at the end. SO GLAD you went to other docs who got you off the stuff.

Re TED. as you know, the symptoms you are having are some of the same symptoms of recurring TED. I do suggest to you that you begin going to a good neuro opthamologist who is familiar with TED (I think generally they, but good to check out names with endo folks, too. Get a good baseline eye exam. Are you still wearing prisms? I assumed from your email that they helped a lot four years ago, got you over the TED hump, and then your eyes settled down? Meaning, you got back to "normal" with no double vision, no tearing and photophobia, and all that stuff? That is surprising to me, for in the course of TED, the antibodies attack the eye muscles, and they become fibrosed, or sort of frozen, to a greater or lesser degree.
That is why we have the double vision,cause the muscles have lost their ability to stretch, or expand, when we look up, down, sideways or straight ahead, all dependent on which muscles are damaged. In my case, my downward vision is perfect, for the superior eye muscles have not been affected by the disease. But the inferior muscles, the ones that allow me to look straight ahead, and up, are very fibrosed, so that is where I had my double vision issues. Fibrosed muscles do not get better, I don’t think, the damage is permanent. After all the damage is done, and the vision is pretty stable, the measurements stable, for people like me, who do not want to live with this, the next step is the eye muscle surgery, or strabismus surgery, and I am looking forward with great eagerness to mid September when I have these procedures done. My upper oblique muscles are also slightly affected.

But-when I was hyper, I had no muscle or joint aching, not much knowledge or experience about that, so glad the facilitators are helping with that. Looks like it is time for an appt with an endo for labs, hopefully one who is a compassionate human being and understands all the components of Grave’s. As you begin this again, try to get your labs before your visits, so there is something to discuss when you are there.
Keep writing, this site, the people writing and the facilitators help a great deal in keeping me slightly sane during TED.
Shirley

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