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in reply to: Newly diagnosed hyperthyroidism #1183941

Hi Jinna, welcome to our exclusive club! We’ve all been there. We’ve all felt like we were crazy, and have all been irritable and short tempered. It’s hell, that is for sure. I felt that way, I know exactly where you are with all this. You are female, and this fits. It is hell. It all goes away when you are treated with the right things! When you feel like your normal self, then you can make further decisions.

I think you will be VERY reassured when you see the endocrinologist.
Having a rapid heart rate goes along with all there other symptoms you are having. Generally speaking, the heart rate will be treated with a beta blocker, which is a med that slows your heart rate. Hearts do not appreciate beating that rapidly! (:The doc will explain it. Most likely, you will begin taking an anti-thyroid medication, and within a week or two, you will actually believe you are going to be ok. and you will feel like “you” again.

This is a medical condition that you can learn about. Definitely you will be better again. Do not mess around with any online supplements and all that stuff.

Just to echo what Kimberly said, avoid seaweed wrap, kelp related snacks for the reason she stated. Otherwise, eat a healthy diet, as you probably do now. You don’t need to add another stressor to your life right now worry about food, if you generally eat a healthy and well balanced diet you are fine. You may want MORE to eat. I had a voracious appetite when I was hyper (kinda enjoyed that!) and could eat anything I wanted, and lost weight. But not a good way to “manage” weight loss! that is for sure.

Jinna, the important thing for you to know is that you ARE going to be fine and one day this will all be behind you. Really, truly!

Do write again. I’ll be watching for your posts!
Shirley

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in reply to: Does anyone have any kind of excuse from work because of this disease? #1183918

I sure do understand this one!

I suggest getting a note from your doc, then going to Human Resources to explore your options. If they have FMLA, that is a very good option, for it would specify the length of time you could work and what you can/cannot do. If they have that department.

I do understand your dilemma. I had little success with this, and I was working in a university hospital. very little compassion or understanding from co-workers or supervision. I think it is because there is little understand of Graves’

And, unfortunately, to be fair, before I had Graves’ I knew nothing about it, and I went to multiple docs who did not think of it, either.

I had FMLA for another reason (chest surgery and injury) and it really helped me keep my job as an RN.

Shirley

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in reply to: OCT test #1183930

I agree with Liz and the others. I have never heard of the OCT test related to TED or Graves eye disease. I would definitely ask why, or better yet, go to a different eye doc. Increased ocular pressure is further confirmed by an orbital CT scan, as Liz mentioned.

Shirley

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in reply to: Share your Success Story! #1183857

Hi James,
I am so glad you are doing so well! Maybe you WILL go into remission! That would be great. It is nice to know that it is not ruling your life!

And, you getting Graves’ sounds like a good thing, and a timely wake up call for you, which will contribute to a longer life, a better blood pressure, a strong heart, and joints that are much happier!

I cannot imagine eating the amount of food you ate. Nice you have changed your food consumption. And yes, it is fine to cheat once in a while. It’s just that it is good to define cheating,(very small amounts, and no repeats!) and have a little treat. All this you already know. So…GOOD WORK!!! This is great. I am sure you can help someone else, as you undoubtedly already have, by writing this encouraging post!

Shirley

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in reply to: Anyone out there who has had IV steroids more than once? Left eye for vision loss 2012. 2015 all over again in my right eye. #1183884

Laura, my own experience, plus general knowledge about steroids, is that they have their place in certain treatments, especially for short periods of time. But they should be prescribed with lots of serious considerations because of their side effects. Really serious and concerning side effects.

Steroids usually help. In the short term. Most likely you will always respond positively, i.e. improvements, in the short time after you have a course. But that is their use in TED. To prevent optic neuropathy, ie. permanent damage to the optic nerve because of pressure on the nerve. It is used to keep your/my eye safe until an OD can be done. Having said that, it seems you are getting very good care. None of us want any of these procedures, most of all an OD, which is a significant and complex surgical procedure. But we need it, when we are special people, and it seems that you and I both special people who have severe TED.

If you have a little time, (well, a LOT of time!) read some of my old posts. As I write today, many years later, my eyes are very light sensitive, must wear sun glasses, prisms in both lens of glasses, eye drops are my bestest friends, eyes are always dry, and one does not close at night, have to tape it closed.
What is good about my life? I can read well, I can drive and I can see and no double vision. I’ll take it!

Do write with any questions, or call if you like.
Shirley in SEattle

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in reply to: Well, here goes! #1173721

What FUN! AzGuy has resurrected some of us old timers!! Hi, nice to hear from you genuineruby!

I have found that the best thing for me is to be consistent, with whatever I do with food. Coffee is my best example. I nave consistently never waited any amount of time for my coffee. I did not know, or think about walnuts,either. But I think it is years since I have eaten them.

My biggest issue is continuing to remain slightly hyper by labs, but feeling hypo, most especially tired and much fatigue. But this is hard to separate from the factor of getting older…and older…and older. If I had not developed atrial fib a couple years, ago, I would definitely take more Synthroid..as it is, I take 100mcg 6 days/week, 112mcg one day a week.

Graves’ (and TED) changes our life for the rest of your lives, that is for sure.
Shirley

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in reply to: am I psycho need a mental ward…please help #1183700

Briefly..
to Kathy-good questions with complex answers. And with the usual reminder that we are fellow patients with Graves’ or TED (thyroid eye disease.)

1. the kinda simple question. Graves’ is most usually hypERthyroidism. Not always, but that is the most common. Thyroid gland cranking out too much thyroxin. That is my understanding. But there are some other things it could be. I did not check to see if you have written previously, so do not know your history.

2. Menopause ALWAYS complicates our lives. Graves’ or no Graves’! It just DOES. It does not have an assigned role in Graves’. Graves’ happens to male and female, old and young.

3. Because of #2, your question about mood symptoms is tough to answer. Probably is not a good answer. But briefly, if you (we) are hyper, our heart rate is fast, sometimes our hands have a tremor if you hold them straight out from you shoulders, people are volatile, short tempered, which is especially noticeable when this is not their baseline. the Mayo clinic reference I hope i remember to note at the end of my post is a nice summary. Also, this website has GREAT reading material.

4. No, levels generally do not change abruptly. That is why labs should not be done too frequently from a dose change. Better to wait 8 weeks. It takes a whole for the body to reflect what is really happening with thyroid production.

good night! glad you wrote!

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in reply to: Cancer and Graves Disease #1183662

Holy Cow, Allie!
Thank you for writing clarifications. I am so glad you are being followed by end and cardiology, and there is some continuity of care and concern for your very difficult medical stuff. Gee whiz. What a history! I am hoping you and the two docs can make sense of all this, and FIX it. I am so sorry. This is so darn difficult. I just finished wearing a Holter monitor for a (very long) WEEK! You may end up with one of these, with the purpose of catching and recording some fib. I had ONE episode, lasting a day. Long enough to have the diagnosis, and now I am on warfarin (Coumadin) and sure wish I weren’t.

I want to write more, but not tonight. Too tired. Also will send a brief PM to you on topic unrelated to Graves’. Might be refreshing! But for tonight…
good night
Shirley

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in reply to: Total Thyroidectomy, still Hyper? #1183706

Ellen, I realize you are giving some anecdotal stories of the experiences of other people. So there is lots of room for error and misunderstanding. For even when we are writing about ourselves, it is through our own eyes and subjective experiences.

But it would be very unrealistic and probably is a misunderstanding, that this person had to have an emergency thyroidectomy. It simply does not happen. Nor would this procedure be a life saving procedure. There is information that is missing in this story or misunderstood by someone.

Of interest, historically, Graves’ has been treated with SUB total thyroidectomies way longer than with total thyroidectomies. As a result, many people with Graves’, including myself, were euthyroid (normal labs, felt great) for many, many years, and sometimes for the rest of their life. Because the overproduction of the thyroid hormone was greatly decreased back to within normal lab limits. It is only in the relatively recent past that total thyroidectomies came into fashion, because the medical practice change, thinking it is easier to manage the anti-thyroid drugs if the entire gland is gone.

Having TED is not a contraindication to have a second surgery. Of any kind.
They are two separate, but related, endocrine diseases.

It does take a while to get to that sweet spot, that is for sure. Longer than we want.

I hope you generate some good questions for the doctor you see today, and definitely generate clarify what I have said here with your doctor. Elizabeth14, if you really want to know if some thyroid tissue was left behind, ask for a CT of your neck. Did his comment regarding some tissue could have been left, kinda morf out of your frustration of not being regulated yet? There is an easy way to know the answer. Ask for the dictated note by the surgeon. That is your reliable source. They always have to be careful with this surgery, cause they have to be super careful not to bother or resect the parathyroids which sit on each side of the thyroid gland. AND please check this with your doctor, but generally the thyroid lab is not reliable until AT LEAST 2 months after the last medication change. Yes I just another person with Graves. I am sure it will settle down for you! But the frequent labs can mess up the dosing regimen if you don’t wait long enough for the body to acclimate to the change. I hope you can check this out with your docs. You WILL be better, and feel like you again.

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in reply to: Double Vision #1183813

Unfortunately, I have not heard of double vision getting better on its’ own.
Everything Liz1967, said i agree with, and had similar experiences. Same stuff.
OD’s can make double vision worse, or cause double vision. That is why I have been reluctant to have my 2nd eye done. As you see from the end of my post, the strabismus surgery I had is the one that helped me. Just like Liz. I had the press on Fresnel prisms, too, many strengths, but hey we temporizing measures, and as she said, it blurs your vision. Unlike Liz, I do have prisms ground in my glasses, and I am delighted with this But this is long after I knew my eyes were stable. she is dead right about the prednisone. It is temporizing measure, which in a way, gives you hope, for there are a few days relief from double vision. But it is very risky, never given over the long term for this, and when it stops, double vision returns with a vengeance.

I had the same array of eye doc she had, plus a pediatric ophthalmologist, who did the strabismus procedures on both eyes. That is what saved me. I am happy to pay for the prisms ground in my glasses, for I can barely stand it without them. And lucky that I am able to pay the extra money. I don’t know how it breaks down.
This is a tough, tough road to travel. Believe me! I guess I’ll be traveling it the rest of my life. The thing that worries me is if I cannot care for myself, with the array of eye drops, ointments, gels and having to tape my eyes at night.
Shirley

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in reply to: Graves- Doctor says its time for RAI #1183654

Hi slem3,
I suggest you speak with a surgeon about a thyroidectomy. Not sure who mentioned it, but if it was endo, INMO they are not a bit qualified to make this judgement. Not sure which doctor told you that your thyroid was too big. Sounds like you are open to good information about both options. And my other post to you.
It is very hard, at your stage of Graves’ to believe you will EVER feel good again..but you will.
Shirley

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in reply to: TED (thyroid eye disease) seven years later #1183630

Liz, so glad you have the OD’s behind you! I found the recovery hard, but a piece of cake compared to the grafts from mouth to lower lids. THAT was a big mistake.
I think I would profit from an OD that did not have one, but I am so burned out on surgical procedures, I will have to think about it a long time. Not sure I am willing to take any of the risks…like double vision again. Plus, I am now pretty old! (:

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in reply to: TED (thyroid eye disease) seven years later #1183628

Liz, thank you so much for taking the time to think about this and write!

Yep, tried them most, not all. Main problem stems from the combination of severe TED with two failed surgeries, grafts from the hard palate to lower lids, intended to elevate them. Instead, the whole situation was made much, much worse.

Guess I am jaded on any surgical intervention now. I’ve had so much! But not cautery. I will explore it. Yes, steroid drops help, but long there use, even a couple times a weak, is contraindicated. (I LOVE steroid drops!) When I am in severe discomfort, I use them now and then.

Thank you so much for your thoughts, and I will make an appointment this week to see if I am a candidate for cautery!

Shirley

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in reply to: am I psycho need a mental ward…please help #1183698

pj-
you’ve got THAT right! It is one hell of a disease. And much harder to have than something obvious, like a broken bone, or being blind with a seeing eye dog.

Plus, few people understand it at all! I found it very helpful in the past, and every day now, to realize that before I had Graves’ I had no idea about it, or the implications of it to myself or to others, at work at home, on the bus, and everywhere. Not a good feeling to feel out of control and feel crazy. That is the way I felt.
So, I remind myself every day that I used to be one of those people, who had no understanding. And I am in the health care field! Believe me, reading a few pages on endocrinology and they thyroid, provides no compassion or understand of what it is like.

There are people who do feel that diet changes make a difference, or even help. I am not one of them. I don’t think it makes any difference at all regarding Graves’. But it is fine for people who do believe it, and I imagine varied people firmly believe in different diets. The only thing to really respect regarding food and Graves’, is that some foods contain a lot of iodine, and it is good to have them in moderation. Seaweed and kelp have more than most, and it is generally not a routine part of our food regimen. Dairy products and fish also contain it, and it is essential for us to have it.

This is me:
I eat what I want to eat, and follow no special diet at all. Other than I am eating less meat than I grew up eating, and this just sort of evolved. I grew up in the Midwest, and we had a big locker full of meat. The only fish I saw was tuna in a can, and an occasional catfish. Now I live in the Pacific Northwest, have many more choices, and I grow vegetables in every patch of dirt I can find in my yard. I find that carrots, especially, taste a lot better when I grow them at home. Ok, enough about eating!

You are absolutely not alone! You meet a lot of cool people on this forum, and the one time I went to the Graves conference in San Diego a few years back, I got to meet some of them in person! You have a whole new community, and a ton of new friends. Some of them read, and do not respond for a while, and others will write.

Best, from Shirley

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in reply to: am I psycho need a mental ward…please help #1183695

Hi pj, that is a terrible way to feel. Been there.
I felt that way when I was hyper with undiagnosed, and newly diagnosed, Graves’
Then, I felt that way again when I was on too much Synthroid. Kimberly’s post gives you a beginning way to go.

Can you call whatever doc you see office, ask for order for thyroid labs so you can get them done today? Or tomorrow?

There is a lot that is not clear. You were diagnosed for two years.
The following are what you should know and understand about yourself, and have a clear picture that you can tell someone else.
1. What has happened in those two years?
2. Did you have a partial or total thyroidectomY?
3. Did you have RAI?
4. Were you on methimazole when you were first diagnosed?
5. Did these symptoms change after your dose change, or before?
6. Does the doctor who is managing your Graves’ KNOW ABOUT THIS? Does he/she know your symptoms?
7. Is your doc a primary care on endocrinologist? A 2nd opinion might be in order.
But you want to be seen soon, have the labs, and your doc should definitely know your symptoms…pronto. If this is a possibility or option, I would just show up at your doctor’s office, ask for lab req and go wherever you can have them drawn. I imagine the office personnel can do it. But to have ll this happen, you need to be an established patient, and have a pretty good relationship with the doc, who knows you very well. If the doc does not know you’ll, they will not be able to help you immediately. Or you conceivably end up in the ER again, and that is not optimal for you, and also super expensive. Your history is critical of you to have good care.

As Kimberly said if you had the procedures in #2 or 3, it is possible that not enough of your thyroid gland was radiated or removed.

You might also be hyper because you are taking too much thyroid hormone.
You might be hyper because you had no treatment, and were not taking ATD’s anti thyroid drugs.

I know it is later on Friday, and doubtful you will be seen this later in the day. Not sure what part of the country you live in. And you may be working now.
You should also know your heart rate and blood pressure.
Your feelings are NORMAL for being hyper. When you are treated properly, you will be your regular person again.

If you have Graves, it is for lifetime, as you know, and all of us need to pay attention to ourselves, and have a good and trusting relationship with a doc who understands graves. AND we have to do our part, too.

I sure hope you feel better and get the help you need, soon. Again, you are not crazy, you are hyper most likely.

Please check back over weekend
Shirley, another Graves’ person

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