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in reply to: Radioactive plumes headed for west coast #1062455

I suggest you continue to check reliable resources regarding this matter. From what I have learned, it is a non issue, with 5000 miles of ocean, even of all four of’em blew up. There is more harm from using K Iodide with no reason and rationale So those are my thoughts, based on what I refer to for news and information.

I sure wish I were flying tomorrow! And I would love to have sushi with you tonight!
Shirley

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in reply to: Acupuncture/Chinese Herbs #1062639

Thank you, Honest Babe! Interesting stuff.
It is CRITICAL that all who read your experience, do realize that you DO NOT have Graves.
Thank you very much for emphasizing this in your posts. Probably a good idea to mention that at the beginning of every post. You (and I, and everyone) would not a reader to make a quantum leap to try your strategies when they had Graves’ and their hyperthyroid state needed treatment with ADT’s and beta blockers to keep them safe from harm.
Good job!
Shirley

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in reply to: RAI and Toddlers #1062488

Hi Susan, it has absolutely nothing to do with having thyroid removed. It has to with having Graves’.
THere is some evidence that there is an incidence of eye issues after RAI. But this is emerging information. Actually, most folks with Graves’ have some degree of eye involvement, even if very minor. We did hear about that at the conference, and I hope Kimberly, Ski or Bobbi expand my answer.

But, unfortunately, I got full blown TED that has greatly impacted my world. The strabismus surgery helped get rid of most of the double vision, and that was a vast improvement. I had and OD to save my optic nerve, which it did (optic neuropathy, pressure on the optic nerve) but I had a complication from that procedure. As you know, lots of cranial nerves in that small space. There was some damage to one of the branches of CN VII (i think that is the right one) the outcome is that I could not completely shut my upper eyelid. Still working on that with upper eyelid surgery.

In summary, Graves’ and TED are related, and not everyone has TED, and there is a degree of TED from barely evident, to full blown TED.
Shirley

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in reply to: Over 60 years old and Cytomel #1062472

Hi Ann, I have not found one academic reference in 40 screens of Cytomel references on the internet.
All of it is pretty much anecdotal.

I think the two concerns I know, are that so frequently, it is prescribed only once a day. And the whole mater of the "dumping." And those are not huge concerns.

I totally understand how you feel, and I hope you talk with your endo and get back on it, based on your own experience. I am doing the same thing with Synthroid. I have subclinical hyperthyroidism, and know according to the labs and age, that my risk for cardiac stuff is slightly increased. But when I agreed to reduce Synthroid, and we did it right, around 12 weeks or so before a dose change, I became a zombie. Sounds like that is how you are feeling now. So I said, I will not live like this, let’s slowly increase the Synthroid, especially b/c TSH did not budge, regardless of the decrease in doses.
I chose the quality of life option, also! I still have more fatigue than I would like, and if Cytomel had helped with that issue, believe me, I’d still be taking it. The quality of life issue is critical. I hope you can have your discussion with your new endo very soon, and get where you want to be. It seems that you certainly have had enough experience with feeling good and feeling crappy to make an informed decision. And your labs are fine!
Maybe we both can work on finding a reasonable reference, if there is one.

OT a great profession! I am an RN, worked in neuro rehab, so you know how much I respect your profession!
Shirley

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in reply to: RAI or not? #1062528

Hi Renee,
Well, you are feeling much better except for GI stuff, but basically much better.
You have made a decision about RAI.
YOu have excellent thinking and insight in your endo, her pluses and minuses. You are ok with it. She is incorrect @ surgery as an option, but it doesn’t matter that much. You have your decision, and given the circumstances, sounds like it would take a lot more work on your part to explore the surgical option, and it is a good one. You know it is NOT a definitive treatment just by reading the posts on this site.

The heat flashes? My guess is that is related to Graves’. YOur endo is really new, with not a lot of experience, it seems.
I’d deal with what you have on your plate now. If the hot flashes continue, (and I know they are unpleasant) you can deal with them later (if they exist.)

In answer to your question, and of course, you will figure it out for yourself,….
but it seems there is:
– enough stress (husband’s anxiety, the fairly real possibility of getting hassled by TSA, letter or no letter)
-the fact that you just might feel more comfortable being home and available after RAI.
– YOur concern about the "dumping" is a real concern, and it could screw up your vacation if you feel like crap.

So, my vote is to postpone until you return from your vacation. Seems less stressful for you.
Shirley

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in reply to: Over 60 years old and Cytomel #1062470

Hi Ann, I don’t have a lot of time to post right now, but wanted to get a response going! Bobbi wrote one of the best explanations I have seen re Cytomel. My endo explained all of this to me (new endo) when I went to him, had been on Cytomel about three months (another endo, and primarily b/c I asked for it.) He said that having too much T3 or T4 does increased cardiac incidents, primarily atrial fibrillation. And that risk also increases with age. I can speak to this because I am older than you! Unlike you, though, who has no cardiac history, I do, for I have a bit of damage from all the chemo I had for an advanced breast cancer.
The first thing about Cytomel, which fits with what Bobbi says, is that we learned in the conference last fall (and I learned from my current endo) is that it should be a divided dose during the day. Not just once. The second thing I learned, was that there was a good rationale not to take it, but some endos will prescribe.

YOu did not mention your labs at all. ARe you getting them fairly regularly? I am not sure how long you have been off the Cytomel, but I suggest you give it at least a couple months, or 6 weeks, make an appointment now (cause it takes a while to get one,) to see your endo in 6-8 weeks and discuss the whole issue. My endo did say that a very few of his patients say it made a world of difference in a good way, and he is ok with it, but he wants a baseline EKG and cardiac echo.

In general, too much thyroid hormone is not a good thing for a heart, so important to keep track of labs. BUT also you want to have a life, and if you really feel like you are tanking in how you feel, get labs earlier than I suggested. However, weight gain (unless you are really going hyPO) is not a good reason increase thyroid doses, ever. But I am sure you know that.

Do write again, feel free to send a PM. So I don’t take Cytomel, right now I am at the right dose of Synthroid. But I am dealing with TED, which appeared decades after Graves’ first entered my world.
Shirley

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in reply to: RAI and Toddlers #1062486

TED can come anytime, even decades later, as it did for me. Graves’ age 24. TED in my seventies!!!!!! ): Dealing with it now.
Shirley

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in reply to: Newly diagnosed..do not want to take propranolon #1062515

i agree, Ken. It is critical and essential for mental and physical health to have a doc who "gets" Graves’. Lots of enods focus on diabetes, since everyone and their brother is developing diabetes. But there ARE endos who are very familiar iwth Graves’, who understand the relationship of labs and how you feel, and who realize that there is no mandate that says the way your feel must match your labs. This is a very complicated disease and complex disease process, and it is with us for a lifetime. You deserve a well informed doc, and a good working relationship with him/her.

There is a reference on this website of endos who specialize in Graves’. Check it out.

If you would like me to ask my endo (I am in Seattle, and go to the UW medical center here) if he can provide a reference of a couple names in your area, send a PM (personal message) telling me where you are. I have done this before and he is happy to help if he can.
Shirley

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in reply to: Newly diagnosed..do not want to take propranolon #1062512

Sorry you have joined this Graves’ club. But the end of the story is that you will go back to your "old self!"
I think you got some very good information from Bobbi, and I agree with what she said.
But I also agree with you, and understand why you are asking the question. It is totally reasonable that you question taking propanolol when your heart rate is 60. So your next step is to call the endo, tell him your pulse rate and BP, and tell him your concern. Ask if it will make your heart rate too low, which I am guessing is your concern. It is a reasonable question. There will be continuing need to have good communication with your doc, so this is the beginning.

I can tell you from my own experience that when I call my endo, (in my case, we do email also) and it such a reassuring feeling to know that he respects what I have to say. Also, it did take a couple changes to find right person.

Since the incidence of Graves’ is much less in men, it will be helpful for you to check out the search box, see if you can find posts by men. I know they are there, but not sure what words to use. Maybe male is a good start.

How are you feeling? Are you familiar with some of the typical feelings of hyperthyroidism? As you take the ADT’s (anti thyroid drugs, you will feel much better.) But as Bobbi said, the stress and danger to your heart is a real one; that is why a beta blocker is prescribed. After you talk to your doc and get a plan and understanding and rationale for taking the drug, you will know how to manage it.
Do write again with an update.
Shirley

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in reply to: What to make of my levels…. new to graves and prego! #1062535

So glad you wrote, mama bear! Meant to mention you on my last post. Sounds like your are doing well, other than the extremely busy life of being a mom/wife/taxi driver/keeper of animals. I am sure that it will be nice for you to keep in touch with Renee.
Shirley

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in reply to: What to make of my levels…. new to graves and prego! #1062533

Hi Sarah, well, it is good that your ob doc ordered thyroid labs. As You did not say much about how you feel regarding symptoms of Graves’, but I am assuming that the Graves’ feeling of being hyper is competing with the pregnancy feeling of being sleepy? Although it is a bit early for you to feel the sleepiness of pregnancy! I remember falling asleep on the bus, and once I fell asleep at a red light! If this is your first pregnancy, all my neighbors have loved the book "What to Expect When You’re Expecting." As Ski said, it is great that you have an early diagnosis. It will be important for your endo and your ob doc to be in contact about you. Sometimes, depending on a lot of things, a high risk ob doc is recommended. You can ask the question for your own information, but it sounds like you are getting very good care.

As you take the PTU, you may feel a lot better (less stressed, slower heart rate, decreased tremor if you have one…) but generally, better and more like yourself. I suggest keeping close contact with the endo, for he/she may want to reduce the dose. Ask you endo the general plan about that, what/when they want to hear from you. When we have Graves’, all of life is more stressful. It will be less so with the ADT.

Be sure you understand everything, and a good way to begin with two NEW medical conditions, pregnancy and Graves’, is to have the dictated copies of all your visits and all your labs. If you have not done this already, ask at the front desk of each office for a medical release of information form to sign, and direct that all visits and labs be mailed (or faxed) to you. Begin a file. In answer to your question about the labs, the normal ranges for your lab will be listed on the lab sheet.
As Ski said, we really can’t interpret labs in detail, but as you already know, your symptoms and your labs say that you have Graves’

If you have a question about being on bedrest for two weeks, call you ob and ask what activities you can do, and understand why you are on bedrest.

Regarding your job, at this time, take it a day at a time. You have had a big week! I think once Graves’s settles down a bit, you will be like anyone else who is pregnant. Maybe needing some dill pickles and some crackers, but basically, ok.
I would not make any decision at all about your job. It is entirely possible that you will decide to continue working, and as Ski said, there are lot of things to consider when contemplating this. Do continue to write to this site, it is reliable and trustworthy. There is a lot of cr.. on the internet, along with the good stuff.

I’d read Ski’s post again, for it is right on, accurate, and very helpful to you at this time.
Keep in touch with us!
Shirley

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in reply to: RAI update #1062530

Hi, nice to hear from you. By now you have had your appointment and your labs, so I hope you will post with a new update.
It sounds like you are not feeling hyper anymore. Isn’t it a wonderuf feeling?
Shirley

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in reply to: RAI or not? #1062524

HI Renee,
It is so wrong for the first person who saw you, not to have done a thyroid panel. I am so sorry. I do hope this physician remembers this, and orders the lab at the first visit of someone who has your symptoms. Fortunately, it is becoming more and more common for doctors to THINK of Graves’ when a person (and much more frequently, a woman) presents with the symptoms of hyPERthyroidism or hyPOthyroidism.

What a marvelous "reporter" you are, and how well you know your body. And now you know more, and have a diagnosis, which, I found 100% reassuring, rather than living in the undiagnosed and untreated limbo that I was experiencing (with all of the symptoms you experienced, and my heart rate was in the 160’s, which is dangerous.)

Bobbi’s post pretty much summarized all of us, and the struggles we experienced, with the outcome of regaining our lives, being in the "normal" population, and rarely posting on the boards. I am so grateful to this organization and the people in it,that I think I will continue to post forever! For I think the best kind of support is from people who are having the same experience.

As you learned from Bobbi, there is no one "definitive" treatment. Your endo may have said RAI, for no reason other than that is what she’s heard of, or she may have her own bias. I would like very much for her to have presented the three options in a neutral manner, with pros and cons of each. There are three options. Pretty much variables that contribute to which treatment, are the following:
***Personal preference. Some of us make a choice because we absolutely do not want the other two choices. THis is absolutely fine. Our reasons differ, and we do not have to defend them. Once we "own" the choice, there is usually a great relief in taking action that is right for us, and moving on with your life.
Surgery. My choice was surgery. I want action, I wanted it now, and to move forward as fast as possible. I had no interested in aDT’s long term, and I did not want RAI. I suggest you use the search engine, if you have not, and type in "surgery, or thyroidectomy," and read the experience of others. In the recent past, I have referred the posts of lhc11. Start at the beginning of her posts, and read how she arrived at her decision. Many on this site have chosen surgery. Thyroidectomy is not a complex surgery, but the procedure must be done by a surgeon who does them frequently. We learned at the last conference (my first) that the minimum should be 50 a year.

ADT’s-This is also an option, and it has worked well for some of us. If it doesn’t control Graves’, or if a person decides they do not want to do ADT’s long term, the other two options are always there. As Bobbi said, Kimberly is currently on ADT’s.
It’s possible that a person can choose ADT’s because, like me, they did not want the other two choices.

RAI-As you will see from the recent posts, this has been chosen, and people have been happy with it. Bobbi and Ski chose RAI. And, of course, the RAI folks are very happy with their choices, either because it was their first choice of the three, and/or they did not want the other two.

Better stop this post before it is too long.
Shirley

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in reply to: Oh boy, here we go again.. #1062544

Welcome, and a quick note, ’cause I am going to bed and have a very earlly flight tomorrow morning. Use the search engine, type lhc11, she has some great posts, and recent surgery. I had the surgery, loved it. I am not sure of your concerns about narcosis. This is an easy surgery when performed by a surgeon who does them regularly, generally about 45 minutes, there is little, not a lot of soreness, basically nothing. IT really is a good thing. Being hyper is TERRIBLE and dangerous!!! REally, this is a great site, you will have lots of conversations with us, and then you can help someone else.
Gotta go to bed now!!! Will write again…also, just put thyroidectomy, or surgery in the search engine.
Best, Shirley
Shirley

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in reply to: question about methmazole #1062551

Hi Suz,
My lab range for that test is 0.6-1.2. But yours may be different. Why? Because labs have their own normal ranges, based on several variables, and how their machines are calculated. So I am not sure if yours in in the normal range. On my lab, it would be. But that means nothing.

GOOD for you for being persistent, getting the doc, and accomplishing this today. The other part of the the doctor patient relationship, is that they cannot make decisions without information from you! So be persistent like you were today.
Good job. I am sure you will feel much better now.

There is absolutely no reason for you not get a copy of your labs when you have this next appointment. You should meet no resistance at all. While you are there, BE SURE to ask for the proper form to have copies of your records and visits mailed to your home. This should not be questioned at all. A perfect to begin your relationship with Graves’ on the right, and informed foot (so to speak!)

You may not realize this, or have the opportunity to have this experience, but I can look up everything about my medical record electronically. In some instances, it may not be posted until you have had a discussion with your doc, but not for stuff like this.
Get those records!

You will probably find that you will be started on thyroid replacement at your next visit, if your labs AND YOU indicate you are ready for that. After you begin a replacement, it takes about 6 weeks to 2 months to get reliable labs which reflect if you are not hypo or hyper, with the other major component being how you feel! For instance, IF you feel hyper symptoms again, you need to report that. If you cannot move, or get out of bed, report that.

Hope this helps you and is reassuring. You, like all of use, will be just fine, but patience is the name having Graves’. It is frustrating.
Shirley

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