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in reply to: Made decision for surgery #1178446

Hi Amy, nausea after sinus surgery is pretty common. I am guessing more common than after a TT.
And, as you have read, the experiences do differ. I think a recliner is a great idea! I am thinking of getting one. I am looking for one that is not so poofy and big, though, for my living room is fairly small.
Glad you have your help figured out.

I think you will do well with all of it.
Shirley

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in reply to: Thyroid Regeneration #1178367

This is a bit of a ramble.
I spent over an hour reading “studies” this morning, all related to this general topic. Many were in PubMed . Many had a population of 23-60 people, and drew conclusions after 4-9 years. Now I have some comments for thoughts and consideration about references and studies. In the past, I have also been on a committee comprised of citizens and health care professionals, who review proposed studies, and frequently we critique them with major flaws, in the study design.
There is a lot of pressure to “publish, especially in the academic realm.
I did a health care related study for my Masters in Health Education and Policy.
Everything about my study is outdated and inaccurate now. And my committee did a pretty good job of tearing it apart on a regular basis, and having me tighten it up and re-write it about 9 million times.

There is a TON of difference between long term, longitudinal studies with a large sample population, with skilled investigators, with the variables carefully controlled and identified, which in turn create the limitations of the applicability of the study. These studies are usually more readily found in NIH. (A good example of a long term, excellent study is the Womens’ Health care Initiative.)

So this is my experience.
In this country, before around 1986, the Standard of Care for surgical management of Graves was a sub-total thyroidectomy. That is what I had.
The current thinking then was that if you leave a tiny bit of gland, it will produce a small amount of thyroid hormone, thus eliminating the need for additional thyroid medication. Contrary to some of the thoughts in these recent posts, my own experience and knowledge is that sooner or later, with
the factors of aging,plus other unknown factors, plus the tiny amount of thyroid gland left, just petered out, and sooner or later, most of us noticed we were too tired, and getting the symptoms of being hyPO. Which is exactly what was happening. So, for around 30 years, after my sub total, I was euthryoid, with no thyroid supplement. Then, with the hypo symptoms, plus some labs that were not really that dramatic, I began Synthroid, and became my old self again. I could not find much data documenting that a recurrence of hyPER happened after a subtotal thyroidectomy. The endocrinologists began to think it would make a lot more sense to remove the whole gland, thus regulating the amount of thyroid hormone would be less of a guessing game.
In the US, the Standard of Care now is to do a TT.

I imagine ANY growth in the neck area, thyroid gland included, left untreated and/or diagnosed, will put pressure on the esophagus and other surrounding structures, including the vascular system.
Shirley

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in reply to: Made decision for surgery #1178431

Hi Amy, I think you will feel much less anxiety and stress now that your decision is firm. There are some GREAT posts about what to expect before, during and after thyroidectomy.
Good job.
Shirley

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in reply to: Feeling awful…. #1178459

Hi Candi, long posts are JUST FINE! It is a long story, and darn complex.
I do have a few questions and some comments, with the usual caveat that we are just plain ole Graves’ and TED people in various stages of one or the other or both….
Comments-I am mostly hoping that they will help you form questions for endo. And I do suggest you see a neurologist and a cardiologist to get good baseline information in both these areas.
I am so sorry you have had such a rough ride with all of this.

It really does not matter much at this point, but correct information is always good to have. I think if you will check, you will find that Tapazole, which is the same as methimazole (which most posters call it on the forum) is completely unrelated to TED. Not sure what your TED symptoms were, but it seems that you might have had a mild case of scratchy and dry eyes, etc? But not full blown TED, you would definitely know that, and they really are different systems, though more people who have Graves’ get TED, than people who do not have Graves’.

I am wondering if you had labs during 2001 and 2006, and if your Tapazole dose stayed the same all the time?

In 2006, I do question if your sore throat was related to your fast heart rate, or, if it was because you were hyper. Would you review that with your doctor? Please review with your docs, or your paperwork, if some of your docs, related them to depression, visual changes, balance, etc. Or make a new appointment about this. Do you still have these issues? I really do question if those symptoms were related to beta blockers at all. Did you have a good workup from a good neurologist? Visual changes and balance problems really need to be evaluated by one.

I can understand why the endo is suggesting a thyroidectomy for you. Apparently your thyroid gland is enlarged, plus you have had one hell of a time with ATD’s (anti thyroid drugs, and they may not be the answer for you.) But again, your endo will probably want some more labs, try to figure out if you do have subclinical hyperthyroidism. Lots to think about.

I suggest that you consult with neurology, for you may have some incorrect assumptions about the relationship of a thyroidectomy and your neurological symptoms. If you still have balance and vision problem, it seems important to me that you have neuro involved.

You do have a long and complex history, and you don’t feel well, and I am super sorry! I guess I’d begin with your endo, and maybe formulate other questions from what I have said. It is entirely possible that I have misunderstood or missed something that you have already addressed in your post. I would definitely ask her if you do/don’t have subclinical HYPER, or if she/he can make that diagnosis at this time. Also ask her if you do have subclinical hyperthyroidism, how is it managed? I know it is a complex issue, and ask her if surgery is a treatment for that?
Lots and lots to think about to get you well!
Glad you found this site, I think you will find it very supportive and accountable and reliable.
Shirley

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in reply to: Thyroid Regeneration #1178358

That makes sense to me, Naisly.
Shirley

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in reply to: Milk #1178408

and I wait 1/2 hour after Synthroid at the very least, is usually is a bit more than that. I don’t think about milk at all, metabolizing the calcium supplements is a bit different, i think, than having milk or cereal, or a little cheese. But I don’t really know.Shirely

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in reply to: sleepy sleepy #1178400

Hi. Oh my. You sound so very hyPO! I remember that overwhelming need to sleep. Try to get your labs BEFORE you see the endo, that will be so helpful during your appointment. (The other condition that I had when I was falling asleep at stoplights, was a thing called pregnancy………no way could I keep my eyes open.)

What do YOU think? Maybe it will be as simple as decreasing or stopping your ATD, that is certainly a discussion for you to have with your endo.
I can certainly relate to the compelling need to sleep. Not fun, when it is this situation.
Shirley

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in reply to: Thyroid Regeneration #1178356

I don’t know. Interesting question. It is possible that the person developed thyroid nodules. Maybe it is possible. Let’s both try to find some reliable references to see what we can learn. I know mine has not, 5 decades later.
Shirley

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in reply to: Orbital Decompression surgery #1178395

Hi, if you look up my posts, I have written a lot about my experience with quite a few suggestions. Gatorgirly did too. The information I wrote then was blow by blow at the time, and probably more helpful than remembering back almost three years. One thing that i found very helpful. Elevate the head of your bed by piling a bunch of pillows, blankets, etc. UNDER the mattress, all the way across. Much more comfortable in my experience, and worth it cause it really helps by preventing any swelling. Glad i did it.
Shirley

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in reply to: Anyone else experience all this, or am i just a baby? #1177788

To Molly-
I think understand what you mean by benefit of RAI and surgery. I think what you mean is, what are the pros and cons of the two options? I think reading the experiences of the decision tree of people on this site, plus following some of the good suggestions by others, including my last post, will be most helpful to you.

Now, to pretty much say that I’d like to mildly respond and disagree with most of Harpy’s comments. My problem is that your posts infer “facts” rather that what you have decided to think. I’m in a feisty mood today. With the post you have just written, your disclaimer at the bottom of your post (which long ago, my comments prompted you to write in the first place) is well worth for any reader to review.

To Harpy
1. Not sure what you mean by” there is no benefit to RAI or surgery.”
THey are two of the three treatments for Graves, the other one being ATD’s.
RAI and surgery put us in a place so that we can be safe from the hell of being hyperthyroid, and possibly dying if untreated,with all the risks that accompany it.

2. Your second paragraph presents itself as factual, which it is not, and is not helpful. I don’t even know what you mean by your statement regarding antibodies being a simple hypothesis. Not sure “what you have seen over the years,” but your whole post this time not backed by any evidence-based research at all.

3. THe statement that you read beginning, “If your doc’s…” That is patently wrong to include on this forum. I am surprised it was not deleted by the facilitators. It is a huge disservice to say that. There is no logic at all with the statement. It addresses two different phases of treatment for Graves; of course the treatment WITH a thyroid, is exactly what you have been doing with your partner for the past 3-4 years, with the ATD, and it has taken you this period of time to “get it right.”
It does not belong on this forum. It is as valid as me saying that the sky is blue, cause I read it somewhere.
It is challenging to get the right dose of either ATD or thyroid hormone, and it does take some time and tweaking of dose to get to the “sweet spot” as it is frequently referred to in the forum. Hard to replicate our wonderful bodies, when our wonderful bodies run amuk.

4. Hypo paragraph. The inference that medical profession should have been able to perfect their practice because of the numbers of people who are hypo, seems pretty subjective to me. I guess you can say the same thing about diabetes, which is epidemic in this nation, plus cancer and cardiac treatments. Nice idea, and I am sure the medical profession would like to perfect their practice in all these areas.
Re hypo- It has been my experience, that, as we age, along with many other body performances and functions, some people become hypothyroid, with the symptoms that accompany it. Much more common in women than men. Although I don’t have the literature in front of me, I think that there is a defined age bracket in women when this might happen. That is because, by the labs and symptoms, the body is not producing enough thyroid hormone for an individual. Then, a thyroid hormone is prescribed, and when the optimal amount is reached, people do feel better. But it does have to be tweaked and monitored, because our bodies and constantly aging and changing. It is discouraging to feel hypo, and I am sure that there are discussion groups about this. There are always other factors to contribute to not feeling well.

Your last paragraph also relates to insulin, cardiac meds, and ATD’s, to mention a few. Obviously, traveling, trekking are easily resolved by having more medications that you need for a defined period of time. If there is a national disaster, and all transportation and functioning comes to a halt, all people who are dependent on a medication for good health or a safe life, are in trouble. Insulin dependence being one of the biggies. But I don’t think it is fair to present it as a con to deciding between RAI or surgery for Graves’. It is also a big con to go untreated, and an equal con to be dependent on ATD’s.
Shirley

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in reply to: TED again? Double vision again? Not sure I can do this again #1178181

Hello all,
Thank you so much for your thoughts and your caring, supportive comments. It means so much. Other people really do not understand at all.

Yesterday I went to the office of the doc who originally did the strabismus surgery. The orthoptist examined me, suggested I add more prism to my glasses, and since the double vision is transient, to try the Frenell prism first, to see if it makes any difference. Because I experience it only at reading distance, not far vision, she suggested that I have two pairs of glasses, one for near and computer-distance, and another for only far. I hate to do that, and go back to changing my very expensive glasses all the time. I’ll take it a step at a time.

I am beginning to realize that this not affecting my life very much right now, and I do notice that with the added prism, I don’t have the double vision.
So I am a bit happier now.

To Sasha-
Re stress-In my experience, I have not found that stress has been a factor in Graves’ or TED-with the major exception that my experience with both of them have been very stressful. But I am sure that external stresses were not a factor. Having said that, I think there is enough literature out there documenting that stress is tough on a body, and can impact us big time, it is possible that stress IS a factor in some way.
I’d guess that there are a large number of people in this country, in war torn countries, who have extreme stress, and probably most of them do not have Graves’ or TED. Having said that, it does seem reasonable that it may impact Graves’ and TED. Just to repeat myself, I found TED the most stressful experience I have had in my life.
It is an interesting topic to consider.
Shirley

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in reply to: I will be helping this weekend while Kimberly attends a meeting. #1178316

YAY!!! I hope to attend the conference you are attending this fall! Thanks for pitching in!
Shirley

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in reply to: Graves solution for pregnancy? #1178303

Hi, it just happens that I wrote a rather lengthy post this morning which touches on quite a lot of your concerns. It is the one right above your initial post, I think the title is “how not to obsess about GD and tEd”
It especially addresses your interest in getting pregnant asap. There is a lot more time to wait after RAI for trying to conceive than after a thyroidectomy.
Of course, there is a little time to get the right hormone replacement dose, but after that, you are good to go.

I think your endo had good thinking,and it pretty much reflects what I just said.

Not sure what county you’ll be in, but you definitely should find a good OB doc, maybe a high risk one, with your history, and have good communication between you endo and that doc. You will need thyroid labs while you are pregnant.

So- mine is just a beginning of the responses you will receive.
I suggest you ask the US endo, for names of the above named docs in the country where you’ll be. he/she may or may not be able to help you with this.
If you don’t mind saying where you are, there might be someone on this forum who is already there.
Shirley

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in reply to: New Endo…Maybe not #1178290

Holy moly. That is very weird. I tend to agree with you, that he is not the guy for you. Of course you have a right to a 2nd opinion. Can your primary refer to another endo?
I’m not sure what you should do. Maybe if you ask your present endo that you would like to have the lab you want, just because you do, he will order it.
Seems like a relatively simple request, but I realize if he does not think it is needed, that is a whole different ball of wax.
Shirley

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in reply to: how to not obsess about GD and TED – any advice? #1178256

There are some good suggestions in all of the posts. For me, it is gratifying to “meet” someone else for whom yoga just doesn’t DO IT! I wish I liked yoga. But not for this girl! (:

It is addressed again in #2, but stress enters my life when I am indecisive about something. I make lists, pros and cons, including my own feelings, which don’t have a right or wrong, plus the “facts” as I know them.
What I mean by “feelings, my opinions or my personality,” is that they are not a right or a wrong for the most part. For example, if I had a fear of radiation, and had other choices, I would chose one of the other two. If I had a fear of surgery, and had other choices, I would chose one of the other choices. And, surprise, surprise, if I had a fear of ATD’s, and the risks associated with that, I would, again, choose one of the other two.

For me, indecision is one of the biggest stress triggers for me. Once I make a decision, the biggest feeling is relief. This applies to a job I hated, and should have quit long before I did, a marriage, same situation, belonging to a book club that I did not enjoy anymore, but stuck with it too long.

I found the following helpful for me:
1. I do not read any of the other websites. This one seems so superior, and so many of the other ones seem too anecdotal, irrational and sensational for me. I realize there are probably exceptions. I took a look at a couple, to know that they seems too sensational and inaccurate for me.

2. I tend to hate indecision and limbo, and want to “take action,” and move on. That is my personality.
Therefore, when I first got Graves’, I guess it was an advantage for me to want to “get it over with” as fast as possible. So I am a ***list maker, and my own biases do contribute to how I made my list. I love lists, and to check things off.

My overal goal was to get this behind me as soon as possible.
As you read my list, I do not infer in any way, that one treatment is better than the other. Other people make different choices, for different reasons, and they are fine for them.

1. I absolutely did not want the uncertain future of recurrence that could happen with ATD’s. The idea of a recurrence loomed as a specter I did not want to deal with. I felt like I would be waiting for the Graves’ bomb to recur. I was mildly concerned about liver involvement, but that is a consideration generally, at the very beginning of taking ATD’s, and it is rare.
I was happy to take my ATD to get off the crazy Graves’ train.

2. Although it was not as common as it is now, to do RAI, I did not want the length of time it took to get to a euthyroid place, and it did not fit my “need” to get this behind me as soon as possible. I wanted to get pregnant again soon, and did not want to wait as long as was advised. Also, I did not want to find that they did not do “enough” RAI, and I might need a repeat dose.

IF I were considering my choice now, I would include the recent research that includes a mild relationship between RAI and TED. Briefly, if a person has TED, there is a slight indication that RAI might increase the TED symptoms. Having said that, this requires careful exploration with a good doc who knows this, for it is thought that this can be managed by giving steroids.
RAI is one of three choices.

3. For me, surgery was my choice, with no ambivalence at all. It seemed the fastest to get all of this behind me. I found a surgeon who did many thyroidectomies. I am comfortable with hospitals, and with surgery. I talked to people who had the same thing, and saw they were doing fine.
For me, it was ACTION, and I felt so at peace about it.

So, it might help you to make a list, too. REalize, that I was a complete cynic about believing in a permanent remission. I felt like I’d be dealing with a time bomb for the rest of my life. That does not make me right, or make it a poor choice. that is all part of incorporating our own thoughts in our choice when the three choices are equal.
Shirley

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