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in reply to: Worried… #1171698

There are some good posts about the thyroidectomy experience. It was my choice, the recovery was smooth, and I return to my normal state of health quite rapidly. Kimberly gave some nice references to you. The most significant thing is to have a surgeon who does this procedure on a routine basis, at least 50/year. I imagine your endocrinologist will guide you in that direction.
lch11 or lhc11, I can never remember which, described her experience nicely.
I think I recounted my experience, too, basically saying that my neck and throat were a little tender for a few days, and basically no pain that a tylenol or ibuprofen (later) would not help. BEst to not begin by eating food that needs a lot of chewing, cause you are sore. This partially because of the surgery, and partially because of having our neck extended in a backward position. The kind of sore that you have if you go running, and have not run for a while, lifted weights, etc.
The drops you take before the surgery (potassium iodide) taste terrible. I cut it with cranberry juice and orange juice.
shirley

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in reply to: Sent home from work… #1171793

Yes Yes Yes Yes!! Your description is accurate and right on!!!
Shirley

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in reply to: Graves and pre-op – what a mess! #1171753

1. Yes,I’d like to clarify the two drugs I mentioned. I did make a typo.

The anti-nausea drug is Zofran, or Ondansedron. In hospital lingo, it is to prevent PONV (post op nausea and vomiting) In my experience, most anesthesiologists giver it intra-op (during the operation) and many give a dose in the pre-op area. In the preop area, it is given primarily IV, but by mouth is sometimes done. In the OR area, it is given IV.
For intractable nausea at home, this drug comes in a soluble under the tongue form, which is really helpful when you can’t swallow a pill, anyway. this drug used be VERY VERY expensive, pretty much used for chemo nausea, but now it is “off patent” from Glaxo Smith, so cost is much more reasonable.

Midazolam is Versed. That is the one I jokingly call a “forgetting medicine.” It is a short term amnesic, used during colonoscopies. In the preop area, when patients are scared and apprehensive (or when I, who has been a patient many times in this situation) Versed is a great drug to have IV to relax, feel calm before you to to the OR. This is given IV preop. Hope this clarifies.

Most of what I am saying is my own experience as a patient, but also because I am an RN, and have advocated to the docs (usually anesthesia to begin with, ) to get an order for these two drugs if I don’t have orders.
Zofran does not make you groggy or sleepy, in my experience.
Shirley

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in reply to: Graves and pre-op – what a mess! #1171747

Zofran won’t knock you out at all.

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in reply to: Graves and pre-op – what a mess! #1171746

Here’s a suggestion. In the pre-op area, ask to be medicated pre-op and intra-op with ondanseton (Zofran) and/or ask the anesthesiologist if she/he what meds you are getting. The anesthesiologists are pretty much the boss of your experience from arrival to discharge in that area. I also suggest that you tell her you are feeling anxious and scared (cause you are normal! everyone feels that way.) The drug for that, which she may give, is midazolam (brand name Zofran.)
Most anesthesiologists will do that anyway. Tell her/him you don’t want to remember anything. This is a marvelous hypnotic/relaxing/forgetting/amnesic drug. It is always given when people have colonoscopies. That is why people dont remember anything about them!!! A darn good thing.
And, I suggest you tell anyone who will listen to you that you’d like to have an anti-nausea med for home if you need it. zofran now comes a soluble, under the tongue form, which is very nice if you are really puking. AND you may not be nauseated at all. REally. Anesthesia is a lot better now. But also is related to the length of the surgery. And remember that pain pills, opoids, tell the bowel to go
on strike and take a nap. So I suggest taking stool softeners propylactically to prevent constipation.
Just my two cents, but this might help you a lot.
Shirley

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in reply to: Strange or Unexpected Orbital Decompression Side Effects #1171417

I wonder how much constipation is really an issue. I say that because this is a relatively short procedure, generally around an hour, in my experiences. Agree with the comments about pain meds. All opoids (narcotics) have a tendency to tell the lower bowel to go to sleep. To go a step further, the post op course after surgery regarding discomfort, having your head of the bed elevated, and using cold packs is the most important thing to do. The pain is related to the swelling, and if you keep your head up, the swelling and bruising are minimal. I think I had some Percocet, maybe took one to see what it was like.
Many of the other symptoms listed, are related to one of the cranial nerves which does control sensitivity in the mouth, teeth, tongue, hot/cold beverages, etc.
Sometimes it is pushed around, or moved a bit during surgery. In my own experience, I did not have any of that happen. But I know it can happen, and in most instances, it is temporary.
I think all surgeons will say (among all the other things) that double vision is a possibility. That did not happen to me. However, I had double vision before the OD. The really good thing about double vision as a complication, if it occurs, is that the magic strabismus surgery can correct it, and it is a super easy procedure for the patient, with instant gratification with mono vision again. I speak from experience on that one!

I read the reference Kimberly provided, and it is really good. A great reference to develop questions to ask the surgeon, too.

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in reply to: Confused, Frustrated and Scared #1171786

Gosh, I sure am sorry that you feel this lousy. No apologies ever needed for the length of your post. As you said, the list of symptoms represent hyPO and hyPER symptoms. And, as you also said, your labs are within normal range. Just as an additional comment, all labs differ with their range, and they not listed in your post. But as you also stated, the endo has told you, and you know they are in a normal range. In your situation, it would be really hard for an endo to resume thyroid supplement, given your labs.

But the person and your symptoms count, too. And unfortunately, many of them, without changing thyroid labs, can represent many things. So this IS a big deal for you, for you don’t feel well. **I think it super good that you have the baseline labs.
I suggest that you ask your primary care doc,t he one who referred you, to repeat the labs in one month to see if there is a trend. If all your symptoms get worse, try to differentiate them in hyper and hypo. Take your pulse and record it.
I guess, in your situation, I’d make a plan for further action, and think about everything listed below. You sound very well informed about “our” disease called Graves’.
1. Begin to consider that all of this may not be thyroid related, so if you have not had a good physical, that is probably a good idea. I say this, for I would not want some other diagnosis to be missed, simply in your best interest in wanting to feel well again, get back to being you again.
2. Think about other stuff going on in your life.
3. You may know this, but an elevated cholesterol can be associated with being hyPO. Having said that, so does diet, exercise and weight.
4. I suggest you make an appointment with another end. Will your GP be willing to make the referral, if you need to have one. If you can do this, I would make it AFTER you have your second set of labs. It usually takes that long to get an appointment with an endo,anyway.
5. Although the endo did a good job with tests and labs, it seems he falls down in the area of looking at you as a person who has distressing symptoms, many of which do represent hypo/hyper Graves’. If you feel he has been dismissive, and it does seem that you are not interested in going back to him, I really encourage you to find another endo or have your GP work along with you to gather information.

As Bobbi said, many symptoms on your list sound hyPO, and you do know from your own experience with hypo, that you felt bette when you began your Synthroid. But it could be something else, as Bobbi suggested. So you are in the position of seeing a good doc who will evaluate you, do a differential diagnosis of what to rule in, to rule out, and to consider, the reason you feel so crappy all of a sudden.
It is my impression, as a layperson and a Graves’ patient, that you do sound hypo. If your heart rate is normal, rather than rapid, your BP is fine, that speaks for hypo also. But my whole message is that you need a compassionate doctor
who will work with you to get you healthy again.
Shirley

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in reply to: In need of support #1171735

trying again.
http://thyroid.about.com/od/breastfeeding/f/thyroidscan.htm

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in reply to: In need of support #1171734

Hello again, here is the reference. I hope this is it. Will check.
http://hps.org/publicinformation/ate/q4166.html

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in reply to: In need of support #1171733

Hi, I read about that also, but it was only three days with another referenced I ???
I’ll try to dig it up again and send it to you here. I am hopeful that you will be able to continue breast feeding. I GET it.
Shirley

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in reply to: 38 and pregnant one year after RAI #1171779

Hi DHood,
What a lovely letter! Your experience will be so helpful and reassuring to the people on this forum!!
I am so happy for you and your husband about your pregnancy! Your letter is very relevant to some of the current posters, and all the others who will use the search engines on this subject.
Shirley

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in reply to: Teenager/Graves Disease/Orbital Decompression #1170574

Hi alsha, this post may be be redundant, for we have exchanged posts previously.
I am not considering OD on the other eye-approximately 23-24 proptosis, I think this is a pretty subjective measurement in some ways, for i can feel by where the place the things at the corners of both orbits, they are in different places, either deeper or more superficial. But, aside from that, I think my elective OD will help my cornea,for there will be less protrusion. Since my eyelids are retracted, also, my eyes do not close completely when I sleep. If I decrease the proptosis by OD, I think it would be helpful.
Cosmetically, I have given up on looking like I used to look. Which, in hindsite, was pretty darn good. I simply look different now, with the use of sun glasses most of the time, and dabbing my eyes when the tear and overflow a lot.

To the mom of the teenager. It sounds like your daughter has pretty severe TED. I think you are right to be concerned about having RAI with TED. I just had an appt with my endo today, and he had a joint meeting with ophthalmologists, and neuro/op docs, and the evidence is growing relating to RAI exacerbating TED. Even with the prednisone before. But this has just come to the attention of docs, and there is not good body of literature yet. Most is anecdotal, as I just described.
Re surgery,it is important that she feel comfortable with it. It was my choice, and I don’t regret it at all. I think you will hear from facilitators on this site have been on much longer ATD regimen than two years. But yes, this is another area where the literature is not there to support decades of use.

As I previously said, I was extremely happy with my choice of thyroidectomy. It seemed the quickest to permanently get my life back, as fast as possible.
Shirley

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in reply to: How Much Does Eye Dryness Improve? #1171777

Hi Kells, gosh, sometimes I forget the obvious! Guess I figured you were using non-preservative eye drops already! My favorite is Bausch and Lombes, Smooth. My eyes are dry, and since I am in the (at least) third year of Graves’ I don’t expect that to improve very much. I always carry them with me. And always looking for them on sale, which is rare. I think I have also gotten Genteel in the past. I also use lubricant at night.
Shirley

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in reply to: thyroid storm?? #1171767

I guess I should ask you if are you are feeling much better now. ARe you drinking fluids? Include that in your history, too.

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in reply to: thyroid storm?? #1171766

Go to the ER, be sure to give your Graves’ history first. The first intake person many not know about Graves’ at all. Emphasize that you need to be seen very soon, by saying that you need to be seen to rule out a medical emergency which is called thyroid storm. Tell them to call your endo, even if he does not have privileges at the hospital, he is your doctor. This may help.If they show no understanding at all, call your endo from the ER.If you have someone with you, have them repeat this information to anyone they can find. ER’s are super busy, overcrowded, with very sick people, trauma, and folks who are not very sick but use the ER as a visit for a sore throat, cause they don’t have insurance, and people seeking drugs. You come in the first category,until proven otherwise.
Shirley

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