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in reply to: Eyelid retraction correction surgery #1182608

Shakira,
Read back through your posts, see HOW FAR YOU HAVE COME!! I am so happy for you, and it makes me smile to think how much you will be able to help others, reassure them, re job, surgery, HR, stress, and all the things that were so very worrisome to you. And rightly so! Now, you are on the other side of all of his. PLUS a NEW JOB. I am so very happy for you. New jobs come with a bit of stress and self-doubt as well, and I am sue you will do fine!

I really like work, I am not retired. But I actually miss it a lot! Fortunately, I still get invited to all the parties, and get all caught up on the rumors, drama and all which are a part of work.

The eyelid procedure really IS a piece of cake, with very little impact or issue, and great rewards. But you just don’t know…until you know!

Again, my best wishes an congratulations. Please stay on the forum!
Shirley

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in reply to: 3 year old with graves #1177602

I’ve worked in hospitals for years and years. The main things that need to happen if she has a TT, total thyroidectomy, is she should be at a Children’s Hospital, with a pediatric surgeon, and an anesthesiologist who is skilled and experienced giving kids anesthesia. By being at a Chidren’s hospital, you can count on all care givers and docs, nurses and other health care folks, having experience and training with kids, AND they want to, and chose to work with kids. Many kids, including 8 lb babies have a general anesthesia if surgical procedures are needed.

With all due respect to you endo, I heartily disagree with his comment about waiting until ages 8-10 for surgery. He is not a surgeon, he is not a pediatric ophthalmologist, or any kind of eye doc. “Waiting,” if your daughter has TED, thyroid eye disease, and does have optic nerve atrophy, will result in permanent blindness that cannot be reversed or fixed.

Can you get to a pediatric eye doc? well, I just re-read that she was seen by a thyroid eye disease specialist, I did not now there was such a thing. But good that this doc is familiar with TED. One question I have, is how about a CT scan, that usually shows the results needed, along with other vision tests designed for kids. Rather than an MRI? You can certainly ask the question. An MRI would be much more frightening, for it is long series of very loud noises. She most likely would need to be sedated for that, for sure.
If you can get to a peds eye doc, do it.
Do write again. I know my suggestions mean more research, more phone calls. But especially she needs a good eye exam to determine if she does have optic nerve atrophy. That can’ wait.
shirley

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in reply to: OD questions–confused #1182864

HI CHRISTY!
I’ll try to catch up to you tomorrow. JUST beginning to pack for an early flight to Iowa.
Shirley

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in reply to: newbie with a question ***Followup question*** #1182853

HI, NEWBIE!!
Well, that IS interesting!

From now on, in the future forever, I suggest getting copy of your labs,just so you can refer to them any time you want. Maybe you already do that.

In answer to your question, I have no idea of thyroid regrowth, but I sure have not heard of it ever. And I have been dealing with this whole Graves’ thing since 1959!

Perhaps it would be very helpful for you AND your doc, to get the original path report from your TT, as well as the operative report. It would tell you and your doc more information Perhaps he did leave a little piece, who the heck knows?]

I am very happy for you that you did not experience the hellish time most of us had with Graves!!!!

Last thought. How do you feel? Any different? Sometimes it’s hard to know.
Do write again.
Shirley

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in reply to: Is there always weight gain after TT? RAI? #1182704

Hi JEH<
Soooo…when we have Graves’ all of us begin with an ATD, anti thyroid drug, to decrease our crazy irrational thyroid production. Then we can actually THINK!
And, if heart is really racing, and/or BP really high, meds for that accompany the ATD> That is what an ATD is for. But it is not the permanent treatment for Graves. Now that I realize you are on an ATD, it makes perfect sense that you might need more…or less.

Soooo, though, one of the treatments IS ATD, the other two are radiation (your endo is so right that this is not for you, there is enough literature out there now that says it exacerbates TED, or can) So for you, your choice are ATD or sugary. Until recently, ATD was not considered a treatment. In recent years, a few people, Kimberly is one of them, has “stayed” on ATD’s with good luck, and that was her choice. But if”we” continue to revert to hyper again and again, it is time for a TT (total thyroidectomy,) which is why you endo mentioned it.

All tired tonight. Signing off!
Love hearing from you
Shirley

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in reply to: Does weight loss affect dosage? #1182832

Interesting! I could not find any study, reference, etc. that states or alludes to the fact that weight is a factor in the amount of thyroid hormone needed. This question came up once, and I asked my endo, he said no relation. That , of course hyper folks lose weight, cause they are so hyper, and everything about their metabolism is racing, and hypo folks are sluggish, with the hypo symptoms you are familiar with.

I am not questioning your endo, but this is strange to me. Especially because I have been told it is not a factor in thyroid hormone replacement.

Did you have RAI or thyroidectomy? If RAI sometimes it does need to be repeated, cause not enough radiation to destroy the gland.

I hope Kimberly checks in with her knowledge about this.

In answer to your question, yes, my TSH T3 and T4 vary, and combined with my symptoms, the thyroid hormone dose is changed.
Shirley

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in reply to: Is there always weight gain after TT? RAI? #1182701

Hi JEH, really enjoyed your post! And we are in the same demographic decade! But soon, next year, I will be in the next one~

Just one question for you, and I think it is terminology with all those darned abbreviations~ TT means total thyroidectomy, the surgery to remove your thyroid. Are you referring to ADT?? Which is antithyroid drug? Like methimazole? Or do you mean levothyroxine, which is Synthroid, Tirosint, a few of the brand names for thyroid replacement?
Just checking!
Shirley
I have to give away a lot of clothes, cause of bigger abdomen and larger waist, too, but not heavy or overweight. Don’t like that!

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in reply to: More TED trouble #1182805

Hi scanders!
Your workplace was a heck of a lot more accommodating than mine! And I was an RN working in an academic setting! I hope the new boss/management will work fine for you.

The strabismus doc saying that you have decreased motility is another way of saying that you have TED, and the muscles of your eyes are affected. Did ye indicate that?
They (muscles) get big and fat, don’t expand and contract like they used to do, and that is why you have trouble looking up. I could ONLY look down. Everything else was hell. I had one OD, orbital decompression, cause the enlarged muscles were pressing on my optic never. Have any of the docs suggested OD to you? If so, that should be done BEFORE the strabismus surgery. The OD is a much bigger deal, and has a much longer recovery period. Generally, they are done for the reason I hd, and/or for bulging eyes, thus having unprotected corneas, and eyelids that won’t close over them. I JUST had a consult at Harborview in Seattle this morning, trying to decide whether to have my other eye done, cause that eye won’t close, I have to tape it closed at night. But decide to continue doing this. If you read around the forum, you can find lots of descriptions of this experience.
Shirley

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in reply to: does thyroid med cause stomach and esophagus irritation? #1182726

30 minutes is not very long. Best to wait that long if you can do it. Then eat (not supplements) food. I take it first thing in the morning, with all my other meds, with a glass of water. Then fiddle around in the kitchen making coffee, checking my email. Time flies. Then eat. Maybe this will help you. Like Ski said, the deal to this is to be consistent, not with what you eat (in my experience) and, in my opinion, not even when you eat. What I mean, is that if you don’t eat for an hour, 2 hours.

I am aware that what I said is contradictory, but the point is that as long as you wait 12 hour to eat, they thyroid hormone will be pretty much metabolized.

I don’t have GERD, it is about the only thing I DON’T have from this darn disease. Gatorgirly (HI, gatorgirly!!!) had some good thoughts.

Again, the consistency is the main thing, so it is one of those comparing apples to apples things when you get your labs.
Shirley

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in reply to: Soy exhaustion #1182765

Almost all soy grown in this country is GMO. I am from SE Iowa (live in Seattle) All farmers in the area are growing GMO corn, soybeans for sure.
Except a couple small certified farms.

My question about eating soy, or anything else that seems to be impacting your life, is, “Why eat it?” How about not eating soy products? Just a thought.

Reference follows:
http://phys.org/news/2013-06-gmo-corn-soybeans-dominate.html

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in reply to: thyroid cancer diagnosis after TT #1182768

I am sorry the doctor did not take more time to explain all of this. Sooner or later, you will hear that thyroid cancer is one of the “best” cancers to have. Most of them are really slow growing, when found the treatment is a TT!!!
So she is ahead of all of this. More women than men have it, usually in their 40s and 50s.

But the best news is that after this shock, and perhaps some more reassurance for a nice doc who will take time to confirm what I have written (cause I am not a doc) you and she will find that it will be a non-issue in her future life, with no impact at all. Because it WAS FOUND!! Yay.

Your daughter may/may not have had a scan before her surgery. Practice varies. And even so, the nodules could have been so small.
Thyroid cancer Stage I is manageable, treatable, and I am sure she will be referred to the proper doc. I hope you find a compassionate doctor who takes more time. Basically, it is a GIFT that she had Graves’ and had the TT. The surgeon did the right thing, sent the thyroid to pathology, and this was discovered, small and early. TT is the treatment for Stage I and II thyroid cancer. Sometimes with a little dose of radioactive iodine, mostly not.

This is from the Cleveland Clinic:
How is thyroid cancer treated?
You may hear your surgeon talk about the ‘stage’ of thyroid cancer. This is a classification system that determines the size of the tumor, if it has spread within the thyroid gland, or how much the cancer has spread to other areas of the body. The lower the stage (the stages are 0 through IV), the less the cancer has spread. Treatment plans are developed based on the stage and the type of cancer.

Stage I and II papillary and follicular thyroid cancer
Treatment options include:

Surgery to remove the entire thyroid (total thyroidectomy), followed by hormone therapy and, in most cases, radioactive iodine
Surgery to remove one lobe of the thyroid (lobectomy), followed by hormone therapy. This option is used only when the tumor is very small (less than 10 mm — which is less than one-third of an inch) stage I cancers.

Your daughter will be fine!!!!! This was an incidental finding and a very fortunate one. As well as a big shock the way it was presented. You needed more education to accompany the bomb he dropped on you unexpectedly.
shirley

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in reply to: Would you believe: Shingles! #1182740

Hi, PLEASE ask on of your caregivers their thoughts on taking acyclovir for shingles. Maybe you have had it long enough that it mayday not be helpful for you now. That is THE medication for shingles. It’s in varicella zoster family. a member of the herpes family. like chicken pox and cold sores.

And I suggest you consider getting the shingles vaccine. Depends on your age, though. Or at least have a discussion about it. Shingles can be terrible.

I totally agree with you about where to “stick” the Amitriptyline!

I like the following website. the one Kimberly mentioned is also very good.
http://www.cdc.gov/shingles/about/prevention-treatment.html

Shingles is not contagious, with one exception, but if a person has never had chicken pox, they are vulnerable to the virus. You can read about this on Kimberly’s website. AND your caregivers should know this stuff! (:
Shirley

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in reply to: does armour activate Grave’s antibodies? #1182731

Would you consider using Cytomel, which Kimberly mentioned? My endo said fi I wanted to do this correctly, because of half life of Cytomel. it need to be taken at least two times, and optimally three times a day.

Whatever you decided, be sure to be patient and wait 2,3 months to have an idea of the change has helped you at all. Or not.
Shirley

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in reply to: does armour activate Grave’s antibodies? #1182730

Would you consider using Cytomel, which Kimberly mentioned? My endo said fi I wanted to do this correctly, because of half life of Cytomel. it need to be taken at least two times, and optimally three times a day.

Whatever you decided, be sure to be patient and wait 2,3 months to have an idea of the change has helped you at all. Or not.
Shirley

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in reply to: Coping with Graves #1182679

Hi Rene,
Of COURSE you want to feel good and get on with things.

Your symptoms of fatigue, sluggish, no appetite,) (which reminds me of hyPO,
but your weight loss reminds me of hypER. Your sure are bouncing all over the place with conflicting symptoms,a nd you feel crappy and hate it.
Then, when you feel good, it is easy to psychologically believe that you are done with Graves’. But intellectually, you deep down may know that you aren’t, as proven by how you feel, and your own experiences. I really am sorry.
All of this is very discouraging, ESPECIALLY COMBINED with the nightmare experiences, times many, that you had reaching a diagnosis. Plus the lack of understanding from your husband and daughter.

I am glad you have seriously considered a thyroidectomy. The first good news is that it is not at all typical to take six months to adjust the sythroid dose. One of the best things about it, is that the thyroid is GONE, thus aside for a possible amout of circulating hormone, which is gone in days, you are good to go for taking your thyroid hormone. Then it takes about six weeks, plus combined with your symptoms, but really six weeks is the amount of time to wait until labs. This COULD vary, according to your endo and surgeon. Possible they might want a lab earlier. But I have not heard of anyone who had the experience of messing around for 6 months to get to that “sweet spot.”
Perhaps it is time to consult with a surgeon, after you carefully look around for the right one. Your endo may know Generally, a major medical center is where you want to be, where everyone is familiar with the surgery There are some wonderful posts on the path people took to get to that decision, and accurate descriptions of each day and step along the way.
I will send a PM to you. I ‘d be HAPPY to talk or write to your husband and daughter, and I am sure others would, too

THIS WILL BE BETTER. YOU WILL BE BACK TO BASELINE. AND GRAVES’ IS TERRIBLE, I WOULD NOT WISH IT ON ANYONE. But really, you will end up being yourself, feeling good, and running 1/2 marathons!!

Shirley

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