[snelsen]

in reply to: Suggestions for burning/dry mouth #1180071

Gosh, msled,
I am SO SORRY about this! My thought is that you need a second opinion. My experience with all endos, has been that with any dose change, increase or decrease, the MINIMAL,and not optimal or desired at all, time to evaluate you AND the labs, should be about 2 month. And with any dose change, I watch myself carefully, report how I am feeling, if it is worse, and we do not do labs for 3 months.

With the recent attempt to decrease my synthoid dose, we waited SIX months. So it is disturbing and worrying to me ( as “just” another Graves’ patient) that you have had so many changes in such a short period of time.

And your doc should be concerned, and take a really careful history of your symptoms. Seems like you need to be “seen,” with careful attention to how you are feeling. You are not feeling well!

Does the endo pay attention to the T3 and T4? I imagine Kimberly will chime in soon. Generally, docs are paying attention to all the labs, not just TSH

Thinking back, I do remember mild dry mouth when I was hyper. But not sore gums, and it seems that your dry mouth is a game changer. Just to be sure, are you drinking enough fluids??

I am sooo sorry. You sound miserable. I hope you hear from others with their experiences and suggestions.
Shirley

[snelsen]

in reply to: Orbital decompression surgery and headaches #1179766

Wow. Trigeminal neuralgia is VERY painful. As you know. I’m really sorry,
Karen. At least you know what it is. Sure hope it recedes and gets out of your life.
I don’t have a recliner, but sure have been thinking about it. Should have gotten one YEARS ago.
Shirley

[snelsen]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179635

bigad, i have been taking synthroid for many years. I feel fine, but my labs always say i am hyped. I think for a period of about 10 years, I was taking too much Synthroid/150mcg. I went to several endos before I found the right one.
We slowly decreased my Synthroid to 77mcg, but that did NOT work, threw me in to sloth/hyPO stage, plus gastro paresis. Bumped it up slowly to 125mcg, and now have decreased to 112mcg. Labs never change, no matter what I am on. TSH always suppressed. Sometimes T3 T4 ok, most of time a little high.

So, for me hard, to define remission. But generally, I tend to think of remission as taking no meds at all, not having TT or RAI.

Gabe-the most frustrating and discouraging thing about TED, is that there is no test, no measurement, at all that says you have reached the inactive phase.
The only real guideline is that your eyes are not changing every day, and more significantly, they are stable and not getting worse.

The double vision bothered me the MOST Life changing not in a good way.

Makes sense to deal with your thyroid and the “thing” under your clavicle first.
I’m sure you will want to begin slugging through TED. I had to have an OD in the active phase because the enlarged, fibrosed eye muscles were putting pressure on my optic nerve. There are tests of colors, and the Humphrey visual fields test (machine) to be sure your optic nerves are ok. They also look at them, but cannot always tell about the pressure without additional testing.
Shirley

[snelsen]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179632

Hi Karen, if you have a good ophthalmologist, stick with that doc. But do have a discussion about TED. I do not recall. Have you been told you have TED, or did this come up very recently?

No, my double vision did not go away. It got worse. Most people do NOT have TED to the extreme degree that I had it. Most are moderate or mild. Not severe like me.

Yes, sometimes double vision (diplopia) leads to more surgery. In my case, I was counting the days until I could HAVE the strabismus surgery.
Briefly, TED has a couple of phases
1. Acute, or hot phase. when eyes are changing a lot, sometimes better, sometimes worse,
2. Quiet, or cold phase. Pretty much all damage and symptoms that occur are “done” so the measurements for any surgical procedures will be stable and and can be counted on by the surgeon.

I was going to three eye docs. A “regular one” who referred me to the neuro ophthalmologist, and they know ALL about TED, and the neuro/op doc referred me to a pediatric surgeon, for they are the one who do the strabismus surgery. This doc tried several prisms, which help some people a lot for the double vision, by bending the light. The temporary ones did not help me a lot, but now I do have prisms ground in both lens’s of my glasses, and they do help a lot. I also had strabismus surgery.
TED is a slow drag. I’d pursue the eye appts at your leisure, after you are a bit farther away from your thyroid surgery. Having said that, I know exactly what you mean, by the double vision interferes with work. If you shut either eye, you will not have double vision. Some people, in the interim of TED, use a patch on one eye when they work and read.
Be good for you to gather more information. There are some good TED references on the site.
Shirley

[snelsen]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179630

Hi Sue and Karen
Gabe-glad you labs are soon. Hope you can retrieve the results soon, as well.
Seems you have two issues going on, and you have addressed both of them. I imagine he will increase your thyroid dose, too.

Regarding your eyes, it is a very use idea to find an ophthalmologist who is very familiar with TED. I suggest a neuro-ophthalmologist. I can relate 100% to work and double vision. That is when I had to stop working. All the numbers on the computers and monitors were jumbled, and I could read them.

Sue, I suggest you explore FLMA-much easier to get. To define them, and the subtle differences, is too complex for this venue, and it is also very dependent on the employer, the % you work, how long you have been there, and a lot of other stuff. As a global statement, FLMA protects your position.
Generally, with any situation like this, the only resource for accurate information is the HR department where you work. You usually have to exhaust all sick leave days, and in some places all vacation days, before FLMA kicks in.

I think you are already thinking in the right direction in regard to your own situation. Just gather information about which term to use.
I stayed out from TT two weeks, no complications but going back full time the third week to a very busy job, where I was on my feet every minute, working hard (as an RN on a med/surg floor) was a BIG mistake. I was exhausted beyond any exhaustion I had ever felt. I think your plan of 2-3 weeks, more toward 3, and going back 1/2 time is perfect!

Let us know how it all goes.

Shirley

[snelsen]

in reply to: Tapazole allergy #1180058

RBC, I agree. 2nd opinion, or at least slow down, see your present endo. That is a big decision to make on the phone after one month. And you can suggest switching to MMI (methimazole) the other ATD (anti thyroid drug.) Maybe discuss stopping the drug for 3-4 days, see if rash resolves.
It seems very impulsive to want to schedule for an RAI next week. YOu do have time to consider options. Sounds like you prefer to go with ATD’s if you possibly can. Say so.
Which numbers got worse? Thyroid labs or liver labs? Did you endo order some liver function studies?
Shirley

[snelsen]

in reply to: Eyelid surgery scheduled #1180044

Gatorgirly!
Yay! Seattle was MY dream. And I am here! We both have marvelous cities, with water, sunsets, mountains, and good fish. Although I would LOVE to have a lobster, and they don’t hang out here. But everything else does!
Shirley

[snelsen]

in reply to: Eyelid surgery scheduled #1180041

Hi gatorgirly, so nice to hear from you!

I echo holly’s experience. I did not have a general, was awake the entire time. Just had locals. Minimal bruising, Sutures in eyelids for about 10 days. Super piece of cake. And I have had lower eyelid procedure done twice. I did not have much bruising at all. Exactly the same as holly, I resumed normal life except for bending and putting lots of strain on eyes. Eyelid surgery is NOTHING like an OD. OD big deal, eyelid surgery, I barely noticed. Felt fine.

I always wear dark glass, for photophobia is my baseline forever, unfortunately.
You will do fine.

Congratulations on new job. Will you move to Boston area at some time, or commute?

You will feel fine by Saturday, if your experience is similar to mine.
Shirley

[snelsen]

in reply to: Acronyms #1180033

I forgot…

OD -orbital decompression

[snelsen]

in reply to: Acronyms #1180032

Hi! Reasonable question, that is for sure.
Here’s a good start.

TT- total thyroidectomy
MMI- methimazole
RAI radioactive iodine
ATD antithyroid drug

That is all I can think of right now!!!

Hope this is a good beginning! THis website is the best. ANd the most accurate and reliable. YOu will meet a lot of new friends here.

Shirley

[snelsen]

in reply to: My 4 year old son just diagnosed with Grave’s Disease #1179985

Ricata-You have done a marvelous advocating for your son. I am glad you have had good health care providers for him. I think you will find that he will recover very rapidly from his TT. Probably have less energy than he usually has. Sounds like you have great health care providers for him, and all the communication is up between you, the endo and the surgeon. Marvelous

It is wonderful for you to continue to stay on the site, for when parents write with a child with Graves’, they feel so alone. I hope you stay so you can help others, as well as receiving support from other parents in the the same situation as you with their child. It is hard to find other parents in the same situation. The support is so great for you and others.

Please understand I am writing the following, hoping that the people who read your reference for the Shomom book, will proceed to read the following two posts by Kimberly and myself. I concur with Kimberly’s thoughts and remarks about the book and author you referenced. Her book about nutrition and managing thyroid disease, is downright scary. Her advertising experience works well for her when she writes her very readable books.

Shomon’s disclaimer is very telling. I’m guessing it is the result of a lawsuit, and/or she is being careful to protect herself. Here is her education.
Tells A LOT about her. Here is her education. In a nutshell, she has a finance degree she never used, but has an extensive background in advertising and commercial advertising ventures. And she has Hashimoto’s thyroiditis.

Here is her education. Summary, a B.A in finance. That’s it.

“Shomon is a 1983 graduate of Georgetown University in Washington, DC, where she earned a Bachelor’s degree in International Finance from the Edmund A. Walsh School of Foreign Service. She worked in advertising and marketing for a number of advertising agencies and grassroots outreach companies, developing advertising and outreach campaigns for commercial and non-profit clients. Shomon was diagnosed with Hashimoto’s thyroiditis, an auto-immune thyroid condition, in 1995, and this became the impetus for her involvement with online thyroid support groups, and ultimately, the creation of her thyroid-related web sites and her work as a patient advocate. In 1997, she joined with the Mining Co., (now, About.com) to create the Thyroid Disease web site, and her site went live when the company was launched in April 1997. She continues as Thyroid Guide for About.com as of February 2007. Recently in June 2008, she led a workshop called Living With Thyroid Disease: Creating Your Wellness Plan at the New York Open Center [1]. She also writes, edits and maintains a number of other thyroid and health-related web sites.”

And the following is copied and pasted verbatim from her website.
It is in very light print that is difficult to read, at the very bottom of her website, where will see it or read it.

“Sticking Out Our Necks and the contents of this website are © Copyright Mary Shomon, 1997-2011. All rights reserved.
Mary Shomon, Editor/Webmaster, P.O. Box 565, Kensington, MD 20895-0565.

All information is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions.
You should seek prompt medical care for any specific health issues and consult your physician or health practitioner before starting or changing any aspect of your medical treatment, diet or fitness regimen.
Please see our full disclaimer.”

Shirley

[snelsen]

in reply to: Swollen Lymph Nodes in Neck #1180028

Agree with Stymie. Sometimes, nodes in neck are enlarged cause we have a cold, flu, sore throat, etc. Good to have someone check you out. But not an emergency.
Shirley

[snelsen]

in reply to: TT complete #1180015

Hi Talley,
that is great that you got your path report before the weekend! You are in a much better place than when you wrote last weekend! Really good news that the tumor was benign. Sometime, when you get the path report, or when you see your doc, I’d be interested in knowing what it is called.
Yes! TT all done. Tiny cancer in thyroid all gone. Thyroid all gone! Bump/lump behind clavicle all gone! WHAT A WEEK.

Sorry you are having discomfort at the site of the tumor. But maybe it will slow you down a little bit (: Stay humble about activity, you had a LONG surgery, and it does make a difference in you endurance post op.

This is a once-in-a-lifetime event. Get well, soon you will feel like doing things, but do the things you never have time to do, plus having lunch with a friend, go to a movie, generally regard this as a planned vacation.

Glad the drain is out. I hope you did not feel it was a big deal. Sounds like you had a MARVELOUS surgeon.
Shirley

[snelsen]

in reply to: TT complete #1180007

Wow! You are doing beautifully~ Thank you for writing! Yay! Hospitals are not designed for sleeping, unfortunately! You will be SO glad to get home.
Did they as you to remove the drain yourself in a few days? Or is it a post op trip back to the doctor?
Glad the thyroid and the growth are now gone. You re on your way to recovery.
Yes, the bloodworm will be interesting. I am thinking you mean you are still on the Tapazole because of labs indicating that you were/are very hyper. souds like you are in good hands. And there is good communication between the endo and surgeon. THat is what you want!
Congratulations on moving over to the “other side.”
When you are discharged today, tell them you want the path report as soon as possible.
Shirley

[snelsen]

in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179625

Don’t worry about the drain. In your situation, it is a good decision, not a bad one. It is a tiny,soft rubber tubing, so if there is extra oozing after the surgery, it goes to the outside, rather than building up in you. Best wishes for today.
Shirley

[Author]

Posts