[snelsen]

in reply to: Hi all, back in touch #1182189

Hi Deb,
If, at any time you can tell that your eyes are drifting open at night (the mask did not work at all for me) the tape I use is Mepitac. IT is wonderful, and keeps my eye closed (I could do both of them, but I usually tape one eye closed at night, not both. It comes off from eyelid and eyelashes with no discomfort at all. And..I can use it more than one night.
Shirley

[snelsen]

in reply to: was surgery a good choice? #1182391

This can be confirmed by other sources, but I am pretty darn sure that only total thyroidectomies are the standard of care at this time. Not because it is easier to avoid the parathyroids. Not al all.

I really emphatically disagree with the statement in an earlier post today, that stated “On the one hand if all the thyroid tissue were removed it might be hard to prevent parathyroid and vocal cord injuries.”
I think this is incorrect.

The standard of care for thyroidectomies is a TT, or total thyroidectomy. Docs have found this is the best way to predictably manage thyroid replacement.

And the reason for removing the entire gland is to reliably manage the replacement of thyroid hormone.

Leaving a little bit of the gland proved to have an outcome of having no idea of the predictability of future hormone production, making an already complex treatment plan of thyroid replacement, even more challenging for docs and patients. To my knowledge, this was discontinued in the late 1960’s or early 1970’s. But it doesn’t really matter.

The big point is that TT is a very safe surgical procedure when done by a skilled surgeon who does thyroidectomies.

A good topic to discuss with a surgeon.
Shirley

[snelsen]

in reply to: Weight Loss, Dose Change & Symptoms post TT– Need Advice ! #1182404

Wow. I am so sorry!!
I am very concerned and puzzled why your doc prescribed Metformin. Please ask the reason. Or get another opinion. This is a very significant drug, should not be used for some side effect (which happens to be weight gain, I think) It is for diabetes. Beta blocker makes sense.
WW sounds wonderful.
Your labs would mean more if you had the ranges along the results.
I have another concern that your endo should be looking at the trend in your labs, AND your symptoms, which are definitely Graves’y.
Any chance you can ask a lot more questions about this? Coming back when you lose more weight is not treating Graves’, in my opinion.
some metformin info:

http://www.mayoclinic.org/drugs-supplements/metformin-oral-route/side-effects/drg-20067074

Of COURSE, you know we are fellow patients. But if I were you, I would have the above questions and concerns, it seems kinda wrong to me.
Shirley

[snelsen]

in reply to: Well, here goes! #1173699

hi AzGravesGuy!
NEVER stop writing completely! I feel like I know you! Your post has the most longevity of any on the site that I can find!
I would really, miss you.
If I ever go to Az. I will want find you!
So glad things are going well for you. About damn TIME!!!!
YOU HAVE YOUR LIFE BACK~ Isn’t it great???
I really “get it”
Never “get” TED that is my advice to you.
Shirley in SEattle

[snelsen]

in reply to: Pondering TT #1182397

Be sure to read AzGravesGuy’s latest post of today!

I am an “instant gratification” person if I have a choice.

I chose TT cause I wanted the damn thing GONE! As it really was,
back then” I am quite old!) they did subtotal thyroidectomies, the theory was to leave a tiny bit of gland to excrete a tiny bit of hormone.) So in my case, they did leave that tiny bit, which eventually just stopped “being.”

Methimazole was not an option for me, not sure why, perhaps it did not exist. RAI was quite new then, but still, I am familiar with health care, found a good surgeon, and the whole thing was a breeze. At some point, I began taking Synthroid, and it has been seamless for me, other than a bump or two in road pertaining to my other health problems.

I thought Graves’ was hell, but 50 years later, I developed TED, which was worse for me because of the severity of all stuff. But today I can read, drive, see and…..as everyone says about every darn thing,
“it’s all good!”

But it is a personal preference thing, if you read on this forum, you will find that some people had reasons, some did not. Occasionally removal of the thyroid is needed for other reasons. It is an easy procedure to recover from.
Not one person who has known my incision was there, can find it!
Shirley

[snelsen]

in reply to: Hi all, back in touch #1182184

Hi Debra, I am JUST walking out the door,home tomorrow. So glad you wrote. What a tough time you have had! i have just one question or suggestion right now. I wonder if a 2nd opinion from a neuro ophthalmologist, or even another eye doc who is VERY FAMILIAR WITH TED, might be helpful for you.
Regarding wearing a patch, if you have mono vision if you cover one eye, a patch WILL help. Some people have one lens of their glasses fogged over temporarily. 2nd question is I would ask WHY he/she says prisms would not help. They helped me a LOT when I was in the active phase with terrible double vision, the only way i had single vision was to look down at the floor. It is so so demoralizing.

I am also suggesting to you that antibodies are not really the measurement on when to proceed with surgical correction for TED. TED has its’ phases, active or hot phase, and the cold phase. It varies, but the way I could tell,and my multiple eye docs knew, was when my eyes were not continuing to change anymore. I did not have radiation on my eyes, it is controversial, with some docs doing it, some docs not doing it. My doc was not in favor of it. All during TED, I saw a neuro/eye doc regularly, and a pediatric eye doc, many eye tests, for color and visual fields. YOu want to be sure you do not begin to lose vision and have optic neuropathy. I did and so had surgery in the active phase to save my vision in my right eyel
Gotta go, more tomorrow.
Glad you wrote, SO SORRY you have had a really crappy time with this.
Shirley

[snelsen]

in reply to: New to Graves Disease #1182384

Welcome. You have a lot of new friends here. I am hoping that you can realize that you will be well again. I do not know how your grandmother and mother are doing, or how they did. It is a path we all take. We get the diagnosis. We don’t feel well (this is why.) We are not ourselves! The usual path is to take anti thyroid drugs (abbreviated here to ATD) and we begin to feel better. If our heart is beating very fast, the doctor will probably prescribe another pill, called a beta blocker (slows the heart rate, this is a good thing.) Then you have choices of treatment. This website has a lot of good information, and/or you can use the SEARCH part of the forum, and type in various words, like, treatment, surgery, RAI (for radioactive iodine) Those two are treatments, and some people stay on ATD’s for quite a while, and/or they decide with their doctor what they want to do.
YOu WILL NOT be sick forever. You will be fine again. You will be able to care for your daughter, live and love a long life. Glad you have your mom in your life, she should be a great example that things,and you, will be fine again. She sounds like she is there for you.
Please continue to write.
Shirley, another Graves’ patient (a LONG time ago, it developed in my 20’s and I am now in my late 70’s. I had surgery, and I take Synthroid.

[snelsen]

in reply to: a bit of history #1182356

Hi De!
Thank you!

I had one more thought about tinnitus! For me, it is part of my world, like the outdoor noises of birds singing, bees buzzing. When I DO have a rare moment of silence that I notice, I almost wonder if something is “not ok!” Like if all the birds stopped singing in the middle of the day, like they did when we had a total eclipse a few years ago! They thought it was nighttime!

Re where you live and where you are from! What EXCELLENT taste you have, combining Hawaii with South Dakota! I am from Iowa, so we both know what REAL winters are like! Although East coast and all of the Midwest really got hammered this past winter!

Re optic nerve atrophy. Glad you are being treated, but be sure your vision is not getting worse. It is possible to lose your vision with optic atrophy. I responded to Steroids, but only when taking them, and I definitely did need the OD to take the pressure off my optic nerve.

Re having things somewhat normal! That is a very realistic way to look at Graves’ and TED. I am always aware of my eyes, they are always dry,I an am always photophobic, and constantly patting pockets and backpacks to be sure I have slipover sunglasses with me! I try to remember always to have a visor to slap on my head if the glare of the sun interferes with my vision. And that, unfortunately, will be my lifetime baseline. Oh well. I can see, drive and read. All very big pluses!
Shirley, fellow Midwesterner

[snelsen]

in reply to: a bit of history #1182354

Re tinnitus, or ringing in the ears, hearing crickets, etc.
I have had that since I was about 12. Sometimes surprising periods of silence, but present almost always. Does not bother me at all. Maybe that is a choice.
I don’t think it is related to much of anything at all, several of my relatives had the same thing. My docs say no cure. Not a problem for me, because the tinnitus really does not bother me at all. To my knowledge, my hearing is fine, with the exception that the loud music my baby boomer kids listen to, kills my ears, the commercials before a movie the same thing. seems too many things are too loud!!!
Shirley

[snelsen]

in reply to: Experiences with recovery period after strabismus surgery? #1182347

I will write more extensively tomorrow. I found this surgery so easy! It was wonderful for me. When I had this procedure, they woke me up, asked me if I saw one object or two. It was very successful.

It has been my best surgical experience. I am so sorry that your mom
still has double vision. It is possible that after the swelling resolves, maybe it will be better. Very possible. I do know, though, that sometimes it does not always work the first time, for whatever reason. I’d guess because the surgeon did not move the origin and insertion of the eye muscles as much as needed for mono vision. But there may have been other contributing factors. so that is the question i would ask. Why does she still have double vision?

I hope that it improves over the next week or so. do write again.
Shirley

[snelsen]

in reply to: Abilify #1182338

DUH!!!!
Yep, brondack!! Three little letters makes a lot of difference! Of course, the word “NOT” BELONGS IN THAT SENTENCE! Thank you so much.
Shirley

[snelsen]

in reply to: Compound T4/T3 #1182331

I wonder if it would be better for you, if you want to continue T3 and T4, to take the pills separately. Cytomel is T4, I think. Then have a separate RX for your T3, levothyroxine. Might be cheaper, too, than a compounding pharmacy, and more reliable.

But I do have a bias about compounding pharmacies, since there does not seem to be much regulation of them. Worth exploring that more than I have.
Shirley

[snelsen]

in reply to: Abilify #1182336

Wow. And gosh.
Hi Teri, I have forgotten some of your prior history, if it on the site. First of all, of COURSE you had trouble dealing with a GD diagnosis!! Everything is working against us when we are diagnosed. That means you are entirely normal!

Presume you have read enough on this wonderful forum to know that without exception, this diagnosis is upsetting, and we get it, we are usually having anxiety, tremors, feel crazy, weight loss, fast heart rate, high blood pressure, tremors, and on and on. And usually we have not been diagnosed right away, cause it is too frequent that many docs just decided to throw some other pill at this crazy lady, and don’t even think of Graves’ or do the labs to find out. It’s too frequent, unfortunately , to be prescribed an antidepressant or antipsychotic, when the Graves’ diagnosis is missed completely. This is a service to none, and could be dangerous for that person to continue with untreated Graves’.

Ok I am off that soapbox now.

None of us do a great job dealing with Graves’. It makes us crazy. THen we take an ATD, and frequently a beta blocker to slow our fast heart rate, and we begin to feel a bit like ourselves again. Then we move ahead to treatments, ATD, RAI or surgery, a thyroidectomy. Is the methimazole three times a week giving your normal labs? Do you have a TSH, T3 and T4 drawn for your labs?

Just the usual reminder that we are doctors, but fellow patients, I do have a couple thoughts for you to consider.

For your arthritis-have some of the lesser big guns helped your arthritis at all? Like ibuprofen?
Here’s some reliable info about your drug, which you may already know:
http://www.rxlist.com/lodine-drug/indications-dosage.htm

Ask yourself. Has the Effexor helped, made a good difference in your life, or was how you were feeling related to Graves’.

And. Abilfy is big drug. Here’s a website about it. My grandchild is on it, and he is carefully monitored every month.
Here’s a reliable website about it.
http://www.nimh.nih.gov/health/publications/mental-health-medications/nimh-mental-health-medications.pdf

I am wondering if you really need a caring and concerned doctor, who will look at you as a total person. Depending on the degree of arthritis, you may need to be followed by a rheumatologist for that. But they all should be communicating with each other. And they should carefully consider what you are already taking, before prescribing more drugs. It seems more appropriate for a visit to a psychiatrist to review the mental health meds and the indications there might be for you to take both of them.

Now, these are just thoughts, kinda thinking out loud, thinking what I would want and deserve if I were in your shoes. Feel good about writing back and saying your thoughts about these thoughts.

Maybe Kimberly will chime in here, I have never heard of taking an ATD a few days a week, but this not an area I know about at all.
Shirley

[snelsen]

in reply to: double vision #1182325

I suggest patching, and exploring prisms. It is my opinion and personal experience that it won’t go away. The muscles are all fibrosed, swollen and that is the way they will stay. Fibrosis does not get better.
As was mentioned by others, and as PattiMeg said, i found strabismus surgery a procedure that made my life worth living again. the double vision was impacting everything I did, I had to quit my job.
You will have mono vision if you patch one eye. i pretty much followed the trail that PattiMeg did in the interim before strabismus surgery. I could hardly wait for it! Marvelous.
Shirley

[snelsen]

in reply to: Compound T4/T3 #1182328

That seems like a huge jump to me.
I don’t have any experience with the compound, and from what I have read, the doses of a compound drug are unpredictable and unregulated.
So, for me Graves is messy enough, and i stick with Synthroid. I did not check when your last post was, but it has been my experience that after a change, or getting a lab, 8 weeks is the very least amount of time to wait,and 10-12 is more representative of what is really going on.

Guess we’ll see how you feel with this increase. The other thing about adding T3 to T3, is that if you did do that, I believe that because of the half life of T4, it needs to be taken 3-4 times a day. There is quite a daily up and down with T4.

However, I am just yakking about what I have learned along the way, so since you want to do this, try to remember to wait at least 8 weeks if not longer for another lab. And notice how you feel. If you feel a rush of hyper feeling, followed by a let down and a more hypo feeling in a single day. Record your symptoms, how you feel, and changes, so you have a good record for yourself and your doc.
Shirley

[Author]

Posts