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in reply to: Graves’ rearing it’s ugly head again #1182054

Hi WWW12,
Yes, it is possible that Graves’ is paying you another visit. I don’t recall the % of people who have true remissions. Depends a lot on how remission is defined, but I think it is close to two years. And then you can never be sure. We will always have Graves’.
I totally understand why you got your hopes up, which makes this even more difficult. So focus on getting better, being your ATD’s again (if the labs support how you feel, I suspect they will) and feel good first. Take it step by step.
I am sorry you feel so darn crappy, but the good news is that you can go back on an ATD, feel much better in a relatively short period of time. When you feel better, your fragile emotions get better, too, as you know.

Then, it is possible, that you join most of the rest of us, deciding which treatment to have. I believe you have probably read about them on this forum and maybe heard about them from your endo. This is not really a bad thing, for you now have experience of living with limbo, knowing that remissions are rare, and developing all the full blown symptoms of being hyper again is pretty terrible and life changing in a not so good way.

yes, you are right on,that it is very difficult to find doctors who are skilled, knowledgable AND compassionate. But they are there.

YOU WILL end up feeling good again, and knowing life as you want to know it. But now is now, and i totally “get it” why this is a big blow.

Shirley

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in reply to: Well, here goes! #1173686

Hi AzGravesguy, you are doing great! Continue to take it easy, you are a happy end of a vERY LONG road!!!! Read my post to to rachelmay that I just wrote, if you need it. Sounds like you are doing super cool in your recovery!
So so glad and happy for you.
shirley

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in reply to: 6 Days after TT – what to expect? #1182051

WELCOME TO NORMAL!!This is, (and you are!) very typical for this post op stage. Generally, you have 2-4 hours of general anesthesia, and it really wipes you out! Your body is quite surprised by this, and wants you (it) to take it easy. Each day, week, it ail be better. It is fairly typical to be more tired and fatigued, lacking in your regular endurance, up to 5 weeks. But most people find that things are pretty good at the end of two weeks, or a week and 1/2.

Same with eating! Your GI system, from top to bottom,have a big sleep! It takes a while for our marvelous bodies to “right themselves” from this surprise!
DO NOT eat when you are not hungry. No point. Some people do feel hungry, but find they eat smaller portions post op. Others are nauseated. Eat what you want, all those muscles are SORE cause your head was hyperextended during the surgery. No different that working out muscles that you have not used! THey are SORE!

You are doing fine. Take advantage of the break. Go through stuff to throw out. Read a book. Take naps. Yak on the phone (but your throat might not like that.) Do not push yourself. That is how must of us live, pushing ourselves all the time. Take it easy. Let your body heal.

RE Synthroid, it takes about 6 weeks to have an idea if you are on the right dose. You may need more, you may need less. Based on how you are feeling then. You can’t evaluate the Synthroid at all when you are post op and recovering from surgery.
Does this help a bit?
Shirley

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in reply to: Anyone here an expert on lab results? #1182028

Hi Amy, a big welcome to you!
The first thing you need to know(for yourself) is the accepted, normal range of all those lab tests. Labs differ. So the numbers mean little without the ranges which should be printed on the lab sheet. I would call the office, say you hesitate to go to compound meds, that you feel you have all the symptoms of being hyPO, and ask opinion of increasing your thyroid hormone a little bit. But better still, if you have a family doc, an internal medicine doc, maybe they are a better choice to manage your meds.

And we are not supposed to say much about labs, but easy to know the ranges for T3 T4 and TSH, look them up. So everything i am saying, is pretty much gathered from my OWN experience!!! (: The general range of TSH, for instance, is .4-4 in many places. Therefore, your TSH of 23, says that you are definitely HYPO and all the symptoms you mention fit with this. And this is the kind of thing that you need to ask your endo. Or SOME doc! So not sure about the ones that are indicated HIGH, did you write that, or was it not the results??

This is from the internet:

There, a TSH that is higher than normal suggests a thyroid that is underactive and not doing its job of producing thyroid hormone. So, in general, HIGHER TSH = UNDERACTIVE THYROID / HYPOTHYROIDISM.

And so is this:
What is normal range for t3 t4 and tsh levels?
In: Health, Laboratory Testing, Endocrine System [Edit categories]
Answer:
T4: Normal Adult Range: 4 – 12 ug/dl Optimal Adult Reading: 8 ug/dl
T3: Normal Adult Range: 27 – 47% Optimal Adult Reading: 37 %

I am inclined to agree with you that seeing another doc, taking your labs with you is a very good idea.

Regarding compounding meds- here is a discussion about them. Generally, not the best way to go cause there is no due diligence or FDA surveillance of the ingredients.
http://www.fda.gov/Drugs/GuidanceComplianceRegulatoryInformation/PharmacyCompounding/ucm339764.htm

Again, you know all this, but your age, and most probably being perimenopausal, is probably happening too.

If you find a good website, NIH, or academic endocrine website, ready about hyPO and hyper.

I have gone a bit beyond discussing labs, but you should have had all this explained by your doc. I agree with you that it is better to stick with regular meds right now, not go to compounding route, and continuing with thyroid hormone replacement until you get to that sweet spot. For labs to be reflecting where you really are, 6 weeks to 2 months is the time you should wait to get more labs.

In my own experience, I have never had any of the rest of the labs you had, good to have a baseline with that information.
you WILL be better.
***WHEN did you have your RAI??
I suggest using the search part of this forum, too, read the experiences of others.
Shirley

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in reply to: Double vision help? #1182009

Hi, a quick note to acknowledge your post, and let you know I know EXACTLY HOW YOU FEEl, if you find some of my old posts, you will read about it . Double vision terrible. The only way I could look with single vision was straight down at my shoesl I had the stick on prisms several times, cause my eyes kept changing, and i did not want to spend money having prisms ground in lens that would soon need to be a different strength. I did NOT have the experience of having free replacement of lens when i needed different prisms, i did not even try, for they said no. that is why i kept the patches longer when my eyes were changing every other hour.. Ski’s post is a good one, describing the whole darn thing.
This is a late night for me, I have to go to bed. WE can talk/write more in next day or two, and you can read at the end of my post the hell i have experienced with TED. Best surgery of all of them, and the one that kept my sanity, which was about to go away was the strabismus surgery, easy to have, gets rid of double vision, but has to be done when eyes are stable and the they can make changes on stable measurements. way too tired to write more welcome
Shirley

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in reply to: Agenda and New Webcast Info for Shiley Eye Center Event on Jan. 25th #1181942

Kimberly,
Sounds wonderful! I am sorry not to be attending.
If it is not too late, please ask Dr. Granet to address palatal grafts to lower lids, including the state of the “art” for this procedure, who does the graft site, what the standard of care is nationwide, and the outcomes.

Another thing to address for any surgical procedure, and in this case, TED, is how a patient reliably reports an unfavorable outcome, since the surgeons have no incentive to do that.

Thanks, Shirley

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in reply to: Smoking. #1181951

Barbra! WOW! I am so very happy for you. And very, very, super proud of you and of your husband. Thank you so much for your kind and appreciative words. You get all the credit!!! However, YOU are the one who did the hard work. As you mentioned, there is a loose causal relationship between being a smoker and ending up with TED. If my hellish, horrible, life-changing experience with TED, plus all the surgeries, botched and otherwise, played into the equation of your decision to stop smoking, it makes it more worthwhile to me to have shared my experiences. (and in a weird way, it contributes to having had TED just a little bit less awful, because it served a useful purpose for you!)

But back to the main topic, you stopping smoking, (and your husband) is a major and positive turning point in your life. I know it is not easy. NOt at all. It’s a day to day thing, and there are more rewards for you each day as time passes. Pretty soon, the snow (we don’t DO snow in Seattle) will be gone, and you can begin having nice walks, which you will not enjoy doing, and you will smell spring smells that will remind you of your childhood! It will be wonderful.
I’m sure you have decreased the chance of getting TED. And, of course, of getting lots of other stuff, as you already know. The risk/benefit ratio of being a non-smoker weighs in heavily on the benefit side. Yah!

When I did try smoking for just a few months, one memory that stays with me, even today, is the tobacco smell of people and their clothes, and of a smoker in general. The contrast is shocking, and we notice it even more as a non-smoker.

If the foundation decides to have a longer conference in the future, or even if they stay with the one day conferences, it it on the East coast, I’ll try to justify attending, and we can meet. I did go to a couple conferences on the west coast, and it is MARVELOUS to meet people who have posted on the forum, plus meeting Kimberly, too!

What a marvelous and wonderful end of 2013 and beginning of 2014.

Thank you again!
Shirley

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in reply to: New help for really bad dry eyes #1181940

Nancy, I am sorry I never did mention this when we discussed eye! I tried “bandage contacts” years ago, but because of two to four botched eyelid surgeries, my lids push the contacts right out of my eyes the minute I blink.
Glad it is giving you some relief. I have started to tape the “worst”elegy closed when I sleep, cause taping both of them is just too dangerous if I get up!
Shirley

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in reply to: How long for effect from methimazole #1181932

Teri. Just a few comments from my own experience. If you look up the definition of the words “vertigo” and of “tinnitus” you will find that they are different. Discuss this with your doc. Many, many, many people have buzzing or different sounds in their ears. This is tinnitus. I have it, have always had it, not a lot to do with it or about it or fix it. That pretty much IS the “answer.”
Vertigo is a different subject.

Sorry about your aversion, or the fact that you hate to take pills, but I hope you can figure out how to get over that. Taking the pills is being kind to yourself and taking care of yourself.

Not going to say much about smoking. YOu’ve heard it all. There are meds to help you, and certainly worth exploring this issue. Everything about smoking is harmful to you, as you already know.

Depression is tough. Hope the Ability helps you.

obnurse-You’ll be back to being “you” again, after you take your ATD
s and made there rest of your decisions of how to treat your Graves’.
Just like Flora, Laurel, barbra, myself and all the rest of us! We’ve all had similar experiences. You will find that when you (we) are hyper, we are very IMPATIENT!!! About every darn thing. You will begin to notice you are feel much more like YOU pretty soon. As has been said, all experiences vary, cause we are different people. I wish you the best! In the dumb journey that we have all taken.
Shirley

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in reply to: Pain with Graves Eye Disease??? #1181938

Hi, if you have someone prescribing prednisone for your eyes, does that mean you are seeing an eye doctor or a neuro-eye doctor? Sorry, I just re-read your post, and you ARE seeing an eye doctor. Sound like you do have a diagnosis of TED (thyroid eye disease) same as Graves’ eye disease. And, as Nancy said, I think you need to see a neuro-ophthalmologist.

You need to understand WHY you are taking the steroid (is it pressure on the optic nerve?) and what the plan of care is for you. Do not go to pain specialists, I don’t think that is where you need to be.

In answer to your question, I had severe TED, and YES, I had terrible eye pain when I moved my eyes. It is not unusual. Agree with Nancy, that you must see an eye doctor who is very familiar with TED. There is a lot of stuff that matters, in terms of treatment, and the progress of the disease. ANd, you need to learn more about it, which I won’t elaborate here. Surgery helps many things about TED, but not until the active (or hot)phase is over, but there are exceptions to that, the big one being pressure on your optic nerve. You should be hearing all of this from your eye doctor.
Shirley

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in reply to: Tapazole and Sore Throats and white spots on lips? #1181918

Agree with Nancy and Kimberly. This can be very serious.
For your own knowledge, Graves’ IS hyperthyroidism. You need to be seen. Now.
Shirley

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in reply to: 2+ years post TT…. feeling awful #1181946

Gosh, Rose, I am so sorry that all of this is hitting you all at once. Clearly, you do not feel well at all, rather you feel AWFUL, at many different levels and in many different places. I am so, so very sorry. I do care, and so will many others here.

As you already know, your biggest problem here is access to the medical system, i.e., a good doctor who will take a careful history and physical, and take care of you. AND not scold you! Most would not. But you are very fragile right now, and empathy and caring from the the health care folks will be as critical and as important as getting you on the right medications.

Regarding payment and insurance, this is just anecdotal information, but I encourage you to try very very hard to get covered with the Affordable Care Act in a timely manner, as soon as you can. I am aware of all the issues that presented themselves as barriers, but they are resolving or gone, and this is super important for you, so you can get care. Three of my neighbors have had very good experiences in the past few days.

Do I understand that you DO NOT have insurance at this time? I know you are working, and I am sure it is very very hard to do that, take care of your children, and be sick. Is this cause you have not been there long enough, or that you are hourly, and can’t get it? Whatever the reason, there have to be alternatives for you to get the good medical care that you need.

In my area, we have some free, and/or very low pay-what-you-can medical clinics. They are not urgent care, but established clinics. Is there anything like that where you live now? Can your wonderful formal endo contact a doc he knows in your area, and ask that you be seen? I know you have seen a doc where you live, the one who prescribed 125mcg of thyroid hormone. What would happen if you called the office and told them you were very sick, and your periods were lasting three weeks, you are feeling very weak. I guess the other alternative, certainly not a very good one, is to go to an ER, but you would not have consistent care that way. Although if you continue to have that amount of blood loss, with all your other symptoms, you could end up there in an emergency situation, which is not necessary.

I KNOW YOU KNOW THIS, but just sayin’. You need to see a good doctor who will examine you with all your symptoms, and order some labs. I am very concerned about you.

As you might suspect, certainly many aspects of the way you feel are directly related to access to care which is directly related to taking the right amount of thyroid hormone. Which, as you already realize, you really, really have to have now that you have had a TT.

Do write again. Once you have medical care, and get your thyroid hormone managed, I hope that many of your other symptoms go away. As you know, we are not doctors, here, but weight gain is part of being hyPO, as well as constipation issues and some of the other things you mentioned. So the biggest two jobs you have are to apply for insurance, and figure out how to get to a doctor. I wish I could help you do that.
Shirley

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in reply to: Where are all the TT’ers? #1181887

Sara, welcome to this wonderful forum. So glad you are here.
Graves’ IS a nightmare, it really is. It is so hard, so difficult, to see yourself (ourselves, myself) turn into a totally different person WE barely recognize, let along our friends, neighbors, employers, kids and the person at the grocery store! It was very, very hard.

I am long past that stage now, and began posting on the forum because of eye issues many years later. But I remember that stage (thought almost 55 years ago) the nightmare that it was.

As you will read, and have learned, there are three ways to go. I chose surgery, because it seemed the fastest way back to being my normal self. It seems to work, and I liked the fast part!

There are some wonderful posters here, in your age range, who are parents, who’ve had TT’s. Sue is a shining example and if you use the search posts part of the forum, you will find many more.

The most important thing I have to say to you right now, is that you WILL be better, life WILL pretty much be back to normal, and you WILL take a pill the rest of your life, but hey, who cares about that? It is a great trade off.

Shirley

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in reply to: How many have had proptosis reverse naturally? #1181206

My experience is that prednisone helps A LOT with double vision, but the minute it is stopped, the vision gets worse again. Unfortunately, we cannot have sustained doses of pred for that reason.
Shirley

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in reply to: Double vision getting worse #1181873

Have you had Graves’ six years? TED happen the same time as Graves’? How long have you had TED? Much shorter time? My active phase of TED lasted FOREVER! I had severe double vision. The glasses alone would not have ever corrected it. Did you consider strabismus surgery? (eye muscle surgery)
After I had that, I have single vision (most of the time, enough to be happy about it) with prisms “6 up” in each eye. Every now and then, I have double vision at the end of the day. I CANNOT tolerate vision at all without my glasses.
My history is listed below.
Shirley

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