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in reply to: Newbie with Graves – #1170776

To Modo. I do suggest you go to a good ophthalmologist who is familiar with TED thyroid eye disease, so you have good care, good measurements,and good advice. If you do have TED, there is a LOT to learn about it. If you have this eye problem, there a couple stages. In the active stage, you eyes can change a lot or a little bit. Sunglasses, eye drops and eye lubricant (both preservative free) are helpful.

I am not familiar with thyroid stomach bulge, never have heard of it nor did I experience it ever. However, now that I am older, (older than you) I have a bulgy abdomen that I never had in my life, and I am not overweight at all, and very fit. I don’t like it either, but I see the same tummy on most women I know. So I am not much help there.

I have had breast cancer twice, different breasts and different pathology.
I am very perplexed that you were told that Arimidex and Synthroid have drug interactions. I take both drugs, and I know I need both of them.
Here is one reference of many, but I suggest that you revisit this subject with your doctors and or pharmacists. Here is one site I found which I copied for you.

Interactions between your selected drugs
There were no interactions found in our database between Arimidex and Synthroid
However, this does not necessarily mean no interactions exist. ALWAYS consult with your doctor or pharmacist.

Arimidex is in the following drug classes: aromatase inhibitors, hormones/antineoplastics.
Arimidex is used to treat the following conditions: Breast Cancer, Breast Cancer, Metastatic, McCune-Albright Syndrome, Pubertal Gynecomastia.

Synthroid is a member of the drug class thyroid drugs.
Synthroid is used to treat the following conditions: Hashimoto’s disease, Hypothyroidism, After Thyroid Removal, Myxedema Coma, Thyroid Suppression Test, TSH Suppression, Underactive Thyroid.

I don’t know anything at all about cortisol levels, and do not believe that this a critical path for having Graves’. I guess you can ask your doc that question, too.
Shirley

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in reply to: Crazy Journey #1173165

Hi, welcome to this forum. It is the best there is. So glad you found us!~

You have certainly had a eventful medical ride lately! The diagnostic trail of events is really an amazing one. I am surprised that you did not have a thyroid panel drawn long ago. Sounds like your mom was having reservations about all that was going on, and I sure am glad that she expressed her concerns.

Well, in reading your post, I am not sure if the mass *is* your thyroid gland. Or is it a “different” mass?
As Kimberly said, many people have thyroid nodules which don’t mean anything, and are benign. Your docs will confirm that.
So, as others have said,you have two issues-maybe.

One is Graves’. That cannot be ignored, or untreated. I’d like comment on the option of your comment of just working through it and waiting till the thyroid kills itself. That is not an option, perhaps there was a misunderstanding about that choice. I believe you know the three options of surgery, RAI and ATD’s.

The other is the mass. If, indeed it is a mass separate and different from an enlarged thyroid gland, I would imagine the docs will order further tests, perhaps more labs, to have an idea what they are dealing with. I would imagine, too, that it seems that someone would tell you that they would like to biopsy the mass first. At this time, from what you said, there is no documented evidence that it is malignant or benign. Or maybe you did not address it in you post.

I imagine your endo will want to have you take an ATD anti thyroid drug, and perhaps a beta blocker, if your heart rate is high or if you have other cardiac issues probably related to Graves’.

If you have a thyroidectomy, there is a preparation for that, and you will learn about it from the docs and on this site from those of us who have chosen surgery.

If there is a discrete mass in your neck that needs to be addressed, ie, excised, I imagine you will be seeing more surgeons, possibly an ENT surgeon as well as a general surgeon. Sounds like there is a lot to sort out.
It is a good idea, as your mom knows, because she has worked in health care all these years, to be very vigilant and ask many questions. I am a big proponent of 2nd opinions. And 3rd opinions. This is a very interesting experience, especially when the reports differ, sometimes contradict, what you have heard from the first docs. And where they all agree, and confirm the diagnoses, it is very reassuring.
Do write again as the days go by, you have a whole forum of new friends, and good ones, too!
Shirley

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in reply to: What my surgeon said #1173139

Hi, Vanisle gal, just a brief note now. Later in the day, I want to take the time to reference some specific posts that are very helpful and current from people who chose a thyroidectomy, as I did. You have probably already seen that most of us have our own reasons which either evolve over time after weighing the pros and cons. And our pros and cons vary, and are as individual as we are.

I chose surgery. From my view, it was quick, there was not a long waiting period afterward to take back my life. I was in my early 20’s. I had a good general surgeon who “did” thyroidectomies. I had pets and animals, did not want to bother with precautions. I wanted to have a 2nd child when I decided I wanted one, and there were no precautions regarding pregnancy as there are with RAI. I think it helped me at the time because I had see the surgery in the operating room (I was a student nurse at the time.)

Sometimes we hear the cautions about the complications that CAN happen with surgery, and they get processed by the person who is going to be the patient as extremely scary. As an example, taking KI drops (potassium iodine) a few days before the surgery, does reduce the vasculariy (amount of blood flow to the gland, and that is a good thing. But it makes sense to do that, just as people are told to not take any anticoagulants (aspirin, motrin etc) before any surgery, even having your wisdom tooth pulled. So it’s good medicine to do the pre op that way. I can still remember the taste of those drops, though. as I recall orange juice helps cut the metalic taste.
It sounds like your surgeon is very competent, very thorough, doing all the preparation he needs with the tests to know the landmarks.

Anesthesia has changed so much in the last 20 years, all for the good. almost everyone I saw in pre-op right before they go in for their procedure, had zofran pre-op and intra-op, just as you plan to do. If you read and hear from others, I think you will find that nausea is a complete non-issue with this surgery. IT was for me, zofran did not exist back then. Generally, it is the belly surgeries and some ear/ENT surgeries-and longer surgeries- that people experience nausea with. I had no nausea, a slight sore throat, mostly sore neck muscles. The surgery lasted less than 2 hours. But it is good to tell the anesthesiologist if you have a history.

I just thought of two recent experiences of good posts to read.
Adenure (very recent) and lhc11 (or lchll, I can never remember.
In summary to my brief post which is not brief anymore, I chose surgery, I did not want RAI, and would chose surgery again.
Shirley

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in reply to: Orbital decompression is a go #1173107

Hi gatorgirly! Aren’t you in Boston now? Maybe you should change your name to lobstergirly! (:

I had an ENT do the medial side of my OD, the same thing that has been proposed to you. Seemed to make sense to me. Especially because that is the way the oculofacial surgeon did OD’s in his practice. It was a nuisance ’cause the ENT lived relatively far away from where I am in Seattle. But that’s a small thing. I had the OD for optic neuropathy, and I was in the active stage at that point. It did save my vision. I had no double vision as a result of the surgery, but I had terrible double vision before the surgery. I had it in three fields, and it was terrible. I had none of the listed complications after my OD. But afterwards, I was not able to close my upper eyelid. Still can’t.

I think I wrote a lot about my OD experience, so you should be able to find it in the search box. I pretty much told every detail. In summary, the two main things I suggest are:
-elevate the head of your bed as much as you can. I found that it worked best if I put blankets, multiple pillows, UNDER the mattress, all the way across the bed.
-Use cool ice packs almost all the time for the first 3 days for sure. I did have help, someone maintaining the packs and bringing them to me.

In terms of pain, I had very little pain. But I attribute that to the two listed suggestions above. I went for a walk in the neighborhood the 2nd day, and tried to sit upright in a chair, cause I got tired of the bed.

I just saw a surgeon last week, he suggested that I have a 2nd OD on the prior eye, and one on the right eye. I am not sure about this, cause I have had my strabismus surgery quite a while ago, so might risk having double vision. Counting both eyes, and including upper and lower eyelid surgery, I hve had nine procedures since the beginning of TED.
Shirley

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in reply to: Alcohol and Tapazole #1173103

Hi Alyd, I think you have received great advice from everyone. And reached your own good conclusion. In my post, I was trying to look at your situation in some kind of a realistic way in the event you decided to go, cause it seemed like you might really go.
As you said, you would be concerned enough about all of this at the party, therefore it would not be as fun as the past six years.
I’m not sure that liver damage is a huge consideration if you drink at a party, but as others have said, you have the other unknown of just beginning your ATD.
Nuff’ said. Plan something nice for you and your husband that evening.
Shirley

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in reply to: Alcohol and Tapazole #1173095

Looks like it is totally your call! Sounds like fun. Probably it depends on how you pace yourself. if you really get hammered, you will probably be sick. If you have some alcohol now and then during the event, I imagine you will be fine. I imagine different people will define drinking from 12 noon to 12 midnight in various ways. You’ve got the go ahead from your doctor that you can drink with the meds. I don’t imagine anyone would ok drinking the way you presented it, for they might not interpret what you mean correctly-meds or no meds.
So-what do you plan to do? I pretty much follow the “moderation in all things” rule” which includes alcohol. Maybe you can take the middle of the road choice this year so you can enjoy yourself and see your friends, but not get clobbered and comatose and puke. and I never drink if I am driving. Period.

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in reply to: Help With Phobia #1173059

Hi, Naisly,
You are not a schmuck! You have a situation with Graves’ that we all hate. Plus, your very legitimate, diagnosed phobia, which is another medical condition, make a very difficult situation even more difficult for you.

I agree with your on comment about the psychiatrist. How demoralizing to be dismissed like that, and be told to “fix it” with the very thing that is fearful for you.

Many of us have had so many disappointments and bad experiences with endos who don’t seem to care, who are dismissive, or controlling. There have been others from Canada on this forum, you may be able to find some of them if you put Canada in the search engine. Possible that you might live in the same place as someone on the board, and you could contact them with a PM, see if they are happy with their endo. An endo is an endocrinologist, they are generally the docs who treat hyperthyroidism. Some are more interested in this than others. Many specialize in diabetes. But they know about Graves, for it is an endocrine problem.

There is no reason at all for you to feel lucky! Most of us are NOT happy that we ended up with Graves’.
Many of us have family members who don’t understand,and who don’t “get it”at all. It helps a tiny bit to realize that before we had Graves’, most of us have NEVER heard of it, and had no information about it, and the implications of having it.
It helps to make a list of questions for your doctor. Know them before you go in, as much as you can. Also ask him/her if there are any options for you to explore actual help with your phobia diagnosis, and/or I am wondering if you would profit from a support group of people with phobias.
Shirley

If you have read the board very much, you probably have learned that all three treatments are chosen for totally different reasons. Unfortunately, continuing to live with Graves’ and do nothing is not a good option, and can be a very dangerous one. You are certainly not the first person to consider that! It is a long road back to feeling like yourself again. and even harder, when you like the way you feel now!

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in reply to: Help With Phobia #1173057

Wow. Thanks for joining us. It does sound like you have some good health care providers in your life, presenting information and some options. But that does not make it any easier for you. However, phobias are serious things, and sometimes, since yours of of pills, it can interfere with your well being. Much easier to avoid heights, try to stay away from spiders.
Have you have any really good therapy about phobias, and/or yours?

I am speaking as someone who now has “iatrogenic” hyperthyroidism. Iatrogenic means physician caused, or caused by the health care system. Which means, that for quite a while, my endo kept me at too high a dose of Synthroid because I liked the way I felt. Full of energy, always on the go, never stopping…this was a long time ago. Said my suppressed TSH was normal for me.

The result? An increased risk for atrial fibrillation, and a definite accelerated degree of osteoporosis, beginning at an early age, my early 40’s. My heart rate, except for when I was initially very hyperthyroid before my surgery, has
always been in the 60-80 range. When I was initially hyper, it was 130-140.

So now I am stuck with my suppressed TSH, which does not budge not matter how low we decrease my Synthroid. We went so low in order to resolve this, and reduce my risk for the things I mentioned, that I because super hyPOthyroid with symptoms, but not by labs.

You cannot learn a lot from my story, except to realize that this is serious business, and you can really hurt yourself by doing nothing. The phobia makes it much hard for you. I hope someone else on the forum can share their experience with phobia, if anyone has them.
Wanted to welcome you before I hit the sack! I am tired.
Shirley

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in reply to: THURSDAY NIGHT AT THE SAN DIEGO CONFERENCE #1173048

Perhaps I was! I remember all of you, but don’t recall that specific evening. Everything was so new then, I felt crappy,and I am sure you are right.
But nice to hear that this can happen again, and I will plan on getting there in plenty of time.
Shirley

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in reply to: Old Man at a Party… #1173090

Hi Alexis, that guy did not know what he was talking about, compounded by the fact that he was telling someone else’s story, probably had it all wrong.

I know you know the basics, you have done such a good job researching everything. You are at that stage now where your intellect can really help you through the next few weeks. There was a recent post by either Bobbi or Kimberly about how long it takes for Synthoid to “kick in” completely. I can’t reference it right now cause I am writing to you!

Yep, we must have levothyroxine. It is essential for life (ours and everyone elses.) So I find it hard to think that it causes cancer any more than life does!

I am very happy with Synthroid. Consistency over time is the main thing, I think. A couple times, the doc forgot to write “no generic” so the pharmacy filled the generic. It was for 90 days, so I took it that long. It may be just the psychology of me, I decided and felt that I felt better on Synthroid.

After many years, I went through the stage of wanting to try Cytomel. My endo said sure I could, his experience, plus evidence based literature said that it did not help many people, and most people saw no difference at all. Said if you do take it, it should be taken in divided doses, (which are harder to do, 3x a day optimal, 2x a day for sure.) That is because it is a big dump all at once if taken once a day. I did it for a while, saw no difference at all, and was not sure why I was doing it to begin with.

I think, with you, it is critical for you to remind yourself over and over and over again, HOW FAR YOU HAVE COME, HOW MUCH YOU HAVE BEHIND YOU, and realize that it really is a slow process to get back to your normal self. You are making progress. You actually have not been on the hormone long enough to reach much of any conclusion at all about much of anything (smile, smile.) This friggin damn Graves’ tries all our patience in the worst ways. We want to feel better right now. Especially since we (you) have taken so many steps in that direction.
How’s the baby!?
love, Shirley

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in reply to: Hyperthyroid and chest pains #1173085

Possible, not probable. Did you try calling the on-call doc? they can access the notes, call it in for you.
On the other hand, it seems you are doing a great job with yourself. Of the two meds, it is far preferable to take the ATD, as you are doing. Glad you went out to eat. It was cold in Seattle yesterday morning, so I made Tuscan bean soup, which really tasted good tonight after a really BAD Woody Allen movie. I reluctantly went, he is so full of himself, and the movie sure proved that. But if anyone is a Woody fan, this is not one his best ones. Glad I had the good soup to cleanse my palate!!
Shirley

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in reply to: Hyperthyroid and chest pains #1173084

Possible, not probable. Did you try calling the on-call doc? they can access the notes, call it in for you.
On the other hand, it seems you are doing a great job with yourself. Of the two meds, it is far preferable to take the ATD, as you are doing. Glad you went out to eat. It was cold in Seattle yesterday morning, so I made Tuscan bean soup, which really tasted good tonight after a really BAD Woody Allen movie. I reluctantly went, he is so full of himself, and the movie sure proved that. But if anyone is a Woody fan, this is not one his best ones. Glad I had the good soup to cleanse my palate!!
Shirley

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in reply to: Hyperthyroid and chest pains #1173080

I’m thinking that a trip to the ER is a waste of your time and money.
The thing that would warrant that trip, is a rapid heart rate, as I mentioned before. I’d be surprised if they gave you anything based on your symptoms now. Too many knowns. Hyperthyroid, history of anxiety, and basically a normal pulse rate. It would be hard to justify emergent treatment based on that, I’d guess.

Another suggestion-call the on call for the office, or, who knows, maybe your own doc is on call, explain the situation, and they can fax/call the RX in, if, as Since your providers seem to be online electronically, I presume, they can pull up the last chart note stating the plan. Is this possible? Not sure where you are in the U.S, but if it is not a 24 hour pharmacy, and it gets there, you should definitely call them and request them to expedite it. My local pharmacy at the drug store closes at 7 on Saturday, rather than staying open until 9.

Most of us are on a beta blocker, I do not see many posts about it bothering people. I suppose if your heart rate is really low, it might make it lower, thus could make you light headed, especially if you are volume depleted (not drinking enough water.) But it sounds like you doc wanted you to have it in case you needed it. Good question for the pharmacist and docs, but it seems that you already know the answer.

Tons of people take beta blockers for years, (remember I am not a medical professional, just using common sense. But I suspect it is fine to take Aleve. Now THAT is something you can check out right now with the pharmacist by phone or dropping by to ask your question.
Ask, “are there any contraindications to taking Aleve when I am on a beta blocker?”

I know that when patients come for surgery, we tell them to take their beta blocker, and we prescribe and sometimes give in the recovery room, Aleve or Tylenol. Pretty sure the pharmacist will tell you that it is a non-issue.
Shirley

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in reply to: Hyperthyroid and chest pains #1173077

Hi, welcome (to the club you’d rather not belong to, just like all of us!)
This forum ROCKS!
It has been a long time since I’ve been hyper, but I remember it WELL!
Couple suggestions.
1. First, call the pharmacy to see if the RX has arrived.IF the RX is at the pharmacy now, call’em now, ask them to expedite the preparation so you can pick it up today. In my experience, they are really good about this.

2.Re heart-What is your heart rate? Feeling the way you do right now, is pretty typical. The palps are typical, BUT if your heart rate is over 120, 130, if you don’t have a beta blocker available, you should go to the ER, give them your history, I am sure they will give you a beta blocker.
I Know you don’t want to do an ER trip.

In addition, if you have a history of anxiety, this is a perfect time for you to feel worried and anxious. With you history of panic attacks, you maybe can think about that, too. If you have a med available for that, and think you are having a real one, I guess you can consider that, too.

I am so so glad that you have decided to continue with the ATD. We really need the anti thyroid drugs to get us safe.
The wait and see option for this particular issue does not work, and cause a lot of harm to us.
Do write again. You’ll meet a lot of new friends on this forum.
Can you consider coming to the conference in October (info on home page.) They are great!
Shirley

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in reply to: Rituximab #1172928

Hi, I had to have an OD in the active phase. It’s worth it. But I sure would lean hard on your resources to find out who does a LOT of them. we are told to ask surgeons how many they do a year, and what their complication rates are. BUT GOOD LUCK FINDING OUT THE 2ND information. I had an OD cause of optic neuropathy. Worth it absolutely.
So sorry about the Rituxin. Crap. THis is a very fucked up disease. No other words suffice.
Shirley

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