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in reply to: liver function and methimazole #1173427

I am guessing you already have a pediatric endocrinologist involved in her care. I’d ask for more information and the bigger picture, so you feel more comfortable with the plan when you understand it. If you continue to have a lot of concern, try for a 2nd opinion. Although i know ped endos are not abundant.
Kimberly had good advice. Report any of the symptoms she mentioned, and also check with the ped endo, asking the same question of him if you have not already been told, or if you want reassurance with this.
Congratulations on your new baby girl/ Sounds like she is having good care.
Shirley

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in reply to: Cycle touring post RAI #1173435

Your trip sounds MARVELOUS!!!!! Are you from the U.S? Or Europe?

I do not recall if you are on thyroid hormone replacement now, when you had your RAI. I am assuming you can get your RX for 90 days. If you are going to be gone longer than three months, tell this to your pharmacy provider. Explain the situation to them, ask if you can have the one time exception (it is usually once a year) to have your insurance plan cover having your drug for the time you will be gone (and add a couple weeks to that, to provide for the unexpected.)
I did this when I went to China and Tibet, and they did grant it. That is BY FAR the easiest way to manage this. If you are going to be gone 3 months or less, but the timing of the refill is wrong, explain that to them. They should be fine with refilling it early. I was on Synthroid, and did not want to mess with any of this in foreign countries. And even in English speaking ones, you would probably get a generic, and if you are on one thyroid hormone, it is better not to switch to another one.
I suggest the following:

1. Go to travel medicine, get the shots they require or suggest. You need them. we are still the same person, even with Graves’. It’s like, but not the same, as having high blood pressure that is controlled with meds. You have high blood pressure without the meds. But when taking the meds, you don’t have high blood pressure. Thyroid hormone is something our body produces naturally. We are replacing it, cause our bodies let us down in this area.

2. Explore travel insurance carefully. Generally, it is for a crisis situation,injury, stroke, heart attack, unforeseen accident of some kind.
Travel insurance is tricky. If you are young and healthy, I suggest exploring the student travel services regarding travel insurance for good information.

3. Take your own supplies of tylenol, ibuprofen, benedryl cream and pills,
band aides. And LOMOTIL! (for travelers’ diarrhea.( I am sure I am forgetting some stuff. I went to travel medicine at the Univ. of Washington. Any university is very familiar with what you should take, what you need. They are dealing with people from other countries, and us traveling internationally all the time.

4. Labs, blood work. The best thing to do is have labs before you leave. Unless you find yourself in a real health situation with Graves’, which is probably unlikely, given that you are planning this trip. Consult with your endo on this. Think of all the problems we have communicating with our OWN docs, not to mention someone speaking Mandarin. Kinda depends if you will be on/off the beaten path.

5. Vaccinations and shots. I would not neglect them. YOu need’em.

6. Hotter climates? Just like anyone else, I’m thinking. Drink safe water and plenty of water. Stuff you already know.

Medicine in China probably pretty good, with English speakers available. Depends on where you are. Same with India. Same with Istanbul, Turkey, my favorite country of all of them! Love Turkey! Super healthy food there.
Hope this give you some beginning thoughts!
I am so happy for you to do this trip!!
Shirley

[snelsen]

in reply to: Cycle touring post RAI #1173434

Your trip sounds MARVELOUS!!!!! Are you from the U.S? Or Europe?

I do not recall if you are on thyroid hormone replacement now, when you had your RAI. I am assuming you can get your RX for 90 days. If you are going to be gone longer than three months, tell this to your pharmacy provider. Explain the situation to them, ask if you can have the one time exception (it is usually once a year) to have your insurance plan cover having your drug for the time you will be gone (and add a couple weeks to that, to provide for the unexpected.)
I did this when I went to China and Tibet, and they did grant it. That is BY FAR the easiest way to manage this. If you are going to be gone 3 months or less, but the timing of the refill is wrong, explain that to them. They should be fine with refilling it early. I was on Synthroid, and did not want to mess with any of this in foreign countries. And even in English speaking ones, you would probably get a generic, and if you are on one thyroid hormone, it is better not to switch to another one.
I suggest the following:

1. Go to travel medicine, get the shots they require or suggest. You need them. we are still the same person, even with Graves’. It’s like, but not the same, as having high blood pressure that is controlled with meds. You have high blood pressure without the meds. But when taking the meds, you don’t have high blood pressure. Thyroid hormone is something our body produces naturally. We are replacing it, cause our bodies let us down in this area.

2. Explore travel insurance carefully. Generally, it is for a crisis situation,injury, stroke, heart attack, unforeseen accident of some kind.
Travel insurance is tricky. If you are young and healthy, I suggest exploring the student travel services regarding travel insurance for good information.

3. Take your own supplies of tylenol, ibuprofen, benedryl cream and pills,
band aides. And LOMOTIL! (for travelers’ diarrhea.( I am sure I am forgetting some stuff. I went to travel medicine at the Univ. of Washington. Any university is very familiar with what you should take, what you need. They are dealing with people from other countries, and us traveling internationally all the time.

4. Labs, blood work. The best thing to do is have labs before you leave. Unless you find yourself in a real health situation with Graves’, which is probably unlikely, given that you are planning this trip. Consult with your endo on this. Think of all the problems we have communicating with our OWN docs, not to mention someone speaking Mandarin. Kinda depends if you will be on/off the beaten path.

5. Vaccinations and shots. I would not neglect them. YOu need’em.

6. Hotter climates? Just like anyone else, I’m thinking. Drink safe water and plenty of water. Stuff you already know.

Medicine in China probably pretty good, with English speakers available. Depends on where you are. Same with India. Same with Isatanbul, Turkey, my favorite country of all of them! Love Turkey! Super healthy food there.
Hope this give you some beginning thoughts!
I am so happy for you to do this trip!!
Shirley

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in reply to: S/p RAI 9 weeks out and scared #1173430

Time for nighty night! Glad you have an endo appointment tomorrow. Good timing! He will probably reduce your med, and/or begin Synthroid. WRite after the appointment.
Yes, we all feel like crap, no matter what treatment we choose, until we get to that damn SWEET SPOT that takes more time that we want it to take so we can be our normal selves again. But it will happen!
good night,
Shirley

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in reply to: How Long For Beta-Blockers #1173363

Naisly, if you don’t have a blood pressure machine, you should purchase one.
Please realize that if you have not been drinking enough fluid (water, not coffee or caffeinated drinks) your BP can be low. If you drink a couple glasses of water, then take it again, and it is up, that is probably why it was low.

i think this forum is a great thing for you. But most of the suggestions we give you involve a continuing relationship with a doctor.
If the circumstances remain as you said, I suggest again that you make an appt with your GP, request that he either
1. Call the endo with all your info, get guidance on treating you if needed.
2. Have him call the endo, say you need to be seen urgently.

Naisly, you HAVE to take pills. You need to wrap your mind about this, and take them. You need to be very truthful with the doctor, ie, don’t take the RX get it filled, then throw the pills away. This is too serious for that.

If you continue to be untreated, you will probably end up in an ER. I do not suggest this, but if you get there, give a good history. ER’s are not the best place to get continuing care. That is not what they do. They will tell you to follow up with your doctors.

I sure hope things work well for you this week.
Shirley

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in reply to: Help With Phobia #1173067

Caro, I am not sure if you read my recent post. Pretty much the same as yours. However, from what I understand from what Naisly wrote, she does have an internal medicine doctor who first diagnosed her. But after that, it seems to be only the GP and the psychiatrist.
Naisly, is the internal medicine doc the endocrinologist? All endocrinologists ARE internal medicine docs, who take a year or two of an endocrinology fellowship. They have already taken internal medicine boards,then they take an endocrinology test.
I worked with a Canadian internal medicine doc who has just finished his residency, and was at my hospital to focus on endocrinology. His experience was the same as I described.

I am writing all this so we understand the terminology you are using when you refer to the internal medicine doc you apparently saw at least once and who diagnosed you/ Is this correct?

At any rate, I feel that you need treatment. It would take a lot of emotional effort, probably with no success at all, to contact the press, in my opinion.

As Carito said, when you DO take an ATD, you need to have the tests she mentioned, especially initially when you begin the drug, and for a couple of months after that.

Re phobia. Maybe you can work with your psychiatrist to transfer your phobia to something else. I am not joking, I worked with a nurse who had a severe phobia of blood. She worked with a doctor to transfer her fear to chocolate covered cake donuts, which she hates. Worked for her.
Do keep writing
Shirley

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in reply to: Help With Phobia #1173064

Naisly, do you have a copy of the labs and scan? It is my understanding (though I am not sure, so I am confident someone else will chime in here) that the radiologists, the nuclear med docs, are the ones who determine the dose for the RAI. As I read all your posts again, it does seem that from your view, and also because it is advisable to get treatment (beta blockers as you are taking, plus ATD anti thyroid drugs, and I get the impression you are not taking those???, then move on to RAI. Or, as Kimberly said, and we all feel, that when you call as many shots as you are able regarding treatment plan, the more confident you feel that you are doing something very good for yourself.

As I understand from your posts, the doctors involved in your care are the psychiatrist and your GP. Is there a third? Or did your GP diagnose your Graves’. Are you seeing an internist, too?
IF you are not on ATD’s, and you have Graves’ and are hyperthyroid, you should be on an ATD as well as a beta blocker.
One suggestion I have, is that the GP call an internist or an endo, fax your labs and scan to them, and ask them to tell your GP a beginning dose. Then, when you have follow up labs, he can send them to one of the docs, and they can advise you about the ATD dose.
Regarding the beta blockers, I believe the GP is very capable of managing that drug. YOur job, and it is important, is to keep a record of your pulse and
BP to report to him.
Does any of this make sense to you?

Regarding your partner, it is very hard for anyone else to begin to understand Graves’, especially when we are new, and don’t understand it ourselves!
I am sure that you simply want to get back to your normal self (minus the phobias) and the way to do that is to move on with this stuff.

Carito has suggestions about meds for your phobia, and it seems your psychiatrist should be able to help you with this. I suggest you request your psychiatrist, GP, internist if you have one, talk to each other, and/or the endo be consulted by phone, have one of these docs get an earlier appointment Maybe your GP? This possible?
Shirley

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in reply to: Thyroid Eye Disease #1173377

To runbarb. I understand how miserable you are. As Kimberly says, even the docs disagree on when the inactive phase begins. In your last post, it sounded like the different, or most recent surgeon, is the one who said your eyes were not “ready.” But I wondering if you should question that a bit more, for you are so miserable. Sounds like he performed different tests, so he has no real baseline, except his one time testing of you, which is his FIRST testing.

If you have patched your eye for over a year, your brain has “learned” that only one eye is working. Has anyone suggested you try the temporary prisms, (stuck to the back of your glasses) to see if it helps your double vision?
Seems like there might be another whole problem since you eye has been covered for a year. I wonder if a neuro ophthalmologist could offer an opinion here. As I write this, I KNOW how sick you are of going to doctors, getting eyes, measured, and all of that. I also know how demoralizing the double vision is.

I think, from your post, that you had an OD in the active phase??? What surgery did you have for the swelling and glaucoma?
Best to you in this struggle
Shirley

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in reply to: Thyroid Eye Disease #1173376

to Kimberly.
In my experience, and from what what both specialties tell me, there is little or no communication between ophthalmologic surgeons and endocrinologists.
And, in my own experience, neither specialty was not a bit interested in the progress or lack of it,with either TED, or Graves’. Maybe this is an exception, but I doubt it.

Did the presenter in San Francisco make this remark as a supposition he held, or did he present a body of evidence to support his comment.
Shirley

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in reply to: Thyroid Eye Disease #1173372

Synthoid is unrelated to TED. As Bobbi said.
As I have said in many posts, strabismus surgery has been the very best, most wonderful procedure in my 3 years of TED hell. Sorry, but that is what it is and has been for me. The double vision was terrible. As I “progressed” in the active phase, I was seen by a neuro ophthalmologist, who checked my vision to be sure that I was not losing it. As it turns out I was losing my vision, so I HAD to have an OD in the active phase.

But, your question was about strabismus surgery and when to have it. First of all, deciding when the active phase is over, and we can have corrective surgical procedures, is kind of a crap shoot, a little bit. It is determined by objective and subjective measurements, and throw in the passage of time. In other words, I am assuming that you have not have diplopia (double vision) measurement over the period of time you have had TED. So it might be a bit harder to tell by the objective measurements over time, cause you don’t have them.
My experience is this. when you begin to notice that your eyes are not changing every day or so, getting better, getting worse, etc. etc, there is a good chance you have begun the inactive phase, or cold phase.

Regarding what the eye surgeon said, I guess I would like to know what criteria he used to say that you are still unstable. Is the first time he has seen you? Does he have prior measurements specific for diplopia (doubt it, they don’t do that generally speaking.) But if it is a pediatric eye surgeon, who does strabismus surgery (not an oculofacial surgeon) and you have seem him before, it is probable that your eyes are still changing.

To further answer your questions-I thought strabismus surgery was a cake walk. No pain, IMMEDIATELY RELIEVED OF THE DOUBLE VISION. A miracle for me. Elevate head of bed for 2-3 days, use the ointment as directed. It is marvelous. Write with more questions. I did not have bruising, but I am vigilant about cold packs and elevating your head at night. I actually did that more than 3 days, probably 5 days.
Shirley

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in reply to: Ophthalmologist referral in Los Angeles? #1173329

There are two people on this site who have recently posted, both went to Jules Stein in L.A.
Shirley

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in reply to: Ophthalmologist referral in Los Angeles? #1173328

Hi Micki,
I have checked the reference for finding surgeons Kimberly suggested in her post. My experience, using it for myself, that it is kind of helpful. Not a lot. This is a new site, and just building up.
But, it seems that the same information can be obtained from the yellow pages, and sometimes more information. When I looked it up for my own area, the “go-to” oculoplastics surgeon that many docs recommended was not listed on the site, although he is a member of the national organization.

What I think you mean, when you are looking for a surgeon, is the same thing most of us want. And definitely what I want.

In the ideal world, we want to use every possible resource to find about a doc who will be the best surgeon for us, who has had a lot of experience,and with good results. AND. a nice person, as a fringe benefit. We want to find out how many procedures he/she do a year, and we want to know their complication rates, and what the complications were. But this is very difficult information to know, that is for sure!

In answer to your question about surgeons in L.A. area, when I have time, I will send a PM about what I have learned, since I am exploring the same area for the same reasons.
In the meantime, if you put Jules Stein in the search engine in this forum, you will discover a name or two of docs at the Jules Stein Center. I am not home right now, but I have a list of 2 or 3 more in your area, whom were recommended to me (at my request) from a surgeon in the Midwest.
The part we really don’t know, is WHY I am getting these names. Is it because they see each other at national conferences, and are familiar names? Or that they are friends? Hard to know this. I have found there is NO WAY to find out the complication rates of a surgeon with a procedure. But I know they are readily available, for I worked in a hospital in a surgery department, and they have meetings about this subject every month.

In an attempt to go someplace else, I have explored the area of where you are living. I have found that if you can talk to other TED or Graves patients who have already had surgery, you learn a lot~!
I have to go now, but will reply more later
Shirley

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in reply to: Hours until surgery #1173016

How is your son doing? He is about 2+ weeks post op now. Look forward to hearing from you!
Shirley

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in reply to: Hours until surgery #1173017

How is your son doing? He is about 2+ weeks post op now. Look forward to hearing from you!
Shirley

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in reply to: OK now what…RAI Seriously??? #1173299

Just a short comment.
I was euthyroid for over 20 years after my thyroidectomy.
I think we have to remember, that when we were our
“normal” selves, there were probably small adjustments made in the loop between the pituitary and the thyroid gland, made all the time, and all of our lives. Lots of variables govern it, probably some of them are not know. Certainly the passage of time (ie, aging!) is one of them.

So, I don’t think there are probably many valid conclusions comparing a euthyroid state, ie, no need for supplemental hormone, can be reached.

Plus, the current standard of care is, I understand, to obliterate the thyroid gland, so the dose can be regulated by docs more easily to our benefit.
The old standard of care was to leave a “little bit” of thyroid gland, with the goal of preventing us from being HYPER, but able to give thyroid hormone pills when we are HYPO.
My two cents.
Shirley

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