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in reply to: Anyone else allergic to thyroid meds? #1064064
For my own understanding, isn’t it also risky to have RAI when hyper?
in reply to: RDI 18 months ago then and now #1065015I think your post was not answered because RDI is not familiar to anyone/ Is it RAI, radioactive iodine? I bet if you relabel the title. it will be responded to and help a lot of people…
Shirleyin reply to: antianxiety drugs #1064038I think this is a decision you and your doc can make, but I would definitely be in contact with him about how to stop the drug.
I have no idea if you can take one now and then but ask the pharmacist. They probably would be able to discuss that with you.
I think there is room for all pathways to use/not use Xanax for a short while dealing with the side effects of being hype.
Depends on the individual, too, and what they know about themselves.
Sure wish you luck with this hyper rough spot, and as you learn from many others on this site, there is light at the end of the thyroid tunnel!
Shirleyin reply to: antianxiety drugs #1064036Hi Marta,
This is all my own thinking, plus some experience with working in health care. But not any of it said as a professional.
I have made a prior comment about xanax on this forum. It is a difficult thing to discuss, for some of the people on this forum are taking Xanax, prescribed by some doc. I think I recall from a past post, that the family doc prescribed it.
I suppose it can have its’ place in Graves’ if the pros and cons are clearly understood by all parties.Just as the whole focus of this forum is for us to have valid information about treatment options, I think it is equally valuable to have information about medications. In this case Xanax. It is a concerning drug, for it can present a whole new package of issues for someone to deal with. A good pharmacist will give the following information which I am paraphrasing in my own simplified version.
1. It is highly addictive, more than than any other depressant.
2. If taken, it should be for a short period of time.
3. When it is discontinued, it is CRITICAL to slowly taper the drug, not stop it abruptly, for that can cause very very serious consequences.My comments.
1. It is too true that SOME docs prescribe it fairly freely, and continue to do so because the patient cannot stop taking it, and the path of least resistance is to continue prescribing it. It is a very slippery slope. There is PLENTY of evidence based information on this, plus there are addiction centers for xanax addiction.
2. Withdrawal from the drug can be very hard. Needs to be managed by a doctor.
3. Having said all this, it is hell to be extremely hyper. If an anti-anxiety drug is used with the clear understanding that it is for the short term, and all parties agree to this, I am sure it can be quite helpful while someone is being treated with AT’D’s to reduce the hyper symptoms. If a person cannot take ADT’s, that can be pretty rough, for you are prevented from having the belief that your symptoms will gradually improve. In that case, I can understand the short term use i Sometimes it is more difficult to know how you REALLY feel, for xanax makes the world seem like a pretty nice, trouble free place. That is why people like it, this is very easy to understand.
There is a lot to consider. From my personal view, I do not have an addictive inclination, although some of my family members do (it could be anything, including chocolate covered cake donuts.) My own view is that I would not take the drug, because I know a lot about it, and for ME, the risk-benefit rewards come in on the risk side. But I think it has its’ place, if carefully administered and managed, with a slow withdrawal of the drug for short term use.4. My last thought. Anti-depressants are so widely used in this country. Graves’ is a very depressing and discouraging thing to have, whether hypo, hyper, or struggling with TED. I guess this is a conversation that each individual can have with their doc. I certainly have friends who have had positive life changing results from taking an anti-depressant. It has been suggested to me by several family members that I take an anti-depressant while dealing with TED and Graves’. It was my thought that the issues would not go away, and any rational person would be discouraged by dealing with these damn illnesses. But I did not want an anti-depressant, for I did not feel that I was clinically depressed. They certainly have their place, and perhaps their place can be helping individuals deal with these long term situations we are faced with as we march through these very difficult diseases.
Long response to short questionin reply to: Anyone else allergic to thyroid meds? #1064061As you think about what way you want to go, if you want to read the thought processes of others who have made the decision, I think if you put "surgery" and RAI in the search box above, you will see various views. There are some very good recent discussions. And it all boils down to what feels ‘right" for you. There are no answers. For some people, they simply know that they do not want to do RAI. They don’t even want to investigate it. And the very same thing can be said for surgery. In both cases, we want skilled docs who have had a lot of experience. And that does include RAI, for that is dose related, based on several calculations.
Sorry, I was thinking that the insurance thing referred only to future surgery or RAI. But right now you are not covered by anything, waiting for it to kick in? Including doc appts? I get it-finally!
Re iodine that Harpy mentioned He just mentioned it in passing. I agree c Bobbi, that is definitely a discussion, and probably not an alternative, for you to discuss c your doc when you have your appointment.
It is very very hard to be hyper! It is also not healthy for you. But you know all that, and believe that this does have progress and an end point, and you will feel NORMAL again! Yes!
Shirleyin reply to: methimazole side effects #1064748This update is from a long time ago, right? Not the past few days? Just checkin’!
Shirleyin reply to: Anyone else allergic to thyroid meds? #1064057hi, glad to hear from you so soon. Have not read your other post yet. Couple suggestions. If the beta blockers are not quite holding you long enuf (ie, heart rate goes up a lot) if you have not already done it, tell the endo, ask if there is a possibility to increase the dose or frequency a little bit. Re the Loratab, I do not know why you are taking it. It is the same as Vicodan, which is tylenol and hydrocodone. Do you know why you are taking it? Maybe that is a med you can simply stop if you like.
Usually given for post op pain, so not sure why you are on it.
Insurance? Can’t do anything about that. Oct 1 will roll around fast. Thyroid? It could be running amok. YOu know how you feel, plus a new set of labs (did you have them today) will tell you. But what is really relevant, I guess will be labs before your surgery, simply for information for the doc.
Choice of treatment? There are tons of good posts about choosing between RAI and surgery. I chose surgery in a heartbeat.
Simply because I did not want RAI, and the time period to mess around with getting regulated seemed potentially longer with RAI than surgery. I would think it would be even longer, in your case, because you have a lot of thyroid on board going into this thing. But that is just what I think makes sense. Total personal choice. Many on this site chose RAI and are happy with that choice.
I know you just had an appointment today, so not sure how much conversation happened. Did you say you prefer exploring surgery? Did you ask for one or two docs who routinely perform thyroidectomies? any surgery has risks, as you know.
I think it matters a whole lot that you choose what you want, not what a doc is pushing or decides you should have. Unless you can get valid, concrete reasons for his choice. Then you still have a right to explore the other option.
The worst thing you can do is choose an option you have reservations about. That is not a good place to be! Going to read your other post now.
shirleyin reply to: Anyone else allergic to thyroid meds? #1064055Hi. I am glad that you will be discussing this issue with your endo in the near future. This is a situation where other people’s experiences cannot help you very much. Because of your allergies, ATD’s are not one of the choices for you for treatment. That seems to have been concluded by your endo and you. As you know, that leaves RAI and surgery. At your future appointment, ask the endo the same question. I am not sure where you are with your labs, or how you feel. Both those factors, plus the goal of resolving this issue so that you do not remain in a hyperthyroid state, should be discussed with your endo. I sure appreciate your dilemma. Do write with an update. I imagine you already have these questions, but here are some suggest for questions to have written down when you see your doc. Another idea is to take a friend to take notes. Another REALLLY good idea, in my opinion, is to sign a Medical Release of Information form (ask for it at the front desk,) and check that you want copies of the dictated reports of your doctor visits, plus the labs. Then you can review the treatment plan at your leisure.
1. Am I hyper now? What do my labs say now?
2. Assuming my labs are acceptable, and I am not dangerously hyper, is it important to have surgery in the very near future for this reason?
3. In my situation, are there compelling reasons to have one choice over the other? (RAI, surgery>)
4. What IS my present status? How do we proceed from here? Is it possible to do one of these treatments even if my thyroid levels are not controlled, since we know that my allergy to ATD’s is not an choice to me to decrease thyroid levels?
Look forward to hearing from you soon after your appt.
ShirleyWell, I did it again. I wrote a whole post, and my log in time ran out, and I lost it. Not fair.
Hi Sandy, every time I write an extended email, and lose it, I worry that I will forget something in the next one.
You have put up with TED longer than I have. Very very difficult. Yes, I have light sensitivity and lots of tears, which blur my vision. I also have sun glare spots, even with sunglasses, so I have to use my hands to shade my eyes. I look like I am crying and saluting all the time! Kleenex and eye drops are my constant companions! I hate to think that this is my future. Hoping the eyelid surgery might help. I have a lot of white showing, eyes a little, not a lot bulgy. Certainly noticeable.Anesthesia-I originally wanted to be awake, cause I talked to a guy in Chicago who had severe TED, and he had the awake eye muscle surgery on both eyes, and had immediate relief from all double vision. But this doc specializes in that.
When I talked to three surgeons in Seattle, two would reluctantly consent to do it, but only one eye at a time. which would prolong everything. And they much preferred that the patient be asleep, for any move during the surgery could be damaging.
The other doc said no, he would not do this surgery with patient awake, it hurt too much.
I then moved into your camp, deciding that it does sound, and probably is, dreadful, and gave me maximum heebie jeebie-ness.
So I will have a general, be asleep, have both eyes done.
I saw the eye measuring person this morning. She said my eyes were a little worse, crossing more! The doc will see the report tomorrow. Surgery scheduled next week 9/22! I hate to think that I am still in the hot or active phase. IT was the conclusion that I was in the cold, or inactive phase, and my eyes had finally stopped being attacked and changing! Don’t know it will concern him to cancel the surgery or not. Tune in tomorrow, I will write.It really does make sense to have the order of OD, muscle surgery and eyelid retraction last. After the eyes have settled from the muscle surgery, they can make a much better decision about the eyelid surgery. Of course I want it all done yesterday,but the eyelid guy said that he wanted to wait as much as two months, preferably three months, after the muscle surgery, before he operated.
Of course, I am assuming and hoping that the FIRST SURGERY for the eye muscles will correct most of the double vision. He said I should be able to look up at least 70 degrees with no double vision, and that sideways double vision should improve some. BUT I know people who have had two or three strabismus surgeries until their double vision was finally corrected!
Sure hope it not you, not me. What a though!
I will write with update tomorrow. Sure hope this goes through with no problems!in reply to: Possible remission signs on ATD treatment #1064069I have been under the the impression (from several statements by endos that there is not much documented evidence from Thyroid antibodies lab to base any conclusions on treatment, or length of time, or course of the disease process, either in hyperthyroidism or TED. The evidence based guidelines are simply not there. Can you comment on this, Ski?
shirleyHI Sandy, I just wrote a very long and very detailed post about strabismus issues, but it did not show up on the thread. I think it went about the same time as Ski’s. It took so long to write, that I am going to hope it shows up in a few minutes. If it is truly lost, I will write another one this evening. Need to take a break, get over the disappointment that it is not there.
Shirleyin reply to: endo reducing synthroid again #1064087Hi Susan, it sounds like you have seen both your endo and your eye doc, both of whom are familiar with Graves’ eye issues.
Do you have a further eye appointment? The fact that they used the term "hot phase" can indicate that you may have TED, or thyroid eye disease. Or, it may not. It depends on whether you continue to have eye changes that are bothering you. This is a big subject. Although I do have TED, and have had a lot of experience with the course of TED, which is generally referred to as having a hot phase and a cold phase, I am reluctant to talk much about it until you learn more from your doctors about your eyes. You may just have reddened eyes, and need to use eye drops for a while, and that may be the end of it. Very good idea to keep track of how your eyes are doing. I look forward to more news from you in the future.
Shirleyin reply to: Remission? What do you think? #1064164Hi Christina, I was looking through your first post. Want to make a comment which might be helpful to you relating to PVC’s.
They are very common in people. Most everyone can have an occasional run of PVC’s. Were you told something a lot different that what I just wrote? From my experience working in a hospital, and listening to a lot of hearts, what I have learned is they are not something to worry about. A large percentages of the population has "benign PVCs" at one time or another.
However, if a person has significant cardiac disease, or a prior heart attack, they are certainly part of a good cardiac workup if they are seen on EKG strip. Perhaps what I am writing is a good springboard for you to consult with your doctor who has done the workup for PVC’s. A person may have a run of PVC’s sometime, then wear an EKG moniter for days and days, and not one will be seen. I am writing this because I think you might be very reassured by the doc if you had a discussion about PVC’s, and maybe you can take them off things to worry about. Please feel free to respond, for I am not sure if I am accurately interpreting your thoughts.
Just wondering. when this whole Graves’ thing began, had you decided to choose ATD’s? I am assuming so. As you have read on the other posts, we all chose different options, for our own personal reasons and/or beliefs. So what you chose is the right thing for you. Having said that, as you gather more information in the months ahead, you always have the opportunity to take at RAI or surgery. It usually turns out that people are happy with their choices. I chose surgery, could not imagine the other two choices for me, and others have felt the same way about my choice.
YOu are doing a great job with your process. I would like to agree with mamabear, kids are flexible, resiliant, they love you, and they will be fine.
I hope everything goes smoothly for you, again, mamabear’s advice, plus all the other good emails, to get your labs, moniter your symptoms, keep your doctor informed, and really check about any new meds you decide to add.
shirleyin reply to: Any feed back on NMD’s? #1064112Glad you are checking it all out with your endo. Can’t find anything at all about lodum. Are you having separate liver issues?
there is a simple group of lab tests which your doctor can order if needed. THey are commonly referred to as "LFT’s" ie liver function tests. The endo will probably do them if you are on an ATD.in reply to: ANA test results came back positive #1064094Try to learn as much as you can when you go to the doctor again. I am presuming he ordered that test, with some related tests, prompted by some symptoms you have. I am sure if anyone can relate to this with the same situation, you will probably hear from them. I can’t think of much more to say right now, other than I am glad you are seeing him again soon to discuss your health and the labs.
Shirley -
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