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in reply to: What to ask surgeon re thyroidectomy? #1169958
Hi Rebecca, it is so nice to hear that you are moving out to your own flat, moving forward, and definitely much, much better and happier than when you wrote your very first post.
I have two thoughts.
1. Because you have reservations, you can consider canceling the RAI, and/ or postponing it indefinitely. The choice will still be there.
2. i know you are interested in evidence based information, not crap on the internet. Have you explore the appropriate sites for learning the information you say you have learned? I’m referring to the following paragraph in your post.I appreciate there are risks and benefits with something serious like cancer but I’ve been reading taht RAI is taken up by cells other than the thyroid (breast tissue, the brain etc), and people report hair loss, skin loss, gut issues, serious allergy issues, immune problems, loss of taste, tiredness, and on going problems.
What/where were you reading this? Valid, accurate and evidence based?
The only other thought I have is that I know three people in similar situations as yours, and they had throidectomies, all with small tumors, and none had RAI. I will check with the one person, see exactly what her experience was, for it was about 20 years ago, she is in her late 40’s now. But all of this is anecdotal, as I am sure you realize.
Do write again.
Shirleyin reply to: Is it still Graves after RAI? #1171013Well, you can ask an endocrinologist, but i have to disagree with your doctor daughter. But there is a nice review of it in an old classic text, Cecil’s medicine.
We have Graves’ the rest of our life. My son is a doctor, too. He has learned A LOT about Graves’ and TED since my experiences with both of them.
Shirleyin reply to: mini update & question #1170794Hi Laree, I looked up a couple references, cause I had not heard of it. I include one in this post.
I am very happy that you are feeling better. But consider that the methiamazole was simply doing its’ “work” in your thinking.It is synthesized from salt,then sugar is added.
http://www.livestrong.com/article/226434-what-is-nat-mur-what-are-the-side-effects/Regarding how you feel, you might be feeling good because the MMI is “working.” As Kimberly indicated, remission is possible. But you won’t know if you are in remission until you are not taking any meds at all for a while.
Your labs could be ok cause you are on the MMI.
Just my two cents (:
Good luck to you, do write again.
ShirleyYes, Johlego, it is unbearable. I am so so sorry. There is a fine line with all of this, when parties involved, get to a point of no return. Of course I hope that there will be a magic turnaround with your mom, but you and you dad have been dealt some very difficult cards, and I guess I am here to say that the outcome of this is not known. Some things are very difficult to forgive and recover from, especially in the near term.
Meanwhile, your dad has a job, you have your school responsibilities, and I am hoping that you are able to maintain a semblance of a normal life as a 16 year old kid. You definitely have too much information, which has to be very painful for you.
Speaking as a parent who also had a spouse who acted crazy like your mom-but it was my husband,and my three teenage kids 12,14,18, all dealt with what you are dealing with now. The good thing is that we are all right side up, very happy, and yes, we did divorce. Years later, my kids say that it was better for them and for me. But at the time, all of us felt that our world had come to an end, and it would never be ok again. Well, it was.
Shirleyin reply to: Life changes and Graves’ #1171001Hi, it absolutely does NOT adjust itself anymore. We and our docs need to do that. You are right, the first thing to do is get a labs, including the three labs that have been mentioned here several times. TSH, T3 and T4. Since your last labs were ok in December, and you now have more symptoms, i think that is the first step, to see your endo, preferably AFTER you get the labs, so you have something to discuss. Your symptoms, as you know and as you stated, do sound hyper again.
And, congratulations on your accomplishments, your graduation and your new job. Can you get labs pretty darn soon? I hate to have you feel they way you do if there is an “answer.” A reminder, that if your dose is changed, it will take a while for you to feel changes and improvements, and you need to wait at least 2 months before another lab. As someone who has taken Synthroid for many years, I have a thyroid panel at least every year, more if I notice changes in myself.
Do write again!
Shirleyin reply to: Orbital Decompression Surgery Question #1170969Hi Katherine, I went to a neuro-opthalmologist the entire time I had active TED.
Did this doc you went to to-was the visual fields test you had the one with the rather sophisticated machine, where you have one eye covered, and then look at the blinking lights? It is called the Humphrey visual fields machine.
That is what you need, I think to really evaluate your eyes. I strongly encourage you to go to a neuro-opthalmologist. I think that the exams they do are far reaching, compared to what you receive from a regular opthalmologist. TED is a whole different deal.I also went to the pediatric surgeon who eventually did my strabismus surgery,(My diplopia was severe)and had more tests that were entirely different. They prescribed prisms, which helped many others on this site immensely with their double vision. It did not help me,but now, over 2 years later, after all the procedures you see that I had at the bottom of my post, I do have prisms built in my glasses, plus they are shaded a bit. I am still very photophobic.
I totally understand the extent of studying you are doing in your RN program. Ihave been an RN, (BSN and MSN also) for many years. It is a demanding life,t hat is for sure, to try to study and deal with tED at the same time. I also taught on the clinical side. I’m over 50…and 60 and 70! I retired in 2008 from my last (and easiest job) working per diem in an ACS, as a preop and post op nurse. Had to stop because of the diplopia, and looking at the moniters. Not compatible!
Hmm. Re the eye you use all the time, if I were you i certainly would be concerned, and I hope you can pursue this. It certainly could be overuse, but that is scary. One part of the answer might be to use prisms, be evaluated for that. They have ones that you can stick on your regular glasses for a trial.
The office who prescribed that, was the peds eye doc.Do keep writing. this site is absolutely marvelous, i could not agree more. So glad you have a compassionate eye doc for TED. having said that, I spent my life with two docs with specialties i mentioned above. And I did have optic neuropathy. I did have greying of vision, decreased recognition of the color red, AND occasional blindness in one eye, but it was transitory, not as consistent as yours. My heart goes out to you, and I feel confident that you are going to end up on the bright side of this darn TEd. But plant in your mind that you will be having surgical procedures to help you. REad some of my posts about my OD, plus other stuff.
Shirleyin reply to: Thyroidectomy or Rai that is the question? #1170959Hi Lilly,
I am on my way to bed, but wanted to say that there are so many good posts on this subject. If you use the search engine, try typing in both choices.
One of the variables is a personal choice, and what you feel most comfortable with, having said that, a surgeon who “does” thyroidectomies on a regular basis, at least 50 a year is what you want. I chose surgery, cause it seemed the quickest way to get it done, and begin on thyroid replacement, and get my life back. RAI was new, then, but I was not at all interested in it. There are just as many people who chose RAI and were very happy with their choice. The one thing that needs to be considered as you consider RAI, is if you have any eye involvement, or TED. I am sure you’ll hear from rAI people. Factors to consider are pregnancy, for you have to wait at least 6 months and/or till you are very stable and not hyper to go that direction. (I just quickly scanned your other emails, seems I remember you are 51, so of course that is not a consideration for you! Ok, I am falling asleep!
If you are up, scan other posts, it is very helpful, use the search engine. You’ll hear from others in the next day or two!
Shirleyin reply to: Hi New member looking for some help #1170919Hi, welcome to the board. I am a patient, just like you, but I do have some thoughts, and I have learned a lot by having TED. It sounds like you had an orbital decompression to relieve pressure on your optic nerve. That leads me to think that the eye doc you were seeing might have been a neuro opthalmologist? Or did another eye doc find that you had optic nerve atrophy. I am assuming you had pressure on your optic nerve, which is what that is, and had the surgery by an oculofacial surgeon to save your vision in that eye.
Fill me in on the details I might have missed or stated in error.Graves’ and thyroid eye disease (TED) are two separate autoimmune diseases.
I do not think you can plan on your muscles returning to normal. the diesase process of TED is that antibodies affect the eye muscles, and makes them stiff, and unable to contract and expand, which causes the double vision.
Assuming you are in the cold, or inactive phase of TED, there is surgery that is very easy to have to correct your double vision.
Regarding the cloudy vision and the squint, it seems that you have ended up with a disinterested doctor. It is possible that you do have side effects from the OD. Double vision is a complication and side effect. But double vision is also a part of TED for lots of us.
Do write again. It sounds to me like you need to find a very competent and compassionate eye doc familiar with TEd. You are not pleased with the guy you have. It is far too common for docs to withdraw if there are complications after a surgery. This also happened to me.YOu WILL get better. Is your Graves’ under control now? Once you have the right treatment for your eyes, I am sure you can be helped.
Shirleyin reply to: Waiting for Affirmative Diagnosis #1170902Welcome to the site, Barb.
It sounds like you already have an established relationship with a good and conscientious doc in your care. That is “money in the bank” as you travel down this road. 140 bpm is very rapid, and I am glad you are on a beta blocker. Do write again.
Speaking in a general way, it is very helpful to established your own medical file at home, with copies of your labs, any procedures and your visits for care.
You’ll need to sign a Medical Release of Information form, requesting that they be sent to your home. I find this very helpful.
ShirleyBrief note. Good plan. It is essential that she has this care-in order for her to become her old self, before all this has happened to her. I say this, assuming Graves’ is the problem here. I hope for the best for you and your dad, your mom too.
ShirleyHi.
You are a very mature guy, amazingly able to be objective while looking at the strain, tension and chaos that you are living in right now. I am so so sorry that this is what you are experiencing at home, when you have a life at school, and studying to do. Hard to bring friends home during this upheaval in your life.Do you have any idea at all if she is seeing an endocrinologist at this time?
I am just casting about for ideas for you to try. Do I understand that your mom has decided to toss out the fact that she is sick with a thyroid issue?
Is there anyone whowhen I was hyper, (I was very young, very hyper with a new baby and a husband in med school.) I really was pretty crazy, never sleeping, always hot, eating a ton of food, losing weight, with a very fast pulse. But when they told me what I had, I could hardly wait to get better. I felt like a crazy person, thought I might be, and I think others thought so too. It was wonderful news that there was a reason. But your mom does not seem to be in that place right now. Since you do have some influence with her, what would happen if you told her she was not herself at all, that you are worried sick about her, and generally very scared about everything. Are YOU able to ask her what the doctor says? Kimberly pretty much addressed this, but she should be seen regularly, and the doc should be asking her how she is feeling, what she is like, and doing labs. After 2 1/2 months, I would expect her to be feeling much better, if she is on an anti thyroid drug. a reason for this not to be happening, is that she has needed an increase in the dose.
Elf gave you a very realistic post, too. I am glad you are writing to us, and you sure do need to be able to do that. But, I am not sure what to tell you to do or say to make things better. As you said, you are the only one who has any leverage with your mom at this time, so maybe it will be very good reality therapy for her to realize that you will be living with your dad. I say this, because you have said that is your plan.
I find myself so concerned about you. Hoping you have good support and friends, but as I say this, I know that they won’t understand, and in many ways, this is the best place to discuss this stuff.
I wonder what your mom means by it will “work out.” Tell you dad to write if he wants to. There is another guy posting right now, you dad might find I some solace in reading his posts. I think it has “wife wants a divorce” in the subject line.
All for now
ShirleyHi, I am on my to class, and gone much of the day today. Wanted to say hi, and tell you that you’ll be getting some responses today, for sure. I am SO sorry that you are experiencing this nightmare.
Shirleyin reply to: Graves Opthalmopathy #1072656Hello. I have had severe TED, as you can see from the litany of procedures I have had since 2009. And I know I had symptoms in 2008, but then I was raking out beaucoup bucks every three months for new glasses with a new RX. Which did not help at all.
To all of you in this thread for whom it might be helpful, but especially gemini52, I suggest that you use any resource you can to find a good neuro ophthalmologist, make an appointment and then you will know much more about your situation, and how you MIGHT be able to help it a little bit. If you have had these symptoms for a couple years, I hope your situation might mean that you might be moving toward the end of the active phase. (Read Ski’s and Kimberly’s comments a few posts down.) By taking a good history from you, in addition to some other tests, you and the doc may be able to determine if you are still in the active or hot phase, or the inactive or cold phase.
I see that you are established with an eye doc, and are seeing this doc regularly, so it is possible that is enough supervision, if this doc is familiar with Graves’, and the course it takes. Since your orbital CT is normal, or as docs are fond of saying, “unremarkable,” and you do not have double vision issues, you may be one of the lucky ones (even though you are not feeling very lucky right now) who is having a mild case of TED, and maybe you are in the inactive phase. If this were the case, it is very appropriate for you to explore surgical correction for your eyelids. And, it is very common to be photophobic (light sensitive.) I can’t go anywhere without a couple pairs of sun glasses and a visor.
**BUT, when you see a surgeon about your eyelids, be clear that you have TED, for these procedures are not elective cosmetic procedures which you have to pay for yourself, but they are medically indicated procedures, r/t (related to) TED. My insurance, and most people’s insurance, covers them.Do write again with more questions. You are perfectly normal to feel that way about your eyes. welcome to the club. I’m so glad you do not have double vision issues on top of your proptosis. That is great, and even better news if you and your docs can decide if you have reached the inactive phase.
Shirley
And, welcome to this site, it is wonderful.in reply to: New with GD, lots of questions? Pills or RAI #1170816To rdial,
Have you considered seeing another surgeon, consulting with that person about the pros and cons for you in your situation? Probably a good idea for you to see a neuro opthalmologist for a baseline workup on your vision. There is definitely evidence of the possibility of the onset of TED thyroid eye disease after RAI, and you have had it three times.I am so sorry that you feel so crappy, and of course your work situation matters a lot. Maybe you need a new endo, too? Are they compassionate are they being vigilant about your symptoms, and trying to help you?
Shirleyin reply to: 19 y/o daughter hypo six months after RAI #1170802To shegant.
I sure am sorry about your daughter having to be saddled with Graves’ as she begins another milestone of her life. She has so much on her plate. It is easy for her to relate to her situation. One thought I had (on a practical level) is for her to drop a class if the quarter has just begun, and she is able to do that. It’s another way for her to have some control. It is an executive decision she could make right now. I have no idea is this is applicable for her.Re Graves’s now for her. One variable about being hypo that I did not see in your email, is if she is having labs on a regular basis. Has she begun taking thyroid replacement hormone yet? I KNOW what it is like to be hypo. I spent all last year trying to reduce my Synthroid dose.
My situation is different. A couple years ago, I felt fine on my dose, but my labs indicated I am hyper. But that has been the same situation for over 12 years. So, because of the concern of the endo about a slight increase of cardiac risk, I agreed to reduce Synthroid from 125mcg down to 77mcg, very slowly, in a time period of approximately 15 months. The point of this is, that I became hyPO. It was terrible.
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HyPO symptoms are every bit as depressing, devastating, life-changing, as hyPER symptoms.I realize she had RAI about six months ago, and have no idea if her labs are representing decreasing thyroid hormone in her system, but I am assuminso, because she is hyPO. I am hoping she is having labs, has notified her endo how she feels, with her hyPO symptoms. I’d like to think that the endo might increase her thyroid hormone, with regular labs, and that she might notice a positive difference in how she feels.
I sure am sorry she is having this rough spot at this time in her life. The weight issue, plus fatigue is so demoralizing.
Do write again.
Shirley (mom of grown kids, one of whom was hypo as a freshman.) -
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