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in reply to: Just an update. #1183314
Hi Barbra, Sue/zoo!
I also think about Boomer now and then! I think I’ll send PM to him, se how his world is. Also nice to hear from AZ Graves guy now and then!
Barbra, did you get an immunization for shingles? Just wondering. I think it is still recommended for us, even though you have had shingles.
IT is so nice to hear both of you are doing well! About darn time, huh?
I agree that reading older posts is really a GOOD idea! I have done the same thing with my own posts, and it helps me be grateful where what can do now, and that I am on the other end of this mess, even with the deficits I have with tapping my eye closed at night. I would prefer to take more Sythroid, I feel better with more, but now I have cardiac issues, and my goal is to stay in the normal range with thyroid labs.
Shirley
in reply to: Methimazole trigger Graves eye? #1183409Hi All,
I am (again) super tired tonight. So just a word or two about my experience.Now it is morning, I got a good sleep, so the world is better today.
My story:
I was a 22 year old student, married to a student, we had a 10 month old baby boy. I had Graves, but did not know it yet. An overview of the last 60 years (gulp) follows:
Graves’ diagnosis at age 22, little more history below. Put on Tapezol, which is the same drug as methimazole. As soon as it was safe, and my thyroid labs were in a safe range, I had a subtotal thyroidectomy. Because they left a tiny piece of thyroid gland on each side, I was euthyroid for 30 years or so. Then I had hypo symptoms, and began Synthroid.
My anxiety, weight loss, voracious appetite, tremors, inability to sleep and very fast heart rate, were all attributed to stress. I was very irritable, probably the one person I was nice to, was my little baby boy. Certainly my husband could attest that I was impossible to live with! All of this was attributed to being a new mother, breast feeding, and “doing to much.” Easy to believe in one way, but I knew something else was wrong, so went to student health on a break from working in the hospital. My heart rate was around 160! And when I held out my arms in front of me, the tremor was quite impressive! At that time, there were not further tests to do-no TSI, and the other ones I cannot think of now.
I developed TED 50 years later! I had a severe case, it lasted a long time. I had multiple procedures, which I think show up at the end of my post.
I have to tape one eye closed at night.To Mforsberg21-It sounds like you are FINALLY on the right track. YOU HAVE BEEN THROUGH SO MUCH, and I am so sorry. If you want to talk to other men who have had this experience, I think there are a few on this forum.
Now you are with good people. I sure am glad. The one thing about doing investigate research, is for you to go to academic sites, to work with eye docs who know about TED, to endo who understand Graves’s. Lots of whackos out there!
Scanders has just had recent experiences with TED, glad she posted.
So, this is my story, or at least some of it!
Shirleyin reply to: Old (ongoing) question: WHEN to take T4 #1183349Sue, I can’t find any serious drug interactions for Synthroid. And I am sure you have checked this out with the meds you take…….? So maybe this is your answer. Check it out, then,,,,,,,forgetaboutit! And take’em all at once?
Shirleyin reply to: Old (ongoing) question: WHEN to take T4 #1183345Hi Raspberry and Sue!
Here is my experience, not at all my advice….Well, I am NOT saying I am doing it correctly, but i am doing this relatively consistently.
I wrestled with the same questions. So I decided to try be consistent, and honor my foibles at the same time.I get up around 7, take my pills, Synthroid and all the other ones, in my case some cardiac meds and Arimidex (hx a fairly advanced breast cancer, Stage 3B, 14 years ago) THEN I march right out to the kitchen, make coffee, and enjoy it. The time varies between 15-30 minutes between the two things. I don’t eat right then because I am not hungry when I first get up. Gotta have coffee. Sometimes with milk, sometimes black.
I do not have to bolt out of the house to go to work now, for I am retired.
I suppose I could take it before I went to bed, too. I’m pretty much done eating after 7.
My levels have not been fluctuating. No explanation for that.
Shirley
in reply to: Third relapse #1183497Hi. It is so nice to hear from you!
My first thought about your last thought, is to take it one thing at a time. Unless I missed in an earlier post, it sounds that eyes are not an issue for you.
If the are an issue now, do write about that, and we can take it from there. No need at all for you to worry or think about radioactive iodine treatment. Just because a doctor recommends something, that does not mean that is the only option. Your other option, in your case, is a thyroidectomy. Yes, there are some evidence based studies that show a slight increased incidence of TED after RAI. There is also a slight incidence of TED with or after Graves. It comes in many different kinds, mild, moderate and severe. If you read the posts on this site, you will find that many of us chose the surgical option. For all kinds of different reasons. But people have also chosen RAI.You have had an typical, and all too frequent, misdiagnosis of Graves’ in 2008. I am so sorry about that!
I presume you are in UK, cause you were on carbimazole. Ok, so you weren’t compliant, now you know. Good idea now for the docs to have told you to stop it because of those labs. do write again after your appointment tomorrow.
You probably did feel well, because you WERE on carbimazole, so not that surprising. But you did have hype signs, which you know, of tacky and weight loss.
It certainly is a possibility that mindfulness meditation might help with anxiety, but you still have the physiological issue of Graves’. And you pretty much, I think, know treatment options. Clearly, ATD, or certainly the one you are taking, is not an option for you. I am not sure what the UK suggests in instances like this, or if they move on to the other two options of RAI or surgery.
YOU have the time it takes to make informed decisions. It will be nice to chat on the site, adding this to what your docs recommend. Docs are not very patient sometimes about discussion pros and cons, or explaining labs. But we will slug through this with you!
Shirley
in reply to: I`d value your opinions! #1183461Agree, Joy.
I had Graves’ when I was 22. It was VERY difficult. Equally difficult to have TED in my 70’s.
Shirleyin reply to: Alpha Thalassemia and Thyroid Eye Disease #1183475Yep. re #1. You do need a definitive diagnosis. In retrospect, you certainly had Graves’ symptoms. BUT you are miserable.
And money is a limiting factor. Do you have any insurance at all, or are the co=pays still an issue if you have it?
Hi Ken,
You can have TED with NO abnormal labs. The strabismus surgery for double vision is a walk in the park compared to an OD. As an example of TED, I developed TED almost FIFTY YEARS after I had Graves’. My labs are normal, but I have had a thyroidectomy, and have been on Synthroid (thyroid replacement for years.)The best doc to evaluate you for TED, is a neuro-ophthalmologist. Any way you can find one? I am wondering if you physically went to the doc’s office, pled your case, if you might get a break financially. These docs have LONG waits for getting an appointment.
2. Do you feel that the DV occurred only after the OD? Or did you have it before? Sorry, I am tired, and may have missed that.
Yes, I had DV, and I found that prisms (more money) helped, and so did patching one eye, which I did when I tried to drive. Then I had an accident, all my fault, and tried to take public transportation and carpool without driving for a while. All of this sucks big time.3. Yes, my other eye is very bulgy. It will not close at night. I have to tape it closed at night. Only tape in the world for that is called Mepitac. Great stuff, you have to order it online. I don’t care if my eyes look different, I just don’t want to subject myself to another OD. But I am much older than you. I understand.
In my opinion, radiotherapy is something to avoid, if only for the very large expense, for a treatment that is temporary. My neuro/op doc, my oculofacial surgeon, both do not use it in their practice. But that is my experience, and of course I am just another patient in the awful world of Graves/TED.
I think the biggest issue you have is finding the right docs so money is not wasted, and the financial issue itself.
I use many eye drops a day, and eye gel and lubricant at night.
I am wondering, because of your other diagnosis of alpha thalassemia, if those docs can help you with referrals and smooth the path for you, for you are definitely complicated!! Are you getting iron transfusions on a regular basis?
Shirley
Keep writing. This is a great site with great people. The best there is.
in reply to: help hives #1183469You have two holidays coming up! You have a legitimate issue, and you are miserable. All of this has been discouraging, demoralizing and defeating. I am so darn sorry.
You were NOT treat well at all by the PA. NOT at all. I would take a look at your posts, compile hour experiences in a letter to the clinic manager, and the doc. BUT I also understand you are stuck with them for now. If you have a primary care doc, I echo Kimberly’s suggest to try to see that today. NONE of this is simple, and you want to feel better. I am so darn sorry.
Shirleyin reply to: Finally–eye muscle surgery scheduled! #1183478It is sooooooo simple, and instantly gratifying, and much easier than an OD.
Single vision rocks!
ShirleySeems like you have most symptoms of being hypo. Big time.
I am unclear why they took you off Synthroid completely. You had an RAI, which pretty much destroyed the ability of your thyroid gland to make thyroid hormone.
My opinion, as another Graves’ person, is to refrain from eliminating gluten from your diet. Take one thing at a time. I am making an assumption that you have eaten food containing gluten all of your life, but have not had all this symptoms, including GI symptoms, all of your life. Seems much more likely to related to your Graves’/RAI roller coaster ride than gluten intolerance.
If you really want to remove gluten from your diet, a hard thing to do, with much less eating pleasure in my opinion, if it is not a compelling reason for doing this, wait until all Graves’ stuff is managed,and you are back to being you. This will happen! Really.
And, yes, I had ALL those symptoms when I was hypo. And I got that way when we tried to reduce my Synthroid.
Kimberly is so so good at explaining TSH, T3, T4, that I look forward to her response to your dilemma.
Shirleyin reply to: New member story… #1183240Hi twitchy,
I have been thinking about you a lot. How are things going for you now?
I am “just” another patient who has had Graves’s and TED, but here are my thoughts. It has been a while since you wrote. I am hoping you did continue to go to an endo, and that you have a more definitive answer. It is difficult to sort things out when there is an overlying anxiety disorder to deal with, too. And it could feasibly guide docs to waver in treatment of Graves’.1. Yes, you can exhibit hyper symptoms with a slightly suppressed TSH.
I have the same question Kimberly asked. What Graves’ tests are you referring to??2. I think it is very important for you to have an empathic endo who does not discount the way you feel. Continue with labs. This is just a thought, but perhaps if your labs (I am assuming TSH, T3 and T4) indicate slightly hyper, and you FEEL that way, perhaps taking an ATD for a few weeks, monitoring you very carefully, will give you the rest of the story. If you feel better,and the anxiety decreases, you may have Graves’. But this is definitely a medical decision with you and your endo working together. Are you taking propranolol for a rapid heart rate?
Looking forward to hearing from you.
Shirley
in reply to: Feeling fairly hopeless #1183289You are headed in the right direction. When you lose muscle mass that fast, if you have, it also returns that fast! Remember that. It is very hard to be objective about ANYTHING at the stage you are in.
The dog is easy, other other than if you are sleeping w the dog. If so, you will need to “abstain” for a few nights.
You can read about RAI, read from others on the forum who have had it, that is really helpful. You can read what others did about work. I think the big thing for you to know, is CLOSE contact, hugging, snuggling, etc.
I am hoping you can read the guidelines from your RAI folks ahead of time, call them today or tomorrow, ask them to send a printed copy, and or read them online.
The way I function, is that information is POWER, limbo is harder.
You are PROGRESSING, YOU WILL FEEL BETTER NOW YHAT YOU ARE BACK ON METHIMAZOLE. You have your own experience to rely on for this one!
Keep writing, we love to hear from you. Soon you will be reassuring others, that is what is so great about this site. And it is comprised of reasonable people, good resources. It’s been a lifesaver for me.
Shirley
in reply to: Medical Alert Bracelet #1183308Kimberly!
THAT is exciting news! Wow. Look forward to another report sometime.
I also have other medical issues, and my family is scattered, not always in the area. So that also makes a difference. I think the thing I worry most about, is taping the eye (the one that does not close)…. closed at night. One night of an open eye, would result in a corneal abrasion, lots of pain, or worse.
While on this subject, I would like to recommend the only tape to use for this, over eyelids and eyelashes, is:
Mepitape. I think that is the way it is spelled. Wonderful product.
ShirleyHi, just so you know, I was on Tapezole before my thyroidectomy. The big things checking labs, which your doc seems to be all on top of. I got pregnant about 5 months after my thyroidectomy. I presumed it would take longer, and was kinda stunned that the moment I decided to “try” I was pregnant (first baby ) I had included in “my” plan that I’d have a few more months to recover, get normal, less tired and all that.
Definitely have copies of labs. The T’s are super difficult to understand. and although I intellectually kinda “get it” I still as the docs every single time, “so what does this mean to me” in terms of my daily life. I suggest you begin with this,a nd also make notes by your T’s and what them mean, and if it is improving or not. This is all very new to you, and is also very complicated.
Shirley
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