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in reply to: EYELID SURGERY, ANYONE???? #1063195
Thanks, Carla! I really appreciate your writing about your experience. This doc says he does everything from inside the lids. I am still exploring. I am glad you are mostly happy with your result.
Shirleyin reply to: problems after OD surgery #1063178Hi, I had had OD surgery. The one thing that made ALL the difference in the swelling after the surgery, was to elevate the head of my bed. It made a big difference in a good way in my recovery, and diminishing the swelling. I think this will be very helpful, especially because it is worse in the morning. It is very discouraging to have this situation a couple months after the procedure, I sure am sorry. I know you are more stuck than usual with the doctor, because he is the one who did the surgery (I assume.) So it is more difficult to go to another doc for a second look. Re elevating the bed-First, I bought very cheap blocks at Bed Bath and Beyond, and it worked pretty well, but I wanted the head of the bed higher. So I got every old blanket and bedspread I could find, folded them in approx. 1/3rds,
and had OTHER people lift my heavy mattress and place the pile under my mattress. I sure do understand that your mom does not want to sleep with her head elevated the rest of her life, and also does not want that huge accumulation of fluid under her eye. How long has your mom been on the prednisone?Kimberly’s post pretty much described the course of TED, and it reflects my experience. I had double vision before and after the OD. It was life altering. Almost a year later, I had strabismus surgery (eye muscle adjustment) on both eyes.
My double vision was looking straight ahead and up, and my inferior muscles were the most affected, although the obliques in both eyes were also affected. The strabismus surgery was a couple months ago. It helped a LOT with looking straight ahead. I don’t have to tip my head waaaay back to see only one of something. I still have double vision when I look up, but it is a bit better. The eyelid doc wants to wait about four months after the muscle surgery, and then I will have eyelid surgery on upper (first) and lower lids. That will put my corneas at less risk, and I hope it might help my extreme photophobia (sensitivity to light) and having my eyes tear CONSTANTLY!
This is very tough thing to have. Tell your mom to write, or send a PM (private message) and I will respond, she is also welcome to call me anytime. It really helps a lot to talk to someone going through the same thing, especially if it is pretty severe, as mine seems to be.
Shirleyin reply to: Out of remission, what next? #1063216Hi Heather, ya, I was almost 100% sure it was atenolol. I think you said that you noticed no difference in your heart rate and palpitations after you began the atenolol? If this is still the case, give your doc a call, is possible the dose may need to be increased for a while, see what he says. I am so glad you have a good bunch of docs managing your care.
Shirleyin reply to: Are heart issues tied to thyroid disease #1063209Hi, I sure am sorry you are having to deal with this! I have not had this set of experiences, although I do have cardiac issues which are unrelated to hyperthyroidism. This site is pretty much limited to people’s experiences, and none of us are qualified to give medical advice,and I realize you are not asking that. But here are some of my thoughts.
It does seem that you are having very appropriate follow-up on your situation. Certainly there enough going on, combined with your tachycardia, your abnormal Holter, failing the stress test.
And you want to get a diagnosis and treatment. The unknowns are the most difficult to deal with. Ask the docs, or look up a reliable reference for the many possibilities that a high C-Reactive Protein and high cholesterol may indicate. It was very appropriate to do those labs, and I am sure you may have had additional labs. Pretty reasonable for them to think of hyperthyroidism, so glad you take along your labs to show them. Since you have not had them since July, have they drawn another thyroid panel, so they have a recent thyroid lab?But I do think you are getting good care. Everything you say about IST is right on-even the diagnosis of IST, and the term itself, is only about 20+ years old. After you have your chest CT, I suggest you meet with your cardiologist again, which i imagine he/she will want to do after further testing. Then, ask to have a second opinion. IST is kind of a new diagnosis when all things cardiac have been ruled out, but I don’t think you are there yet, are you? It seems that your docs are unsure at this time of what is going on with you. That is an unsettling feeling. A lot of things have to be ruled out, including supraventricular tachycardia, which may have been mentioned to you by your cardiologist.
In summary, I sure understand why you are worried and frustrated. It is wearing and stressful to have all these tests and appointments and not yet have an ANSWER! YOu can ask your cardiologist if there are long term cardiac implications after Graves’ and RAI, and maybe someone from this board will write if they have had this experience when all things endocrine and thyroid are normal, which is your situation.
I wish you the best, do keep writing.
Shirley Nelsenin reply to: Out of remission, what next? #1063213Hi Heather, I want to reflect what Bobbi said, that you still have the three treatment choices. People on the board have chosen ADT’s, surgery or RAI, generally for their own personal reasons. So I encourage you to re-visit the three options if you are inclined to do so. I am hoping you do hear from someone who has had the experience of recurring Graves’ after ADT treatment.
I would like you to check with your endocrinologist regarding your statement about being on a blood thinner. I am wondering if you have misunderstood the drug which you say is a low dose blood thinner. It is very common to be on a drug, usually atenolol, or related drug, to slow down your racing heart. Perhaps this is what you are referring to? If so, it is important for you to realize that you are not on a blood thinner, and even more important to know it if you are, and to ask the question. And, if the drug you are taking is not helping your racing heart, you should report it to your doctor, including your pulse rate taken throughout the day, plus a resting pulse rate.
I hope you write again. THis is a great website, with great people facilitating and equally great people writing with their experiences with Graves’.
Shirleyin reply to: question about medication #1063275Hi Jessica, how did your ultrasound go? I hope you checked with your docs, and am guessing that you found that it was fine to take your meds, but either way, it is now a week later, and I hope all of this is behind you. How are you feeling now? I surely understand that you don’t want to feel awful again, and equally glad the ADT’s are working, and that you feel better after being on them.
Shirleyin reply to: After Surgery #1063259Hello, and welcome to this great site. Have you used the search box at the top right hand side of the bulletin board?
It is very helpful, and I remember some relatively recent posts (I think last summer) describing how they did after their surgery.
I made the same decision you did, but my surgery was a long time ago, although my post op recovery was similar to the recent posts. Welcome to the world of "normal," regarding feeling apprehensive about your surgery. If they offer you something to relax when you are waiting to go to the OR, take it. It is a great drug. I have worked in the pre-op area in a hospital, plus I have had several surgeries, and it magically helps you forget that you are anxious.It is so typical of the surgical experience to not have the information of what it is really like at home in the immediate post op period. So you have found the right place to hear from others who have had the same experience.
Here’s my experience….. My neck was sore and stiff, primarily from the positioning during the surgery. It is kind of like when you ski hard on the first day of the season, and all your muscles tell you about it the next day. I found that my throat was a a bit sore, so I had food easy to eat that required less chewing action, for a few days. It is typical of any surgery to be surprised by how tired you are in the post op period. In the second week, I thought I felt just fine, but I tended to fade in the early afternoon, and be very interested in a short nap, or at least lying down for a few minutes. I went back to work (a strenuous job in a hospital as a RN on a med-surg floor) and that was the dumbest thing I did, for I was exhausted. If your life allows it, try to take advantages of that glorious time off, and stay home at least a month, even more if you have the sick leave. If I had it to do over again, I would take as much time as I could get, then use part of the sick leave for a nice vacation, or do projects that I never had time to do. Regarding the incision, I have to look to find it, and I have to point it out to anyone who wants to see it It is a non-issue for most people. In summary, you can eat lightly the day of surgery, if you want to, whatever seems good to you. You may not be very hungry. I had a five month old, and I definitely welcomed the help with him, plus having my mom cook meals and do the laundry. I pretty much was doing everything in a week, but I sure was tired. I am sure you will hear from others, I cannot recall the names for sure, but I think Cynthia and lch11 (probably wrong letters) both had recent surgeries. Type in "surgery" and or "thyroidectomy" in the search engine.
Oh yes, I did not feel hyper after the surgery, but there is a time that there might be too much hormone that has been stored, circulating around for a few weeks until that is used up. Write with more questions.
Shirleyin reply to: Hello Graves disease, I am Mullein #1063255Hi Mullein, welcome to this marvelous, reassuring and factual site. It really is so helpful to "know" others who actually understand this darn Graves’ disease.
I am so happy for you that your doc referred you to an endocrinologist. Even happier that you are on meds now, and experiencing some improvement in the crazy symptoms of hyperthyroidism.
I wish everyone on this site would read your post, for your comment about being on an ATD (anti thyroid drug) and its’ relationship to making informed decisions, is extremely helpful to anyone with Graves’. When we are hyper, we are HYPER, and it certainly is more challenging to thoughtfully absorb information, make decisions, in this state.There is a lot to learn, and there are decisions in the future that you will be making as you march through Graves’. It really is almost magical to feel the changes back to being your normal self as the ATD’s kick in. It sounds like you have a good endocrinologist, who is informed about Graves’, another big plus.
Do write again, tell everyone how things are going for you.
Shirleyin reply to: Graves, TED, throidectomy and steroids???? #1063265HI Rebecca, I would like to share my experience with Graves’ AND TED. I will probably rattle on too much, but take what you will that is helpful. Ski’s excellent and factual email will be a good reference for you to review as you hear my experience. You eye doc is right to say that a thyroidectomy is unrelated to TED.
As Ski said, they are two separate entities. As you see in her email, and reflected by what I am going to say, prednisone is unrelated to Grave’s. So let’s talk about TED (which I have now.) My experience has followed the 2+ years time period. Probably more, for I went to a very good eye doc who completely missed all classic symptoms of TED, continuing to prescribe yet another pair of super expensive glasses, with small corrections. Of course they did not "help." Including that unknown period of time I am close to three years. Finally, when objects were swimming in my vision, when my scalp, head and back muscles were in spasm,my eyes were red and scratchy, I still did not know what was wrong. But the eyes tearing all the time were driving me crazy. So I stepped in an unknown eye docs office to ask about my eyes, tearing. I saw him for 5 minutes, he told me I had Graves’, sent me for an orbital CT, 20 minutes later, I could see for myself the thick, bulging muscles of my eyes,primarily the inferior muscles, the ones that allow us to look straight ahead and up. I could NOT do that without seeing double. So I had been unconsciously adjusting to that to see one object, buy tilting my head further and further back. I was in the hot phase for sure. Because my vision was changing every darn day. He held up 2, the 3 fingers on one had, 5 on the other, saying that I could plan on this lasting 2-3 years. That I should also see a neuro-eye doc to check my vision.
OK, about prednisone. A very useful drug to be prudently given during the hot phase of TED. I had oral pred once (60mgm a day for a month, plus a slow taper) and IV steroids twice. There was VAST improvement in my symptoms. The purpose, though was to reduce the swelling in the eye socket, which in turn was pressing on my optic nerve. It definitely has its’ place in the hot phase. However, as I saw the color red less clearly, and my visual fields were decreasing (although I really did not realize it myself) my optic nerve was threatened so much that I had to have an orbital decompression in the active phase to save my vision. It is not typical to have an OD in the active phase for any reason but that reason. Feel feel to write to me to ask more ? about TED.
Re Graves’. I had the same experience as you did. I did not respond to ADT;s. I kept swinging back to hyper. I was kind of a nutcase. I just wanted the darn thing OUT. Felt happy about that. Had the surgery. Went well. You Need to find a surgeon who does them frequently. My surgery was a sub total, so I did not need thyroid replacement for many years. (Based on how I felt, plus labs.) Finally got a little hypo. Began Synthroid. Important to take as Ski said. I love Synthroid, Have a lot of confidence in it. I have a lab once a year, or if I am wondering if I need more or less. An important thing for all of us to remember when dealing with Graves’, that is easy to forget sometimes on this board, is that we can feel differently, for reasons other than GRAVES! A thing or each of use, plus our docs, to remember.
As an aside, I am using someone else’s computer, it is Thanksgiving here, am in Sun Valley where it is 22 below zero, an I lived in England for two years. Gotta go!in reply to: Concerns about Thyroid Storm #1063299Hi, it sounds like you are receiving very good care and preparation before your surgery. As Ski said, the incidence of thyroid storm is rare, but it is associated with uncontrolled HYPERthyroidism. YOurs is controlled, and you re taking the potassium drops pre-op. My experience was the same. If you want to ready about the post op experiences of people on this board, type in "surgery" or "thyroidectomy" in the search engine. There are some very helpful posts. Everyone has a different view on why they chose what they chose for managing Graves’. I was delighted with my choice of surgery. Glad you have gotten that far in your decision process, best wishes to you. Look forward to hearing from you again.
Shirleyin reply to: Chest pain but normal numbers #1063278Hi saumya,
I am reviewing what you said in your post just to get it clear in my head. So here goes.The symptoms you mentioned in your first sentence are definitely worrisome, and the advice to go to the ER was certainly good advice. Chest pain/heaviness and left arm pain/heaviness are definitely two of the classic symptoms of a heart attack, as I am sure you know. But the exams ruled out a P.embolism, heart attack and stroke. You’ve got the work-up from the ER, plus normal labs and normal thyroid studies. But you do have high BP and still experience chest pain.
I suggest that you continue to take and record your BP at different times of the day, but consistent times, so you have that info.
Do you think it is a good idea for you to have a new patient appointment with a cardiologist? That is one thought. As Bobbi suggested, make an appointment with your internist. Perhaps it makes more sense for you to have an appointment with your internist, who knows you, to discuss the chest pain and high BP.
If your are having elevated blood pressures, (like millions of Americans,) discuss with your internist anti-hypertensive meds for this finding. That’s a possibility. Ask if there are other related reasons for chest pain. Give him as much of your information as possible. For instance, is the chest pain associated with breathing? I imagine after he examines you and gathers your new information, he will probably order some further tests. And review your meds with him, but in the meantime, you can drop by a pharmacy to discuss them with a pharmacist.Regarding stress, if stress and anxiety are part of your world right now, that does increase blood pressure, as i am sure you already know. I wish you success in following through and getting some solutions.
Shirleyin reply to: Newly Diagnosed with No Insurance #1063289Hi Melissa, glad you found this wonderful and reliable site. My suggestions pretty much reflect part of what both Bobbi and Kimberly have said.
Here are my thoughts on the endo doc. I encourage you to keep that appointment with him/her. You are fortunate to have an appointment next week, that is a major miracle, for it a typical wait time for a new patient appointment with an endocrinologist can be two months or longer. And you have worked hard to get financial help for this appointment. As Bobbi noted, if you decide to follow up with an internist or a GP familiar with Graves’, that is certainly an option.
My thoughts:
1. You need to be seen. Keep the appointment. Being hyperthyroid without treatment has the potential for being very dangerous, especially if your resting pulse is racing all the time at 140 or higher. Plus, you feel like crap. Go with an open mind, with your thoughts on your symptoms and your history.
2. Regarding your friends’ comments about not liking the doc, well, I think you should go with an open mind, despite what they have told you. Your primary goal is to be seen, and begin treatment for your hyperthyroidism.
3. Regarding what you heard about him being fired. I would discount this information at this time. That is quite a proclamation to make about someone. It seems appropriate to have a I would not consider this a factor in keeping the appointment. Keep an open mind. Having worked in the health care field for 50 years or so, (or any work situation) it is wise to regard all rumors with a healthy index of suspicion.
If it is important for you to try to track down if this issue is valid, after your appointment, there are some avenues you can pursue to verify what your friends have told you.
4. Regarding work, since you took a voluntary separation from your job related to hyperthyroidism, I suggest that you do not look for another job right now, and for the same reason. Wait until you begin treatment for Graves’. so that you are operating from a position of strength, rather than weakness, in your search for work.I have some contacts in Wisconsin. Send a PM, and we can write/discuss this subject.
Bobbi has given excellent advice from her own experience dealing with medical costs.ALL issues are much more difficult when you have untreated Graves’.
People on this site often ask if they are crazy when they are hyper. I see a lot of responses reassuring them that they are not crazy.
Well, I can tell you for sure that when I was super hyper, I WAS kinda crazy, irritable, impatient, not always nice, and found things wrong with everything and everybody! It affected my work, my marriage and everyone around me! I hope you are having less of a hard time than my experience. But it does get better with treatment.Do write again.
Shirleyin reply to: Graves Eye Disease #1075509Hello Lynn, I don’t have time to reply in depth right now, but in the meantime, go to the search box, type in strabismus surgery. I had it two months ago, and have described it in other posts. It’s no big deal post op in my experience. Check it out, see what you find, then write with more questions.
Shirleyin reply to: Its a boy!! #1063338I am so happy for you! As I reflect on my three 5.5, 6, and 6.5 lb. babies, I truly cannot imagine pushing out a 10+ pounder! Maybe that means he will sleep longer periods of time even as a newborn?
So glad all is well, that you feel so good. I was toxic after my first baby, a crazy person until I had my thyroidectomy.
I wish you the best! Those first few months are very sleep-depriving, plus the other kids.
Thanks so much for writing!
Shirleyin reply to: Complete Thyroidectomy #1063362Try drinking tonic water. It has quinine in it. The standard drug for occassional leg and foot cramps for years has been quinine, but it is not available in the US anymore. But I found tonic water really helps.
Shirley -
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