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in reply to: Empathetic employer #1170660
That is really great! I cannot say the same about my employer through the years. From my own observations of co-workers when they had health issues, plus myself with the onset of TED, there was little empathy and understanding, in a work environment where one would expect a generous amount of both!
In a hospital! so glad about your wonderful work experience.
shirleyAre you referring to renal tubular acidosis? (RTA)
Hi, I’d like to chime in, welcome you to this fine website. I’m in the “either you have Graves’ or you don’t” camp. I second all that has been said. Do keep good track of your heart rate. I’d like to know, how rapid is rapid? And anxiety goes along with being hyper, that is for sure.
One of the common themes of all of us is that we need (and deserve to) have a doctor who understands Graves’, and understands US! Not one who is distant. Your symptoms are equally as important as the labs. From your post, I understand that you have been doing some reading, and that you probably have read some of the classic symptoms of Graves’? For me, I was hot all the time, unbearably so, cause I was like a revving engine all the time, with a very fast heart rate, super hungry, had a tremor when I held my hand out in front of me.
Has the endo given you instructions to call him if you are concerned about anything? Is there a follow up appointment, and follow up labs scheduled?Here’s a great idea I suggest to everyone. Sign a medical release of information form, asking that all labs, tests and visits, be sent to you for your own personal medical file. And that goes for all docs, the rest of your life, and your husband, too.
I sure am sorry that your husband has had a sudden change of health, of course that is super stressful and scary. Is he improving? You have a lot on your plate, but you have a whole bunch of new friend on this site. So write your heart out, it is fine!!!
ShirleyJules, I sure am sorry that you ended up with an allergy to MMI.
ANd I hate Graves’ as much as you do (and all of us!) I hope you have moved on to treatment and to be “like you were” with Graves. I did not check your other posts to check that out, though.In my experience, most hospitals have single rooms now. Of course I am sure there are still double rooms, I am not sure if any “wards” are left in this country.
When people are on an ADT, they have additional labs, especially at the beginning, to check liver function, and the other lab is a CBC, (cell blood count) which gives information about red and white blood cells.
The complication of liver and/or decreased white blood cells, and increased chance for infection are very rare.I guess what I am trying to say, is that it is not a “given” that we have lowered immunity to fight infection, simply because we are on an ATD.
Sarah, I think if you check with your doctor, she is checking this lab. I don’t want you to think that you have yet another problem with decreased immunity, when this is probably not an issue for you.There are several people on this site who have been on ATD’s for years and years for it was their choice of treatment for their Graves’.
Sarah, I am very impressed with the doc you are seeing! Tell her that she has compliments all over the place from me! Good for you for telling her that you would like to stay with her. And she will feel much more confident managing your care, now that she does not have to worry about you digging in your heels and not wanting to go to the hospital. She’s concerned, caring and competent! THAT’s what you (and all of us) deserve. Not always what happens, though.
You have come such a long way in your understanding of your health. Yay, you!
Regarding going to the ER, I imagine it is inferred by her, but not stated, that if your heart rate goes up, up, up, you definitely should go to the ER. I don’t think it will, with the increase in propanolol.
I am so sorry about the blisters. They really impact your life! I like the idea of aloe vera/cortisone combination. If the cortisone “stings,” and it might, use the aloe by itself. I speak from my own experience, for I had a boatload of radiation when I had breast cancer, and my skin was an open sore/blister. The aloe was soothing. I think the “tincture of time” (I love this phrase!) is on your side with your blisters. Watch for any signs of infection in the areas.Yep, I remember the tremors. Don’t like’em.
I am sitting in the kitchen making a killer meal I just fixed-a squash/granny smith apple bisque! Really good homemade garlic bread, a great salad and a glass of red wine. Yum. Then income taxes to mess up the evening.
Shirleyin reply to: New Dr. Tomorrow, What to ask? #1170586Hi Kari,
What are the indications for you taking B12 injections? Are you also taking iron infusions? Maybe you mentioned it and i missed it. My impression is that generally, we are find with B12, with no reason to check it, unless there are indications to do so. Sometimes vegans have a deficiency, but pretty much a good balanced diet seems to work well.
Otherwise, it sounds like your doc decreasing your thyroid supplement is a good step.
*What is your heart rate now? I am assuming you know that tachycardia definition is a rapid heart rate. Generally speaking, a normal heart rate is 80-100, with reason to wonder if someone is running 100 all the time.
ShirleySarah, she will not be angry with you. Not at all. If anything, she is worried about you, I think. Here is a helpful hint to know for the rest of your life when you get blood draws and lab work done. Unless it is fasting, which is rare, DRINK,DRINK AND DRINK! Then your vascular bed (basically your veins) will be nice and hydrated and easy to find and easy to draw blood from. I have poked people for most of my working life,and this is the thing that has helped people a lot. (Except for surgery of course. And those guidelines are changing now, too.)
If your labs in in the morning, all the more reason to drink, for we have been basically fasting all night. That is why we call it breakfast, meaning breaking the fast. Interesting, huh?
Of course you are having one of those nightS! That itching can drive you crazy. I am so sorry. You have a REAL allergy to the leads, not just a sensitivity. YOu might try a benedryl tab, too. I am a patient like you, but most people know that benedryl can help itching.
If she has been increasing your ATD’s, it may not help your BP that much, maybe she will increase your beta blocker. How’s your heart rate?
Sure look forward to hearing from you tomorrow!
Try to relax, have a cup of calming tea, and I hope you get some sleep
Shirleyin reply to: Teenager/Graves Disease/Orbital Decompression #1170571Yes, that is a good sign! Lots of people are very satisfied with their choices. I do think it is a very good idea for you to talk to more than one oculofacial surgeon before you choose one. They have different ways of doing OD’s and it is dependent on where they trained, and your eyes. But it is not a sign that either one is wrong. It just makes it more confusing, unless you understand how this happens.
Here’s a thought for you about Graves’ and TED. You may have been misinformed about the relationship of Graves’ and TED.1. Graves’ is different that TED. It has different antibodies. Graves’ has thryoid antibodies which make the thyroid gland go whacko, and produce too much thyroid. And you have learned a lot about that.
2. Generally speaking, a very small percentage of Graves’ people develop TED in varying severity. As you know, it can range from scratchy eyes to lots of problems in a severe case.
3. TED, however, is like a DIFFERENT autoimmune disease. It has its’ own antibodies, which are very fond of attacking the muscles of the eye. So, while it does not make sense to aggressively elect eye surgeries if a person has uncontrolled Graves’ (cause you are really sick ,and that needs to be dealt with first) The pathway for treating TED, is to wait until the eyes stop changing, getting worse, and are pretty stable. Because many of the eye surgeries are dependent on eye measurements, it makes sense not to do them when our eyes are changing. You wait until they stop, or the inactive or cold phase.
Put another way, addressing what you were told, a Graves patient who has NO thyroid, either by RAI or thyroidectomy, can still develop TED at any time.
It took many decades for my TED to happen.So, as usual, this is what I have learned as a patient, and from my docs and from books, and they are all consistent. These are great question for you to as the surgeon you talk to, or your endo.
**Thanks for you comments about saran. I really appreciate them.
It seems that your eyes have gotten better! How wonderful that you don’t need to bother with all the night stuff anymore.
I wish you the best of the best as you meet doctors and decide what to do. And, do you have someone to listen with you when you go to appointments? Do you have someone to take care of you and spoil you if you have your surgeries?
Shirleyin reply to: Teenager/Graves Disease/Orbital Decompression #1170569Alsha,
YOu ask excellent questions! I am engrossed in doing income tax, plus I am tired. so you get the very short version tonight, with more elaboration tomorrow sometime.1. I did not have any increased double vision after my OD. But I had been having double vision looking every way but down! I would have been happy if the whole world was on the floor, including all the people I was talking to.
After the surgery, though, I was unable to close my upper eyelid all the the way. That is when I began taping my eye. Not sure why it happened.Just for a small bit of information, OD’s vary a lot, depending on your eyes and where the swollen muscles are, and where the orbital fat might be. If you do any reading about it, or talk to a surgeon about it, they may talk about one wall, two wall or three wall OD’s. Basically, they are making room for you eye to go back in.
I had really severe TED. I needed the OD to relieve pressure on my optic nerve. My doctors explained to me that the Hertel measurement with that metal thing that they use to measure the protrusion of eyes, is pretty unreliable. I can believe that, for one doc put the things on the inside of my eye, the other one on the outside of the bone. One of the surgeons told me that the best way to measure bulgy eyes is to tip my head way back and take a photograph.
Strabismus surgery for double vision was a miracle.
My eyes were not super protruding, but my eyelids were retracted, the upper ones too high, the lower ones too low.
Then I had upper eyelid surgery, to lower my upper lids. That was very successful.
The last two surgeries I had were on my lower eyelids, to raise them, with a graft from my mouth. this procedure has the best results. But in my case,
neither graft was successful, my lids are still way too low, and after the right eye was done, I have not been able to shut my right eye completely.
Remember, I have had a super severe case of TED. Very, very few people do.
I am definitely an exception.So-that is the NOT-short version. Once I started, I kept going. do write with more questions.
Now-my question to you is about Saran Wrap. How did you do it? How keep it on your eyes? I’d like to know as much as possible about that.There are many people on this site who have had great experiences with all their surgeries. I am the ONLY one I know of, I think who had grafts from the mouth to the lower eyelids.
You have every reason to know that you are going to be fine again, and look good. I think it would be helpful for you to take someone with you to appointments to take notes, and help you remember questions. That’s what I do. Also, I think there are other teens on this site. Use the search engine, type “teenager” see what you get.
Good night now.
Shirleyin reply to: Just Wondering #1170640I would DEFINITELY get the T3 and T4 along with TSH. Kimberly, I am having a mind block. Is it free T3 T4 or total? Forgot/
shirleyin reply to: Teenager/Graves Disease/Orbital Decompression #1170567I think you have plenty of time to have an OD, recover from it, then have strabismus surgery IF YOU NEED IT. If you have a little double vision and it is not impacting you life, and you are happy with what you have, then don’t have the strabismus surgery. It seems very radical to take off a year. Most of the people who march through TED with surgeries, have full time jobs and many have little kids, and some have both! Not everyone does have eyelid surgery, you would need to heal from the OD’s decide on strabismus yes or now, and if you had eyelid stuff done, it would be last.
I think the idea of taking a year off is a lot dependent on how your feel about it, how much you could get done this summer before you go to school in the fall. I am sure your college apps. are in, and you will be hearing in April?
I know you don’t have enough info from docs right now to know how much time to plan for, but I can tell you that if you are in school, it would be too challenging to have OD’s. If after the OD’s, double vision is a problem, studying for school would be challenging anyway. I totally understand about all the social implications of all this.
The things that might/might not change, are light sensitivity and dry eyes.
Our tear composition changes, and it is not as effective as it once was.
I am a violinist, too, and I know exactly what you mean. STaring at music, reading, using the computer, I always blink a lot less, then my eyes get super uncomfortable.
I am sort of just writing “out loud.” Looking at the pros and cons, which are hard to determine, not knowing the extent of your surgeries.
From my own experience, I’d say 3 weeks recovery (complete) for each OD, 2 2 weeks for strabismus ( they do both eyes at once.) And 1 /12 week for
eyelids.
****I just got moisture goggles! How in the heck do you keep them on all night? Do you like them, are they helpful? I have been taping my eyes at night, then trying onyx goggles. I find the little thing that connects the two sides is too long, with no way to shorten it.
Thanks, Shirleyin reply to: Mild TED to normal? #1170642LOTS of people have minimal eye involvement, then it goes away. Many.
I am not one of them, as you see. You will know if they are getting worse. Some people have red and itchy eyes, some are bothered by the light. Then all of it just goes away. i am sure you will hear this from the facilitators as well.
Let’s just assume you have mild TED and it will not get worse. Like most people.
ShirleyOh Sarah, I am so darn sorry about the EKG leads. Frequently, when a person has a quick EKG, the sticky things are not on long enough for you or anyone else to realize there was a sensitivity or allergy. Darn, I am sorry. Benedryl ointment might help you with the itching. You did not need what the technician said to you. It would have been much nicer if you had received some compassion about the skin issue. You probably won’t see that person again, and it is not worth the energy to pursue teaching him/her a small lesson in caring and understanding. Sometimes these folks assume that you are an old hat all all this stuff. Ok, enough of that.
I’d like to suggest to you that if you do go to the hospital, you can tell people (or show them!) of your allergy. There are non allergenic sticky pads.
And, they can put them in a slightly different place, probably.Your flight. that is a good idea, for your doc to ask you if you really FELT LIKE scrambling all over airports, and dealing with the stress and uncertainty that air travel can bring. Better later, when you feel good and are well.
When you go back on Friday, the rest of the labs will be back, and maybe a preliminary reading on your HOlter. If she is still interested in admitting you, after your Friday visit, think of it this way. You will be safe (as opposed to deciding to go to an ER over the weekend, which guarantees a long wait, being seen by someone who has not seen you before, and possibly a decision to admit you, and if it is like most hospitals, you will sit forever in the ER while they hunt for a bed. Weekends are not a favored time to have things run smoothly. Planned admissions are much better. If you need to go.
Certainly do ask her why she wants to admit you, why she is concerned.
The more you understand, the more you “get it,” the less anxious you will be. Remember, you really feel like crap, in addition to having a rapid heart rate.
We want you to get better as fast as you can, (nothing is fast with Graves’, though I gotta say) and not be home if you really should not be there.Having said that, I don’t know the distances of anything, or car arrangement and all that stuff, but it might be a good idea for you to show up at the doctor’ office with stuff for an overnight stay, if that would make your life simpler. TAke your computer, toothbrush, books, etc. Now, having said all this, maybe you won’t have to be admitted. It is entirely possible your meds will have kicked in given these couple more days. IF your heart rate is 160 ir so, I think you should not be at home. Keep track of it now and then now that your Holter is gone (thank goodness.)
After all I have said above, no no and NO you are not weird by not wanting to go the the hospital. You are super normal.
For the welts, sometimes cold feels good, and calms them down. Itching as as bad as pain, it is just a different kind.
Keep writing! I had had a lot of help from this board. One of these days, you will be writing to help someone else-and you’ll be great!
ShirleyYour doctor sounds very competent and super nice. I am happy for you. My thought is the same as yours. I am sorry about the timing, but probably you should stay home, finish the 24 hour Holter. Those things take a few days to read, for they have reams and reams of paper to carefully read.
I do agree that you may have a good chance to get a credit for your ticket. Do get the letter from your doc. The airlines are charging for calls now, I think. YOu can explore this online, but you may need to speak to someone.
I am really sorry about the travel plans. But I do believe staying home is the right decision. You might not sleep as well tonight, the Holter is kind of a pain, but prop pillows, and you’ll do fine, hope you do get a good night of sleep!
So glad you are getting good care. It is probably a good use of your inheritance.
Shirleyin reply to: Teenager/Graves Disease/Orbital Decompression #1170565Hi Aisha,
Gosh, I am sorry that have been burdened with this at such a young age.
I can identify with every eye symptom you have. It’s not fun, that is for sure.I had an orbital decompression which was very successful for a couple of reasons. It relieved the pressure on my optic nerve (which I had) and my eye was definitely receded in my head. As you may know, the doc who does these procedures is an oculofacial surgeon. I suggest that you try to make an appointment (or get a referral) by asking around for one who is familiar with TED and this surgery. As Kimberly said, I documented my post op experience extensively on this site when I had mine. In summary, there was minimal pain, and the key to an optimal recovery is to keep your head elevated for around a week after the procedure, and have someone bring cold packs for you to apply to your face on a regular basis. Both these things minimize and/or prevent any swelling and bruising. I was up for a short walk the next day, with someone with me. If you have this appointment, you will learn that there is some risk of double vision as a result of the surgery. But I did not have that happen. I ALREADY had significant double vision, which was making me crazy, though. I had the strabismus surgery on my eye muscles to correct that a couple months later.
I think that eye involvement really impacts our lives. It seems that your thoughts about getting this all taken care of before college is a good idea.
Do write again. These procedures should all be covered by insurance, for they are MEDICAL, not cosmetic procedures for people with TED.Shirley
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