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in reply to: Flu Shots? #1181172
I got my flu shot. Am a believer. Never have had a physician discourage me from getting one.
ShirleyI have never read it, except once, when someone asked me to check it out. Your observations seem correct, and I feel that there was no validity to this site in any sense of the word. In my opinion, it is not worth reading. Their disclaimers and the content of the site, recommending medications and dosages, is worrisome.
But it seems you pretty much got this all figured out already, with your good common sense. I do not know of its’ readership one way or the other.
ShirleyI am happy to be a Warrior. I’m guessing I will never leave the forum! IT has been such a life saver for me. In the ideal world, I would LOVE to meet almost all of the wonderful new friends I’ve met on the forum. I’ve been lucky enough to meet a few in San Diego, so I have actually met (and had a great time with) Ski, Kimberly and Nancy Patterson. I was lucky enough to meet Amy in Seattle.
Truly, I have found TED a very traumatic event in my life. Graves, too, but remembering how hyper and crazy I was, so many years ago, is more of a blur in my memory, while TED has hit me hard, and is with me every waking (and sleeping, since I cannot close one eye at all when I sleep….)moment.
The people here are wonderful. I do not feel alone, though I know none of us would wish ANY of this on anyone. It has really been difficult, that is for darn sure. It means everything to a new person to find this site, and know that they are not alone. Everything.
Thank you so so much, Karen, Sue and ChristinaDe. Your comments mean so so so very much to me!
I sure wish we could all know each other, at least for a day. There is so much empathy, kindness, understanding, support, caring and good and factual information here.
As a complete change of subject, Seattle had thunder and lightning tonight, which we NEVER have, and as a native Iowa farm girl, I loved every moment and every flash of lightning, and every boom! Those early childhood memories are so strong.
Good night,
Shirleyin reply to: Puffy eyelids since july #1181046Hi Shakira7
You had some good comments from others, already.I think the high sodium content is very relevant. I think you will see improvement when it is less. Give it a couple weeks, though.
Pretty sure this will be the easy answer! I hope so.
Do write again.
Shirleyin reply to: Will be gone from forum for a while #1181075Oh, Amy.
I suspect I cannot be of any real help to you. But I am here if I can be, in any way at all This is really tough. I am so so sorry.
ShirleyHi Kimberly and Sue,
Although I absolutely understand the thinking behind #2, I think there is room to realize the implications of it, when this particular criteria, might eliminate a candidate for Warrior, when in every other aspect, this person (in this case, Sue, but could be me, also) had a lot to contribute to the forum. In other words, unintended consequences.I’ll try to send a PM to both of you for a bit more elaboration of what I am thinking about.
Shirley
in reply to: Biopsy this Monday. Completely overwhelmed…. #1180752Agree. You reported it, and most likely it is an isolated, or infrequent event.
ShirleyHi, I was irritable, fussy, ate like a pig, sleepless, ate all the time, kinda sorta knew my heart was beating faster, ……all this for about at LEAST 2 months, probably a couple more, when I went to a doc, and he said I was just stressed out, had a new baby, take it easy, crap like that.
And, as a comment to Nancy Patterson’s nice post. I am assuming you wore a Holtor monitor a long time ago. And either did not get good instructions, and/or decided for your own reasons that you thought you needed to cancel a day of work.
I want to clarify, for anyone who may be needing to wear a Holtor Monitor someday, that you can do anything and everything you want to do. I would not want anyone to refuse to wear it, thinking they would have to take a day or two off. Not correct.
Except shower or get the EKG leads or little recording wet.
I have worn them about six different times, four times when I was working a 10 hour shift as a very busy RN on a very busy floor.A Holter moniter is this:
They apply six EKG leads to your chest, with wires to a very small box which can hang on your pants like a cell phone, or you can have a small sling for it.
The purpose is to do a 24 or 48 hour constant measurement of your heart rate and your heart action. Very valuable information!As a matter of fact, I am wearing one right now!
Shirleyin reply to: Tweaking Meds – Bad Idea, I know #1180975You sure can! Ask, and push about this. THere should be a way you can sign up for electronic access to you chart. I had a lab drawn this morning at 8, and I already have looked up the results at 10am.
About the only thing that patients cannot access before they see the doc to discuss, are path reports, psych/mental health notes and sexually transmitted disease results.
Docs are historically used to having control over all information. Most docs in this current environment, welcome the patient being as informed as possible.
As an a side note this morning, one thing that was lacking in my health care was the fact that I go to two different medical institutions for health care, so I have to be the reporter from one to the other, until the glacially slow information is faxed, then sits in medical records for a couple of centuries until it can be scanned in the computer.
**All changed now as of this month. There is a new implementation with Obamacare, called Care Everywhere Authoritization Form, which means NOW, my primary care doc at Univ. of Washington, can access my cardiology records at Swedish.Thought this would interest everyone.
Shirleyin reply to: I walked a 5K today! #1180995AMY! SO happy for you! As I write this, I am thinking of Sue’s reply, and applying it to myself right now. She is so right! SOME DAYS IT WORKS, AND SOME DAYS IT DOESN’T!
I got hit with a heart thing, atrial fibrillation, a couple weeks ago. Most docs think it is directly related to my CHRONIC hyperthyroidism (labs only.) But my TSH has been .00something or other, for years. No matter WHAT I do. We reduced Synthroid from 150 mcg. all the way down to 77 mcg. The outcome of that was gastroparesis. For those who don’t know what that is, it is not fun. The stomach does not empty. So we went back, gradually to 125 mcg, and now are trying it again, with longer intervals between changes. I’m at 100 mcg right now.
OOPS! Sorry, I think I highjacked the thread without intending to. but the main point was, I could not DO ANYTHING for the past 3 weeks, until i was cardioverted at Swedish. Then still felt like crap. Could not get out of bed and stay out of bed. TODAY, I walked a few laps in the neighborhood, went to a wedding at a coffee shop, and I feel like a human.
Point is, it is hell to feel hyPO, it is hell to feel hyPER.
So some days, it is so so much better. But it is OK to have those other days, and not feel like we flunked the day. Cause the next day will be good. Or the next one, and soon most of them will be good, and now and then, all of them will be good!!!!
Shirleyin reply to: Is it or isn’t it? #1180890Agree with Ski and Raspberry! Go for it!
in reply to: Tweaking Meds – Bad Idea, I know #1180972HiSue,
I understand! The 17th is a whole week away! Here’s my suggestion.
1. Get the blood draw tomorrow.(as I recall, you do work in health care, don’t you??)
I can tell you for a fact that those results are REALLY ready the same day sometimes just a few hours later.
2. Get the results yourself.
3. Call the doc, or the voice who answers, and try at least to speak to an ARNP, RN or MA..NOT the receptionist.
Report your labs and your symptoms.
Ask for a return call, including a request for him/her to call in a lower RX.
The next dose down is 112 mcg. Is this a possible plan of action for you??Kinda hard to split pills, skip’em, stuff like that, cause then you lose your regimen, as you already know…..
Shirleyin reply to: Just off Methimazole & High Antibodies #1180964Well, I think there are three options available to you, and you are familiar with ATD’s. From what i have learned on this forum, maybe the issue for you here is that you need to continue on ATD’s.
From what I understand, remission is rare. And we always have Graves’
How do you feel? I realize you said you were feeling good, but ae you continuing to feel good as you are farther away from taking methimazole?
You might have been feeling good because you were on this ATD.Kimberly is quite knowledgable about continuing treatment of Graves’s with ATD’s.
Had you had an antibody test in the past, or is this the first one? My understand is that antibody levels can stay high for years, but I am not sure about this.
Shirleyin reply to: Recently Diagnosed with TED #1180958I would explore steroid eye drops very carefully. Generally, the time period of use is limited to two weeks. My son is a physician,and he is very reluctant and judicious about prescribing them. There are some very serious side effects from prolonged use. Increased ocular pressure and cataracts, to name the most concerning ones. (and they also work very well, which makes it a slippery slope for those of us who have red, bulging, irritated and uncomfortable eyes.)
Here’a short discussion to consider:
Elliot Myrowitz, M.D., Assistant Professor of Optometry, Wilmer Eye Institute, Johns Hopkins Medical School
Question:
‘What are steroid eyedrops, how do they work and what are the risks/benefits of using them?”Answer:” The steroid eye drops are interesting because we talked about inflammation being one of the components in dry eye syndrome. The gold standard in how they control inflammation in the eye are steroid eye drops. So you would think that we would use those quite a bit.
However, there are side effects from steroid eye drops and so they have to be used very carefully and on a short term basis. They do a great job of removing the inflammation and for short term help dry eye quite a bit. But it’s really weeks and months at the most. If you go longer, the side effects include causing the pressure of the eye to go up, which can cause glaucoma damage. And it has a cumulative effect so over a period of months it can even cause cataracts. So your eye doctors may use this but only for a short period of time to get things under control and then find a treatment plan that stabilizes things and manages it long term.”
ShirleyWith TED, very unfortunately, there is a lot about TED in the active phase,that is just “riding it out.” You will hear the usual palliative things,and there is not much else to do. Preservative free eye drops, sun glasses, visor if there is sun glare. I found hot wash clothes more soothing than cold. Anything cold hurt my eyes. Hot/warm wash clothes gave temporary relief for 2-5 minutes, and at that stage, I’d take anything.
I have found that people don’t notice my eyes as much when I wear glasses especially glasses that seem interesting and distinctive. (and that are large enough to accomodate my prisms and other corrections.) I hate TED.
in reply to: No sleep driving me insane! #1180929YAAAAAY!!!! Makes ALL the difference in our world. Sleep deprivation totally sucks and is terrible and awful.
Shirley -
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