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in reply to: Good Article! #1178296
Now that is an article worth keeping. Thank you so much for posting.
in reply to: New Endo…Maybe not #1178291I have been researching this pretty extensively lately and yes, you have a right to a second opinion. And it also turns out, doctors have the right to not be that second opinion. At my academic hospital, most of the endos do not do the second opinion thing since they have far more patients that want them as the primary than they have slots in their calendars.
It might just be that Grave’s patients are really being left in the dust. Of the 23 endos at my hospital, only two consider themselves specialists in Grave’s disease. And only one was willing to be my second opinion. I was asked at my last meeting if I was switching permanently. There was a sense that if not, they would no longer have time in their schedule for me.
I had every intention of switching so this question was not a burden.
Does your area have a shortage of Endos?
*susan*
Tomorrow is week 3. Three weeks since they removed my thyroid. The bandages are now completely off. Took some patience to pull them off carefully and gently, but it really was time. Underneath there is some puffiness and some redness from the irritation of pulling off the adhesive. The real surprise is the incision. What incision? My goodness this guy was GOOD. The incision is just a faint line across the far bottom of my neck. I am going to guess that within 6 months, I won’t be able to find it.
The pathology report is back and as expected, no sign of cancer. Dr. Surgeon says I can do my follow up by phone if I want. Since I see no signs of infection in the incision and my thyroid didn’t warrant any further treatment, I think I will take him up on this offer and free up a day.
*susan*
in reply to: Liver enzymes #1178197After 16 days on the generic Tapizole, my liver enzymes were dangerously elevated. Last week’s blood test finally show them back to normal. So it took my body 3 1/2 months to recover from 16 days of medication.
Hope this helps.
in reply to: Uncaring husband(have to share) #1178115Horrifying…. We are the same age and married at the same age. Funny how differently we were taught. My mother made me promise to always maintain my own credit, ensure that I always had skills for work, and a bank account that only had my name so I could leave anytime. My father taught me three things: how to use a drill, make eggs, and do my taxes. He really wanted to teach a boy-child but there wasn’t one available. He thought having my own money was overkill. I listened to my mother.
I am just babbling. None of this is helpful to you. Just don’t know what to say and so I babble. We are here if you need us, of course. Take advantage if you can think of someway we can help you in a positive way.
*susan*
Well, this is very upsetting. I hate TED. HATE HATE HATE! Is there any chance at all that your eyes are responding to spring pollens, etc? The pollens seem to trigger a more acute response in my eyes, but perhaps to a lesser extent.
::grasping at straws::
in reply to: Another newbie question #1178191I responded immediately to the methi-crap. By day 12 I was in the normal ranges for all my numbers. But by day 16, my liver was shutting down so I wasn’t able to use this drug effectively. My body has done this before… it responds extremely quickly to any and all drugs. And as a bonus measure, I get all the side effects, especially the ones that are listed as > 1%. [All the researchers at my hospital want me in their studies. NOT a good reason to be known.]
From my perspective, the fact that your body is slowly adjusting seems like a good thing. It is certainly what my doctors had said would happen as a matter of course and indicates a more ‘normal’ response to outside influences.
in reply to: Just curious about RAI #1177960what causes cancer?
10. Crap Shoot
in reply to: Uncaring husband(have to share) #1178096No words that can help. This story just makes me weep for you. So sorry that this was yesterday’s reality. Take care of yourself.
*susan*in reply to: Questions about RAI and TED #1177819I chose surgery as well. I was not a good candidate for RAI since I already have eye involvement. Since surgery, my eyes are improving with each day. I am only two weeks post-surgery so I don’t know all of the implications yet of course.
My surgeon, who only operates on thyroids, adrenal and pituitary, says it is rare these days to have a patient who is having surgery due to Graves, but it was far more common years ago.
*susan*
in reply to: Questions about RAI and TED #1177814Mom,
So hard to know what the answers are. So little knowledge compared to a lot of other diseases. You will find the best answer for you.
*susan*
in reply to: Questions about RAI and TED #1177812I think it is possible to fixate on the smoking thing too much. Eye disease presents in many people who have never smoked, and in some cases it appears that RAI is contra-indicated. My sister had RAI before these studies were completed and never smoked. Her eyes have continued to worsen over the last ten years even though her thyroid levels are considered to be normal. There is no way to know if her eyes have worsened due to the RAI or just because.
In my opinion, and I am not a doctor, there is more that the medical community DOESN’T know about Graves’ and thyroids and hormones, than what they do. But we just have to make our choices based on what is known now. 20/20 hindsight doesn’t help us treat our disease.
*susan*
in reply to: Fluorescent lights #1177907I was just discussing this with Endo#3 yesterday. Since the TT, my eyes have been much better except when I am visiting clients in office buildings or doctors in hospitals.
I have been attributing the eye dryness at these places with the quality of the air, not the lighting.
Another thing to consider when the dryness “strikes.”
in reply to: Tell the Truth…. #1177877My sister was diagnosed with Graves in 2004-ish. Like me, she was unable to take the Tapizole [liver problems after 6 months] and did the Radioactive Iodine. She lives a full life. She has a partner and overall is fairly happy. She hates her eyes and did have some eyelid surgery in 2005. Her doctors think it might be time for the more aggressive surgeries, but she isn’t ready at all for that.
If you asked her, Graves doesn’t define her life in any meaningful way.
No tips. I have been hanging with the same person for over 30 yrs and can’t imagine what it would take to find companionship in today’s world.
*susan*
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