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in reply to: Accepting Graves #1172968
Hi Tomas – I’m so sorry about this latest development.
We can’t tell you for sure what is/isn’t Graves’ related, but I *have* on occasion heard similar stories from other spouses and significant others. Some of them have shared their experiences on this board.I can only hope that time — and proper treatment for your girlfriend — will bring you a positive outcome.
Please take care.
in reply to: RAI or Surgery? #1172996Hi kararoot – Yes, definitely keep us posted. Hopefully, you will see things settle down, but in the meantime, do be aware of symptoms of potential liver complications, which can include fever, loss of appetite, nausea, vomiting, tiredness, itchiness, dark colored urine, or yellowing of the skin or eyes. Some resources also say that pain in the upper right side is a potential symptom as well. If you experience any of these, definitely let your doc’s office know right away.
Take care!
in reply to: Liver Function #1173034VanIsle Gal – As Alexis said, there is actually some controversy over this. The latest guidance from the American Thyroid Association and American Association of Clinical Endocrinologists actually recommends testing only when patients are symptomatic, rather than as a routine measure.
However, my own doc does order liver function tests every time I have a blood draw done…I guess she figures it’s better to err on the side of caution!
in reply to: RAI or Surgery? #1172994Hi Bobbi – There’s actually one specific liver function measure that the guidance from the ATA and AACE notes is not as much of a concern if thyroid hormone levels are dropping and other liver function tests are normalizing: “In patients with improving thyrotoxicosis, a rising alkaline phosphatase with normalization of other liver function does not indicate worsening hepatic toxicity.”
Potential liver issues, of course, should never be taken lightly…so that’s why I suggested that kararoot take the ATA/AACE guidance to a doctor for further discussion.
@catstuart7 – No worries, it’s just that any links/information posted on these boards needs to come from a *physician*-authored textbook, published, peer-reviewed medical journal, or a well-established medical organization (American Thyroid Association, American Association of Clinical Endocrinologists, National Institutes of Health, major universities, etc.).
The concern from our Board is that someone here could pick up information that did not specifically come from a physician resource, have a negative treatment outcome, and then come back to the GDATF saying it’s our fault. Our Board members put their names out in the public to lend credibility to our organization — but this also means that we operate under tighter guidelines than other similar boards might.
Take care!
in reply to: RAI or Surgery? #1172991Hello – You might check out the “Treatment Options” thread in the announcements section of the forum, which includes a link to the 2011 guidance on treatment of hyperthyroidism from the American Thyroid Association and American Association of Clinical Endocrinologists.
The document goes through the pros and cons of each treatment option, and the section on Anti-Thyroid Drugs also includes recommendations on dealing with side effects (retesting, stopping meds, switching drugs, etc.)
Hypethyroidism itself can affect liver function, so you might discuss this guidance document with your doc. (Or even get a second opinion if you don’t feel like your concerns are being taken seriously).
Take care!
in reply to: TSH Testing Only Once Stabilized Post RAI #1172148Hi all – just to clarify, this was the information that I posted on combination T3/T4 therapy:
Hi all – I prefer to not delete posts, if at all possible. However, please note that any therapies discussed on this board need to have credible, published research in an appropriate medical journal in order to support their use. Trying an unproven, alternative therapy without the supervision of a doctor (the author of the book mentioned has experience in the medical field, but is *not* a physician) can have very serious consequences.
Unlike some other Internet boards, which are basically free-for-all types of forums, this forum is hosted by the Graves’ Disease and Thyroid Foundation, which is managed by a Board of Directors. Our board’s policy is that any information shared via GDATF resources needs to come from “evidence-based medicine.” They do not want GDATF resources used to spread information on unproven therapies that could potentially cause harm.
Of course, in this case discussed in this thread, Rituximab had a poor outcome. But the administration of this drug was carefully managed by a physician and discontinued immediately when side effects occurred.
in reply to: Concentration/problemsolving/tests #1173027Hello – Having thyroid hormone levels that are out of balance can absolutely affect concentration. Hopefully, you have a doctor who is working with you to get your levels stabilized, which will make a huge difference.
In the meantime, you might find this bulletin on students and Graves’ to be helpful. It was more written for parents of young children, but it has some good study tips and also some info on the “Individuals With Disabilities Education Act”. Students who qualify can actually work with the school on an individualized plan that will help them. Plans can potentially include things like extra time for tests and assignments, which might be just what you need to get you over the “hump” until things start to stabilize.
(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).
http://gdatf.org/about/about-graves-disease/patient-education/students-graves/
Take care!
in reply to: new to the forum #1173025Hello and welcome to our forum. I’m sorry to hear you are struggling, but am glad that you found us…this forum is filled with other patients who truly “get” what you have been dealing with.
If you do a search for “weight” on this board, you will see that many patients struggle with weight issues after treatment. Unfortunately, there are no easy answers, but I’ve included some tips below from a nutritionist who presented at our 2009 conference in Charlotte.
1. Include breakfast daily within 2 hours of waking up.
2. Don’t go longer than 5 hours in between meals
3. Select “high volume” and “high fiber” foods such as fruits, veggies, and whole grains
4. Limit servings of healthy fats to 1 per day
5. Prioritize at LEAST 7 hours of sleep a nightOnce a doctor’s clearance is obtained to engage in activity, she also recommended 150 minutes per week of physical activity, plus strength training 2 times per week.
Even thought weight loss seems to be much more difficult for some patients (including me) than it is for the rest of the population, it’s important to continue fighting the good fight and make healthy, whole food choices.
Take care — and please keep us posted.
in reply to: Off the drugs but… #1173021Hello – It can certainly take some time to re-build muscle strength after an illness like Graves’, but it might be worth talking to your general practitioner about the fatigue and muscle weakness just to rule out any other possible issues.
It can also be helpful to get a hard copies of your latest labs. The “normal” range is fairly wide, and just because your levels are normal, does not mean they are *optimal* for you. Some patients find that they feel better at the middle of the range, some at the upper end, etc..
Take care!
in reply to: Riding the roller coaster #1172940Oops, sorry…just saw your comments about pretibial myxedema on another thread!
in reply to: TSH Testing Only Once Stabilized Post RAI #1172143Sending {{{hugs}}} your way, Jules…you are surely due for a run of *good* luck soon!
Have you talked to your doc about switching to the non color-coded dose of Synthroid and adjusting the number of tablets you are taking accordingly? I’ve heard of a few patients reacting specifically to the dye that creates the color-coding. Just a thought…
Take care!
in reply to: Hello and thank you #1172974Hello and welcome to the boards. I was also feeling pretty well when I was diagnosed in a routine. I’d had some symptoms (insomnia, tremors, sweating), but pretty much wrote them off to stress, too much caffeine, etc..
I know it’s frustrating to go from feeling well to being diagnosed with Graves’…but it’s actually a positive to catch the condition early and get started on treatment. We hear from patients who have gone undiagnosed for years…and they can end up in the ER with a thyroid storm and/or heart attack, or their muscles can become so weak that it’s difficult just to do daily activities like climbing a flight of stairs or brushing their hair.
This treatment *will* get you back on the path to good health…even though right now, it probably feels like a step backward.
Please check back and let us know how you are doing!
in reply to: Riding the roller coaster #1172939Hello – If the red rash is on your shins, you might visit a dermatologist to get this checked out. There is a condition called pretibial myxedema that a small number of Graves’ patients experience. It shows up as a red rash on the skin that has a somewhat “pitted” texture, like an orange peel. My understanding is that it’s more irritating than dangerous, although a dermatologist can help with some treatment options.
Some endos have connections with good ophthalmologists, so that would certainly be worth asking. A good source for connecting with eye doctors is http://www.asoprs.org – these are primarily surgeons, but if they can’t do an initial evaluation, they can at least refer you to someone who can.
Take care!
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