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in reply to: Showing Signs of TED — Very Scared #1184850
Hello and welcome – it is very common for Graves’ patients to have *some* eye involvement, and a small number will progress to needing surgical or other interventions.
In most cases, there is an active phase for the eye disease and then some improvement – although not 100%
You might consider asking for a referral to an ophthalmologist who is familiar with Graves’ or checking out asoprs.org to find a doctor near you, just to get a baseline done.
Avoiding smoking (and exposure to second-hand smoke) is critical right now, as smoking increases the risk. Also, if you are contemplating RAI, it’s important to be aware that this can increase the risk of worsening eye issues. (A course of steroid therapy can reduce this risk to near zero – but, of course, the pros and cons of that option need to be considered seriously). Finally, be sure to stay on top of your lab work as recommended by your doctor, as being either hyper or hypo can increase the risk of worsening thyroid eye disease.
Research out of Shiley Eye Institute at UC San Diego found that the appearance changes are even more challenging for patients than having specific vision issues like double vision. Hopefully, you have a good support system at home – and either way, this community is always a great spot for support and encouragement.
in reply to: RAI and weight gain #1184836Hello – Hopefully, others here who have had RAI will chime in, but I’ve personally had significant issues with weight gain after 7 years on methimazole followed by 1.5 years euthyroid with no meds, and now 1 year on replacement hormone.
This is an issue that I wish more doctors would look at. In fact, the new guidelines on treatment for hyperthyroidism mention weight gain in the section on children – but nothing for adults.
It’s certainly worth getting hard copies of your labs. The “normal” range is fairly wide, and this might help you determine if your levels are normal for YOU.
in reply to: GD with TED #1184533Hello – There have been some studies indicating a possible benefit to thyroidectomy in terms of TED outcomes, most recently out of University of Michigan Kellogg Eye Center.
However, for the studies I’ve seen that mapped out the actual antibody levels, the reduction in antibodies over the first year is similar for antithyroid drug therapy and surgery. The big difference is with RAI, where antibody levels tend to spike in the months following treatment.
All three treatment options have risks, including surgery. The risks of surgery can be reduced significantly – although not completely eliminated – if you use a high volume surgeon who does a lot of thyroidectomies each year. If you do have a high-volume surgeon in your area, a consultation would be helpful to determine if this is a good option for you.
Bumping…Dr. Douglas is LIVE on Facebook right now!
If you miss the discussion, a copy will be archived for future viewing.
Many folks do disappear once thyroid levels are stabilized or once eye surgeries are complete. So the GDATF is VERY grateful to those who keep checking back to share their experiences and offer support to those who are new to the site!
😎in reply to: 2nd dose of RAI #1184826Hello – Hopefully, others will chime in here, but if you’ve had one failed RAI, you still have all three treatment options available to you, including a second dose of RAI as well as staying on the Tapazole or pursuing surgery.
The current practice is to give a “fully ablative dose” of RAI – meaning enough to fully destroy thyroid function. Doctors used to try and find the “goldilocks dose” – one that would normalize thyroid function and not leave you hypo. However, this approach is no longer recommended because of the high likelihood that hyperthyroidism would recur and need additional treatment.
If you are feeling well on the small dose of Tapazole, don’t let anyone pressure you into a permanent decision – obviously, your doctor might have reasons for his/her recommendation, but this is ultimately your choice!
Bumping to the top…
If you are in the Los Angeles area, don’t miss this free seminar on Graves’ disease and thyroid eye disease!
And if you or a loved one has been impacted by thyroid cancer, be sure to check out ThyCa’s 19th Annual International Thyroid Cancer Survivors’ Conference.
GDATF Registration:
https://www.eventbrite.com/e/graves-disease-thyroid-eye-disease-free-los-angeles-patient-education-seminar-tickets-28240360679ThyCa Conference Registration:
http://thyca.org/support/conferences/(Note on links: if you click directly on the above links, 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).
Huge thanks to Liz1967, emmtee, and Sue for providing excellent info while I was working an event out of town.
Although some patients assume that “natural” or “alternative” therapies are risk-free, this is not the case. If an unproven therapy fails to adequately control hyperthyroidism, there is a *significant* risk of bone/muscle wasting, heart problems, and a potentially fatal complication called thyroid storm.
For those who are interested, the National Center for Complementary & Integrative Health has a nice web site that looks at alternative therapies from a science-based perspective: https://nccih.nih.gov/
(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).
in reply to: Is it all due to graves? #1184766Yikes – No wonder you have been having symptoms! Hopefully, you have a follow up scheduled in a few weeks to make sure that is the right dose adjustment for you.
The following link is all I have for Mayo; surely, there is some avenue to get in there, even if your doctor won’t call them:
http://www.mayoclinic.org/appointments
I saw an eye specialist a few years ago at the Arizona location a few years ago, and this was not a requirement for me.
Hope that you start feeling better soon!
(Note on links: if you click directly on the above 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).
Hello and welcome! We are fellow patients, not doctors, but I am concerned that your doctor is recommending jumping right into surgery for your eye bulging.
This page from the International Thyroid Eye Disease Society does a nice job of explaining the course of thyroid eye disease:
http://thyroideyedisease.org/the-course-of-ted/
Unless you are having vision issues due to compression of the optic nerve, surgeons do not want to operate on someone with thyroid eye disease until the disease is fully stabilized (not getting either better or worse). For eye bulging, the more common procedure is an orbital decompression, and then they will do surgery on the lids if that is still needed.
The punctal plugs and cauterization *can* be used for dry eye, but honestly, I would seek a second opinion, as you might not have a doc who is really familiar with Graves’ disease. The American Society of Ophthalmic, Plastic, and Reconstructive Surgery has a search engine where you can locate a doctor near you:
http://www.asoprs.org/custom/directory/?pageid=3657&showTitle=1
As thyroid eye disease runs its course, it *is* possible for some improvement to occur, although it is difficult to predict how much. It’s especially important to avoid smoking and second-hand smoke, as smoking is a known risk factor for worsening TED.
(Note on links: if you click directly on the above links, 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).
SueAndHerZoo wrote:However, even if the pharmacy DOES change manufacturers, what can I do about it? If that’s what they are providing that particular month I don’t imagine I have much choice, that’s why I was asking about switching to Synthroid to avoid future inconsistencies.You are right in that I don’t think a pharmacy would let you request a specific manufacturer. However, if you find out there *is* a change in manufacturer, most doctors will recommend getting follow up labs done a few weeks after starting with the new manufacturer to see if the dose needs to be tweaked. And if your pharmacy is constantly hopping all over the place with manufacturers, yes, that would be a good reason to switch over to a brand name!
in reply to: tightness in chest normal? #1184786Hello – We are fellow patients here, not docs, so we’re not able to give medical advice. This is obviously causing you concern, so I would recommend contacting your primary care doctor or endo. If the offices are closed, they should have an on call number, or you can visit an urgent care center.
Hello – Agree with Liz1967 that a change in manufacturer would be something to research. Some states require the pharmacist to tell you if the manufacturer changes, while others do not. I would also let your pharmacist know about this issue just so he/she can be on the alert in case other patients report a similar issue.
With my pharmacy, the manufacturer is noted via a 3-letter code somewhere on the label.
Hope that you can get some relief soon!
P.S. Another thought – absorption would be another issue to consider, as I recall that you have a co-existing condition. A visit to that doc might also be worth your while. Tirosint comes in a gel capsule, which is supposed to provide better absorption. The downside is that a lot of insurers aren’t yet providing coverage for this med.
in reply to: Carb Intolerance #1180955Hi Shirely – Harpy was a different poster who was here on behalf of a significant other, but we are always happy to see former members return to the forum!
@Antony – As I mentioned in the other thread, I would suggest removing your e-mail address from your signature in order to keep spammers from getting that info, but it’s certainly your call as to whether you want to leave it in.in reply to: New to Grave’s Disease/Please Help #1184763mjessie1985 wrote:I’m applying for evening jobs right now because I feel like crap in the evenings. I do much better when I’m busy, doing something, it makes me not feel sad or depressed or anxious, I know I’m opposite from some people on that but hopefully getting an evening job will help me feel better and get through this.Hello – Just a thought…is there something that you can use to fill your evenings that isn’t quite as permanent (or stressful) as job? If you feel poorly in the evening, getting a job *might* take care of the need you are trying to fill, but then on the other hand, it could make you end up feeling worse!
Maybe you could try volunteering just one night per week? If it really does make you feel better, then you could expand your commitment from there.
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