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in reply to: Newly diagnosed and treatment options #1185306
Hello and welcome!
TT = Total thyroidectomy
If you have a specific topic of interest, you can use the “search posts” feature while you are logged in.
in reply to: Still fluctuating after all these years #1185415Hi Sue – I can’t recall if we’ve discussed this before, but have you talked to your doc about alternating doses? Sometimes the commercially available doses might not keep you in your sweet spot. For example, if 137 mcg is too high and 125 mcg is too low, your doctor might have you alternate doses.
Of course, this is a nightmare with insurance. It’s always something!
in reply to: Newly diagnosed, reaction to Methimazole #1185428Hello and welcome – You can use the “search posts” feature here to look for specific keywords (“RAI”, “PTU”, “Surgery” etc. and read experiences from community members.
You might also consider checking out our Facebook page and joining the group there, as that group tends to be more active than this one. From the main FB page, you will either see a “Groups” option along with “Events”, “Photos”, etc. – or it sometimes shows up as a blue “Visit Group” box.
https://www.facebook.com/GDATF/
A second opinion might be helpful, as this is an important decision, and all three options have both risks and benefits, depending on your individual situation. For example, if you want to pursue surgery, it’s important to have a surgeon who does a LOT of these procedures. If you are thinking about RAI and you have some eye involvement, you might want to check with an ophthalmologist about the risk of worsening eye disease.
Take care – and keep us posted!
in reply to: Allergic to PTU and Methimazole. #1185401Hello – While it’s preferable to do surgery with normal levels, the medical guidance from the American Thyroid Association notes that there are options including beta blockers, potassium iodide, and glucocorticoids. They also note that in this situation, BOTH the surgeon and the anesthesologist need to be experienced in dealing with patients whose levels are not under control.
in reply to: Newly diagnosed and treatment options #1185304@koala1963 – Hello and welcome…a good place to start is the patient site for the American Association of Endocrine Surgeons. If you scroll down to the bottom, there is an option to “Find an Experienced Surgeon Near You.”
in reply to: dealing with symptoms #1185390Hello and welcome – Have you talked to your doctor about beta blockers? They won’t treat your hyperthyroidism, but these drugs are sometimes prescribed to provide temporary relief from symptoms such as tremors and rapid heart rate. Beta Blockers can potentially worsen asthma and certain blood vessel conditions, so they aren’t prescribed for all patients…but this is at least worth a discussion with your doctor. Hopefully, others will chime in here as well.
in reply to: Allergic to PTU and Methimazole. #1185394Hives can be a reaction to anti-thyroid medications, but in other cases, the skin reaction is actually caused by the hyperthyroidism itself and will resolve once thyroid levels are stabilized.The latest medical guidance notes that for “minor” skin irritation with Antithyroid meds, you can keep taking the drug in conjunction with antihistamines. Ultimately, your doctor will need to make a judgment call as to whether or not your reaction is “minor”.
Wishing you all the best as you make this difficult decision!
in reply to: Graves Disease and neuropathy of feet #1062380@akshayv – I’ve deleted your two posts, as it appears that your purpose here is to promote a product. If you are an actual Graves’ patient, please feel free to jump in on a topic of interest and share your personal experience.
in reply to: The RAI decision #1185385Hello and welcome – Hopefully, others will chime in here, but if you did well on the meds before (levels were controlled, with no side effects), this option should be open to you following a relapse. In addition to meds and RAI, surgery would also be an option, although it’s important to ensure you have access to a “high-volume” surgeon. This is NOT a procedure that you want to have done by someone who only does one or two thyroidectomies per year!
in reply to: New to Graves and scared of PTU. #1185378Hello and welcome – Liver issues are not common, but this *is* an issue to be aware of, expecially since methimazole has a better track record than does PTU.
The good news is that of those who do experience liver issues, the vast majority recover quickly once the issue is identified and the meds are stopped. Potential signs & symptoms of liver issues can include fever, loss of appetite, nausea, vomiting, tiredness, itchiness, dark colored urine, or yellowing of the skin or eyes – so if you experience any of these call your doctor’s office ASAP for further guidance.
Hello and welcome – We are fellow patients here, not doctors, so we can’t make a diagnosis for you. (And I’ve removed the lab images to protect your personal information.)
I would definitely seek out an endocrinologist. Waits can sometimes be lengthy, but your primary care provider might be able to cut through the red tape with a referral – or if you can ask to be placed on the cancellation list, that can get you in more quickly.
An experienced ophthalmologist could also help you sort out the cause of the eye issues. It *is* possible to have thyroid eye disease with “normal” labs, but it would be good to have other potential issues ruled out.
Hello – I went the antithyroid meds route, so hopefully, others who have had RAI will chime in.
It can take 6-18 weeks for the RAI to do its work – and regular monitoring is needed – so you might need to get your insurance company to authorize some additional visits.
After treatment, you’ll want to contact your endo’s office ASAP for new labs if you feel hypO symptoms coming on. Every patient is different, but symptoms of hypOthyroidism can include fatigue, joint pain, unexplained weight gain, constipation, dry skin, cold intolerance, and slow pulse.
It’s really critical to catch hypothyroidism early post-RAI, so hopefully, the insurance company can cut you some slack. In a pinch, your primary care provider could fill in, but it’s good to have the additional expertise.
We have a fabulous program planned for our June 14-17 Patient & Family Conference in lovely San Diego! Still on the fence about attending? Here are two great reasons to register TODAY!
1. Seats are filling up quickly for the Patient Advisory Board meeting hosted by Horizon Pharma. Space is being offered on a first-come, first-served basis to registered attendees who have been impacted by thyroid eye disease.
2. Registrants as of June 4th will be included in the advance contact list. (An updated list with ALL attendees will be sent out after the conference, and you can opt out of being included in this list.)
So…are you in? Visit http://www.gdatf.org to register!
Update: The draft schedule is now available! Visit our home page at http://www.gdatf.org for details!
A few updates on the conference…it would be great to see some fellow forum members there!
***Single-Day registrations are now available! You can attend either on Friday or Saturday for $99. Registration includes patient materials and breakfast and lunch.
***Pediatric endocrinologist Dr. Thomas Kelly will be speaking on children and Graves’ disease – AND will host a breakout session with kids and parents!
***For those with financial need, scholarships are now available!
Registration Form (Includes separate tabs for fees, lodging, and speakers):
https://www.regonline.com/builder/site/tab3.aspx?EventID=2329482
Scholarship info:
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