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in reply to: New Diagnosis #1185321
Hello – WOW, you have a lot to deal with on top of a new diagnosis! For now, I think the biggest priority is to make sure your new location has access to a doctor who can get lab tests done for you every few weeks and tweak your dose of carbimazole as needed. An endo would be preferred, but a general practitioner can handle labs and dose adjustments in a pinch. You have two other treatment options (radioactive iodine and surgery), but both would require the expertise to administer (particularly with surgery) and you would still need labs and doctors’ visits every few weeks until you make sure you are on the right dose of replacement hormone.
If you check out the “looking for a doctor” thread in the announcements section of the forum, some of the search engines do have options to search all over the world.
in reply to: Second go around w/Graves #1185313Hello – Check out #7 on this list for info on getting email notifications…
https://gdatf.org/forum/topic/42254/
Hope all goes well with the scan!
in reply to: Newly diagnosed and treatment options #1185290Hello – Graves’ antibodies won’t factor in to the dosing post thyroidectomy, as your dose of replacement hormone will be based on TSH and Free T4/T3. It might take a couple of follow-up visits before the dose is exactly right.
The one area where Graves’ antibodies do come into play post-TT is for women who are pregnant. Antibody testing is recommended at around 20+ weeks to assess the potential risk of passing antibodies on to the fetus. This risk should be very low – as antibodies generally decline after thyroidectomy – but is something to be aware of.
in reply to: Second go around w/Graves #1185308Hello and welcome – a few notes…
Definitely ask your primary care provider if you should get started on antithyroid meds while you wait to see an endocrinologist. There are endo shortages all over the country, so many primary care docs are comfortable prescribing & monitoring these meds until the endo can take over. You can also ask the endo to place you on a cancellation list if your schedule is flexible – if someone with an existing appointment cancels suddenly, you can have their spot.
You mentioned needing a scan for both the mass and the Graves’. Ask about doing antibody testing (TSI or TRAb) in lieu of the scan for Graves’. The thyroid uptake & scan is primarily useful in determining the cause of hyperthyroidism *if* antibody tests for Graves’ come back negative (an inflamed thyroid spilling out stored hormone vs. an overactive thyroid nodule).
Please continue your efforts to quit smoking! Dr. Fatemeh Rajaii of Wilmer Eye Institute, Johns Hopkins Medicine did a presentation for the GDATF in Baltimore last year. She explained that the current number of cigarettes is a risk factor for thyroid eye disease, so patients can show improvement in their risk profile fairly quickly after quitting.
Remember that YOU are the customer, so please don’t be afraid to be the squeaky wheel – or to seek out a second opinion if your doctor isn’t taking your concerns seriously.
in reply to: Newly diagnosed and treatment options #1185275Concur 100% with Liz1967 that diet will NOT cure your Graves’ – whatever website is claiming this is true is putting patients at extreme risk.
The first year after I was diagnosed, I went on an extremely restrictive diet (in addition to taking methimazole and having regular visits with my endocrinologist) – no gluten, soy, dairy, eggs, etc.. Quite frankly, the only thing the diet changes did for me was cause extreme stress! Other patients report that they do feel better with diet changes in conjunction with conventional medical treatment.
Eye problems can occur before thyroid dysfunction, after treatment, or not at all. If you have no symptoms, great, but this is just something to be aware of. For some patients, their first eye symptoms (swelling, grittiness, dryness) appear months or years later – and they end up getting misdiagnosed as having allergies!
in reply to: Newly diagnosed and treatment options #1185271Hello and welcome – we’re fellow patients here, not docs, but a few notes…
Liver and skin issues can be a reaction to anti-thyroid medications, but in other cases, can actually be caused by the hyperthyroidism itself.
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”.
On the liver issues, baseline testing prior to starting the meds is recommended. That will help sort out whether the liver issues are due to the thyroid or the medication.
We have patients here who are success stories with RAI, although there are certainly pros and cons. One of the larger studies on cancer & RAI involved 35,000 patients who were followed for 20+ years. This study indicated no increased risk of death from cancer. However, other smaller studies have noted a slightly increased risk of specific types of cancer following RAI. A more immediate concern would be whether you have existing eye involvement, as RAI can potentially worsen existing disease. A course of steroids can reduce this risk to near zero – but of course, steroid therapy comes with their own risks and benefits!
At this time, there are NO alternative treatments that have been proven to be both safe and effective for Graves’ disease.
A final note – keep in mind that many have RAI and simply move on with their lives. These folks generally *aren’t* posting on the Internet – so that is why the info online is skewed towards negative experiences!
in reply to: I don’t want to wait and see. #1185264Hello and welcome – we’re fellow patients here and can’t tell you what the right course of action for YOU is, but here are a few notes…
1. The American Thyroid Association recommends testing levels 2-6 *weeks* after starting methimazole. It would be very unusual to wait 4 months for your first test! Most patients go through several visits after starting the methimazole, each a few weeks apart, to get their levels checked and to have the doctor tweak the dose as needed.
2. The idea with the 18 months is that this is a *guideline* timeframe (not a hard and fast rule) to see if your body has gone into remission on the medications. You should NOT have to go for 18 months with your levels out of whack and feeling terrible!
3. Many here have had success with RAI and surgery (and hopefully, they will chime in with their stories). However, keep in mind that you do NOT get a chance to change your mind after getting treatment with one of these choices – so that is one benefit of the “wait and see” approach with methimazole!
in reply to: 3 relapse in 6 years – time for tt? #1185259Hello and welcome! Hopefully, you will get some responses from those who have chosen thyroidectomy.
Another round of antithyroid meds would also be an option if you tolerated the meds well and it kept your levels under control.
Thyroidectomy does not worsen TED, and we’ve heard anecdotal stories from some who had improvement in eye issues following thyroidectomy. There was also a study out of University of Michigan that suggested that patients who undergo thyroidectomy tend to have better outcomes in regards to TED.
Wishing you all the best!
Hello and welcome – hopefully, you will get some responses here, although you are correct that more people have had surgery for thyroid eye disease than radiotherapy. Here’s some info from the International Thyroid Eye Disease Society:
Hello and welcome – We’ve certainly heard of patients feeling symptomatic as T3/T4 are increasing…even if in the normal range.
That’s good that you are seeking a second opinion, as the family history of Graves’ is definitely a red flag! It might even be helpful to get antibodies tested (TSI or TRAb). Doctors can’t treat the antibodies directly, but if you test positive, it might convince them to monitor your levels more closely to see if you do progress to subclinical* or overt hyperthyroidism.
*Treatment for subclinical hyper is usually “watch and wait” – unless you are symptomatic or if you are at risk for heart issues and/or bone loss.
in reply to: 1 yr after RAI .. Graves Disease #1185253Hello and welcome – for those who have stable levels are feeling well after RAI, TSH alone is fine. But since you are symptomatic, it might be helpful to take a look at your Free T4 and T3 as well to see if that can shed some light.
The concern with Graves’ antibodies and suppressed TSH is primarily for those who are in the early stages of taking antithyroid meds like methimazole.
Hopefully, your doc is taking your symptoms seriously and is working with you on a solution. If not, a second opinion might be helpful!
in reply to: Long term symptom questions #1185242Hello – Some patients do report lingering symptoms even after treatment, but agree with Liz1967 that the tremors should be checked out.
Symptoms of anxiety can occur in conjunction with hyperthyroidism – or you can also have a separate diagnosis. This video from Dr. Ira Lesser does a great job of explaining how these issues can overlap:
https://www.youtube.com/watch?v=CB8_5rbCso8&t=25s
(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).
in reply to: marijuana use and thyroid eye disease #1185237Hello and welcome – I’ve not seen any well-designed studies on the issue, so best to err on the side of caution and avoid both. If you are using medical marijuana for another condition, definitely talk to your provider (and an ophthalmologist as well) about the risks and benefits of continuing.
in reply to: side effects from uptake test #1185233Hello and welcome – I would urge you to contact your provider ASAP on the symptoms that you are experiencing. Hyperthyroidism itself can cause elevated liver enzymes, but Tapazole can also affect the liver. Best to err on the side of caution and get in to see your doctor!
Hopefully, others here will chime in with their experiences with RAI. You can also use the “search posts” feature to look for posts by keyword – RAI, radioiodine, etc..
in reply to: New diagnosis of graves with heart problems #1185230Hello and welcome – Great catch on the med that your dermatologist prescribed – I would *definitely* run that past your endocrinologist, as excessive iodine can make hyperthyroidism even worse. He/she might recommend stopping that med – but as your thyroid levels stabilize, you will hopefully see improvement in the hair issues.
I don’t know if your SVT was diagnosed long before your Graves’, or if they occurred in a similar time frame. Hyperthyroidism can actually lead to heart issues like tachycardia and atrial fibrillation. If they occurred around the same time, it’s possible you could see some relief from that.
We’ve heard from patients who have used various dietary approaches (vegan, gluten-free, paleo, anti-inflammatory, low iodine, eliminating food sensitivities), but there just isn’t a lot of good research to determine if one of these approaches is better than the others for Graves’. Many patients also choose to minimize their intake of processed foods with unpronounceable ingredients and instead focus on eating whole, unprocessed foods. It sounds like you are already aware of potential issues with iodine – definitely stay away from supplements and foods (like seaweed snacks) that have massive sources of iodine.
On the exercise, give yourself a break until your levels are stable and your symptoms are resolving. If you have the energy and want to be active, consider things like walking, gentle yoga, and tai chi.
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