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in reply to: COPING Strategies – Memory Issues #1185356
Memory is one of those issues (like difficulty losing weight or joint/tendon issues) where there is a great deal of anecdotal evidence from Graves’ patients, but there just isn’t good research to help us sort out “causation” vs. “correlation”.
At the conference, we’ll be providing some suggestions for coping strategies for those who *are* experiencing memory issues. There certainly won’t be any assertion that Graves’ causes memory dysfunction or that everyone who has Graves’ has experienced memory issues.
in reply to: Newly diagnosed and treatment options #1185296Hello and welcome – yes, eye issues can appear either *before* thyroid dysfunction occurs or even years after treatment.
The approach right now is to wait until the disease enters the “cold” phase where symptoms are neither getting worse nor better. At that point, there are surgical options that can restore appearance. The exception is that if your vision is directly threatened, doctors can do emergency surgery to correct that ASAP.
There is currently a clinical trial going on for teprotumumab, which could provide a non-surgical treatment option. There have also been past trials of another drug called rituximab, which has yielded mixed results in thyroid eye disease.
You can also try steroid therapy (which of course, comes with risks and benefits), although the improvements are generally *not* permanent.
in reply to: COPING Strategies – Memory Issues #1185354Dr. Ira Lesser with UCLA has made a number of presentations at past GDATF events on the emotional impact of Graves’ disease.
https://www.youtube.com/watch?v=CB8_5rbCso8&t=346s
Although the actual research isn’t really robust, Dr. Lesser notes that many patients experience memory issues. (I’ve personally experienced this post-diagnosis, and from a recent Facebook poll that we did, many members of the Graves’ community have as well).
I don’t believe the mechanism is well understood. In fact, Dr. Lesser noted that patients might really be experiencing *attention* issues – which would make recall problematic – as opposed to actual *memory* issues.
The GDATF assisted with a patient survey on neuropsychiatric complaints of Graves’ disease patients that took place in the early 1990s and was updated a couple of years ago. Hopefully, the updated results will be published soon, but this was info on the older survey:
in reply to: Told “wait and see” while losing my health & job #1185349Hello – A consult with a surgeon certainly wouldn’t hurt if you have surgical expertise where you live or if you are willing to travel. This is definitely a procedure that you *don’t* want done by someone who only does one or two thyroidectomies per year!
You mentioned that your T4 was low or low normal – I wonder if that is contributing to the fact that you aren’t feeling well. (Although the doc would certainly want to take the tachycardia into account before tweaking the dose).
Take care – and keep us posted!
in reply to: Just curious about RAI #1177983Hi Barbra – That is a really old thread, and that individual no longer participates in our community.
I’ve left it up for transparency purposes, as I don’t like to delete posts unless it is REALLY necessary.
Fortunately, these days, our members are able to express differing opinions while still being courteous to each other.
in reply to: Graves Disease and neuropathy of feet #1062378@akshayv – Are you a Graves’ patient? If so, we are happy to have you join – but it was a bit of a red flag that your first post mentioned a product.
In addition to the issues Liz1967 mentioned, there is a risk of recurrence if you leave thyroid tissue behind after RAI or thyroidectomy. So now the practice is to do a total thyroidectomy (or “near” total, as tiny amounts of tissue might get left behind) or to give a “fully ablative dose” of RAI to ensure that all thyroid tissue is removed or destroyed.
in reply to: Daughter ( 16) surgery? #1185335One final thought would be to have a doctor or nutritionist review your daughter’s diet changes. If your daughter is following a super restrictive diet plan with a lot of food groups eliminated, that could be contributing to the exhaustion!
UPDATE: Registration is now live!
Registration link: https://www.regonline.com/builder/site/?eventid=2329482
Hotel reservation link: https://secure3.hilton.com/en_US/hi/reservation/book.htm?execution=e1s1
Register by May 15th for the earlybird rate – $175 for current GDATF members and $210 for new/renewing members. For those with financial need, a limited number of scholarships will be offered – check back soon for details!
Our host hotel will be the Hilton San Diego Airport/Harbor Island. You can book your room a special conference rate of $179/night using the link below, or check out the “Lodging” tab of the registration website. This rate is good until May 15th or until the room block is sold out, whichever comes first. The hotel has a free airport courtesy shuttle, so no need to rent a car!
in reply to: Just curious about RAI #1177980Hello and welcome – this is an older thread, and the last poster hasn’t been active for almost 2 years, so I’m not sure if you will get a response. However, my guess is that the “precautions” refer to post-RAI radiation safety guidelines where for several days after treatment, you must keep your distance from small children and pregnant women and take extra precautions with washing dishes & laundry, etc.. These exact guidelines will vary by state and by lab.
TT – Total thyroidectomy
ATDs – Anti-thyroid Drugs (methimazole and PTU)
PTU – See above
DDT – ?, an older pesticide, not sure why it was discussed here.*edited post 4/11/18 to correct typo
in reply to: Daughter ( 16) surgery? #1185332Hello and welcome – It is really difficult to determine if thyroidectomy would alleviate your daughter’s symptoms. If the methimazole has failed to control her hyperthyroidism – or if her levels have been constantly swinging back and forth – then yes, she might feel better after a definitive therapy like surgery. But there’s no guarantee that this would be the case.
This link will hopefully be of interest. The GDATF and The Children’s Hospital of Philadelphia co-hosted a seminar in 2014 on kids and Graves’ disease, and it goes through the risks and benefits of all the different treatment options.
https://www.youtube.com/playlist?list=PLkmq2Wfl__LNKtIAYwBbAGQri3bVmcp1w
Wishing you all the best as you make this difficult decision.
Hello and welcome! There is a significant risk that hyperthyroidism will recur if antibody levels are elevated, even if TSH, T3, and T4 are normal.
If you and your doc have agreed on discontinuing the meds, just make sure you have regular followups scheduled to see if your levels are creeping hyper again. Also, pay attention to your body, and if you feel those old hyper symptoms coming back, definitely call the office to get in for labs ASAP!
I took methimazole for 7 years and weaned off reeeeeaaallllly slowly. By the last year or so, I was taking just the *tiniest* crumb of meds (1/4 of a 5 mg tab) twice a week!
in reply to: Third relapse #1183512Hello – Both options have risks and benefits. As with *any* surgery, thyroidectomy comes with a risk of complications. The most common complications with this type of surgery are damage to the nerves around the vocal cords and parathyroid glands. Having an experienced surgeon is important in order to minimize the risk of these complications.
RAI may be a concern for patients with eye involvement (as there is a higher risk of development or worsening of eye disease) and for patients who are looking to plan a pregnancy. (Patients are advised not to try to conceive for 6-12 months following RAI, and even after that, antibody tests are recommended to assess the risk of passing them on to the fetus). You can reduce the risk of worsening TED with a course of steroid therapy, but of course, that comes with its own risks!
A final note is that if you’ve been doing really well on the carbimazole, talking to your doctor about adjusting your dosing might get your levels straightened out again.
@sbaland – Hello and welcome!
Probably the reason your endo is having you look at treatment options is due to the heart palpitations. For patients with no symptoms, a “watch and wait” approach is often used for subclinical hypER.
Agranulocytosis is quite rare and usually occurs early in treatment. A severe sore throat with fever usually occurs in conjunction with this particular side effect. If a White Blood Cell Count confirms the diagnosis, your doctor will likely ask you to stop taking the meds and consider other treatment options. If I was subclinical hyper and my doc was recommending methimazole, my bigger question would be to ask the doc for his/her strategy on balancing the dosing to avoid knocking Free T4 and T3 too far down.
I don’t know that peri-menopause is necessarily a trigger for Graves’ – but the symtpoms can certainly overlap, making it tricky to get a correct diagnosis!
Hopefully, you have followup labs scheduled in the future – with your TSI above the cutoff and your family history of Graves’ & other autoimmune diseases, you definitely want to make sure to jump in with treatment if you *do* go into full-blown (“overt”) hyperthyroidism.
in reply to: “Euthyroid” but disabled by symptoms? #1185318Hello – You mentioned that your T4 went low; hopefully, your doc is determining your dosing based off of Free T4 and T3 and not just TSH. In general, you should see some relief once your levels are both normal *and* stable. If your labs are normal today – but they have been cycling hyper/hypo, it could take some time to really get symptom relief.
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