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Update: Registration is now live for the Phoenix/Tempe, AZ event on Oct. 5th!
in reply to: Vaccine reaction? Beta blocker side effects? #1185636Hello – I’m not familiar with that specific issue occurring after a tetanus shot, but this link will allow you to report a reaction. This process is managed by the U.S. FDA and Centers for Disease Control – and the data is used to spot potential vaccine issues.
The 200 bpm must have been terrifying. Hopefully, your endocrinologist is in the loop, is monitoring your levels accordingly, and is having a discussion with you about treatment options – instead of the ER staff trying to get you stabilized and sending you out the door!
This piece from Mayo Clinic on beta blockers might also be worth a read – any chance you are also dealing with diabetes?
Hello and welcome – this patient story from our website might be of interest.
https://gdatf.org/site_media/uploads/j._sonkin_patient_story.pdf
If you are on Facebook, you might consider joining our closed group there, as I know at least one member who has Graves and MG.
Have you talked to your doctor about the contrast test? Due to the iodine, these types of tests can actually *trigger* Graves’ in people with no prior history – so since you already have a diagnosis of Graves’, it would be worth raising the issue of whether the info you get from the results will be meaningful enough to outweigh the risks.
in reply to: TED or Glaucoma #1185630Hello – The distinction between TED & glaucoma can be tricky…a second opinion might be helpful if you aren’t sure about the diagnosis. ASOPRS is a good place to start…these docs are surgeons, but they also tend to have good expertise on Graves’.
https://www.asoprs.org/index.php?option=com_mcdirectorysearch&view=search&id=12029#/
Also, this is an older piece from the GDATF, but might be of interest: https://www.gdatf.org/about/about-graves-disease/patient-education/glaucoma-and-graves-disease/
in reply to: Cold medicine and Graves #1185628Hello – I think the bigger concern is if you are hypER and take a cold med that could ramp up your heart rate, but your local pharmacist would be a good person to get recommendations from. I do know that NyQuil makes a product for people with high blood pressure, so that might be worth asking about.
in reply to: New site oneGRAVESvoice.com #1185624Hello – That is a separate platform that was designed as a partnership between the GDATF, Horizon Therapeutics, and rareLife solutions. The social wall is similar to this forum, but there is also a library featuring hundreds of articles vetted by the GDATF. It’s possible that users here could end up migrating to the other site.
When you say you got an email recommending it, hopefully, you mean the GDATF monthly e-newsletter – as we do NOT give out email addresses. If you got something that wasn’t from the GDATF, please let us know.
in reply to: High TSH and High FT4 #1185618Hello and welcome – hopefully, there are other community members here who can share personal experiences on this issue. That certainly is unusual that TSH would be high at the same time that T4 is high. Has your doctor recommended additional testing and followup to potentially help you put the puzzle pieces together on this issue?
in reply to: RAI, my experience #1185621Hello and welcome…and thanks for sharing your journey here!
in reply to: Graves disease reaching out from past?? #1185617Hello and welcome…sorry that you are dealing with this, but glad that you found us. Yes, Graves’ opthalmopathy (also called thyroid eye disease) can occur after treatment for hyperthyroidism…sometimes even decades later.
The eye issues can occur even with normal thyroid levels, but it might be helpful to get labs done just to make sure you are on the right dose of meds. (The dose can change over a period of years.)
Hopefully, your ophthalmologist is familiar with Graves’ and has advised you on next steps. In the meantime, glasses with prisms (either stick-on or ground in to the prescription) can help give you single vision. Botox can also be used for temporary relief of double vision. If you are a smoker or are around second-hand smoke, be aware that this can aggravate thyroid eye disease.
Take care – and please keep us posted!
in reply to: Rapid onset of double vision-TED #1185615Hello and welcome – The American Association of Endocrine Surgeons and the American Head & Neck Society both have search engines where you can locate a surgeon near you.
https://www.endocrinesurgery.org/Membership/Find-a-Surgeon
https://www.ahns.info/find-a-physician/
Make sure you get someone who does the procedure frequently (I’ve heard varying numbers, but approx. 35 or more per year) and who is familiar with thyroidectomy specifically for autoimmune thyroid disease.
Wishing you all the best!
in reply to: New treatment for TED #1185613Thanks for posting – this is definitely a promising option! Once the FDA determines that the filing is complete, it looks like it’s the FDA’s call whether to complete the approval process in an accelerated 6-month time frame (so perhaps early 2020).
in reply to: Newbie with LOTS of questions #1185600Hello and welcome! Hopefully, you will get some responses here, but you can also check out the “looking for a doctor” thread in the announcements section of the forum.
If your insurance allows, it’s really helpful to get a lab slip in advance so that you can get labs done *before* your appointment. That way, you can spend the appointment time with your provider discussing the results and his/her recommendations, instead of trying to make sense of their instructions over the phone!
in reply to: New here…allergies to Methimazole and questions #1185606hypermarie wrote:1. Since I’m allergic to Methamizole, does that mean that I’ll be allergic to PTU? My doc mentioned this but she’s hesitant about this because of potential liver disease.
3. I’m also allergic to shellfish. Would that stop me from doing the Radioactive Uptake Test and eventually RAI? I’ve been reading up on this and it looks like it probably would be ok.
4. From what I’ve been reading here, I need to have my thyroid levels stabilized before TT, which is my preferred option anyway. Is there another way? My levels are pretty bad…ft4 is 4 times the upper limit and TSH is .001.
5. So far, I have no eye involvement. Would TT be even an option for me?Hello and welcome – we’re fellow patients here, not doctors, but a few notes…
Yes, a certain percentage of patients who have a reaction on methimazole will have the same reaction on PTU. Hives are tricky, as they can be a side effect of the meds – but they can also be related to the hyperthyroidism itself.
It’s believed that the issue with shellfish allergies is a specific protein, not the iodine – so we’ve not heard of any issues with patients with this type of allergy getting RAI.
The preference is to have normal thyroid levels before surgery, but the doc can use a combination of beta blockers and potassium iodide to reduce the risk of thyroid storm.
There’s no evidence that surgery causes eye issues, and there’s some anecdotal evidence that some patients see an improvement of eye issues following surgery.
in reply to: 21 years post RAI and symptoms of Graves return #1185602Hello and welcome – Hopefully, your visit with your endo will include labs that will shed some light as to what’s’ going on. Yes, hyperthyroidism can recur after RAI if there is still remaining tissue – but it’s also possible that your dose of levothyroxine just needs an adjustment in order to get your levels back in the “normal” range. Hopefully, you can get some relief soon.
Space is still available for our upcoming FREE patient event in Seattle!
EDIT: We had to tweak the agenda…here’s the latest!
https://gdatf.org/site_media/uploads/agenda_as_of_6-28-19.pdf
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