[Kimberly]

in reply to: Rough recovery from RAI #1185227

Hello and welcome – hopefully others who have had RAI will chime in.

If you are still extremely symptomatic, it’s worth talking to your doctor about going back on the Tapazole.

Also, in terms of dealing with hypO – the goal will be to monitor levels closely and get you started on replacement hormone *before* you go full-blown hypo. Definitely keep up with your labs – and if you do start to feel hypO symptoms come on, call your doctor’s office ASAP rather than waiting for your next scheduled appointment.

[Kimberly]

in reply to: Failed Radioactive Iodine Uptake Test #1185202

Yes, sounds like a second opinion and a fresh set of eyes might be helpful!

I’ve not heard of a normal TSH precluding a repeat uptake test – although certainly you might have to stop meds for a period of time.

One note on surgery: this is only a good option if you have local access (or the ability to travel) to a high-volume surgeon. There are always risks with any surgery, and while you can never get the risk of complications down to zero, the risk can be significantly reduced in the hands of a highly experienced surgeon that does a lot of thyroidectomies.

[Kimberly]

in reply to: 6 yr old child with Graves and Graves opthalmopathy #1185225

Hello and welcome – so sorry to hear your little guy is going through this.

The GDATF’s YouTube Channel has some great resources for parents. Under “Playlists”, check out “Graves’ Disease in Children & Adolescents” (a seminar that we did in conjunction with The Children’s Hospital of Philadelphia) and under “Videos”, check out the presentations from Dr. Scott Rivkees (Based in Florida) and Dr. Michael Gottschalk (based in California).

https://www.youtube.com/user/GravesAndThyroid/featured

The “Looking for a Doctor” section of this forum has a few options where you can search for a doctor near you. Most will let you select the specialty “pediatric endocrinology” – hopefully, Seattle Children’s has that expertise.

I know that he feels crummy right now (been there, done that), but he should start feeling better once his levels are stabilized. (The meds start working right away to block the production of new thyroid hormone, but it can take a few weeks for his body to burn off existing stored hormone).

In terms of the eye issues, it’s possible he will see some relief as his thyroid levels stabilize, but it would be helpful to get him in to an ophthalmologist for an evaluation. If he’s currently exposed to any second-hand smoke, be sure to keep him away from that, as it’s believed to be a risk factor in the eye disease. (Smoking is *definitely* a risk factor, but there’s not as much research on second-hand smoke).

Wishing you and your family all the best!

[Kimberly]

in reply to: Question regarding Endo visits since TT #1185173

Liz1967 wrote:

If weight loss moves tsh upward, just take more levothyroxine.

Just a note that for many who lose weight, lab tests confirm that a *reduction* in replacement hormone is needed. AZGravesGuy’s story was not just about overall weight loss – but also about adding a significant amount of lean muscle mass.

Since the “rule of thumb” dosing recommendations deal only with weight, it would be very interesting to see further research on the affect of body composition on dosing requirements.

[Kimberly]

in reply to: Login Issues? Try Clearing Your Browser History and Restart #1184875

Had to do this again today…

[Kimberly]

in reply to: Living with Graves’ Disease #1185204

Hello and welcome – hopefully, those who have had RAI will chime in with their experiences.

As for remission, the definitions vary a bit. Many docs use the term “remission” to someone who has done a round of antithyroid meds (like methimazole or PTU) and then has stopped the meds and maintained normal levels for a year or more.

That definition doesn’t really fit for those who have had RAI, although I suppose that when you get your antibodies down to zero, that could be considered “remission” as well.

If it’s been a while since you’ve seen your primary care doc, it might be worth checking in with him/her on the nausea.

Hope you can get some relief!

[Kimberly]

in reply to: Failed Radioactive Iodine Uptake Test #1185198

Hello and welcome – hopefully, someone here with a similar experience will be able to comment.

This is certainly unusual, given that you have no inflammation and a definitive diagnosis of Graves’!

The only other thing I can think of would be to ask whether your diet includes a lot of high iodine foods (such as the seaweed wraps that come with sushi) or if you’ve recently had any type of diagnostic testing using contrast dye.

You might also ask your doctor if a low-iodine diet might be helpful as you prepare to re-do the test. Most endocrinologists do NOT require this for a scan, but mine did. You can find more info on this at the ThyCa.org website, as the low-iodine diet is standard practice for thyroid cancer patients who undergo RAI. (It’s the same treatment that Graves’ patients receive, but with a much larger dose).

Take care – and keep us posted!

[Kimberly]

in reply to: My partner was diagnosed with Grave’s Disease for half a year. What are your thoughts? #1185194

Hello and welcome – many patients report emotional issues, particularly when thyroid levels are out of balance. Your wife will hopefully be fine, since she is under control with meds – although she should have antibody tests done (TSI or TRAb) if her doctor ever wants her to discontinue taking the medication.

If she does go off the meds, she should watch her symptoms and have regular followup testing done. Some patients will enjoy a period of remission, while others end up going back on the medications. Still others will opt for a permanent option like RAI to destroy the thyroid or surgery to remove the thyroid (both result in hypOthyroidism, which requires taking meds for life).

This video might also be of interest; it talks about the emotional aspects of Graves’ disease:

https://www.youtube.com/watch?v=CB8_5rbCso8

Wishing you and your wife all the best.

[Kimberly]

in reply to: 12 year old with GD and moderate / severe TED #1185190

Hello and welcome – Most of our regular posters here are Graves’ patients themselves, but you might use the “Search Posts” feature to look for keyword such as “parent”, “daughter”, etc. – and then you can use the Private Messaging system to connect.

This video might also be of interest; it’s from a seminar that the GDATF did with the Children’s Hospital of Philadelphia in 2014:

https://www.youtube.com/watch?v=ZTOU7SsvvQE&list=PLkmq2Wfl__LNKtIAYwBbAGQri3bVmcp1w&index=2

If the above link doesn’t work because it takes up 2 lines, you can go to YouTube, search for our screen name (GravesAndThyroid) and then go to the “Playlists” section.

Wishing your daughter all the best – this is a difficult disease for adults to deal with, particularly in social situations, so I’m really sorry she is going through this.

[Kimberly]

in reply to: New dx of graves at 28yrs old. Need advice! #1185184

Hello and welcome – I’ve never heard of a doctor pushing surgery or RAI simply because antibody levels didn’t go down! Some docs will recommend RAI or surgery after 12-18 months on Tapazole, but we are seeing a lot more support in the medical community for longer term use.

Issues where doctors might be more likely to recommend RAI/surgery would be if your husband is having serious side effects with the Tapazole, or if the Tapazole isn’t effectively controlling his thyroid levels.

Hopefully, others will chime in – but we have community members here who have shared past experiences with both RAI and surgery, so you can use the “Search Posts” feature to look up old posts by keyword.

If your husband wants to pursue surgery/RAI, great – but he needs to understand the risks and benefits, and also the fact that he won’t get a “do-over” if he changes his mind later!

If he’s currently being treated by a primary care provider, an appointment with an endocrinologist might be helpful. (Or consider a second opinion). You can find doctors near you using the “Looking for a Doctor?” thread in the announcements section of the forum.

[Kimberly]

in reply to: Login Issues? Try Clearing Your Browser History and Restart #1184874

And again…

[Kimberly]

in reply to: GD with TED #1184552

Wonderful news – thanks for sharing your success story!!

[Kimberly]

in reply to: Just sharing some “ah HA!” findings #1185150

That’s a good though, @Liz1967 – I don’t know if the actual liquid is available yet (the article below was from Feb. and said 6 months), but Tirosint *is* currently available in a gel cap.

http://www.empr.com/news/tirosint-sol-hypothyroidism-thyroid-thyroxine/article/638154/

The down side is that most insurance won’t cover it, so it runs around $70/month – and that’s if you use a specialty pharmacy or if you get coupons (which are only good for 18 refills).

[Kimberly]

in reply to: Just sharing some “ah HA!” findings #1185147

Hello – I’m not clear on whether your labs were done in advance of an upcoming appointment or if they were ordered at your last one.

If you’ve already had the appointment and the labs were a follow-up, definitely call to ask for some guidance.

If the appointment is coming up and it’s a ways away, it wouldn’t hurt to put in a call now.

The GDATF’s Founder, Nancy, tells a story where she tried self-dosing based on how she was feeling. She ended up going in the WRONG direction – and she has a background in healthcare! So always good to bounce these issues off your doc!

[Kimberly]

in reply to: RAI questions #1185152

Hello and welcome – The guidelines regarding nuclear medicine safety are specific from state to state, so if there is a conflict, I would go with the guidelines that the nuclear medicine facility gave you. Or if in doubt, go with the one that is the strictest, just to be on the safe side.

Also, we are fellow patients here, not doctors, so I would address the issue regarding your sore throat and chills to your endocrinologist. Remember that you are the customer – please don’t be afraid to be the squeaky wheel. You deserve answers before having this procedure done.

Hopefully, others who have had RAI will chime in with their experiences as well.

[Author]

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