[Kimberly]

in reply to: Thyroid Regeneration? #1173334

If there is remaining living thyroid tissue after RAI, it’s rare, but the tissue *can* regenerate and cause a recurrence of hyperthyroidism. However, the more common scenario is that patients find that their need for replacement hormone can change over time, so a dosage adjustment might help.

However, as gatorgirly noted, making a dosage adjustment on your own without labs can actually set you back instead of making you feel better, so I would definitely call your endo’s office ASAP and ask for new labs. If your schedule is flexible, ask to be placed on their cancellation list, which can potentially get you in sooner.

Take care!

[Kimberly]

in reply to: Long term Methamazole use? #1171484

Carito71 wrote:

KimberlyDo you know exactly why the Drs prefer only 12-18 mths? Is it all b/c of the liver situation?

When they started you on the Methimazole, did they start you at a large dose as they did me? How fast down the road did the Dr. lower it? Just curious.

Caro

Hello – there have been some studies that have not shown an improved remission rate by going longer than 18 months on anti-thyroid drugs, which is why the 12-18 month limit was recommended in the latest medical guidance. However, ironically, that same guidance document recommends that patients in Europe have a 50-60% chance of remission after 5-6 years on the ATDs.

The doctors I’ve spoken to who are opposed to long-term use of ATDs believe that the more serious side effects can happen at any time and any dose, although they are *much* more likely at high doses and also early in the treatment process.

Every patient starts from a different level and responds differently to the meds. I started on a dose of 15/mg of methimazole per day, and the doc cut that in half when I went borderline hypO after just a few weeks. Your mileage may vary!

[Kimberly]

in reply to: What my surgeon said #1173156

Hello – TPOab is a completely different antibody that is more commonly associated with thyroiditis, although many Graves’ patients happen to test positive for this antibody as well.

[Kimberly]

in reply to: OK now what…RAI Seriously??? #1173297

Hello – This is a difficult decision that you and your doc will need to make. Although the standard in the U.S. is to limit ATD use to 18 months, some doctors will support longer-term treatment (which is more the norm in Europe and Japan). I made some comments about this approach in this thread:

(Note on links: if you click directly on the following 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).

http://www.gdatf.org/forum/topic/42509/

As others have said, there is no perfect risk-free treatment…so all we can do is research from credible sources and consult with a medical professional that we trust.

Take care — and keep us posted!

[Kimberly]

in reply to: What my surgeon said #1173154

Hi all – Just a quick note that TSI and TRAb are actually different antibody tests with different reference ranges. However, due to the expense of testing, most doc’s offices that I know of tend to order one or the other.

[Kimberly]

in reply to: THURSDAY NIGHT AT THE SAN DIEGO CONFERENCE #1173054

Hello – Yes, for the last couple of years, there have been at least 1 or 2 other attendees from Canada.

In terms of being able to register for the conference, you should be fine waiting to see if your health issue resolves and registering in September. What is more limited, though, is the number of hotel rooms that the Kona Kai reserves for us at the discounted rate of $109/night. Right now, there are plenty of spots, but it’s hard to predict what the mix of local vs. out of town registrants will be over the next few weeks, so the hotel is a tougher call.

Sorry if that made things *more* confusing instead of *less* confusing!

[Kimberly]

in reply to: Lab Results help? #1173274

Hello – We’re fellow patients, not doctors, so we can’t give medical advice or interpret labs. However, a couple of thoughts…

1. How are you feeling? The more important measure is your T4, as TSH can stay suppressed for quite some time in Graves’ patients. Some patients find that they feel their best at the top of the range, middle, etc.. If you aren’t feeling well on your current dose, you should certainly talk to your doctor.

2. Dosing with Methimazole/Tapazole is part art, part science, and it can take some tweaking to find the sweet spot that will normalize your labs *and* get you to feeling well. I’ve been on Methimazole for going on 5 years, and I’ve spent most of that time alternating different doses on different days (for example, 5 mg vs. 7.5 mg every other day), at my doctor’s advice.

3. Have you had antibody levels tested? (TSI, TRAb). If you were to come off of the meds while your antibodies were still raging, a recurrence of your hypER symptoms would be very likely.

Take care!

[Kimberly]

in reply to: I need help in Canada #1173263

Hello and welcome! One of our facilitators, James, is from Canada, so hopefully, he will chime in.

I’m not aware of an organization specific to Graves’, but there is a Thyroid Foundation of Canada:

(Note on links: if you click directly on the following 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).

http://www.thyroid.ca/

Also, one of the attendees at last year’s GDATF conference in Boston blogs about her personal experiences, and she might have some additional suggestions:

http://www.rayannesthoughts.blogspot.com/

Hope this helps!

[Kimberly]

in reply to: Labs After Thyroidectomy #1173254

Hello – Sorry, I’m not able to put the puzzle pieces together, either!

You and your doctor will need to make the decision on adding T3, but as Shirley noted, if you are making tweaks too early and too often, that can make it even more difficult to find your “sweet spot”.

Take care!

[Kimberly]

in reply to: Positive attitude #1173236

@Jules – If this was Facebook, I would give your post a “Like”. Great insight!

[Kimberly]

in reply to: Newbie with Graves – #1170780

@modo – I’m not familiar with that particular drug…I would suggest talking to your doctor or pharmacist about any possible interactions.

Hopefully, your doc is looking at Free T4 and T3 when making dosing decisions for you, and not just TSH. The latest medical guidance notes that TSH can remain suppressed for quite some time, and therefore is not a good benchmark for dosing early in the process.

Take care!

[Kimberly]

in reply to: Life after Graves #1173226

Welcome to the forum — and thanks for the encouraging words!

There are several regular posters here who have had been treated for thyroidectomy. Hopefully, you will get some responses from them, but you can also read their stories by using the “search posts” feature in the top right-hand corner of the screen and searching for keywords including “thyroidectomy”, “surgery”, etc..

I don’t think it’s necessarily a bad thing if your body is telling you to slow down! Before my diagnosis, I used to constantly skimp on sleep to try and get things done. Now I really try to make myself a priority…I am much more conscious of the commitments that I make, and I try (as much as possible) to avoid people and activities that drain my energy instead of *giving* me energy.

Take care!

[Kimberly]

in reply to: Crazy Journey #1173170

Thanks for the update! If the shortness of breath persists, I would continue to ask your doctor’s office about this. I’ve never been on a beta blocker, but shortness of breath is one of the first symptoms that I notice when swinging hypER. Wishing you all the best!

[Kimberly]

in reply to: ~~ Awake ~~ #1173222

Hello – Hopefully, you will get some other responses, but I would definitely report any new, worrisome symptoms to your doctor’s office.

I get these very occasionally, but hard to tell if it’s thyroid related or because I’m approaching that age where hot flashes become more common!

[Kimberly]

in reply to: Thank You #1173194

Carito71 wrote:

I’m able to do more and at times I even forget I’m sick.

Wow, that’s the best news ever! Thanks for the update…and for the kind words!

[Author]

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