[Kimberly]

in reply to: A Week Post-TT :) #1184303

Thanks so much for this detailed post – this will be a huge help to those who are considering surgery as a treatment option.

Wishing you all the best as you continue on the road to recovery!

[Kimberly]

in reply to: First time poster, Graves’ diagnoses in November #1184260

Hello – If you are reducing the propranolol, ask your doc if you should be reducing the methimazole as well. It can take some tweaking to find the right dose that will *keep* you in the normal range once you get there!

[Kimberly]

in reply to: 10+ pound “weight gain” since January 11??? #1184294

Hello and welcome back! I would get your endo appointment rescheduled as soon as possible, as fluctuating thyroid levels would be the #1 consideration to look at.

There are plenty of other issues that can cause unexplained weight gain, so definitely take in your food plan to your doctor for a review. There are other medical conditions that can cause weight gain, plus more common issues. Have you added a new medication to your regimen? Have you been consuming foods with a lot of sodium that could cause water retention? Were you eating a super restrictive diet at the first of the year and then the weight came back when you returned to normal eating patterns?

Whatever the cause, definitely get this checked out!

[Kimberly]

in reply to: Grave 5+ yrs low TSH #1184284

Hello – If the docs have your labs, I would still push them for some direction on dosing, rather than waiting for another 2 weeks feeling awful!

I know of people (and not just with Graves’) who have experienced muscle pain and weakness on cholesterol-lowering meds. It’s definitely worth a discussion with your doc on the risks and benefits of taking the Lipitor.

[Kimberly]

in reply to: Success Story (A Blast From the Past) #1184288

Thanks so much for checking in, Sue!

Yes, a change in generic manufacturers can have an impact on absorption. Is there some type of code on the label from your pharmacy? My pharmacy uses a 3-letter code for generics, so (if the code is right), you should be able to tell if there is a switch.

So glad to hear that you are happy with your decision! If you get a chance, please stop by the “Success stories” thread in the “sticky” section at the top of the posts. It’s always inspiring for newbies to hear from those who have “been there, done that”!

[Kimberly]

in reply to: Grave 5+ yrs low TSH #1184281

Hello and welcome! We are fellow patients on this site, not doctors, so we do not recommend making dosing adjustments on your own.

You are obviously not feeling well, so I would keep calling the doctor’s office until you can get some direction on what to do. Be sure to let them know the exact symptoms you are experiencing. Thyroid hormone replacement stays in the body for a fairly long time (the “half life” is around 7-8 days), so once you make a dose change, it takes several weeks to find out whether that is the right dose for you. Tinkering around from day to day can actually make it more difficult to find the “sweet spot” in the long run.

Take care – and keep us posted!

[Kimberly]

in reply to: Strabismus surgery…. #1184109

snelsen wrote:

Kimberly is a good source for knowing the recent thinking and research of how TED docs incorporate Graves’ labs (other than being hyper or hypo) into surgical decisions

This is actually an area that is subject to controversy. Some doctors won’t even consider surgery if TSI (which measures stimulating antibodies) is still elevated. Other docs don’t use TSI at all, but rely solely on whether eye signs and symptoms are fully stable (not getting either worse *or* better) to determine when it’s appropriate to do surgery. Other docs use a combination in making the decision as to when TED has reached the “cold” or stable phase.

[Kimberly]

in reply to: Largest eye muscles Dr. has seen in his 25yrs! #1184268

Hello – We are fellow patients here, not docs, but I have never heard of this approach to orbital decompression, either. If I was in your sister’s position, I would definitely seek a second (or third or fourth) opinion. This is a good site for finding a surgeon near you:

(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.asoprs.org/custom/directory/?pageid=3657&showTitle=1

Take care – and thanks for being a great advocate for your sister!

[Kimberly]

in reply to: First time poster, Graves’ diagnoses in November #1184257

Hello – yes, you can go hypo on anti-thyroid meds if your dose is too high. You need to find the “Goldilocks” dose that will keep your levels normal and stable – and this could take some adjustments over time. You will feel it if you start to go hypo. Every patient is different, but symptoms can include fatigue, joint pain, unexplained weight gain, constipation, dry skin, cold intolerance, and slow pulse.

I suspect that every patient is different in terms of whether they tend to get sick more with other illnesses. I actually had *fewer* colds after I got diagnosed, perhaps because I started being super careful about washing my hands and trying to use a tissue or something if I had to touch common surfaces. However, if you get a sore throat with fever, that is a potential side effect of the meds, so call your doctor ASAP if this happens. This is rare, but it’s always best to err on the side of caution!

[Kimberly]

in reply to: 3 year old with graves #1177608

Hello – This will vary by patient, but the majority of the time, a relapse will occur during the first 90 days. And for someone with high antibodies, relapse is *extremely* likely.

We’re obviously fellow patients here, not doctors, but personally, I would go back to the doctor and ask for the rationale for withdrawing your daughter’s meds now. Surgery is riskier if the patients is hyperthyroid. If that is the path that you feel is right for your daughter, I’m not understanding why they wouldn’t keep her on the meds and schedule surgery while her thyroid levels are normal.

Maybe they just want to give this one last chance before proceeding with a surgery that cannot be reversed. But I would ask about the doctor’s plans if your daughter does relapse. Would they put her back on the meds and then wait to do surgery? Keep in mind that side effects with anti-thyroid meds most commonly occur during the first 60-90 days. And if you stop the meds and restart, that period starts over. In other words, if your daughter stops the meds and then starts them again, she is at a much higher risk for side effects.

Do you have the option of getting a second opinion? Or maybe you can go ahead and schedule a consultation with a surgeon now to get his/her opinion on the process.

[Kimberly]

in reply to: New To GDATF – Eye Surgery(ies) #1184263

Hello and welcome – I have mild/moderate TED, but so far (knock on wood), nothing that is requiring surgery. Hopefully, those who have been through surgery will chime in.

Has your current ophthalmologist offered his/her opinion as to the best option? A second opinion might also give you a higher level of comfort.

I do know that the usual procedure is to do the decompression surgery prior to eyelid surgery.

In terms of pregnancy, yes, there is a risk that the Graves’ will relapse. However, the thyroid issues and eye issues don’t always occur together. My understanding is that it’s much more rare for the eye issues to recur, and when it does stress or smoking is often the culprit.

I know this is a tough decision, especially with such an important milestone coming up! Hopefully, others on this forum will be able to chime in with their experiences.

[Kimberly]

in reply to: First time poster, Graves’ diagnoses in November #1184253

Hello and welcome – sorry to hear about your diagnosis, but I’m glad that you found us. The good news is that the majority of patients respond well to treatment and get on with their lives.

The “Treatment Options” thread in the announcements section of the forum is a great place to start getting up to speed on the three options. All three choices have risks and benefits, so you definitely want to do your research.

Although it’s quite common for Graves’ patients to have some eye involvement, keep in mind that vision loss is *extremely* rare. And if by chance, you do start having serious issues, there is a surgery that can be performed to preserve vision. If you start having difficulty with colors (for example, something that should be red looks more brown or pink), that is a sign to get into a neuro-ophthalmologist ASAP.

On the yoga, maybe you can keep a routine on your own, but focus on more restorative poses, rather than the more strenuous ones? You definitely don’t want to get your heart rate up until your thyroid is under control.

On the dosing, every patient is different. I started at 15 mg/day, and then went from hyper to hypo fairly quickly, so the dose had to be decreased a lot.

Take care – and keep us posted!

[Kimberly]

in reply to: Blood tests in remission #1184250

Hello – We are fellow patients, not doctors, but here are a few thoughts…

First, you might consider comparing your labs over time. Even for levels that are in the “normal” range, some patients report having symptoms as levels were trending either hyper or hypo.

If your levels are indeed normal and stable, it might be helpful to get a second opinion to see if there might be another issue that could benefit from treatment.

If your insurance allows, it certainly wouldn’t hurt to have antibodies tested. However, the challenge is that if your thyroid levels are normal, there isn’t a specific treatment to target the antibodies. Antibodies can still have an impact even with normal thyroid levels; for example, patients can still have eye and skin issues from Graves’, even with normal thyroid levels.

Hopefully, you can get some answers on this!

[Kimberly]

in reply to: Angry about T4 treatment – Big pharma witholding the truth! #1184233

I have started a new “sticky” thread for the discussion of T3/T4 combination therapy, which will remain at the top of the forum for people to post their experiences. Please note the guidelines below.

This thread is for patients to share their *personal experiences* with T4-only therapy and T3/T4 combination therapy. Please note that telling another patient which medication they *should* be on is considered giving medical advice. This is a direct violation of the guidelines for this forum, which every participant on this forum reviewed and accepted prior to making their first post. Violators may be subject to moderation, suspension, or removal.

The GDATF’s staff and the members of our Board of Directors are committed to providing credible, evidence-based information. We follow with interest all research related to T3/T4 combination therapy, in particular, the emerging theory that patients with a specific genetic type might be predisposed to doing better on combination therapy.

In the last five years that I have been here, the GDATF has received not one cent from any pharma company that manufactures thyroid hormone replacement products. The Foundation actually has recently submitted a grant application to one pharma company for funding that would allow us to produce a special patient newsletter. Before the application was submitted, the issue was reviewed by our Board of Directors, who determined that funding could only be accepted if the Pharma company would have ZERO influence over the content of the newsletter.

I hope to see a lively discussion here, but please be sure that all posts adhere to the GDATF’s guidelines, which you can find in the “announcements” section at the top of the forum.

[Kimberly]

in reply to: RAI 30 years later #1184136

AndreaW wrote:

I really wish Kimberly that GDATF would be trying to keep us healthy and properly informed but with your financial support coming from big pharma, that would be a politically incorrect thing to do. You are dealing with the devil and keeping millions of people sick and mis-medicated. It is very sad, if not criminal, that our support groups are sabotaged by big pharma

The GDATF has received no funding from pharma in the 5 years that I have been here. However, we do currently have a grant application in to potentially fund a special patient newsletter. Our Board of Directors has been very involved in this and has stated that the only way we would accept the funding is if the pharma company has NO editorial control over the content.

[Author]

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