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in reply to: GD with TED #1184519
Hello and welcome!
Rituximab is considered an experimental therapy for TED. One study overseas showed great results, but another study in the U.S. did not show improvement. Researchers are still trying to figure out the reason for the differing results, although the U.S. group was in general older, had higher antibody levels, and did not get diagnosed as quickly.
There are cases where patients with Hashimoto’s thyroiditis (which causes hypothyroidism) end up getting diagnosed with Graves’ disease years later. In other cases, patients with Graves’ disease can end up flipping hypo.
In terms of deciding whether the disease is stable, some doctors rely on antibody tests (like TSI), but in most cases, doctors will rely on whether your double vision is improving, worsening, or stable. Doctors like to see a few months of stability before doing surgery, as they don’t want to put you through a second surgery if the eyes change again.
TSH is a substance produced by the pituitary gland that either directs the thyroid gland to produce more hormone or to put the brakes on thyroid hormone production. The amount of TSH produced generally depends on a “feedback loop” according to where our thyroid hormone levels (T3 and T4) are. When T3/T4 are too high (hypER) the pituitary shuts down production of TSH to try and tell the thyroid to stop producing extra hormone. When T3/T4 are too low (hypO) the pituitary cranks out TSH to get the thyroid to produce MORE thyroid hormone. (With Graves’, the feedback loop can be interrupted, with TSH staying suppressed, even though T3/T4 are in the “normal” range.) Although thyroid eye disease can occur at any time – even with no thyroid dysfunction or years after treatment – being hyper or hypo does increase the risk of eye issues. So this is why your doctor is running blood tests – and hopefully he/she is working with you on getting your levels balanced.
You might be interested in checking out the GDATF’s videos on YouTube, as there is a lot of great information on thyroid eye disease presented by experts in the field:
(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).https://www.youtube.com/user/GravesAndThyroid/videos
You might also check out the “Men With Graves’ and TED” thread towards the top of the forum.
Take care!
in reply to: Is it normal to alternate dosage like this? #1184511Block & Replace is definitely not the standard of care in the U.S., although it *is* sometimes used for cases where patients (particularly children) are having difficulty getting stabilized on anti-thyroid meds.
There was a study out of Asia many years ago that indicated higher remission rates with B&R, but it was never replicated in other parts of the world – and there is concern about the potential risk of side effects that comes with using a larger dose of anti-thyroid meds.
Alternating doses is very common. I think the trick is to find a routine that will work for you to remember the days with different doses, so that might be why your doc recommended the weekend days.
Towards the end of my time on methimazole, I was taking a small dose on Mondays and Fridays only.
in reply to: Functioning with Graves- the new normal… #1184500Great info – thanks for sharing your story!
One note about diet is that there is a LOT of conflicting information out there. We’ve heard from patients who have done paleo, vegan, anti-inflammatory, low iodine, and eliminating food sensitivities based on testing. At this point, there isn’t any good research to show that one of these is more effective for Graves’ than the others. Of course, focusing on nutrient-dense whole foods and cutting down on processed foods with unpronounceable ingredients is always a good thing!
in reply to: On Week 12 and very discouraged #1184486Hello – I know from personal experience that the weight issues are VERY frustrating. However, your #1 priority right now is to get your thyroid levels back in balance. If it’s been a few weeks since you’ve had labs, it would be worth having this done just to see if the dose needs to be tweaked again. However, I would not recommend arbitrarily lowering the dose because of weight gain.
Weight issues are very individual – many patients struggle with excess weight gain, some struggle with having too much weight loss, and others have no issues at all. Also, keep in mind that if you lost an unhealthy amount of weight before diagnosis, the weight gain is actually a sign that you are getting back on the path to good health.
in reply to: TSI – Thyroid Stimulating Immunoglobulins Levels #1184466Hello – The antibodies have a fairly long “shelf life”, so my own doc only checks them every few months. Those who are waiting to get cleared for eye surgery, though, might go through more frequent testing.
in reply to: TSI – Thyroid Stimulating Immunoglobulins Levels #1184464Hello – It’s not well understood why antibody levels can fluctuate, with a few exceptions. Antibody levels can spike significantly after RAI treatment for hyperthyroidism. The can also decline during pregnancy and increase during the postpartum period.
I’ve also read that perhaps the stabilization of thyroid levels in itself can reduce antibodies – so perhaps it’s the fact that your wife went slightly hypo that had an impact.
http://www.ncbi.nlm.nih.gov/pubmed/17132745
Some eye docs will use TSI to determine when a patient is a candidate for surgery, but others don’t use TSI at all – they will instead rely more on documentation of whether signs/symptoms are changing over time, or whether they are stable.
in reply to: Newly diagnosed and confused #1184469Hello and welcome – a couple of thoughts…
I don’t think I have EVER heard of a patient being asked to choose a treatment option over the phone. This is a major decision. You can check out the “Treatment Options” thread in the announcements section at the beginning of the forum for more info on anti-thyroid meds, surgery, and RAI. You might also consider a second opinion, as your relationship with your endo’s office is going to be a fairly long-term one!
When you are looking at your labs, you need to know the “normal” range for your lab. TSH is usually pretty standard, but the normal range for other results can vary from lab to lab.
If your T3/T4 are in the “normal” range, this is referred to as subclinical hyperthyroidism – treatment for that is often “watch and wait” to see if the T3/T4 go out of whack as well.
If your T3/T4 are too high, you definitely do want treatment. Even though you are feeling well now, over time, untreated hyperthyroidism can result in muscle wasting, bone loss, and a very serious complication called thyroid storm.
You can use the “Search Posts” feature on this forum to read stories from patients who have chosen different treatment options. I took anti-thyroid medications for 7 years, followed by about 18 months of no meds, and now I am hypOthyroid. Others here have opted for RAI or surgery. With RAI/surgery, you do NOT get a chance to change your mind after the fact, so it is a big decision. NOT one that you want to make over the phone!
in reply to: Confused about blood test No thyroid #1184461Hello – TSH that is out of range on the low side is associated with hypERthyroidism. If TSH is low, but T3/T4 are normal, that is referred to as “subclinical hyperthyroidism”. So the doc is reducing your meds to try and get the TSH back up into the normal range.
Subclinical hyper can be associated with an increased risk of bone loss and heart issues, so that is why docs will recommend a reduction in meds if they see the TSH drop out of range low. Of course, your doc should be taking your symptoms into account as well.
We hear mixed reviews from patients who try combination T3/T4 therapy. Some believe it did improve their quality of life, while others found that it brought back their old hypER symptoms.
Hello – I was very sensitive to changes in dose with methimazole; there were times that I was on one dose 2 days a week and a different dose 5 days a week!
The Block & Replace involves trial and error as well, although it’s usually the dose of replacement hormone that is getting tweaked, rather than the methimazole.
I’ve not seen any research that ties eye issues to B&R. However, keep in mind that with the higher doses of methimazole involved in B&R, you increase the risk of severe side effects.
in reply to: Full thyroid removal after five years with TED? #1184448@liz1967 & bllucas – Patients with Graves’ can still go hypo, even without RAI or thyroidectomy. I’ve been on replacement hormone for about 6 months now after 7 years on methimazole and then 1.5 years euthyroid with no meds.
In some cases, the antibodies that cause Graves’ can start *blocking* thyroid hormone production instead of stimulating too much thyroid hormone production. In other cases, patients actually have both Graves’ disease and Hashimoto’s thyroiditis.
Although I haven’t seen any formal research on this, I’ve read a few anecdotal stories about Armour causing flare-ups of hypER symptoms for Graves’ patients. So if you are one of those patients who doesn’t do well on T4-only therapy, you might talk to your doc about switching to Cytomel, which is a synthetic form of T3, to see if that makes a difference with your TSI numbers.
in reply to: Full thyroid removal after five years with TED? #1184447@ldubard – Hives can be a reaction to anti-thyroid medications, but in other cases, the skin reaction is actually caused by the hyperthyroidism itself and will resolve once thyroid levels are stabilized.
Of course, if you aren’t happy on the meds, it is *your* choice to pursue RAI or thyroidectomy. Just make sure that you do your research and understand the risks and benefits of all the options. The “Treatment Options” thread in the announcements section of the forum is a good place to start.
Hello – How did you do on the alternating days? Could you try splitting pills so that you were getting the exact same dose every day? Splitting a 5 mg tablet in two is easy with an inexpensive pill splitter. You can also split a 5 mg tab into fourths, although that is a little trickier!
Being hyper or hypo can increase the risk of eye issues, so it’s possible that you didn’t have the right ratio of “block” vs. “replace”.
in reply to: can’t decide- IV steroids or oral #1184420Hello and welcome – Hopefully, those who have had steroid therapy for TED will respond; in the meantime, this link from the International Thyroid Eye Disease Society will hopefully be of interest:
(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).
in reply to: Natural Alternatives #1184418Hello – I am running out the door to lead a support group meeting, but please check out the “Treatment Options” thread in the announcements section of the forum for the GDATF’s stance on alternative treatment options.
This is a difficult situation, but for me, if I knew I was heading hyperthyroid, I would try to exhaust all options before waiting – for example, asking if you can get a discount for cash payment of labs/office visit or trying to get a short-term insurance policy until your benefits kick in. You might also visit the hrsa.gov website to find free and low-cost clinics near you.
Take care!
in reply to: Terrified of Graves #1184161Hello – The ATA did move some stuff around, but that link used to direct to the new location. I will check this out in the a.m., but in the meantime, try this one:
http://online.liebertpub.com/doi/pdf/10.1089/thy.2010.0417
Here is the new page for all the ATA guidelines:
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