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#1 March 23, 2018 20:06:51

Kimberly
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Registered: 2008-10-14
Posts: 4040
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Newly diagnosed and treatment options

Hello - Graves' antibodies won't factor in to the dosing post thyroidectomy, as your dose of replacement hormone will be based on TSH and Free T4/T3. It might take a couple of follow-up visits before the dose is exactly right.

The one area where Graves' antibodies do come into play post-TT is for women who are pregnant. Antibody testing is recommended at around 20+ weeks to assess the potential risk of passing antibodies on to the fetus. This risk should be very low - as antibodies generally decline after thyroidectomy - but is something to be aware of.


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#2 March 24, 2018 14:45:29

mdpw715
Registered: 2018-03-10
Posts: 11
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Newly diagnosed and treatment options

Sorry, this is where I get a little confused and I'm going to ramble a bit here. I understand now the the Graves antibodies will not be a factor for the dosing but I'm wondering how to go forward to help control it or does Graves go completely dormant once there isn't a thyroid to attack? Since I (currently) have the antibodies for both Graves and Hashimoto's, what will I have after the thyroid is removed? I want to follow the most healthy way of eating to help with the autoimmune issue since there is no cure for this but the diets for Graves has a lot of contradictions to the Hashimoto's diet, i.e. Graves said to eat dairy , cruciferous veggies etc. while Hashimoto's said not to eat these. My Endo said that after the Thyroid is removed I can eat anything I want to without any restrictions…how does that help with the autoimmune side or again, do I even need to worry about that once the thyroid is gone? Don't want to sound like a whinny cry-baby, but how do you know what is the correct thing to do? I'm already going gluten free just because I feel better when I don't eat it. Am I over thinking this? Is this another anxiety issue from the Graves? I have finally heard from the surgeon but the soonest I can get in in May 10. It's going to be a long 6 1/2 weeks but it o.k. as long as I stay somewhat stable and also because he's the most highly recommended (most from personal and professional sources) surgeon for thyroid but I can't wait to get this part behind me!

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#3 March 24, 2018 17:28:35

Liz1967
Registered: 2014-02-25
Posts: 229
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Newly diagnosed and treatment options

Thyroid antibodies mainly attack thyroid tissue, rarely attack eyes or skin. If you have no thyroid, antibodies can circulate all they want but if they have nothing to attack, they do nothing more than your antibodies to polio or measles, etc, do. Once you have no thyroid, you have no thyroiditis and your antibodies go down. There will always be a chance these antibodies will mistake eye tissue for thyroid and cause the eye disease, but they no longer can affect anything else. If you do not have celiac or gluten intolerance, eat gluten. If you are not allergic to dairy or have lactose intolerance, eat dairy. In other words, with no thyroid, nothing you eat can affect what isnt there. You will be taking by pill the hormone produced by the thyroid. You will have to wait an hour after taking levothyroxine to eat and avoid calcium and magnesium supplements for several hours as they interfere with absorption. Other than that, resume your normal diet and activities. The main reason I got a thyroidectomy was I had no patience with worrying about diet, thyroid storm, methimazole side effects, thyroid cancer, frequent labs, etc. I felt focusing on Graves was giving it too much power. Once the diseased organ is gone, things settle down pretty quickly.

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#4 April 3, 2018 07:11:29

mdpw715
Registered: 2018-03-10
Posts: 11
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Newly diagnosed and treatment options

Thank you again Liz, I saw the surgeon yesterday since I have decided to go with the TT. This surgeon is highly recommended by both professionals and patient, has done over 1,500 so I'm comfortable with that plus he was very calm, gave us all the time we wanted and answered all the questions both my husband and I had. He actually suggested the RAI since it's less evasive but understood my issues with family history of cancers and increase in chance of cancers in people that have had RAI. Anyway, I'm scheduled for May 2. Today I have to start PTU since my levels were again dangerously high. They need to get them back in to the normal range before surgery to avoid complications. I'm very happy that the surgeon and my endocrinologist are working together to get this fixed. He (the surgeon) did paint the surgery and recovery a little more involved than some of the stories I've heard on this forum…1-3 nights in the hospital, approx 3 hours for surgery, increase in possible calcium issues since it's harder to dissect the parathyroids with Graves patients and a 2-4 week recovery time. I'm wondering if he's just painting the worst case scenario, did anyone else's doctor also say this? Which brings up another issue…has anyone had problems with their insurance covering a TT when they could have done the RAI?

Edited mdpw715 (April 3, 2018 13:05:17)

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#5 April 3, 2018 08:49:06

Liz1967
Registered: 2014-02-25
Posts: 229
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Newly diagnosed and treatment options

i went home a few hours after surgery, They check calcium levels and if okay, no reason to stay. My parathyroids remained intact and my recovery time was less than a week as far as how I felt. Surgery was 1.5 hours. My husband is an eye surgeon and one of his OR nurses scrubbed in so I know the info is correct. My insurance paid for all of it. I am hoping you are getting the worst case so you are pleasantly surprised! My surgery was really no big deal.

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#6 April 28, 2018 18:28:21

Ebv223
Registered: 2018-04-28
Posts: 1
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Newly diagnosed and treatment options

Kimberly
Concur 100% with Liz1967 that diet will NOT cure your Graves' - whatever website is claiming this is true is putting patients at extreme risk.

The first year after I was diagnosed, I went on an extremely restrictive diet (in addition to taking methimazole and having regular visits with my endocrinologist) - no gluten, soy, dairy, eggs, etc.. Quite frankly, the only thing the diet changes did for me was cause extreme stress! Other patients report that they do feel better with diet changes in conjunction with conventional medical treatment.

Eye problems can occur before thyroid dysfunction, after treatment, or not at all. If you have no symptoms, great, but this is just something to be aware of. For some patients, their first eye symptoms (swelling, grittiness, dryness) appear months or years later - and they end up getting misdiagnosed as having allergies!

Hi! This is my first time posting. In fact it’s my first time on this site. I’m wondering, Is it possible to have eye problems related to graves before the appearance of hyperthyroidism? Or even only have eye problems without symptoms of hyperthyroidism appearing at all? I ask bc I’m beginning the process of testing for graves’ but seem to only have manifested symptoms related to graves’ ophthalmology. I understand RAI can agrivate graves eye what are some of the suggested treatments for the eye itself? Is there a way to mitigate or reverse the bulging of the eye?

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#7 May 1, 2018 13:57:56

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4040
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Newly diagnosed and treatment options

Hello and welcome - yes, eye issues can appear either *before* thyroid dysfunction occurs or even years after treatment.

The approach right now is to wait until the disease enters the “cold” phase where symptoms are neither getting worse nor better. At that point, there are surgical options that can restore appearance. The exception is that if your vision is directly threatened, doctors can do emergency surgery to correct that ASAP.

There is currently a clinical trial going on for teprotumumab, which could provide a non-surgical treatment option. There have also been past trials of another drug called rituximab, which has yielded mixed results in thyroid eye disease.

You can also try steroid therapy (which of course, comes with risks and benefits), although the improvements are generally *not* permanent.



Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#8 May 5, 2018 11:12:25

mdpw715
Registered: 2018-03-10
Posts: 11
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Newly diagnosed and treatment options

Well, I had my thyroidectomy on Wednesday night, it lasted almost 4 hours, was told the thyroid was very sticky due to the Graves, 3 of the 4 parathyroids were left intact and one was transplanted to a muscle in my neck. I could have done home that night but since my surgery wasn't completed until almost 11:00p.m. (surgeon had 2 major emergency surgeries that bumped my 7:15 am time back), I decided to stay the night. No pain meds needed, was up walking around 2 hours later and home the next morning, no Tums, no pain meds just the antibiotics. Here's my question, it's now day 3 and I have a constant “tickle” in my throat that is causing me to cough… A LOT! did anyone else experience this? Nothing was mentioned about this so not sure if it's normal and don't really want to put a call in to the dr. on a Saturday. Surgery was very easy and so far, recovery is a snap!

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#9 May 5, 2018 17:46:36

Liz1967
Registered: 2014-02-25
Posts: 229
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Newly diagnosed and treatment options

I did not experience cough but I would call your surgeon, not because I think it is anything serious, but rather he can make you more comfortable. There should be someone on call for the practice who can help you out. It may be from the general anesthesia rather than the surgery. Dont feel bad about calling on a weekend. My husband is a surgeon and he would rather be called than have a problem with an easy solution turn into something more complicated because of a delay in seeking advice. Glad your surgery went well.

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#10 May 8, 2018 01:10:07

emmtee
From: Phoenix, AZ
Registered: 2011-10-26
Posts: 124
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Newly diagnosed and treatment options

I remember coughing a bit for a few days following my thyroidectomy. I think it was my body's way of clearing my lungs from the surgery, because occasionally I would cough up some phlegm. I assume it was due to irritation from the breathing tube. In any case, the coughing stopped after several days, once my lungs were clear.

Edited emmtee (May 8, 2018 01:10:38)

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