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Hello and welcome – perhaps your fiance is related to Sir Robert Graves, an Irish physician who was one of the early researchers to describe the signs and symptoms of Graves’ disease!
Surgery corrects the *hyperthyroidism* due to Graves’ disease, but does not cure the underlying autoimmune issue, which is why you can still have eye issues after thyroidectomy.
Your ophthalmologist will likely run a number of simple tests to check your vision and assess how well your eye muscles are moving. He or she might also order a CT scan. This is a great overview of thyroid eye disease from University of Michigan Kellogg Eye Center
https://www.umkelloggeye.org/conditions-treatments/thyroid-eye-disease
Loss of vision is very, very rare these days with Graves’. If there is compression of the optic nerve, emergency decompression surgery can save your vision. (Changes in how you see colors are an early warning sign – for example something red like a Coke can starts to look more brown.)
Hopefully, you have a followup with your doctor within a few weeks of adjusting the dose of levothyroxine. Being hyper or hypo is a risk factor for thyroid eye disease. The other thing you can do on your own is to avoid smoking and second-hand smoke.
Wishing you all the best!
in reply to: Orbital Decompression #1185042Hello and welcome – Pricing is a real challenge for any procedure, as there can be huge swings between the insurer’s discount and the full price. Hopefully, someone who has had OD will be able to chime in here. Wishing you all the best!
in reply to: Mood Swing #1185589Hello – This video from Dr. Ira Lesser will hopefully shed some light behind the *why* of the mood issues. However, I’m not sure if any of us have figured out how to control them, other than making sure to keep up with meds and endocrinologist visits to ensure that levels stay in range!
in reply to: Change in medication #1185582Hello – I’ve not taken Cytomel (and am not a doc), but based on the prescribing info, it looks like the concern with older patients is with *overtreatment*.
You mentioned that you had weaned off over several weeks – maybe now you can sit down with your doctor and go over new labs – perhaps taking a look at Free T4 and T3 in addition to TSH to see where they are?
The fact that you had no issues just a few weeks ago, but are having symptoms now, is something that your doctor should take seriously!
in reply to: Graves Disease and hair loss #1185569Hello and welcome – We’re fellow patients here, so can’t give advice on medications. In general, the active ingredient should be the same between brand & generic and between different generic manufacturers. However, the absorption could potentially be different. In fact, the medical guidelines recommend followup testing after you switch brands, switch to generic, or switch generic manufacturers.
Hopefully, others here will chime in with their own experiences, but many patients do notice hair loss occurring when levels are swinging too high or too low.
in reply to: Thyroidoctomy after RAI ?? #1185575Hello – We are fellow patients here, not doctors, so can’t give medical advice. We’ve heard stories from some other patients who believed that they saw improvement in eye symptoms after thyroidectomy. And there was one study from University of Michigan that indicated patients who undergo thyroidectomy have less risk of eye involvement.
However, I don’t think anyone (including a doctor) can tell you for sure that thyroid surgery will address your eye issues.
Getting your thyroid levels stable is definitely important. Hopefully, your endocrinologist is working with you to find the right dose of replacement hormone that will keep your levels normal and stable.
Wishing you all the best.
in reply to: After Thyroidectomy #1185571Hello and welcome – you will hopefully get some responses here from those who have had a thyroidectomy, but you might also consider visiting the GDATF on Facebook and joining our closed group, as it tends to be more active than this forum.
https://www.facebook.com/GDATF/
Hope that all goes well at your appointment!
in reply to: Graves’ Has Destroyed My Life #1185563Hello – Sorry to hear you are going through this. We’re fellow patients here, so all I can suggest to you is to keep searching until you find a doctor who is willing to help you get your quality of life back by leaving no stone unturned – whether that is finding a connection with your Graves’ or finding another cause. Not sure where you are located, but perhaps a center that is known for comprehensive care – like Mayo or Cleveland Clinic might be better able to put all the puzzle pieces together.
Wishing you all the best – please keep fighting until you can get some answers!
in reply to: Going off methimazole expectations #1185496Hello – We don’t have a group specifically for friends/family members, but if you would like to reach out to info@gdatf.org, we can try to connect you with someone who is in a similar situation.
in reply to: Graves disease relationship & depression #1185560Hello and welcome – I’m sorry to hear that you are going through this, but glad that you found us.
The good news is that you *should* start to see improvement in your symptoms as your thyroid levels stabilize. Meds like carbimazole start working right away to block new thyroid hormone production, but your body still needs so rid itself of its extra stored hormone, which can take a few weeks.
Graves’ can definitely put a strain on family relationships and friendships. Any chance your partner would be willing to read the “Open Letter to Husbands of Graves'” bulletin that you referenced? This video below is also very enlightening.
https://www.youtube.com/watch?v=CB8_5rbCso8&t=1738s
It certainly seems unfair that your care during your partner’s illness isn’t being reciprocated. It’s much easier said than done, but it’s important to focus on YOU and regaining your health right now.
You might also consider joining the GDATF’s group on Facebook, as that tends to get a lot more activity than this forum.
Wishing you all the best.
in reply to: How to Support A Spouse With Graves? #1185558Hello and welcome – I’m sorry that you and your wife are going through this. Graves’ absolutely does put a strain on family relationships.
Stabilizing thyroid hormone levels can make a huge difference in terms of emotional swings – so hopefully, your wife is keeping up with regular doctor’s visits and with her daily regimen of taking medication.
Other than that, one suggestion would be to talk to your wife directly to see how you can best support her. Some patients *want* their family members to be closely involved with their treatment plan, while others would prefer to *not* have to discuss their Graves’!
Family counseling might also be helpful if your wife is willing to pursue this.
Some of the GDATF’s videos will hopefully be helpful to you; I especially suggest “The Emotional Aspects of Graves’ Disease” by Dr. Ira Lesser.
https://www.youtube.com/user/GravesAndThyroid/videos
Wishing you both all the best!
in reply to: Graves antibodies, TED and levothyroxine #1185554Hello and welcome – hopefully, those who have had RAI and also those who have been through eye surgery can address those specific questions.
(For those in the USA who are reading this, squint surgery = strabisumus surgery.)
There’s much that we don’t know about antibodies and how to get them to decrease. Yes, they can spike in the months following RAI, but they usually decrease over time. Some have theorized that antithyroid meds directly affect the antibodies; others researchers believe that getting the thyroid levels stabilized will affect the antibodies.
I totally get not feeling well and wanting relief – but definitely be careful with anyone trying to sell you products or services, especially if they are not a medical doctor!
in reply to: Going off methimazole expectations #1185494Hello – Both are antibody tests, but TSI measures stimulating antibodies only, while TRAb picks up all antibodies, both stimulating and blocking.
Can you go back and ask the doc for Free T4 and T3? The medical guidance from the American Thyroid Association notes that TSH can be unreliable as a benchmark early in the course of treatment. They don’t state this for sure – but I would *guess* this applies to going back on antithyroid meds for a second round!
Hello and welcome – hopefully, others here can chime in with their experiences. I do know that being hyper or hypo can affect the nails. Have your thyroid levels been normal and stable all this time? For patients who are stable and feeling well, TSH testing is the primary measure used for dosing of replacement hormone, but since you are having this issue, it might be worth checking out T4/T3 if it’s been a while.
As far as I know, nail issues are not listed as a side effect with Synthroid (assuming you are on the correct dose), but you could ask your doctor about potentially switching to another product. (Just make sure to re-test thyroid function in a few weeks to make sure the dose is correct.) Also, some people are sensitive to the color dye in Synthroid – another option might be to have your doc prescribe the dose without coloring and adjust your prescription accordingly.
in reply to: Orbital Decompression #1185039Hello – I’ve not had an OD, but we’ve heard many success stories from patients who have. Having an experienced surgeon who has taken the time to go over the risks & benefits with you is key.
You might also be interested in joining our closed Facebook group for some additional feedback, as that group has more activity than this one. From the main FB Page, you can click Visit/Join Group.
https://www.facebook.com/GDATF/
Wishing you all the best!
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