[hoganshelly]

#1059491

Hello—
I was diagnosed with GD this last August. Dx with TED directly after.
I had RAI on Aug 28. I am still extremely hyper and I was am currently scheduled for RAI x2 this month. However, my blood pressure has now shot up (and I have not ever had hyper blood pressure).
My eye dr wants to do OD urgently since I have desaturation in my left eye already. She says both eyes need to be done and is in the works. However, my endocronologist will not clear me to surgery due to my bp.
Endocronologist now wants to due a TT.
I have read that OD is not recommended for anyone in the “hot” phase. Why is that? Has anyone else had it done during this time?

I have no idea what to do. I am possibly looking at 3 surgeries in the near future and I am scared to death.

[Kimberly]

#1175075

Hello and welcome! This page from the International Thyroid Eye Disease Society does a nice job of explaining why doctors prefer to postpone surgery until the active phase is over. *However*, anytime your vision is directly threatened, doctors will override this general rule and make sure you get the surgical treatment that you need ASAP. We do have members here who have had OD in the active phase in order to preserve their vision. I believe that Shirley (snelsen) is one of them.

(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://thyroideyedisease.org/the-course-of-ted/

It sounds like your endo and eye doc need to speak directly to each other — and help you come up with a treatment plan to make sure you are getting both the hyperthyroidism and the eye issues addressed, while taking the BP issue into consideration.

For patients who have sight-threatening eye involvement, the latest guidance recommends anti-thyroid drugs (methimazole, Tapazole, PTU) or surgery as treatment options, due to concerns that RAI could make the eye issues worse. (You can find a link to this guidance in the “Treatment Options” thread in the announcements section at the top of the forum). This is probably why your doc is now recommending surgery instead of RAI. Has anyone discussed anti-thyroid drugs with you? All three options do have risks and benefits, but it’s important to understand as much as you can about all three choices. Take care!

[hoganshelly]

#1175076

Thank you for the response.
6 wks after the first round of RAI visiting my endo he did put me on Methimazole. However, I had a bad reaction to it. Muscle aches, fever, hives and rash. I was taken off of it immediatey and that is why the 2nd dose of RAI had been ordered.
I have also read that it can take up to 6 months to know if RAI is/has worked. It is common to still be so hyper 6 wks after RAI?
My eye dr and endo are communicating as well. I am on bp medicine currently, however my bp is still high. I also have a very high heart rate. BP averaging 145/90 jumping up to 162/95 and heart rate averaging 115 (as high as 148)
Is high bp a direct cause from the GD? I have not read a lot about that.
I am just concerned that I am in limbo. I haven’t been cleared by the endo for eye surgery as my eyes are getting worse by the day.
I am hoping to get some answers tomorrow from endo.

[catstuart7]

#1175077

Hugs to you Hoganshelly! It sounds like you are in a really intense difficult position. I have read about cases where RAI fails or is incomplete and the person resumes anti-thyroid drugs to get things under control. Just floating an idea, but what if your endo put you on methimazole to bring your thyroid levels down which would also reduce your bp and then you’d be safe for your OD? You can always deal with your thyroid down the line. Are you on a beta-blocker for your blood pressure now? I’m not a doc, I just read a lot…good luck!

[snelsen]

#1175078

Your eye situation is emergent, and serious.
I am wondering if the endo is thinking too narrowly, or not thinking well enough, about your BP/heart rate. Any way you can get to a cardiologist?
There are TONS of very acceptable meds that slow pulse rate and decrease BP.
I also suggest that if you can swing it, ask to meet an anesthesiologist who works with the surgeon. But the cardiologist suggestion is much better. Or, alternatively, ask you endo to refer you to an internist who manages fast heart rate and high BP for any reason.
Those are might thoughts.
As someone (me) who DID have optic neuropathy, and did almost lose her vision, in the active phase, there is a certain amount of urgency associated with this problem, to relieve the pressure on the optic nerve to save your vision. They have probably told you that constant and increasing pressure on your optic nerve can result in permanent blindness. So you should be watched very carefully, with Humphrey visual fields and all the other tests, and perhaps a very recent orbital CT.
Shirley

[gatorgirly]

#1175079

I know your question is about the OD, not the TT/second RAI, but…

It took six months (22 weeks, to be exactly) for my RAI dose to finally kick in. I would encourage you to talk to your physician about waiting until that six-month mark, as that is the “industry standard” for when a decision should be made about a second dose. It hasn’t even been three months for you if my math is correct. It may turn out in another three months, you’re still hyper and do need that second dose, but it’s your body and your thyroid to kill, so you may want to talk to your physician about why he is so eager to administer a second dose before giving the first one a chance to work. Or doing a TT – either way, both carry their own risks and hassles so why put your body through a possibly unnecessary treatment when the RAI may kick in a week later?

[hoganshelly]

#1175080

Here is a quick update. I had left eye OD on Friday. I am doing well. Biggest dissappointment right now is my double vision. It is really bad now. Eye dr says that is to be expected until my right eye is able to be done. To answer gatagori…I beleive since I am so hyper is the reason for the TT at this point. My endo changed my bp medicine and it is working much better.
As far as my OD….everything went well. I can definetly notice a difference even with swelling. There has not been any untolerable pain. The bruising is really starting to show up. I have a follow up with eye dr on Wendsday and then appt with surgeon the week after thanksgiving for TT.
Will the removal of the thyroid help stop the TED?
I am very concerned with the vision issues and working right now. I am an accountant and I must get back to work as soon as possible. I am trying not to rush it…
I do not understand everything that is going on nor the reasons for the dr decisions. I just believe that whatever they decide will be the best for me and my situations.

Thanks for listening….

[gatorgirly]

#1175081

Unfortunately, some people develop TED years (or even decades, like snelsen) after treating Graves’. You needed to get that under control for many reasons, but TED can rear its ugly head whenever it wants, regardless of whether or not your thyroid levels are stable, normal, etc.

I also noticed the bruising took a few days to get really prominent. I’m glad your pain is minimal. Mine was pretty bad but then again I had both eyes done and they went up my nose so there was a lot being shoved around and big tools in small places.

Make sure you look into FMLA. I took two full weeks off and then worked mornings only for the next two weeks before returning to full time. Even then, my eyes still tired easily and I found myself becoming easily distracted once the eye fatigue set in. Then again, you might find it easier since you only had one eye done, or worse since you have double vision (I never experienced any).

Good luck with the rest of your recovery. It is a long process but many of us on here have been there so you have our support and empathy.

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