[mwhitney]

#1059795

I was diagnosed a few weeks ago.
In the beginning it was high BPM – 140 normally with a high of 171 (which scared me to death) I have low blood pressure from a SCI to begin with and take meds to raise it. The BPM is now, down under 100 where it should be again.

My endo put me Methimazole 5mg twice a day. It’s been a few weeks.
Since starting it- I’ve had multiple slasher types of nightmares. Which I’ve loosely heard the Methimazole can cause.
I’ve also had some fun personality changes- which I can only describe as having the happy drained out. The fun is gone. I’m left with this grumpy, irritable who cares, apathetic , blank sort of thing. I’m not depressed or having anxiety or anything, there’s literally nothing.

I’m guessing it’s probably going to stay like this, I’m not going to do 6 months of this, no way. I already live with debilitating chronic pain.

I was searching around for my option for TT, I found a guy over at a university near my who does a robotic surgery, where they go in under and arm and remove it. They never have to cut through the neck. Which sounds like a better idea for me, because I also have cervical dystonia (spasmodic torticollis) in my neck and cutting dystonic muscles have a risk of spreading the dystonia by disrupting muscle fibers. The graves has already made my condition worse, which I don’t love either.

I guess I’m adding to the collection of others who’ve already had it. As soon as my numbers come down, this thing is coming out.

urgh. I’d really like to feel emotion again. And stop with these nightmares.

[Naisly]

#1177646

It takes time for your body to recover. 3weeks is not enough time. It does take a bit of time for the stored hormone to leave.

Yes, the happy will return and the nightmares will go away once your levels are stable. I will note that when I am hypo, I too feel this way – My point is, perhaps it is time to have your levels checked, you may be heading into hypo.

Also, I think Kimberly will chime in here, but from what I have read, the robotic surgery isn’t that good since there is a higher chance your vocal cards and parathyroids can be damaged.

[mslux]

#1177647

Hello MWhitney,

That all sounds beyond awful. I really hear you. I would also say it’s very early yet to consider having surgery and that carbimazole, a different anti-thyroid drug may suit you better, but it’s still very early and you may just be feeling very sad and slightly numb so soon after diagnosis.
It is a shock and whilst already dealing with chronic pain and other conditions, it sucks – but you have options and choices.
There are some very knowledgeable people online and some very good resources. It is scary and frightening but you are in a much stronger place now that you know what you’re dealing with.
Nightmares are often med related but also can be related to feelings of distress around health.
Your post is very honest and I’m glad you bothered to write it.

In solidarity,
Ms Lux X

[mwhitney]

#1177648

Thanks, I’m trying to hang in there. It’s hard when you’ve got multi layer problems all going at once.

I was also wonder is there a rate of problems with the face? with the meds or the disease it’s self.

Last week I had a hemi-facial spasm, which I’ve never had, it was like someone split my face down the middle. It was awful. And lasted 3 hours. Tugging at my eye and cheeks and jaw, I was pretty much screaming.This was the left side of my face.
This week the right side of my face is swollen.

And I’m starting to feel nauseous and sick like I was before my symptoms were controlled.

[Kimberly]

#1177649

Hello – Please hang in there! Methimazole starts working right away to block production of *new* thyroid hormone, but you might continue to have symptoms until your body burns off its existing stores of excess thyroid hormone, which can typically take a few weeks.

Personally, I felt my worst in the first few weeks after I started on Methimazole as my levels were falling. Things started to improve once my levels started moving back into the “normal” range.

Hopefully, you have an appointment scheduled soon to have follow up labs done. Dosing with Methimazole is part art, part science – so it’s common to need some tweaking to your doseage early in the process.

I would definitely have a doctor check out the issue with the facial spasms.

As Naisly mentioned, we’ve had contact with three different thyroid surgeons in the last 18 months or so who were not fans of robotic thyroid surgery. The concern is that you are actually cutting through *more* tissue to get to the thyroid and that the process currently is associated with a higher rate of complications than traditional surgery. In 2011, the FDA actually withdrew its clearance for using the Da Vinci robot for thyroid surgery, and the manufacturer of the device stopped supporting its use for thyroid surgery. We have several members here who have been happy with their choice of surgery as a treatment option; however, I don’t think we have anyone here who had the robotic procedure done.

Take care – hope that you can get some relief soon!

[mwhitney]

#1177650

I’m calling my endo. tomorrow. I think I’ve got to be allergic to the Methimazole. My face just keeps getting more swollen, and is starting to get red and blotchy. Plus it’s making me feel terrible, I’m just apathetic or rage. I’m at 5 weeks on it.

I’m going to make her try something else. I’ve tried cutting it down by a half at night, (the nightmares have stopped ) but the swelling just isn’t going away, it’s staying the same. I can’t take it anymore.

I’ll know more tomorrow.

Thanks everyone!

[Kimberly]

#1177651

Hello – Yes, definitely a good idea to get an expert opinion! For patients who are determined to have “minor” reactions to Methimazole, the latest medical guidance notes that switching to PTU is an option, although Methimazole is the preferred drug due to its better safety track record with liver issues. Your doctor will be able to help you sort through next steps. Keep us posted!

[mwhitney]

#1177652

Just got a call back from my endo’s office.
She said to stop taking it and wants me to come in tomorrow.

Feeling better about that, hopefully we can find another option.
Swelling in my face is never a good reaction for me, it’s better than it was yesterday but it’s still pushing on my eye.

[mwhitney]

#1177653

I saw my endo. today, while I was expecting to be placed on another medication, that did not happen.
Apparently the swelling in my face and my already painful lymph nodes aren’t a normal reaction, or side effect. So that doesn’t make me a candidate for more medication.

I had to make a decision today since I can’t let it just rebound again, so I decided to go with the RAI. Both of my options are scary and I don’t like either of them. But I really thought I’d have more than 5 weeks to mull the options over and maybe talk to a surgeon or something, didn’t even make it to my 6 week blood test.
I’m going in on april 15th (it was the soonest they had), to start it, I was able to call the hospital and pick the nuclear neuroscience physicist’s brain and ask questions about things, which was really nice.

He was able to tell me some things like the half life of the RAI is 8 hours, so every 8 hours the radiation lessen’s by half. And that the RAI and surgery both have the same results, I didn’t know that the body eventually pushes out the remaining thyroid tissue over time, that the radiation kills- so eventually if it works properly the thyroid is removed either way.

science. weird.

[linzyyyy]

#1177654

Hi! I know a lot of people on here seem to be scared about RAI but I wanted to let you know I had mine in November, I went hypo in 8 weeks, I’m on Synthroid now and feeling SO much better! Good luck

[Kimberly]

#1177655

Hello – Wow, I’m sorry to hear that you had to make such a quick decision, but it sounds like you have surrounded yourself with a knowledgeable medical team.

One issue you might check prior to the 15th is that for patients with active eye involvement or patients who are smokers, some docs might recommend a course of steroid therapy to reduce the risk of eye complications. (Obviously, steroid therapy has risks and benefits that need to be discussed in advance with a doctor.)

Wishing you all the best!

[lam64]

#1177656

Hi Whitney, Kimberly, and Naisly,

I wanted to respond to the concerns with the robotic surgery.

I actually received a robotic total thyroidectomy yesterday. My surgery was completed in one hour. I had absolutely no surgical complications. Both of my RLN’s and all four parathyroids are intact. My calcium levels were perfectly normal as of this morning and I am recovering at home.

It is true that the FDA and Davinci company do not approve of the procedure. However, if you read the articles/reviews the main reason is because it is not cost effective. The cost is incurred by the hospital; not the patient. If the hospital already has the robot; I feel there is nothing wrong with utilizing their resources.

However, the absolute ONLY benefit in having a robotic thyroidectomy is cosmetic (no neck scar).

When it comes to complications, I feel that the skill of the surgeon is the number one factor. Which is why research is key! In my particular situation, my surgeon’s percentages of complications (he knows them; as any surgeon SHOULD) were equivalent between the robotic surgery and the traditional surgery. (Both being extremely low).

It is true that they are cutting through more tissue and I must say I do believe that this procedure is probably more painful than the traditional method. I am having pain in my neck and collar bone area. With that being said, it is bearable and I have a full range of motion in my neck/shoulder/arm 24 hours post-op. My actual incision (on the edge of my armpit) is Not painful.

I would be happy to update anyone on my recovery as it unfolds.

I Also would like to stress that I do not think this surgery is ideal for everyone. I do however feel that this surgery was ideal for me. I am very pleased to have no visible scar and NO SURGICAL complications.

I personally believe that this procedure should not be immediately thrown out as a treatment option. I feel that the absolute most important thing when considering surgery is the skill of YOUR surgeon.

Kimberly wrote:

As Naisly mentioned, we’ve had contact with three different thyroid surgeons in the last 18 months or so who were not fans of robotic thyroid surgery. The concern is that you are actually cutting through *more* tissue to get to the thyroid and that the process currently is associated with a higher rate of complications than traditional surgery. In 2011, the FDA actually withdrew its clearance for using the Da Vinci robot for thyroid surgery, and the manufacturer of the device stopped supporting its use for thyroid surgery. We have several members here who have been happy with their choice of surgery as a treatment option; however, I don’t think we have anyone here who had the robotic procedure done.

Take care – hope that you can get some relief soon!

[mwhitney]

#1177657

I ran out of time to explore my options very early.
So I didn’t have time to talk to surgeons about my personal complications to begin with, and discuss the robotic surgery with anyone unfortunately.

I had to make a snap decision to do RAI a few weeks ago. I did the RAI two weeks ago, it went really good, I didn’t even have any problems or even side effects with it. Which I was really surprised.

I’m glad to hear that someone else liked the idea of the robotic surgery and had no complications with it. Thanks you for letting me know about your experience with it.

If I had more time to explore it, it’s probably the surgical route I would have gone with.

[gerical]

#1177658

Mwhitney, sorry to hear you have had such a rough course. One thing I have to say from reading all these posts is that there is so much “strength” in your stories. I feel that when I read what everyone is going through. I too feel like I am a strong person but some days I feel so defeated! HAte showing that other side of me to the people around me. Sometimes I think they feel I am crazy because it is so out of character for me, this sometimes anxious, weepy, down in the dumps person is not what they are used to.

I keep hearing a lot about the RAI treatment. Is this generally something someone does early on or do you try and simmer down the graves and live with it on the ATD’s for awhile? Has anyone had problems with their liver or white count from the drugs?

[Kimberly]

#1177659

gerical wrote:

I keep hearing a lot about the RAI treatment. Is this generally something someone does early on or do you try and simmer down the graves and live with it on the ATD’s for awhile? Has anyone had problems with their liver or white count from the drugs?

Hello – This is an individual decision. Some doctors will do RAI right out of the gate, while others believe that it’s preferable to get levels down with ATDs prior to treatment. The latest medical guidance (which you can find in the “Treatment Options” thread) generally recommends a 12-18 month course of anti-thyroid drugs, *but* leaves the door open for longer-term use for patients who prefer that approach.

We do have members here who have had liver and/or WBC issues on anti-thyroid drugs. Fortunately, these complications are rare, but any suspicious symptoms should be reported to your doctor ASAP. (Liver – fever, loss of appetite, nausea, vomiting, tiredness, itchiness, dark colored urine, or yellowing of the skin or eyes; WBC – sore throat, fever).

Hope this helps!

[Author]

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