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#1 March 10, 2018 05:43:35

Susannpenska
Registered: 2018-03-10
Posts: 1
Profile  

I don’t want to wait and see.

I am a 56 yo female diagnosed with Graves about 4 months ago. I was told to take Methamazole low dose for up to 18 months and “ wait and see” if my levels get better. I have had slight symptom improvement and am coming up on my first blood check. My symptoms do remain significant, especially weakness, high heart rate, thigh muscle pain, anxiety, insomnia. I have gained weight almost 30 pounds, I usually exercise but find it hard to do anything more than a walk, I get short of breath . My hands tremor , can’t drink coffee at all. I lost my job of 10 years ( laid off for restructuring) not because of call offs or anything but I do think my anxiety made me more aggressive at work and no one was sad to see me go lol!
My question is , is the 18 month struggle I may face worth it? My endo said I may have a 50/50 chance to reverse hyper with meds, would it be better to just have my thyroid inactivated and deal with hypothyroid with medication? I have heard that this is easier with more control over symptoms, is that true? Or is it worth the wait to see if my medication will eventually cure this? I need to look for a new job but hate to go into the stress of that until I feel better . I can’t wait 18 months to figure it out though.

So in anyone’s experience IS it worth it to “ wait and see”

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#2 March 12, 2018 10:01:00

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4048
Profile  

I don’t want to wait and see.

Hello and welcome - we're fellow patients here and can't tell you what the right course of action for YOU is, but here are a few notes…

1. The American Thyroid Association recommends testing levels 2-6 *weeks* after starting methimazole. It would be very unusual to wait 4 months for your first test! Most patients go through several visits after starting the methimazole, each a few weeks apart, to get their levels checked and to have the doctor tweak the dose as needed.

2. The idea with the 18 months is that this is a *guideline* timeframe (not a hard and fast rule) to see if your body has gone into remission on the medications. You should NOT have to go for 18 months with your levels out of whack and feeling terrible!

3. Many here have had success with RAI and surgery (and hopefully, they will chime in with their stories). However, keep in mind that you do NOT get a chance to change your mind after getting treatment with one of these choices - so that is one benefit of the “wait and see” approach with methimazole!


Kimberly
GDATF Forum Facilitator

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

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#3 March 12, 2018 10:30:09

AzGravesGuy
From: Peoria, AZ
Registered: 2012-08-07
Posts: 155
Profile  

I don’t want to wait and see.

In my opinion, given my experience, I would not wait and see.

I am a strong supporter of the Total Thyroidectomy as a treatment option.

I had both RAI, which failed (thank you wait and see approach) and then a thyroidectomy which actually saved my future.

Get your levels managed on Methimazole and then start booking the surgery consults.

Your body is attacking itself. Remove the thyroid and the systemic inflammation ends that day.

It’s permanent, manageable, short down time, and the crazy stops really fast.

Get your life back, get a TT.

My opinion.

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#4 March 12, 2018 12:47:47

Liz1967
Registered: 2014-02-25
Posts: 239
Profile  

I don’t want to wait and see.

I agree with AZGravesGuy. I had TT after 6 months on methimazole. Easy surgery, back to feeling like I did preGraves right away. No problems at all with levothyroxine. No regrets at all after five years. I had zero patience with feeling bad and messing around with frequent labs, changing doses, drug side effects, etc experienced on methimazole. I feel good, have been on same dose for years and get TSH yearly. Take one pill every morning and that’s about it! If you go this route, just be sure your surgeon does a lot of TTs so it is all removed.

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#5 March 13, 2018 01:15:22

emmtee
From: Phoenix, AZ
Registered: 2011-10-26
Posts: 134
Profile  

I don’t want to wait and see.

Just to clarify - You might go into remission on methimazole, but there's no actual “cure.” Even if you were to achieve remission, the disease could become active again later on.

How is your insurance? That may be a big factor in your decision. If you still have employer coverage and can get them to cover TT or RAI, then I don't think I'd wait.

I took methimazole for 4 years and actually did pretty well on it, but I eventually had a TT due to a large nodule. I wish I'd had my TT sooner for the simple reason that my nodule would have been smaller and it would have been an easier surgery. (My nodule was so large, it was actually bigger than my thyroid). On the other hand, I had an excellent surgeon who wasn't available until right before my nodule was discovered, so who knows? I'm very happy with my TT - no complications and no regrets. It would have been my choice eventually anyway.

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#6 March 13, 2018 20:58:16

barbra
From: Hagerstown, MD.
Registered: 2013-05-23
Posts: 157
Profile  

I don’t want to wait and see.

I was diagnosed in 2013, had RAI and later developed some nodules. Due to interference with breathing and sleeping it was decided, in August last year, that a total thyroidectomy was needed. After one overnight stay in the hospital,very little pain and no complications I am back to my old self. The scar has all but disappeared. I see the endocrinologist once a year and I am finally stable and the long misery is behind me.
I just wish my doctorI had told me about the surgery in 2013.

Best of luck to you with whatever you decide.
Hugs.

Barbra.


I'm a little wounded, but I am not slain; I will lay me down for to bleed awhile. Then I will rise and fight with you again.
J. Dryden

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#7 March 13, 2018 21:00:08

debill1979
Registered: 2018-03-13
Posts: 2
Profile  

I don’t want to wait and see.

I tried methimazole for about a year. In the meantime I developed eye symptoms. Due to the eye symptoms RAI was not an option so I had TT. Easy surgery and a God Send as pallipary carcinoma was found. As I was not in the high risk group , no cancer in my family, non smoker, etc it was a surprise to everyone. Either way you will most likely be on medicine the rest of your life. The adjustment to synthriod is much easier than the ups and downs I experienced with methimazle. Good luck and hang in there.

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