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#1 March 13, 2012 17:18:47

snelsen
From: Seattle, Wa.
Registered: 2010-01-01
Posts: 1762
Profile  

Wife want divorce and family in shambles

did the doctor mention the other ATD to consider her taking? I am curious, was the doctor checking her liver labs when she was on this drug? It is definitely what should be done along withe the thyroid labs when first beginning an ATD. Was it the endocrinologist who saw her when she was sick, or another doc?
Anyway, I am very glad that this was discovered. Her WBC will most likely recover pretty fast now that she is off the drug.

There is ANOTHER ATD, called propylthiouracil, or PTU for short. That is the ATD I took when I was first diagnosed. Did he mention putting her on that drug? However, her WBC should recover first before going on that drug. So maybe the best you and she can hope for, is to tough it out (with increasing hyper symptoms.) and have the rest of her recover. I am glad the RAI is very soon. The sooner, the better, that is for sure!

There is a ton of information from patients on this site about their experience with RAI. I cannot remember which facilitator wrote a very nice piece on what to expect. Unfortunately, the RAI does not have immediate effects, but it does work. I think Ski and Bobbi both had RAI. And there have been very recent posts about it.

It is nice to hear some good news from you, albeit, mixed. Because Graves' has altered your life and the life of your family in a terrible way. I feel very optimistic that this too will pass, but I think we will be hearing from you many more times. Is your wife interested in joining the site?

shirley


TED 2008-present. OD for pressure on optic nerve 02/02/10
Eye muscle surgery 09/23/10 Upper eyelid surgery 02/01/11
Lower eyelids with grafts from palate, 10/5, 10/25/11
Graves dx/thyroidectomy 1959-Synthroid from 1980

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#2 March 14, 2012 10:49:40

Kimberly
Online Facilitator
From: Phoenix, AZ
Registered: 2008-10-14
Posts: 3511
Profile  

Wife want divorce and family in shambles

Hello - it takes varying amounts of time (one recent article says 6-18 weeks) for RAI to do its work in destroying the thyroid gland. Once your wife does go hypo after RAI, your doc will make his/her best estimate at what the initial dosage of replacement hormone should be, based on factors such as weight and age. Then she will have a follow up set of labs done in 4-6 weeks to determine if that is the correct dose for you. It *does* take several weeks before you know if that is the right dose, because it takes some time for thyroid hormone levels to build up in the body – and it might take a few iterations before she finds the “sweet spot” that stabilizes her levels and gets her to feeling well again.

A couple of other quick notes on RAI. First, if your wife has eye involvement, she might want to get input from an ophthalmologist prior to proceeding with the RAI treatment. The latest guidelines from the American Association of Clinical Endocrinologists and the American Thyroid Association note that RAI is a “risk factor” for development or worsening of the eye disease and recommends steroid therapy in conjunction with RAI for certain patients. Also, make sure that after RAI, your wife’s doctor is using Free T4 and T3 and *not* TSH to make the decision when to start her on replacement hormone. TSH can remain suppressed for quite some time and is not a good benchmark for dosing decisions early in the process.

As for switching to the other med, the latest AACE/ATA guidelines note that this is an option for “mild” side effects, but not for “serious” side effects. There is a condition called agranulocytosis that is very serious and results in a severely depleted WBC count, so I don’t know if that is what your wife was dealing with. Your wife’s medical team should be able to provide some additional guidance on whether switching to PTU might be an option.

Ultimately, none of the treatment options provides a “quick fix”, but hopefully, your wife will start to see some relief – and you and your family can begin the healing process.


Kimberly
GDATF Forum Facilitator

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

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#3 March 14, 2012 22:46:50

emmtee
From: Phoenix, AZ
Registered: 2011-10-26
Posts: 60
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Wife want divorce and family in shambles

I'm so sorry your wife isn't able to stay on the methimazole, but at least you were able to see some improvement before the serious side effects appeared. Now it's clear that her disease is the source of her unhappiness, and even though the treatment will take a while, at least there is a treatment. Please keep us updated. I wish you both the best.

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#4 March 15, 2012 09:39:03

bobkatak
From: Minot, ND
Registered: 2012-01-30
Posts: 12
Profile  

Wife want divorce and family in shambles

Thanks for the reply from all. My wifes endo discovered the low WBC at her scheduled appointment to see how the methimazole was working so he was watching her liver. Also he said he did not want to put her on PTU because that could be more damaging to her liver so her only options were RAI or surgery. I like the idea of RAI since it will be a more permanent cure and she wasnt always consistently taking her methimazole as it was. The endo seems pretty good and she has another appointment with him four weeks after the RAI so he is watching her pretty close and he has always checked FT3, FT4, and TSH. I have done a lot of research so he seems to talk to me more than her so she brings me along to interpret.

Her anger and rage symptoms are back, this morning my daughter and wife got into a huge argument and arent talking again but at least I see light at the end of the tunnel, only 5 more days until her RAI. I did try to find out what her dose was going to be but they didnt know yet, the endo said probably around 15mCi, I hope that is enough I cant imagine going through six more months of this waiting for another dose. She is back to saying there is nothing wrong with her and she feels great right now so I just hope she goes through with it.

She does not have any eye problems as of right now and hopefully wont. She 3wont have anything to do with this web sight or even researching what it is doing to her but I keep trying to talk to her every chance I get.

Thanks again for the responses and all the support, I will continue to keep updating.

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#5 March 15, 2012 09:51:46

Kimberly
Online Facilitator
From: Phoenix, AZ
Registered: 2008-10-14
Posts: 3511
Profile  

Wife want divorce and family in shambles

Hello - Thanks for the update.

Just a quick note on consistency in taking meds. If your wife hasn't been consistent in taking the methimazole, that absolutely impacts the effectiveness of this form of treatment.

However, after RAI or surgery, keep in mind that your wife will need to take thyroid hormone replacement for life. She will not only need to be *consistent* with taking those meds, but there are specific guidelines that must be followed (spacing the meds apart from food and specific supplements) in order for the meds to do their job.

There are lots of different reminder systems that patients use, ranging from timers/beepers to putting the meds in a place where they will see them first thing in the morning. It will be really important for your wife to find a routine that works for her.

Take care!


Kimberly
GDATF Forum Facilitator

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

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#6 March 22, 2012 14:26:31

bobkatak
From: Minot, ND
Registered: 2012-01-30
Posts: 12
Profile  

Wife want divorce and family in shambles

Just a quick update, wife went through with the RAI, she was given 25 mci which i thought was kind of high but maybe not since her RAU was only slightly elevated at 30% and she cant take ATDs is why they went that high. I would rather they went on the high side vs the low side anyway. Hopefully it wont take three months for her symptoms to improve, I have read it can take one to three months and I dont think the family will survive three more months. I will continue to update as she hopefully improves. Thanks for listening.

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#7 March 22, 2012 20:05:53

Kimberly
Online Facilitator
From: Phoenix, AZ
Registered: 2008-10-14
Posts: 3511
Profile  

Wife want divorce and family in shambles

Thanks for the update – definitely keep us posted on how everyone is doing.

Just a quick reminder to make sure that your wife's doctor is checking Free T4 and T3 in order to determine when she needs to start on replacement hormone. TSH can remain suppressed for quite some time after RAI, so this is not a good benchmark for making dosing decisions; relying on TSH alone can send patients severely into hypO territory.

Hopefully, things will start to get better from here for you, your wife, and your entire family. Take care!


Kimberly
GDATF Forum Facilitator

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

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#8 March 24, 2012 03:59:28

sharilynk
Registered: 2012-03-24
Posts: 2
Profile  

Wife want divorce and family in shambles

Hi there. I'm a woman who's been down the hyperthyroid road like your wife at about the same age, and, although I never cheated on my husband, I can see how it could happen. I certainly went through a long period of being very difficult to live with. I was sure that, after all my years “sacrificing” for my family, none of them appreciated me and why should I continue caring so much about their needs instead of my own needs. Long story made short, I became totally self absorbed and angry about everything. I'm glad they put up with me and that I didn't go so far off the deep end and destroy my family. But I can see how easily it could have happened. I don't know where I'd be without my husband of 33 years and my two wonderful adult kids. I used to work in medicine and the docs used to tell our patients when they gave them certain medications that could alter their reasoning abilities, “Don't make any important decisions while you're on this medication”. Well, thyroid docs should tell that to hyperthyroid patients. Reasoning goes out the window and onto the street. Sadly, many endocrinologists don't do a very good job of managing the patient. They want to do lab work and prescribe and not see you for three or six months. It's hard to find one that really understands the full effects of the disease. Managed care has made things much worse because the docs have to see a lot of patients in order to pay their bills.
You said your wife had a low white count on the methimazole. Was she still on 15 mgs? For me, I am a small frame person, and my doc started me out on 20 mg but quickly dropped me to 10 mg and then to 5 mg. My white counts went low too, but after I went down to 5 mg. my blood counts returned to normal and I was able to maintain normal thyroid numbers on that low dose.
I eventually went hyper again after being on the meds for two years and then trying to go off. I was off meds for over a year before I went hyper again, so last July had rai treatment. It's been a tough row to hoe. It's been so long since I felt normal I don't know what normal feels like. I went low and gained a bunch of weight before my doc started me on synthroid. Now my numbers are back in range and I do feel better but still have heart palpitations and trouble sleeping through the night. My muscles cramp and my skin has changed a lot. I have about 20 pounds to lose.
My point is, while rai stops the overactive part and some of what goes with that, there will be a whole new set of physical issues to deal with. Too much thyroid followed by rai followed by low thyroid followed by medication does a terrible number on a person physically and recovery takes a while. Sometimes I feel like I've been through chemo and the effects are ongoing.
So hang in there and I hope your wife will too. Hopefully the crisis will come under control and she will look back at some point and appreciate that you and the girls stuck with her. It takes a lot to do that. Best wishes.

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#9 March 24, 2012 20:15:19

bobkatak
From: Minot, ND
Registered: 2012-01-30
Posts: 12
Profile  

Wife want divorce and family in shambles

Sharilynk

Thank you so much for your response. My wife has said those things exactly. She just told me again tonight that she catered to me and the kids her whole life and nobody appreciates it, its time for her to do what she wants. I have been doing a lot of reading about RAI and I understand it can be a long road to recovery. i am willing to stick with her as long as she will let me.

We did talk tonight and she agreed not to do anything until her blood test come back normal. I am trying to repair the relationship between her and my daughters but she told me to stay out of it. i will probably back off until her levels come back closer to normal. Everyday since the RAI her hyper symptoms get worse although I think the beta blocker works well since I havent seen the rage I saw two months ago.

Again I really appreciate your comments and i am hanging on and supporting her as long as she will let me.

Edited bobkatak (March 24, 2012 20:49:49)

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#10 March 28, 2012 10:34:02

katherinesc
Registered: 2012-03-12
Posts: 16
Profile  

Wife want divorce and family in shambles

My heart goes out to you because I want to admit here, the EXACT SAME THING HAPPENED to me, except, I went through with the divorce and was NEVER DIAGNOSED with thyroid disorder. It was the WORST THING I've ever had happen. I was married for 13 years and divorced for only 6 months THANKFULLY. I've been REMARRIED to the same man AGAIN for another 20 years for a total of 33 years now, but it was a HORRIBLE time in my life. If you would like to email me personally to talk, please feel free to do so. I believe, that after my mother's death, the stress of that took over my existence. I'm so sorry for what you and your family are currently experiencing and it is my hope that your wife seeks the appropriate medical treatment and can see the loving, wonderful family she has before it's too late. Know you are in my thoughts.

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