[bobkatak]

#1058828

All,

Until about 3 months ago I was married to the most wonderful 46 year old woman and mother for 23 years. We had a very good relationship, we have two wonderful children and our lives were set that is until this past fall. i didnt notice and major changes over the summer and we spent a lot of time together fishing, camping, and visiting our kids. This past Nov she started getting very short tempered and we would argue over little things. the last time she wouldnt talk to me for 10 days even after I cooked her a very nice sea food dinner. I started thinking there must be something else going on so I checked her cell phone account I found out she was texting and calling some guy 50-70 times a day. When i confronted her she immediately said she wanted a divorce, i was floored and mad at the same time so i agreed. After settling down the next day I told her we had too much together and loved her with all my heart, we needed to try and work out what ever was bothering her. She agreed to wait until after the new year but wasnt going to change her mind. At the time she was starting to have excessive bowl movements, trouble sleeping, very short tempered, and menstral cycle problems. She thought it was menopase so she scheduled an appointment with her doctor for mid Dec. When she got her blood tests after the new year they told her she was hyperthyroid and was refered to an endo.

Mid Jan 12 the endo did blood test and told her she was hyperthyroid.
TSH 0.01 Range .34-5.60
T4 Free 1.41 Range .61-1.12
T3 Free 4.32 Range 2.50-3.90

She has progressively got worse, she has moved out of our bedroom, stopped talking to me, very short tempered but the part I am having the biggest problem is she is now cheating with a guy from her work. when I confront her she denies it and get very mean and wont talk to me at all. She dresses very provacative like she is a teenager, always tanning, getting nails and hair done.

She told me she wants a divorce because I been mean and controlling my whole life. Me and the kids changed her into something she didnt want to be. We had a great marriage and i was beating my head against the wall trying to figure out what I did wrong. I have done a lot of research and i am amazed what devestating effect hyperthyroidism can have. Her uptake scan is tomorrow but doctors appointment isnt until next week. Everyday is misery for my and my family. Luckily my kids are 21 and 22 so i can talk to them.

I am at my witts end and dont know what to do, I print info for her all the time, I told her doctor what was going and he just said thats common but couldnt do anything until the uptake test.

Do I have false hopes that it is the hyperthyroidism causing this and how long does it take for her to come back to normal. I know she already has divorce paperwork even though I convinced her not to do anything until she got treatment. i am affraid she wont wait. Also the cheating is tearing me up inside I dont know how long I can take it. Please help!

[Kimberly]

#1170243

Hello – I’m sorry to hear that you are dealing with all of this, but am glad that you found us. Having our thyroid levels out of balance absolutely affects our emotional state. We often refer to having “Graves’ Rage” – a sense of anger and frustration that usually has NO logical basis. This absolutely puts a strain on marriages and relationships. If you use the search function in the top right-hand corner of the screen and do a search for “wife”, “husband”, “divorce”, etc., you can read experiences from others who have been through very similar situations.

Getting one’s thyroid levels back in balance – and going through the healing process – absolutely makes a difference. In fact, we caution patients to NOT make major life decisions (divorce, job change, major purchase, etc.) until their levels are stabilized. The first step will be for your wife to get a definitive diagnosis and talk to her doctor about treatment options. (Graves’ is the most common cause of hyperthyroidism, but other issues can cause hyperthyroidism as well, including thyroiditis and overactive thyroid nodules). Someone at the Foundation would be happy to speak to her about her available options; we can be reached at 877-643-3123 or at info@ngdf.org.

Also, following are a couple of bulletins that might be helpful to you.

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

An Open Letter to Husbands of Graves’ Patients
http://gdatf.org/about/about-graves-disease/patient-education/an-open-letter-to-husbands-of-graves-patients/

What is Wrong With Me? I’m Not Myself Anymore
http://gdatf.org/about/about-graves-disease/patient-education/whats-wrong-with-me/

Take care – please keep us posted on how you and your family are doing.

[bobkatak]

#1170245

Thanks for the comment Kimberly, here’s an update.

She had an iodine uptake scan and it came back a little high, I expected it to be a lot higher based on her attitude and actions. We finally had an appointment with her endocronologist on 7 Feb and he prescribed 20mg Propanol taken twice daily and 5mg methimazole taken three times daily. The beta blocker seems to have controled her rage and anger but her attitude towards me and the kids has not changed. the last two days she seems to be communicating a little more but today is day 17 of being on meds and the change in her attitude I had hoped for does not seem to be happening or at least not very fast. The last two days she seemed to be getting a little better but this morning she seemed to be her same distant self. How long does it take for the methimazole to start working and does anyone know if 15mg a day is enough. Her next appointment for blood tests is 5 Mar but that seems like a long way off considering what it is doing to our family. Any advice would be extremely appreciated.

[Kimberly]

#1170246

Hello and thanks for the update. Anti-Thyroid Drugs (like Methimazole) start working right away to block the production of new thyroid hormone, but it can take some time for the body to “burn off” its existing stores of excess thyroid hormone. This can typically take a few weeks, during which your wife should *start* to see some relief from her symptoms. Keep in mind, though, that if she has been hyperthyroid for a while, it can take some time for the healing process to take place.

We aren’t doctors here, just fellow patients, so we can’t tell you whether the 15 mg is the appropriate dose. However, for reference, I can tell you that is the dose that I started on, and I was able to cut it in half within a few weeks, as my levels started dropping into hypo territory fairly quickly.

One thing to watch for at your wife’s next appointment is to make sure her doctor is making dosing decisions based on Free T4 and T3, and not on TSH. TSH can remain suppressed for quite some time in Graves’ patients, so using this as a benchmark early in the dosing process can end up sending patients into hypO territory. The latest guidance from the American Association of Clinical Endocrinologists and the American Thyroid Association notes that: “Serum TSH may remain suppressed for several months after starting therapy and is therefore not a good parameter to monitor therapy early in the course.”

If your wife experiences a worsening of her existing symptoms, or if she starts feeling symptoms of hypO instead of hypER, she can call her doctor’s office to see if they will run a new set of labs ahead of schedule. Every patient is different, but common symptoms of hypO can include fatigue, joint pain, unexplained weight gain, constipation, dry skin, cold intolerance, and slow pulse.

Also, it’s helpful to have your wife get a hard copy of her labs at each visit. That way, you can track progress at different doses of the meds.

Wishing you and your family all the best.

[bobkatak]

#1170244

Thanks

I have been getting copies of all her tests I just hope she still lets me go with her. A lot of her symptoms are getting better but I dont know if its the beta blocker or ATD. I guess I am hoping I wake up one morning and she turned back into the loving caring woman I have known for the past 23 years. She still thinks there is nothing wrong with her, she is fine with her new attitude and outlook on life. She is all about her looks and being the center of attention, she dresses and acts like she is a teenager again. She hardly talks to me and hasnt talked to her daughter since the beginning of Dec. When I ask her to fix her relationship with her daughter she refuses and will say they need to make the effort if not its their loss. That is the part I am hoping the medication fixes soon so we can work together as a family on fighting her disease.

It has been a long 3 months dealing with this but I am with her until the end or until she wont let me be here anymore. Is there anyone else that has experienced the same type of emotions and did it correct its self or is it far fetched to think this is driven by her hyperthyroid.

Thanks again for the support.

[snelsen]

#1170247

Hi, I am wondering if your wife is getting the understanding should be getting from her endo? Kimberly had some great references, but that does not mean that your wife has been willing to read them Has she?
I don’t want to frustrate you by suggestions that are impossible for you to carry out, cause they require your wife’s cooperation. But I would like to suggest that you make an effort to find a good family therapist, even if it is only your wife and daughters who will go. It must be terribly tough on your daughters (you know what it is like) to have that distance, and be regarded as invisible. To me it shows me how impacted your wife is by this illness, to throw the responsibility for communication back to the kids.

I think i understand that she is on the ATD right now. Did the endo mention RaI or one of the other choices for the future? I think RAi is what you mentioned. Sure wish the doc would spend some time with her with some leading questions which might help your family.
Shirley

[bobkatak]

#1170248

Snelsen,

She does not get the support from her endo, he just tells me that happens with hyperthyroidism but wont tell her anything. She is on ATD’s and a beta blocker she refuses to get RAI. I have printed a lot of things for her to read and bought her a book about it but she refuses to read them. She continually says there is nothing wrong with her its me that has the problem she feels good. Finally I think the ATD’s are starting to have an effect, she went to dinner with one daughter to try and rectify things and has been trying to talk to my other daughter today. Dont get me wrong she has a long way to go but I have some hope she is improving.

She did say something about going to a counselor yesterday but she said only because my daughter told her she needed to. But she also said she hasnt changed her mind about me and still wants a divorce but I plan on sticking it through as long as she will let me.

I am afraid she will stop taking the ATD because she is starting to gain weight and is taking pills to get rid of water weight, she is all about her looks right now.I am just keeping my fingers crossed and do what i can to keep her moving in the right direction. She has blood tests monday I really hope the endo knows what he is doing and doesnt reduce her meds to the point she stops the recovery. Everyday is really tough for the whole family so we get excited over any improvement. I wouldnt wish this on my worste enemy and it has been going on for three and half months now but she has only been on meds 23 days now.

Thanks for the input, sorry I am rambling but it may be helpful for other families that are going through the same thing to an idea what they can expect, plus it helps me to vent.

[Kimberly]

#1170249

Hello – It sounds like you are at least seeing some steps in a positive direction. Although your wife doesn’t really want to take much advice right now, it does sound like your daughter is having a good influence. You might mention to your wife or daughter that diuretics to remove excess water weight have potential side effects and need to be taken under the direct supervision of a physician. Here is some info from WebMD.

[size 10](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. As an alternative, you can right-click the link and open it in a new tab or new window).[/size]

http://www.webmd.com/hypertension-high-blood-pressure/diuretic-treatment

Appearance issues associated with Graves’ — whether weight changes or eye involvement — can be VERY emotionally distressing. I know from first-hand experience. However, your wife’s #1 priority right now needs to be getting her thyroid hormone levels stabilized so she can get back on the road to good health.

Take care!

[bobkatak]

#1170250

Wow, thankyou for the link and info. One key thing I saw is that most diuretics are sulfa based, she is allergic to sulfa based meds and was complaining this moring she felt very sick. I did tell her she has to stop and she said she hasnt taken them in a month but I know that is not true. The sulfa will make her rethink taking them, she gets very sick on sulfa.

[bobkatak]

#1170251

Just a quick update. Wife was in week four of being on Methimazole and really seemed to be changing. By the weekend she started to feel sick with flu like symptoms and they continually got worse. We assumed it had to be the flu since she was on meds for almost four weeks without any reaction. Monday 5 Mar she had a doctors appointment and they check her white blood cell count, it came back very low and she was immediately told to stop taking the methimazole because it was a severe reaction to the meds. Just my luck as things started to get better she would get uncommon side effects and have to stop taking them.

We had a long discussion that night and luckily she agreed to RAI and is scheduled for 20 Mar. Now that she is off the methimazole she is steadily going back to the angry mean person she was. This disease is very trying but hopefully the RAI will be a successful long term solution to this disease. What an unbelievable three to four months this has been and just when I think resolution is just around the corner we are thrown another curve ball.

Does anyone know how long after RAI her symptoms will improve? She is still on beta blockers and the doctor increased her dose so that helps some.

Hanging on tight but what a trying destructive disease. Thanks for letting me vent.

[snelsen]

#1170252

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

[Kimberly]

#1170253

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.

[emmtee]

#1170254

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.

[bobkatak]

#1170256

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.

[Kimberly]

#1170255

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!

[Author]

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