[Patsgirl April 26, 2016 at 4:11 pm Post count: 9]

#1060734

Hi All,
I am new here. This is my first post.
My husband (Pat) was diagnosed with Graves Disease in January. He had his thyroid remove completely on April 1st. He has demonstrated behavior that is completely out of character for him. Most recently, he walked out on me! There have been no warning signs that he was unhappy in any way with our marriage. We recently took a cruise together and booked another. We have had a marriage that has been loving and giving and peaceful. This is the second marriage for both of us. He has been planning a surprise birthday party for me for 3 months. He just told me this. Our friends and family are as shocked as I am at his behavior. He has not indicated to anyone that he was even remotely unhappy. The man I married would never say the hurtful things he said to me….and especially not a week before my daughters wedding! This is a man I don’t know anymore.
I have consulted his endocrologist office (spoke with the same nurse twice) The first time she suggested he have blood work done right away which he hasn’t done yet. The second time she told me that his behavior had nothing to do with his condition and it as simply a marital problem.
I’m so confused and worried! He still has not come home and is staying with friends.
Is this behavior due to his illness? Where do I go from here for help and advice?
Thank you ,in advance for any insight you can give me.

[KimberlyOnline Facilitator April 26, 2016 at 4:59 pm Post count: 4288]

#1184385

Hello – We are fellow patients here, but my first thought would definitely be to have your husband get his labs checked ASAP. It’s common for the initial dosage of replacement hormone to need some slight tweaking after surgery, and having thyroid levels out of balance can absolutely cause emotional upset – which could lead to behavior that is out of character.

Hopefully, you have friends/family in common that you can reach out to. The first priorities would be to make sure that he is taking his replacement hormone as directed and that he is following up on any lab tests ordered by his doctor.

The following resources might also be of interest.

(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, 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).

Video – The Emotional Aspects of Graves’ Disase
https://www.youtube.com/watch?v=CB8_5rbCso8

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

[genuinruby April 26, 2016 at 6:22 pm Post count: 92]

#1184387

Dear Patsgirl,

Graves is hard on the whole family. Getting balanced on Thyroid Replacement after a TT (Total Thyroidectomy) can be a bit tricky. He might be resistant to having his levels tested so soon. The trend I see is after the TT the patient is put on too low of a dose and end up hypo for a while. Or put on too much, that doesn’t take in to consideration for the potential thyroid hormone that is still in storage in the body. Taking the thyroid out only stops the pool from being replenished. It takes awhile for the pool of thyroid hormone in our bodies to reach their new “normal” – in your husbands case, it hasn’t even been a month. Men having Graves is less common. I hope one of the “guys” on here can offer you a little more insight. Personally, I was one of the “Crazy Ones”. The anger, the indifference, the lack of need for sleep. I could not talk fast enough to finish my thoughts. After my surgery I was put on a dose that seemed perfect for me…but then, after the “pool” went down I became very hypo. My APN, panicked and put me on a higher dose and from there, I went hyper in record time. It took more than 2 years for me to get balanced. I hope he will get his levels tested soon.
Ruby in Reno

[Patsgirl April 26, 2016 at 7:48 pm Post count: 9]

#1184388

Thank you both so much! It has been difficult to find wives of men with GD since it is not very common.

I’m desperate for answers. I can forgive his behavior if it’s the meds/disease. I won’t know until his levels are checked on Friday.

For now, I just need to be patient

[snelsen April 28, 2016 at 7:07 pm Post count: 1909]

#1184389

Well, tomorrow is Friday, thank goodness! If he goes early in the day, maybe he–and the doc, or course, can get the levels and I hope, make some adjustments in his meds. I do think it is his meds, and the Graves

Genuine Ruby (hi, Ruby!) has thoughts that are excellent and accurate. It does take time to get doses regulated. I really do think it is the damn disease, and that he will revert to the nice person he used to be. Most of us who have had Graves’ has experience the anger, the rages, the rejection of people we love the most. When I look back, I cannot believe that was really ME! I don’t know if reading this post would be helpful for him, but maybe it would. Probably he does realize he is not “himself.” He sounds like he was (and will be again) a very nice person, and you will resume your good relationship. This is really tough, and I am so sorry you have to deal with it.

Friday is a tough day to have labs, cause the dreaded weekend is coming, so if you or he can push and push to get the labs, and ask what the treatment plan is, go for it!
Shirley

[Patsgirl May 2, 2016 at 4:19 pm Post count: 9]

#1184390

No lab results yet…
He did attend my daughters wedding with me on Saturday and acted like nothing ever happened. After that he has been mostly distant… Not mean, but not close like we used to be. I don’t know how to behave with my own husband. It’s frustrating but I’m not giving up! I love him too much!

Jill

[KimberlyOnline Facilitator May 2, 2016 at 5:12 pm Post count: 4288]

#1184391

Hopefully, the fact that you attended the wedding together is progress – keep us posted!

[snelsen May 2, 2016 at 5:34 pm Post count: 1909]

#1184392

Ask for the labs. They were available 2-4 hours after they were drawn. Either you will be told they are:
1. “fine” In that case, someone should continue to explore this situation.
…and you should ask what that means.
2. “he needs to take more thyroid hormone?” Which I am guessing is the case.
3. Ask if he is hyPER or hyPO. His symptoms are more like hyPER.
And you should ask to have the RX called in so he can begin today..or tomorrow. AND ask how long it takes to see and feel a difference. Unfortunlately, it takes 4-6 weeks, but sometimes it is earlier. Depends on person and dose.
Most likely if he needs more hormone, he will feel better in a week, but how he feels needs to be combined with the labs.

Is he seeing an endocrinologist who understands Graves? Or a doctor who does? Many don’t. And many endos focus on diabetics, since it is an epidemic this country.

Most of what I have said you can read in any article. I am just reflecting on how I manage myself. WE (patient and family) are the ones most motivated to pursue and understand our care. And Graves’ is not a cookbook situation, which makes everything harder.
Shirley

[Patsgirl May 3, 2016 at 1:25 pm Post count: 9]

#1184393

Thank you Shirley! I called the endo office and spoke with the nurse. His results are back but there were no notes from the dr yet. The dr wasn’t in and won’t be back until tomorrow so she did not give me results. When I asked her if these tests included calcium levels she said they did not.

This is so frustrating….

[snelsen May 3, 2016 at 9:38 pm Post count: 1909]

#1184394

I am so sorry that you have had this wait. Will the doc be able to reach you-your husband anytime tomorrow, so you don’t have to play telephone tag? Does he email, or communicate with you electronically/ If so, ask him to release the results or send them. Is this a new doc for your husband? etc. etc.
First things first. Do write again when you know more, and I sure hope it is tomorrow.
Shirley

[KimberlyOnline Facilitator May 4, 2016 at 9:40 am Post count: 4288]

#1184395

Also, for future tests, have your husband check to see if the lab can send the results online. I don’t know about all providers, but with Quest and LabCorp, you can register to have results e-mailed to you directly.

Of course, you still need to consult with a doctor about making dosing changes, but this at least gives you the results right away and lets you “digest” the information before seeing the doctor.

[Patsgirl May 6, 2016 at 9:53 am Post count: 9]

#1184396

Update:

The nurse finally called my husband on Wednesday to say the Dr. wants him to retake his blood work in 3 weeks. He asked her if his levels were normal but she said the Dr didn’t say….just that he needs to go back in 3 weeks.

I can’t call there again….they treat me like I am crazy. He won’t call because he doesn’t think they know what they are doing.

As far as his emotional state goes….we had a few good days of ‘normal’. Today is his birthday and he has reverted to distant. I gave him a beautiful, heartfelt card to which he responded thank you with a kiss on the forehead…. He never does that….I don’t know what to make of all of this. I feel like the line between me being patient and me being in denial is very blurry….

Jill

[Liz1967 May 6, 2016 at 11:15 am Post count: 305]

#1184397

Everyone is entitled to their own medical records, including labs. If this is his endocrinologist, your husband can ask his internist or even his surgeon to request his labs. You can bet they will send them off to another doc without issue. That should not be necessary, your husband should be given the labs. I would have no hesitation switching docs. My surgeon managed my labs and dose for the first six months postop. A nurse practitioner does that now. My endo was a waste of time, an internist can manage thyroid replacement. It isnt rocket science. If you are low, you take more Synthroid, if high you take less. Takes awhile for it to stabilize but a good doc will get you close to optimum pretty quickly. That being said, blood work usually isnt repeated at that short an interval unless there is a problem.

[snelsen May 6, 2016 at 6:46 pm Post count: 1909]

#1184398

Agree with Liz on everything she said. This is ridiculous. I am sorry, but you need a new doc..ie your husband does. To get a call on Wednesday, about a lab drawn so long ago, is wrong. If HE (not you) calls, just talk to the voice which answers (0r better yet, go to the docs office) have him sign the Release of Information form, stating that he wants all labs, summaries of all visit, sent to him. You can’t do this, he must do it cause it is his medical record. If you want to practice it, o the same with yourself. I cannot IMAGINE not having records of my visits. In these days, I usually get it at the end of the visit. But some is online, depending on where you are.

It is crazy for you not to know these labs. And three weeks, with no knowledge, is nuts. You don’t know if they are normal, within range, or not in range. Grrrr.
Shirley
Sure am glad you wrote to this forum. You have new friends here. Maybe later, your husband will read the guy stuff. But take it a step at a time right now, I guess

[Patsgirl May 7, 2016 at 1:36 am Post count: 9]

#1184399

Thanks everyone but my husband has informed that our marriage is over and has been for quite some time. He has moved to a guest bedroom and will look for a place to live. My devastation has overcome me!
I advised him to educate himself on this disease and to take an active role in his treatment. His family is aware of everything and will need to look after him now.
I told my son (24) last night and he took it really hard. He said your relationship was what made me believe in love again…and he cried…
I’m not sure how to tell my daughter when she returns from her honeymoon tomorrow.
My heart is broken!

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