[lisamac]

#1059650

hi all i really feel for the horrible torment this disease puts sufferers through.
my wonderful husband of 6 years has graves.
he was diagnosed in 2010 it sounds horrible but it was great to have an explanation for his mood swings and other symptoms we were enduring as a new family.
people called him bipolar, schizophrenic and other hurtful horrible things for years it almost cost us our marriage.
i knew there was more going on then just him being disagreeable all the time so praise the lord i persisted and due to high body temperatures and very fast heart rate i got him to the doctors. his thyroid levels were four times what they should have been
he was put on neo merzicole immediately 12 tablets a day for the first 6 months and gradually down to 2-1-2 daily when our endo said he was in remission last year Sept2012 so we were to wean him off all meds Nov 2012 and get on with our lives!
yeah right this horrible reared its ugly head again almost the moment we thought it was gone.
just before the end 2012 he started diplaying the same characteristics again lethergy, argo, extreme body temperatures, slightly igher faster heart beat, and bitterness.
the worst of all was the self deprivation watching someone you love become so unhappy in themselves wanting to be dead thinking thats the best option is so heartbreaking because if you try to give them a kick in the rear your being too hard but if you let them give up
“your better off without me”.
after much persisting he went back to gp this week and its back graves has reared its ugly head again! this time five times higher then it should be
endo reccomends surgery or iodone treatment. we go back in 2 weeks for further discussions.i think surgery but hubby is scared to go down that road
has anyone had either option? any advise would be valued greatly.
in closing i really feel for any person suffering this disease personally or as a partner im not medically knowledgable but emotionally this disease is a killer
stay strong and love and support each other.

[Kimberly]

#1176524

Hello and welcome! First, thank you for being such a great advocate for your husband…unfortunately, not all Graves’ patients have the benefit of this kind of support.

I’m guessing you are outside the U.S., since a similar drug called Methimazole (instead of neomercazole) is the more commonly prescribed drug here. The latest U.S.-based guidelines recommend testing antibody levels (TRAb) prior to withdrawing anti-thyroid drugs like neomercazole. The concern is that if antibodies are still raging – even if levels are normal – hyperthyroidism can recur. This test isn’t a perfect correlation, but the main U.S.-based agencies believe that it does have some value in predicting who will come out of remission.

Now that your husband is dealing with a recurrence, another round of the neomercazole would be an option, along with the RAI and surgery options that were discussed with you.

We do have some regular members here who have chosen surgery as their treatment option. This board has a search function (in the top right-hand corner of the screen), so you can run a search for “thyroidectomy”, “surgery”, etc. to read their stories. This is also an informative site regarding thyroid surgery:

(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, 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).

http://endocrinediseases.org/thyroid/surgery.shtml

Hope this is helpful – wishing you and your husband all the best!

[adenure]

#1176525

I’m sorry you and your husband are dealing with this. It really does stink. No doubt about it. You can kind of see my “Graves journey” in a nut shell on my signature below.

I chose surgery and am happy that I did. I was scared and nervous about it, but I was very fortunate to have a great surgeon. If your husband chooses surgery, that is my number 1 suggestion: make sure you have a great surgeon who does a lot of thyroidectomies. I wasn’t comfortable with RAI for various reasons, but I know that for many, it works well and people are happy with it. — just like a lot of people are happy with surgery. I think it is an individual decision. I am happy with my choice. My surgery recovery time was probably about a month I’d say (as far as feeling stronger, having my voice back to normal etc). After about 2 weeks, you feel pretty well enough to take on your usual day, but slowly. Getting thyroid replacement hormone therapy right (the dose) takes time. I had one dose change 6 weeks post surgery and am still on that dose now. I’m 7 months post surgery. I didn’t start to feel better though (as far as my Synthroid dose) until about 4 months post surgery. It takes time; it isn’t easy- which I’m constantly reminded of- BUT, I AM much healthier now than I was a year ago and, as long as my meds. are at the right dose, I will never go hyperthyroid again, and that is a wonderful thing.

[Bobbi]

#1176526

And I did the iodine treatment — we call it RAI, here — 16 years ago. My mother had had it done 25 years before me. The treatment made us well again.

I realize that a lot of folks do not want to give up their thyroids, which may be a part of your husband’s reluctance to consider surgery or RAI. For me, giving it up, getting rid of my thyroid, came from the realization that my thyroid was throwing my life into chaos from time to time. I know we get into discussions — debates — about the fact that it is truly an antibody that is making our thyroids malfunction, but, regardless, getting rid of my thyroid made me well again without the periodic bouts of intense illness that I experienced before diagnosis. People can, and do, live healthy lives without their thyroids.

I recommend sitting down with your husband and, using Kimberley’s good link, make a list of the pros and the cons of each treatment option. Try to be objective about the pros and cons before letting emotions play into things. Then, once the objective lists are made, bring in the emotional response and try to figure out what treatment option your husband is most comfortable with.

I do wish your husband good health soon. Do keep in mind that it is possible to have Graves AND have good health. Our treatment options work.

[lisamac]

#1176527

hey guys hope all is well
my husband goes into surgery next week for a total thyroidectomy.
we meet the surgeon this week and she is lovely and i have full confidence in Dr.Miller and am sure all will be well.
His levels are dropping steadily but the symptoms are really promient this time.
xx

[Kimberly]

#1176528

Thanks for the update! I know that this is a difficult time, but it’s probably a relief for both you and your husband to have the treatment decision made. Wishing you both all the best…please keep us posted!

[lisamac]

#1176529

thanks kimberly this forum helped alot it was great to read others experinces.
surgery is on tuesday 5th march so fingers crossed it works, i know i sound selfish but its taking its toll on me watching my hubby going through this is awful…… xx

[adenure]

#1176530

Hi,

Congratulations! The path to being well and being able to live a normal life again is right around the corner! I’m 8 months post surgery now, and surgery will give your husband is normal life back. It might not be perfect or even 100% “pre- Graves”, but it WILL be MUCH better! I’m about 95% or so my normal self again. My only complaint is I can’t work out as much as I used to. Instead of 2 hours, I can only manage 30 min.! But, hey, if that’s my complaint, I’ll take it! As far as the emotional issues and physical problems, all of those are gone! It did take time after surgery for my body to level out and get normal again- about 4 months I’d say. I had one Synthroid dose increase. About 2 months after that, I started to feel pretty good again. I’m happy for you both.

[EricsWife]

#1176531

I just wanted to say ‘thank you’ for writing about your struggles. My husband was diagnosed in October 2012 with Grave’s and we’ve had a rollercoaster of emotions, physical symptoms etc. We’ve done fairly well even with lot’s of other emotional turmoil around the holidays, (lost my job-but have a new one, etc!) It seemed like we were on the upswing the past month, but then last week the ugly baby reared it’s head and my husband is having one of the worst mood/emotional spells to date.

We actually don’t have health insurance until Friday, (since I had to wait 30 days before new kicked in) and he’s scheduled to see his endo next week, but I convinced him to call his primary and they are fitting him in today. They’ll just have to get their money in installments for this one! I’m not sure what/if he’ll be able to give him…at this point I’d settle for a drug that just put him to asleep for a week until his appt. if I thought that would help curb the anxiety.

This is really, really hard…and I don’t think we are close to the end…each time we think his meds are balanced we are thrown a loop like this one. I know we have a great endo, but it sill makes me want to scream-can’t you do more?! Or, fix this NOW!

We have two little kids, 5 & 3 and it’s killing both of us when he loses his temper with them or how I can see from his face his lack of enjoyment in everything.

I’ve had my share of health issues, but this is by far the worst since it affects mind and body. Sucks, sucks, sucks.

[vanillasky]

#1176532

I’m so sorry you have so much pain going on. Believe me,I have struggled with this monster for 15 years and it isn’t over yet. I have just been diagnosed the same month. Now I have to go back to the doctor next March 20th to see what they plan to do with me…

It is horrible. Please know you may feel all alone but you aren’t. We all have it and we are all here. Rant and rave all you want. I’m here right now for that purpose I had a rotten day, but I’m always here for help and support when I can. Everybody on here helps me.

Karen

[adenure]

#1176533

Eric’s Wife,

Once your insurance kicks in, is your husband willing to consider RAI or surgery? I have 4 little ones too (9 years old, 8 y.o., 5 y.o., and 15 months old) and I homeschool them. I know how incredibly impossible it is to care for your family when you’re hyperthyroid. It is a miserable existence. I was on methimazole, but due to adverse liver effects from it, I had to decide on surgery or RAI after 7 weeks on the meds. I chose surgery (that was 8 months ago) and am so very happy that I did. I am much healthier now than I was and am physically, mentally, and emotionally myself again. It is a scary decision, especially when everything makes us scared and anxious bc of the disease. But, it feels so good to be well again. It can happen. It might be something to consider.

[Kimberly]

#1176534

@Ericswife – I hope that your husband did get some direction from his primary care physician. I’m not clear if your husband is taking anti-thyroid drugs, but he definitely wants to pursue *one* of the available treatment options. (Alexis mentioned the other two – RAI and surgery).

I’m including a couple of links below that will hopefully shed some light on the mental/emotional aspects of Graves’ disease. The good news is that once levels get stabilized, your husband should see some relief from the emotional swings that he is experiencing. In the meantime, I don’t know if violence is a concern, but if it is, remove yourselves from the situation or call 911 if you need to. Hopefully, it will never come to that – but you definitely need to take care of yourself first!

(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, 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).

GDATF Bulletin on Mental/Emotional Aspects of Graves’:
http://gdatf.org/about/about-graves-disease/patient-education/whats-wrong-with-me/

GDATF 2012 Conference Presentation:
http://www.youtube.com/watch?v=CB8_5rbCso8

Take care – and please check back to let us know how you and your husband are doing!

[AzGravesGuy]

#1176535

lisamac wrote:

i know i sound selfish but its taking its toll on me watching my hubby going through this is awful…… xx

Hardly! GD affects spouses as much as it does the afflicted. There is no shame in feeling this way. I hope the surgery provides some respite for both of you.

[trinapedd]

#1176536

Hi, i’ve been dealing with this for almost two years. I did the rai treatment 10 months ago. It didn’t kill my thyroid and the meds after have not worked, so now it is hyperactive again. My husband has been great, he’s patient, understanding, and trying hard to listen to all of my whining and complaining. BUT, the changes it’s making to my body and moods is almost unbearable. I found this forum today and it’s been great not feeling alone. I’m so tired all of the time, moody, don’t wanna clean, cook and depressed. I guess the next step will be another rai treatment, but I just feel like it’s taking so long to feel better or to get anything done.
I am so tired of feeling sick and, the tremors, I have constant headaches, but the endo doc says the headaches are not related to the graves. It’s nice knowing i’m not alone. Most days I feel that way

[Kimberly]

#1176537

Hello and welcome – sorry to hear that you are back on the hypER rollercoaster after 10 months! At this point, you do have all three of the original treatment options available to you: anti-thyroid drugs, another round of RAI, or surgery. You can find a couple of great links in the “Treatment Options” thread in the announcements section at the top of the forum that go through the pros and cons of all the options. You might also check out the recent posts from AZGravesGuy, as he is also in the process of dealing with an unsuccessful RAI treatment.

Interestingly, there was a study just released that links hypothyroidism and migranes…although the researchers in this particular study did not address *hyperthyroidism*.

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

[Author]

Posts