[bmw2002]

#1058682

Hello,

I’m the husband of a lovely woman that was diagnosed with Graves in 2001. She had a severe case with the typical symptoms plus significant psychological problems. She was going through hell, for a very long time, and was even suicidal for a brief time. I feel guilty for saying this now, but it took considerable effort to try keep our marriage together. She was very debilitated and frequently verbally abusive. It was the worst time in both of our lives, by far (obviously way worse for her). I just kept telling myself that she is very sick, and she WILL get better…and the things she is saying to me are NOT personal. It’s the Graves talking. And it turns out, it was.

She received THREE RAI treatments which all failed, got TED pretty bad, AT drugs, and finally, a total thyroidectemy in 2004. Shortly thereafter, I had my sweet wife back, and had her back 100%. She underwent lid surgery a year later. 7 years now and her daily pill is keeping her fit, happy and healthy. She went back to school, became an RN, runs marathons and is the mother of our healthy 18 month old boy. For those of you suffering, I hope you can read this story and see that there are great outcomes to this terrible illness.

So here, ten years after my wife was diagnosed, I am diagnosed with it!

My experience has been very different than my wife’s experience. Despite both of our awareness with this disease, we didn’t realize what I was going through. In May, I was diagnosed with hyperthyroidism after suffering from occasionally debilitating anxiety, mild nausea and later, rapid heart rate, symptoms that started in January of this year (noTED). After a few months of the anxiety, I finally decided to seek therapy (I had dealt with anxiety in the past, but not to this degree). Along with the therapy, the psychiatrist prescribed Prozac as an option, along with Xanax as needed. Along the way, I learned some great anxiety techniques (i.e., mindfullness, meditation), but none that significantly helped me. I decided against taking the Prozac, but an the occasional use of Xanax does help on the worst days.

Finally, at the suggestion of the therapist, I made an appointment to get a physical exam with blood work. Thyroid issues were never mentioned by the therapist, but he thought it would be a good idea to establish a clean bill of health. My GP gave me a call to come in and talk about my labs a few days later. My blood work came back with a TSH of .02.

Initially, I was quite relieved to have a diagnosis. It sounds crazy but it came as a relief to know that I had a physiological problem, and not something mental that I couldn’t gain control over. Of course, hyperthyroidism treatment, as I would come to find out, is hardly straightforward. Additional bloodwork revealed the following: T3 = 5.0, T4 = 1.2, Thyroid Antibodies – 121.4, TSH receptor = 2.07.

I met with an excellent endo that suggested that I had a fair chance of seeing a remission, given the bloodwork results. While he was careful to characterize my hyperthryoidism as "mild", I could read between the lines. He put me on metoprolol for "heart protection" and advised a "treat the symptoms" and "wait it out" course of action, meeting again in 6 weeks for evaluation. My eyes were measured and within normal range.

The metoprolol had me feeling better within a few days, lowering my 90-110 heart rate to 70-80. The anxiety has decreased as well.

July rolls around and I get another set of labs (but just TSH and T4 this time??). TSH is a barely better at .04 and T4 is the same at 1.2. I visit the a new endo (the last one moved to a new hospital), and advised him of the "wait it out" course of action that my last endo and I agreed to. He was a bit more conservative with my chance at remission, but thought that waiting a few more months was fine, as long as I wanted to wait and could deal with the symptoms. RAI came up in the conversation, as did AT drugs as future steps if needed. I asked about surgery, and while he didn’t kill the idea, he seemed like it wouldn’t be something that he would recommend.

(continued to next post due to exceeding character count)

[bmw2002]

#1169326

At the end of this month I have another lab draw, with an appointment a week later. I have a feeling that nothing much has changed, as the symptoms have been suppressed by the beta blocker but remain unchanged. I do have better days (95% normal) and worse days.

The October appointment feels like a crossroads, a time to make a decision. I’ve done a lot of research and have come to some preliminary conclusions, but am trying to keep all treatment options open. If someone were to tell me, "If you can handle the symptoms, and you’re protecting your heart with beta blockers, we can wait up to a year for remission", I would probably say, yes, let’s just stay the course as long as the symptoms don’t make me feel worse, I could handle it. The AT drugs scare me, and RAI scares me too, especially because of the possible likelihood of TED. Surgery scares me the least, and has the appeal of "finality". I can accept taking a pill a day for the rest of my life (most of us will probably have to take some kind of pill eventually, right?). I’ve also been witness to a loved ones positive transformation by surgery, so that has a significant bearing on my decision.

So, I’d love any input. I’m not sure if I’ve asked a question or not. Maybe the question is, is it OK to "wait it out"? What’s a reasonable amount of time to wait before giving up on remission and taking the next step? Is it safe to wait? The endos haven’t really answered this question (I’ll ask in October). I am under the impression that my heart is protected by the beta blockers (50 bpm in the morning upon wakeup and up to 80 during the day). Also, do the anti-thyroid drugs "trigger" remission, or do they just get your hormone levels to healthier numbers while you wait for your body to go into remission at whatever point it would occur (with or without the AT drugs)?

Thanks for reading

– j

[Bobbi]

#1169327

If I read your note correctly, you are only on a beta blocker. I am not a medical expert — nor are any of us here at NGDF. We are patients with more (or less) experience with the disease than "newcomers." But it is my understanding (and this is something that you should check out with your doctors carefully), that all a beta blocker does is mask the symptoms. It helps to take away the tremors. It helps to prevent arrythmias (which can occur because of the excess levels of thyroid). But muscle and bone loss (also a result of excessive levels of thyroid hormone) would continue, unabated. I’m not sure that it is at all safe to continue hyperthyroid, without one of the definitive treatment options being put into play.

On another note: you should be commended for your perseverance in helping your wife through her extremely difficult time. We can be difficult when we are hyperthyroid — our emotions are completely volatile. And many spouses don’t understand.

I do wish you good luck with your treatment.

[Denise321]

#1169328

I, too, commend you for being supportive to your wife. Unfortunately my Grave’s ended my marriage. In regards of you question about should you wait it out, NO. As Bobbi said, beta blockers only mask the problem. They don’t take it away. You are risking serious damage to your heart, and the possibility of thyroid storm, which can be fatal. Taking one pill for the rest of your life is much better than suffering through Grave’s. I don’t know that your levels would require surgery, so RAI might be a better choice for you. I have suffered with my Grave’s since 2000. As Bobbi also said, we are not medical professionals, just people who are suffering from the disease. It can be helpful to get other people’s input when going thru this disease. But, it is far more dangerous to leave if untreated. Even fatal, so I would not recommend waiting it out.

Denise

[snelsen]

#1169329

First of all, I would like to commend you for managing to remain married during all of this. That is a LONG time for both of you to experience all the behavioral, psychological and physical stuff of being hyper. It is hell. I do think our marriage was permanently damaged by this time, and many years later we did divorce. I was dismissed by many doc with my symptoms (you are working too hard, you just had a baby, you are breast feeding, you just need to relax. etc)
The first time anyone paid attention to me was when I collapsed at work (student nurse) and had a thyroid storm with a heart rate at that time of 160. Not sure why I survived. This was a long time ago, and the term ICU was not coined for another few decades. But enough about me ” title=”Smile” />

I also understand from your post that you are on a beta blocker only. I do realize that you are not interested in ATD, but I suggest you do reconsider them, for the reasons Bobbi said. My own thinking is, if we have Graves’, we have it. I had no interest in waiting for a remission, and that thought was never mentioned to me. I am sure you know more about the studies on remission than I do. I am not sure there is really such a thing as mild hyper according to numbers.

The anti thyroid drugs get you to safer place with the amount of circulating hormone.
Going back to my own experience, and the thinking of today, unless there is compelling reason, you have the choice of the three options, ATD’s, RAI or surgery. To me, it was a no-brainer. I am an "take action now" person, and it seemed the fastest way to move on, get my thyroid dose, and that is that! I had surgery, was so happy with it,I never looked back except with firm conviction that surgery was the right option for me. It seemed the quickest road to just find my thyroid dose, see how I feel, do the labs, and MOVE ON! And, of course, other people on this site made other choices, and I think they are happy with their choice.
I do disagree with on one comment. You can check this out, but I think you find that there is no relationship of labs levels indicating or not whether to have surgery. It is simply a choice. You don’t have to have a certain set of labs to "mean" surgery. I think this might be a misunderstanding. It does not make RAI a better choice.
Denise and Bobbi pretty much said what i think, it is not a good choice to wait it out.
Denise, I sure hope your world is better now on all fronts. How are you feeling now?
Shirley

[Pauline]

#1169330

Hello,
I found your story very interesting, and I was wondering what you decided to do. I, too, am trying to decide whether to wait, with beta blockers, or go ahead with RAI. On my last blood test, my TSH was .02, but my T4 is 1.5 and T3 is 115 (which I believe is normal). I tested positive for both Graves and Hashimoto’s, and my uptake was high on the RAI-U. One doctor recommends RAI, the sooner the better, and another says that I could take beta blockers and then wait and see if I go into remission, because my Graves is not "severe." My first doctor said that she would not recommend ATDs because of the potential side affects. Any comments would be greatly appreciated.
Pauline

[Kimberly]

#1169331

Hi Pauline – I had posted some stats for you on side effects with Methimazole on the "Success Stories" thread. The worst of the side effects are rare, and generally occur at higher doses of the meds.

This is a difficult decision where you will have to weigh the pros and cons of each option and make the choice that you think is best for you (with input from your doctor, of course).

Personally, I found a good old-fashioned "pro" and "con" list to be helpful in narrowing the choices down.

[Pauline]

#1169332

Hello Kimberly,
Thanks so much for your help. I guess what threw me was my first doctor’s insistance on RAI. When I asked her about medication, she said that she did not recommend it because she knew 2 people who died from taking it. Well, that really scared me. Anyway, I will take your advice and make a pro and con list–and talk to doctor #2 again. Thanks again.
Pauline

[Kimberly]

#1169333

Hello – I would suggest going back to the doctor who said she knew two people who died on ATDs and ask for more details. Does she really know that the ATDs caused the deaths? Or had these individuals already gone untreated for an extended period of time before being diagnosed and finally starting ATDs?

I’m not saying this risk shouldn’t factor into your decision — it should. Serious complications *can* occur on ATDs due to liver and WBC issues. However, these are *extremely* rare and usually occur with large doses of the meds. I would just suggest getting all the facts from this doctor before letting a passing comment influence your decision.

[MNMama]

#1169334

BMW2002 –
I read your story and it almost brought a tear to my eye. I was diagnosed with Graves Disease in December of 2010 and was on the verge of a thyroid storm. I had been feeling the "symptoms" for about 2 months before I went to see a doctor,as I had just lost my job in October due to downsizing and had no health insurance at that time. I developed a HUGE goiter in my neck and that is what finally made me go in ( I knew it was my thyroid then). Anyway, long story short, my blood tests came back at TSH <0.10 my Free T4 was 5.33 (0.55-1.12) and my Free T3 was > greater than 28.0 (2.0-3.5). I was told I need RAI ASAP. I had the RAI at Mayo at the end of January. My numbers dropped and dropped and I was feeling good (not great, but much better). I am now 8 months post RAI and my numbers are very close to where yours are currently. My TSH is still <0.10 and my Free T4 is now 1.09 and my Free T3 is 7.0. I feel good and have finally been able to get off of my beta blocker, but it seems like every 2 weeks my heart will go crazy and my thyroid will swell again, so I want all of that to quit and need to get back to normal. My primary care doctor says no more blood tests from her and that I need to go back to an Endo. to see what is going on. I am seeing the Endo. this Monday and have no doubt in my mind that I will request a second RAI. The anti – thyroid drugs scare me too! I realize that there is only a 1 or 2 percent chance of severe side effects, but I have been in that 1 & 2 percent many times in my life, so no way am I taking the chance with my liver. My ex-husband died of liver failure and I will not even subject myself to the minute chance of it…. I also look at it this way, the way my numbers dropped the first time, I should be hypo with a second RAI (and my current numbers) in about 4 weeks, so why stay on ATD’s for a year or so. This is just my opinion. Your story is wonderful and your wife is lucky to have a such a great husband. Keep us updated on your decision, I will be curious on what you decide.

[Pauline]

#1169335

Hello again,
Thank you so much for all of your help. My husband thinks I’m crazy for dwelling on this after getting 2 opinions–he feels that I should take the recommendations of my doctors. Maybe he is right…. Anyway, I was unable to speak to doctor #1–we have been playing telephone tag– but the bottom line is that she is adamently for RAI. My second doctor did put me at ease about medication, but it is not her first choice for treatment. I spoke again to doctor #2, who this time, also recommend RAI–but said again that she felt that I could wait if I wanted to (with monitoring and beta blockers), with minimal short-term ill effects, since my condition is "mild." Her reason for recommending RAI now was that, because of my age (52), she felt that there was a very small chance that I would go into remission on my own. She also felt that it was better to do the RAI now because I was otherwise healthy, and would respond well to the treatment. She said that if I waited and developed other medical problems, it would complicate treatment. She also talked about possible bone loss and heart problems if I waited too long, espeically since I was most-likely pre-menopausal.

So, here is my pro and con list, which is not giving me any comfort:
ATPs: Pro–reversable; Cons–side affects; may have to do RAI later; need to be closely monitored
RAI: Pro–reduces thyroid levels permanantly; Cons–small exposure to radiation; become hypothyroid; non-reversable
Wait: Pro–allows me time to make lifestyle changes; possible remission; Cons–may eventually need RAI or ATP anyway; bone loss and heart problems
Did I leave anything out?

My T4 and T3 levels appear to be normal (T4 Free 1.5 [range .8-1.8]; T3 Total 115 [range 76-181]) with low TSH (.02). I have antibodies for Graves and Hashimoto’s and high uptake on the RAI-U. Wouldn’t this put me in a subclinical category for Graves? Is it usual to use such permanant treatment in this case? Would it be unwise to wait, or should I go ahead with treatment? If I decide to do RAI, I need to decide soon, as my doctor said that my RAI-U test "expires" next week.
What would your advice be? Thanks. Pauline

[Kimberly]

#1169336

Hello – Sorry, I didn’t realize you were dealing with subclinical hyperthyroidism as opposed to “overt” hyperthyroidism. The American Thyroid Association and American Association of Clinical Endocrinologists released some guidance earlier this year on treating subclinical hyperthyroidism. Here is a quick excerpt:

"When TSH is persistently <0.1 mU/L, treatment of SH should be strongly considered in all individuals >=65 years
of age, and in postmenopausal women who are not on estrogens or bisphosphonates; patients with cardiac risk
factors, heart disease or osteoporosis; and individuals with hyperthyroid symptoms."

"When TSH is persistently below the lower limit of normal but _0.1 mU/L, treatment of SH should be considered in
individuals >=65 years of age and in patients with cardiac disease or symptoms of hyperthyroidism."

In the first category, the guidance says treatment should be “strongly considered”; whereas in the second category, the guidance says treatment should be “considered”.

This probably just muddies up your “pro” and “con” list – but it might be worth asking the two doctors about the AACE/ATA guidance.

[Pauline]

#1169337

The guidelines you mentioned are for older adults >60 years old, and I am 52. Would the recommendations be different for younger people. I was monitored for 4-5 months by doctor #1 before she recommended treatment. I did bring up the subclinical issue with doctor #2, and her reply, as I said before, was that I could wait, but it is unlikely that I will go into remission. She feels that I will eventually need it, so why not do it now. She is also concerned about bone loss and heart issues as I go through menapause. Both doctors are recommending RAI, so I am strongly considering it, I am very worried about it. Thanks. Pauline

[Kimberly]

#1169338

Hello – Age is just one of the criteria in the above recommendations; there are other criteria as well (patients with hyperthyroid symptoms, cardiac risk factors, etc.). If you don’t fall into *any* of these categories, the general practice is to "watch and wait" to see if your Free T3/T4 levels end up becoming too high…and respond with treatment at that time.

This is a decision that you will need to make in conjunction with your doctor, though.

[Pauline]

#1169339

Hello Kimberly,
In terms of symptoms, I do have some "minor" symptoms. I do often feel warm (or could it be menapause?), have been feeling occasionally breathless upon exertion, occasionally have mild heart palpitations, and have a subtle hand tremor. But generally I feel well. Would this constitute symptoms that would warrent RAI?

I do feel under the gun about this because of the expiration of the RAI-U test. I have to have it next week, if I don’t want to do the tests again. If I had know that there was a time limit before I did the test, I would have waited until I knew what I wanted to do. I thought that it was just another diagnostic test. (But that’s not really important now.)

Thanks again. You have been so helpful–a voice of reason in this process.
Susan

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