[calbears1156]

#1060448

Hi there-
I’m new to GDTF. Like many of you, I’m coping with Graves disease and the frustrations of trying to ‘regulate’ my thyroid from overproduction to ‘under’ production. It’s tiresome.

Back in August 2013 after a ‘thyroid storm’ (I didn’t know what it was let alone what I was having) sent me to the ER. I had been experiencing extreme anxiety, panic and bouts of depression coupled with fast heart rate, palpitations, night sweats fatigue, insomnia, weakened muscles; I was always hot and my skin was always moist. After repeated visits to the Dr’s office to ask what was going on I was told ‘it’s stress- your anxious here’s some xanx’ along with a variety of other anti-anxiety and anti-depression medications.

The day I landed in the ER I had JUST talked to my Dr the day before and was given a RX of lexipro to treat and calm down the symptoms of my supposed anxiety. I was walking through the airport and felt horrific heart flutters and rapid heart rate; I was dizzy and didn’t feel right. I stopped to catch my breath and began walking again and the flutters and rapid heart rate started again. I literally thought and felt I was having a heart attack. I decided to go to the ER to have it looked at and they of course ran every test they could do and found nothing wrong. 4 hours at the ER I was given yet another anti-anxiety pill that put me out until the next day which when I awoken I was not satisfied with my situation as being anxiety.

I decided to seek out a board certified experienced cardiologist who can truly assess my situation and of course he did. He had me undergo a series of test along with a blood test to check my thyroid which he said my neck was swollen and had tale-tale signs of thyroid matter. My blood test came back positive and my T3, T4 and TSH levels were OFF THE CHART. He referred me to an endocrinologist who then diagnosed me with hyperthyroid; after an ultrasound of my thyroid lead into another diagnoses of Graves.

Since then trying to regulate my levels with methimizole and atenenol has been a struggle. My right thyroid is more swollen than my left and has grown 20% from my last ultrasound that I had in January. The thyroiditis I have is another daily monster I deal with.

I had blood taken yesterday and the labs came back not in my favor; I’m now under-producing TSH…….. another day in thyroid paradise.

My husband and daughter DO NOT understand what I live with on a day to day basis; I have no one to talk to that can understand what I’m going through.

[Kimberly]

#1182677

Hello and welcome! This is a great place for information and support.

Sorry to hear that you spent so much time being misdiagnosed – unfortunately, that can be common with Graves’ patients. If you have a moment, I hope you will drop a line to the docs who tried to treat you with anti-depressants and anti-anxiety meds. They should know that could literally have been a fatal mistake if you hadn’t been persistent enough to see the cardiologist!

Hopefully, your new doc is aware of the medical guidelines on the treatment of hyperthyroidism. TSH is not a good benchmark for monitoring anti-thyroid meds early in the process, as it can stay suppressed for quite some time. Free T4 and T3 are the best measures right now to determine if your dose of meds needs to be adjusted. If you are interested, you can check out the whole guidance in the “Treatment Options” thread.

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

[calbears1156]

#1182678

Kimberly-
Thank you for your reply. My Dr always looks at free T3 and T4 on my lab reports which I have done every 6-8 weeks. When I got my recent labs back on Tuesday he noticed I’m now under producing.

I was taking 12.5 mg of Methimizole and have now been scaled back to 10 mg. I’ve gone up and down and up and down. The past 2 weeks I had been feeling sluggish no appetite and my mood definitely changed and I’ve also lost weight. When I first became diagnosed with Graves I lost weight and once the Methimizole kicked in 3 weeks later I did see an difference in how I felt and started to put weight back on. I’ve lost A GREAT DEAL of muscle mass as I was a runner training for 2 half marathons.

As of 2 weeks ago I noticed weight loss again and that alone put me in a depressed state.

I’m so tired and I just want my thyroid regulated so I can get on with things. The everyday quality of life with graves is unpleasant. But then when my levels are good I feel amazing and forget I have graves and yet in the back of my mind I fear a relapse if I go into remission. I’ve given SERIOUS thought to surgery just to end the highs and lows but then realize if they were to remove it I’d have to go on synthroid and wait 6 months for level adjustments.

I just don’t know anymore.

Sad and tired in Henderson NV
Rene Vandyke Maloney

[snelsen]

#1182679

Hi Rene,
Of COURSE you want to feel good and get on with things.

Your symptoms of fatigue, sluggish, no appetite,) (which reminds me of hyPO,
but your weight loss reminds me of hypER. Your sure are bouncing all over the place with conflicting symptoms,a nd you feel crappy and hate it.
Then, when you feel good, it is easy to psychologically believe that you are done with Graves’. But intellectually, you deep down may know that you aren’t, as proven by how you feel, and your own experiences. I really am sorry.
All of this is very discouraging, ESPECIALLY COMBINED with the nightmare experiences, times many, that you had reaching a diagnosis. Plus the lack of understanding from your husband and daughter.

I am glad you have seriously considered a thyroidectomy. The first good news is that it is not at all typical to take six months to adjust the sythroid dose. One of the best things about it, is that the thyroid is GONE, thus aside for a possible amout of circulating hormone, which is gone in days, you are good to go for taking your thyroid hormone. Then it takes about six weeks, plus combined with your symptoms, but really six weeks is the amount of time to wait until labs. This COULD vary, according to your endo and surgeon. Possible they might want a lab earlier. But I have not heard of anyone who had the experience of messing around for 6 months to get to that “sweet spot.”
Perhaps it is time to consult with a surgeon, after you carefully look around for the right one. Your endo may know Generally, a major medical center is where you want to be, where everyone is familiar with the surgery There are some wonderful posts on the path people took to get to that decision, and accurate descriptions of each day and step along the way.
I will send a PM to you. I ‘d be HAPPY to talk or write to your husband and daughter, and I am sure others would, too

THIS WILL BE BETTER. YOU WILL BE BACK TO BASELINE. AND GRAVES’ IS TERRIBLE, I WOULD NOT WISH IT ON ANYONE. But really, you will end up being yourself, feeling good, and running 1/2 marathons!!

Shirley

[calbears1156]

#1182680

Hi Shirley-
Thank you for your response. Yes, I am and have been bouncing all over the place with trying to regulate my levels. On May 12th the Dr was ‘pleased’ with my levels and suggested I stay on course taking 12.5 mg of Methimizole which I follow Dr’s instructions carefully. I had actually at that point been feeling good. His only concern was my right thyroid gland had grown (I had an ultrasound that day) 20% more from January and the nodules were still VERY small- in other words no further growth which was good to know.

He said it was common for one gland to be larger than the other but 20% growth on the right gland seemed to be his focus. I asked him was there a reason to be concerned and he said no because the ultrasound showed no sign of cancer which was also GOOD NEWS.

He wants to see me back in 2 weeks rather than the usual 6 due to my yo-yo thyroid levels. They are keeping a watchful eye on them trying to get them under control which has been arduous and difficult.

As it sits right now my neck is VERY pronounced- it looks like my left gland is catching up with the right one. I’m so frustrated that I cried this morning because I’m not feeling good and I know why but it’s still a challenge.

What amazes me the most Shirley is HOW FAST the levels can change and throw everything off. I’m SO disappointed and with days like this makes me WANT THE SURGERY JUST TO BE DONE WITH THIS. But would I still be faced with the auto-immune aspect of graves IF I elected to have the surgery??????

I know there is NO QUICK FIX with any of the treatments available for graves and hyperthyroid other than it just ‘burning itself out’ which I’m curious to know if anyone has been lucky to have it happen to them. Naturally of course synthroid will have to be taken to supplement your own thyroid levels.

Has ANYONE out there experienced what I’m going through as well?????

Thank you SO MUCH….. it’s such a change of pace to be able to talk with people suffering and experiencing thyroid disease.

[Kimberly]

#1182681

Hello – Yes, you would still need to be aware of the autoimmune aspect of Graves’ post-surgery. Thyroid eye disease can still occur at any time and if you are planning a future pregnancy, your doc would need to know to do antibody testing to assess the risk of passing them on to the fetus. However, it’s not something that should generally affect your day-to-day life.

It certainly wouldn’t hurt to research whether you have a high-volume surgical center in your area (this is important to reduce the risk of complications) and to schedule a consult with a surgeon, just to be aware of your options.

It *is* possible for Graves’ patients to end up hypo without RAI or surgery. Some also have Hashimoto’s thyroiditis in addition to Graves’, which causes destruction of thyroid tissue to the point of eventually causing hypothyroidism. I saw one study that put this at around 15-20% of Graves’ patients. In other cases, the antibodies that cause Graves’ can block thyroid hormone production instead of stimulating it. But there is no specific timetable that I’ve seen for either of these issues occurring.

Hope that you can get some relief soon!

[scanders]

#1182682

Hi Rene,

I’m currently on the roller coaster, too, and quite frankly, I’m getting a little sick of it. Endo says I seem to be very sensitive to the methimazole, and now is wanting me to think about TT if I can’t get stabilized soon. It will be a year of treatment with MMI in September and while I’ve had normal labs, they just don’t stay that way. (You’re right, they can change in a hurry.) I, like you, feel kind of lousy at these lower levels, but endo is pleased they’re in the “normal” range. She did, however, agree to lower the dose just a smidge, as my brain fog makes it hard to function at work. I didn’t feel great when at the higher end of “normal”, either, but I could function better cognitively. (I’ve come to the conclusion that my normal range is narrower then the accepted “normal range”.) I am hanging on by my fingernails to the bottom of the “normal” range right now. I’m hoping I haven’t crossed over to overt hypothyroidism, as I did last time I got this low.(I don’t feel any better, maybe worse.) Then my antibodies doubled, as did my vision. Sigh…
So no, you’re not alone. (I try to be brave, but sometimes I could cry, too.)This whole patience thing is SO not my strong suit. And it’s very comforting to be able to come here and know that others know what you’re going through! Hang in there!

Christy

[calbears1156]

#1182683

Hi Christy!
It sounds we both have the exact similarities with our graves. I know how you must be feeling right now; I too am in a ‘lull’ with my thyroid situation which is currently down. Even though my Dr reduced my MM intake to 10 mg a dayI believe it still may be too much. I’m teetering on asking if I could go 5 mg but fear he won’t go for it.

Are you taking atenenol to help with your symptoms? I’m taking 27.5 mg (25 in the am and 2.5 in the evening) which has really helped the palpitations and rapid heart rate.

I know EXACTLY how you feel Christy with the impatience of getting your graves under control and hoping it stays that way however after much research I’ve read the only way you stay out of remission is either ablation or surgery.

May I ask when you were diagnosed and how long before it was finally discovered?

Keep your head up and THANK YOU for your encouragement- feel free to chat me up whenever you feel you’re thyroid crazy or emotional.

[scanders]

#1182684

I spent last summer thinking it was menopause, so accepted the symptoms as “normal”…except the weight loss. Having struggled with my weight my whole life, I should have known that I’d never lost an ounce without trying, let alone 20 pounds. I guess the weight loss didn’t look very good, since people were actually worried about me, so I went for a check up, where I had to point out this weight loss. I had some labs, and was sent the next day for an “urgent” referral to the endo. I was diagnosed right after Labor Day when the TRAb results came back. I’m pretty sure in hind sight that I had eye symptoms a good 6 months before the Graves symptoms. Of course, now I know that in no way, shape, or form was how I was feeling normal, but then, I may not have exactly been thinking clearly, not that I’m thinking much at all just now, either.

I’ve had atenolol on board a few times. Initially from my GP when the initial labs came back, then again when my levels became hyper for the second time. I got dizzy, but by that time the palpitations seemed pretty manageable without, and were certainly better than feeling like I was going to pass out or fall over.

We shouldn’t settle for not feeling our best, and with the ups and downs I guess we’re developing a frame of reference for where we don’t feel well, and eventually that can lead us to where we do feel well. And it’s good to know there’s another treatment option if the MMI just doesn’t do the trick (but I’m hoping it will.)

[terppsi]

#1182685

Hi Rene,

I recognized myself when I read your post, apart from the diagnosis nightmare. I was diagnosed last july, as I was suffering from very fast heart rate and weight loss. I was trying to loose weight so I did not notice at first ir was too much, not until people started looking at me as if I was going to die.
Everybody told me I would feel better after starting the meds but guess what? One year later I am still on a rollercoaster. I managed to get good values of FT4 in march and had shoulder surgery in april and the palpitations and fast heart rate restarted after that. We readjusted my meds (2,5mg methimazole 4 days a week and 5 mg 3 days a week) and since last week I feel the exhaustion again. Just to be takes too much energy.
I have been considering TT as my thyroid is very swollen and my endo does not advise RAI in my case. But the surgeon scared me away as he mentioned I might never be able to sing again, and he gave me the example of Julie Andrews. I know it is only a one percent chance, but singing is one of the things I enjoy the most in my life so I am having a hard time making a decision.

Virginia

[Kimberly]

#1182686

@Virginia – You might be interested in this research on professional singers and thyroidectomy. Dr. Randolph presented these findings at the American Association of Clinical Endocrinologists annual meeting; he also spoke at the GDATF seminar held last month at Mass Eye & Ear Infirmary in Boston!

(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://media.aace.com/press-release/professional-voice-users-benefit-nerve-monitoring-during-thyroid-removal-surgery

Hope that this is helpful!

[terppsi]

#1182687

@Kimberly Thanks, it does help a bit. What the surgeon had told me was that some people have more than one laryngeal nerve, and in those cases there is a higher possibility of nerve damage. And it was impossible to know before cutting you open.

Virginia

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