[smtucker]

#1059549

I have spent the past few days working my way through the posts on this forum, and now it is time to introduce myself. My experience with Grave’s Disease seems so very different than anyone else’s I actually find myself hesitant to join in.

During a routine yearly exam, my new primary included the TSH. The results were low. I guess they were really low. The next set of blood panels were normal. I was sent to a specialist who proclaimed Graves within 1 minute of meeting me. The idea that I was hyperthyroid is/was laughable to me. I am totally asymptomatic. That was almost a year ago. More recent blood tests indicate that my TSH, and those Free ones are all over the map. The thyroid uptake scan seems to be my final confirmation. Reluctantly, I am ready to accept that I have Graves Disease with an absence of symptoms.

To be honest, I am pretty angry that I am adding yet another disease to my ever-growing list of diagnoses. A year ago, I came off an estrogen suppression drug. I was finally taking off the weight gain I had while on this steroid-enabled drug. It was and is really hard to do this after having every bit of estrogen stripped from my body. And now this doctor says this was a sign of Graves?

I have started on the methimazole. Today was my second dose. I have started with 10mg, taken once a day with lunch. It is making my stomach reel. My hope is that as my body gets used to this drug, my stomach will calm down.

As I read the other stories on this forum, I am grateful that I haven’t had the anxiety, rage, or lack of concentration. Thank you to everyone that has written. It has helped me to read other’s experiences.

[Kimberly]

#1175617

Hello and welcome. I’m sorry to hear about your diagnosis, but I’m glad that you found us. This forum is a great place to share experiences, information, and to give/get support.

I was diagnosed myself during a routine checkup and initially didn’t think I was having symptoms, but upon further reflection, realized that I had been dealing with issues such as hand tremors, insomnia, and sweating. I had just found reasons to write all of these off, such as work stress and too much coffee.

I initially experienced stomach upset while taking the methimazole, but I got some relief from taking it with food/milk…hopefully, you will see things settle down soon.

Take care!

[smtucker]

#1175618

A question. Is there any reason the dose is 10mg a day instead of 5mg twice a day? Would that help with my nausea?

[gatorgirly]

#1175619

Sorry to have to welcome you to the club, but welcome. It’s interesting you mention this because my dad was just diagnosed with hyperthyroidism last week at the age of 62…without symptoms. He gets his TSH checked every year and this year, his primary care physician called him back and said he has hyperthyroidism and sent him to my endo (now our endo) who ran more labs and confirmed it.

His uptake is coming up soon, but since I was diagnosed with Graves’ in 2012, our endo is pretty sure he has it, too. He survived a massive heart attack in 2007 – his only symptoms were flu-like ones, so I’m tempted to believe he just doesn’t recognize his body’s messages the way I do.

Have you look at the (very long) list of symptoms? I had no idea what Graves’ was before my diagnosis but it finally made sense when I was diagnosed during a hospitalization for a “stuck” resting heart rate of 150-something. Six months earlier, I was convinced I had a tapeworm due to an insatiable appetite despite rapid weight loss, but my doctor tested my stool and said I was fine (never ran any labs). Maybe seeing the list will help you accept the diagnosis if some of them apply…?

[smtucker]

#1175620

Gator,

Thank you very much for the welcome.

I have read all of the symptom lists for both hyper and hypo conditions. I fit the hypo far more readily. I am fairly familiar with Graves since my sister has it. I can almost see your eyes light up. My endo’s certainly did. But she had all the symptoms. She has had two eye surgeries, and though technically her thyroid is now in the “normal” range, she once again can’t close her eyes when she sleeps.

The anti-estrogen drugs cause side effects that actually mirror some of the Graves disease symptoms. I feel my body rather acutely, hence my surprise at this diagnosis. I did weigh my physical metabolism too highly. I have always gained weight very easily. After menopause at age 38, all efforts to loose weight were hopeless. Then with the cancer, 7 years of steroids, and the removal of all estrogen, it only got worse.

So, I am here. I have this disease. I’m not happy about it. I will be compliant. If my endo had even a smidgen of humor, it might be a bit easier.

Again, thank you for the welcome.

[snelsen]

#1175621

Regarding nausea and the antithyroid drug, I’d ask the endo or the pharmacist, probably the endo. You know, the one without a sense of humor!? Maybe a divided dose would help you with the nausea?

Holy moly, seven years of steroids! I hate that drug. And I thought I was suffering cause I had it a month plus the taper. But the dose was high, 60mgm/day, for optic neuropathy, related to thyroid eye disease.

I sure hear you, about being sick and tired of being sick and tired!

It’s tough to be told you have Graves’ when you don’t seem to have the truckload of symptoms that come with being hyper. That makes it a double whammy.

Re weight, it is my understanding, that all females, Graves’ or no graves, tend to pick up some pounds after menopause. Whatever that is worth.

Welcome to the boards. You will have so many new friends on this forum.
Shirley

[Kimberly]

#1175622

@gatorgirly – WOW, so sorry to hear that your dad is dealing with this, but glad that they at least caught the issue with a TSH test. Please keep us posted.

@smtucker – It’s not *required* that methimazole/Tapazole be taken in divided doses, but many docs recommend splitting the dose up anyway (mine does). It’s certainly worth discussing with your own doc to see if this might give you some relief from the nausea symptoms.

[catstuart7]

#1175623

Smtucker, welcome but sorry you have to join us. Absolutely methimazole should be divided into twice daily doses. It has a half-life of 4-6 hours, so if you take it once a day in the later half of the day you hardly have any effect and it can bounce you around. If you are ever on PTU, you’ll need to take that three times a day. I don’t get it why there is such inconsistency in the recommendation of the dosing. My original endo who proposed I take my entire PTU dose once a day was a bit put off when I wanted to divide it into three doses, but basically said it was my choice.

Also, have you have any antibody tests run? Specifically TSI or TRab? TSI is the definitive test for Graves. Has your doctor ruled out other causes of thyrotoxicosis other than Graves such as Hashitoxicosis or a “hot nodule”? Just a few things to check on if you still feel unconvinced about your Graves diagnosis.

Gee, I must be a bit hyper today….I’ve typing like a maniac.

@gatorgirl – I too am sorry to hear about your father. At least you’ve blazed the trail for him and he can benefit from all your experiences.

[smtucker]

#1175624

Cat,

Thank you for the welcome. I did speak with the Endo yesterday and she was surprised that I was having such strong nausea. We agreed that I will split the pill and take it will lunch and dinner. She says if I continue to have nausea on Monday, we will reduce the dose.

I have had a bunch of tests and will post the results. My hospital website seems to be down and that is where all of my records are kept. (Love this portal. Hasn’t been down since 2005 so something weird is going on.) I had an anti-body test that was positive, Free4 and Free3, TSH. Maybe more.

I am still trying to figure out all the shorthand acronyms on this site. Need to create a cheat sheet! Have no idea what PTU or TT is yet. But I will!

Your thoughts are interesting, and I promise to post back some numbers when I can get to them.

[snelsen]

#1175625

Hi, well, it is easy to understand why the acronyms associated with Graves’ are not part of your DNA!!! And better yet, there is no test!
TT=total thyroidectomy
PTU=propylthiouracil, on of the two ATD’s (anti thyroid drugs.) in the U.S.
MMI=methimazole, the other ATD (in the U.S.)
TED=thyroid eye disease. This happens to some people who have Graves’. TED ranges from mild eye symptoms, red eyes, scratchy eyes, dry eyes, light sensitive, to more life changing symptoms, like double vision. It can happen any time, even decades later.

These are the three that you will see all the time.
Occasionally, you might see ATD, for anti thyroid drug (like Synthroid.)

Welcome to this crazy world. On thing that is reassuring is that most of the people on this board are in some phase of Graves’ the diagnosis, management of symptoms, and treatment. When they get stablized, and life is back to normal, or their new normal, they don’t write on the board anymore or check it very often.
Shirley

[smtucker]

#1175626

I am now on day 8 of the meds and haven’t noticed much difference in how I am feeling. I am on a Phase II study for something else which ends tomorrow, so I will be eliminating that med. Maybe that will help me assess how my body is responding. I do like the Atenalol. It seems to take the edge off of life, which isn’t such a bad thing. I have been on that for 14 days. The nausea from the Methmazole is helped with infusions of DanActive and I believe that my body is learning how to cope. My stomach only reels for a short time after taking now.

Is it helpful to post our numbers? I still don’t truly understand how they correspond to how I feel, or how our Endo’s determine what is right for us.

I get another set of bloodwork on Thursday which could be interesting.

[Kimberly]

#1175627

@smtucker – You are welcome to post lab results here if you like. However, this site is a little different from others on the Internet, in that the GDATF does not believe that this forum should be used to give medical advice — which includes making a specific diagnosis, interpreting labs, or making dosing recommendations. This is because we are fellow patients here, not docs — and also because we do not know your full medical history, such as other conditions, meds you are taking, etc.. Here is some general info, though, which will hopefully be helpful:

T3 and T4 represent the actual levels of thyroid hormone circulating in your body. T3 is the more powerful and active hormone of the two. Some tests will measure the amount of T3 or T4 that are not bound up by proteins, and therefore available for the body to use. These are referred to as “Free T3” and “Free T4”.

TSH is a substance produced by the pituitary gland that either directs the thyroid gland to produce more hormone or tells the body to put the brakes on thyroid hormone production. When things are working properly, the amount of TSH produced by the pituitary depends on a “feedback loop” according to where our T3 and T4 are. If T3/T4 levels are *low*, you should see the TSH levels *increase* in order to prod the thyroid gland to make more hormone. If T3/T4 levels are *high*, then you will see TSH decrease to tell the body to stop making more thyroid hormone.

One caution is that in Graves’ patients, TSH can remain suppressed for quite some time after treatment, so it’s important for our doctors to look at T3/T4 levels in making treatment decisions. You can read more on this in the “Treatment Options” thread in the announcements section of this forum.

Take care!

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