[moonbeam327]

#1060042

Well I’m still waiting for tsi .. but everything else points to graves..

free t4 was 2.06 but went up to 3.41 in two weeks
tsh <.01
THYROGLOBULIN AB 27
ultrasound had mottled gray spots she said looked more like graves

waiting on TSI

Dr wanted a scan but I’m starting with TSI first if treatment will remain the same regardless.

I’m on 10 mg prop as needed.
I was supposed to take 10mg of methimazole each day but she told me to start with 20 now since my t4 went up in 2 weeks (from when my pcp got the thyroid tests done and when i saw the endocrinologist yesterday)

Anyone have experience with free t4 rising quickly like that?

I actually didn’t know anything was wrong with me. I was on vacation 3 weeks ago.. happy as a clam. Went in to get a tb test to volunteer at my childs preschool when my pcp noticed my thyroid gland was bigger on one side and visable.

So after getting my blood work and “dr. googling” everything i suspected graves and since my anxiety and depression over my diagnosis is making me crazy and now i actually have “graves” symptoms palpitations higher blood pressure fast heart beat… i pretty much sure what i am feeling now is do to the high anxiety I feel.

I think what I hate most about this is not know why it happened or what is causing it.. so treating the symptoms and not the cause drives me crazy .. but there is no other option.

Hanging on to the hope that methimazole works and might put me into remission if i tolerated it and don’t have side effects.

I’ve been having i problems (pain behind my eyes and I can’t stand bright light in darkness- tv on in a dark room, driving at night, although bright daylight is fine) Endo said this is not graves eyes but no one including 2 optomitrist have any idea why I’m getting this pain in my eyes.

Sorry for babbling.. going to search around on the forum and learn about others personal experiences.

Trying to figure out if I should try to do something complementary to the medication to increase the chance of remission.

~Moonbeam

[QZZznne]

#1179862

You will be fine if you hang out here with these great people. You learn so much and you feel like your not alone. As far as finding out the “why”, it isn’t going to happen. I recently asked that question in a post called “causes” and got some great responses so check it out.

Suzzanne;)

[misslex]

#1179863

Hi Moonbeam,

Welcome! I’m sorry to hear you’re in the same boat as the rest of us. I know it’s a shock to be diagnosed. I’m still reeling from my own diagnosis. The best advice I can recommend to you is to try to take it one step at a time and relax. Don’t allow yourself to spin out of control with worries, and be prepared for things to go slowly. I was diagnosed for sure in April after a sonogram of my thyroid and a Radioactive Iodine Uptake test. In that time I have:

– Been put on 10 mg/day of MMI
– Had to stop the MMI due to my eyelid swelling up after 3 weeks of great results
– Started 50 mg/day of PTU
– Had to stop after 1 week because of mouth ulcers
– Been put on 5 mg of MMI and an antihistamine every other day – waiting to see if there will be a reaction

It’s super frustrating and anxiety inducing, but with some patience and time, your doctor should be able to help you get to a point where you’re feeling good and the chances of approaching remission are better. Best of luck to you and feel free to lean on us – we’re all going through the same thing here.

[Kimberly]

#1179864

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

As you go through this stressful period of awaiting a definitive diagnosis, it’s helpful to build some down time into your day and try and focus on activities that bring you joy. Examples might include meditation, gentle yoga, reading, or watching funny movies.

In terms of the eye issues, although *some* optometrists are familiar with thyroid eye disease, I would say that the majority are not. If you do end up getting diagnosed with Graves’ (the most common cause of hyperthyroidism) or Hashimoto’s thyroiditis (which can cause temporary hyperthyroidism), an experienced ophthalmologist can help you sort out whether the pain and sensitivity you are experiencing are related.

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

[Boomer]

#1179865

Welcome to the forum Moonbeam!

We call one of my closest friends Moonbeam too!

I thought I had the market cornered on babbling. Watch out- I wll not give up my title easily…

Glad you found this place- I’ve gotten the best most straight-forward answers here and that’s a big comfort. They say that ignorance is bliss but the more I know and understand about this the better I feel mentally and emotionally. I was in the dark prior to being diagnosed and it was scary! I was actually relieved to finally have some answers. Happy about it? Heck no but at least I was no longer wondering what the heck was going on with me.

My endo started me on a very high dose of Methimazole too- I think the object is to “shock” the thyroid into slowing down. I was able to lower my initial dose but ended up going right back up high again. Apparantly this is “normal” in that there seems to be no one-size-fits-all due to so many variables.

Hang in there, be patient, ask any questions that might come up, and use the search function here as chances are it’s already been discussed- what a great resource!

Looking forward to seeing you around as we travel this road alone together

Health and love to all,

Boomer

[karenz516]

#1179866

Hi Moonbeam, I could not have said it any better than everyone already has. Welcome to your new “graves family”, it sucks for all of us, but we help each other and that in and of itself is comforting!

Karen

[snelsen]

#1179867

Moonbeam
I second Karen’s thoughts, and welcome you to the forum.
Agree with Kimberly that you should scout around and find an ophthalmologist or a neuro-opthalmologist who “knows” TED (thyroid eye disease) to do a thorough and appropriate exam of your eyes. This will be valuable information as a baseline exam, if indeed you do have some eye issues.
In addition, eye pain should always be treated with a degree of concern, and there could be other reasons for your eye discomfort.

My own experience is that bright light bothered me a lot, the sunlight, too. But I did not have eye pain with TED until I was in the severe part of the disease, and had double vision, then the eye pain was associated with the eye muscles, when i tried to look certain directions.
Shirley

[ChristinaDe]

#1179868

Moonbeam ~ LOVE that screen name!!! And welcome!

I’ve never experienced a rapid change in T4 (that I know of), but anything’s possible in Graves’ it seems. Does make me wonder now if that was something that was happening over the years tho. I didn’t know until after the fact that I actually had Graves’s for over a decade. Sometimes I was “fine” and sometimes, like when I was under stress, I’d have all kinds of crazy symptoms, but would eventually be “fine” again. So now I wonder if stress was raising my T4 & perhaps exacerbating my symptoms and I just didn’t know it. Hmmm. Interesting thought.

The eye thing. I had similar symptoms. An ache in my left eye. Sore and scratchy. Sensitive to light. Swelling. Large bag underneath. Dry eyes. My primary care, ophthalmologist, and endo all said that it wasn’t Graves’. My surgeon took one look and thought it might be. Referred me to a neuro ophthalmologist who said it was. There was nothing to do for it except wear sunglasses outside and take eye drops without preservatives. Helped with the soreness and dryness, but not with the swelling.

But here’s what I’ve noticed. If my thyroid levels are abnormal – doesn’t matter whether it’s hypo or hyper – my eyes get worse. Now that my thyroid is out and my levels are normal, my eye is way better. The eye specialist says that my case is very minor and to give it a year of normal levels…that I may see a complete remission. Hoping so. But so far the swelling is already way down, and the soreness is completely gone. Still a teeny bit dry, but eye drops are my new best friend. And the eye bag is so much smaller. Whew! So there was nothing they could do – but it felt better to know that someone was monitoring things and had a baseline.

As far as doing things to help yourself along while you go through medical treatment…here’s what worked for me:

* Avoid stress, although the diagnosis and treatments are stressful in their own right! But avoid outside stressors whenever possible. At least for now.

* Eat as healthy as you can, sleep as best you can. Listen to your body. And keep a log. It can help your doctor with dosing decisions & can help you understand what exacerbates your situation and what helps it.

* Learn ALL you can, but stick to rational sites and people. (This is the only place that I found that qualified, and it helped me more with the emotional aspects than any doctor I’ve seen to date).

* Don’t be afraid to question your doctors and to change doctors if you later find that one of yours isn’t a good fit for you.

* And BELIEVE. That you will get better. That the anxiety will decrease. That there is life after a Graves’ diagnosis.

I am 6 months post official diagnosis, 4 1/2 months post-TT, 3 1/2 weeks with normal and stable thyroid levels & I am here to say that I feel better than I did before diagnosis. Mentally, physically & emotionally!! But also know that there are no overnight fixes, some tough decisions along the way. It’s a bit of a journey. And it’s months, not weeks. Once I realized that and learned to take it one step at a time I began to mark my recovery in baby steps. Like celebrating the day I went from 4 prescriptions to 1!! Little stuff. When I say months, I don’t mean that there was no improvement along the way & it all felt like you do today. (Don’t want to panic you!) Truth is, I felt better at 1 month than I did at diagnosis, much better at month 2 than month 1, etc. And suddenly, I felt great!

I wish you well…and kudos for finding this forum so quickly. It’s an amazing place full of amazing people!

Gee, I’m long-winded today. Sorry about that.

Christina

[karenz516]

#1179869

@Moonbeam and ChristinaDe, great advice by Christina, I keep a journal and write down all my questions for my endo and then after my visit I write down everything we talked about and take a copy of all my lab work and keep in the back of my journal so I can check where I am it. You have to be your own advocate, some great advice by everyone on this site, sometimes its humor, sometimes its just knowing your not alone.

Karen

[moonbeam327]

#1179870

Thanks everyone for all the support. Hanging in there and trying to reduce stresses that surround me!

[Author]

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