[ninjamei]

#1060553

Hey all..

I’m new to the forum, and to Graves/hyperthyroidism as well. My name’s Chrissy, I live in Baltimore, MD. I’m a full-time student, work full time at a plumbing company, work part time on campus, have a 9 year old daughter and a supportive husband…and I and am a Graves’/hyperthyroid patient.. (wow, that felt like an AA intro. lol)

My journey so far is as follows.. in September 2014, I went to my gyn for my annual check up and was talking to her about problems I had been having (very heavy periods, awful cramps, etc.. sorry for TMI..), and she ordered labs and said she was going to check my thyroid. Lo and behold, my results came back abnormal (in her words, VERY hyperthyroid), and she suggested speaking with my primary. I printed out my labs with reference ranges and scheduled an appointment. My primary completely dismissed me and my concerns, briefly looked at my labs and said they were fine and sent me on my way. She never even examined me or felt my neck, which you could visibly see was swollen and tender.. but, I digress..

Fast forward a week later… I’m awoken in the middle of the night by horrible chest pain that radiated to my back. I honestly thought I was having a heart attack. I woke up, and the bed was soaked… my hands were trembling.. I told my SO that I needed to go to the ER because I thought I was having a heart attack. After sitting in the ER for 8 hours and having many vials of blood drawn/EKG’s done, I was admitted. I was put on the cardiac floor and they did a stress test, etc… that came back ok, thankfully. I met with the endo oncall and she said I was lucky I came in when I did, because I was close to being in a thyroid storm because of my levels, etc. (But, I was fine according to my dr.. /sarcasm. lol)

I had a needle biopsy done on 10/17 and luckily that came back ok… my current endo just has me on ATD- methimazole 10mg 3x/day and propranolol 20mg 3x/day… still feeling pretty hyper. I refuse to take RAI due to personal reasons, and am looking into surgical options. I am very worried about surgery, but I feel that the benefits would probably outweigh the risks/side effects.

I am just having issues with the emotional outbursts and what AzGravesGuy (Forgive me if I got the screenname wrong!) coined “Graves’ Rage”… I feel a little more stable than before, but still pretty rage-y.

Also, I would love to know what exercise I can do… (I don’t run, so that’s not an issue. lol.) I just can’t handle walking from the car to our apartment without my legs feeling like jello and being winded.

Anyway… sorry for the long-winded post! Thank you all for sharing your stories and giving me hope when I felt that there was none. I look forward to chatting with you all in the future! Namaste!
~Chrissy

[Kimberly]

#1183267

Hello and welcome! Wow, that’s good that you took things into your own hands and visited the ER *before* you got to a thyroid storm!

Anti-Thyroid Drugs (like methimazole) start working right away to block the production of new thyroid hormone, but it can take some time for the body to “burn off” its existing stores of excess thyroid hormone. This can typically take a few weeks, after which should *start* to see some relief from her symptoms – including the emotional ups and downs. The beta blockers provide more immediate relief from symptoms like tremors and rapid heart rate, although they don’t control the hyperthyroidism itself.

In terms of exercise, I would check with your doctor on this. It sounds like you had a pretty extreme case before finally being diagnosed, so I would rule out anything that will get your heart rate too high for now. Activities like slow walks, gentle yoga or tai chi might be good, but again, double-check with your doctor.

Take care – and please keep us posted!

[barbra]

#1183268

Hi Chrissy,

Like Kimberly said it’s a good thing that you realized the seriousness of your situation. Unfortunately, sometimes we have to assert ourselves to get the attention we need. As you found out with your primary. Try to keep track of your labs, get hard copies. Push for what you need to get better, or find another doctor who will pay attention to your concerns.
Compare the treatment options and choose whichever you feel comfortable with. Some of us did the RAI and others went with the TT, and then some are staying with the medications.

With time and patience you’ll get better and start to feel normal again, but you have to be patient and give it the time. I know you are miserable, we all are or were in your shoes. We are here and are listening and understand so keep in touch.

Hugs.
Barbra.

[Liz1967]

#1183269

I had a total thyroidectomy and it was no problem at all, uneventful surgery and very quick recovery. Thyroid storm is bad news, glad you avoided it.

[swhited]

#1183270

Hi Chrissy,
Wow! I’m glad you listened to yourself and got the ER and they took care of you. I actually ended up in the ER (August 2014)and they sent me home saying I probably just had fluid on my lungs, fast forward a month later-thyroid storm!

I know exactly how bad you are feeling right now. I understand your decision to do anti thyroid meds/beta blocker for now instead of RAI. I am also doing anti thyroid meds plus beta blocker. It took a good four weeks to not feel so hyper all the time. I still occasionally have some hyper symptoms, but now after 7 weeks they come less and less frequently. Now that I finally know some things (read the links at the top of the forum on treatment options- they are extremely helpful) I feel more empowered to insist on what I need(somewhat)

I am always armed with my lab numbers including T3, T4, and TRAb. I even keep the uptake scan numbers with me at any appt. Having this has helped tremendously- I had to talk to the cardiologist just recently. Hyperthyroidism scares most doctors enough that once presented with these numbers they have slowed down, actually taken a seat, listened and asked follow-up questions. I knew something was wrong for several years, but I didn’t know what and was repeatedly dismissed. Now sadly after a thyroid storm episode- they are listening. If you don’t have a doctor that is listening, look for another as exhausting as that option is.
Seven weeks post storm, I feel loads, but not completely better. Luckily, my endo insisted on bed rest even though it sounded extreme. I am lucky that I have a job and insurance that allowed three weeks and days here and there even now to rest. I know this isn’t the norm and probably rare, but look into it and if you can I recommend it. It was hard and I thought I’d lose my mind as I was very jumpy from the hyper effects. It took that long just to begin to come down to normal.
Something important I’d like to convey is after being hyperthyroid for soooo long, I’m pretty sure my body doesn’t know anymore how to function at a normal level, so as it relearns I have to be patient and careful not to overdo and set recovery back. Listen to yourself and your body. You did it when you knew you had to get to the ER and you are the best at knowing what you and your body need.
Also, watch out for an emotional drop. Some days I feel downright despondent and others I feel like I need to. Quit whining. I think that’s the thyroid talking and so I try to take what it says with a grain of salt, keep a sense of humor, and reach out to family and friends whenever I can.
I wish you the best and I hope the medication begins making a difference for you.

[ninjamei]

#1183271

Hi everyone,

Thank you so much for the welcome! I just had labwork done yesterday, so hopefully I will have the results in the next few days… let’s pray my numbers go down!!

swhited- My endo had me on bedrest, but unfortunately I begged him to release me back to work… I don’t have any sick time and haven’t been here quite long enough for leave under FMLA or our company’s short term disability. Ugh. His condition was that if my numbers aren’t where he wants them to be, he is taking me out of work again… it’s so frustrating, because my husband is on SSI and barely gets enough to pay our rent, so I work two jobs (and go to college in between somehow. lol) to stay afloat. I’ve got my fingers, toes, and everything else crossed that my numbers have lowered…

I was given the number to a neuro opthomologist (spelling), so I will be calling them on Monday… I’ve noticed blurry and double vision going on in my left eye. I have yet to find a primary that can see me before February, though. The search continues… lol.

Anyway, thank you all for your words and I will update when I get my numbers.

Peace,
Chrissy

[snelsen]

#1183272

Yes, do write again. bedrest seems a bit much to me! But save exercising for later on. Save what energy you have (I know it is not a lot) for what you HAVE to do, like keep your job.

A neuro-opthalmologist the BEST IDEA and option for your eyes. Do not be surprised if there is wait for the appointment. If your mention your symptoms, that you have Graves, and have TED (thyroid eye disease) cause you probably do, you will probably get an earlier appointment.

Shirley
(who has had it all, done it all!)

[Kimberly]

#1183273

Hello – Hoping that you get good news on the lab results!

While you are waiting to get in to the neuro-opthalmologist, you might check out this video on the management of dry eye. It’s common in Graves’ and can actually result in compromised vision.

(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)

https://www.youtube.com/watch?v=xat5SBU_1_c&list=UUONJaoWexqoz1cr6m5313Dw

We had a seminar on kids and Graves’ in Philadelphia last month, and one interesting thing that I’d never heard is that dry eyes alone can affect your vision one line on the eye chart!

The evaluation with the neuro-oph is important, but in the meantime, make sure that you are taking good care of your eyes if they are dry!

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