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in reply to: Agranulocytosis?? #1184200

My doctor instructed me to call with any sore throat or fever, and to keep the threshold low. I’d rather have labs and find out there is nothing going on than to get seriously sick.

Feel better!

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in reply to: Another #greaterthangraves story #1183965

Love reading this. It gives me hope.

For many years I was a runner, completing many 5Ks a smattering of 10Ks (which became my favorite distance), and several half marathons. Graves has taken this from me. With a resting heart rate in the 90s most days, yes on a beta blocker, it doesn’t feel safe to me to run anymore. Add in that when I wash my kitchen floor I am left shaking, out of breath, and with a racing heart feeling spent beyond spent, and it demonstrates how far I have fallen since my diagnosis almost 2 years ago.

I am sick of being sick, though, and am ready to give this disease the old heave-ho. Your post has given me hope that it is possible.

Congratulations and thank you so much for

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in reply to: TED – treatments? #1183845

Thank you, friends.

Your responses coupled with some of my own research of medical journals and in the Mass Eye and Ear site have answered so many questions. Unfortunately I am more nervous than ever.

Total thyroidectomy?
Eye surgeries?

Two and a half weeks to my appointment. And I guess I don’t expect a lot of actual answers then. Any ideas what I can expect at this appointment?

Freaking out inside.

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in reply to: Methimazole/?Allergy/Treatment Decisions – Confusion! #1182045

Thanks Alexis!

The itching has gotten much better. I took claritin for a few weeks, but have been off for a few days. Still kind of itchy here and there but NOTHING like it was!

Last round of labs showed continued (small) improvement, and my dose was maintained at 15mg once daily. Another set of labs at the end of the month.

Staying the course for now. Someday I will probably have to have RAI, but for now if I can avoid it I’m good with that!

-Jennifer

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in reply to: Just saying hi and glad I found this forum #1182023

Pretty new here too – just got a confirmed dx on 1/9 and started on methimazole on 1/10. Since it seems I may have an allergy to the med I may have to consider RAI sooner than later.

Wishing you the best of luck. Will be anxious to read of your experiences!

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in reply to: Methimazole/?Allergy/Treatment Decisions – Confusion! #1182041

Thanks Ellen.

The ARNP and the doc she consulted with said that if it’s a side effect it will go away in 2-3 weeks ACK! If it’s not a side effect (i.e. doesn’t go away in that time) then they would call it a true allergy and d/c the med, which would hopefully be out of my system in, I think, 36 hours, and hopefully the itching would then subside. She was very careful to reiterate a couple of times that the information is no guarantee – the itching may stop sooner, or (God help me) may go on longer than that. She did not feel it was dependent upon the dose. Though I am having labs again in 4 weeks.

Last week’s lab results:
TSH – remains suppressed
T4 – 15.6 (down from 18.9)
T3 – 230 (down from 403)

I started taking Claritin AND benadryl on Thursday and it does make the itching more manageable for the moment. I told the ARNP that I would like to sit with the information we discussed for the weekend and make a decision based on how well I can tolerate the itching. She sounded okay with that. We did rule out PTU as an option for me, based on that it also has sulfa (like methimazole and bactrim) coupled with the greater risk for liver damage. So if I opt out of this I will move on to RAI or TT.

I guess we’ll see how it goes…

-Jennifer

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in reply to: How long for effect from methimazole #1181928

Thanks friends.

Patience is not my strong point, and this is really challenging me. From the time my initial labs came back on 12/26 and we were pretty sure it was Graves (my Mom has it, too) I have been trying to keep reminding myself that I’m in this for the long haul, and it’s going to be some time before I get back to being me. But it’s soooooooo hard! I know you can all relate. But in November I ran a half marathon, and was running 4-5 times a week — this morning I had to lay on the couch halfway through my kids’ morning routine because I thought I would pass out (why are mornings so much worse anyway??).

Sometimes I think I’m just being a drama queen – I can’t really feel THAT bad, right? But I do! Other times I think – you only feel this bad because you know you have a dx – you didn’t feel this bad until then! But, I only started treatment 5 days ago (12/26 labs were from primary care – dx confirmed 1/10 after endocrinology visit), so I’m sure I was getting sicker in the meantime.

I’m a person who has to be nagged at to take a motrin for a headache. Now I have a cup full of pills to take every morning…

Just having a bad time I guess.

Thanks for your support – I really appreciate it!

-Jennifer

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in reply to: New Dx of Graves, started med today #1181898

Thanks, Kimberly!

Turns out it was just a crazy coincidence and I had a virus. I know about the warnings re: fever/white count but thanks for making sure I have important information!!

-Jennifer

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