[Gabe]

#1178276

Hi Flora. Forgot to add…keep a journal (doesn’t have to be anything fancy) of how you feel daily. Many of us go thru multiple adjustments to Meth/beta blockers before we feel any better AND sometimes if the meds over-correct you can go hypO, which is its own set of fun symptoms. That’s the roller coaster many refer to. Hopefully your ‘ride’ is short and the ideal dose is found quickly.
If not, like some of us, you still have other options. It’s a very frustrating disease and as hard as it is for you to deal with what’s happening to you, it’s just as hard for your family to truly understand. Many of us are blessed with a great support network, but we can stress out even the most caring people with our ups and downs.
Best wishes, karen

[beach45]

#1178277

Just to share my experience if possibly it can help: I was on Methimazole 2 years; I had an excel spreadsheet which I updated wtih every dosage change. I shared the updates with my endocrinologist who appreciated it. I did not feel full effects with medication changes until maybe 6 weeks after changing; I did not have significant improvement in levels until I went from 10 mg to 20 mg; everyone is different though. Unfortunately I did not go into remission and decided on RAI May 2012.

I had all kinds of joint pain, muscle aches, fatigue, mood swings, the whole nine yards and it was probably due to levels changing, my FT3 was at times going too low for me, and possibly some effects of the ATD medication. I had some moments of normal. Patients use a beta blocker for the rapid heart rate until the antithyroid medication gets the levels where they should be. Although I have a friend here who had RAI 7 years ago and is still on a low dose beta blocker. I don’t think that is the norm though. Yet the last year with small dosage changes up and down I was feeling like I was too up and down, hyper to hypo to hyper again and never balanced, numbers all over the place, so I opted with a strong suggestion by my endocrinologist to take the I-131/RAI; TT was an option yet I voted against it even with my moderate TED. I am happy I did this as a year later I can see that in time when the doctor gets my thyroid hormone and dosage correct I will feel more like I did back 3 years ago when this all started! For right now, months after RAI my eyes improved believe it or not. In fact I was told I don’t need glasses which is strange because I’ve worn them for distance for years. We are all so different with our experiences in this journey yet then there are similiarities.

It can be scary along this journey and there is fear of the unknown yet I found working with a good doctor, sharing on forums like here and just taking it one day at a time knowing that if Plan A did not work then I’d go to Plan B, which I did due to not going into remission; yet many have gone into remisson on ATDs or stablize on a lower dosage. It takes time and a lot of patience what I found!

Glad to hear you are doing better and it does get better as like for me things look completely different now than they did in the beginning of my journey three years ago!

Best of luck!

beach

[flora]

#1178278

Thanks so much, Friends. It’s good to know so many helpful people are on this journey, too.
Flora

[Momof5]

#1178279

I’m in the opposite boat….My initial dose worked so well, it sent me hypo…reduced my meds to half the starting dose and now after a week, I feel like I am all over the map….and it’s driving me crazy. I’m cold, exhausted, heart palps, but good pulse, and bp has increased a little again after being normal range for the past three weeks. Argh…

I’m contemplating trying to get labs tomorrow even though it’s only been a week on the dose decrease, but I’m switching endos and can’t ask the old and won’t see the new until the 22nd.

[flora]

#1178280

Oh, Fooey! Sorry to hear of your frustrations – do you think maybe Laurel’s and Kimberly’s posts to me (on April 10th of this conversation) might apply to you, too? I felt pretty awful that day with the dosage change …. I hope you feel better again soon!
Flora

[Kimberly]

#1178281

@Carrie – Hopefully, you will feel things start to settle down in a couple of days, but if not, could your primary care doc order a set of labs for you in order to get you through this transition phase?

Take care!

[Momof5]

#1178282

Yes, I could probably get her to run labs, but I don’t wanna be one of those patients.
If I can wait til Monday, I can probably wait til Thursday when I am supposed to run them again. It’s only been a week, and I highly doubt I am hyper again as pulse is normal, bp is good, just a bit higher than optimal (both numbers are elevated, not just systolic).

I have read others stories of transient symptoms and needing time to adjust….I guess I didnt believe I would be one of them.

[Momof5]

#1178283

Flora! That is what I am hoping and kind of took it as a sign that your post got bumped to the top today.

[Momof5]

#1178284

I guess it was transient or being somewhat hypo because I got blood tests run on Saturday by my GP and they have barely moved at all. Whew!

Still have heart palps and bp is still slightly elevated, but will deal with that next week.

[debhobson13]

#1178285

I Have the same thing your talking about, I found it was to much shocking I cut a 5 MG in half rather then taking 5 MG I took 2.5 MG it was like a miricle The DR bump mine up to 10MG. Between the proper the two medications I take after four years of being so sick from this. I now feel like a new women, I take 5MG bystolic once a day, Norvasc 10MG once a day, 2.5 MG of metgimazole twice a day. it stop the shakes the face heart race, lower my BP and gve me my life back. My muscles still hurt but not like it did.

[flora]

#1178286

Hi Everyone,
Just back from seeing my doctor, who gave me the happy news that the blood labs I had done last week shows both TSH and T4 in the normal ranges. I have been feeling so much better these last several weeks, that I was hopeful for a good report today. We’re staying with 3x5mg of Tapazole daily for now, checking levels next month. And again, my thanks to everyone here whose experience, commiseration – and humour(!) – helped me get this far on my journey. All the very best,
Flora

[Boomer]

#1178287

Alright Flora!

Thanks for sharing your good news! When I read about you (or anyone for that matter) feeling better it makes me feel better too! Didn’t know this stuff was catchy did ya? Me neither

I’m sure you’re jumping for joy because you’re feeling so much better but try not to overdo it and get run-down okay? Stay mindful of your meds, eat good healthy food, stay hydrated, and keep on doing whatever you’ve been doing ‘cuz you must be doing it right!

Continued good heath to you,

Boomer

[Kimberly]

#1178288

Great news that your levels are in the “normal” range! Keep in mind that if you start experiencing symptoms of hypO prior to your next appointment, definitely call the doctor’s office to get a set of labs done more quickly.

Every patient is different, but symptoms of hypo can include fatigue, joint pain, unexplained weight gain, constipation, dry skin, cold intolerance, and slow pulse.

Take care!

[Author]

Posts