[amsamick]

#1059808

Hi! Seven years ago I was diagnosed with Graves’ and at
the time i thought no big deal, it’s not that serious
and rolled on. Little did I know then…..I would be
dealing with this on a daily basis. I have been on and
off of methimazole for 2 years and I’ve taken
Propranolol for 2 years. The labs I had done two weeks
ago showed a tsh of 0.054? Is that really high? I have
noticed lately my anxiety has been through the roof and I have zero energy with a heart rate of 115ish. I feel
like a crazy woman! Just ready to start feeling
somewhat NORMAL again. I am not a “depressed” person
and love being on the go but lately I’ve been in a
fog/funk. My endo increased my propranolol 10mg to
4-5xday as needed and put me back on the methimazole
5mg 1xday. He really wants me to do the RAI treatment
and gives me 6 weeks to decide? I know the methimazole
is not good for your body and can only be taken for 5
years. I’m scared if I do the RAI i will go hypo feel
terrible and gain weight. I have no idea what the best
treatment option will be? Can any of you tell me how
you now feel after doing RAI treatment? I can not keep
going on like this. Any feedback will be greatly
appreciated.

[Kimberly]

#1177755

Hello and welcome! We are fellow patients here, not docs, but here are a few thoughts…

1. It’s helpful to get hard copies of your labs so you can see for yourself where your levels are compared to the “normal” range. 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. The amount of TSH produced generally depends on a “feedback loop” according to where our thyroid hormone levels (T3 and T4) are. When T3/T4 are too high (hypER) the pituitary shuts down production of TSH so that the thyroid won’t produce any *extra* hormone. When T3/T4 are too low (hypO) the pituitary cranks out TSH to get the thyroid to produce MORE thyroid hormone. For Graves’ patients, the T3/T4 are particularly important in making dosing decisions; TSH can remain suppressed for quite a while and is not a reliable benchmark early in the process.

2. Hopefully, others will chime in with their personal experiences, but this board has a search function (in the top right-hand corner of the screen), so you can run a search for “RAI”, “Radioiodine”, “thyroidectomy”, “surgery”, etc. to read older stories. There is also a lot of great info in the “Treatment Options” thread in the announcements section of the forum.

3. I’m not familiar with a 5-year limit on Methimazole. The latest medical guidance (which you can find in the “Treatment Options” thread) generally recommends a 12-18 month course, *but* leaves the door open for longer-term use for patients who prefer that approach.

Take care – hope this helps!

[amsamick]

#1177756

Thank you Kimberly for your feedback and useful information. I’m so glad to have a place to vent and read others going through the same thing. I have found its hard for others to understand who do not suffer from graves’ I will defantlly refer to the info available on this site. Thanks again:)

[SueAndHerZoo]

#1177757

Hi there, and welcome.
We have a lot of similarities: I was diagnosed 6 years ago also and, like you, thought it was no big deal. You pop a pill, have blood drawn once in a while, and pretty much forget about it. I was fortunate to go into remssion after a few years and that lasted almost two years but it ended sometime around January or February. I’m back on Methimazole (as of 3 weeks ago) and have a prescription for Propranalol and tranquilizers which get me through the really bad days. I’m seriously considering TT because this time the anxiety is really bad and it’s robbing me of a normal life. I won’t make a final decision, though, while I’m feeling like this. I want to become stable and then make a decision with a clearer head.

Geez, it must be something in the air …. why are we having such a bad time with anxiety right now even though it doesn’t seem like our levels are nearly as bad as some people …. if we’re both on 5 mg. a day our levels can’t be that bad (although the doc called yesterday and said I can go up to 7.5 if I don’t feel better in a few days.)

I have no answers but wanted you to know I can relate to what you’re going through and that you’re not alone in this battle.
Sue

[smtucker]

#1177758

Wish I had something useful to add to the conversation, but my Grave’s adventure has been different. You will find that this forum is full of support and information which might help you navigate your own choices.

*susan*

[amsamick]

#1177759

Sue,
I often wonder if I will ever feel normal again. I have a 7 year old and most days I feel so guilty for not having the energy to give her my 100%. I can’t tolerate the heat, walking to and from the car gets my heart rate up and the anxiety is awful. It has really taken a toll on my everyday life since November. I do take Valium as needed and it does take the edge off for the most part. I am seriously thinking of doing the RAI treAtment but do agree with you on waiting until I can think clearly before making a permant decision. As you can probably tell I’m a complete mess right now. I know in time it will get better:) thank you so much for the feedback. So thankful I found this site.

[adenure]

#1177760

I understand the guilt of not being able to care for your children bc you are sick with Graves. I had a good 2 months of basically being completely unable to care for my children. Fortunately, my mother- in- law, my husband, and my dad helped me during that time. It was scary and so defeating to feel like the ONE thing that I feel I was meant to do and am here for (to be a mom to my children), I could not do. My anxiety was terrible. My heart rate was 120 walking down the hall, I never slept- well, you know how it is…

I did not have RAI. I did have surgery though- 8 months ago- and I tell you that I am 95% or so my normal self again. No more crazy heart rate, anxiety, insomnia, etc… I can take care of my boys again. I can homeschool them, take them to the park, even play a little bit of tag here and there. I enjoy life again. I’m not anxious and scared anymore. Surgery gave me my health back and for that I am grateful. I know surgery isn’t for everyone, and RAI (from what I understand) gives people their health back too. I didn’t choose RAI for a bunch of reasons- 2 of which were I didn’t want to be away from my family and I wanted to continue breastfeeding my baby (now toddler). It sounds like maybe you’re considering a definitive treatment since the ATD’s aren’t giving you 100% relief.

Take time to research and consider your choices and then go with your gut (as long as your doctor approves your choice and feels that you’re medically safe for whatever you choose.) You will be able to be there, healthy, well, and without anxiety again for your little one. Hyperthyroidism makes us not well, but it is not who we are.

[amsamick]

#1177761

Thank you for sharing your experience with me. Nothing is more frustrating than not being able run, play, work in yard, etc because of the horrific symptoms. I’m so glad you are feeling better and that gives me hope!

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