[SueAndHerZoo]

#1059914

Hi there.
I was diagnosed with Graves about 6 years ago and after a few years of meds, I went into remission for 2 years. It’s flared again (sometime in January or February) so I went back to the endo. He agreed that my levels were slightly off and put me on 5 mg. of Meth. When we checked my bloodwork a month later he said they were heading in the right direction but not fast enough, so he told me to increase to 7.5 mg. and get blood drawn in 2 weeks. I did that Friday and he just called to tell me to increase to 10 mg.

I’m slightly confused, but didn’t get to speak with him – just his assistant. (He was on vacation but she read him my numbers and he told her to have me up the dosage.) Might this mean that Methimazole doesn’t work for me as well as it used to, or is it that my thryoid is increasingly getting worse at the same rate that I’m raising my meds? Does the thyroid continue to worsen even when you’re on medication?

Any thoughts or ideas?
Sue

[Kimberly]

#1178725

Hello – Hopefully, you will get some responses from those who have come out of remission and opted for another course of anti-thyroid drugs. Just as each patient is unique and responds at different doses of ATDs, my guess is that each episode of recurrence is unique. It will be interesting to hear what kind of feedback you receive, though!

One thing to check would be to get a hard copy of your labs and make sure that you doc is making dosing decisions based on Free T4 and T3, rather than on TSH. (This will also help double-check that nothing got lost in translation over the phone between the doc and the assistant!)

[emmtee]

#1178726

I haven’t been on the board in a while and just saw your post. Since no one else has responded, I’ll give you my 2 cents.

I’m on my first go around with Graves – I’ve never had a remission, and, according to my Endo, likely never will. My endo increased my methimazole dosage twice, but over a longer period of time, and my dosages were larger. I started at 20mg, then increased to 40mg after four weeks and increased again to 60mg six weeks after that. *

You mentioned that your doctor said your bloodwork was headed in the right direction, so I don’t think you have a problem with the drug not working. It’s hard to speculate without knowing the exact numbers, but based on what I went through and how closely your doctor is spacing your labs, I would guess that your doctor is just being very careful to monitor your levels closely while he determines your correct dose. Some people get the right dose the first time out, but for others it takes some trial and error. I asked my endo about it, and she said she usually needs to make one adjustment, but that I was a difficult case.

*BTW – After a period of being hypo, I’m down to 10mg now, and my labs finally seem to be stable and fairly normal. (Still waiting on the TSH to catch up.)

[SueAndHerZoo]

#1178727

Hi Emmtee…. thanks for your response.

Yes, I’m fortunate my endo does keep a close eye on things so I guess I’m just going to “accept” the things I cannot change and see where the journey takes me this time.

It could be worse, right?
Sue

[gerical]

#1178728

Hi to all of you! I am just starting methimazole since having confirmation on uptake scan, antibody levels etc. Ultrasound showed several small nodules endo said “not exciting”. love the terminology sometimes…. Anyway curious to see how I do. Will see her in about a month. Increased my beta blocker to twice daily. I was starting to feel my heartbeat at the top of my head. (What the heck is that all about except frightening!)..

Whats the most upsetting to me I guess is that friends start saying I don’t look like myself. I used to be the one that would burst out laughing and the life of the party. Nowadays I just don’t want to do anything other than try and make it through working.

Hope I get to meet the old me again soon! (sounds corny huh?)

Best to everyone. …….still trying not to let Graves get in the way………

[SueAndHerZoo]

#1178729

Hello, Gerical….. welcome to a place that I’m sure you’d rather not be but I think you’ll find it a comforting and helpful forum.

I know exactly what you mean about wanting your old self back. I feel like my life has been on hold and I don’t know when it’s going to be normal again. There are so many things I want / need to do but I keep waiting till I feel better. So many friends want me to do so many things with them and I keep begging for patience until my levels are consistent. It’s hard for people to understand that you’re not feeling right because you LOOK normal. But inside . . . what a mess.

My biggest and most debilitating symptom this time is the anxiety and all the things I’ve tried to do and all the professionals I’ve talked to about it suggest that we “wait” till we get the thryoid under control. Not sure why it’s being so stubborn this time. My levels aren’t even that bad but the symptoms this time are really kicking my butt.

Hope you feel better soon.
Sue

[Kimberly]

#1178730

For those with friends and family members who just don’t seem to “get it”, this is a really insightful piece called “The Spoon Theory” written by a patient living with Lupus:

(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).

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

How many “spoons” do you have today?

[Author]

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