[Khadijah]

#1059498

OMG!I went to an endo today that was suppose to be my first doctor but it took 2/12 months to get an appointment so I went to another doctor to get on the medicine quickly.

This doctor was amazing he spent an hour with me and the first doctor ten minutes. He explained everything In great detail. However, he is anti-surgery and really wants to do methmizole to try for remission. The other doctor said surgery or RAI my choice. I may have been dead set on not having methmizole or RAI but this doctor was more convincing and took the time to explain why not to do surgery or RAI right away. He also gave me beta blockers.

As you know, I was pretty crazed and stressed from the graves untreated but I am feeling better now that I am on meds so I am not so anxious and can give the methmizole route a try.

I would be very interested in hearing about folks who have been on methmizole and beta blockers for several months plus.

[PolishTym]

#1175143

Best wishes with the new one. My doc is good, but my time with her was shortened after my numbers normalized. She was very pro-RAI and she didn’t think I’d go into remission, and she was right. For two years I was on methimazole before I chose surgery.

[Alyianna]

#1175144

I have been on Methimazole for a few months. The doctor stopped the beta blocker after the last appointment a few weeks ago. Most of my symptoms are much better except the muscle/joint pain… but it seems not everyone gets that.

Polish, may I ask why you chose surgery after 2 years? I am just curious because it seems like you just swapped taking one drug for life for another you would also be taking for life… so I’m not sure why so many people do the surgery or the RAI after some time passes on Methimazole. Does it quit working? Is it harmful to take longterm? I want to be prepared and no one has told me this course of action is temporary, yet seeing other people’s personal experiences it is starting to seem temporary.

[Khadijah]

#1175145

PolishTym- thanks. Yes, I fear that mine will not go in remission but because I am feeling better I am not complaining at the moment. What made you decide to do surgery? Did the meds not work anymore, toxicity, felt bad too buch back and forth with readings? Thanks for your insight!

Alyianna-I feel like since I’m feeling better with the methmizole I don’t need the beta blockers? Does it help with the brain fog. I have bad muscle atrophy for lack of a better description, the doctor said I can exercise while on the beta blockers. Not sure what the bb is for? I don’t have palpitations or high blood pressure anymore. Thanks!

I feel like a crazed junkie looking for the best fix!

[Kimberly]

#1175146

Khadijah wrote:

I would be very interested in hearing about folks who have been on methmizole and beta blockers for several months plus.

Hello – I have never been on beta blockers, but I have been taking methimazole for 5+ years. Many docs will push for RAI/Surgery after 18-24 months on methimazole, but my doc is OK as long as my hyperthyroidism is controlled with a low dose, and as long as I don’t have any negative side effects.

Most of the doctors who are opposed to long-term use of methimazole believe that side effects can occur at any time, even though this is much more likely in the first 60-90 days of treatment.

Of course, ALL three treatment options have risks, so it’s important to consult with your doc, research from credible sources, and make the decision that is right for you.

This thread goes into some additional detail on long-term use of anti-thyroid drugs:

(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://gdatf.org/forum/topic/42509/?page=1

[SueinBC]

#1175147

I have been on methimazole for a year and a half now. For the first three months after I was diagnosed, I was also using propranolol. I stopped using that when my thyroid levels got into the normal range and I was no longer experiencing heart palpitations, shaking, etc..

Happily, I have not experienced any bad side effects from the methimazole. My doctor has been regularly lowering dosage of my methimazole – it seems that after about 3 – 6 months at one dosage, I start to get a bit hypothyroid, so the doctor lowers my dose of methimazole. I started out with 15 mg of methimazole/day and I am now down to 2.5 mg/day. For now I am quite happy using this drug, and I am not considering RAI or surgery at this time.
Sue

[Khadijah]

#1175148

Kimberly- thanks for the link, very interesting. I am on a high dose 30mg daily. so, that is why I’m afraid of a reaction.

As Sue mentioned with all the adjustments to the medication, I don’t want to be experiencing weeks of feeling bad because I need to adjust my medication frequently, as well as wait for it to kick in.

I am looking for a job and if I start a new job I will need my brain to be as sharp as possible I do a lot of data analysis, which can be hard enough when I’m feeling good.

Also, for the dancing I need to be steadily healthy, are the adjustments just at the beginning and eventually one stays on a stable dose. I mean if one is on it for a long time you are satisfied with the results? I would imagine if every couple of months you go really hyper or hypo that would be rather unpleasant?

[PolishTym]

#1175149

I went with surgery, since you wondered, because I felt the meds’ positive aspects had maxed out. My endo told me it is easier to regulate hypo than hyper. Being hyper was full of hills and valleys for me, so I wanted to at least feel some kind of level. A shaking spell with massive chills pushed me into a decision.

I went with surgery for several reasons. One is the thought of a radioactive pill freaked me out a bit. And not being able to hug my kids after just confirmed my freak-out. The other was the research I could find couldn’t convince me to go with RAI. I had access to medical journals from a variety of countries, and I couldn’t find a significant negative (at least for me). I understand the alternatives are great for others, but surgery worked for me. Of course, I had access to a prominent surgeon. I would not have gone with someone not at a high skill level.

I’m not up to the pre-Graves’ years, but I do feel pretty consistent.

[amosmcd]

#1175150

I’ve been on Methimazole for 2-1/2 months. Started at 10mg and then dropped last month to 5 mg. Im seriously thinking of surgery (don’t want RAI) soon, because I’ve felt so sedated and tired since starting it. My reaction seems unusual. It’s helped with my hyper symptoms (which were mild). I don’t think I’d ever make it to remission on ATDs and since I have Hashimoto’s as well, that skews the picture. So that’s my odd story.
Amy

[SueinBC]

#1175151

Khadijah wrote:

I don’t want to be experiencing weeks of feeling bad because I need to adjust my medication frequently, as well as wait for it to kick in.

Khadijah,
I haven’t had long stretches of feeling bad when my dosage of methimazole is adjusted. Each time the doctor has lowered the dose, I have had a few days of feeling “hyper” – main symptoms for me are that is my heart gets racey, and I feel cranky and on edge. Within a week, I seem to adjust to the new dosage. So far, my doctor has lowered the dosage before I have strayed very far into hypo territory, so I haven’t had a long stretch of feeling bad before my meds have been adjusted.

Myself, I’m staying optimistic about the possibility of going into remission on ATDs, and if I don’t, I could stay content with things as they are.

[Kimberly]

#1175152

Khadijah wrote:

Also, for the dancing I need to be steadily healthy, are the adjustments just at the beginning and eventually one stays on a stable dose. I mean if one is on it for a long time you are satisfied with the results? I would imagine if every couple of months you go really hyper or hypo that would be rather unpleasant?

Hello – I think every patient has a little different experience, so it’s hard to generalize. The idea, though, is to check your labs frequently enough and make dosage adjustments as needed so that you don’t have extreme hypo or hyper swings.

During stable periods, I’ve been able to go 4-5 months in between labs. (Of course, it’s a good idea to call the doc’s office and get in sooner if you notice a significant change in symptoms). Lately, my doc has had to make quite a few small adjustments to get my labs closer to mid-range, so I’ve been going in every two months.

I don’t know if I would use the word “satisfied”. Obviously, needing several endo visits each year isn’t ideal! However, right now, I’m *comfortable* enough with my current routine and with the risk/benefit profile of taking anti-thyroid drugs that I’m not ready to pursue a more permanent option.

Hope this helps!

[Khadijah]

#1175153

I’ll give it a try for now because I’m not working and if I feel bad I can rest during the day, but, having to go to the doctor every couple of months or even ever four would make me nits, not to mention the blood work ever couple of months. Ugh, this is exactly what I was afraid of. I have a five year old so keeping up with him when I’m sick is really hard.

But, thanks for everyone’s perspective, this is an amazing resource!

[Robboford]

#1175154

Hi Khadijah,
Just wanted to chime in with my thoughts. I have been on my Graves’ journey in excess of 14 months now. I have also got heart complications and have been diagnosed with TED (also diagnosed with pretibial myxedema in addition to TED). Surgery seems to be the preferred option here in Australia, although RAI Treatment is also performed. I have chosen the surgery option because hopefully it will stop the TED progressing, from all my research there is more of a chance of the TED progressing with RAI than there is with Surgery. Luckily I have been referred to a leading Head and Neck Surgeon who I see this coming Thursday and although my levels are still not stable for surgery, the Goitre is growing (3cm approx in the last 3 months) and the TED is getting worse, hopefully he will accept the higher risk now involved with operating on me. (My Endo also picked up a lot more vascularity (Spelling???) and a bruit in my Thyroid). Everyone’s choices or reasons are different though, so my best advice is to research as much as you can and make an informed decision in conjunction with your medical team. Good luck on your journey, some days are good, some not so good but always I have found reassurance and support from fellow Forum Members.
Cheers
Debbie

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