Hold control (command on a Mac) and press the + key as many times as necessary to increase the font size.
Hold control (command on a Mac) and press the - key to reduce the font size. - hide

#1 March 17, 2010 16:52:52

kathyz
Registered: 2010-03-17
Posts: 3
Profile  

newby and questions about methimazole

hello all,

i've also been newly diagnosed with gd. i tried unsuccessfully to work with a naturopath, and have seen my FT4 jump 1.1 points since since September (i'm at 7.5 now). when i was diagnosed, i didn't understand the disease and wasn't having symptoms. now i do: i've lost some weight (not too much) and have brittle nails -- minor in comparison to others!

like some of the members of this forum, i hope to avoid RAI or surgery. i'm thinking of going on anti-thyroid medication and working on getting my body back in shape so that when i get off the meds, i'll stay in remission. i'm scared and don't know what to expect! my doc, bless her heart, got annoyed with me for choosing to go the naturopathic route, and i no longer feel comfortable talking to her.

can you tell me: what will happen when i start taking methimazole? might i become excessively hypo? is it possible that i'll be inflicted with mood swings and depression? what about diet? is there something i should avoid? if the methimazole blocks thyroid production, where will my thyroxine come from? once i start taking the meds, will i have to play with the levels?

also, can those who have done what i hope to do chime in with their experiences?

what i want to do is love myself back to health: lots of laughter, good friends, gratitude. i believe in my power to heal! has anyone had success with this approach?

i wish you all good health!

kathy

Offline

#2 March 17, 2010 17:20:13

mamabear
Registered: 2008-10-14
Posts: 495
Profile  

newby and questions about methimazole

I am confused, are you trying a "natural" approach? I am known for being blunt so I will continue that route and say that I have never heard of a "natural" approach when it comes to something as serious as Graves' disease. It is not a toy to be played with and Graves' doesn't care who you are it is not predujuce nor does it take favorites. (unfortuneatly lol).

In order to help it there are meds out there like you have heard (the meth and another called PTU(that is just the shortened name for it). Those are drugs that would be help you along with any other drug your dr. thinks might help in regards to your pulse rate or other issues that might happen while your thyroid is out of whack.

There are always sided effects to anything we put into our body "natural" or not we still get side effects and the benifits most of the time out weight the side effects so we have to trust to take them and pray and hope for the best. If that doesn't work then we can try another drug and see if that works. Having a great attitude like you said "loving your way to health" is AWESOME to feel! You are on the right track and that and a good support system will get you very far!

I wrote down all of my symptoms before taking PTU. I was trying to get pregnant so went with the PTU not the Tapazole(meth). I then found all of the side effects that the PTU would or could give and wrote those down. As I had a side effect that was not my usual one I wrote it down or checked it off and when I was on the meds for a while I was able to check off some of the symptoms that I had prior to the PTU. I made it a joke and laughed in Graves' disease's face!!! I see you are on that path and think that is a great idea.

The best person to talk to about sided effects would be the pharmacy. Give them the name of the drug and the dose or just the name and they will be able to give you the most updated information.

good luck


[color=#BF0040:3fuh0c9u][b:3fuh0c9u]Almost 4 years in remission with no med's! 4 kids, 2 dogs, 1 bird and a Husband who understands about being a wife/mother and woman with Graves Disease - Couldn't ask for more! This forum ROCKS![/b:3fuh0c9u][/color:3fuh0c9u]

Offline

#3 March 17, 2010 19:51:12

enough3
Registered: 2009-03-05
Posts: 144
Profile  

newby and questions about methimazole

There is no natural method for healing of Graves. A positive attitude and good spirit WILL help you tremendously, though. If you keep that up, healing can come faster

If you find healing through the process your going through (natural), then you may never have actually had Graves. It you have a true DX of Graves, then you have only a couple choices of care (which do not include what would be natural). You will not succeed with the natural approach with Graves. In fact you can put yourself in SERIOUS danger if you continue the path you have been on.

I know b/c I went through a stage with Graves where I truly was in denial about it. I, too, thought I could conquer it with the natural method. So, much that I had a SECOND thyroid storm b/c I REFUSED to take ADT's. I even went to a natural Doc...and he did blood tests that never related to Graves. Waste of money;( I thought that I could fix the issue with good food, lots of sleep, positive thoughts...I never really understood graves until I did tons and tons of research.
Really take the time to understand what your dealing with. For me, going through a thyroid storm was the most horrible time of my life. If you really have Graves, and you continue the natural method...you may end up with a thyroid storm. And I promise you that you will regret so much not taking the advice of a understanding Endo who will give you some options of care. Had I listened to my Endo the first time, I would NEVER have had a thyroid storm the second time. My lack of understanding put my life at risk. I had no clue the Graves was as serious as it is and that it needs immediate care.

I was told IMMEDIATELY by my Endo to have my thyroid ablated. That totally freaked me out....the only other option of choices for me was trying for a remission on ADT's. That was the most natural method for me at the time. I tried for 2 years and could not achieve remission. My goiter grew so large that it came out from my neck. I then choose RAI....and I'm on replacement now.


Looking back...I had very similar desires like you.
I continue a very healthy lifestyle: positive, eating good, exercise, etc. etc. I do take my replacement hormone every morning. I feel great and I'm so happy that I can now focus my energy on things I more interested in...lol



Be careful with the path your on....it could cause serious problems. Hope you find the care that you need.

Offline

#4 March 18, 2010 07:41:00

Bobbi
Online Facilitator
From: Miami, FL and Zephyr Cove, NV
Registered: 2008-10-27
Posts: 1325
Profile  

newby and questions about methimazole

You asked questions about methimazole. Basically, it acts as a chemical block to the production of thyroid hormone. If you take too much of it, yes, you could become hypothyroid. If you take too little of it, you could remain hyperthyroid. So your blood has to be analyzed periodically and adjustments will occur to your dose. You, personally, should not "play" with your levels, if you wish to get well in the quickest possible time. Your doctor will look at blood test results and give you instructions for how much to take. If you play with the dose, between blood tests, your doctor will have no way to know what an appropriate dose would be. It could put you on a hormonal roller coaster if you do not take the meds as instructed. Having to work with the doctor can be frustrating at times -- especially when we "feel" that things are off -- but it is the best way to quarantee progress instead of setbacks. And, sometimes, what we "feel" about where we are in the scheme of things does not jibe with the reality. For example, some folks are diagnosed before they see the damage hyperthyroidism can do, before they have been made horridly ill by the disease. Those folks may "feel" just fine hyperthyroid. So adjusting their levels down may require them to get used to feeling normal with slightly different "settings." But being even a little hyperthyroid causes us to lose muscle over time, and to lose bone over time. And it damages the heart little by little. So it is really in your best interests to take the medications as prescribed, and get your body back to normal levels of hormone to halt the damage.

As for diet, what your body really needs right now is good, balanced nutrition. There are websites that will tell you to avoid certain nutritious foods because they contain "goitrogens" -- i.e. they have a chemical in them that can increase the size of the thyroid if taken in too large a quantity. The reality is that it is not humanly possible to eat enough of these foods to make a difference. If there is one "food" item that should be completely avoided --- as if it were poison -- it is kelp. Kelp has a huge quantity of iodine in it which can interfere in the thyroid's hormone production in UNPREDICTABLE ways. It might slow down the production of hormone sometimes, but it also might provide fuel for the flame in others. There are times -- typically if we are being given a thyroid uptake and scan test, or if we are approaching treatment RAI -- we will be told to avoid seafood in general. But under normal circumstances, there are no major foods we need to avoid as a general rule. (Other than kelp. -- and if you have removed your thyroid, even that prohibition goes away, I think.)


[b:3sz1pkbe][color=#008000:3sz1pkbe]Bobbi GDF Online Facilitator[/color:3sz1pkbe][/b:3sz1pkbe]

Offline

#5 March 18, 2010 12:39:40

Kimberly
Online Facilitator
From: Phoenix, AZ
Registered: 2008-10-14
Posts: 3385
Profile  

newby and questions about methimazole

kathyz wrote: can you tell me: what will happen when i start taking methimazole? might i become excessively hypo? is it possible that i'll be inflicted with mood swings and depression? what about diet? is there something i should avoid? if the methimazole blocks thyroid production, where will my thyroxine come from? once i start taking the meds, will i have to play with the levels? kathy


Hi Kathy - I have been taking methimazole for 2 1/2 years. The trick with the meds is to find the "sweet spot" where your dose of meds is blocking just enough production to keep you out of hypER territory, but not so much that it sends you hypO. As Bobbi said, this does require a period of trial and error. Some people respond FAST to the meds, and others take longer to respond. You can help yourself by watching for hypO symptoms once you start taking the meds. Common hypO symptoms are fatigue, intolerance to cold, constipation, heavy menstrual periods, slow pulse, dry skin, and joint pain. If you start feeling these symptoms in between scheduled appointments, don't be afraid to call your doc's office and ask for an earlier appointment and a new set of labs.

You will read various stories online from people who claimed to cure their Graves' with a "natural" approach. But some cases of Graves' Disease will go into remission on their own...so there is no way to tell if these natural approaches "worked" -- or whether that person would have gone into remission anyway. Still, anything that you can do to nurture your body, mind, and spirit will help you on the path to healing.

Best of luck!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

Offline

#6 March 18, 2010 13:17:06

kathyz
Registered: 2010-03-17
Posts: 3
Profile  

newby and questions about methimazole

Hello everyone,

Thanks for your hearty replies. I was diagnosed before I had symptoms, so yes...I didn't take it as seriously as I should. I have the prescription for the Meth, and I'm going to take it. I tried to go the natural route, but as you all have stated, it didn't work. My plan is to take the meth, get my body in optimal shape and then hope that when I get off, I'll stay in remission.

In the meantime, I'm going to approach this disease as a gift. It has come to me for a reason, and I think it might have to do with how much pressure I put on myself. As a PhD student, it's hard to avoid stress. But I *can* learn how to manage the stress better, and I plan to.

I have a question for Kimberly...how is it that you're on methamizole for 2.5 years? I've been reading that one shouldn't stay on it for longer than 2 years. What happens if you do?

Thanks everyone! I'm blessed to have found you guys!

Best,
Kathy

Offline

#7 March 18, 2010 14:12:22

Ski
Online Facilitator
From: San Francisco Bay Area
Registered: 2008-10-17
Posts: 1569
Profile  

newby and questions about methimazole

The recommendation is typically to take methimazole for up to two years and then attempt remission, but at our last conference we were told that there is no reason a person cannot stay on it, at very low doses, to maintain normal thyroid hormone levels long term, if remission does not come after the first attempt. By the way, a true remission is defined as a period longer than one year where your thyroid hormone levels remain normal with no intervention (no ATD, and no replacement hormone). Keeping your body healthy may or may not help your body achieve or maintain remission, but of course it's always a good idea!

As you go through the process of bringing your body to its ultimate healthy state, keep an extra eye on your stress levels and reactions to stress. The antibodies that bring on the hyperthyroid state are inside the immune system, which is stimulated when we have severe stress reactions, so being very "Zen" may help a lot more than keeping your diet organic, if you see what I mean. Every little bit helps, I'm not saying that ~ just pointing out that keeping our immune system "quiet" is one of the best ways to try and keep antibody action down. One last thing ~ taking supplements to "boost" your immune system are NOT what you want, same reason. Boosting the immune system = stimulating the damaging antibodies.

There are some issues with taking methimazole long term (for example, being a chemical medication, it is processed through the liver, which builds up "junk" over time and as we age, we cannot tolerate as much "junk"), but if your dose is extremely small, of course that risk is minimized.

The "big" side effect dangers of methimazole typically arise early in the process of taking it (in the first couple of months), so if it hasn't happened after two years, it's unlikely to begin at that point or beyond that point. ONE more point on that ~ if you stop to attempt remission and restart, the risk of those bigger side effects (liver failure, lowered white blood cell count) are *the same* as if you just began the medication. In other words, one successful round of treatment does not guarantee you will not experience those rare, serious side effects in a second round, so be VERY vigilant if that is what you do. It's also a good argument for staying on the meds, rather than going off them frequently to see about remission. Get yourself to a good spot, where your levels are stable and you feel good ~ oh, and we've also heard that having very low antibody levels can support a remission, so get those levels tested prior to attempting remission. They fluctuate for reasons no one truly understands right now, so you can't "guess" where they are by how you feel. Testing is the only way to know.


~Ski
GDATF Online Facilitator

Offline

#8 March 18, 2010 23:53:51

Kimberly
Online Facilitator
From: Phoenix, AZ
Registered: 2008-10-14
Posts: 3385
Profile  

newby and questions about methimazole

kathyz wrote:I have a question for Kimberly...how is it that you're on methamizole for 2.5 years? I've been reading that one shouldn't stay on it for longer than 2 years. What happens if you do?


Hi Kathy - Some docs do have a hard and fast rule about withdrawing Anti-Thyroid Drugs after 2 years. However, at our most recent conference, one of the endocrinologists who presented stated that he would support a patient in longer term use of ATDs *if* they were able to maintain stable levels on a low dose and *if* they remained free of side effects such as liver and WBC complications.

At this point, my doctor has not pushed for a "permanent" solution...and I'm not in a hurry for one, either. I get a CBC and CMP done with every office visit to check for liver and WBC issues. I've had a couple of hyper "blips" (both stress-induced, by the way), but these were fixed with minor dosage adjustments. I'm currently on 5 mg/day. I feel good now, so my preference would be to not upset the apple cart and have to go through the stabilization period required to find the correct dose of replacement hormone after RAI or a Thyroidectomy. Of course, if I have side effects...or if I get to a point where my hyperthyroidism can't be controlled by the meds...then I will have a decision to make. But for now, I figure the devil I know is better than the devil I don't. :D


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

Offline

#9 March 21, 2010 15:42:22

ShopGrl
Registered: 2010-03-21
Posts: 1
Profile  

newby and questions about methimazole

Hi, I am so glad I found this forum. Your post caught my attention because I have been taking Methimazole for about 6 1/2 months. I was diagnosed with Grave's Disease in March 2009; however based on the symptoms I think whatever triggered it happened about a year before. I was deployed to Kuwait and after I came back I was having major hot flashes and mood swings...I thought I was all post deployment related stuff. I was training for a half marathon and suddenly I started having really high heart rate but at the time I was taking Hydroxycut to lose weight so I thought that was causing the high heart rate. Gosh, thinking about it, the results could have been fatal. Anyhow, three months later and out of nowhere I got a goiter and I was out of breath. So I went to the doc and he diagnosed me with GD and prescribed Methimazole. I am now taking 50mg twice a day because my levels are still high. As far as side effects I really have not had any. Actually, Methimazole has been a life saver for me. When for whatever reason I don't take it I immediately notice it because my heart rate goes nuts and I get very irritable. By the way I am also taking high blood pressure medicine for my heart rate, however, getting off that slowly because I have noticed that with the increased Methimazole dose, my heart rate is getting back to normal. This was important for me because I wanted to get back to running since this past year it has been brutal in that regards; it has been a year of trying to find the right dose for me, since the doctor really did not recommend the RAI for me because it would cause my eyes to bulge out. Luckily, I have a lot of confidence in my endocrinologist and truly value his opinion. Which brings me to my last point. If you are not comfortable with your endrocrinologist, I would find another one because you really do have to feel comfortable with that person. ;)

Offline

#10 March 21, 2010 19:12:05

kathyz
Registered: 2010-03-17
Posts: 3
Profile  

newby and questions about methimazole

Thanks all!

Ski -- On the advice of my naturopath, I've been taking a supplement called Moducare by Thorne Research. Here's how it's described:

"People with allergy and asthma symptoms, as well as numerous other immune-related health challenges, often demonstrate an imbalance T-helper cell response, with an overabundance of TH2 activity and reduced TH1 activity. The proprietary blend of plant sterols and sterolins in Moducare has been shown to act as an immune adaptogen, helping support a normal, balanced Th1/Th2 response."

Are you suggesting I get off the Moducare? I'm getting frustrated because of the conflicting information I'm getting. (I'm also zen about my frustration ;) )

It's good to hear that an endocrinologist suggested that staying on the methimazole might be okay for some. I'll make sure to get my liver and WBC tested, too. Right now I'm on 10 mg of the stuff 2x a day, but I just started and I've got an appt with my endo in two months. Do you guys know the presenting endocrinologist's name? I'd love to look him/her up.

All my best!!

kathy

Offline

  • Root
  • » GDATF
  • » newby and questions about methimazole [RSS Feed]

Board footer

Moderator control

Questions? Problems? Please contact us at info@ngdf.org or 877-643-3123.

GDATF on Facebook

Support the GDATF and become a member today!

© 2014 Graves' Disease & Thyroid Foundation