Graves' Disease Support Group

Welcome!!

Sorry for the reason you're here but glad you found us. We bring a wealth of experience and knowledge to the table - hopefully you will find some benefit to it.

We have many newcomers here and, if you are so inclined, I think you might find two of my recent threads pretty helpful.

Scroll down to "First step after diagnosis"....in there, I explain how important it is to find a doctor that will medicate you properly.

It has been our experience that way too many docs can't accomplish this and the patients are left to suffer.

In fact, it is vital for you to find a doctor that will medicate you properly before getting a permanent treatment.

Think about it, if a doc can't dose you properly now and keep you feeling well, how do you think that doctor will dose you after a permanent treatment choice?

Now, if you go back a page or so, look for "What are my choices" posted 10/29/09.....my reply (#4) explains all the treatment options with links to medical journals.....I provided additional information in subsequent posts. Hopefully, you will find this information useful.

My personal story: I was diagnosed with hyperthyroidism during my annual physical in June 2007. In between getting a thyroid ultrasound and meeting with endo #1, I embarqued on an extensive research mission.

I joined a Graves' forum (didn't find this one until much later) and the very knowledgable people on there, shared SO much information with me and steered me in the right direction for superior research information.

I learned enough to decide I wanted to try ATD's (anti-thyroid drugs such as Tapazole or it's generic, methimazole or PTU).

Graves' disease is for life so I figured.... if I most likely will need to take meds for the rest of my life, why not take ATD's and save myself an invasive procedure. If I went into remission on ATD's, all the better.

I have had my ups and downs during treatment only because the first two endos that treated me were "old-school"....they both pushed RAI without fully explaining the other treatment options and they both overmedicated me, leaving me with significant hyPO symptoms.

I finally became proactive with my care and used the extensive research knowledge I'd gleaned to get dosed in the manner which I knew was right for me.

Endo #2 went out-of-network recently - I met with endo #3 a few weeks ago. Turns out, she adheres to out-dated practice methods as well (sigh) but, once again, using the knowledge I've gleaned enabled me to get her to agree with my dosing plan.

Since I am tired of fighting with endos, I've taken the suggestion many forum peeps have made and am meeting with an internist today.....many forum peeps have said that GP's, internists, naturapaths or osteopaths often look at the whole body and are more receptive to working with the patient....only time will tell.

I know it is possible to feel and live well while having Graves' disease.....it happened to me.

However, it will take understanding and knowledge about your disease and being proactive with your care.

We have lots of information to share with you and can help you interpret your lab results and make dosing decisions you can address with your doctor.

If you'd like, please post your last several labs. List the ranges for each lab (many labs have different ranges) as well as the meds/doses you were taking for each lab and any symptoms that corresponded to those labs.

Hopefully, you are getting FreeT4, Free T3 and TSH run - those are the right labs to get for Graves' disease.

Looking forward to hearing from you again!

Carol :)

If you want to read about a 'positive' ATD story here's mine. Click on this link:

http://www.dailystrength.org/group...

Thank you both for your replies. I have contacted my doc today and requested my labs. However, I have not requested any labs from my previous endo over the past 7 years but I believe I will do this today and I'm certain this will take some time to receive.

I'm done lots of research the past several days and enjoy reading personal experiences but I'm still uncertain of my decision moving forward. I have read both horror stories and stories of great success with RAI and all the same ATD that I'm still on the fence moving forward.

I'm young at 28 and feel I don't want to make any rash decisions that will effect me long term like the RAI but I'm also struggling with the fact I have been off and on PTU for 7 years and have yet to ever hit remission with my Edno #3 telling me I can't be on ATD's for life due to long term side effects. Endo #2 never gave me this indication and actually told me RAI was not the best choice for me because my levels were not terriable and thought we could fix it my the ATD's. I do like her stance of continuing the ATD's but I also feel the PTU gave me side effects. Being off my meds these past 6 weeks have been great and I feel well, not taking ANYTHING and normally I must take a XANEX every week if not more times a week depending on how I'm feeling. Since being off my meds I haven't even needed my XANEX. While on PTU this summer I actually had some new symptoms arise due to extreme heat intolerance and causing the doctor to want to perform and EKG to rule out any heart problems since I was having chest pains and also a MRI of the Brain due to constant dizziness and a feeling of full pressure in my head. Of course both tests proved negative on findings and after several months of suffering they just went away. I thought this was strange.

Again, thank you for your replies and I look forward to learning more and reading more as I make me decision on treatment best suited for me and my family. This disease causes such strife not only on yourself but the people you love the most that must also deal with the constant sickness.

I will post my labs from my most recent draw as soon as I receive them today. In all my years of seeing the ENDO there hasn't been one time they haven't changed my dose once my labs came in. It was a constant struggle and still never remission.

Glad to hear you'll be posting labs.

Lemme tell you, a BIG red flag went up for me when you stated that your endo never adjusted your dose.

Usually, a patient starts on a dose that gets thyroid hormone levels in range and then the dose is reduced to maintain a good level for the individual.

Most often, as time goes by and we heal from this disease, our doses get reduced because the meds continue to drive our thyroid hormone levels even lower and make us have symptoms.

And, just so you know, a person can take ATD's for a lifetime as long as liver function is not negatively affected (most meds, including Advil, affect the liver so it is prudent to monitor it regardless)

I know a person on another thyroid forum that has been taking ATD's for 30 years with no ill effects.

Sorry to say, sounds like your experience mirrors that of most of us - it doesn't sound like your doctor(s) have been medicating you properly.

This could very well be the cause of your symptoms.

Please, please, please hold off on any permanent treatment choice until you are 100% certain you have a doctor that will medicate you properly.

Looking forward to hearing from you again.

all the best,

Carol

Hi ! I have a few questions for you? Its probably obvious - but what is PTU? How long was it before you went into remission? I've had the disease for two years (that we know of) and I am still not balanced. I do not choose to do the RAI - I hear more bad stories than good. I have only heard two good stories actually. I am on methimazole (Tapizole) and I take Effexor XL (for depression). I think that is what your Paxel is for, right? I have leg problems too - I never thought it was the Graves. I don't know your age - but I think some of my mood problems might be do to pre-menopausal - although they say in all of my bloodwork everything looks normal. Of course - that is their answer to everything! Anyhow, I feel like a walking zombie - trying to figure out what symptom goes with what problem. I research so much I am starting to become my own best advocate. I live in Houston - and you would think I would have the worlds best doctor - but its been hard finding a good one. Anyhow - enough about me. I wish you the best and I really hope your health continues to get better and better. Cindy R

Cin

You know me, popping in ;)

PTU is another anti-thyroid drug - just like Tapazole or it's generic methimazole (MMI).

All of your symptoms sound hyPO to me......since most docs keep their patients hyPO, I bet that will be the case for you.

I think that, when you post your labs, you will discover that your FT4 is below mid-range.....and there's a good chance your TSH is in-range or possibly, even scarier, close to, or higher than, mid-range.

This is the exact opposite of where Graves' patients need to be and feel well.

I live in the metro NY area and had the same thoughts about good docs.....heck, even docs listed as "the best" fell very short when managing Graves' patients.

I was diagnosed in June 2007.....I saw a succession of a total of 3 endos. My GP told me I know more about Graves' than he does.

I just met with a "with-it" internist and she is THE FIRST doc that knows how to medicate me properly.

Can't say "Welcome to life with Graves' disease" - it's more like
"Welcome to the realization that I'm feeling lousy not because of my Graves' Disease but because my doctor is not medicating me properly"

It sucks.

You said it exactly CD, not being medicated right seems to be the problem in a LOT of cases, we are all finding this out, especially those who have been at it for 2, 3, 4 or more years.The more we look and talk to others it seems most are overdosed, either because of tsh or to keep us hypo and safe, not caring about what our symptoms are. It's too bad. I'm glad I can at least talk to my endo frankly about this and she doesn't look at me like I'm a silly woman, like the other endo did (a man of course..lol!)

Welcome,
I am sorry you are not feeling so well.
I have not heard of a good RAI story unless it involved thyroid cancer.
I was great for about 3 years after RAI and then whent sdown hill and have been fighting to get my life back ever since.
Not fun at all!
One more thing to through into the pool, My husband dose not have medical so I can't see the doctor or get regular labs done, or by meds. SOmething not to many people think about.
If I go with out meds for more than 6 days, I have to go to the hospital because I get that bad off.
The best thing to do is to find a good doctor that will medicate you properly and do proper labs to go with it. Together withtaking meds divided intp 2 or 3 doeses and watching for triggers and whatching what you eat and drink you will eventualy heal up and go into remission.
THere are people on one of the other support groups I belong to that has taken PTU for more than 20 years or so with no problems. There are others that have been on it not quiet as long but still have no problems. It can be done.

I hope this has helped you out some.

Angel

my mind just doesn't rest sometimes

Cin

Even if I'm wrong about the "place" I expect for your levels, I am confident you are not being medicated properly.

How am I so confident?

Well, you've said your doctor told you your levels were "normal"....in uneducated doctor's lingo, this means
in-range.

An in-range TSH is very unusual in Graves'.....in-range TSH often does not happen for at least 2 years.....some people never "see" TSH.

And, if you are having symptoms while "normal", I guarantee your levels are not "normal" for you.

Remember that shoe size analogy?

Do you wear a "size 7" thyroid level? As in mid-range FT4?

Or are you more comfortable in a "larger size" thyroid level such as mid-high range FT4?

Most people "wear" a "size 7" thyroid....most people feel best at mid-range FT4, at least.

So, if you are having symptoms with an in-range FT4, that level is not right for you....it doesn't "fit" you properly.

Stable thyroid hormone levels at the "best place" for you means feeling well while having Graves' disease.

It's that simple. I

Hi momtoone...Ive been reading over your history...I have to say...I think you have been mismanaged. Before making any permanent decisions I think it would be important to start all over again and see where it takes you. There are many people here who can help you with reading blood tests and dosing. Im not saying that down the road ablation shouldnt happen...but since you havnt had the chance to see if ATD's will work for you...its worth a try. In my opinion...keeping a partially functioning thyroid is better than no thyroid. Had I listened to both of my Endo's....I would not have one right now. They both led me to believe that having RAI would be the only way to cure my graves...thanks to the people here and Elaine Moore...I didnt do it. Ive been in remission since Jan. They would have killed a good thyroid.

The thyroid is such an important gland...its your bodies thermostat. I really dont understand why docs are so quick to just...remove it. I understand that in some cases its necessary to have it removed...that is a truth. But, from what I have learned over the last 2 years....mostly its not. Many people live very well and happy lives with there thyroid in tact either through remission with or without ATD's

You said you had an uptake scan...do you have the written results..were there any hot or cold spots? What % did you have vs acceptable range?

I would establish a base line...get labs done and post the results with ranges. Once you know where that is at you can start on PTU based on those results. Docs often overdose us and keep us overdosed. The symptoms you have described are symptoms when I am both hyper and hypo so its really hard to say until you get the results of your tests. Big Hugs...Kathy