Graves' Disease Support Group

Graves' does not go away after the thyroid is gone....and, yes, the antibodies stay with you.

Here's a link that shows the effect that each of the three treatment options has on the Graves' antibodies

http://eje-online.org/cgi/content/...

A emotion-based decision is not usually a good one.....a well-informed decision is most often the best one.

For anyone making recommendations to you about your treatment choice, I would hope they have fully researched all treatment options before making any recommendations.

When people are hyper they are in no frame of mind to make a permanent decision. This is when most docs try to push people to do this. It's the people who have not researched this disease at all or it's treatments that usually get talked into it at the beginning. If you were on the right dose, you could be fine. You went hypo on the dose the doc gave you, then you stopped taking the meds and went hyper again, this is why you feel like crap. It's your decision but you don't need to rush, you can get another doc and go back on meds.

P.S. this IS the second doc? Oh boy......

yes this is new doc....there are really not a lot of endos in my area...i drove 2 hours today to and from. now what.....

Okay, what dose were you on before this happened?

Don't take the dose you went hypo on, you could try lowering it till you see another doc, you have pills, right?

Several forum people had suggested to me that a GP, Internist, Naturopath or Osteopath are often better at treating Graves' than endos.

I am meeting with a GP on Monday who shares her practice with an acupuncturist and chiropractor - she comes very highly recommended by an acquaintance of mine. The acquaintance had RAI 11 years ago, was chronically mis-managed and started seeing this doctor for "whole-body care" 7 years ago. The GP still tests her blood every 8 wks. and makes dose adjustments as needed.

Two of my former endos wanted to let me go 12 weeks after a dose adjustment!!!

Here's a website that lists "Top Thyroid Docs" by state....their names were submitted by patients and sometimes, patient comments are listed.....some of the doctors are GP's. In fact,
a GP on this site is on "my list" to interview.

http://www.thyroid-info.com/topdrs/

Please realize that any treatment for Graves' requires lifetime monitoring. With RAI and surgery, meds are taken afterwards for a lifetime.

You need to find a doctor that will care for you properly if you want to be healthy and feel good.

Since the care out there is often less than adequate, you'll need to educate yourself about Graves' and be proactive in your care.

It won't necessarily be easy but it's more than worth the effort.

Sorry - just had to add this PS

Think about it, your first endo mis-managed your medication.....you don't even know how endo #2 would manage your medication - he's telling you to do the RAI - how do you know for sure that he is capable of managing your medication after RAI?

Thyroid hormone levels can fluctuate wildly after RAI - it's all due to the flood of antibodies produced after RAI - check out that chart on the 1st link I gave you - it shows the progression of antibodies for each of the 3 treatment options. Antibodies are what caused your hyperthyrodism in the first place.

You need to first find a doctor that will dose you properly now - then you will know if can trust that doctor to dose you properly after RAI or surgery.

There's no quick fix with Graves'.

Hi there carla:

I'm adding my input to what others said. Remember you went hypO on the ATD that you were just on. The ATD worked for you. Then you went hypER after being off of the ATD for two weeks.

What does this tell you? Doesn't this tell you anything about whether or not the ATD worked for you? Whether or not your thyroid levels moved?

In order to understand your thyroid disease, research is the key here. You must understand how to handle your thyroid health whether you stay on ATD, get an RAI, or have a TT.

This means you must learn how to be proactive with your thyroid health. You must be able to get labs every so often. You must learn how to dose your meds whether you take ATD or replacement med and understand your lab results.

You will be on meds, either ATD or replacement med for life. Please, please learn how to do the things to be proactive with your thyroid health.

Don't let a doctor mismanaged your thyroid care whether hypER or hypO. Believe me, there are doctors out there who do not know how to treat either hypER or hypO.

{{{hugs}}}

carlajean...my GP manages my graves and does a very good job. I am in remission now... since Jan. I havnt seen my Endo now for almost a year. If it were me...I would do what has been suggested...go on a lower dose of ATD and wait until your next blood test. For me...I find it helpful to get them done every 4 weeks. This allowed me to keep a close eye on what direction I was moving in. I was on 300mg of PTU at the start. I went hypo within 3 months. I lowered my PTU by 100 mg every second blood test in the beginning. When I got down to 100mg of PTU per day split up at least 3 times a day and was still hypo...I would reduce by 25 mg every second blood test. The lowest I got on PTU was 37mg spit up 3 times a day. I had to get a pill splitter in order to take that dose. When I showed hypo after the second blood test I stopped all together.

When I got down to 100mg per day...it was me that made the dose reductions. There comes a time in everyones treatment where only you know when to reduce. You go by how you feel and the results of the blood tests. Many docs will keep you hypo....since everyones feel good spot is different...as long as you are within range docs wont make that reduction. I know that I feel my best with my FT4 at 16.5...that could be to hyper for you...you may feel your best with your FT4 at 14.5...that would be to low for me. See my point!

There are 2 things you must do to manage your graves and treatment...regardless of what you choose. Research and self management. You have to learn how to read and understand your blood tests. You need to learn how the meds effect you and your blood tests. I have a record of every test I had taken...I have the med doses vs blood test results vs how I felt vs what my diet was or wasnt. When you do this you will see a pattern emerge. That will be an extremely helpful tool for you. It will empower your choices and it will not allow you to be talked into anything. Good luck with this carlajean...I know you can do it...remember...better days are coming. Big Hugs...Kathy