# ANDROS - Doc still pushing for RAI or surgery



## Serenia (Sep 27, 2011)

Last blood tests in October 2011 (for comparison)

TSH - 0.08 (0.35 - 5.0) (still suppressed)
FT3 - 5.1 (2.6 - 5.7)
FT4 - 15 (12 - 22)

Got blood tests done December 8, 2011. 
Taking 5 mg MMI daily
Appt 3 days ago - December 14th

TSH - 1.39 (0.40 - 5.50)
FT3 - 4.7 (3.8 - 6.0)
FT4 - 9.7 (7.5 - 16.0)
TRab(TSI) - 6.3 (normal - <1.0, borderline - 1.0 - 2.0, elevated - > 2.0)

For the first time in 2 years my TSH is back in the normal range. Endo is very pleased. They are still ignoring the antibodies (TRab).

How bad would I get if I have a thyroidectomy with my antibodies still out of whack? Endo still wants me to have surgery or RAI.

What do I do now? I have said I dont want the RAI, I might be willing to have surgery - but WHY do they want me to have it?

My family doctor says that he has a patient who has been on MMI for 6 years and has had NO liver problems at all. My liver is looking great - last blood test for liver enzymes was in October 2011 - Doc says there is nothing showing up to be concerned about.

So why is my endo pushing for RAI or surgery?

Endo said - and I quote - "if you are still feeling bad whenever you go off MMI after 2 years, you will probably always feel bad so that means you will be on MMI for the rest of your life". 
I said I dont mind.
He said it would be better if you have RAI or surgery....

I would like to know WHY would it be better? 
Is it just because he is too lazy to treat my symptoms?

And what do I say (or do) if I DONT want to do RAI or surgery?

Serenia

PS My thyroid has never been enlarged although there were concerns about some nodules when I was first diagnosed in January 2010. I do not have a goitre. Endo says that would make surgery easier....


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## desrtbloom (May 23, 2010)

I suspect it is because your thyroid is diseased and being on the anti-thyroid meds for long periods of time beyond what they are normally used for which is to get your thyroid levels under control to go into remission or so that you can either have your thyroid radiated or removed is what the anti-thyroid drugs are for. If you don't go into full remission and have to take them for a lifetime, you will eventually have liver damage, etc.

I guess the question I would have is - why would you want to leave in a thyroid that is badly diseased (regardless of the size of it, goiter or not, it can still be extremely diseased due to the disease itself) that will continually cause you problems when you can have it removed which will not be a cure, but will eleviate the majority/if not all your symptoms for a lifetime? Yes, you will have to take thyroid replacement for the rest of your life, but the outcome of having it removed versus continually have your badly diseased thyroid spitting out poision in to your system seems like a good trade off to me.

Good luck with whatever decision you make.


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## webster2 (May 19, 2011)

desrtbloom said:


> I suspect it is because your thyroid is diseased and being on the anti-thyroid meds for long periods of time beyond what they are normally used for which is to get your thyroid levels under control to go into remission or so that you can either have your thyroid radiated or removed is what the anti-thyroid drugs are for. If you don't go into full remission and have to take them for a lifetime, you will eventually have liver damage, etc.
> 
> I guess the question I would have is - why would you want to leave in a thyroid that is badly diseased (regardless of the size of it, goiter or not, it can still be extremely diseased due to the disease itself) that will continually cause you problems when you can have it removed which will not be a cure, but will eleviate the majority/if not all your symptoms for a lifetime? Yes, you will have to take thyroid replacement for the rest of your life, but the outcome of having it removed versus continually have your badly diseased thyroid spitting out poision in to your system seems like a good trade off to me.
> 
> Good luck with whatever decision you make.


I agree with Desert, a diseased thyroid can cause a lot of harm as can prolonged use of ATD's.


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## Andros (Aug 26, 2009)

Serenia said:


> Last blood tests in October 2011 (for comparison)
> 
> TSH - 0.08 (0.35 - 5.0) (still suppressed)
> FT3 - 5.1 (2.6 - 5.7)
> ...


I think the doctor cares about you. If you want to get everything under control and get on with life, surgery probably is a very good idea.

How do you feel right now? Do you feel great? If you do, maybe you should not tamper with that!

If the antibodies and immunoglobulins do not have anything to attack, they usually become almost undetectable if not completely undetectable.


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## LisaD (Oct 18, 2011)

Serenia - I had been on PTU for 22 years with no problems until recently. I had to switch to MMI in October and have had many side effects including now dealing with a low WBC count. After all this time I am going to do the surgery but would not even be considering it if my anti-thyroid drugs had not stopped working. 
If your anti-thyroid drugs are working with no side effects you do not have to have surgery or radioactive iodine (I wouldn't even consider the RAI). If your doctor always makes you feel bad about it then I would change doctors. You can stay on anti-thyroid drugs for as long as they work. Good luck and stick to your guns! Lisa


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## Serenia (Sep 27, 2011)

LisaD said:


> Serenia - If your anti-thyroid drugs are working with no side effects you do not have to have surgery or radioactive iodine (I wouldn't even consider the RAI). If your doctor always makes you feel bad about it then I would change doctors. You can stay on anti-thyroid drugs for as long as they work. Good luck and stick to your guns! Lisa


Thank you Lisa,

To me there is no difference between taking 1 MMI pill every day and taking one hormone pill every day (which I will have to do when I go hypo after having my thyroid removed). So why NOT just continue as I am at the moment. I see nothing wrong with that.

So this is what I am going to tell the new Endo - I will continue seeing her every 3 months - and if she doesnt like it then I will leave her and just go through my family doctor who seems to be far more open minded than my ENDO!! 

The Family doc prescribes my MMI, and does the basic tests on a regular basis (TSH, FT3 and FT4)

I can always find another (more open minded) Endo at a later time.

IF and when the MMI stops working, then I will consider surgery.

Thank you for helping me to articulate what I wanted to say.

Serenia


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## Serenia (Sep 27, 2011)

Andros said:


> I think the doctor cares about you. If you want to get everything under control and get on with life, surgery probably is a very good idea.
> 
> How do you feel right now? Do you feel great? If you do, maybe you should not tamper with that!
> 
> If the antibodies and immunoglobulins do not have anything to attack, they usually become almost undetectable if not completely undetectable.


Andros

I was going through a bad patch a few weeks ago - but after an overnight stay in the ER (my legs swelled up and I thought my heart was in CHF again) I was given some blood thinners and I am now OK again.

I dont get the impiression that my ENDO "cares about me" And his true colours came out this week when he advised me that he was giving up all his thyroid patients and he was going to be working only with patients who have diabetes and high cholesterol.

So I have been transferred to a new thyroid endo (female) and will be asking her some very hard questions when I have my first appointment with her in March.

I will also be telling her what I mentioned above in my reply to Lisa.

Otherwise I feel fine!!


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## Andros (Aug 26, 2009)

Serenia said:


> Andros
> 
> I was going through a bad patch a few weeks ago - but after an overnight stay in the ER (my legs swelled up and I thought my heart was in CHF again) I was given some blood thinners and I am now OK again.
> 
> ...


Well for Pete's sakes. The good part is at least he admits thyroid is not "his bag!"

Glad you are feeling good; that is what it is all about! Thank goodness for that!


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## tespad (Oct 30, 2011)

I'm with you if everything is okay then leave it alone I know I'm not getting surgery unless it is life threatning.


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## polly (Oct 29, 2010)

Serenia - I chose to go the medication route after my diagnosis in 2006. I was taking Tapazole and everything was going well med wise up until about 1 1/2 years ago when my levels started going all over the place. I also had some drops in other blood work and my Endo started keeping a close check on them. Then in November 2011 I was diagnosed with another autoimmune disease, HSP http://my.clevelandclinic.org/disorders/henoch_schonlein_purpura/rheumatology_overview.aspx

Due to my thyroid levels being all over the place and my new diagnoses my Endo and I decided it was time for me to have a TT.

I am so happy I made this decision! Cancer never crossed my mind and in my research I never really found anything that indicated an association with Graves Disease and cancer. A small cancer was found so thank goodness I did have the surgery!

My Surgeon did a TT because if any thyroid tissue is left it can begin to grow again. Also RAI can make eye involvement worse.

I feel great since my surgery and for me, as a lot of people here, surgery was a breeze! If I knew there was ever a chance of cancer with my Graves I would have done this a long time ago.

I wish you the best whatever way you go.


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