I desperately need your opinion-surgery?

[JolieFille]

Hello,

I have been reading this forum for a long time.  I have had Hashimotos for 4 years now. I have only had one decent lab value during this time.  I just cant tolerate thyroid replacement. Most recently I am suffering with Hashitoxocisis.  I had a FNA, a week ago on a largish nodule and it came back negative for maligancy.  I am hyper to the point of vomiting, My BP is high while taking BP meds.  Then I crash in bed and become a zombie crying and depressed!  I have 2 small children who I cant take care of.  I have had a housekkeper/nanny for 3 years now so that we can survive.  I just want my life back and I made an appointment  this week for a surgery consult.  Im going to beg the doc to take it out!

I have bouts of hoarsness, nodule is very deep and I am constantly clearing my throat.  I have a family history of thyroid disease faternal side.  All of my grandmother and great gmas, and aunts have had thyroid disease.

Of course, I have not found good doctor and most of the time I just doctor myself.  I just cant take it anymore!!!

Im most greatfull for you thoughts!

Jolie

[stella5349]

Your situation is different - you were Dx Graves and only Graves. This is a double antibody situation where Hashimoto and Graves mixes together.

Glad to hear though you are doing well.

[Totie]

I had surgery because of not being able to control my graves. I had graves disease/hyperthyroidism. I went untreated for 6 months due to the fact that my doctor believed all my symptoms were from depression, never even ran blood tests in that time. My doctor happened to be out the day I called to say my neck had enlarged so I saw the doctor on call. He diagnosed me 30 seconds by having me stick my hands out. (uncontrollable shakiness).  I was sent for an uptake and was admitted then and there. My entire body system was so out of control. We tried the radiation iodine pill, but it did not work, so two weeks later they had to remove it all. It saved my life. Most of my symptoms disappeared. I do not regret the surgery one bit, and honestly i was never given a choice on the surgery.

Strange that has been my luck lately. I had other gland problems of the neck area and was not given an option of surgery either and the FNA was done after surgery not before. I read a lot on where they do the FNA first and then decide on surgery when the results come in.

[AR-10]

In Europe, the first choice for treating Grave's Disease is PTU therapy or Methimazole. They are both drugs that slow the thyroid down, and at the proper dose will shut the thyroid off, or make it dormant.

Mild Grave's can be controlled this way (just enough PTU to balance the thyroid hormones) for a long time barring liver problems.

Many Grave's patients in the U.S. start out taking these drugs, and if they do not go into remission in a year or two RAI ablation is suggested.

RAI ablation is not surgery. Surgery is "the last resort" unless a goiter is causing problems or a cancerous nodule is suspected. This is because surgery on a hyperthyroid patient is the most risky of the three options.

That addresses Grave's disease. Hashimoto's is another subject entirely. Hashimoto's patients go through surgery for a variety of reasons, although most Hashimoto's patients keep their thyroid rather than surgery or RAI.

You will be offered RAI as an alternative to surgery. Unless the structure of your thyroid screams "rip me out!", you will be talked out of surgery. Especially if you are stuck in a hyper phase.

You said that you just cannot tolerate thyroid replacement medication. I assume you mean Levothyroxine of some sort. You also said you have both Grave's and Hashimoto's.

Could you expand on your test results and your history a little more? I'm wondering if you have both, or if the various medications you have tried are making you feel that way.

Have you been on thyroid suppression medication for Grave's?
Are you taking Synthroid or some form of hormone replacement drug? Maybe both at the same time?

Are you flipping from hyper to hypo randomly, or is it that you cannot tolerate hormone replacement therapy and the medication drives you hyper, you cut back on medication and go hypo, the dose is increased and you go hyper, over and over?

The reason I ask is this;

If you have strictly been taking a Levothyroxine product and having all these problems getting stable, will you have the same problem with no thyroid?

Are you overly sensative to that drug, or is your thyroid just plain unmanagable?

I went for a year and a half flipping back and forth, on one drug to shut my thyroid down and another drug to compensate for a sleeping thyroid. It didn't work. My thyroid was free of nodules or cancer, so my request for surgery was denied and I went through RAI therapy.

It was the correct decision, I hope.

My opinion is, anyone who has been treated by a COMPETANT DOCTOR and who's medical history shows that treatment is not able to control thyroid hormone levels should consider ablation. Either surgery, or RAI to kill the gland.

My concern in your case is that 1) You may not have received proper treatment, and 2) you may not be better off if you cannot tolerate a dose of hormone replacement large enough to compensate for a gland that is no longer there.

Please don't feel like this is The Spanish Inquisition.

I am trying to understand fully what your diagnosis is, what your tests have looked like, especially antibody tests, and what medications you have tried.

Devoid of any further input, I would say rip it out.

However, if you could answer my questions and explain your situation a little more clearly, I would feel more comfortable telling you to remove an organ.

I have a journal you could read if you wonder why I ask all these questions. I am not in very good health these days because someone wanted to "save my thyroid". You will see why I have no hesitation to "rip it out" if all other methods fail.

I just would like a better picture of what is going on in your case.  

[ChitChatNine]

Although 1/2 my thyroid is gone due to different diagnosis than you, I have to say that for me, it is ok -- & I am on synthorid cause the other side never worked again.   I know we differ in DX's so what is ok for me may be different for you with your Graves afterwards.  I'm not sure on that.  AR and Stella know lots as well as all the others who have posted.

C~

[stella5349]

I think you would find a absolute most benefit and wonderful advice from a member here as AR-10 he - at least as much as I know - you have the exact situation he has been fighting for a few years.

I will contact him on a PM and see if he can take a look at this for you.

[JolieFille]

Thanks for those who gave me suggestions.

my question is:  Not many people seem to have thyroidectomy's for graves/unstable thyroid.  The way i understand, in europe--surgery is the first choice.  

i have hashi and graves and i just want my thyroid to be gone.

did/does anyone else feel this way?

thanks much

jolie

[898]

Just asking, in case you are on the high iodine diet, lowering iodine consumption may reduce the severity of symptoms.

[LittleEd]

I too cannot offer any help, but you do have my empathy. I really don't know how folks with kids do this. I swear--I can't even hang on myself. I can't imagine having kids to take care of. I go through all those emotions too. I think of death and cry, then get mad, then feel really sad, then get bitter, then get sad again. The anger is under control now, but last winter I had trouble with that. Anger wasn't really the word. It was more like sudden, uncontrollable rage, sometimes verbal and sometimes physical. I was breaking things, throwing things and just tearing right into bosses at work. It was very hostile and I was supsended and put on probation and had to do therapy and shrinkdope before I could return to work. In a way I'm grateful I don't have kids, because they would've been in harm's way.

I hope you get the help you need. I hate taking drugs myself, and usually don't push them at folks, but Zyprexa and a little Trazadone (on top of all the other drugs I take) have helped me SOME. Maybe your doc needs to help you out. I also take Xanax too.

[Cynnieb4]

Oh i am so sorry. I think that a few of members will reply to you. I went hyper this year before on meds. I am thankfully responding. What are your levels? Do you have any at the moment?  Are you on meds??  It sounds like you are about ready for the surgery if can't get stabilized. I am all new to this stuff as well. But hopefully ar will post he is pretty good at this stuff and should be able to help you out!

[ChitChatNine]

I don't have enough experience with your condition but say hello and WELCOME!

C~