Thyroidectomy or Radioactive Iodine for hyperthyroidism?

Keea

Hi there,
Wondering if anyone can help me with their experience. To cut a long story short, I was diagnosed with hyperthyroidism, age 30, in August 2006. My husband and I were ttc at that time. I was put on neomercazole and thankfully I got pregnant a few weeks later. I had my first beautiful daughter in June 2007 and had a second beautiful daughter in March last year. Throughout my pregnancies I was kept on a low dose of nermercazole. I am currently on a 'block and replace' programme so taking 20mg neomercazole and 25mcg elthroxin. Lately I have been having episodes of anger (irrational) and I'm irritable and anxious. Doc says its all to do with thyroid. I have been told my doctor and endocrinologist that I cannot stay on neomercazole long term and will have to consider my options which are thyroidectomy or radioactive iodine. Has anyone been through either. Radioactive iodine sounds like the easy option but I have two young kids - how could i possibly be away from them for 2 weeks? On the other hand, a thyroidectomy is major surgery and brings its own risks. Additionally, if I have any of these, how do they affect ttc if we decided in a year or two to try for another baby.
Has anyone had experience of either? If so, I've love to hear your experience.

dollydishmop

BLimey, did your doctor know your were ttc when he/she put you on Carbimazole (CBZ)? Its known to cross the placenta and cause birth defects, and it also enters a mother's milk. I have alway understood that if you are ttc, pregnant or breast-feeding the doctor or endo should take you off CBZ and put you on Propylthyroucil instead, as that is a much safer anti-thyroid drug with regards to prgnancy/breast-feeding etc? Glad it all worked out for you, and your beautiful daughters

I'm currently on CBZ, and scheduled for a total thyroidectomy.

I was initially given the choice between surgery and RAI....but then eye complications ruled out RAI...as RAI is contra-indicated where there are eye-problems (TED, exopthalmia, photophobia etc)...so now I'm facing surgery and the choice has been removed from me.

I can't advise which one would suit you best...I can only offer you the choice I made (when I had a choice) and my own reasons for doing so.

The choice I made was to go for surgery. My thyroid is so out of whack it doesn't know which way is up or down at the moment, and it has been like that for a long time. The tiniest CBZ dose alteration sends my TSH spinning wildy up or down, and I regularly swing from extremely hyper (my official diagnosis) to extremely hypo...fingers crossed, after much longer than my Endo hoped, we are finally (we hope!) getting some control over it...but its certainly showing no signs of going into remission whatsoever.
The reason for the total thyroidectomy is due to a large, multi-nodular goitre...which is affecting my speech, my breathing, my swallowing, my sleeping, and at times it even affects how I hold my head.
I figured the total thyroidectomy would get rid of that mother' once and for all, where as RAI isn't guaranteed to work first time, and may need repeating in the future....oh, and in my case, RAI won't actually get rid of my goitre, it'll just kill it. Whilst it *may* reduce a little in size, it won't reduce that much...
I also didn't like the idea of willingly putting radio-active material into my system.
And then added to that all the other complications of having RAI, eg staying isolated for up to 2 weeks, staying away from children for a certain amount of time, not being allowed to ttc for potentially up to 2 yrs afterwards etc.
So I plumped for surgery, to force myself into a hypothyroid state, resulting in a condition that is a little more manageable, and be on drugs which I am told are much safer for ttc, pregnancy etc.

My husband and I have no children, and would like to start a familiy as soon as my Endo gives the go-ahead (and after he changes me on to Propylthyroucil), and in my mid-30's I didn't want to wait an additional 2 years before we were allowed to start ttc and with all the associated goitre problems...truly, I just want it gone, cut it out and throw it away....it doesn't work and I don't want it.

So that was my choice (when I had one) and my reasons for making it.

All I can advise, is do as much research as you can. Ask for as many opinions as you can.
There are huge pros and cons for both options, hence why they are offered.
Its a *BIG* decision either way, and don't be pressured into choosing one over the other other, unless your Endo/GP is offering valid reasons for doing so (and not just because one option is easier for them to administer)

CathyMoran

I had the radioactive iodine but my dad had the surgery, you neec to balance the pros and cons of both...looking back I would have gone for the surgery. Am underactive now and am 31 weeks pregnant...yes they will monitor you but there are worse things than that.

Keea

Thanks for your replies. Yes, I'm going to have to research both options more. I have been told either option will suit me and that I have to make the decision. Its a hard one to make though. CathyMoran, why do you say looking back you would have had the surgery? Just curious about that. dollydishmop, I dont like the idea of radioactive iodine in my body either. Surgery may be the option I take because of my kids. At least they could see me after the operation. By the way I never heard that about CBZ and ttc. My GP knew at the time I starting taking CBZ that I was ttc. Endocrinologist knew I was on it when I got pregnant but left me on small dose throughout pregnancy. Thankfully all was ok as I've said and I have 2 beautiful daughters. Good luck with your own situation.

LegacyUser

Congratulations on births of your daughters.

I relate to your descriptions of "episodes of anger (irrational) and I'm irritable and anxious. Doc says its all to do with thyroid."

I am hypOthyroid, so I am more aware of issues on that end than hyPER, but my first cousin and another friend had hyPER probs and one had a partial thyroidectomy and the other the radioactive iodine treatment. Both are now dealing with their hypOthyroid conditions.

I have learned from my research into thyroid issues, that it appears that perrmanent treatments for hyperthyroidism tend to render one permanently hypOthyroid (I emphasise the hypO as it is the opposite of hyperthyroidism) which will then require treatment for the rest of one's life in many/most cases in order to bring one's thyroid levels (not TSH levels, but active freely available levels of the various aspects of the thyroid hormones themselves in the bloodstream) to the levels that your body needs.

As I do not have Hashimoto's, I do not have much knowledge of it, but is it possible that you have that condition? or that your combination of medications is, in essence, inducing the same symptoms? (swinging from hyPER to hypO, basically).

Has your doc ever tested your FREE T4 and FREE T3 levels? (emphasis on FREE - not "total.") Regular public labs normally refuse to test those. If your diagnosis is based solely on results of your TSH (Thyroid Stimulating Hormone) levels, I would suggest that you would benefit from finding out as much as you can about that particular test and find a way to have ALL ASPECTS of your thyroid levels tested.

The TSH test does not test the levels of thyroid hormone in your system. It tests what the pituitary gland is doing, NOT how much of the various thyroid hormones themselves are present and available in your system.

A website which is an excellent source of information regarding thyroid-related conditions is:
http://www.stopthethyroidmadness.com

While it concentrates more on hypOthyroid conditions, it has some information/links on hyperthyroidism.

Its primary premise (re: the "madness") is its viewpoint against over-prevalent use of synthetic T4-only treatment for hypOthyroidism by inaccurately informed, brainwashed doctors. Eltroxin is synthetic T4-only.

But, if you search, the site (and links) addresses considerations, alternatives, information, etc around the subject of hyPERthyroid conditions.

It might be in your best interest for you get as much balanced info about it as possible before allowing a non-reversible treatment to be performed on you.

Wishing you the best of luck and hope you will be feeling better soon.

Tee

cyning

I had the radioactive iodine done about 4 years ago now, and it was definately the right decision for me. I still have problems wih my thyroid but nothing like i had on neomercazole. Or when I went into a thyroid storm.

I was 20 and in college; was told to stay away from kids and pregnant people for a week only and my thyroid was perfectly stable for the next 2 years: went wonky then but has straightened out since (who knew coming off the pill would sort all my problems :rolleyes:)

Keea

Thanks for your replies everyone. Just wondering Cyning, could you explain how taking the radioactive iodine works and where did you go for it? I dont know enough about it. Is there anyone I could contact about it.

CathyMoran

Just found out that my hubby has it...sort of funny as both of us have had it now...he cant take the iodine as I am pregnant but it will be difficult for him taking the other tablets as he is having problems with his crohns...am hoping that he will have the surgery long term as dad had no problems since with his. I got mine as a young child and went underactive a few years after treatment.

cyning

Keea wrote: »

Thanks for your replies everyone. Just wondering Cyning, could you explain how taking the radioactive iodine works and where did you go for it? I dont know enough about it. Is there anyone I could contact about it.

I'm not an expert by any means: for me I was seen by the endo in Galway. I then got given the RAI: just a tablet that someone with gloves on put in my mouth. After some ridiculous amount of pregnancy tests too come to think of it! :eek: Not nice at 19! It was done where they did radiology and chemo in the hopital. I walked in and out of the hospital, took the week of college and just hung around: I wasn't sick after it except for mouth ulcers and that was more than likely coincidence because I was been plagued by them as my immune system was way run down.

It might be irreverisble to have the RAI but id much rather have had it then be overactive: it is way harder to control.