Thyroid Removed?

ChgoGal · 10-07-2002, 03:53 PM

Has anyone ever done this? I was diagnosed w/ Hashimoto's in 2000 when they discovered a benign growth covering my thyroid. We've have been treating my thyroid w/ Synthroid for the last two years...my thyroid levels have been normal but literally nothing else has.

If any of you read the TTC forum, you'll know that for the past 2 years we've been trying to have a family and we've been unsuccessful. I chose not to have my thyroid removed when I was initally diagnosed but now I'm seriously reconsidering that decision.

I'm so damn frustrated right now. My new Endo and I discussed this option at my last appoint and IF I'm not pregnant since I underwent and IVF FET on 9/27, we're going to talk about removing the tumor that's covering my thyroid and most likely the thyroid as well. Her concern is that the growth is growing (is 1cm larger than last time) inward since it's not very visible.

Another course of action we've discussed is putting me on Metformin/Glucophage. My RE did an IR test which came out normal so he opted not to put me on it but my Endo said since he only did one test, that that is not truly indicative of someone being IR.

Do I sound desparate, because I am. My body has shut down and I don't know what else to do.

ChgoGal · 10-08-2002, 07:21 PM

Can't ANYONE help me? Please...am I the only one who's ever thought of taking this step?

VitaBella · 10-08-2002, 09:39 PM

Well, I don't know much about hypothyroid myself, but I figured that I could at least respond and give your post a bump.

I'm hoping that you are pregnant right now and won't have to worry about any of this...but in case you aren't, I'm not sure what benefit either thyroid treatment or Glucophage would have on TTC. Since IVF is so controlled and ovulation/conception is forced, I don't know if the meds would make much difference.

On the other hand, lots of women take Gluc during their first trimester to prevent miscarriage...so it obviously does more than just help with ovulation as far as making a good environment for conception. Maybe it would be beneficial after all.

Regarding your thyroid, I'm not so sure...but if you had it removed and were taking synthetic drugs, at least you would have complete control over the situation and won't have to worry about the tumor growing anymore.

As you can see, I have no tangible advice - but hopefully someone else will see this and be able to respond.

Best of luck to you!

ChgoGal · 10-09-2002, 03:33 PM

BuckeyeJen, thanks so much for the reply...sometimes it's just good to hear other people's thoughts on the subject matter. I appreciate the time you took to answer...have a great day.

VitaBella · 10-09-2002, 11:09 PM

No problem! Still no more advice, but I'll bump it again so someone else can hopefully help.

JessicaE · 10-10-2002, 09:49 PM

Hey Georgia!

Just saw your post. Yes, I have had thyroid surgery! In 1996, I had a left thyroidectomy (removed just the left node) for a suspicious nodule. It turned out to be benign, but they didn't know that until after surgery and biopsy (scans and needle aspiration were inconclusive).

I also have Hashimoto's, and at the time I asked them to remove the entire gland. The surgeon refused to do so unless the right side also looked really bad or had a tumor, saying that I should try to keep my normal thyroid function as long as possible. I did fine after the surgery, and my little half a thyroid continued to function well for five years -- I needed no synthetic hormone.

Fast forward to fall of 2001. I had always been on the lookout for LOW thyroid symptoms, but no one ever told me about the possibility of high thyroid. I had no idea why I was having heart palpatations, hand tremors, heat sensitivity, etc. I honestly thought I was dying. That went on for three months, but I tried to ignore it as best I could (I know, stupid). I went in for my routine annual thyroid check in December, and to my incredible surprise the levels came back high. Turns out I have a very rare complication called Hashimoto's Thyrotoxicosis. I refused the beta blockers they offered and sweated out the symptoms for a few more months. In March my thyroid finally crashed, and they put me on quite a high dose of synthroid to try to supress any natural hormone that might be left.

The moral of my story is that I deeply wish I would have insisted that they remove the entire thyroid. I was facing the possibility of another surgery, which is FAR more complicated (scar tissue and such) the second time around. This is still a possibility for me, but things are looking good right now. My current endo says that if I were his patient, he would have suggested the entire gland be removed back in '96. Just different philosophies, I guess.

The surgery itself was not bad. I left the hospital one day after the operation (they offered me the option to stay another night but I wanted to go home). Once I left the hospital, I used only Tylenol for the pain, although I had stronger drugs if I needed them. I was back at work in a week. My scar is practically invisible, tucked in the fold of my neck. I had an excellent surgeon, though, so be sure you check around. My friend had the same operation but her scar is smack dab in the middle of her throat, and they cut through her muscle, which caused some seizures for a few months afterward. (My surgeon just pushed my muscle out of the way - takes a little longer, but I'm sooooo glad he did!)

I hope this helps! PM me if you want more information.

ChgoGal · 10-11-2002, 01:38 AM

Jessica,

Thank you so much for sharing your story...it really means a lot to me and I really appreciate the information. I did have the option of removing it when we first found the mass/tumor but since it was benign my vanity took over (I was getting married and wearing a strapless gown). Also, we were confident that the Synthroid would help to shrink the mass and get everything back on track. Little did I ever know 2 years later I would still be struggling.

I know that removing my thyroid and ttc in some aspects are separate but I can't help but feel that with my thryroid in it's current physical state, it's contributing to my problems.

The one thing about TTC and the RE's is that pregnancy is their only focus and I think right now, I need that and more. Everyone was so confident that getting me pregnant would be easy - well, in a sense it is, but my body doesn't seem to be producing enough of what it needs to sustain a pregnancy - at least that's my fear.

And I will definitely quiz my surgeon about where he intends to make his incisions and his procedure!

Thanks again!

JessicaE · 10-11-2002, 11:11 AM

Glad to help. I hope you can come to some resolution about your thyroid soon. It may bring you peace of mind just to know that tumor is gone.

FYI, I was married six months after my thyroid surgery (in a scoop neck dress) and my scar didn't show at all. Again, a skilled surgeon can work wonders.

Cindy B · 10-12-2002, 07:29 AM

Georgia,

Unlike Jessica, I had a bad time after having my thyroid removed. I too like Jessica had an inconclusive growth on my left lobe. So I went to an Endo for a 2nd opinion. He said remove it. So we did. I used an ENT doctor for the surgery. He removed the left lobe but before closing felt the right side and felt some calcifications. So he removed that side too. In the process of removing the thyroid he damaged my parathyroids. I too stayed overnight in the hospital. I went home the next day and recouperated for 3 wks. I was concerned as I went back to work as my voice was barely above a whisper. I went back to the ENT and he scoped my vocal cords and found I had my left vocal cord paralyzed from the surgery. So I ended up in speech therapy. After 6 yrs I can say my voice is back, but when tired or stressed it still cracks.

I will say that my scar looks good though.

I am now on meds to help make up for the damaged parathyroids along with synthroid.

Good Luck with whatever you decide to do.

Cindy

ChgoGal · 10-14-2002, 12:47 PM

Cindy, thank you for sharing your story... I'm sorry to hear that you had complications as a result of the surgery. May I ask...what is an ENT doctor?

Cindy B · 10-14-2002, 10:15 PM

ENT is an Ear, Nose and Throat Doctor.

ChgoGal · 10-15-2002, 12:55 PM

Thanks!

kirst · 10-20-2002, 08:31 AM

Hi there
I'm so glad to hear that I am not the only person having this kind of problem. I have a growth on my left thyriod, and aspiration and scans are inconclusive. I'm awaiting an appointment where we will discuss whether this needs to be removed (It looks likely). This all happened at the same time I was diagnosed with PCOS, and I also felt like my whole body was shutting down!!! (I feel a bit more positive now, as I've been feeling a lot more like myself after starting to take Metformin).
Hopefully I can get the op soon, and I'll certainly be making the point about pushing the muscle out of the way! I'd love to be TTC, but my doctor has advised me to get this problem sorted out first, which I agree with.
Anyway, it would be great to hear some positive news from you, so I hope things go well.
Will post any update on my diagnosis/op.
Good luck!
Kirst

JessicaE · 10-23-2002, 12:56 PM

Good luck, kirst! I remember what a scary time that was... (((HUGS))) I'm sure everything will turn out just fine for you. Even if it IS cancer, thyroid cancer is very treatable/curable. Here's hoping for a quick and positive outcome!

kirst · 11-21-2002, 01:57 PM

Hi again
I've just come back from the Dr, and will be having my thyroid removed next Monday, so fingers x'd that all goes Ok. Tests still inconclusive, which is a bit frustrating, but at least it's not bad news at the moment. Good news is that my CT scan showed no lymph problems, which I was worried about...less good news is that my calcium and vitamin D levels are low, which could also indicate a hypoparathyroid problem!! (If these things come in threes then that's the lot hopefully!!! - PCOS, Thyroid needing removed, Parathyroid - This is me paying for having brilliant health up till now!!!)
Anyway, there are worse things I guess!
Would be good to hear nice news from anyone else....
K :-)
x