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sheritap 09-16-2004 01:15 PM

help...Going to remove thyroid. HELP
 
Ok I am trying to figure out what happens next. So I guess I will start with what happened first.
1.) 13 years ago I had hot spots and took the radiation treatments.

2.)1998 Tumor removal and partial hyst.(1/3 of right ovary left in for hormone reasons as I was only 27 at the time. )

3.) 2000 Left behind ovary grows another tumor and I have all of it removed.

4.) 2003 start having heart palpitations, hair loss, muscle fatigue, mood swings, drying skin, petichie, floaters in left eye, ringing in right eye. So we stop HRT all together. stops most symptoms but causes leg cramps. I deal with that on my own.

5.) May 2004 sudden weight gain dry skin returns hair starts falling out and neck begins to get tight and swells.

6.) June 2004 Thyroid scan shows multiple 'Hazy" areas with lumps. Begin treatment with .88 synthroid. Heart begins to race, leg muscles seem to lock in place, constipation hits an all time high. voice begins to lower, hair on my legs quite growing, hair on my face begins to grow. after 3 weeks cut pills in half.

7.) August 2004 legs are still killing me so I quite taking the meds all together. I start to wake up 3-4 times a night and have all together stopped sleeping in the bed when hubbie is at work (he is on midnights).

8.) Today the doctor said the thyroid is growing to rapidly and just needs to come out. Calls surgeon and sets it up for 9-27-04

Now what happens to me I do not have a clue.

sheritap 09-16-2004 03:23 PM

Re: help...Going to remove thyroid.
 
Also what are some of the medications that I can study up on? A friend of mines mother said to only use true thyroid. What is that and why? I know that synthroid did'nt work but could it post surgery? or should I just give up on it? This is enough to make a grown woman cry.

Gopherhead 09-16-2004 03:36 PM

Re: Going to remove thyroid.
 
Sherie, I just wanted to let you know that you're not alone - this is very frustrating and I've been reduced to tears many times. Have you had a look through the Information Archive? There's a lot of great information from posters on just about every topic.

I've done a lot of reading lately on Natural vs Synthetic and it's the way I'm going to go; it just makes more sense to me. The Natural stuff contains all the hormones our bodies make (when they work!) and I figure if our body makes them then they must be of some use. Synthetic T4 (synthroid) contains only T4 and doctors will tell you that's all you need, but again, if our bodies make all the others then ?? Many people do a lot better on the Natural med, and not just a lot better than with no meds, a lot better than on the synthetic. I mean years ago doctors had no clue what a lot of things in our bodies did so why should this be any different?

Hang in there - I am sure you'll get some solid advice :)
Nat

sheritap 09-17-2004 08:34 AM

Re: Going to remove thyroid.
 
Can you have the thyroid removed and NOT take medication? I think that the AROMR sounds like it is working well for everyone that is on it so if I have to start a medication I will ask for that first. I NEED to get rid of the 34 pounds I have gained since this problem started so do you know if you can find diet supplements that are ok to take with armor?

Gopherhead 09-17-2004 09:15 AM

Re: Going to remove thyroid.
 
Sheri, most thyroid meds specifically say 'do not take diet pills with this' - the good news is of all the meds the natural ones seems to help with weight loss the best.

I am pretty sure you end up on thyroid meds once it's removed; you need those hormones and w/o a thyroid this is the only way to get them.

Nat

pokiedot 09-17-2004 09:32 AM

Re: Going to remove thyroid.
 
Sheri,
I had my Thyroid removed 5 years ago, I had graves disease, and have been taking synthroid ever since. I have had no problems. It took them a little while to get my medication regulated but once they did I had no problem losing the weight that I gained. I visit my doctor once a year for blood tests and he writes my prescription for a year. No problem!
Now, Gopherhead, what are these natural meds you're speaking of armour? What is that and I would be curious to maybe add something natural to if it works. Let me know!

Gopherhead 09-17-2004 11:44 AM

Re: Going to remove thyroid.
 
Armour (in the US) is natural desiccated thyroid gland from pigs and you'll find that a lot of people who don't fare well on synthroid do much better on it. There is a good deal of information on it (and other topics) in the Information Archive.

If the synthroid is working for you so well it might be best to leave as is, you know? Getting everything just right can take a lot of tinkering and can be frustrating, especially if you've got it working well right now.

Nat

sheritap 09-17-2004 01:06 PM

Re: Going to remove thyroid.
 
Ok I think I am going to do the research on Armour first. Synthroid deffinatly does not work for me. I am 35 I have 2 very active children and a wonderful husband. I want my life back. I want to be able to wear my wedding ring, go to the kids sporting events without feeling like I am melting or freezing. I don't wish to shed another useless tear. I want to be Sheri again and not this sad emothional blow fish that I have become.
I am scared about the surgery but it seem like the only thing that will work. I have been able to do all the things I had set out for in my life and now I feel like I am just rolling with the punches. Not enough energy to fight back and to sad to care. This is not the kind of person I wanted to be when I grew up. Thank you guys for posting some great information and letting me boohoo on the post. I read somewhere in here about some good books but I do not remember where I found them and I didnt write the names down. Could some one suggest one or two?

Gopherhead 09-17-2004 02:16 PM

Re: Going to remove thyroid.
 
Sheri, it's amazing how awful this can make you feel. I'd gone from being an active fit woman to basically a slug - even carrying on a conversation took too much energy so I'd stop talking.

A definite one to check out is [I]The Thyroid Solution [/I] by Dr. Ridha Arem

Nat

sheritap 09-19-2004 08:39 AM

Re: Going to remove thyroid.
 
Do you know after they take it out what kind of meds I will be put on in the hospital? Or should I request the Armour befor I go under? What other things should I be asking about post removal? I have my second visit to the surgeon on Tuesday and I don't have the first clue of what I should ask her. And I don't want to miss anything. It is kind of like a whirl wind right know. Thursday they say it is coming out, set the date for 9-27 I have read alot about this on the posts but I have not talked to any one yet. I feellike I can ask the surgeon anything since I liked he in our first meeting but I don't know what questions to ask. From what I have read here I will only be in the hospital for 1-3 days(hope 1) I can go back to work soon and should not talk for a couple of days. How long until I feel better? How long until I lose weight? What meds should I ask about? Thanks for any advice. I am going to the store to get meals to pre cook for the family so my husband and kids don't starve....

Gopherhead 09-19-2004 09:45 AM

Re: Going to remove thyroid.
 
Sheri, I don't know much about thyroid surgery but I do know it's been discussed a lot on this board. I did an advanced search and found quite a few threads on the subject. Here are a few that might answer some of your questions:

http://www.healthboards.com/boards/showthread.php?t=165635&highlight=thyroid+removed+surgery

http://www.healthboards.com/boards/showthread.php?t=205494&highlight=thyroid+removed+surgery

http://www.healthboards.com/boards/showthread.php?t=206714&highlight=thyroid+removed+surgery

And here is a link to the search function:

http://www.healthboards.com/boards/search.php?

Nat

sheritap 09-19-2004 03:37 PM

Re: Going to remove thyroid.
 
Well now that I have read all that I am scared that I am letting them cut on me for nothing. Here is my personal battle.....I have this HUGE thing growing in my neck that I can feel when I swallow or lay dow. I can not wear any of my clothes since I have gained 3 dress sizes in 4 months. And I can not quite the mood dips and dives. I want to think that if they take it out and put me on Armour I will 1 no longer have the bulge in my neck 2 be fun to be around and 3 be my normal size again. Hopefully the hair will stop falling out the skin will not be so dry the hot/cold will level out. But I am so lost about if I am dreaming or if it can realy happen..................

NodiGoiterGirl 09-20-2004 11:15 AM

Re: Going to remove thyroid.
 
I had my thyroid out in April of 03. I had a goiter just like you, medication levoxyl, wasn't shrinking it even after a year so they had to take it out.
I woke up after my surgery and was so sleepy. I barely remember crawling from the gurney into my bed. My neck was all taped up, I had a drain put in the wound, it was a tube going into a clear bubble on the end. This was gross to see. My throat was really really sore, and I couldn't talk well. I only threw up once after surgery, didn't hurt as bad as I was fearing. I remember having to pee alot that night. Whenever my roomate rang the nurses, I had to pee. By the next day I tried to eat solid food, throat still hurt pretty bad. They did a strep test and everything, but it was just from surgery. My incision seemed huge to me at the time, but now after over a year of healing, it's not that noticible anymore. Took a while for the red puffiness to go away. I used scar healing ointment for a little while but made me itch too bad.
I think I was in the hospital for two days and went home on the third. I rested in bed two days and then was on the treadmill by the end of the week (wish it wasn't just for that one day! I'm such a slacker.) The sooner you can get off the pain killers the better.
I was initially put on .075 of synthroid and have only changed once to .088 and seem to be holding steady. I don't have to see the endo for another year, so that's nice.
Almost all of my thyroid symptoms have disappeared since the surgery and I am much happier with how I look. Weight gain has not been a problem for me, suprisingly. I held at the same weight before and after my surgery. If I had exercised I don't think I would have had a problem losing the weight. Now I have had a stomach issue for the past three months and have lost 18lbs otherwise I would still be 187 probably.
I am glad I had it done. I'm afraid I would still be miserable if I hadn't.
Good Luck to you,
Nodi

sheritap 09-20-2004 12:38 PM

Re: Going to remove thyroid.
 
Oh Nodi, Thank you so much for the reply. I am so uptight right now what with the do I or don't I. I have decided that since eventually I will have to have it removed, now is the right time. I have not hit rock bottom as of yet so maybe this will prevent that from happening. I am trying to stay positive until surgery. The body temps WILL stop fluctuating. The weight gain WILL stop. The mood swings WILL stop. The leg pains WILL stop. That is how I will think for the next 7 days and the I will go to sleep and the twin growing in my throat will go away and I can begin to live life the way I used to. All of the people on these posts are wonderful inspiration to those of us struggling with this horrible nasty problem.

K9Mom 09-20-2004 03:01 PM

Re: Going to remove thyroid.
 
sheri, your thyroid gland swells when you are HYPOthyroid. It enlarges to try to trap more iodine to make more thyroid hormone.

If you have quit your thyroid hormone replacement medication, then that is most likely the cause of your thyroid swelling.

You are post-RAI treatment and therefore need replacement hormone to have normal thyroid levels.

After a thyroidectomy you will also need to take thyroid replacement hormones for the rest of your life. Thyroid hormone is necessary for life...without it we die. If you cannot take Synthroid, then you should make sure you can take another thyroid hormone replacement medication as you will be dependent on it for the rest of your life.

There are many different brands of thyroid replacement hormone....levoxyl, unithroid, etc. Each has different fillers. And also Armour as the others have mentioned.


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