It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Thyroid Disorders Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 08-27-2008, 12:45 PM   #1
Newbie
(female)
 
Join Date: Aug 2008
Location: Western North Carolina
Posts: 7
Vanessa777 HB User
Have the thyroid gland removed or have it destroyed with radiation?

Hi, I have Hoshimoto's in a big way and my doctor is suggesting that I either have the thyroid gland removed or have it destroyed with radiation. What are the side effects of destroying the gland? My life is hell right now but I don't want to make a mistake by destroying it if I would have worse problems afterward. Is there anyone out there that has an experience that can help me out? I am so worried about what I should do. Thanks

Last edited by moderator2; 08-30-2008 at 10:38 PM.

 
Sponsors Lightbulb
   
Old 08-27-2008, 12:55 PM   #2
Junior Member
(female)
 
Join Date: Jun 2008
Location: Tx
Posts: 19
nessanjeff HB User
Re: Have the thyroid gland removed or have it destroyed with radiation?

Hey Nessie,

I was wondering why do you say you have Hashimotos in a big way? Is some worse than others? I am just curious because I too have it, I was diagnosed in February of this yr. Did you get your labs back with the antibodies? Also we have the same name. I hope all luck to you, maybe we can talk about it and help each other through it.

Nessa

Last edited by moderator2; 08-30-2008 at 10:36 PM.

 
Sponsors Lightbulb
   
Old 08-29-2008, 09:08 PM   #3
Newbie
(female)
 
Join Date: Aug 2008
Location: Western North Carolina
Posts: 7
Vanessa777 HB User
Re: Have the thyroid gland removed or have it destroyed with radiation?

Hi Nessa, I am so glad you responded to my message. In my case, I have such a high count of antibodies attacking my thyroid (test showed over 1000 when it's supposed to be under 30) that I have to keep changing the amount of thyroid medicine. Once in a while I get hyperthyroid but most of the time I am hypo and have to keep increasing the Armour. It had gotten so bad for me (feeling lousy almost all of the time) that my doctor had suggested that maybe I should have my thyroid destroyed so I won't have to keep dealing with my fluctuating thyroid. As you probably know, when the antibodies attack the thyroid, it makes it release less hormone and then when the antibodies are less active, the thyroid makes more. So my level of hormone is constantly changing. I have been dealing with this up and down for 4+ years and this last month was so bad that I cried to my doctor about how bad it was and he tested numerous things and said we may have to destroy the thyroid with radioactive iodine. I hope I don't have to go that route because then I would be radioactive for about two weeks and would not even be able to sleep with my husband for about a week. Sounds scary to me. On top of that, I have no idea how people fare when they have had their thyroid totally destroyed (or removed for that matter). Anyway, one test that I had this week revealed a sphenoid sinus infection and now I have been on an antibiotic for about 4 days. The sphenoid sinuses are in the center of the head right next to the pituatary gland. Since I have been on the antibiotic, I have been feeling so much better and have had to keep cutting back on my thyroid medicine due to my heart rate being too fast. It appears that somehow the antibiotic is either clearing out an infection that was affecting my pituitary gland (which control the thyroid) or by clearing out the infection, it is reducing the inflammation and antiboties. I have not had to reduce my medication for 6 months and had gotten up to 345 in Armour. The doctor said that I was either not absorbing it or the antibodies were just so bad that it wasn't having much affect. I am feeling much better now so I am hoping that I will get over this infection and get back to the 'normal' for me which is feeling good 1/3 of the time, feeling okay 1/3 of the time, and feeling lousy 1/3 of the time. I feel good when my medicine is just right, okay when I am in transistion, and lousy when I am getting low in thyoid hormone. What are your experiences with Hoshimoto's? Is it as bad for you? I have pernicous anemia too which aggravates the situation. I have to take B-12 shots a few times a week (it runs in our family so there are 5 of us on it). I would love to have someone else to talk to about Hoshimoto's as I know no one else who has it. People that are just hypothyroid have no idea what I go through because they stay on the same dose of medicine and feel find. They rarely have to change their medicine and just can't understand why I feel lousy most of the time. Well, I would like to talk to you again and compare our thyroid stories : ). Thanks for writing, Nessie

Last edited by moderator2; 08-30-2008 at 10:36 PM.

 
Old 08-29-2008, 10:51 PM   #4
Senior Veteran
(female)
 
Join Date: Jan 2003
Location: Missouri, USA
Posts: 12,343
midwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB Usermidwest1 HB User
Re: Have the thyroid gland removed or have it destroyed with radiation?

I have Hashi's that's been successfully treated for nearly 4 years. I will emphatically tell you there's no way I would ever take radiation for it. Besides the reasons you mention, there are studies that show an increased likelihood of various cancers decades down the road. Who needs that?!? The only reason I would accept it is as an after treatment to surgery for thyroid cancer.

Now... If it was bad enough, I would consider thyroidectomy. I can recall two members here a few years ago who had such terrible effects of Hashi's that they underwent surgical removal and were very glad they did it.

Are you absolutely sure your doctor is correctly prescribing your Armour dose? He should be relying on your free T4 and free T3 levels plus symptoms, and completely disregarding your TSH.

It can be a tough decision to make. I understand your dilemma and wish you the best in making the right choice for you.

Last edited by moderator2; 08-30-2008 at 10:36 PM.

 
Old 08-30-2008, 11:26 AM   #5
Newbie
(female)
 
Join Date: Aug 2008
Location: Western North Carolina
Posts: 7
Vanessa777 HB User
Re: Have the thyroid gland removed or have it destroyed with radiation?

Hi midwest1,
Thanks for responding to my plea for help. Just last night I replied to one other member and my reponse is very long and it may help you to understand my situation a little better. As far as the doctor, I am one of the very fortunate ones that has a doctor that will go by how I feel instead of only by the tests. He does look at the T3 and T4 and knows that the TSH levels can be deceptive. He has other thyroid patients that cycle, and he also knows that I know my body very well, am very careful, and he lets me adjust my dosage (which is always in small amounts at a time) when I feel the need. I know when I have to increase because my symptoms are very clear to me and if I don't pay attention to them, the next day I am sick and in bed all day. One thing that helps me to recover more quickly, I have discovered, is that when I have to increase my Armour, I put the small amount that I am increasing under my tongue and let it dissolve and be absorbed directly into my bloodstream. I start to feel the improvement in 4 or 5 hours rather than 24 hours. It has really helped me with less 'down' time. Now, you say that you have been successfully treated for 4 years. Do you have to change your thyroid medicine frequently? What are your antibody levels? My antibody levels used to be half of what they are now (over 1000) so now I am constantly struggling with the fluctuations due to these terrible antibodies that won't leave me alone. Also, you mentioned that you would never have the radiation done on your thyroid. Why would destroying it that way be worse than having it removed? I would be afraid to have it removed as there is a slight chance it might affect my vocal cords and I talk all day for my job and wouldn't want to take that chance. I wish I knew how people fared after surgery and/or radiation. Do they then feel good all the time or do they still feel lousy? Do they feel normal again? If they didn't feel normal again after all that, what good would it be to have it removed or destroyed? Well, thank for your response and I hope to hear from you again. Nessie

Last edited by moderator2; 08-30-2008 at 10:36 PM.

 
Old 09-02-2008, 10:54 AM   #6
Junior Member
(female)
 
Join Date: Jun 2008
Location: Tx
Posts: 19
nessanjeff HB User
Re: Have the thyroid gland removed or have it destroyed with radiation?

Wow you poor thing. You are going through so much. I was just diagnosed back in February for Hashi's. I have both the antibodies. The THYROGLOBULIN ANTIBODIES were at 695 and the THYROID PEROXIDASE ANTIBODIES were over 1000. My doctor would not treat me considering my t3 and t4 came back normal. But my TSH was high. I am very confused as well. I did have the rai done and that came back at 32% uptake. But I still cant find any help. So i guess Im on my way for an Endo hunt. Ya lets keep in touch on here and see how others are doing. Hope all the luck for you.

Nessa

 
Old 09-03-2008, 07:05 AM   #7
Senior Veteran
(female)
 
Join Date: Apr 2007
Location: Hesperia, CA
Posts: 541
Suey77 HB User
Cool Re: Have the thyroid gland removed or have it destroyed with radiation?

From what I've read here most would do surgery before radiation for the reasons that Mid-west describes.

Could you write a FEW paragraphs when you post ?? A medium or b-i-g one is VERY hard on my 49 year old eyes

 
Old 09-03-2008, 07:17 AM   #8
Senior Veteran
(female)
 
Join Date: Jan 2002
Location: Detroit Suburb
Posts: 1,058
Eagle HB UserEagle HB UserEagle HB User
Re: Have the thyroid gland removed or have it destroyed with radiation?

No radiation for me, period, and also it seems to me doctors have been somehow made so afraid of prescribing thyroid meds that if you had your gland surgically removed you very well may have a very hard time getting enough medication. My late mother went through that.

Also she had cancer several times after having thyroid destroyed, not saying there was necessarily any connection but it's probably never been investigated, and I don't know if it was by radiation or by surgery. Probably radiation, if they had it in the 1920's, judging by her having had cancer, right? Shoe stores used to have xray machines to help fit childrens' shoes, and people used them for fun sometimes. They were long ago removed. I wonder how many had cancer from that?

 
Old 09-03-2008, 12:51 PM   #9
Newbie
(female)
 
Join Date: Aug 2008
Location: Western North Carolina
Posts: 7
Vanessa777 HB User
Re: Have the thyroid gland removed or have it destroyed with radiation?

Quote:
Originally Posted by nessanjeff View Post
Wow you poor thing. You are going through so much. I was just diagnosed back in February for Hashi's. I have both the antibodies. The THYROGLOBULIN ANTIBODIES were at 695 and the THYROID PEROXIDASE ANTIBODIES were over 1000. My doctor would not treat me considering my t3 and t4 came back normal. But my TSH was high. I am very confused as well. I did have the rai done and that came back at 32% uptake. But I still cant find any help. So i guess Im on my way for an Endo hunt. Ya lets keep in touch on here and see how others are doing. Hope all the luck for you.

Nessa
Hi again Nessa, I sure hope you find a good doctor that is willing to treat you according to symptoms as well as test results. I would never feel good again if it wasn't for my doctor. You need to find a doctor that is willing to think outside the box and treat you according to what makes you feel better. I tried 5 different thyroid combinations until my doctor found the right one for me. I take Armour and a little bit of Cytomel. I thought I was going to have to have my thyroid removed because I was doing so poorly but now I am doing very well. I took antibiotics for a sphenoid sinus infection last week and I guess the infection was somehow affecting my thyroid (or pituitary gland) because I have been feeling wonderful and have even gone hyperthyroid so I am still slowly cutting back on my Armour. My doctor was concerned that I may go hyperthroid (don't ask me how he knew that), so he cut me back a whole bunch to start the day after I started the antibiotic. Amazing! The only other time I went hyperthyroid was when I was put on an antibiotic for an infection once before. Does anybody else out there ever have that happen where clearing up an infection makes the thyroid start working properly again? I don't know if it affects the antibodies that attack my thyroid or what. All I know is that I feel SO much better now. I hope to never have to have my thyroid removed but I am so grateful for the people who responded to my pleas for help. I now know that I would never have radiation if it came down to having to do something drastic to my thyroid gland. Nessie

 
Old 09-03-2008, 02:29 PM   #10
Senior Member
(female)
 
Join Date: Aug 2007
Location: usa
Posts: 297
tired47 HB User
Smile Re: Have the thyroid gland removed or have it destroyed with radiation?

Dear Vanessa777,
I have had major thyroid symptoms flare up with antibiotics. This is the first I have heard it from another person, the drs. do not understand it or believe it.
Another question for everyone- can you still have Hashimoto's if your antibodies are low _
my labs said less than 10 and had to be 35 or higher for abnormal. I certainly have all the symptoms of hashimoto's, feel fairly normal for a few weeks and then wham... racey heart, anxiety, weight loss, ect... and then it gradually gets better til next time. I had read somewhere that up to 20% testing error to diagnosis graves/hashimoto's. True or not true?? Is there a definite test??
Thanks all!!

 
Old 09-04-2008, 01:30 PM   #11
Junior Member
(female)
 
Join Date: Jun 2008
Location: Tx
Posts: 19
nessanjeff HB User
Re: Have the thyroid gland removed or have it destroyed with radiation?

Hello again Nessie,
Well I am so glad you are feeling better. I don't think I would have the radiation either. I did have the small dose for the RAIU. I have read so many bad stories about people getting cancer later on down the road from having it destroyed by Radiation. But also we take risks in everything we do. The surgery would be a risk. So you would have to decide on the pros and cons of both. I did just have a hysterectomy 3 weeks ago. Again there were risks but I had a lot of female problems. A lot of women out there say that theres were worth it. As for me, I am still considered pre-op so I don't know yet, what was best for me. I just need to find a doctor that knows what they are talking about and can deal with all of me instead of part of me. I am so thankful for all of you out there reading our posts and responding. It is greatfully appreciated.
Nessa

 
Old 09-04-2008, 06:29 PM   #12
Newbie
(female)
 
Join Date: Aug 2008
Location: Western North Carolina
Posts: 7
Vanessa777 HB User
Re: Have the thyroid gland removed or have it destroyed with radiation?

Quote:
Originally Posted by tired47 View Post
Dear Vanessa777,
I have had major thyroid symptoms flare up with antibiotics. This is the first I have heard it from another person, the drs. do not understand it or believe it.
Another question for everyone- can you still have Hashimoto's if your antibodies are low _
my labs said less than 10 and had to be 35 or higher for abnormal. I certainly have all the symptoms of hashimoto's, feel fairly normal for a few weeks and then wham... racey heart, anxiety, weight loss, ect... and then it gradually gets better til next time. I had read somewhere that up to 20% testing error to diagnosis graves/hashimoto's. True or not true?? Is there a definite test??
Thanks all!!
Hi Tired, your name is so fitting. We who have thyroid problems know that word only too well. You said that you have flare up with antibiotics. Do you mean that you have trouble taking antibiotics or that antibiotics help your thyroid and that you then need less thyroid medicine? My situation is that whenever I take an antibiotic, I have to reduce the amount of thyroid medicine because it appears that having an infection affects my thyroid (maybe the antibodies attacking it?). Anyway, now my doctor knows that whenever I need an antibiotic, he will automatically cut me back on the thyroid medicine. Last January, I went to a clinic on a Saturday with a sinus infection and they put me on Zithromax. 3 days later I became hyperthyroid and was having a hard time with sweating and racing heart. I cut back on the Armour and eventually had to cut back by over 100 mg. In answer to your question, when you have Hoshimoto's, many things can cause the antibodies to attack in various degrees. Stress, sickness, overwork, etc. can make the antibodies to malfunction and attack the thyroid more than usual. When you are tested, sometimes it will show a lot of antibodies, other times not as much. I've been tested where it is at 550 and then recently it was over 1000 (lots of overwork and stress lately). In your case, that may be happening to you. Too bad that your doctor can't test you right on a day that you are feeling lousy to see what's going on. Maybe on the days that you are feeling the racing heart, maybe the antibodies are less than usual so your thyroid is putting out more hormone. But I guess that would be a question for your doctor. A bit of interesting information for you all, my husband has Hoshimoto's (his antibodies were almost 1500) but he needs no thyroid medicine because his T3, T4, and TSH are really good. Somehow, his thyroid compensates. He does feel run down about once a week if he overworks himself. Our doctor let him try taking a small dose of Armour but it didn't seem to make a defference so he's not needing it. What are you on for thyroid medicine? You also have to find out exactly what is right for you. It took me 6 months to find the right medicine and dosage. It's been a fight for me all along but you just have to plug through it. I totally enjoy the days I feel good and just bear the tough ones.

 
Old 09-06-2008, 03:56 PM   #13
Senior Member
(female)
 
Join Date: Aug 2007
Location: usa
Posts: 297
tired47 HB User
Re: Have the thyroid gland removed or have it destroyed with radiation?

Dear Vanessa777,
HI! To answer your question when I am on antibiotics my heart usually races more, and I feel terrible. The stronger the antibiotic, the more severe the reaction and then my BP goes very low! The worst time I had was with levaquin, don't want to take it again. Tried it 3 times, and each time same reaction, racey heart, but very low BP.
As for my thyroid med I am still trying to get diagnosed. I am on the very bottom of Free T4, low T3, normal TSH, and below normal total T3. I just started seeing a homeopathic Dr. who says I need thyroid meds but he is worried about my heart racing more...don't want that to happen.It has been very crazy lately on its on. I go back to Cardiologist this week to discuss changing meds because it is sometimes very fast even when doing nothing.
My antibody level was <10 and the test said it had to be > 35 for positive antibodies, so I guess I am not there. I am just VERY confused how I could have the conflicting symptoms- severe fatigue,muscle spasms, rapid heartbeat,chest pain, large weight loss over the last year. I had 1/2 thyroid removed for benign nodules, which immediately after all the symptoms started, PERFECT health for the other 46 years of my life.
Thanks for you imput and best wishes to you and your hubby, sounds like he has good control over his condition. Take care!!!

 
Old 09-09-2008, 11:30 AM   #14
Newbie
(female)
 
Join Date: Aug 2008
Location: Western North Carolina
Posts: 7
Vanessa777 HB User
Re: Have the thyroid gland removed or have it destroyed with radiation?

Quote:
Originally Posted by nessanjeff View Post
Hello again Nessie,
Well I am so glad you are feeling better. I don't think I would have the radiation either. I did have the small dose for the RAIU. I have read so many bad stories about people getting cancer later on down the road from having it destroyed by Radiation. But also we take risks in everything we do. The surgery would be a risk. So you would have to decide on the pros and cons of both. I did just have a hysterectomy 3 weeks ago. Again there were risks but I had a lot of female problems. A lot of women out there say that theres were worth it. As for me, I am still considered pre-op so I don't know yet, what was best for me. I just need to find a doctor that knows what they are talking about and can deal with all of me instead of part of me. I am so thankful for all of you out there reading our posts and responding. It is greatfully appreciated.
Nessa
Hi Nessa. Boy, if you just had a hysterectomy, you are really going through a time! I hope you are feeling better now and more back to your old self. I hope you are still looking to find a good doctor as it is SO important. I have been doing great (2 days more of antibiotic left), except I did have a bad day yesterday. My son got one of those stomach bugs at college 2 days ago and my husband and I had to drive 2 1/2 hours in the middle of the night to get to him there at college. Whenever he gets one of those terrible bugs, he usually ends up in the hospital dehydrated unless I am there with phenargan and pumping him with fluids after every time he throws up. Guys don't take care of themselves very well sometimes. Anyway, that night I only got 1 1/2 hours of sleep and the whole thing was very stressful. We got back on Sunday evening and I did sleep almost 10 hours. The next day, though, it was obvious that the stress from our trip and lack of sleep made my immune system unhappy and the antibodies started attacking my thyroid again and I felt like I just wanted to die. The horrible symptoms of intense headache, feeling cold, holding water, no energy, can't think very well, etc, were screaming at me to increase my thyroid medicine. Once again, I had to increase it and now I am finally back to normal. I know from the past, that if I ignore the symptoms, I will end up in bed for days suffering and waiting for my pituitary gland to tell my thyroid to put out more hormone. Then, if I were to be tested then, my TSH would be too high. I was feeling so good there for about a week, I was confident that I would continue to do so. It was depressing to have these struggles again. I guess I will wait and see how things go over the next 2 months. If I continue to suffer like this, I will have my thyroid removed cause I can't take living like this anymore. I've had 8 surgeries before, starting when I was 12, so I will have another if I have to. When I first thought of the possibility that I might have to have surgery, I was just overwhelmed with fear to have to go through another surgery. But, since yesterday, after feeling so awful, I got to thinking that it would be better to go through the surgery than suffer like this all the time. I answer the phones in a company all day long and yesterday, I had enough tears between calls to make my eyes look even more puffy. It's so hard to take care of an office when you are suffering and can't think straight. What difference in today though, I can think clearly, get my work done, and even respond to my online friends here. I so appreciate you, Nessa and all those that respond to me. I need every one of you. Still, is there anyone out there that has had their thyroid removed that can tell me how they fared? I just hope I do well if I do have to have it removed. Bye Nessa and thank-you and all others as well.

 
Old 09-10-2008, 01:19 AM   #15
Senior Veteran
(female)
 
Join Date: Jan 2002
Location: Detroit Suburb
Posts: 1,058
Eagle HB UserEagle HB UserEagle HB User
Re: Have the thyroid gland removed or have it destroyed with radiation?

FWIW, I think we've discussed the cancer dangers of radiation, both in this thread and in others. Some of us don't want even the tracer dose they use for thyroid Ultrasound testing.

I've said before, but I don't remember which thread, my mother had cancer several times the rest of her life after having her thyroid removed and that I'm GUESSING it must have been by radiation, although she never told me. It wasn't known, apparently, back then there was a cancer risk. Even if they told me now there's no danger I don't think I'd accept that. Obviously I'm a cautious person, and dread having even dental xrays. Not many have digital xrays which are said to be less dangerous. Good luck.

Last edited by Eagle; 09-10-2008 at 01:20 AM.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Does anyone have Neurofibromatosis? kerrysmom95 Neurofibromatosis 5 05-11-2010 06:12 PM
thyroid problem after mantle field radiation-hodgkins lymphoma mclinda Thyroid Disorders 1 07-21-2008 07:07 PM
Must have uptake and ablation next week hypfranh Thyroid Disorders 33 03-12-2008 07:04 AM
GCC have question for you. vickie45 Thyroid Disorders 1 08-20-2007 04:07 PM
Anyone have radiation/Xray as a child and now have thyroid problems? suggi Thyroid Disorders 3 07-09-2007 09:17 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 12:41 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!