Author: Sorting Last Post on Top ↓ Message:
IDEBORAH's Photo IDEBORAH Posts: 919
6/26/14 8:06 A

My SparkPage
Send Private Message
Reply
I had no problems with the ablation but had my hormones monitored every month for six months before I hit the right dose of snythroid. It's been nine months and I am beginning to feel more like who I think I am

This is the last time I'm losing this weight.


 Pounds lost: 15.2 
 
0
18
36
54
72
KRSS60's Photo KRSS60 Posts: 617
4/5/14 10:22 A

My SparkPage
Send Private Message
Reply
I did the ablation would do the surg. if i had to do it over again. When i was finally started on meds, i was so sick I thought i would die. At least with surg. you start on meds right away.

 current weight: 146.6 
 
198
185.15
172.3
159.45
146.6
EMS-WIFE's Photo EMS-WIFE Posts: 820
4/30/12 1:13 P

My SparkPage
Send Private Message
Reply
Good for you!

Ultra-Mom running strong
I am endurance


Member of: Buff Boomers, Biggest Loser Fans, Geocachers for Weightloss, Spark Califonia.

Team Leader: Hyperthyroidism or Graves Disease

...tomorrow is a new day with no mistakes in it yet. ~~~ LM Montgomery, Anne of Green Gables


 current weight: 167.0 
 
167
159
151
143
135
LADYDIVINE67 SparkPoints: (118)
Fitness Minutes: (0)
Posts: 5
4/30/12 11:07 A

My SparkPage
Send Private Message
Reply
Thank you for reply, Nevermind2010.

I found a Naturopathic Doctor and she had me to a "Spit Test" she is checking for Candida, food allergies, and any imbalance my body might have and awaiting my results. Till then, I will continue to take my meds, get lots of sleep, and watch my nutritional intake. And, I will definitley get my thyroid levels checked regularly. My next doc appointment is not until May 9, 2012 so wish me luck!

I'm glad I found this thread!

NEVERMIND2010's Photo NEVERMIND2010 Posts: 577
4/29/12 5:51 A

My SparkPage
Send Private Message
Reply
LadyDivine, you should see a reduction in those symptoms fairly quickly. Others may arise. For me, it was hair fall and weight gain. Neither is nice, but they are better than the alternative. Keep up with your meds, try to eat right, and make sure you get in to the dr to get your levels checked regularly and often.

You might also want to try limiting caffeine. No more sugarfree Redbull. Sigh.

Hang in there!

 current weight: 220.5 
 
223
201
179
157
135
EMS-WIFE's Photo EMS-WIFE Posts: 820
4/26/12 8:43 P

My SparkPage
Send Private Message
Reply
Welcome LadyDivine67. We are here for you so feel free to post questions and we will try to help you out. Just remember to take notes of anything you are not sure of to ask your endo. Get lots of sleep, watch how you eat, because your metabolism has just hit a brick wall due to the medications. Good luck

Sophy

Ultra-Mom running strong
I am endurance


Member of: Buff Boomers, Biggest Loser Fans, Geocachers for Weightloss, Spark Califonia.

Team Leader: Hyperthyroidism or Graves Disease

...tomorrow is a new day with no mistakes in it yet. ~~~ LM Montgomery, Anne of Green Gables


 current weight: 167.0 
 
167
159
151
143
135
LADYDIVINE67 SparkPoints: (118)
Fitness Minutes: (0)
Posts: 5
4/13/12 1:03 P

My SparkPage
Send Private Message
Reply
Hello everyone ... I have just been diagnosed with Graves/Hyperthyroid. And I'm not sure what to expect or what my experiences will be with taking Metoprol (Beta-blocker) and Tapazole. I am truly afraid of getting worse. For the past year or so I have been experiencing the same symptons as some of you have. Such as, heart racing, palpitation, insomnia, too much energy and so on ... I hope to make friends on this site and get help and inspiration from you all.

Take care

M_DENISE_C's Photo M_DENISE_C Posts: 32
1/29/12 8:43 P

My SparkPage
Reply
Wow. Just reading all the responses shows how people with Graves have such varying experiences. I was diagnosed in September and I opted for RAI the next day! I had no qualms about it and wanted the symptoms to decrease pronto. I could tell I was headed for a storm or something, believe me. The beta blockers helped immediately, too. Just now have I been put on synthroid. Of course, I might have rethought the RAI if I was of child-bearing age, but I am older so it was not an issue. The gradual appearance of the symptoms and the symptoms themselves were so annoying. I was happy to find a diagnosis for sure. Funny how I have apparently entered the hypo zone, but have been more energetic than ever (without all the nasty symptoms I had when I was hyper). You just never know and everyone is different. I have had no eye problems whatsoever. I think the disease was caught fairly quickly, though, compared to some people, mainly because I had my yearly physical when it was happening at its worst.



 Pounds lost: 16.0 
 
0
10
20
30
40
SVABODA's Photo SVABODA Posts: 55
7/13/11 1:11 P

My SparkPage
Send Private Message
Reply
My doctor told me my thyroid has to be completely removed, either by surgery or the iodine. I'm currently on meds to get my levels down. Do I pick which one, and if so, which option would be the better choice?

Nadia Svaboda

"That's the thing about running: your greatest runs are rarely measured by racing success. They are moments in time when running allows you to see how wonderful your life is." —Kara Goucher


 current weight: 125.0 
 
165
152.5
140
127.5
115
PEGGYH2011's Photo PEGGYH2011 SparkPoints: (0)
Fitness Minutes: (2,518)
Posts: 13
5/15/11 9:06 A

My SparkPage
Send Private Message
Reply
Hi all, my hyper/Graves started with a thyroid storm...don't have one if you can help it. But the problems started with my eyes, and noone could figure it out...til then. Anyway, after many months of tapazole, radiation came about. It is said that if there is an eye problem, it can be worse after radiation. But I had the RIA and my thyroid is gone I am told. So the synthroid is my friend for the rest of my life. Although I have NEVER gotten rid of the hyper symptoms, ever, no matter what dose. But I would probably do it again. Two things I would love to fix-my eyes (my facial appearance) and my weight. I am struggling with the weight and it just comes off too slowly for me. It is good for me to see that some Graves patients HAVE lost weight successfully. I am just having a hard time of it. One of the things is that others don't understand that if your thyroid is messed up, EVERYTHING is messed up, and it's not an excuse. Then there are people WITHOUT thyroid problems that blame their weight on thyroid...that's when the jokes start...anyway, glad to be here and glad to be Sparking with y'all. Thanks for listening, and I am drawing inspiration from your posts.
Peggy

 Pounds lost: 2.1 
 
0
6
12
18
24
ILOVEMY2BIRDS's Photo ILOVEMY2BIRDS Posts: 2,646
4/30/11 1:31 P

My SparkPage
Send Private Message
Reply
Beta blockers help with tremors also. It really has a calming effect on Graves symptoms. I was taking 1 a day for the past 3 years but started feeling anxious and edgy all the time, so the doc upped my dose to 2 a day and I have been happier ever since. You can start with a really low dose... don't rule out its benefits.
Also I am curious about the PTU side effects you are concerned about... all it does is decrease thyroid hormone synthesis, and blocks the conversion of thyroxine (T4) to triiodothyronine (T3). I never experience a side effect. The only time I had trouble with it was when I needed a lower dose and went "hypo" for a week, but lowering dose took care of it.

 Pounds lost: 0.0 
 
0
3.25
6.5
9.75
13
TECHWORM's Photo TECHWORM Posts: 32
4/24/11 7:00 A

Send Private Message
Reply
The radioactive iodine ablation was an option for me. But my symptoms just started in December. I just started PTU 2 days ago and wish to see how I do within the next 3 months. The side effects of both can be serious. Quite a dilemma.

I oped not to take beta blockers as I waited months for my nuclear testing. Racing heart isn't my main symptom. What bothered me the most was hang/leg tremors and diarrhea.

Edited by: TECHWORM at: 4/24/2011 (07:01)
 Pounds lost: 18.0 
 
0
24.75
49.5
74.25
99
ILOVEMY2BIRDS's Photo ILOVEMY2BIRDS Posts: 2,646
5/10/10 9:01 P

My SparkPage
Send Private Message
Reply
BTW... I do have Graves and have been successfully managing it with PTU and beta blockers for the past 3 years. My doc said that my thyroid will eventually burn itself out so if medication is working and I am not having side effects then there's no need to go for RAI.

 Pounds lost: 0.0 
 
0
3.25
6.5
9.75
13
ILOVEMY2BIRDS's Photo ILOVEMY2BIRDS Posts: 2,646
5/10/10 8:56 P

My SparkPage
Send Private Message
Reply
From what I understand, there can be also attacks on the tissue behind the eyes by the autoantibodies produced in graves disease. Therefore, I was lead to think that there is no eye concerns in hyperthyroidism unless it is due to graves autoimmune disease.

 Pounds lost: 0.0 
 
0
3.25
6.5
9.75
13
FDEVINE1's Photo FDEVINE1 Posts: 136
4/25/10 7:48 P

My SparkPage
Send Private Message
Reply
I'm hyperthyroid, but tests didn't indicate any graves disease. Do I still need to worry about the eye problems if I have the ablation? Or is the problem only if you have graves disease?

Frances



Trying harder in 2010.


 Pounds lost: 0.0 
 
0
15
30
45
60
SOPHIADARE's Photo SOPHIADARE Posts: 316
5/28/09 1:20 P

My SparkPage
Send Private Message
Reply
Thanks for filling me in on how things worked for you! It's becoming clear, as I do research, that surgery is a more frequently used option than I thought.

It sounds like you've been going through a lot. Three cheers on getting through with what is obviously a fabulous attitude in a rotten situation!

Sophia Dare


 current weight: 212.0 
 
224
221
218
215
212
PEGGYE36 Posts: 9
5/28/09 7:45 A

My SparkPage
Send Private Message
Reply
Hi Sophiadare,
I had a complete thyroidectomy four weeks ago following a long process after my Grave's diagnosis in October 2008. I had one enlarged eye, tachycardia weight loss, sleeplessness and was very edgy. I was originally planning to have the ablation which is intended to slowly kill off the thyroid during which you are stabilized on anti thyroid medication. I unfortunately had an allergic reaction (rash) and it was too risky to stay on anti thyroid Med's for the several months it takes for the radiation to work.
This is a very personal decision, both surgery and RAI have excellent results. The eye disease can worsen after RAI. Do some reading talk to your Doctor and ask to speak with people in your area who have had RAI as well as surgery. There is time as long as your symptoms are being managed with beta blockers and anti thyroid medications. Thyroid storms are not as frequent as some of the reading may have you think. Talk to many and make your decision based on what you feel is the best decision for you. I am very pleased with my decision. I had a great surgeon, quick recovery and feel so much better now. I have my para thyroids and I neeed to supplement with calcium and take synthroid daily.
Good luck.

 current weight: 192.2 
 
194
184.25
174.5
164.75
155
SOPHIADARE's Photo SOPHIADARE Posts: 316
5/26/09 1:23 P

My SparkPage
Send Private Message
Reply
The reason my doc is strongly for RIA is that she doesn't want anything there for the antibodies to mess with, so she wants it GONE. That's one big reason I'm looking into the question much more carefully.

Of course I don't want to get caught in a thyroid storm, and I'm grateful I don't seem to have any of the eye problems (yet), so maybe I should go ahead, but I really appreciate your response. I want to think this through carefully. Since I am responding to medication, I have enough time to consider and formulate a plan. Thanks for your help!

Sophia Dare


 current weight: 212.0 
 
224
221
218
215
212
ALIEN8's Photo ALIEN8 Posts: 5
5/26/09 12:41 P

My SparkPage
Send Private Message
Reply
In the past, (I've read) they would surgically remove part of the thyroid and try to leave the 'correct' amount. That approach is obviously becoming popular again, only now its done with radioactive iodine. (It wasn't an option back when I got nuked).

I also remember being told that the Graves was 'killing' my thyroid. After a partial thyroid removal, the Graves auto-antibodies are still present, so I wonder why they wouldn't 'kill' the remainder of your thyroid? Maybe the more active uptake parts (incl. goiter) are killed by the limited-dose I-131 and the less active parts remain, and so what remains is somehow stronger and more resistant to the Graves antibodies? (that would be nice)

The noticeable, immediate effect of complete RAI for me was that my 'happy meter' scale only goes to 8 where before it went to 10. Not great, but there are worse things that can happen to a person... In any case, if you can keep part or all of your thyroid, that might be best. If the remaining portion eventually 'dies', then at least you had a few more years with some natural thyroid hormones.

I'm sure you have already read that besides a small RAI correlation, smoking drastically increases your chances for Graves eye disease.

(Sophiadare: thanks for asking that question, I have been 'offline' for years and am learning a lot from the posts here)

 current weight: 170.0 
 
175
168.75
162.5
156.25
150
GAPEACH79 Posts: 76
5/25/09 2:29 P

My SparkPage
Send Private Message
Reply
I was diagnosed with hyperthyroidism/Grave's Disease about 4 months ago. I did a TON of research and was dead set on not doing RAI prior to meeting with my Endo. I wanted the pill or nothing. But after long discussions and lots of crying with my Endo and family I chose RAI. I do not know your plans for the future but I was diagnosed at a time when I was trying to get pregnant. I wasn't having periods so I went to my gyno who ran all the bloodwork and found that my TSH was non-existant and my T4 was extremely high. After all the research I learned that the suppression pill is not safe to take during pregnany...we let me rephrase that...they do give it to pregnant women who are diagnosed during pregnancy but they are usually past their 1st trimester. Also, my endo will only allow a patient to be on the suppression pill for one year.

So, 9 weeks ago I had the RAI treatment. I was not given so high a dose that my entire thyroid would be killed...just a portion...but enough that I would be hypo within a few months. Basically it was described to me like this...the hyperthyroidism is killing parts of my thyroid...RAI just speeds up the process. Prior to RAI I had a large goiter...now it has shrunk to the point that I think it's gone. I have gone from being HOT all the time to fairly comfortable and my rapid heart rate (averaged around 130 resting) is now around 75-80 at rest. I am no longer loosing my hair and I'm not rushing to the bathroom all the time. Lots of other symptoms I had are now not noticable. I am starting to gain weight though which is a bummer (considering I'd lost 20 lbs) but was expected. I meet with my Endo this week and will most likely go on the thyroid replacement hormone at that time.

Although it has only been 9 weeks since the RAI, I have no complaints. I went into it with the understanding that I would most likely be hypo for the rest of my life...but my thyroid would not be totally killed. Totally killing my thyroid was not the goal.

As for my pregnancy concerns...I should be given the green light to start trying again 6 months after RAI. Also, Hyperthyroidism is much more serious on you body than hypo is so I'll just have to learn to adjust to the weight issues of hypo.

I do have concerns about Graves Eye Disease which is why I have an appointment with an opthomologist next week just to discuss my concerns. But no matter if you have RAI or not the eye disease is still a posibility.

The ultimate would be to actually treat/cure the auto-immune disease instead of eliminate the things that it attacks but I guess that's just not an option since the cause appears to be a mystery.

The decision is yours, everyone is different and ever doctor is different. If you don't trust what your Endo is saying then I HIGHLY recommend getting a second opinion from another Endo.

Good luck! And I hope all goes will with you.

Edited by: GAPEACH79 at: 5/25/2009 (16:06)
GOAL WEIGHT - 120 lbs.

4/30/09 - 139


"When we are motivated by goals that have deep meaning, by dreams that need completion, by pure love that needs expressing, then we truly live life."

-Greg Anderson





 Pounds lost: 16.2 
 
0
5.25
10.5
15.75
21
ALIEN8's Photo ALIEN8 Posts: 5
5/20/09 10:56 A

My SparkPage
Send Private Message
Reply
Hello, I have had the RAI for complete removal. Various Dr's seem to like this. A Dr. buddy of mine even called graves 'completely treatable', ie- to go on a stable dose of synthroid. Having said that, I would try a thyroid suppressing drug *first* and see if you go into remission. (I wish I could go back in time and do that myself). If not, you can always nuke your thyroid later on. I've read that the RAI may be associated with a higher risk of Graves Eye Disease (which you won't like - trust me).
On the partial removal, IMHO the problem isn't that your thyroid is 'too big', its that the graves antibodies are stimulating it too much (gas pedal to the floor). So if you carve it up or partially kill it, and later go into remission (foot off of the gas pedal) you will be somewhat hypo/low, and still have to take supplemental synthroid only now you may be chasing your levels. And your endo would have an easier time putting you on a fixed dose.
Again, I don't see a downside in trying to suppress it and see if you go into remission. Who knows, maybe most "RAI w/replacement synthroid" cases eventually go into remission (low graves antibody levels) and don't know it? (how would we?)
Anyway, good luck.

 current weight: 170.0 
 
175
168.75
162.5
156.25
150
EMS-WIFE's Photo EMS-WIFE Posts: 820
5/19/09 7:01 P

My SparkPage
Send Private Message
Reply
I like the way the radiologist thinks. Sounds like she is treating your thyroid and not taking the "quick-fix" attitude. I used to know someone who did RAI and had a great result, in that she is off all meds and her thyroid now works fine.

I also have heard it told that RAI was originally supposed to be done in stages to give normal thyroid function. Unfortunately, the norm has become one dose, which tends to kill it, then medicate for life.

There is a Grave's Disease group on facebook. You may want to post your question there as well.

Remember, it's your thyroid and your health. Don't let me, a friend, or even your endo railroad you into something you are not comfortable with.

Final thought. Is your endo a credentialed radiologist. If not, how does (s)he know what type of RAI treatment is best for you. That is between you and the radiologist.

Ultra-Mom running strong
I am endurance


Member of: Buff Boomers, Biggest Loser Fans, Geocachers for Weightloss, Spark Califonia.

Team Leader: Hyperthyroidism or Graves Disease

...tomorrow is a new day with no mistakes in it yet. ~~~ LM Montgomery, Anne of Green Gables


 current weight: 167.0 
 
167
159
151
143
135
SOPHIADARE's Photo SOPHIADARE Posts: 316
5/19/09 6:13 P

My SparkPage
Send Private Message
Reply
My endocrinologist says she would like to see my thyroid destroyed completely.

This was news to me. The doc over at nuclear med had said she had thought she could reduce the size and while she didn't think she could get it so perfectly to the right size that I wouldn't need meds, she did think she could get it close. She said she didn't think I wouldn't need much when she had finished, and though I would probably go a little bit hypo to begin with and that there would be some additional drop off hypo after a few years, and I would need meds, it wouldn't kill it.

My endo thinks that as long as any gland exists, it's there and can cause trouble.

She seemed to think that the radiologist I had been talking with was either insane or was so outrageously optimistic in her estimations that if she was right, she should be winning all kinds of awards. (Actually, I believe my endo thought I must have misunderstood.)

Has anyone had ablation and retained an even partially useful thyroid?

What about the parathyroids? I'm looking and the info I'm finding isn't very helpful. It mostly repeats my endo's advice or lists the three modes of treatment. My mom is really sick just now, so I won't be going for a second opinion (or getting RIA) soon, but I would sure like to collect opinions, and anyone who has private ideas about which docs are good and where -- well, those things would be good to know, and my email is available through sparkmail.

Thanks!





Sophia Dare


 current weight: 212.0 
 
224
221
218
215
212
Page: 1 of (1)  

Report Innappropriate Post

Other Hyperthyroidism or Graves Disease General Team Discussion Forum Posts

Topics: Last Post:
Help Wanted!! 3/31/2014 1:38:06 PM
Graves' Eye 1/4/2014 9:22:40 PM
How do you handle hyperthyroidism 4/3/2014 11:37:10 AM
GD Diet 2/4/2014 9:10:38 PM

Thread URL: http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x26179x25666593

Review our Community Guidelines