# What happens if we don't pick one?



## oceanmist (Apr 30, 2007)

Hi!
Quick question my husband is gaining weight and looking like himself. He says he feels well.....so why do we have to pick RAI or Thyroid taken out before Christmas? Can't we leave well enough alone?

Ocean


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## Andros (Aug 26, 2009)

oceanmist said:


> Hi!
> Quick question my husband is gaining weight and looking like himself. He says he feels well.....so why do we have to pick RAI or Thyroid taken out before Christmas? Can't we leave well enough alone?
> 
> Ocean


The thing is, antithyroid meds are very very hard on the liver. So, they cannot be taken forever.

The other thing is, and I have seen this a thousand times over, the patient just keeps on rebounding. They feel fine and then it comes back w/ a vengeance.

However, this decision is one that can only be made by your husband. He has the right to chose the course that he wishes to follow. That is a given. And we honor that here. It is not our place to tell people what to do.

We are here to offer support no matter what.


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## greatdanes (Sep 25, 2010)

oceanmist said:


> Hi!
> Quick question my husband is gaining weight and looking like himself. He says he feels well.....so why do we have to pick RAI or Thyroid taken out before Christmas? Can't we leave well enough alone?
> 
> Ocean


Meds will have to be taken the rest of ones life if the thyroid is removed also(synthyroid). At least with graves/hyper you can and most times achieve of remission. There are some who don't achieve remission at all, and their symptoms get worse or don't improve at all for yrs and yrs. These are prime candidates(IMHOP) that could benefit from TT or RAI. Even if one achieves remission for let's say 5-10 yrs, and then relapses and has to take ATD for another year, only go into remission again, that's not a bad outcome if you ask me. My friends aunt has been taking MMI for 25 yrs and her liver is fine. PTU is the one that's usually hard on the liver, but may be less harsh in lower dosage. If he is feeling fine, i don't see the ''rush''(it's not life threatening at this moment, or at least doesnt sound like it is to me) in havng RAI or TT. As Andros says, it's ultimately his decision, but the majority of ppl go on to experience remission, as long as 10-15 yrs.


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## GD Women (Mar 5, 2007)

Within a period of 7 yrs before I was diagnosed I lost and gained and re-lost and regained many times. Each time the weight lose was more than the previous until it came to a point that when I looked in the mirror a skeleton was looking back - no lie. With the weight loss and sisters nagging is what finally brought me to the doctors. I had no other negative symptoms, they were all great and positive - best I ever felt in my entire life. If I hadn't had thyroid treatment I know the weight loss would have continued and would have been the cause of my demise for sure. Sever weight loss affects all the bodies organs to where they start shutting down in which causes death. I have read where people have died because they refused treatment.

Why put off the enevable and risk health.

Just something to consider.

Good luck to the both of you.

P.S. the meds are no big deal - RAI is no big deal. There's worse in the world.


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## oceanmist (Apr 30, 2007)

He's not refusing treatment...he's on PTU's and is feeling great. He says he feels pressured to make a decision his doctor wants him to do RAI by Christmas. He says in his mind he doesn't want to do that ...if anything he will get his thyroid removed. He seems to be scared of his doctor...well you know men they dont go to doctors so he feels intimated. He asked me again to come with him to his appointment so I will. All I wanted to know was If he could stay on a low dose of ptu's if he's feeling well.
I understand we have to watch his liver...but at this point I don't see any rush into anything.
Thanks
Ocean


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## GD Women (Mar 5, 2007)

He probably could stay on PTU until eventually they no longer work or effect his liver. In which case if he opts for RAI it probably will be needed at a higher does due to PTU, than a normal dose if RAI was done first. However, he can opt for surgery and to disable the thyroid remnants left behind an RAI done to destroy the remaining thyroid. If he stays on PTU he would need to be monitored regular and levels checked every 4 weeks through the duration. The liver needs an diligent eye kept on it.

Good luck!


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## oceanmist (Apr 30, 2007)

Wait a minute you mean if he gets out his thyroid he still needs RAI!!!!????? The point of getting the thyroid out was not to have that crap...Seriously this is like Russian Roulette I feel like a gun is pointed to my head. I'm trying to help him cause he doesn't go on the computer. I know I know unheard of ....he hates the computer. So here I am trying to be everything to everyone today (full moon) thinking I have the best answer for him and dealing with other stuff and now there seems be be another bullet to dodge! I'm soooooooooo frustrated!! I think I'm just going to sit here and have a good cry.......................................


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## GD Women (Mar 5, 2007)

I don't believe RAI is given as an option for normal thyroid surgery in most cases.

RAI will kill off any thyroid residue left behind from surgery. Surgeon just cant get all the thyroid out because it is too close to other vital organs that could be damaged with taking the total thyroid out, so residue thyroid is left behind. This reside left behind is enough for antibodies to attack and play havoc with the thyroid. Symptoms, levels, med dose adjustments, as well the thyroid can grow completely back. There has been cases where this has happened and I think some were here posting to the effect. So RAI will do the rest of the job that surgery couldn't.

All three treatment options have their draw backs. They are not all a 100%. So we do the best we can by choosing the treatment options that best fits us and our life style. Then we move on with living life to the fullest of our ability.

This is not a big deal there are bigger ones out there. We can live life after either treatments. A happy, healthy and beautiful life.

Tell your husband to be positive, suck it up and be brave, and do what he has to do, and then move on. He doesn't want to miss out on life - I am sure you don't want to either.

Good luck to the both of you......It ain't easy but it ain't hard neither!


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## midgetmaid (Jul 22, 2010)

Hi, Oceanmist. I sent you a P.M.

Renee


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## greatdanes (Sep 25, 2010)

He could take methimazole which isn't as harsh on the liver. It actually brought my liver enzymes down as ppl with hyperthyroid can have elevated liver enzymes. The only time I've heard of having both RAI and TT done at the same time was for cancer. This is why I say research. I am not saying its never been done, just not common practice for having both procedures done, and ive never met anyone to have both, unless it was thyroid cancer. When I research I try to find commonalities and similarities, for each method I am researching and look for the common denominator. His health is stable right now and as you've just admitted to, there is no need to rush, so enjoy the holidays and maybe even seek a second opinion in the meantime.


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## kathryn00000 (Oct 23, 2010)

oceanmist said:


> Hi!
> Quick question my husband is gaining weight and looking like himself. He says he feels well.....so why do we have to pick RAI or Thyroid taken out before Christmas? Can't we leave well enough alone?
> 
> Ocean


Hello- I'm new to this board, but sadly not new to thyroid disease and the frustration caused trying to get a concrete and accurate  diagnosis and treatment plan...
I came here planning to post my "dilemma" -but instead feel the need to ask you a few questions, since I sense you are being "pushed" into a treatment that may be unnecessary or inappropriate, at this time.

*- 1st-* Have you had a second and possibly 3rd opinion from a (non-surgeon) MD experienced with thyroid disease?
*-- 2nd-* Please summarize your husband's symptoms (including B/P, pulse, neuromuscular, ophth, neuro, etc.).
*---*3rd* and Most Important -*Please summarize lab, sono and other completed test results* (I apologize in advance if you posted this elsewhere, but I could not find them)-

My advice (regarding "making a decision before Christmas") is do NOT make any treatment plan decision BEFORE you are 100% comfortable and certain the tx "recommended" is absolutely necessary- (Please keep in mind, that if your husband has become so ill, that he is just one step away from admission to a hospital, you MUST follow doctor's advice...In other words do not delay a decision if your husband's S/S (signs and symptoms) and abnormal test results indicate IMMEDIATE medical treatment is indicated...

BTW, the worst case scenario (outcome) for many thyroid patients is "cancer", which is very rare and even when biopsy confirms cancer, it has a 95% success cure rate.

In the meantime make sure your husband is eating a vitamin-rich (HEALTHY, NATURAL, NON-PROCESSED) high carbohydrate diet - 
Hyperthyoidism severly depletes vitamin/mineral reserves -
Avoid ALL packaged food (chemicals, preservatives, dyes, etc.), Opt for complex (natural) carbs found in fruits, vegetable, and breads make from whole wheat, non-refined (organic if possible) sugars and flours- Homemade shakes are an easy way to pack-in extra healthy carbs...
Many people with "endocrine" disorders also greatly benefit from vitamin/mineral supplements, (stay away from those that contain iodine for now), High B100, Magnesium (go for most absorbable types such as Mg+ stearate, Mg+ malate), and more...(will add more vitamin, herb, antioxidant suggestions later if you are interested). 
Unless contraindicated due to other medical condition, also be sure to include high fat foods- Only from the healthy fats that increase HDL, not the dreaded trans fats- Healthy Olive oil, and those high in Omega 3's can be used to cook almost anything- E.G. Homemade french fries, sweet potatoes, breaded zucchini, - garlic bread (made with fresh garlic and olive oil or healthy butters- of course, 
home made blueberry muffins or pancakes, carrot cake, spinach pie, low salt nuts (cashews, walnuts, pecans) etc. 
(All of these are some of my personal favorites, which I use to keep my weight up to my goal of at least a size 6/7)- Diet modifications go a long way in keeping weight and nutritional status up in a hyperthyroid person.
Of course (for now) cut-out all "hyper" foods E.g avoid caffeine and simple sugars, limit foods that may contain excess caffeine (e.g. chocolate and "energy drinks", etc...

Sorry for going so off-topic with "nutrition" suggestions (that help manage hyperthyroid diseases-

*I look forward to reviewing the S/S, labs, tests so I can better understand the "urgency" from your doctor and some members here, to decide on TX (thyroid removal, RAI, etc.)- *Always remind yourself that healthy foods (and vitamin supplements, when indicated) do NOT increase the profits of drug companies, surgeons and all others employed in mainstream medical field)- While "conventional" medical tx may be necessary, be educated before being pushed into any tx that has risks or may be unnecessary.

BTW, I've read 100's, maybe thousands of thyroid books/articles over past few years- both mainstream and alternative- And I'm still confused by all the conflicting information found on endocrine disorders-I also am an RN (nurse), self employed, but not in medical field. 
*I would like to recommend you read one of my favorite "thyroid" books,:*_The Complete Thyroid Book_, written by Kenneth Ain MD from Univ. of Kentucky Thyroid Clinic and Sara Rosenthal, Phd- published in 2005 ISBN: 0-07-143526-3

Also note, all surgeons like to push-up elective/non-urgent surgeries "before Christmas" for obvious reasons (time off around holidays with their families & friends).


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## Andros (Aug 26, 2009)

kathryn00000 said:


> Hello- I'm new to this board, but sadly not new to thyroid disease and the frustration caused trying to get a concrete and accurate diagnosis and treatment plan...
> I came here planning to post my "dilemma" -but instead feel the need to ask you a few questions, since I sense you are being "pushed" into a treatment that may be unnecessary or inappropriate, at this time.
> 
> *- 1st-* Have you had a second and possibly 3rd opinion from a (non-surgeon) MD experienced with thyroid disease?
> ...


Excellent, excellent post. Thank you and welcome to the board. You clearly fit right in!!


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## lavender (Jul 13, 2010)

I took a quick glance at your other posts, and from what I read, your husband is diagnosed with Graves, and has no nodules or other signs of cancer...Correct me if I am wrong. 
If cancer is not a concern, he is doing well on anti-thyroid meds, and his liver is handling the meds well, what is the rush? He may decide that the meds are not a good long term solution in time, but even then he has a choice between RAI and surgery. 
I have never heard of following surgery with RAI for Graves disease. My understanding is that this is only done with cancer, which can be definitively ruled out by a pathologist once the thyroid is removed. 
I had my thyroid removed for Graves, with no RAI. I had no nodules, and my docs were never concerned about cancer, and the pathology report confirmed that I had a really good case of Graves.
Surgery was a pretty drastic measure, and it had to be my choice. If I had felt half way decent on anti-thyroid meds, I would have preferred to stay on them to see if there was a possibility for remission. 
Don't let the docs push your husband into any treatment he's not ready for. If this doc will not support your husband's choice, it may be time to seek out someone who will. My endo said that he would have not chosen surgery for himself, but he was willing to support my decision. Docs may know a lot, but they don't have to live in our bodies.

I am attaching a link to the National graves Disease Foundation website. There is a link to an article about methimazole and PTU on the left if you scroll down.
http://www.ngdf.org/


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## kathryn00000 (Oct 23, 2010)

In my last post I suggested reading one of my favorite (conventional medicine) thyroid books,_ The Complete Thyroid Book_, written by Kenneth Ain MD from Univ. of Kentucky Thyroid Clinic and Sara Rosenthal, Phd- published in 2005 ISBN: 0-07-143526-3

*"The Complete Thyroid Book" *has detailed medical information for correct diagnosis, treatment -which is clearly explained for most people (medical or non-medical)-

If you're looking for even more in-depth information, written by physicians I would recommend research at:
*http://www.thyroidmanager.org*Takes times to locate correct chapter, but then you can download complete chapter in PDF format-
E.G. In Chapter 10 you will find very detailed medical information on:
"Graves' Disease and the Manifestations of Thyrotoxicosis"

Hope this is helpful-

When I feel better and have time I hope to post all the useful resources I have found- (Both basic -easy to read/understand---> to more complex-)
----------------------------

BTW, after almost 3 years of progressive/worsening (endocrine) illness I'm still searching for a doctor who even understands the basics- My "type" of (secondary) thyroid disease may be a little more complex - but it is both shocking and frustrating to us all, that so many doctors are clueless about the endocrine glands (thyroid, pituitary, hypothalmus, adrenal...), which affect almost every function of our bodies...
During the same week I've has 1 doctor tell me I'm hyPERthyroid and need to be put on methamiazole (used for Hyper-T) and another doctor say you need thyroid meds (used for Hypo-T- and she wrote script for Levothyroxine)!
Similarly, all my doctors (Endo, IM, Rhem, Radiologist and others) disagree on the urgency of need for biopsy- one thinks my symptoms and abnormal test results are _probably_ due to thyroid cancer, other(s) state unlikely cancer- and biopsy not needed at this time...
Also, the type of health insurance (and/or lack of) has a direct impact on treatment recommendations you will receive-This past year I have health insurance, and the almost exact same test results have been interpreted and treated VERY differently than last year when I did not have insurance and was self-pay...


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## Andros (Aug 26, 2009)

kathryn00000 said:


> In my last post I suggested reading one of my favorite (conventional medicine) thyroid books,_ The Complete Thyroid Book_, written by Kenneth Ain MD from Univ. of Kentucky Thyroid Clinic and Sara Rosenthal, Phd- published in 2005 ISBN: 0-07-143526-3
> 
> *"The Complete Thyroid Book" *has detailed medical information for correct diagnosis, treatment -which is clearly explained for most people (medical or non-medical)-
> 
> ...


Do you have a pituitary adenoma? You say your TD is secondary. I was wondering what the primary is.

I love Thyroid Manager. I don't pretend to understand eveything I read there but it is a very very credible site.

Cancer should "always" be ruled out. Especially when the basic thyroid panel (TSH, FT3 and FT4) comes back weird. Observation is also part of the educationaly process. I think you should have a radioactive uptake scan and also FNA if indicated by the results of that scan.

Just because you have secondary TD does not mean that ordinary procedures should not be followed not to mention the fact that what was true yesterday is not necessarily true today.

Once again, welcome


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## oceanmist (Apr 30, 2007)

Thanks for your posts I've learnt alot...again were not going to rush taking the ptu's propranolol hydrochloride 20 mg three times a day until his ready. 
One thing about my husband is he is a strong man always has been and I know if anything thats what is bothering him, but he doesn't complain. He never askes about his disease trusting what ever the doc tells him without looking into it. I'm trying to make sure he makes the right decision.
Thats his problem he does sucks it up so well infact that I didn't know he was sick. I watched him fade in weeks losing 30 lbs, breathing like he just ran and was sleeping, shaking so bad as he worked around the house, but he never stopped. So weak that when he was helping move a friends stove he couldn't, and was to weak to get up. He freaked us all out we had no idea and neither did he. But he sucked it up and moved on.
I on the other hand know the reality of the ins and outs to some of these decisions that he needs to make. Reading some of the posts on here can scare the hell out of anyone who is staring this disease in the face. I don't have other family other than my husband so he is very important to me. So if anyone needs to suck it up its me I just want to make sure we make the right decision so I get my huband back. No we don't want to miss out on life so that is the pressure of making the right decision and we don't even know what were dealing with really do we?

I'm not sure what the drug does that he is on but I will ask for a milder one. Thanks


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## oceanmist (Apr 30, 2007)

oh gosh I only read the first page I didn't know there were more posting. I have to go to work will read them when I get home tonight.

Thanks everyone!!!!!!!!!!!!!


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## Andros (Aug 26, 2009)

oceanmist said:


> Wait a minute you mean if he gets out his thyroid he still needs RAI!!!!????? The point of getting the thyroid out was not to have that crap...Seriously this is like Russian Roulette I feel like a gun is pointed to my head. I'm trying to help him cause he doesn't go on the computer. I know I know unheard of ....he hates the computer. So here I am trying to be everything to everyone today (full moon) thinking I have the best answer for him and dealing with other stuff and now there seems be be another bullet to dodge! I'm soooooooooo frustrated!! I think I'm just going to sit here and have a good cry.......................................


If your husband does not have cancer, no RAI will be necessary. He can just have the surgery if he choses to do so.


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## oceanmist (Apr 30, 2007)

Very helpful comments, advice and information...Thanks to you all! I'm going to do some research on thyroidmanager. We will get through this and I'll let you know which fork in the road he decides to take....but we are not rushing.
GIVING EVERYONE OF YOU A BIG HUG FOR BEING SO UNDERSTANDING...Ocean


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## kathryn00000 (Oct 23, 2010)

Andros said:


> Do you have a pituitary adenoma? You say your TD is secondary. I was wondering what the primary is.
> 
> I love Thyroid Manager. I don't pretend to understand eveything I read there but it is a very very credible site.
> 
> ...


Hello- I 'm still not sure what "primary" cause is-> MRI summer '09, showed *pituitary cysts*, "further follow-up and testing recommended..."

It was 2+ years ago, when I was first diagnosed with TD- FP Doctor called it *"Hashimotos automimmune HyPOthyroidism" *+ Adrenal Fatigue"- She put me on Armour and Cortef.

At that time *my TPO was 3000+ (normal=<60), TSH VERY LOW, and T4 VERY LOW. *- - 
Second Doctor I saw that same month was IM specialty (March 2008) *she said the opposite, that I was "secondary HyPERthyroid" and wanted to put me on Methimazole"...

Over next 2 years TSH remained very low, and T4, fT4 & T3 low to low normal range, T3 uptake High-norm, T-7 low norm. 
I was kept on Levothyroxine despite my TSH dropping to less than < 0.005* by January 2010- FT4's did rise a bit (On Levo)-

I progressively became sicker and when seen in ER January 2010 for tachycardia, severe HTN (on multiple B/P meds), severe insomnia, etc. The Endo Doctors at University Hospital (SUNY) said I am *Hyperthyroid and THYROTOXIC *-not hypothyroid, and of course finally and *appropriately discontinued levothyroxine*, started beta blockers...
Next 2 mos (Feb-April 2010) Dx per SUNY endo doctors- "subclinical HyPERthyroidism"- (Off thyroid meds)-TSH improved from <0.005 to 0.04 (still very low).

They mentioned a biopsy should be done, but said it was non-urgent...They stopped taking my insurance plan 4/2010.
-----
Neck CT scan done 9/30/10=* "...Multiple hyperdense masses seen in both (thyroid) lobes, largest measuring 2.6 cm"..."There is a 1.5 nodular mass postier to the left lobe of the thyroid, likely an abnormal lymph node, although a metastatic lesion could have a similar appearance..."*

(3) Sonos done over past year show MNG (Multinodular Goiter), ranging in size from less than 1 cm up to 1.5 cm. (CT scan differs and says 2.6 cm)- 
E.G. ill defined solid, heterogeneous collections...ill defined regions of nodularity, hypoechoic nodules...enlarged thyroid...

I've also had swollen lymph and/or salivary glands, extreme thirst ATC*, worsening gum/dental problems - (negative lab test for Sjorgens syndrome). New, severe muscle stiffness & pain -Rheum doc says "likely due to thyroid problems but may be fibromyalgia..."

I pretty much feel like I have the flu all the time (recent weeks to few months)-

ENT doc who ordered neck CT scan recommends biopsy- but said he did not want to do it since "too complicated" and he referred me to another doctor (ENT surgeon) who despite being on my health insurance plan list of providers, referred me to their hospital clinic...
Current Endo doc says _he _does not do biopsies and _would not _assist me in finding somewhere to have done (He told me to call my insurance company for help).

Above results and symptoms certainly suspicious enough that both biopsy and more detailed testing needs to be done.

My greatest obstacle seems to be finding competent, knowledgeable, experienced doctors willing to accept my (crummy) insurance plan. I'll let you know if and when I find someone to do the biopsy.
-- All suggestions and/or recommendations greatly appreciated- Thanks!


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## Andros (Aug 26, 2009)

kathryn00000 said:


> Hello- I 'm still not sure what "primary" cause is-> MRI summer '09, showed *pituitary cysts*, "further follow-up and testing recommended..."
> 
> It was 2+ years ago, when I was first diagnosed with TD- FP Doctor called it *"Hashimotos automimmune HyPOthyroidism" *+ Adrenal Fatigue"- She put me on Armour and Cortef.
> 
> ...


Oh, good grief. I am so so sorry for all of this. Yes; you need a good doctor and one who cares about you and getting you the proper medical intervention.

TSI (thyroid stimulating immunoglobulin) would have settled the hypo/hyper dilemma. You should and none, zilch, zero and if you do, that is indicative of hyperthyroid.

Please scroll down to TSI
http://graves.medshelf.org/Lab_Tests

Really high titers of TPO (antimicrosomal antibodies) can be "suggestive" of cancer.
http://www.nlm.nih.gov/medlineplus/ency/article/003556.htm

I also don't like it that the lymphs are swollen. Which ones; side of the neck, clavical..............????

Your thyroid appears to be very unhealthy. Would you consider ablation if you could get a doctor to agree that that may be the best course?

Looks like you have run up against not only some nasty doctors but that your insurance is also in control. This is so not good.


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## Andros (Aug 26, 2009)

kathryn00000 said:


> Hello- I 'm still not sure what "primary" cause is-> MRI summer '09, showed *pituitary cysts*, "further follow-up and testing recommended..."
> 
> It was 2+ years ago, when I was first diagnosed with TD- FP Doctor called it *"Hashimotos automimmune HyPOthyroidism" *+ Adrenal Fatigue"- She put me on Armour and Cortef.
> 
> ...


I think you really need to get a biopsy; I really do. I am sorry you are being treated this way. Unfortunately your story is all too familiar to many of us.


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