Thyroid Disorders Community
Top Reasons NOT TO HAVE RAI DONE plz any1 are any of these reasons vali...
About This Community:

This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, parathyroid, pituitary gland, thyroiditis, and thyroid Stimulating Hormone (TSH).

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Top Reasons NOT TO HAVE RAI DONE plz any1 are any of these reasons valid Help!!!

If you're looking for reasons to avoid RAI, you might be interested in
this file, sent to me through this group shortly after I joined (a few
years ago):
-------
Top Reasons Not To Have RAI

1. It's permanent; once you swallow this there is no changing your mind
and starting over.

2. Since the science is inexact and dosage a guess at best, it may take
years to be fully effective, or it may have to be repeated (1)

3. Can bring on (induce or cause) thyroid storm as the dying gland
"dumps" (releases) excess thyroid hormone and thyroid antibodies into
the body; RAI also stimulates immune cells within the thyroid gland to
produce more thyroid antibodies. (2)

4. Graves disease is an auto-immune disease, not a disease of the
thyroid, so killing the thyroid doesn't stop the disease process;
without adequate thyroid tissue, the antibodies that cause
hyperthyroidism may go on to affect orbital or dermal tissue, causing
Graves' ophthalmopathy and pretibial myxedema.

5. Results in hypothyroidism.

Whoever said hypothyroidism is easy to treat, was mistaken. Because of
the effects of thyroid antibodies, radiation-induced hypothyroidism is
more difficult to treat than naturally occurring hypothyroidism.
Hypothyroidism caused by treatment for hyperthyroidism is known to cause
depression and anxiety. In one large Dutch study, "over one third of
patients with a full-time job were unable to resume the same work after
treatment. It appears that many of these patients are in need of
psychological support (3)

6. Being hypothyroid is neither less debilitating nor less dangerous
than hyperthyroid. With hypothyroidism one is at risk of myxedema coma
which can be more deadly than thyroid storm. This results from improper
monitoring and labs tests, keeping us in a hypO state. After
radiation-induced hypothyroidism develops, it takes only 6 weeks without
thyroid replacement hormone for patients to fall into myxedema coma.

7. Increased antibody titers after RAI skew lab test results, adding to
treatment difficulties. In particular, the widely-used TSH test is
influenced by TSH receptor antibodies, causing falsely decreased levels.

8. RAI, aka spent nuclear fuel ("nuclear waste", in other words) is
absorbed by other organs and can cause cell death or DNA mutations. RAI
is absorbed, in smaller amounts, by other organs besides the thyroid,
including breast tissue, the genitals, pancreas, and the gastric mucosa.

9. For up to 4-8 weeks after dosage, we're exposing those around us to
radioiodine. This is demonstrated by patients registering measurable
radioidine in airport and other screening devices.

10. Studies show an increase in cancers, especially of the thyroid gland
and small bowel, after RAI. (4)

11. Possibility of damaging the parathyroid, causing hypoparathyroidism.
(5)

12. RAI can cause difficulty with future attempts to become pregnant and
carry pregnancies to term. RAI is known to affect the ovaries, which is
why patients are recommended to avoid becoming pregnany for at least 6
months after RAI. The 6 months recommendation was increased to at least
one year in early 2002

13. Chance of thyroid eye disease developing increases dramatically, as
RAI doesn't stop antibody production (6)

14. Chance of significant, unhealthy weight gain is increased Studies
show that weight gain is inevitable after radioiodine- induced
hypothyroidism (7)

15. Replacement hormone products currently on the market, both synthetic
and glandular, are not comparable to our own hormone, and in some
people, never feel "right".

16. Ongoing problems as the gland gradually dies, necessitating close
medical surveillance and replacement hormone dosage adjustments which
usually does not happen unless a patient is educated and proactive in
their disease and treatment. Within one year after RAI, most patients
are on a dose of replacement hormone equivalent to 0.1mg levothyroxine;
5-6 years post RAI, most patients are on 0.175 mg levothyroxine because
of the progression to autoimmune thyroid failure.

17. Increased risk of developing fibromyalgia like symptoms

18. For most GD patients, medication with ATD's creates a euthyroid
state similar to "normal life", and can lead to long-term remission as
well. (8)

19. As modern science explores the human genome, a cure for GD could be
found, but after RAI kills the thyroid, it wouldn't work. Current
research is directed at modulating the cytokines, immune system
chemicals released during the immune response and necessary for
autoantibody production. Treatments of this nature are already being
used successfully in Crohn's disease.

20. I131 is so dangerous it's transported in a lead container and kept
at the hospital only for the briefest time before being dispensed by a
doctor shielded in lead from head to toe.

21. When cats are given I-131, they must be kept in a contained facility
for up to 6 weeks until they no longer set off warnings on a geiger
counter, yet people, especially in the U.S.A. are released with in
minutes of treatment on an unsuspecting population. Germany keeps I-131
patients for several days in a contained radiation facility until their
radioactive numbers are in a *safe* level. Is there REALLY anything
*safe* about ingesting I-131? (9)

22. Salivary and tear duct damage from I-131 (10)

Related Discussions
42 Comments Post a Comment
Blank
Avatar_n_tn
I couldn't fit all of the citations of the post above giving credit where its due

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~

(1) Radioiodine Therapy of Graves Disease; Milton D. Gross, John E.
Freitas, James C. Sisson and B. Shapiro, Chapter 11, Page 160 "Despite a
clinical experience now amounting to many hundreds of thousands of
patients treated with 131 I for GD, there is still no unanimity as to
the selection of the appropriate dose of 131 I."

(2) Graves Disease, Pathogenesis and Treatment, edited by Basil
Rappoport and Sandra M. McLachlan, published by Kluwer Academic
Publishers. ISBN 0-7923-7790- 7. Chapter 11, RAI Therapy of GD,
Complications and Risks of RAI, pg. 162 (Acute radiation thyroiditis;
Exacerbations of thyrotoxicosis (transient)) ; pg. 164 (thyroid storm)

(3) Werner and Ingbar's The Thyroid A Fundamental and Clinical Text,
Eighth Edition, page 703: "Hypothyroidism may be considered an
inevitable consequence of RAI therapy, rather than a side effect" This
section goes on to state that Hypothyroidism may develop in as many as
90% of patients within the first year after therapy (Ref 243 Cunnien AJ,
Hay ID, Gorman CA et al. Radioiodine induced hypothyroidism in Graves'
disease: factors associated with the increasing incidence. J Nucl Med
1982; 23:978), with a continuing rate of 2% to 3% per year thereafter.

Also:

Graves Disease, Pathogenesis and Treatment, edited by Basil Rappoport
and Sandra M. McLachlan, published by Kluwer Academic Publishers. ISBN
0-7923-7790- 7. Chapter 11, RAI Therapy of GD, Complications and Risks of
RAI, pg. 164, "Eventual hypothyroidism is an expected consequence of
131I treatment for many patients with Graves' disease and can occur
within a few weeks, months, or years after treatment. Since permenant
hypothyroidism eventually occurrs in 5-20% of patients with ATDs, 131 I
appears to exaggerate the natural history of GD"."(REF Cooper DS. 1998
Antithyroid drugs for treatment of hyperthyroidism. Endocrinal Metab
Clin North Amer. 27: 225-248).

(4) Werner and Ingbar's The Thyroid A Fundamental and Clinical Text,
Eighth Edition, page 703: "One report from the Co-operative
Thyrotoxicosis follow up study, with a mean length of 21 years, did find
an excess risk of death from thyroid carcinoma in patients receiving RAI
for hyperthyroidism due to toxic multinodular goiter (262 Ron E, Doody
MM, Becker DV, et al. Cancer mortality following treatment for adult
hyperthyroidism. JAMA 1998: 280; 347)., Page 704, Exposure of the rest
of the body to RAI 131-I: "The whole body is exposed to radiation after
RAI therapy with gonadal radiation of particular concern because of
gamma irradiation from RAI in urinary bladder"



any comments are purely welcomed.....

thanks
Blank
213044_tn?1236531060
I'll probably read all that later, but I don't want to.
Blank
Avatar_f_tn
It seems most of the citations and indeed the reasons are for people with graves, there are those of us having RAI for cancer as well. What else would you have us do?
Blank
213044_tn?1236531060
I knew I shouldn't have read it.

*sigh*
Blank
Avatar_n_tn
I apologize for the tone my post has taken on  and I swera I wasn't trying to disuade anyone with serious thyroid conditions not to have their RAI done. But my mild graves is being force onto me with RAI and I am making sure or trying to figure out the validity of these top reasons for not having RAI done with folks in my predicament.

Been playing find a humane endo that treats patients with ATD's instead RAI musical chairs, its very terrifying for me, that's all. I again apologize for any trouble I may have inadvertantly caused here, just trying to get my facts straight.
Blank
158939_tn?1274918797
Health, like many things in life, is often a choice of the "lesser of two evils".  For me and my thyroid cancer recurrence, RAI could have meant the difference between life and death for me.  For someone with Graves it may be a different situation.

Yeah, I've had some effects from RAI but I've had worse ones from going off my hormone replacement therapy.  

I'm not a fan of RAI but it sure beat having the cancer metastasis.

I would encourage ANYONE facing the possibility of surgery or RAI to research it all very carefully then make a very educated decision with the support of family, friends, and health care providers.  No decision comes without costs but being well educated helps.  Personally I am not an advocate of FNAs but others wouldn't consider thyroid surgery without having one first.  Everyone needs to make the best decisions for themselves.  We're just here to support them.
Blank
Avatar_f_tn
how instinctive and igrant.

having had rai I take offense.  I just about know the group you are referring to.    just a bunch of anti-raiers making up things.  I don't believe the reference you are referring, to give the urls to each and every reference stating to what they claim.  hog wash.  they are not referring to rai for graves or cancer I am sure.  the referring to rai a-bomb doses.  graves' is no more than a day out in the sun or one dental x-ray.

you should be ashamed of yourself for posting such a list on a sight with patients who need and rely on rai to keep their healthy condition at bay.  I think you have quite a nerve.  I have rebuttals to each and every one but i won't waist my time and breath on such non-sense.  people themselves can google for all the information.

hog wash

you can appoligize but the damage is done.
Blank
Avatar_f_tn
how instinctive and ignorant
Blank
Avatar_n_tn
Wow I get that your angry but having been diagnosis with Graves myself and I am not trying to defend this poster's post in any way shape or form but he/she kinda help me make an informed decision that I was wavering on choosing to make anyway which is taking the ATD route to treat my Graves.
And I think the title of their post read as "plz any1 are any of these reasons valid Help", I saw the word Help being used. I am guessing they are trying to sort out in their mind how to approach RAI themselves not everyone is as brave to go head first into RAI no matter how much one googles & tries to educate themselves on this form of treatment. I had numerous endo's practically bully me into having RAI uptake scan done and RAI treatment b4 allowing me to try the ATD route talk about ignorant & dismissive on the endo's part. I realize endo's are human but sometimes they know as much as their training takes them. I'm not sure about the thyroid cancer patients and I also woldn't deter them form RAI if it helps them I am all for it but what's easy as RAI for you may be a tough pill to swallow for them.
I hope you won't get livid with me when I will say folks close to me had RAI done and to be quite honest for their situations it didn't curb any more problems or symtoms (symptoms) it pretty much exacerbated them even further by making them hypo to which they are now not doing so well on Synthroid no matter how high or low their dosages.

RAI for my situation I feel as though is like gambling there's a 50/50 chance that it might take and if not you may even have to endure another bout of RAI again in the future and that doesn't sit so well for me for my own situation I am saying.



Blank
Avatar_f_tn
you are right,  i have seen this bull, the same bull for 11 years. been blasted  such bull/ anti-rai'ers

i did not read help in her 1st two post, all i see is a list full of bull.

i have all the rebuttles, if you will, at other site and i am not up to doing them here.

most things in life is 50/50 and  atd treatment is even less than 50/50

I am not against people making different treatment choices.  however, I do mind wrong info or slamming some one else's choice.

you have been to the wrong place if you do not know others who have benefited from rai. rai saved my life and i am sure i'd be dead by now if it weren't for rai.  then most don't realize that rai is treatment for the hyper side of graves', not for graves' itself, which has its own symptoms.  graves' is not curable or treatable - once graves' always graves', until science come up with better.

Blank
Avatar_f_tn
thank you for your post - if I were Graves or Cancer for sure I would try anything but my situation is different so it just gives me more to read examine etc - I do travel my own path - I am Hashitoxmosis so of course I have choices Graves and Cancer patients don't have they are fighting for their life - I'm seeking balance so I'm nothing in comparison - this info is more for someone like me who has choices so thank you - and I wont be upset with you - I'm always grateful for more info.
Blank
97628_tn?1204465633
Not all the info on the Internet is valid. It is best to avoid people with an agenda. Anyone can type anything from any *slant*. One has to read things with a discrimminating eye.
Yes, some people go hypo after RAI treatment, but virtually nobody goes into a coma. That is not a reasonable consideration for not having RAI.
Yes, people often gain weight after having RAI . That's largely because they lost weight inappropriately when they were hyper. Studies show that people weigh 170 pounds on avergae when they develop Graves, then they lose weight due to the disease, and when they get back to normal and go on replacment and are stable they weigh, on avergae 168 pounds. If a person  wants to weigh less they need to change their eating and exercise habits from what they were when they were hyperthyroid and not entirely blame the RAI.
It is important to start replacement therapy right after having the RAI and not waiting until you get really hypo. This, studies show, has been shown to help a bit.
Blank
Avatar_n_tn
Hyper or hypo both are not a good place to be energy or metabolistically wise. I agree when one has Graves its graves for life and its not easy. But in my circle of friends I know folks who have had RAI uptake scan done 3 of them ended up with eye disease (I wish I were lying but I'm not) and then my 2 relatives the endo's waited after their RAI till they weren't able to function type of hypo stance and no amount of hormone replacement therapy, Armour, or even Synthroid has help them get back to their feet one lost her job and blames the hospital and endo for forcing RAI on her. Now to be honest everyone's situation is different but these actual real live cases has taught me to allow ATD's to be my friend for a little while and if it causes some side effects, then I have to deal. RAI caused these great folks risks, so what's to say that ATD's won't help me out for alittle while. I am just trying find an endo who can tell me the difference between Methimazole and Tapazole and won't force a RAI uptake scan and which one could benefit me in helping me reach remission faster. I was even told by a these folks that if I amnot going to choose RAI as my method of treating RAI there's no point in having RAI uptake scan done and I have to say I agree, again for my situation.

The lovely author who wrote "Living Well With Graves Disease"  by Mary Shomon even pointed out that a Thyroid Color Doppler Sonography would be possibly a better alternative for my case than having RAI uptake scan done but knowing the endocrine clinic at the hospital that I will end up going to the endo's there are mostly surgeons and they are gonna persuade me to have RAI uptake scan and mention that no matter how small the dosades of iodine there is in a scan it won't hurt you or a small fluffy bunny rabbit, Ok no problem for them to say that but I don't feel that way. These decisions matter to  the person going through the process, not  who can promises me the moon and stars and fall short on being able to deliver them. I don't blame anyone but the person making the decision themselves, its up to them to make informed choices with as much info as possible.
Blank
213044_tn?1236531060
That is a long list of ugly possibilties. It would be nice to be able to seperate the truth from the fiction. I think this thread may be a good place to do so.

I am looking at full on, multiple warhead ICBM style RAI. I am the one in a few who will have a total gland eradication via RAI, and I need to hear the bad stuff as well as the benefits.

I understand GravesLady's perspective, and am glad she points out that most people do not need a huge dose and most people benefit from the treatment without serious lasting problems.

I also need to hear from people like Gilda. I need to weigh the good and the bad now. I don't want to develop TED next year and then think "if I had only known..."
Blank
Avatar_n_tn
this is my 1st time to post-blog?? i tried to post yesterday to cyndy but lost it out there somewhere -LOL. there seems 2 B alot of feedback on this particular question.
I just discovered a few wks ago that I am very hypothyroid- (in a 6 WEEK period I went from a TSH 1:96 sensitive, to 42:25s, and had the test redone 2 weeks later at the same lab, to test out at 53:45s) whatever sensitive means!!! I am now on thyroxin for the 18th day..

  I have an overwhelming number of questions and fears. Your posting was helpful in my case, because it provided me with info., even tho' it was intended for a person with hyper-rthyroid.

1. What i have learned and deduced is this: most medical information is scary because it concerns changes that are happining  to our bodies,usually unexpected and unwanted.

2. Almost all medical proceedures concern changes that will happen to our bodies, usually unexpected, unwanted, and most always have side affects that the medical community does not tell us about -especially the long term effects-(more on that later)

3.In most case studies and publications, the side and after effects have to be cited, because stuff happens- we are all different metabolically and therefore our bodies react in different ways. Very simply put, from a laypersons perspective- THESE PUBLICATIONS ARE SUPPOSED TO KEEP OUR DR'S. INFORMED, so that we can be informed and hopefully make better informed choices,decisions.  

4. What it all boils down to is options. The more the better. In case of an emcy.situation and a decision has to be made right away, hopefully the choice we make, or our family, or physician, has the best results with the least negative impact for all concerned, now and in the future.
Blank
Avatar_n_tn
Blank
200220_tn?1361955154
I had the RAI in January 2006.  I was fine after the treatment with not medications given.  In Sept. 2006 I started feeling bad and went to a MD Holistic doctor that gave me a lot of tests and found that I had lots of food allergies and high cholesterol.  He also found that my thyroid tsh was 980 and I was hypothyroid.  Thisi is the fuzzy part.  I don't remember if I called the endo at that time or was waiting for my checkup on Jan. 2007.   All I know is in March 2007 I awoke in the middle of the night with anxiety that took me to the hospital and then it was hypo hell until now.  I am doing ok - not straightened totally out but progressing.  I also have trouble with my eyes.  I am under treatment of an optho.  If I had known any of these things listed above would have occured, I WOULD NOT have had the RAI.  I would have sought alternative treatment.  Now that I have had it and received all the benefits of it (sarcasm) what do I do.  It never made sense to me that it would affect other parts of my body as it was in me.  I am not sure of the doseage they gove me.  I fully trusted my doctors and went right along with their advice.  I intend to ask them about these statements.  Anybody out there know what to do now after the fact?   Linda
Blank
213044_tn?1236531060
One thing I have learned is you need to have thyroid tests run every three months, period.

If your Endo or PCP would have been checking you every three months your rising TSH would have been caught much sooner. Way, way back when I thought I had simple hypothyroidism, my PCP would not renew my perscription for the fourth month till I had bloodwork done. That is a good policy, I think.

Sorry you regret your treatment decision.
Hope you find a way to lower your TSH soon.
Blank
200220_tn?1361955154
I am quick to say that I would not have had the RAI when in actuality I was only listening to my doctor and trusting him as he was highly recommended by my former endo that is not longer in private practice and actually was the one that gave me the iodine.  After reading all of this post and recognizing that I had most of what they said would happen, happen,  that's what made me say that I wouldn't have it again.  My endo is checking me in two months as I am still trying to get my tsh down.  I am seeing that he is correct in what he is doing for me, its just that I don't know what I am doing and of course want it to progress faster.  When you are not feeling good you don't make great decisions.  I know that my heavenly Father is in on this too and am comforted by this and at peace.
Thank you for your input.  I will keep that in mind as this progresses and ask to be tested every 3 months at the proper time.   Linda
Blank
176557_tn?1222893911
You ask if RAI can increase the likelihood of developing or worsening Graves Eye Disease.  I was diagnosed with Graves a little over 2 years ago and have Graves Eye Disease for a little longer than that (even though I didn't know what it was at the time).  I was given the choice of ATD, RAI or thyroidectomy shortly after diagnosis.  For various reasons, I chose the drug route (mostly because I was moving to a different city, had other health concerns at the time and was a little overwhelmed by the whole thyroid emotional fun to make a permanent decision).  After year on anti thyroid drugs, I was told I would have to choose RAI or Thyroidectomy as it wasn't a good idea to stay on ATD long term, especially since it was evident they weren't going to get me into remission.   My (new) endo wasn't crazy about the RAI for me because he said there was some evidence that it makes Graves Eye disease worse.  He said he'd hate to recommend it because it couldn't be "taken back".  I had already been leaning towards thyroidectomy, so his opinion just about sealed the deal.  Evidently, if the connection between RAI and worsening Graves Eye Disease was real enough to make my endo leery of it in my case, I would guess there is something to it, even though it hasn't been medically proven to my knowledge.

Good luck to you in your search for a doctor you can work with!
Blank
Avatar_m_tn
For thyroid cancer patients, there isn't much choice with this RAI, especially if their nodules are bigger  than 1cm. It is the only way to go and be done with the cancer..
Blank
Avatar_f_tn
I responded really emotionally to this post initially as I am less than two weeks post RAI and am still on precautions in regards to my kids, so I'm a little touchy. Truthfully,my cancer was fairly extensive. The doctors found cancer in tissue under my jaw all the way down to the aortic arch. I believe RAI was the best option, and really I'm grateful that there is such a standardized treatment that has been used for such a long time to effectively treat this disease. My former mother in law was recently dx with ovarian cancer and is getting ready to undergo chemo which they tell her at this point has a 5-12 year survival rate. Now everyone is keeping in mind that they will come up with more ways to fight cancer in 5 years but I haven't had anyone put a number on the years I have left yet. For that I am profoundly grateful.

I will say this though. Some of the risks mentioned in the original post, I WAS told about and elected to undergo this procedure. I see a lot of people on this forum are being given their RAI from an endo, whether they are getting it for cancer or graves or some other reason. I'm being treated by a radiation oncologist. I felt like I was really well informed as to the risks and the precautions I have to take. They had me sit down with two nuclear physicists before RAI to go over all of these things. I haven't hugged my kids in 12 days because they had me come in and checked me with the geiger counter after the first week and told me that I was emitting enough radiation as to be dangerous to them. Hopefully when they recheck me this week they will lift those restricitions. So I feel really well informed and watched out for.
I can't speak to being treated with RAI for graves but I do think that getting RAI was the best option for me.

Oops I just saw the other post on this same topic so I'll copy this over there.
Blank
11852_tn?1216845043
My papca nodule was just under 1 cm.  I told my endo from the beginnning that what was wrong with my thryroid that I wanted an agressive treatment.  So I opted for the RAI with my dose at 100. I don't regret for a minute doing RAI.  Was it a pain to be hypo for a month....OH YEAH!  Would I do it again because it helps stop thyca recurrence....Double He// YES!!!!!
Blank
Avatar_n_tn
I see that you chose the ATD route and I'm wondering did your endo say that the ATD treatment was taking or did you feel it wasn't taking after a 1 year because I've read that ATD should be given at least 3 to 5 years to see some kind of dent in balancing or managing Graves to the point of remission, this also depends on the case. I spoke to my aunt's girlfriend, she's graves and to be honest she told me that RAI is a very permanent procedure that can't be taken back and she also added she's been on Methimazole for 17 years she's 48, she even showed me her blood results and it was a rollercoaster of remission, in and out of it. She never ever had one RAI uptake scan done and she mentioned that there were other ultrasound/sonogram machines that can help the endo with what they were dealing with down there. She said that her 2 small nodules weren't bothering her why should it bother her endo and I could really see her point. I laughed & cried and she said DO NOT under any circumstances allow the endos to sway you on "YOUR" decision of ATD route.
Since that time I've spoken to other folks with varying cases of Graves who are happy on the ATD route and IMO in my case I am sold to becoming a part of the ATD club.

Thyroidectomy is something I am also mulling over but wondering if the endo is going to see me as a candidate for it, whoever I end up with that is? (in transition looking for new endo that won't treat me like a desensitized statistic IMO).


Quote:
"My (new) endo wasn't crazy about the RAI for me because he said there was some evidence that it makes Graves Eye disease worse.  He said he'd hate to recommend it because it couldn't be "taken back".  I had already been leaning towards thyroidectomy, so his opinion just about sealed the deal.  Evidently, if the connection between RAI and worsening Graves Eye Disease was real enough to make my endo leery of it in my case, I would guess there is something to it, even though it hasn't been medically proven to my knowledge."

See I like that you said what you said up there cause you opened up a new door on approaching RAI viewpoint and how your endo of all people was leery about too (never heard of an endo being leery of anything, there's a first for everything).

Thank you for your post and the fresh insight, I appreciate it tm514.


Blank
213044_tn?1236531060
I've been reading and hearing that you should not take Methimazole for more than 12-18 months because it is hard on the Liver.

Seventeen years of being on a rollercoaster does not sound like the treatment I want. Liver failure is something I sure don't want.

Deciding between the two courses of treatment sounds like gambling in Vegas, without the free booze.

It would be nice to see the other guy's cards.
Blank
Avatar_n_tn
I agree with you and have also read that tidbit about Methimazole and I agree with my aunt's girlfriend she showed me "her cards" so to speak in various forms of blood reports and doctor's diagnosis reports, she's is meticulous with her helath and she doesn't fool around. She told me that there is a blood test one can do to gauge the function and the white or was it red blood cell countof one's liver and hers came out beautifully. She didn't mention she  was on Methimazole for 17 years straight every single day of her life, she mention that when she hit remission she was off it and when she was not feeling so great she went to her endo and GP and she was back on it. She told me it depends on the MD's that will allow you the freedom to test yourself with ATD's and such also.

I will be following suit with ATD's also but I will be incorporating other treatments like Reiki and a bit of alternative medicine & diet. Most balk at me when I say alternative medicine but sometimes conventional medicine brings a person to one bridge, where alternative medicine brings about a few more additional options, some good some not so good. I am willing to try.

Having been diagnosis with this Graves few months ago I am still trying to come to terms with my health issue, I feel that my issue is nothing compare to a patient who needs and deserves more help than me. I as a person have a tendency to keep quiet and not rock the boat with my problems and my family hates that in me. I am not vocal enough they tell me  and I don't like to burden folks with my problems when the world is suffering with bigger ones you know. But I do thank god this forum/ messageboard is here and that I am able to vent my concerns and frustrations out, I thank all of you who are listeing to me patiently and are helping me face my issue with Graves like this head on.

-Gilda741
Blank
200220_tn?1361955154
I would be very interested in what alternative medicine you are doing.  I have ordered a book by Mary Soloman(I think that is the correct name) It hasn't arrived yet.  I know I have to do something with my diet.  I hate taking a lot of supplements as It just doesn't seem to fit into my life.  I have tried and after a while I started getting lazy (couldn't figure out the correct spelling for lacks)  oh my memory.  I don't mind taking a few pills but as many as my health doctor want was rediculous.  There is so much to learn and what works for one doesn't necessarily work for another.  Please keep us posted on what you are doing and as soon as I am doing something I will keep you all posted.  I too am trying to cope with the onset of this diseasel.  I had no idea the thyroid could cause so many awful symtoms (symptoms).  lol   linda
Blank
Avatar_n_tn

Seeing a doctor seems to be fatal :)

I wouldnt let them irradiate me agan FACT

Nil
Blank
Avatar_n_tn
Applecore => Mary Shomon's book "Living Well With Graves Disease" is a good book I just gave that back to my public library it was 4 days late but I seem to learn that this author does tend to veer more aid for the hypothyroid patients more. But all in all she gave me alot of isight on the do's and don't of RAI too. As for alternative medicine I am trying to figure which foods I can or can't have and that won't aggravate the gland's hyperactivity, the reiki is something I have been mulling over to have done to my neck for a while now. And not to sound hokey or anything, but another book I read was given to me as a birthday gift called "Healing Mantras" by Thomas Ashley-Farrand, this book has kept me and my psyche afloat for 3 and a half months. I recite certain healing mantras day and night when time permits and just when I think that I have no energy or feel like **** and there's no more information that I can dig up on my health issue l swear, no lie I get more help in the form of new doctor's names, new treatments, etc that I can try. These healing mantras have kept me grounded and calm, I swear, but you don't have to take my word for it. I know many folks don't buy inot helaing mantras cause I certaiinly didn't at first but I hate to admit it it worked for me. And as for diet, I keep it simple, no soda, no fast food (including fancy yummy restuarants), no sugar, no sweets, not even a pinch of salt even if its not the NON-iodine kind, and no fried food at all. Now I know I basically crossed off pretty much food off my list here but I eat sparingly and small meals during the day. Boiled chicken, not too much red meat, if I am looking for bread I stick with whole wheat, skim milk (not that soy junk), once in a blue moon I have a mozzarella stick or two, fruits I try not to OD on but I try to keep it balanced, and once in awhile I have a small kiddie box worth of cranberry juice to fight the urge to have a soda and veggies I only eat corns and peas as my side dishes. I mean my friends tried really hard to take me out to dinner to my favorite steak house and I ended up ordering my favorite meal but grilled thinky sliced steak and a side order of french fries with a nice ceasar sald no dressing, I gave the fries to my friends ate the steak and the salad and called it a decent birthday. As for the b-day cake I took two bites and left the plate alone and had my cousin take my b-day cake home with her. Temptation is tough to deal with if its around you when its not no worries. This diet may look extremely stringent but its keep me from crossing any wires with my meds or from aggravating my hyperthyroidism any further. Not one endo has been able to tell me point blank what I can or cannot eat, so the onus is up to me to figure out, n'est pas?


Nilbymouse => OUCCCHHHHH, doctors sometimes yes can be fatal but their bedside manner and attitude towards patient's leaves something to be desired when you ask any questions whether it be about treatment , surgeries or dx's and they just plain out dismiss you as a hypochondriac or ignore you all together. It hurts my wallet and my heart still when I can't find an endo who is a THYROID SPECIALIST.


-Gilda741
Blank
200220_tn?1361955154
I use the scriptures to keep me stable.  I think that positive statements create good paths for us to follow and allows the stress to leave our bodies thus enabling us to heal more quickly.  I happen to believe that God exists and that He is directing my paths.  He has shown me this.  I am not good on responding to food choices that are good for me.  It seems as though I feel like I am missing something if I don't eat what I want.  I know this is really bad as I recently have been (I believe I am repeating myself, forgive me) diagnosed with major food allergies and told that I could be crohns disease if I continued on this path.  I lost 50 lbs about 5 years ago and was very disiplined by eating only when I was hungry and stopping when I was mildly full.  I could eat anything that I wanted and it is hard to change that mentality even though I am eating whenever I want and for the wrong reasons.  I am emotionally eating, I am sure of that.  I am not fat but am starting to be overweight just a little.  I am 5'8" and weight 168.  I've gained 20 lbs. of the 50 I lost since I have been hypo and eating out of control.  With all of the symptoms that I was having, anxiety, I just couldn't seem to control the eating.  I have been avoiding some foods, peanuts, bananas, but it will take some work to find out what I should eat according to thyroid and allergies as they are to everything, wheat, rice oats, greenbeans, dairy products, on and on.  I don't know what to eat except meat and vegetables, but not all vegetables.  Can you see why I haven't done anything.  Please forgive me for complaining this morning as I awoke out of a dream that wasn't pleasant and still can't seem to get out of the feelings from the dream.   It makes me feel a little discouraged but the Lord always has an escape for me and your comments allowed me to vent on this forum and share some of what I am going through.  I donot want to gain back my weight (for one thing my clothes will not fit). I do a stressful job - taking care of mentally ill elderly ladies in my home.  I love my job but it is stressful and when you don't feel good yourself it makes it at times seem impossible.  I need to work and it scares me when I think I might have to stop.  My ladies are old and I would like to keep them until they pass on.  That is what my dream was about, feeling as though I couldn't continue and feeling weak and frightened.  It makes me mad when I have something like that.  I know I can do this job and it is because of the weakness in my mind yet that this happens.  I am not straightened out with the tsh yet.  Last test 3 weeks ago was 7, down from 19.  He says 5 is normal but my MD says he prefers 1.  I won't know until I get there.  I also have nodules pumping hormone into my system whenever they want.  They didn't die as they were supposed to from the RAI.  

Please forgive me for just telling all this morning but I really needed someone to listen and my poor husband hears and sees enough.  It is hard for him to understand but he tries and he for the last 5 months has taken over caring for my clients.  He never cooked and he did all the cooking for that period of time.  I am starting to cook and get back into the swing of things and for that I am grateful so it is not all doom and gloom, just don't like to feel bad at all.  

I know this is boring but It sure makes me feel better to let it out.    I don't know how you do it resisting food.  I cook every day for 6 people and I love to cook.  I need to find good food that is good for you.  By the way I try to do all organic when I can get it.  

I have not asked my endo if he is a thyroid specialist, just assumed he was.  I think I will ask him that along with all the other questions that I am learning from this forum.   lol   linda
PS.  If you have a bible, the  psalms are great for repeating when you are not feeling well.  (:
Blank
200220_tn?1361955154
Blank
Avatar_n_tn
Oh my word, anytime you want to vent I'm all ears. Let it all out. Still waiting for this crooked hospital endocrine to get back to me with my blood tests, started on meds and begged the archaic dinosaur of an attedning endo if I can have a liver function and liver blood count tests. he said there's no need for that or any kind of uptake scan or even RAI which I was extremely thrilled and confused at the same time.


I am sorry I haven't been back on here for a few days (kinda comabtting a bed bug prb at home family wants to handle it by themselves with those do-it-yourself kit and I am begging them to get professionals to exterminate). Between moving furniture & washing all my clothes in extremely hot scaldling water to get rid of any bed bug infestation I am so tired, not sure if my thyroid or nerves acting up. I only wish I had a dryer to dry my clothes in high heat too but hoping just washing them wil be enough.  Started Methimazole and Metoprolol & really not sure how I feel (been 5 days, still not sure what to eat so I don't have any bad interaction with these meds, plus the idiot dr. raised the dosages 125 MG of metoprolol & 20 MG of methimazole,  I think its a bit much IMO. I still feel as though something is missing inside of me and since this idiot attending endo @ this hospital endocrine clinic won't answer my questions or concerns at all regarding side effects of these meds, I'm at the mercy of these young hot shot pharmacists, which don't know how to help. I am confused all around. Oh and those mantras & prayers that I have been saying lemme tell you something when I recite them I feel a twinge more upbeat and more safe in knowing that I can stand straight through the day. But I only wsh there was a place where I can complain about my new endo right now he makes me feel so small and stupid that I just nod my head and leave more frustrated than when I started, it hurts that they get to treat us like loyal paying dolts.

Ok well its time for me to head out... but keep me posted Linda...

Gilda741
Blank
200220_tn?1361955154
I just posted on AR10 queston. I was feeling sorry for myself that I didn't have anybody to talk to about how I was feeling.   Sometimes I don't even know how I feel.  I just want to quit and do nothing.  I would do what I know to do but don't know what to do and it is so much trouble to call the doctor and then which doctor.  My GP had a baby and a sub is in.   My endo makes me afraid to call him as he pooh poohs any symptoms that I tell him about.  He is going strictly by the tests and he says my symptoms are so erratic and I guess they are.  I lost 5 pounds overnight last night even though for the past couple of weeks I have been steadily gaining.  I took 20 mg of methimazole before I had the RAI.  Then I took nothing (I can't remember exactly if that is true, but I think it is) for about 1 year.  This is a really fuzzy time for me.  Then the anxiety attach hit and I found out I was hypo.  I am now on 37 1/2 levothyroxin (levothyroxine).    I didn't have a lot of confidence in my endo but it does seem as though I am getting better.  Maybe the stomach is another  problem.  

How did you find out you had bedbugs?  I have been reading about that lately.  That sounds like a lot of work.  

I know what you mean about talking to the endo.  I have made a long list of questions this time as I am learning more and more from the forum and I will get some better answers this time.  How can you ask questions when you don't know anything.  

Thanks again Gilda -    Linda (:
Blank
Avatar_f_tn
someone sent me to a post here....here is what I asked earlier and no one is helping....us as patients aren't saying its about cancer or sides....its about a disease we got for some reasons....if methimazole isn't dangerous why are they checking my liver until treatment every two weeks knowing they skipped on my for 5 years without offering a single treatment.......

I AM BEGGING FOR HELP....I HAVE TO MAKE A DECISION...PLEASE HELP ME.....



either way thank you annag966....lets stop acting like babies and fighting and actually take care of one another......this is stupid....we have a community for a page for support and most of you are being rude.....facts hurt...you can't take everything to heart but we don't have to say terrible things either.....someone might be able to help someone else.....lets not crucify but help........

here was my post.....earlier....


I have had Graves disease for about 5 years now and am getting ready to get treatment with surgery.   I don't know how to put this but I am looking to see if I am on the right track with getting the surgery over the RAI treatment.  I just want some personalized advice but it seems when I do want to talk about my concerns with my Dr. he teases about me overreacting or "overthinking" the options.  
My concern is I will not go into remission with the medication, its not making me feel better so I have to choose an option because I've been feeling really bad lately. My primary care physician doesn't agree that nothings been done for me yet.  So my Endocrinologist put me on 3 methimazole and one synthroid to shut down my thyroid and supplement.  I will be seeing a surgeon but it seems suggested against to do surgery if RAI is available to me.  This is what I don't like about RAI....
I have two small children ages 2 and 3 and I'm an at home mom, it would be nearly impossible to stay out of contact with them for the time frame that I need for RAI
I am going to be 30 next month, young and don't know if I want more children.  I don't like what RAI can do if you get pregnant within the 6 months to a year time frame.  I conceived my daughter taking precautions and it can happen again.  
I don't like the ratios and concerns with patients that need the treatment twice and the concerns with having it a second time and if I did how much longer I would have to wait if I did want more children.    
With this being said, being these questions haven't been answered no matter how many times I have asked them....there are no other options for dr's in my area so I need to know, do I have validity in having the surgery instead of the RAI or am I over reacting?
Blank
213044_tn?1236531060
Yes, you have several very good reasons to want surgery over RAI.

1) you don't have to go off your meds if you are Hypo. Not valid in your case, but still...

2) it is faster, the recovery time is short, it is faster to get you on the correct med dose.

3) It is easier on your body because of #1 and #2.

The risks are;
1) contracting Staph while you are in the hospital.

2) damage to you vocal chords.

3) infecton from surgery.

4) thyroid storm, a risk shared by RAI

5) regrowth of tissue.

6) complications from anasthesia.

Both options have good and bad.

RAI is less invasive.

I chose RAI. I won't know for a year if it worked, and my levels may bounce all over the place for that year. Then I may get to stop my meds and do it again. Going very Hypo was no fun, either.

Or have surgery like I wanted to in the first place.
Blank
Avatar_f_tn
Again, I did not recieve RAI for Graves but we are about the same age and I do understand your concerns especially where your kids are concerned and the possibility of having more. I wish I could give you the information you need but all I can do is wish you the very best of luck in making what sounds like a tough choice.
Blank
197575_tn?1215536224
I am high risk for cancer recurrence so RAI was not an option for me.  I think it's better than having my neck sliced open for a neck dissection.  Think about everyone that has had chemo or radiation for cancer treatment.  Of course it isn't great but it beats the alternative.
Blank
393685_tn?1325870933
This topic as all related decisions to me can be a very personal choice to make. I saw this post at 4:00 this morning and have been mutteling it over all day.  I know you want to reach out for guidance and we want to desperately give it to you - I think that is why this tread is so long.

Bot TT and RAI have their pluses and minues. IF you have that choice , as some don't you have to think it through and pretty much go with what you feel. This would be after you have heard ALL the sides of both and many have many consultations with a few reputatable doctors.

Hun - in the end - it has got to be you to decide. not any of us. At this time I am facing a new chapter on my disease and it is tough to make these decisions. This is where faith - but personally in myself and spiritually must be one for me.

I will never go into another health decision uneducated as well as having a strong support system involved and this place is my miracle. BUT - in the end I will have to go on the path I decided to go with and heal with too. As well each and all of us will do.

Please out weigh you heart and see where your thoughts get balanced. One thing we know -  all of us have been blessed with a sense of strength and courage now that we belong to this awful disease. we must listen and move on that.

Your in my thoughts.
Blank
Avatar_n_tn
I have been reading the posts...some are pro RAI and some are opposed.  My own story is that I received RAI in July and nearly died  from a thyroid storm - heart rate was over 130 bpm, and I was taken by ambulance twice within the first week to be stabilized with heart medication.  I was nearly comatose the second time.  Now, I have liver damage and damage to the right rear of my brain, causing me to have no balance.  The third time I went to the ER, my esophogus was enlarged and collapsed due to the radiation.  I am now hypothyriod, which was the only side effect I was told would happen, and I accept that.  My endocrinologist won't talk to me because he said he's only ever seen one other patient with these issues, although they are documented in the endo journals.  I would never do this again.  That's my own personal opinion as I continue to find more and more damage.  I am honestly questioning whether there was enough iodine in the pill I took to limit the radiation to my thyroid.  I have no way of finding out,  Any suggestions?  My skin also burned from the inside out, all the way from my trunk and up my neck.
Blank
Avatar_f_tn
It seems there is just no right or usual when it comes to info provided by doc, what treatment will do for/to you, etc.

I have known I have Grave's since 2004.  I think I have had times of hyper and hypo for most of my adult life.

These things I know:

1.  I don't lose weight.  When I gain a lot and get very puffy, I will be hyper shortly.

2.  I took PTU for a couple of years with some success.  Dose should have been tweeked by doc, but was not.  Was tweeked by me - when I was not able to get off the sofa for days at a time, I was not able to take meds and would eventually feel better and take pills again - until I was not able to get off sofa and unable to take properly.

3.  When first nuclear med doc tried to stuff the RAI down me, he told me only about 14% of the patients had eye trouble as a result of the treatment and that was usually the people already having eye trouble.  I was already having it.

4.  When I read on a internet group about how people had gradually reduced their meds, I did that and went into "remission".  My antibodies were always there.  

5.  According to my Endo this week, I should not plan on traveling for a long time after RAI as I will be 'glowing' and have trouble with airport security.  (This is NOT, for me anyway, like an xray as previous poster stated).  Warnings to avoid contact with people and pets is for their protection as you are a health risk to them.

6.  My insurance will not pay for the amount of blood tests I need. Treatment is pretty much out of my pocket.

7.  I am taking methimazole now and was able to get 'normal' results after about 6 weeks.  At about that same time, I started having trouble staying awake during the day.  My day was basically get out of bed and go to the sofa and go back to sleep.  So, I take less meds and become hyper again.  Blood pressure stays elevated a lot of the time - even with meds.

8.  This week, my doctor told me  I WOULD gain weight.  I never lose weight when I go hyper, so this is a problem.  I am past worrying with my looks so much but hate this as I get so puffy that my arms and legs don't bend well and it is difficult to get in and out of the car  and doing normal every day tasks.  It is also a problem when you can't keep clothes that fit.  

9.  Having life threatening cancer would totally change my outlook.  The only issue with cancer would be survival.  It is not reasonable to think people with cancer and people with Grave's would have the same feelings about the treatment.

10.  Most everybody I talk to knows somebody that has Grave's and had RAI and is cured without any complications.  But, my husband tells everybody I am doing fine now....

11.  This is a bad disease.  While I am so happy that I don't have cancer and many other horrible diseases, I feel like the life I previously enjoyed has been taken from me.  I have a different life now.  Instead of scuba diving, hiking, sailing, etc, I watch TV and play computer games.  I also get angry at the drop of a hat.  REAL angry. I cry alot.   I could list many, many changes.  When I moved and changed doctors, I got a copy of my medical records and discovered the doc had mostly listed my problems as being due to me being an obese, middle aged woman who will not exercise.  Oh, I forgot to mention the stuggles with muscle loss...  No mention that I was a size 8 before this began.

12.  Yesterday, I told my endo I was ready to go with the RAI, but today I don't know.....

13.  What was I talking about?  Since I have had Grave's my memory is so bad it takes me about twice as long to do most things because I keep forgetting what it was I was doing....
Blank
Avatar_f_tn
Many doctors don't know how to dose with methimazole and done properly, it isn't likely to be hard on your liver. The proper maintenance dose for methimazole is between 10 and 2.5 mg per day, after the initial blast that people get to calm their hyper symptoms after diagnosis, which for most people lasts about 6-8 weeks.

There may be a few exceptions but a dose in this maintenance range is going to bring most people's FT4s into line, rendering them euthyroid. It is a very small dose and with the exception of those rare people who experience agranulocytosis (which is also dose-dependent and tends to happen right at the start, with the high dose), most people could take this indefinitely, which is the preferred approach in Europe. In addition, some people will go into remission after 3-4 years of a low ATD maintenance dose.

I think a lot of the misunderstanding stems from doctors who do not realize you can, and must, lower the dose dramatically after the FT4 starts to fall. My previous GP was a good example, who thought he could blast my TSH into rising with 60mg a day(!), not realizing that Graves suppresses TSH for years.

It's important to know that these alternatives are out there. In America, many people with Graves are rushed into RAIs before they even have a chance to understand the nature of their disease, and aren't told of the potential serious downsides. No question, RAI is a godsend for cancer patients, but it's not right for everyone with Graves.
Blank
Avatar_m_tn
i have graves with subclinical hyper since september last year ....have not started on any meds, will be starting next week...meantime i take lemon balm to keep my heart calm (my normal was 65 beats but lately range in 75-85 beats), L-carnitine (there is some research on this, l-carnitine keeps the liver good and stops the thyroid hormones from acting on the cells) - must get vit d tested, mine turned out to be extremely low so i m on 10000iu vit d3, vit b12 is also generally low in such cases, mine was too and am on 1mg b12 along with b1 and b6, besides i take ca + chelated mg (for bones), omega-3 (this helps with the joints and the eyes), 2-3 brazil nuts for selenium, low carb diet with plenty of vegetables and small portion of protein.....i dont have any symptoms as such, so i guess all these help....all of u out there can research these tips and see if they help
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Thyroid Disorders Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
Top Thyroid Answerers
649848_tn?1357751184
Blank
Barb135
FL
Avatar_m_tn
Blank
gimel
MI
168348_tn?1379360675
Blank
ChitChatNine
1756321_tn?1377771734
Blank
Red_Star
Queensland, Australia
Avatar_f_tn
Blank
goolarra
Sisters, OR
Avatar_m_tn
Blank
flyingfool
WI