Posted , 9 users are following.
I've been diagnosed with an overactive thyroid. I was told I have cthree options, radioactive pill, surgery, or medication. I'm trying to decide which way to go. Thanks!
0 likes, 24 replies
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Sue1247 Mousetrap
Posted
I' 've just had RAI and wish I'd had a permanent solution years ago as I couldn't be stabilised. I went into remission once so see how you go on medication before you decide.
Guest Mousetrap
Posted
Do you have eye problems?
Many patients are first started on a course of thyroid-lowering medication in the hope that over time the thyroid normalises again.
If the medication is not working or has to be discontinued then surgery or treatment with radioactive iodine is considered.
The last two treatment methods will (in most cases) destroy your thyroid and you will need to take thyroxine supplements for the rest of your life.
Mousetrap Guest
Posted
Thank you for your reply. I'll try to give more detail without writing a book. I started taking thyroid hormone in 2014 for an underactive thyroid recimmended my my gynocoligist. A year ago my primary care physician discovered I was being overmedicated and over a period of six months we lowered my dosage until I wasn't taking any. My numbers never budged and showed that I now had an overactive thyroid. He suggested I go to an endocrynologist. It's been a year now that Ive been off thyroid hormone medication and mg numbers are still the same showing hyperthyroid. As far as symptoms, I felt perfectly fine when I was diagnosed with an underactive thyroid and I feel perfectly fine now that I have an overactive thyroid. I'm now told I need to decide between RAI, surgery, or medication. I've been doing lots of research and I'm very skeptical about going through with any of them. Not sure why I should risk having any or all the side effects when I'm not suffering now. I do know there is a risk of heart issues and osteoporosis if I do nothing, but I've apparently been hyperactive for over a year now and no problems with my bones or heart. I just feel like I should wait maybe another six months and see if I will eventually go back down to normal. Both my Drs say they've never seen this particular scenario before.
linda187 Mousetrap
Posted
claire14159 linda187
Posted
Linda, I found your being 'adamant about keeping your thyroid' an eye-opener. I wouldn't allow any surgeon to snip a part of me away unless it was critical to my health. But I am still so green about the ears regarding Hyper/Grave's disease, that I didn't feel I could categorically rule radiation or surgery out. I'll be seeing my endocrinologist again in about four weeks, and I'll take that opportunity to inform her that I fully intend to keep my thyroid (which, like yours, has served me so well up to now). Just so she knows how the wind blows. I see no harm in letting her know that I will do everything in my power to recover, and similarly I expert her to do the same for me. At my first meeting she basically said about 50% relapse after Carbimazole and when that happens we can 'discuss either radiatio or surgery'. I am getting more informed every day due to this wonderful group of people here, and with any luck at all, plus monitoring and tweaking of supplements and meds, I'll be in full possession of my thyroid for a long time to come. My current goal is to demonstrate to the endo that people can regain a healthy, functional thyroid and lose their antibodies.
Thank you for shining that light into a dark, uninformed corner of my mind.
linda187 claire14159
Posted
I was a medical transcriptionist for about 10 years and I noticed that they don't push RAI and surgery on children who develop hyperthyroidism. Most docs (Endos too) are not trained in the use of supplements whatsoever. They are just trained to treat this with Meds, RAI or surgery. Yet when your body is running hypethyroid, you are losing a lot of vitamins, minerals and amino acids and these need to be replaced. I was diagnosed in 2007 and was on 10 mg of Methimazole for 2 years with a TSH of less than 0.001 for that period though normal FT3 and FT4 and then I added the supplements. That is when my doc was able to start lowering my dose. At first she dropped too much too fast, (i.e. dropped first by 5 mg) so I called her and told her I had symptoms and had to add back 2.5 mg. Then my new Endo dropped by 2.5 mg at a time at the most. I am still on 2.5 mg 4 times a week, Sat Sun Tues and Thurs. and it keeps me in balance with virtually no symptoms and all my levels at a good place. This is a small price to pay compared to those who are only getting the 3 usual treatments. I think taking control of your disease by getting all the information you can and paying attention to your body is one of the most important things you can do to recover.
madge1979 linda187
Posted
here , here !!!
mx🌹
Mousetrap linda187
Posted
Thank you Linda. I'm curious about what supplements you're taking. I'm glad it's working for you.
linda187 Mousetrap
Posted
madge1979 Mousetrap
Posted
I'm so happy that I chose to take Carbimazole which is a thyroid blocking medication... but shortly after taking it I was beginning to feel much better and started a routine of taking supplements with a view to looking after my immune system
in an attempt to get it to stop attacking my Thyroid.
I was in a very bad state physically and mentally and thought I was dying .. I certainly wanted to, I was so bad.
Today I'm Euthyroid ie... normal and you just might be able to achieve that too.
the two other options to me were horrendous I did Not want to destroy my Thyroid Gland , which had looked after me so well before I became ill.
Several of my Family members have had and still do have Hypothyroidism as a result of surgery etc... and are in very bad health indeed due to negligence on the part
of their doctors , who know very little or nothing of the Thyroid Gland and how it works Please take time to glean as much information on this site as you can, before you decide which if those three options you will take ... and remember that many of us can and have succeeded in controlling our Graves' disease.
Best of Luck to you .
Luv Mx🌹
wendywhiz Mousetrap
Posted
Having been diagnosed with Graves' Disease in 2000 I can tell you that I would go with the pill solution. I take 5mg of Tapazole (Methimazole) every day and I am symptom free. The other two options are irreversible, and if you decide to destroy the thyroid you will have to take synthroid for the rest of your life. The tapazole is extremely inexpensive and the least invasive path
Mousetrap wendywhiz
Posted
Thank you so much Wendy! I am definitely open to hearing everyone's input and what has worked best for them and am glad you are better!
:-) From everything I have read so far I'm leaning one of two ways. Doing nothing at all, for now, or going with RAI. I'm afraid of the pill because of what I've read about it possibly harming your liver. I love to drink wine and really don't want to have to give it up if I don't have to! I don't have a problem taking thyroid hormone,which I know I would have to take in the end. I've taken it before. I'm hoping I can just get by without any of the procedures. They all scare me!
madge1979 Mousetrap
Posted
why mousetrap, would you choose to take Rai ... it will likely destroy your
thyroid ... your thyroid is your metabolism.. and is an integral part of your
body ... it is necessary and has around 300 functions in the body ..you simply cannot live without Thyroid hormone ... surely it is better to have your own thyroid hormone rather than a synthetic hormone .. and it is not always a simple solution to take thyroxine , as the dosage is very difficult
to get right , as many in my family have found ... my sister is literally
almost at the end of her life because of being wrongly treated with thyroid hormone meds.....it's a very serious step to take .
many here have tried and succeeded to control our thyroids and treated our immune systems with supplements to restore the balance after being ravaged by Graves' disease.
you certainly can become well again using Carbimazole.. and them supplements... i took and i know others did too..Carbimazole ... with no side effects. as you are monitored to see that your liver remains healthy throughout the treatment , which shouldn't last very long at all.
mx🌹
wendywhiz Mousetrap
Posted
As far as liver damage is concerned, I've taken methimazole (tapazole) since 2000 with no evidence of liver damage. I agree with Madge1979. There's no way I would want anybody snipping away at my thyroid. I've read enough about Graves Disease to believe that the other two alternatives to taking methimazole 1) surgery to remove the thyroid and a life of being dependent on Synthroid (aka synthetic thyroid) or 2) drinking radioactive iodine in 'hopes' that the iodine will kill off just the right amount of thyroid gland and not too much. If it kills off too much, and from what I read it is a very inexact science, you are, once again doomed to a life of synthroid and a sluggish metabolism. Of course you also have the option to do nothing, but an untreated hyperthyroid condition can kill you over time.
Sue1247 Mousetrap
Posted
There's a lot of scaremongering going on now. Some cannon control their Graves. Treatments with thyroxine have been successful for years with the majority and is not a drug but a hormone, which is better than carbimazole. If you've come to the end of the line with an overactive thyroid get it treated and get on with your life.
linda187 Sue1247
Posted
I think if you interview most people who have had the non-reversible treatments like RAI and surgery, you will find many are not happy with the results and now there is nothing they can do about it. Synthetic T4 is not the same as the real thing your body produces. As far as "many cannot control their Graves", many of us have done more things than just the ttreatment with Carbimazole or Methimazole to cure us and we have succeeded.
Sue1247 linda187
Posted
Good for you but carbimazole is not a cure its just suppressing the hormones. Don't delude yourself that your symptoms won't come back sometime.
linda187 Sue1247
Posted
Sue1247 linda187
Posted
I took the supplements too, went GF and it still kept coming back each time i was stressed or ill. We're not all the same are we? I even went into remission once and sepsis brought it back. Please allow for the fact that in some its more severe and some people can't be stabilised. I won't be posting any more and let you have the last expert word as usual Linda.
madge1979 Sue1247
Posted
Sue ... i'm sorry that you feel unable to write anything else, ..
i did more or less the same things that Linda did to get her good health back and it most definately Did work for me . the thought behind the supplementation etc. was very serious and intense ...
before i took any supplements i was extremely ill with Graves' disease i was verging on Thyroid Storm actually i think i did have it but know one would admit it to me !
and I had no idea what on earth was wrong with me . i gleaned much information on this site , which was invaluable to me .
Lindas advice is sound and well informed .. she never says that she is a Doctor , but she has had a career in a medical background for many years.
and her colleagues have given her excellent help with her condition.
I have found her advice to be extremely beneficial to me in every way .
Its true what you say about us all being different.. we each have the disease in different measures .. mine was Severe ! and now it's gone ...
i will be eternally grateful to those on here who helped me get well.
and it would be great if those with knowledge would continue to help us .
please don't leave ...
mx🌹