Can I opt for a thyroidectomy?
Posted , 4 users are following.
I've been recently diagnosed with hyperthyroidism. They suspect Grave's, but we are waiting on tests. My doctor told me I have a 40% chance of going into remission. If I don't, we can either take meds for years or do the ablation. I looked at that and I really do not like the idea of ablation, but I don't want to have hyperthyroidism forever. Could I get a thyroidectomy instead or would they refuse? I plan on bringing it up only if I don't go into remission, but I am curious if anyone has any experience or knows if I get a say on that. I feel much more comfortable with the surgery than the ablation because I read you need to be careful about hugging, kissing, wash clothes separately, etc. That just seems a little scary and I take care of my baby all day, so close contact is unavoidable.
0 likes, 20 replies
lisandra_90524 kaitlyn13535
Posted
Hi,
If you were told you have a chance for remission hold off on surgery. Look into taking supplements like l'carnitine, etc. I was diagnosed over a year ago and also had moderate to severe eye involvement. I just had a thyroidectomy on June 30th and it wasn't a walk in the park. It was a two hour operation with an overnight stay in hospital. My surgeon has over thirty years experience and even with that my parathyroid glands were slightly stunned so my calcium levels dropped. I had tingling in my extremities and leg cramps. I am currently on calcium carbonate and calcitriol. My levels are now within range and the doctor is tapering the dosage. My voice was affected. It is still quite hoarse but getting better everyday. I can't speak that loudly yet. Prior to surgery I was only concerned with the scar. However, the scar is not bad at all. Since the surgery some of the inflammation in my eyes went down-not a whole lot but everyone has noticed an improvement. I will still need eye surgery in the near future. Nutrition and supplements are very important. There are tons if books out there please try to educate yourself. A thyroidectomy and/or ablation is quite drastic. I'll be on synthyroid for life. If it had not been that I had moderate to severe eye involvement I would have opted out. Also, make sure you take at least 200 mcg of selenium to protect your eyes. All the best!
kaitlyn13535 lisandra_90524
Posted
Thank you for the information. Sorry that you've had a difficult time with that. I will definitely wait to see how the medication goes, but I really do not like the sound of ablation if I don't go into remission. I would rather just have the surgery. But thank you for all of the advice and I hope you continue to feel better. Would you mind telling me why your doctor opted for thyroidectomy? Did the medication not work well? Why did you not do ablation? Very curious since I'd rather my doctor considered surgery over ablation but didn't even offer surgery as a choice.
lisandra_90524 kaitlyn13535
Posted
It was my decision to choose surgery over RAI because RAI doesn't "kill" the thyroid right away. It takes several weeks and in some cases you have to do it a second time. I'm the interim you have a surge of thyroid hormone that can make the eyes worse. My neuro ophthalmologist said initially it makes your eyes worse but that she would prescribe prednisone to counteract it. She said that with surgery you also run the risk of your eyes getting worse but the risk is less. I still took prednisone one week before my surgery and continued the prednisone two weeks after surgery. So far I haven't experienced further eye swelling (keeping my fingers crossed) I'm now in my fourth week of my thyroidectomy. Check out Amy Myers, the thyroid connection book-very informative.
Guest kaitlyn13535
Posted
Hi kaitlyn13535, I couldn't agree more with lisandra905024. It is important to get an accurate diagnosis first and to hear the advice of your endocrinologist.
While it is true that about 60 -70% of Graves' patients will experience a relapse after treatment with antithyroid drugs it also means that the other 30-40% are likely to stay in remission for years.
Regarding thyroid ablation vs surgery, your doctors are likely to suggest the method that carries the least amount of risk and the best possible outcome.
My advice to you would be to consider all options as objectively as possible.
Speak to your surgeon and/or radio surgeon and get as much information as possible.
Should you want to push for the surgery then you should know that treatment with radioactive iodine is not indicated if you are planning to get pregnant in the near future.
lisandra_90524 kaitlyn13535
Posted
madge1979 kaitlyn13535
Posted
RAI and SURGERY ... are irreversible !
And if you go thru with either ... you will become HYPOthyroid for life ..
many in my family have experienced this and being Hypo for the rest of your life is not a thing that I would want after seeing the results in loved ones .. and I would NEVER want my Thyroid Gland to be removed .. it is virtually Your metabolism !! And is needed for almost every part of your body as the thyroid hormone is found to be in almost every cell therein .
Please think again
I and many others have chosen to keep our Thyroids and NOT Destroy it !!
Instead we have chosen to feed and control our immune systems .. which is the culprit
It is your Thyroid Gland that is the victim here
Please try to educate yourself on your condition.. read all you can and ask more questions that would benefit you on here
And empower yourself to be well again !
.... YOU CAN !
Luv mx🌹
kaitlyn13535 madge1979
Posted
Thanks for the input. My doctor had gone over with me that I will eventually have hypothyroidism, regardless of the treatment I take. It just depends on if it's soon or in 20-30 years. Hypothyroidism is much safer and easier to treat than hyperthyroidism. And not everyone responds to medication, and their options are ablation or surgery at that point. I have done research. My question was simply: can I choose to have surgery if I don't go into remission? But thank you for taking the time to try to answer my question. I'm glad that medication has worked for you and you don't have to consider other treatment.
linda187 kaitlyn13535
Posted
Most doctors treating this condition do NOT know about the vitamin, mineral and amino acid deficiencies that it produces. If I had not done my research into this aspect of it, I would not have gone into remission. I had a TSH of less than 0.001 for two years until i added supplements to my treatment plan and quite frankly my Endocrinologist was shocked at my positive results and how quickly they occurred. It's been 10 years now and I am not hypothyroid or hyperthyroid. ALL of my thyroid lab tests are within normal limits and have been for quite a while now.
kaitlyn13535 linda187
Posted
I've heard endocrinologists don't make this connection and it's shocking. I will make sure my levels are good to give me the best possible chance of remission. Thanks for that advice, it had not occurred to me that that could be a reason I'm still not feeling well.
madge1979 kaitlyn13535
Posted
You say that you will eventually be
HYPOthyroid .. regardless of what treatment you have ..
I have NEVER
been told this .. can you explain how
starting with
Graves Disease ..
that you then
become HYPO
please ..
I have Graves and iam remission fir
over a year ..
But I'm intrigued
by this claim from
your Dr
Mx🌹
kaitlyn13535 madge1979
Posted
I believe it's because I developed it while I was pregnant. My endocrinologist said I may not get it until I'm in my 50s but that I will at some point.
linda187 kaitlyn13535
Posted
The only people I know who have that pattern are those with either Hashimoto's thyroiditis alone or with Graves plus Hashimoto's. I have not heard of this happening to Graves patients unless they elected to have RAI or thyroid surgery but not just with medication treatment.
kaitlyn13535 linda187
Posted
Well thank you for that input, but I think I will trust my doctor/aunt. She is good at what she does. If she says it will happen, I'm going to go with her opinion. She knows what my labs and medical history are. How can you possibly make such an assumption without knowing hardly anything about my specific case? My mother was hyper when she was young, eventually went into remission and is now hypo/Hashimoto's.
madge1979 kaitlyn13535
Posted
linda187 kaitlyn13535
Posted
I made no assumptions. I shared my experience. I am not saying that it is impossible, I am saying that in my experience I have not spoken to many Graves patients that this has happened to but I have spoken to a lot of patients who have Hashimoto's or Graves and Hashimoto's that this happens to.
madge1979 kaitlyn13535
Posted
Kaitlyn
Please don't be
angry ...
we are only trying
to help you ..
Linda is very very knowledgeable on this subject and
would only wish
you well ... believe me
Many people have benefited from her great advice
Mx🌹
kaitlyn13535 linda187
Posted
It would be nice to not have hypo eventually. I've only done one set of labs. We are waiting to see how the medication is working to do another set and have a clearer picture of what's going on. Perhaps my aunt made the conclusion based on my mom's history. The fact that I may not have hypothyroidism eventually does give me doubt about going for surgery. Right now I just feel so sick that I'd do anything to feel better. Sorry for being short and I really do appreciate all of the advice you've given me. I'm getting all of the supplements you mentioned today and I hope that helps.
madge1979 kaitlyn13535
Posted
Kaitlyn,
did your Doctor tell you you had antibodies in your Blood test results
if so, are they Graves' disease antibodies.
if you would like very good advice ,,, you could get a written copy of your
blood results results ... come back in her pe and .. under a New heading
print them out in here .., including the numbers in brackets.p, which are the ranges of your Lab.
From there, we can have a look 👀 at them and give you a very good indication of what they mean for you.
From those bloods you may find, for example that you are short in B12 ...many of us Thyroid patients are low in this ... particularly i believe Graves patients.
if this is the case your Dr may advise you to take B12 ... Many doctors
never make the association unfortunately. and the lack of B12 can have
terrible effects on us.
Please Google
B12 deficiency / Graves' disease
to see exactly how its makes you feel to be deficient .. devastating !
B12 is only one of the things that our wretched bodies are lascking because Graves' disease robs us of so many vitamins minerals and nutrients... all because it has made our matabolism go nuts and run at a hundred miles an hour ... while it reduces us to nervous wrecks in the process.
I was very ill a couple of years ago before i was diagnosed with Graves...my GP had no idea what was wrong with me ... and it is no insult to your Dr /aunt .. but Many GPs are extremely ignorant of the symptoms and results that untreated Thyroid disease has in our bodies.
You could if you are interested Kaitlyn, also Google
L Carnitine .. Graves disease
D3
K2 mk7
zinc and copper
selenium
B6 for energy
B1
B Complex
ACIDOPHILUS 40 Billion
after i took Carbimazole meds after diagnosis i immediately
started to supplement with the above .....and more ...
my aim was to build up my immune system that was being overworked
and lacking in so much.
so that it would leave my poor Thyroid Gland alone !
... and Kaitlyn... it has worked .. worked very well for me ... and for many
other people on here ... the members of my family, and there are many ,
who are Hypothyroid ... have never tried this strategy !!
they have just taken the little white pill called Thyroxine ... and many of them have never even had the dose changed in many many years ... and have become very ill indeed ..
I believe wholeheartedly in this way
of treating the immune system.. my husband had cancer and after Chemotherapy i started him on a regime of
building up his immune system in much the same way as i've done .. and he is Cancer free today many years after his sad diagnosis .
You could consider giving it a go ... it's NOT jumbo jumbo Kaitlyn
it was a Godsend to me .. I was so ill i couldn't have cared less if i'd lived or died . today .. i have my very happy life back again and can't believe i was so ill.
and by the way ..Linda gave me so much hope at the time .. she is
surely a most generous woman who not only became well herself but
loves to help others who are still suffering , the way that she once was .
any other questions on supplementing or anything else .. please just ask.
Love M x 🌹
kaitlyn13535 madge1979
Posted
They said we needed to do another test to confirm Grave's, but they are pretty sure that's it. I'm definitely going to start getting copies of the reports, thanks to the suggestion of many people.
My GP wasn't sure what was going on either. She listened to my heart and sent me straight to the hospital. The hospital referred me to an endocrinologist after they got my heart slowed. The endocrinologist is my aunt, fortunately.
I will look for those supplements. It's overwhelming how much this effects our entire body. I hope those will help. Linda also suggested some as well.
I'm glad that worked for you and your husband! And I hope it works for me too.
madge1979 kaitlyn13535
Posted
....Uh-Oh .... i forgot to mention a very important Nutrient ..
Magnesium ... for info in its importance
Google : Magnesium Deficiency ... Graves' disease
it can and does help with
Anxiety
focusing
muscle twitching
diabetes
acid reflux
fatigue
sleeplessness
cramps in limbs
joint pain
restless legs
palpitations and heart disease
and
much much more ....
there are others ..but all of this , at one time, can be somewhat overwhelming !
but please never poo poo it .....it's as i said before, not mumbo jumbo
its a medical fact that it is integral for the health of mind and body
and doctors are very aware of it too.
read all you can about the deficiencies that Graves cause... and learn
how to replenish those stores within our bodies ... there lies
the answer to your good health . seek and you shall find ..
best st if luck luvvie
mx🌹