Hi everyone! My surgery is tomorrow and I’m not sure how I feel about it at the moment. While I’m not nervous about the actual procedure, the fact that people keep telling me ‘DONT DO IT, IT RUINED MY LIFE’ is so disheartening. It’s very valid that some people have had bad experiences after surgery, but I don’t think thyroid treatment is one size fits all... In my case ATD give me severe neutropenia, so I have no choice but to remove my thyroid. It’s either that, or carry on with 0 neutrophils and risk dying from a common cold (not to mention the highly contagious and deadly virus going around at the moment).
Anyway, does anyone out there have any positive experiences with RAI/surgery? Surely it can’t all be bad! Would really appreciate some encouragement. Thank you
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Hyperbee
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Hi. I had thyroid out due to cancer so can’t comment on ATD. The op itself (two) was fine, one night in hospital to check calcium levels and all was good. It’s trying to get appropriate treatment with t3 if necessary which is the bug bear.
Relax, have a calm evening it’s what is right for you by the sounds of things. We are all different and react differently, surgery and replacement therapy could be your answer as it had to have been for many people who obviously are not looking for answers so arnt on this forum.
Thanks for sharing! I’m in Turkey so I plan on stocking up on T3 before heading home. I definitely think T4 supplementation only is unacceptable, after all our thyroids make T3 for a reason!
Thank you so much for the reassurance
I have no knowledge of your medical condition and the requirement to have a thyroidectomy. Indeed I've never heard of it before.
But if a surgeon is prepared to do this operation especially under the current emergency conditions, I am very sure it is very necessary for it to be done. I myself am awaiting an operation which seems to have been postponed as I have received no notification about it. The effects of the problem had me in A&E 3 times and admitted for over a week earlier this year.
You are quite correct that a TT has ruined many lives especially for those of us who have been given RAI treatment for residual thyroid tissue ablation (to kill the bits of the thyroid gland that the surgeon could not remove due to undue risk for the patient). You yourself will likely be offered this following the operation as it is cannot to forced upon you without your agreement. Following the operation you may be given prescriptions for Liothyronine (T3), a "drug" similar to the standard "drug" Levothyroxine (T4), which prepares you for being given the T4 following RAI. You should discuss the situation with the endocrinologist or radiologist to agree what process you should adopt for the future. You should ask them about NDT as they will not otherwise tell you. They are, however, under instruction to inform you of any medications that may improve your health if they are aware of any. It is quite unbelievable if they say they are unaware of its existence as they are certain to have encountered it professionally.
The REAL problem you will likely encounter is that neither of these doctors will inform you about the near certain problem you will encounter which is that Levothyroxine monotherapy will keep you alive (you will die without it!) but it will NOT give you good health especially if you have RAI. The ONE AND ONLY "drug" that will give you good health in that case will be Natural Desiccated Thyroid (NDT, often referred to by the brand name "Armour") and you are very, very, very unlikely to get that from the NHS.
I would suggest, even recommend that you delay/refuse the RAI stating that you want to get over the surgery first and see how you feel on the levothyroxine , keep full notes of how you are feeling each day, including especially your weight but also any additional vitamins or whatever you are taking. Then after 12 months or so, depending on your condition at that time, decide what to do next, ie RAI, NDT, etc.
In the meanwhile make every effort to discover from this and other PATIENT-LED websites to discover exactly what your options are. It is unwise to rely on information shown on web sites such as the BTA or BTF unless it is verified as being true by actual patients themselves.
I relied on what my doctor told me for 8 years which ruined my life to such an extent that moving to NDT from Liothyronine is failing to reinstate the very good health I had until I was forced to have my TT. I now don't believe a single word any health professional tells me unless I can verify it as being true for myself independently.
I’m not quite sure that this comment classes as a positive experience, but thank you for the info nonetheless. I will add that none of my doctors or surgeon have mentioned that I will need RAI after a total thyroidectomy. Also, patient led websites are what kept me risking my life with severe neutropenia for years because of the fearmongering re surgery/RAI. A lot of the ‘DONT DO IT UNDER ANY CIRCUMSTANCES’ comments are quite dangerous and irresponsible, especially to younger people who are more easily influenced. I’m not talking about your comment specifically, just in general. I wish I hadn’t listened to those types of comments and had removed my thyroid years ago, but better late than never. You say you had very good health before your TT, I have very bad health and a terrible quality of life. That brings me back to my original comment, thyroid treatment isn’t and shouldn’t be one size fits all.
I do appreciate the tips though and wish you luck with your surgery
Hello your knowledge is impressive thank you for sharing. I have a multinodular goiter as I have Graves Disease and thyroid eye disease. I have also cardiac symptoms from which I ended up fainting at work.
I am waiting for an ophthalmology and cardiology review after which I will have Radio Iodine Therapy.
Now as everything has been put on hold, I am also taking Ayurveda herbs and also finding the right nutrition for me as a try different unprocessed foods.
I am just not sure whether to have Radio Iodine first or surgery first.
Any suggestions?
I would appreciate.
My doctor told me is better to have Radio Iodine first but sometimes I think I should have the surgery.
My goiter causes me a great deal of discomfort sometimes.
I stopped all my hormonal meds for my endometriosis which I am sure disturbed my body including the thyroid.
We don't all have a choice do we. My surgery went OK. Aftercare was mixed but make sure you get instructions about what to do when you get home. I'm sure it will go well for you. More than 10 years on all is well and living a good, full life.
Thank you, so good to hear a positive experience for a change! I’m glad I’m finally doing it, even my surgeon said ‘it’s not possible for your case to get any worse’, and he’s certainly right. I’ve had no quality of life for years- being forced to choose between severe neutropenia where even a common cold can kill me, or being so thyrotoxic I couldn’t even walk up one flight of stairs without almost fainting. I’m in my early 20s. If I could go back in time I wouldn’t listen to the fearmongering re surgery/RAI, and would have done it much sooner. I’ll never get those wasted years of my life back but I have hope that after surgery I will have a better quality of life. My surgeon also has decades of experience which is reassuring.
People are not fearmongering they are telling you what happened to them when they had their thyroid removed. Someone I know now has permanent damage to her vocal cords so I am just passing on information. You might be ok and I hope you are but it is best to hear what can go wrong before you do this. I am also very surprised you are having an operation at this time with the coronavirus pandemic ... I hope you take the relevant precautions after your op. Just to add if you have already had your op I hope you have a speedy recovery.
Like I said people sharing their experiences is one thing, and that’s perfectly valid. Telling someone who has no choice but to remove their thyroid or DIE of neutropenia, to not do it because it will ‘ruin their life’ and equally silly comments, is another entirely. It’s possible for people to share their experiences without fearmongering. Regardless, I asked for positive experiences on this post. Again, just because it’s not right for one person doesn’t mean it’s not right for everyone
I’m not having RAI, I’m having surgery. It’s very good for you that you can keep your thyroid, but I can’t. Again, not everyone‘s journey is the same. I’m no longer going to explain myself or my decision to have surgery rather than die of neutropenia, because it’s ridiculous that I even have to. Either no one on here knows what neutropenia is/the severity of it, or I’m being trolled.
No you not being trolled just spoken to honestly. You sound very young and I am older at 60 and have decided that I can live with my multi-nodular goitre because at the moment I feel very well because I am on my second remission from Graves' Disease. I wish you well with your operation and just realise this site will be here to help you afterwards because your will need thyroid replacement medication for the rest of you life. Also you did mention RAI in your original post that is why I mentioned it.
Have a look at Elaine Moore's site in the US she helped me a lot at the beginning of my illness here is the link.
Again, it’s great for YOU that you don’t have to remove your thyroid. You don’t have life threatening neutropenia, and evidently don’t even know what it is, therefore this conversation is pointless. I’m fully aware I will need thyroid replacement medication for the rest of my life, that’s kinda the point, that I will HAVE a ‘rest of my life’. Thank you for the site recommendation, but I will leave this conversation here now. It’s my decision to make, it is made, please respect that and focus on other posts your input can be more helpful in. Have a great day
You have a lovely day as well and I hope your operation goes well. Just to add I might have to have my thyroid removed later if it becomes cancerous or too big so I might be in the same situation as you one day.
I did my radiation on Feb 2019, at first it was hell but after 6 months struggling, things started to get better! And now I am feeling almost normal except for occasional levothyroxine side effects which is tolerable. I only take levothyroxine 100mcg but I do eat better diet and drink more water
What kind of side effects? The reason I ask because some people need both T3 and T4 replacement after RAI. Your dose is quite low do you have any blood results to share with us like TSH, T4 and T3?
My dose is perfect for me and that is after trying to find the right dosage for many months! My Tsh now is 1.2 and I feel great! All levels of T3 and T4 are normal. In the early months before getting the right dosage, I felt palpitations and hot but that is just the levothyroxine side effects. I have to say that I do not need T3 added and 100mcg is the perfect dosage for me
I was reading that your present condition Neutropenia was caused by Carbimazole treatment .
Have you ever considered taking Regular L Carnitine and Acetyl Carnitine which are natural and have shown great results in controlling Graves Disease .
I became Euthyroid by taking Carbimazole and I am Now controlling my Graves with Those two Carnitines .. with great results .
I've regained my health immensely.
I've had Thyroid Storm twice In the past ..so I know how bad it gets .
I'm sure your decision for surgery is the best decision for you . ... but just wanted you to Be aware there are natural alternatives .. thank heavens .. as I am loathe to take drugs .
Hoping that all will go well go well for you during your surgery ... and after .
I did try L carnitine, it didn’t do anything. All the studies I read on it seem to say it’s effective when used in conjunction with ATD, but I’ve been unable to find any documented evidence of it being used on its own in a very thyrotoxic patient. It made no difference for me, at least. I’d be interested to know if anyone has ever managed to go from extremely thyrotoxic to euthyroid with L carnitine alone (without the carbimazole to bring you down to euthyroid first).
Glad it’s working out for you, and thanks for the well wishes
I understand that you used it after becoming euthyroid with carbimazole first, but in my case carbimazole kills my white blood cells and therefore I can’t take it. I tried taking L carnitina alone, but it made no difference in lowering my thyroid hormones. While your plan was obviously a great success for you, thank god, it would never work for me as I simply can’t get my thyroid hormones down without ending up with 0 white blood cells. I have no choice but to remove my thyroid, despite it not being the cause of the disease, as I have no way of controlling it and neutropenia is a very severe and life threatening condition. If ATD didn’t cause me neutropenia, I wouldn’t remove my thyroid. But as they do, I have no choice. To put it bluntly, my choices are to either remove my thyroid or die of neutropenia. The former certainly seems a lot more appealing to me!
Thank you very much for the encouragement, I feel confident in my surgeon as he has decades of experience. I’m also fine with the surgery process itself, I’ve never been afraid of medical procedures. I may just have to stay off this site for my own sanity, until after my surgery is over. I do wish people weren’t so quick to shut others down who choose to remove their thyroid, after all every case is different (mine is very extreme), and there’s no one size fits all approach to treating thyroid problems
I don’t see why anyone would assume I was apprehensive before my operation, I even stated in my original post that I’m perfectly fine with getting surgery.
I posted asking for people to share their positive experiences with thyroidectomy. Instead I received comments trying to dissuade me from going ahead with a surgery that I’ve already explained countless times I need or I will die. That is certainly shutting me down, not to mention downright dangerous and irresponsible. I will no longer be responding to comments that don’t directly relate to the specific topic I asked about. My post asked for peoples experiences with TT, it did not ask for peoples opinions on whether I should remove my thyroid or not. That is my decision, a decision which I have already made. Time to move on. This is the last comment of this kind I will be addressing. Perhaps if any of you knew the slightest thing about neutropenia, you wouldn’t be advising young people to risk their lives just because you can’t get your heads around the fact that sometimes removing your thyroid can be necessary and life saving. My thyroid will be gone in a few hours and I’m very confident in my decision. Have a great day
madge1979 Carbimazole didn't agree with me and I came out in a nasty rash so I took PTU. I am so pleased you are well and I feel ok myself. Last year I was admitted to hospital with a thyroid storm so I do know how scary that can be. I have never tried L Carnitine but I might do in the future if I have a relapse.
Hi there .. Before you do Lora.. please read as much as you can about Regular L Carnitine and Acetyl L Carnitine .. they are the same .. but different ..
You will see what I mean when you read about them .
Regular L Carnitine is a wonderful supplement which we all would have in our bodies naturally coming from meat etc .. but for me , who has never eaten meat in my life , it was without me knowing , simply missing !
Once I started to introduce it to my body I responded very well to it ... and very quickly too... I'm sure because I was so deficient in it .
I then experimented with Acetyl L Carnitine .. and was amazed at how it made me feel ..
I am not a Doctor.. I merely have a huge personal interest in all things natural for body health .
I've leaned a lot from my wonderful friend who is a Medical Researcher in a large hospital in Canada .. who like me , has Graves Disease .
She taught me about the 2 Carnitines and Their uses in the body .
We have used our own measurements based on our own symptoms which are very similar .
My GP made a plan with me .. that I could have my bloods tested every 4/6 weeks and that I could keep an eye on my TSH .. T4 ..and T3 and act accordingly to monitor my intake of Carnitines.. and the other supplements that I take daily ..
( which have fixed .. all of my miserable Graves Symptoms .. of which there were many !)
An added benefit .. and a huge one
at that !
Was that the terrible muscle and joint pain associated with Graves' disease has left me .. in fact I've had a Bursitis in my hip fur around 14 years .... it's gone since I started with The Carnitines .
In that respect it has worked because it acts like a FOOD for muscle, ligaments and tendons a nutrient to feed and enrich them again after deprivation.
And as we know .. having Graves , we are deprived of many vital nutrients , vitamins and minerals .
Anyway .. please Google Dr Salvatore Benvenga /HYPERthyroid Graves Disease
You will find much there to enlighten you on the subject .
I wish you well .. like me you have Empowered yourself and you want the answers
.. and we know that most Doctors certainly don't have them .. so we do it ourselves !
I can't offer any wisdom or personal experience re what you are going through but would just like to say - good luck; hope it goes well; thinking of you x
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Partial thyroidectomy
worried about thyroidectomy
Any ideas welcome. 
Total Thyroidectomy tomorrow😟
