Hi all
My NHS endocrinologist has suggested I have a thyroidectomy. I’m not 100% sure on the amount of experience of the surgeon he is referring me to.
Would I be better having the operation done privately and choosing my surgeon? Can anyone advise me whether going private is a good or bad idea.
Thanks
Private doesn't necessarily mean better and most private surgeons will also work within the NHS.
You are right to ask questions when having an operation and/or removal of your thyroid gland. It is a big thing to have your thyroid gland removed altogether unless you have thyroid cancer.
If you need an op I think I'd rather go by the NHS and even then, always try to get the informaton that reassures you.
Members who've undergone that procedure will advise and don't rush into any decisions.
Thank you. I was thinking the same. I’d like to go the NHS route but would I be able to I choose a different NHS surgeon? I know who I’d like to do the operation, the surgeon works private and NHS. I don’t know how much say I could have.
Would your GP be able to refer you to this particular doctor? I am not sure of the method myself but it might work.
Thank you
If you find one that works in the NHS just ask to be referred to him/her by your GP. That's what I did when having my gallbladder out it's called patients choice.
After meeting him/her if you change your mind you are perfectly entitled to try another surgeon.
A surgeon I know recently told me that you should be able to get stats on the surgeon you are seeing..how many ops they do etc.
I needed gall bladder out and had insurance, my provider gave me 3 names they would approve...one did colorectal surgery, one vascular and one mainly gall bladders. The other 2 did gall bladders but 10’s rather than 100’s!!! I only found this out by doing some research & asking those I knew were in the know!
If you go private ask the questions and get recommendations....it can be a minefield otherwise and they may not be as experienced at the op you need as the one you would see on the NHS....or equally may be the same person & save you a few pennies!
I looked the surgeon up that I’m having a consultation with and on the internet it said he was a general surgeon specialising in gall bladders. Statistics online said he’d only done 1 full thyroidectomy between 2012 and 2016. That has worried me.
Thank for the advice. Appreciate it all.
You can choose whichever hospital and doctor you like, when you find one you like then just ask your GP to refer you.
Thank you
No chance I’d let them near my neck!
Hope you find someone you have confidence in ASAP.
Yes it would worry me too the most important thing is a surgeon that performs many thyroid operations every year. I had mine done in France by a professor / surgeon who must have been around 60 years of age having done many thyroid operations. He worked for the French health system only not private. My particular operation was difficult having to repair my trachea as well.
I have had experience of two private sinus ops in the UK. The first one was fine the second one was useless. Because you pay it does'n't mean its good.
Yes, you must ensure that you have confidence in the surgeon. My boyfriend went though NHS for a tonsillectomy, he asked for a certain consultant, but the receptionist phoned him up close to the date of his op, and said that he wasn’t available. It was an urgent op, so he went along with it, and the op was a disaster and has suffered since. It turned out the surgeon was much less experienced. Just make sure to get referral to the one you want and stick to your guns. Don’t mean to scare you, just my experience, and I don’t think these things happen often, but you are right to do your research, and choose who you want.
It is good to be cautious, especially if having an operation and not sure how much expertise the surgeon has.
Thanks for the advice
Are you anywhere near Oxford? I can recommend the one I had for my TT. He was at the Manor hospital.
Are you convinced you need it? Why are you having it? It may be better to take a different route.
Hennerton, thanks for reply.
Unfortunately I’m not near Oxford. I’m Nottingham area.
It is causing me a lot of bother and anxiety. An FNA has come back as inconclusive.
When did you have your TT? And how have you been afterwards?
I had my TT in 2006, following almost a year of Graves’ disease not responding well to medication. I wish I had waited longer and pursued other avenues but in those days I did not use the internet and could not research it easily. My private consultant was utterly useless and it was a GP friend who found me the excellent surgeon in Oxford.
As far as health now is concerned, I would say I do the best I can without a thyroid but do sometimes feel there is something more I could do, if only I could discover the elusive missing link.
Most people have absolutely no problem with taking only T4, given as Levothyroxine but after a few years I felt very unwell and discovered the existence of T3, given as Liothyronine. It had never been mentioned by my GP or consultant. I have been on the two combined since 2012 and it has made a huge difference. You may have read about the problems now in getting this on the NHS. I am still getting mine but am not sure for how much longer. Look at posts on this subject in order to get all the info but my advice is to ask your consultant to put in writing that you will be prescribed both Levothyroxine and Liothyronine if you do not respond well to Levo alone. There is much to research on this subject for you to become knowledgeable but it is all on this site and you only have to ask to get the best advice anywhere.
As for the surgeon, I suggest you ask around everywhere and if nobody recommends anyone, look at surgeons online where you can check their safety record etc. Have you checked with your GP? Ask for a completely honest opinion. They are usually helpful when it comes to surgery and will know all the local ones. Is there anything that can be done to obtain a more definitive diagnosis?
Would you be prepared to travel to have one you trust? It is actually not a big operation and I came out of hospital the following morning with no problems afterwards. Hope this all helps.
Thanks for all that. Your story is like so many that I’ve read about. The medication situation is very scary.
Lots of good advice.
My surgeon was recommended by my husbands friend who is a cardiologist. It was done in Leicester, he is mostly a heart surgeon but mine was a bit tricky and partially attchd to my vocal chords, so i wanted an experienced surgeon.
The surgery went without a hitch, i had 14 blanket stitches across my neck (he certainly didnt pass any sewing exams!!) My husbands friend advised having it done on NHS as should there be any complications after private surgery, the NHS has no obligation to fix it, so could cost a lot more if any problems. I have friends who went private route and they didnt get better treatment. I cant fault the surgery and hospital i was in 5 days/4 nights but my GP & endo were totally useless after, pm me if you want leicester surgeons name. x
I ended having the NHS surgeon but privately since the waiting list was over 6 months.
He is brilliant but I don’t live in your area.
Best of luck.
That is a long wait. I had no idea. Thanks
Hi
I have had a total thyroidectomy for cancer. My NHS surgeon was an ear nose and throat specialist at Worcester Royal, he worked with my NHS oncologist who was based in Cheltenham. Two different health authorities. Both were excellent. I had a choice of where I went for surgery and did not see an endocrinologist until well after my surgery, that was not good.
Try and get referred to a ENT consultant.
Good Luck hope the outcome is successful.
I wouldn't have it removed unless you have cancer. You have to think about your voice. It's an intricate op. You need an experienced surgeon not too old not too young who is caring and will discuss in detail. If you are insured then you can pick your surgeon, best way.
My insurance was taken out after I found the nodules so I don’t think I’m covered to have it done, I will double check.
Thanks
Thanks for all your advice.
I feel so desperately ill constantly. Unable to do anything I’m so fatigued. Doctors say my thyroid is working perfectly.
Nodules scanned on NHS as U2 but I went private for a scan and one nodule was U3, had a FNA which came back inconclusive for cancer.
I was hoping a thyroidectomy may help me feel better, i just don’t know which was to turn.
Medication afterwards is a huge worry.
Thanks again everyone.
In my opinion I would not just get a Thyroidectomy it's not a cure per se for me it's been a living nightmare and I regret it every stupid day (thyroid cancer) do you have thyroid cancer or is it something else?
Hi
I have a U3 nodule that had a FNA but the results were indeterminate. So I’m in a grey area.
Thank you for your reply.
When did you have your thyroidectomy?
Hi,
I lost my thyroid 2 yrs and 2.5 months ago..lol. Its funny how you remember the things that drive you crazy for me my lack of thyroid drives me crazy and its not because my lab numbers are awful its because once your thyroid is gone and you labs come back as "perfect" your medical support pretty much writes you off and any issues your having ends up according to them as not related to thyroidectomy or medication....unless your lucky and you feel wonderful and your weight, mental moods and sleep improve then its worth it but only you can determine that.
my 21 yr old had total (private in nz). found cancer after biop said none so had 2 ops in short time. she had massive nodules - developed heart condition etc. once removed had radiation which wiped her out for a while. had to relearn "healthy" but now does everything again, heart reliable life goes on. it took a couple years to sort amount of levo - to date she has refused to try ndt (i use). 1 year after op she and friend won a crazy competition getting around australia, was on tv etc, involved multiple couples running around, completing activities and such - i was ecstatic, she was TIRED
21 is so young to have to deal with losing her thyroid, but she seems to have coped amazingly.
Thank you so much for sharing her story. Everyone has been incredibly helpful.
she was so unwell, was running on determination. was hard in the beginning but once the offending nodules were removed she could build from ground zero towards normal/ ideal
She sounds pretty incredible. Hope she continues to go from strength to strength. I think she will.
just to say that I had an FNA in the UK and was told no cancer. As soon as I moved to France just 4 months later I had my TT and in the 4 cm Nodule was 1/5th Papillary Cancer. I am so pleased that I had it removed.
You definitely made the correct decision. It’s very hard. Thank you
I had a parathyroid operatIon, during which they they took out all my thyroid and 2 of my 4 parathyroids. First they said would take out 1/2 of thyroid because had a big nodule but worked just fine, then they took it all out, non compressive goiter. Parathyroids are very small and behind the thyroid, control your calcium level which is you electrical system. You only need one but without any you will have seizeures the rest of your life and have to take lots of calcium which interferes with thyroid meds. An experienced surgeon is a must for parathyroid operation. My surgeon was very good and I do quite well with levothyroxine (t4) and a little liothyronine (t3). Its been over 5 years now. I wish you well.
Thank you for the advice. Will you still be able to get the T3? In my area it’s no longer available which is another worry.
Have you seen Dr Amy Myers articles/ work/ website she is a functional doctor - they are doctors that find the root cause of the problem (the expertise/movement started in the US but some doctors in the UK now) Dr Myers rues the day (as a young medical student)she had her thyroid removed as then you are beholden to live your life on drugs. There are so many other ways to treat issues rather than total removal except for possibly cancer and then there will be alternatives. Have you ruled out all the situations that may have damaged your thyroid in the first place eg, chlorine/ide, fluoride, Bromine etc in foods unflitered water, swimming pools, products such as toothpaste. Fire retardants on all new carpets/furniture. And then cut out personal products such as chemical ridden deodorants/ perfumes etc (anything containing the word fragrance!) so that's perfumed candles air fresheners all will damage the thyroid. You can buy plain old bees wax candles, use organic essential oils in coconut oil for underarm care and perfume. Lots of fluoride free toothpaste now. Use a shower filter - we absorb more chlorine from the steam in the shower than when drinking it. Use a water filter for drinking water. And don't use plastic - so no drinking water/drinks from plastic water bottles, or cooking in, cling film tupperware etc. Oh gosh and no plastic kettles And no non stick pans or bakingware - did you see the TV programme about the corrupt and planet, human poisoning by Dupont/Tefal just before Christmas. It's a world out there that just thinks of profit and care nothing for our health and we are the stupid generation that buys in to all this - no wonder our thrroid is being harmed. Is it possible that you have Hashimotos (autoimmune antibody attack on the thyroid) NHS didn't used to recognise or seek to monitor antibodies because the treatment as they see it would be the same. If it is autoimmune causal then would having your thyroid removed prevent ill health ? Any tissue similar would possibly still get attacked/ brain /other organs. Gluten proteins in wheat but most other grains have different forms of gluten in rice, corn etc. these proteins are so similar to thyroid tissue. These large indigestible proteins get thru the intestinal wall into the blood stream and the immune system sees as an enenmy/shouldn't be there and so builds antibodies to attack (forever) The immune system confuses the thyroid tissue most noteably with these proteins and attacks the thyroid/other tissue as well, destroying it. Have you been on a gluten free/grain free diet for months? It's difficult because they put wheat particularlyand modified starch particularly in most commercial products sauces etc even malt vinegar. And just to point out that the NHS test for 2 gluten proteins - there are at least 60 that are known of at present - so forget testing. Wheat and soy , corn (90% of crops unless organic is treated with glyphosate a herbicide (round up _ whatever you do - don't use on your paths and gardens) There are petitions everywhere online to get it banned but councils spray it everywhere, pavements, grass verges,parks bowling greens, golf courses, football pitches - on to the ball from the grass and then your skin. Be aware of all this stuff and totally avoid what you can. So eat organic only and stop eating gluten and grains (try it, it may make a big difference,better than having your thyroid removed . The first thing a functional doctor will tell you to do is remove gluten and all grains/ change toiletries and harmful household chemicals. does Sorry if you know all this and are living this route but wanted you to be aware if not. Dr Amy Myers does treat patients through skype prob introduction free. Has you tube videos and authored books about. Speaking of books - best read ever for this condition Dr Dati Kharazzian 'why is my thyroid still not working' Take your time, there's no rush. One more thing Oxford is not that far from Nottingham - go with the recommendation if going the operation route. I am Sheffield and my daughter was at uni in Oxford - took us 2hrs /2.5 hrs in heavy traffic to get to Oxford and it takes us 45 mins to an hr to get to Nottingham. You can always travel early hours to avoid traffic. Good Luck - exhaust all you can do to help yourself first 
Oh my goodness! Thank you so much for all the information. I will re-read it carefully.
I have so many doctors saying different things, that I’m bewildered.
Would I feel better having thyroid removed? Is there cancer present?
I just don’t know.
Thank you again for taking the time to give me the information.
Hi. I had 3 nodules. I initially went via the NHS route and had a scan and FNA which, like you, came back inconclusive so the possibility of cancer could not be ruled out. I therefore made the decision to have my thyroid removed and got the same man to see me via my private health insurance as I wanted it all dealt with immediately. He knew and understood my fears and concerns so saw me privately on the Monday and operated on Thursday of the same week, despite that not normally being one of his operating days. I’m on Levothyroxine and have fortunately been fine on it. My op was Nov 2016 and I don’t regret the decision to have the whole thyroid removed at all. For me it was better than looking at a lump on my neck wondering if it was cancer x
A good news story. Thank you so much for replying.
Can I ask did you feel ill at all with the nodules?
Do you know if it was cancer or not afterwards?
Thank you again x
No worries 😊
No, I didn’t feel ill at all. It only came to light when I was lifting weights in the gym facing the mirror and saw a lump at the lower part of my neck which turned out to be the largest nodule. I don’t know how long I’d had them for but it was like the large one became visible overnight as quite a sizeable lump. I never saw it when it was small and growing despite having quite a skinny neck.
The nodules were checked after the thyroid removal and fortunately all were non cancerous but surgery was the only way I was going to know for sure. I’m the sort of person who couldn’t just leave it to see what happens after 6 months etc as who knows what might’ve happened by then had they been cancerous plus it would’ve troubled my mind too much especially as I could see the lump every time I looked in a mirror. However we are all different and deal with things in different ways. I just knew that I had to have it removed straightaway for peace of mind x
I can understand that. The nodules I find are troubling me and when I was told in the beginning to leave them alone I was very upset.
Thank you for your replies.
Everyone has been very helpful in helping me make decisions.
Xx
Good luck in whatever decision you make x
Good luck in whatever decision you make x
my daughters bothered her (didn't say anything). she used to rub them while sitting/reading - did this for a YEAR before admitting
I was advised to pick the thyroid surgeon who has done the most thyroid surgeries.
Your'e welcome Lavender. It's certain that the world we live in today with all the practices we use and chemicals exposed to, that our grandparents/great grandparents weren't definitely damages our organs and can also give us cancer. I suppose we have to stop doing what is harming us and make changes. There is a famous quote " Doing the same thing over and expecting different results there lies insanity" If we don't make changes in our life then why should things turn out any differently. Our bodies kill off I think it is 3 billion cells a day and we replace them with 3 billion new cells. But what do our bodies have to build those new cells with, the food we eat, the water we drink and the air we breathe and what we are exposed to. Crap stuff makes crap cells that won't function well, just like a builder building a house if he uses poor quality materials he builds a poor quality house. Frankincense is known in alternative cancer therapy to destroy cancer cells (in everybody, who knows!?) I did hear on the documentary series The Truth Anout Cancer (look it up on you tube - there may be episodes still on ) a twenty+ year old girl talk of a brain tumour she had when at school 17+ not a good prognosis and she started massaging frankincense oil on the area of her scalp closest to where she thought the doctors had shown her , her tumour was and the tumour gradually shrank and the cancer was gone. She also put a drop daily + on the roof of her mouth anf the outside of the side of her nose - thinking the closest way to her brain. She had obviously heard frankincense kills cancer cells - so with nothing to lose she tried it. All I can say is I watched her interview but always have a bottle of frankincense in since. I buy 10ml roller glass botles from amazon. fill wih fractionated coconut oil (fractionated always stays liquid) from fushi . co. uk and put 5 drops of frankincense oil in and shake. Roll the bottle on the thyroid area on your neck and massage in twice a day - lots of info out there that this is supposed to help a slow thyroid. Can't do any harm and smells nice so why not. And considering the concensus that Frankincense helps kills cancer cells - another reason to use while making your decisions. I also use a little under my arms instead of a deodorant. Don't go mad just wash under your arms instead of using a deodorant but if you feel you need a deodorant then use the frankincense roller - smells nice and coconut oil just moisturizes. I use oliva soap from Holland and barratt - no nasties just olive oil. If you want liquid soap just great half a bar into a milk size pan and add almost full of boiling water. The soap disolves and voila you have liquid soap to pour into your dispensers when cool. If it doesnt quite dislove just stir over a low heat until does. I get my shampoo ( just 3/4 ingredients - no nasty chemicals from online cornish company purenuffstuff. The fact that our body heals itself and replenishes 3 billion cells per day should give us hope that changes made will sort us out. Think an operation or broken bone. The surgeon /doctor sets the bone straight or removes and sews up the stuff inside and skin but thats it - the body' repairs and builds those cells to grow the bone and tissue back not the doctor - the body heals itself, just doesn't need hampering with all the crap we give it and expose it to. Just another note re frankincense - I had a pea sized lump under my foot making it painful to walk. I had for 2 months just getting worse., so painful. I rubbed neat frankincense oil on before bed and the next day I thought that I was imagining the pain was a little less. I put on in the morning and at night and the next day a lot less pain. Not imagining. So I continued applying and within 2-3 days no pain, I still kept using and within 7 days no matter how much I dug about under my foot I could feel no lump - so that wowed me. I had also a scaly itch tiny patch on my top lip. Kept scabbing and then regrowing skin. I was worried re sun damage. After a few wks of thinking it would go and not re scab, it didnt and I remembered frankincense. It went and didn't come back after a few days, so yes I believe it works. I buy only Frankincense Sacra (there are various species - it is distilled from sap from the frankincense tree) Sacra is the only form you can take internally but more expensive. I buy Neals Yard organic from ebay. Also I use red light/near infra red light have a light from redlightman .co .uk . I shine the red light on my thyroid area for 5 mins everyday. See the info article on the site re red and nr infrared light and the thyroid. Brilliant that we can buy here in the UK for home use - people go to Swiss clinics for this treatment. If you are concerned re cancer buy or see if you can get on youtube The Truth About Cancer Series. Read dr Kharazzian's book re the thyroid. Much love
thanks LynneG for that suggestion about a roller ball bottle filled with fractionated coconut oil and essential oils- what a great idea! I had no idea about the coconut oil that stays liquid or indeed the availability of roller balls so that is great.I have it all ordered and cant wait to experiment!
Hi alchemilla, the bottles are only small 10ml so I use a tiny glass funnel to almost fill the bottle with coconut oil, then add the drops of essential oil. You probably know all about essential oils and their different benefits but just incase google Dr Axe essential oils or Dr Eric Zielinski - you tube videos on healing powers of. I always have a frankincense (Sacra) for thyroid and pain, lumps, sores and a Clary Sage which is great for the adrenals and hormonal health. so I rub on my ovary area and on abdomen. Either underarm if need. I love geranium to rub on the soles of my feet in the summer when have bare feet in shoes to keep smelling nice
Hi
I used to practise as a herbalist before my retirement so yes Im au fait with essential oils and have a fair collection of them. I always wanted to be able to use them as perfumes but didnt want an oily deposit on my skin but I gather fractionated coconut isnt oily - is that your experience?
I don't find it oily at all alchemilla
I would go private and check out the surgeon's experience. The recovery is the big thing. Keep in touch and I can help you.
Thank you for that. I’ve had some excellent responses.
Any help and advice appreciated.
Janeyjaney
That’s is such valuable information. Thank you so much.
Your case does sound like mine.
My thyroid hormone levels were within limits. I’d been feeling really tired for a long, long time but the last few months I’ve been incredibly ill.
I paid for private bloods and my throglobin antibodies were at 620. Other antibodies fine.
When are you due for your surgery?
Sheffield is not far for me to travel at all.
Who is your surgeon please? I can’t tell you how helpful you are.
I had a partial thyroidectomy in 2003 as a result of a goiter. I required no medication before or after. I had a full thyroidectomy 2 1/2 years ago. My Thyroid function was normal but I'd developed a goiter which was significant in size and was causing problems breathing, swallowing and sleeping. This resulted in me requiring medication. It took a while to get the right dosage but generally I have recovered well. My operation was done by the same consultant, my scar is almost invisible. I did have a consultation with him where we discussed his experience, success rates etc. It was on the nhs both times and i was happy. There were times before my medication was stabilised when I regretted the full thyroidectomy but now that I feel better I'm happy I went ahead. I've discovered that not all brands of thyroxine agree with me so providing i can continue to obtain the brand that suits I'll be happy. I would suggest that you make a list of questions and discuss with the consultant. Both biopsies came back cancer free for me. Hope this helps
Thank you for the reply. Yes it has helped. Thank you for sharing.
Lavender, Your TG antibodies are 620 ! That's autoimmune attack of the Thyroid tissue. Please google Dr Isabella Wentz - thyroid secrets, a series of interviews of the worlds leading thyroid autoimmune experts. and also google you tube videos of her info /articles/ website. I think it is 90/95% of thyroid issues are Hashimotos ( named after Japanese doctor) Raised antibodiies to thyroid tissue = Immune system attacking the thyroid tissue and destroying it. You have to stop the autoimmune attack. I think having the thyroid removed will still leave some tissue remaining. And as awful as it sounds, whatever caused immune system to build antibodies against thyroid can also be creating antibody attack against other organs which you don't feel symptoms of until enough damage has occurred. You need to go back to find the root cause which is almost always intestinal permeability or leaky gut as it is also known. I was told no such thing from consultants and GP 20 yrs ago( many would prob say the same today) However top gastroenterologist at Sheffield Hallamshire (renowned in Europe) Professor Sanders has written a book in the last couple of years about intestinal permeability and gluten issues without digestive symptoms of coeliac - all autoimmune. He showed me his published medical papers years ago on non coeliac gluten sensitivity and leaky gut. So goes back to what is making your intestinal lining leaky. As Dr Tom O'Bryan (one of the worlds foremost experts on gluten and gluten related health conditions) states, having your thyroid removed, whats next, your gallbladder, your liver, your heart , your brain. I know shocking. but any tissue is a likely target once the process has begun. Watch Dr O'Bryan's you tube videos. Many on his website under one of the green tabs, website thedr .com. As you are/were contemplating having private op maybe you can afford the best blood testing in the world to see whats going on - Cyrex labs (London) we are very lucky as have only been established in the UK in the last few years. Email clinician/owner Micki Rose at
Pure Health . co.uk and will be so helpful/ advice and if you decide to she will guide you through the testing process and results xx
I looked up my surgeon online and his stats were really good. He was nhs and private my biopsy showed type of growth that could be benign or cancer needed to be removed to tell. I went private as it was quicker and I was anxious. Look up a few and compare how many ops etc. Then go either way nhs or private.
Thank you. Did it turn out to be cancerous? When did you have your operation and you’ve been ok? I’ve been incredibly anxious since finding the nodules.
Hi yes it’s a very anxious time waiting for the op then for the biopsy results after. Mine were not cancerous but they were on both halves of the thyroid so it all went. Like so many others afterwards I was told my blood results were perfect on T4. I eventually paid to see an endocrinologist as my Gp said nhs clinic was closed to new patients. This turned out to be untrue I think as I’d already used Bupa he thought I could keep saving nhs money. Endo prescribes T3 which at first I bought privately but after I produced an email from the hospital saying Endocrine clinic had never been closed I threatened a gmc complaint and I now get T3 on NHS. The difference is amazing and I have seen research saying T3 is needed after TT as the Thyroid does produce some of our T3 as well as the conversion from T4. I am a non converter anyway so not sure why I am still given some T4 too. Surgeon was amazing does lots of ops. Scar is almost invisible but surgeons should not be the ones prescribing afterwards! Good luck
Thank you for your story.
I’ve read about the T3, it’s a scandal. I’m in an area where it’s not available. Glad you seem to be ok after a struggle.
Thanks again
Getting private bloods done 
where do i get privates bloods done?
Thyroidectomy aftercare 
