I go for surgery (TT and neck resection) to remove metastasic lymph nodes at the end of the week.
Any advice I should push for regarding my future prescriptions? The people I know here who have had a TT are only prescribed T4 drugs. I really want to be healthy and happy post surgery. My partner is a surgeon, but he knows nothing about thyroids, but he would be able to help me with prescriptions for T3 in the case the hospital refuses.
I take 5000 vit d and K2 daily and have a weekly shot of B12 that I take with folic acid. So I think I have good levels of vit d and b12 finally.
Any advice would be greatly appreciated. Thanks!
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rachelflorence
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Hi there! I had a TT 14 weeks ago, and I can tell you it is not possible to know what meds you will need right after surgery. Many people do fine on Synthroid, and others like me need Synthroid plus Cytomel, and others do well on NDT and other compounds.
You will need to see how you feel after the initial 2-3 weeks recovery. It takes 6-8 weeks to see if you will adjust to the initial dose of T4, and then it is a process of trial and error. After 14 weeks I am still not adjusted. I am working with my endo to balance these for a good result. I am closer and feeling much better - but as they say, no cigar yet. But my endo is great and so I am very lucky (I am in Canada).
My best advice is to focus on the surgery right now and you will need all your energy to deal with that. It’s a big deal no matter what they tell you and the recovery is not as short as they tell you. That is plenty to manage before thinking about meds just yet.
Once you have had surgery, please post to let us know how you are doing! I will be happy to help if you have TT questions and others here will provide excellent advice on meds etc.
Wishing you the very best of luck with your procedure and sending positive thoughts for the best outcome!
I should also add you may have other therapy relating to your cancer that may complicate the meds situation . This is another reason that it is hard right now to advise on what thyroid meds may or may not work for you. Again, sending you best wishes for your procedure.
Thank you Greekchick! I'll take your advice and see how the new me is post surgery. I have a crazy colon, so hoping whatever they give me doesn't create havoc with my delicate equilibrium. How are you feeling post TT? I bought a neck cushion, loads of those silicone strips and I have a few good books. Any advice of what I should throw in my suitcase?
Well, sounds like your ready for your hospital stay - make sure your pjs have a low neckline so it doesn’t disturb the incision and they won’t let you put silicone strips on right after - so those can wait too. Hospital gown is not good for neck incisions.
You may find it is easier to read books on a tablet or iPhone unless you have lightweight paperbacks - holding heavy books and bending the neck will bother you . Be prepared to lay upright with your neck supported for a few days - I kept mine upright for longer - almost a week - because it helped, you will have to see how you feel.
Your colon - another story. I don’t have problems so probably not the best person to advise, but general anaesthesia causes all kinds of unexpected issues for people- I am not one of those. And you may have no issues at all! See how it goes.
Make sure they (hospital) know about your colon issues - and then they will be prepared to help you should problems arise.
You sound a lot like me - I was trying to plan everything - and then I discovered all the things that simply could not be planned for or anticipated .
I had a great surgery by the way, and a good recovery - (I do not have cancer, I had Graves with a huge multinodular goiter). I am hoping for a good outcome for you 🙏🏻 ! All the best and stay in touch.
I bought XL t shirts and a pair of comfy pj bottoms. I am prepared to cut the neck into a V if I need to. I coudn't find button down tops anywhere. I had a bad biopsy, lots of swelling and pain, and I slept upright for a week, so I imagined I'd have to post surgery. The neck cushion really helped. I hope the doctor took my colon issue seriously. I took in the surgery records and various medications I take. If he doesn't look after my colon, I'll be in trouble! And so will the rest of the ward. Praying to the gods to keep me 'normal' and retain some dignity.
I think the planning is helping me find some control in this mess. I totally know I have no control. But I can pack my case!
I'm so glad you had great surgery and recovery! That makes me happy! You hear of so many horror stories. Good for you.
Also, drink as much water as you can post surgery - it will help your colon and clear out hospital meds and anaesthesia faster.
Ask if your surgeon is using a vocal cord monitor - THIS IS NOT OPTIONAL - and make sure he checked your vocal cords prior to surgery and after surgery as well.
Sorry for all this but I keep forgetting what to tell you.
I get a vocal cord test on Thursday. Is that as horrible as it seems, the tube up nose thing? My surgeon seems quite arrogant, he wasn't happy to answer my questions. I switched hospitals a month ago, so I only asked about what I had been told in hospital A. But I see the Endo, who is quite friendly and maybe I'll ask him. I would like to keep my vocal cords I teach at university and it could be tricky moving forward without a voice.
I am a uni prof also and that was the first thing my surgeon checked and rechecked - I had no damage. Be prepared for long voice recovery - 1 month you can’t throw your voice and another 2-3 months to be normal. I am almost there after 3 months - will go for voice therapy over the summer so I’ll be ready to teach and surgeon advised I use a mike in class .
The important thing is to work toward hormone stability. Small increases and/or decreases of hormone until balanced. Find a hormone replacement that suits you and stick to it to maintain stability. Many drugs cause poor or increased absorption of levothyroxine so be cautious. If necessary to take other medicines and vitamins keep them well apart.
Some anaesthetic, if it contains nitrous oxide can deactivate B12 so ensure good supplementation after surgery.
Be patient, some people bounce back, others take a few months or a year to find stability. Be prepared to feel emotional.
Ensure a good calcium rich diet in the future as if you have lost some parathyroid glands you may need to keep watch on calcium absorption. This may be more important when you head toward menopause.
If you get numb or tingling lips, mouth, fingers after surgery, report it immediately.
Good luck. I did not have too much pain after surgery so I hope you recover well.
Thank you! Excellent advice. I'm post menopause, with bone problems, probably due to my colon which doesn't absorb vitamins and minerals, so I really hope my parathyroids make it through surgery. I'm already feeling pretty emotional, could this be any worse...we are so complex, our bodies can't be treated as parts, and I hope my Endo can put me back together post surgery!
Thank you! So much excellent advice. I'll ask about my vocal cords, pre and post surgery. So many issues. Thank you for the advice re lymph node removal. I've apparently had this cancer for many years and surgery is going to be a challenge. I am scheduled off work for 2 works, hopefully I'll be feeling better, if not, I'll do what I have to do. I am well over my menopause, so at least I don't have those hormones floating around, I went in early at 38. I'll relax into the drugs, take your advice. Thanks for sharing! I'm glad you are feeling better!
I had the same 13 years ago and my advice would be to get up and walking about as soon as you can, even though you may not feel like it. That will help will the swelling/ fluid retention.
As for medication I was fine on Levothyroxine alone and One- alphacalcidol (D3 for Calcuim replacement- as parathyroids also removed in op) for many years and only now feel that I maybe need T3 which you cannot get in England without sourcing it yourself.
I think the shock emotional/ physiological side of the operation, for me, took the longest time as my tumour was due to MEN 2a and other members of my family also needed TT around the same time.
Good luck again, everyone's experiences are so different, the main thing is getting rid of the tumour. 😊
Thank you, I am so grateful that you and everyone else have weighed in! It's amazing how little prepared we are! But I am NOT thanks to all of this advice. How awful that your family were also going through your same condition! My cancer has spread, so I am having a resection as well as a TT and I am trying to think of the things that could go wrong (the surgeon gave me a huge list to sign off a , from bulbous eye to shoulder damage and other delightful things), and just focusing on getting the tumour and metastasis removed. Thank you and I hope you are almost on top of the world!
In would suggest you get a full blood panel before your TT including T3 and rT3, vitamin levels- d, ferritin, folate, b12, selenium and magnesium and cholesterol so you have your own body’s baseline.
I have a full panel. I've been tested a lot since February. I have a copy of at least two full blood work panels, which came back perfectly healthy. I'll keep them in a safe place! Thank you!
Make sure you have T3 and the vitamins. They don’t always test those in the UK. Italy may be different. Your own set point will be important to getting your emotional Heath back quickly once you are on synthetic hormone. When my T3 is low, I am an emotional and physical wreck. If it is low, you can point that out to your doctor and they can either increase your T4 or add in some T3.
I'll ask them to test B12 and Vit D and T3 on Thursday. I was tested, but I'll ask if they can add them on Thursday when I go in. But they took at least 12 little bottles of blood last week. My B12 and Vit D are always low, despite injections and taking 5000 vit d a day, but that is something I have had since colon surgery. But I am taking vit b12 and vit d in with me and will take it daily.
I am so sad at the idea of any of us being physical wrecks! How awful! But at least I am aware and will ask for help.
We will all be holding you in mind. Optimising your vitamin levels post surgery will be important to help the synthetic hormone convert properly to T3.
I just don't seem to absorb anything. No matter how hard I try. I buy the best vitamins I can afford, walk every day, get weekly shots, but I'm always borderline deficient. Before my doctor figured out my deficiencies, I thought I was depressed. He brought my levels up, and I feel so much better. But my vit d never rises to more than 30 and B12 below 200. I take all the co factors, K2, magnesium, folic acid, but at least I am doing better. I might get some loading doses of B12. Throwing thryroid medicine into this hot mess is going to make a huge hot mess! But I will just get it wrong until I get it right!
Treat yourself to a beautiful scarf to wear around your neck the first few weeks post surgery to protect from the sun and to avoid prying questions. Keep a detailed journal about how you feel physically and emotionally. The TT can send your emotional regulation into a tailspin and will be a sign that the medication might not be adequate. Best of luck and big hugs.
I was told by a more junior surgeons months after my TT for cancer that she advises people it will take about a year to be well afterwards. This is a big contrast to what I was initially told, which was that I would be back to work in 2 weeks!
In my experience, I wasn't told anything about needing RAI afterwards until literally days before, but it's a very long process. For me there was a 3 month wait after the surgery to have it (this is about the time I was back on my feet again). Then it's a big disruption, coming off all hormone weeks before, inpatient in hospital for a week, and after that recovering from being off hormone. Then 3 months after that, again just as I was getting my life back, a repetition of most of it for a scan. I didn't get the all clear at my first scan, which meant waiting another 3 months to do it all again.
For me, I had my first operation in April (I had a partial followed by completion thyroidectomy, 2 operations), then my final scan in the February of the following year. I had a few extras, so if you have only the minimum it could be maybe 5 months shorter. In your position I'd definitely ask questions about whether RAI will be necessary, just to give you that sense of timescale. For me, I was only told about each thing just before it happened, but I'd much prefer to know.
It was also my experience that during the treatment there was very little interest in adjusting my dose. I was on T3-only throughout, so that it could wash out of my system quickly for RAI (which requires the body to be starved of hormone so it sucks up the radioactive iodine). If you have thyrogen injections (I might not have got the name right) instead, these trick the body into thinking there is no hormone, which means you don't need to endure a week without. Because the doctors knew I'd be changed onto T4 (Levothyroxine) after the surgery, it was hard to get them to take seriously that I wanted to be well, now! I was actually very sick the whole time, and found out later I had very high TSH and was on completely the wrong dose. Some people are lucky and can be quite well and out and about in between treatments. I was in bed most of the time.
In terms of timescales, I would also expect to take an additional 6 months to get on the correct dose. This is the figure I mention to people with any thyroid illness. If you are very lucky it might be less, but it already assumes being fairly lucky and having a clear run, with extra complications it can be longer.
For things to take to hospital, definitely get nice pyjamas and slippers. It seems like everyone in hospital has nice slippers. I also take a bit of food. In Italy it's probably better, but in the UK the food is dire, and you get no fruit or vegetables! I bring soft fruit like plums, because it can be hard to chew something like an apple, bagged washed salad, and nice chocolates. The chocolates are partly a treat, but also quick energy if needed. Make sure the clothes you wear in are very baggy, I gained weight straight away and was in the embarrassing situation where some of the clothes I wore in didn't fit! I've often found myself staying in the surgical gown most of my stay because I didn't have much energy to change.
Make sure things are prepared at home for you to do nothing at all when you get back. The easiest to prepare food in the cupboard, any big chores completed before. I also have really needed a TV next to the bed, and plenty of DVDs and services like Netflix. Make sure someone is at home who will take care of you, particularly to cook your meals for as long as you can get away with!! I also find it useful to have two large sports bottles by my bed for water. I tried children's cups with lids, but they aren't really any better than a sports cap bottle. I had a chrome book before I got ill, and it was very useful because I wasn't up to sitting at a computer or using a full sized laptop. A tablet might have been just as good. I was able to read at times during the process, but at other times it was too much for me, when I could it was definitely more childlike, simplistic books. I managed to crochet quite a bit while in bed, and granny squares are a nice activity you can do lying down.
In terms of the emotional side, it can be a huge roller-coaster. Being low on hormone, which you'll end up being at some times, leaves you emotionally vulnerable. I couldn't even watch people arguing on a soap opera without being very distressed. It can also impact short term memory and concentration, which is very otherworldly. I really did feel as if I'd stepped out of normal life and into an alternative dimension at times!
Now that I've been through it, I advise people who go through that, to just hang in there. The only responsibility is to lie down, relax, only think about eating , drinking and pooping, and just don't worry about anything else. Make the best of it and stay in as good spirits as you can. Don't try to accomplish anything, or even to make sense of where you are. Sometimes it is really living minute to minute because you can't do anything else. Which, although it can be terrifying, is also an amazing and rather magical experience. If you fight it and try to do otherwise, that's when it becomes really difficult.
Before I had my cancer diagnosis, and had no idea how serious an illness it was or the prognosis, I made a resolution that my life wouldn't be ruined, it would just be different from what I'd planned for it to be. I found this plan really helped me all the way through, particularly not to worry and fret about things that hadn't happened yet, just to accept and deal head on with whatever happened. Actually I've had quite a nice time being ill, even though there are lots of bad things about it, because I went in knowing there would be a lot of bad, and determined not to be broken down by it.
I have RAI scheduled for July. My Endo is not waiting around. He thinks I've had this cancer for a very long time, and it's pretty advanced. So I have already been told I will be in hospital three days before as an outpatient and then in for two days and home 'alone' for 10. I have a diet plan to follow, which I haven't looked at yet, but will post surgery.
I bought HUGE pjs as I thought I would be bloated. I've been gaining weight quite steadily, despite eating really well and walking at least 10 kms a day, I am baffled. So I bought XXL tops and bottoms. Good advice!
I've taken a 'mental health' off work t'row, to get my bedroom ready for when I come home and I will get some shopping in for my return. But my exhusband and daughter are pretty amazing, so I will be well looked after.
I have wool. I could make a granny blanket with squares. That sounds like a great idea.
I've got a few series of game of thrones to watch, so something to look forward to.
Sounds like you are well prepared I don't think I thought of any of that before I went in. It was very downplayed to me, and I thought the TT was a little bit of admin to get out of the way!
Special diet sounds like it will be a low iodine diet, which I believe means you will have the injection rather than having to wait for the hormone to wash out of your system. That's good news, I wish I'd had that, it's hellish having to go off all hormone for two weeks. It also means you will get started on your long term thyroid hormone replacement as soon as you're out of the operation, which is also good news. It's takes a long time to get fully settled, so it's good you won't be losing any time in starting to adjust it.
Game of Thrones is great! I did actually have a few DVDs of that shortly after my TT, and found it a bit intricate for me. My favourite gentle watch is Jonathan Creek - very unchallenging and light. I'm quite a fan of detective shows, and Death in Paradise is another nice, light one.
I can hardly believe how many granny squares I made while I was stuck in bed! One huge blanket and a couple of smaller ones!
Good you've got plenty of people around you to help out! Good luck, and I hope you have a nice easy time of it!
Everyone is right about the emotional side. I was crying uncontrollably for weeks - despite the successful surgery and rapid physical recovery of the incision etc. Drug adjustment a different story.
I wish I had known about this forum before surgery - I would have been better prepared for that - it was unexpected and thus I was more upset than I might have been had I known it would happen.
Three weeks after my surgery I was in the surgeons office waiting for my appointment - and there were two women sobbing their eyes out - both TT patients!! It was a veritable tearfest in there! Not to joke about it but I was stunned. Who knew? But the wonderful people on this forum - when I wrote about this after my first week post op - were so reassuring and they confirmed I wasn’t totally crazy - so I am so grateful to them.
Oh man! Joy! I've been on a rollercoaster since February, so many tests. I have some CBH oil, so I plan on getting through on that. The hospital gave me a prescription for two bottles and I can get more if I need it. Hopefully, the oil will keep me calm (er)?
I don’t know about CBH oil as I have had no experience with that. By the way, I did not have cancer, I had Graves with a toxic multinodular goiter - but honestly from what I read, the removal of the thyroid is what causes all the emotional issues because it regulates so many body functions! I took clonazepam to calm down until my emotional waves passed. I don’t need it anymore and only really needed it for the first few months and then on the odd accession after that.
Again, you need all your energy to focus on surgery and that outcome - I didn’t think of anything else until I was home from hospital - I just wanted all my energies to getting through the surgery. You will have plenty of time to deal with other stuff after - and you may not experience some of what we have either. Not everyone has that experience.
I want to send you positive thoughts and huge hugs 🤗 - you will get through this and you hopefully you will feel better once all is said and done. You can always post or send me a message if you need moral support. All the best.
I'm sorry about your Graves and nodular issues. It must have been terrible. I think basically whatever we have had, our outcome is the same, we lose our thyroids. I know some people who have had TT and they tell me how well they are. My ex sister in law got so mean. She wasn't the happiest woman, but post TT, she really lost her sense of humour. I am going to try to keep thinking of the wonderful things I have in my life and hold on to those thoughts. The one good thing about being told I have advanced cancer is the way I think about my life. I will never take a thing for granted again! I'll probably feel bad. But I've had lots of surgery sadly, and I bounce back pretty well. At least I did! Thank you!
My exhusband is the kindest man. My boyfriend is a surgeon. My daughter is growing up fast and has already helped me through some ER moments. My dog is funny and very loyal. My GP is an endo and very kind. The hospital seems a little 'busy', and the surgeon a little arrogant. I have a few good friends giving me support. And now I have found this site, so I now have women who have already been through this, which is exactly what I need. THANK YOU!
Look at you! I don't think I have antibodies. I would know right? I just have cancer. I actually have a funky cancer. I have a healthy thyroid gland. I also have an ectopic thyroid gland which turned into a tumour and then spread to my lymph nodes in my neck. I doubt I'll get thin! But glad you did!
Well, you sound as if I have a lot of support and love in your life! That counts for a lot. I am equally blessed with a wonderful husband and son who spoiled me rotten after I got home.
Go glad to hear that you have so much good and lots to look forward to afterwards - keep me posted on how it goes 🤗
I think the biggest thing is that if you have an operation plus RAI it will add quite a bit of time to the process. Mine was 10 months from when I walked inti the operation until I walked out of my final scan (scan makes it sound like it's no big deal, but RAI scans are quite a big undertaking and will take a few weeks to recover from even if a person is lucky).
I'm not sure whether her mention of a year only applied to the treatment itself, or whether it was intended to include getting settled on thyroid hormone as well. If a person was incredibly lucky and had no hitches it's possible they could have the TT, RAI quickly afterwards (which includes the treatment dose then a scan on a lower dose 3 months later), be done in 6-7 months and then be lucky getting onto hormone and be all done in a year. But although I had 2 extra procedures, I wouldn't say I was particularly unlucky with the thyroid cancer treatment, I was also 33 and pretty fit at the time. I met lots of people who had had a far worse time, so it's probably quite easy to add extra to the time my treatment took, too.
Janeyjane, have just seen that you're onIy a few months out from your TT, too. I should have included in that post (or maybe I've already said it somewhere on this thread - memory not great!), that even if you're lucky and get through with no hitches it probably takes about 6 months to get settled on a thyroid hormone replacement dose. If you get any false starts or anything unusual going on it will be longer.
Unfortunately we need to have a lot of patience with thyroid illness, everything takes an awful long time!
I'm spoilt, my partner is a very patient, caring surgeon, although most of his life is dedicated to what he does. He takes a very human approach and his patients love him. Hoping the arrogant beast, who spoke very slowly to me like I was an idiot knows what he is doing!
As long as he is a very skilled arrogant beast, you will move past it because you will be better and — you don’t need to see him more than 2-3 times after surgery 😉
Great advice above. My advice, based on my experience of a total thyroidectomy, is that you go on T3-only (Cytomel) for about three months minimum. This will make you feel great and will suppress any regrowth of your thyroid cells - in case the cancerous ones choose to grow back. Levothyroxine needs a lot of "maintenance" before it is beneficial for a lot of patients (many of them on this forum), you have to fiddle around with the dose before you begin to feel well. Cytomel, T3-only wipes out this problem and also gives you a great boost for recovering fast and well.
Don't worry yourself into oblivion about this operation, (like I did!). Have faith in your surgeon. Think of it this way: whatever you have to go through is better than having a cancer in your neck, slowly choking you to death. With the exception of a sore throat it's mainly all over in 24 hours.
Regarding the vocal folds, remind the surgeon to be very aware of them. Tell them that you do not want the anesthesiologist to use them as a washer (a common technique) there are other ways of achieving their objective - to keep the pipe from coming back up (and therefore out).
I don't think I'll have the chance to speak to a surgeon. I had the pre op tests this am. So I am just going to hope that they know what they are doing. I'm at an endo clinic, they only do this surgery, so I hope I chose well and they just don't hurt my vocal cords or parathyroids or neck. Thank you! <3
I go in the morning. I didn't speak to doctor's sadly today about much, despite being in hospital for 7 hours, doing an ecg, chest xray and a tube up my nose to see my vocal cords. I hope I chose the best hospital. I just want to thank you for all the advice. I am new to this site, and have no idea how to keep in touch with you incredible women. But I'll figure it out once I get home post op. I would be extremely grateful If I could ask for your help post surgery. Thank you again, each and every one of you, for responding and giving me such great advice.
Post or PM me anytime. If I can help, I will - if not, I will try to recommend those with more wisdom than me! Sending you prayers and thinking of you tomorrow. 🙏🏻🤗
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I don't think I thought of any of that before I went in. It was very downplayed to me, and I thought the TT was a little bit of admin to get out of the way! 
help cant get my head around any of this but feel i need to be prepared for any problems after my TT due in a weeks time
Does anyone know why the NHS is telling GPs not to test Vit D levels anymore? 
Thyroid and Vitamin results in, would love to hear what you think
Not sure about new results after TT 
