OK, so after finding my nodule in November and being messed about for nearly a year because my old GP refused to examine me properly, I had my Thy4 nodule removed by hemithyroidectomy and isthmusectomy in September.
Last Wednesday, I was told that it definitely was cancer (I kind of knew before my consultant said anything, because there was a Macmillan Nurse with him), and my case was being referred to The Christie for a multidisciplinary team to decide on what's going to happen next (they meet this Friday).
My consultant did say that the most likely action would be for the rest of my thyroid to be removed, then followed by radioisotope therapy, so I've an idea of the practical side of what's going to happen, but I guess I feel the need to talk to people who've been through thyroid cancer because I feel less comfortable about the situation than I thought I would.
I know I am more than likely NOT going to die because of it, the cure rate is very high and the such, but I still feel strangely scared and I'm not entirely sure why. I think the radiotherapy might be the greatest source of anxiety, because it seems like something that really restricts what you can do, and I don't know if it makes you feel ill or if it starts the same day as when I have the second thyroidectomy (this is probably all online, but I'm getting information overload & conflicting information when trying to research and am realising I'm probably best talking to experienced people, especially since I need to vent a bit as well).
If anyone can tell me about their experiences of radioiodine treatment and give any tips or advice, I'd be really grateful. I'm feeling quite lost and useless at the moment, and it's getting to me a bit.
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I can only guess what you felt when the diagnosis came. Shocked I should imagine and brain whirling around.
I have my thyroid gland but I would make sure that when you are provided with thyroid hormone replacements and not doing so well, even though you've increased to an optimum dose, that they will provide you with T3 to be added. You really shouldn't have to source it yourself and you cannot be left with clinical symptoms.
I've seen people on here mention that they are not being prescribed T3, is it something that isn't provided on the NHS at all normally, or more of a postcode lottery thing? I definitely had concerns about T3 replacement because of seeing it mentioned on here (and people saying they felt awful because of not having it).
I was very certain it was cancer from the get-go because it had so many of the warning signs, yet on the day I was going to get my results my brain did quite a number on me and decided that I was going to be wrong and feel silly about being so certain, so it *still* came as a shock, even though I pretty much knew what the outcome was going to be. I guess no amount of being prepared for a diagnosis of cancer could be enough!
You're right - you cannot be 'prepared'. However, T3 was prescribed for cancer patients, so I believe, along with T4. I was also given some added to T4 (I didn't have cancer I just was very unwell on levo) It was then around £25 per month and has now risen to more than £300 which I think is absolutely astounding. The company that provides UK T3 is the only one with a Licence so there's been no investigation into the hike on prices. The only people who'll be happy are the Associations who've never approved of it's use in the first place (not reading new Research Articles I should think - know little or nothing about Thyroid Hormone Resistance (don't even believe it's possible) but are happy prescribing other prescriptions for the symptoms which do not alleviate the patients'.
There are some other T3's availabe but have to be on a 'named-patient' basis as not licenced. Many doctors wont prescribe and members source their own. I hope you don't have to buy your own. One of our Advisers and his team have had a Research Paper accepted which proves that T3 is of benefit with T4.
You should have seen my face when I saw the "now risen to more than £300", I could have swallowed a sofa!!! That article you linked is very interesting, especially as it also mentions connections with fibromyalgia, which I'd assumed I had (I have a genetic condition that has a high comorbidity rate with fibro - I am in constant pain that is wider spread than my joint pain issues and my identical twin is confirmed as having fibro, so I'd just assumed it was the case). If my replacement hormones reduce my pain, I will be quite the happy bunny - silver lining and all that!
Dr Lowe who was also Director of Fibromyalgia Research Foundation said that people who were diagnosed with that condition recovered with T3 at higher doses than normal. Those who had fibro were usually resistant to thyroid hromones so had to have a higher dose than normal to relief their pain.
I'm so sorry to hear your story... I don't know what the symptoms are or signs... I don't think apart from the normal blood test I've ever had any exam to rule any cancer... I have been meaning to post for signs etc, so your post has kicked me up the behind... Big hugs to you and imagine we are all holding your hand through this next period... Jo 😊 x
I only discovered my nodule by pure coincidence, it was sheer luck but Facebook seemed to have me added to a page that I didn't recognise (something like "forgot to think" or "suggested posts") and it posted up a video of a guy called Dr. Alan Christianson (a naturopath, which I don't like as I think it's dangerous to present that sort of thing as medicine) who was talking about how thyroid cancer is becoming ,pre common and how important it is to check your neck. I followed the instructions he gave, and was shocked to find a lump on my left side. When I went to my GP, she poo-pooed me, felt around near my EARS and wouldn't touch where the lump was (in the traditional place for a damn thyroid to be) and said she'd send me for a scan to "shut me up" - she put it as so low priority it took six months for the scan appointment to come through.
So, basically I can't recommend doing a thyroid self examination enough. A lot of my symptoms are so generic (tiredness mostly, but also discomfort because the lump fused to my trachea and made swallowing uncomfortable / prone to choking) that they're easy to miss.
Here in France if you have a sizeable nodule they remove the thyroid gland completely within a couple of months. They do not do FNA. I was found to have a 4cm nodule only 1/5 was cancerous. Papillary. No other treatment was necessary only suppression of TSH results. It depends on which type you have and the treatment afterwards. Good Luck.
Thank you! My Macmillan Nurse (well, her colleague as she's on annual leave, they're very good at making sure you're covered, which is very reassuring) called today to say that the team agrees that the best thing is to get the whole thyroid out (it's going to come out on the 16th of November) and have radiotherapy - I think they're very keen to be thorough.
My nodule (when I saw my consultant he mentioned that it was a "variant" of papillary, I've asked for a copy of my pathology report to get a better picture, luckily enough I have friends who work in cancer research who can explain anything I don't understand - I have OK medical knowledge, but don't profess to know anything close to what they do) was stretching into the isthmus, so I suspect they might have concerns about how well contained the cellular damage was.
The main thing is to get an experienced surgeon, one who performs many thyroid operations every year. Until it is out they really cant see exactly what was going on. Try not to worry until then, I hope it goes well for you.
Hi, I'm a bit further along the process than you so hopefully I can put your mind at ease a bit. I am a 34 yo female with a diagnosis of papillary thyroid cancer. Do you know which type you have? I have had a total thyroidectomy 5 weeks ago and am waiting for radioiodine treatment, which is booked for 4 weeks time. My recovery from the thyroidectomy was fine although I was originally not on enough thyroxine and had symptoms of hypothyroid (weight gain and tiredness) but nothing too debilitating. I should point out I had a baby a week before diagnosis so am pretty knackered from being a new mom anyway. Have not needed T3, and dont really see the point in worrying about an issue that may not ever arise. Ive been told the radioiodine will be pretty symptomless although I may get a sore throat. Isolation for 2 days then precautions to take for 2 weeks. You have to take a low iodine diet for 2 weeks before radioiodine. Please feel free to ask any questions youhave and ill see if I can help. YOU ARE NOT ALONE!
Oh my god thank you! Yours sounds like it has a lot in common with mine (sans baby), I'm 36 and was told it's a variant of papillary (I've asked for my report to get a better idea of what "variant" means in this case), which was odd as my FNS was first decided to be a Thy3F, then regraded as a Thy4. I'd thought that since the F in Thy3F refers to follicular abnormalities, it would be a follicular cancer, so I was a bit thrown when he said it was papillary. He did say 5 days for the radioisotope isolation, so maybe there's different approaches depending on region, however even 5 days doesn't bother me now as I've found out that there's free wi-fi in The Christie and I can take my laptop. Awwwwwww yeahhhhhh!!!
I'll update when anything else happens but ive got a date for my RAI now, 23rd November. Ive not been told if its low or high dose but I'm likely to be in for two days then precautions for ten days so in comparison to the above im guessing that must be pretty low. Anyway my precautions include "stay 3m away from kids" which basically means I cant go home seeing as I have a newborn and a three year old. I think im going to book a holiday cottage somewhere and exile myself. My fna results were a thy5 so im grateful as that seemed to save me from lots of messing around. Just straight in and total thyroidectomy. I also will remain on T4 right up until treatment, and will be given thyrogen for the two days prior to treatment. Im so glad I dont have to be without it! Hope you're getting on OK Sporf and have come to terms with the diagnosis a little more. Hopefully your medical friends have reassured you a little bit. Looks like we're in this together! Kind Regards, Jen. Ps Free wifi! Pfft my hospital has no wifi and you have to pay £10 to watch TV for a day!!!
Just reread original post. You definitely have a gap between thyroidectomy and radioiodine and there tends not to be a hurry to do the radioiodine. If you have one of the more common types of thyroid cancer they tend to be slow growing and slow to spread so I wouldnt worry about your delay accessing treatment, although it does suck. When I found my lump I was sent by the gp to "rapid access" and was scanned same day. FNA two days later. I too was amazed at the diagnosis. I was sure I wouldnt have cancer too.
Various risk factors will be weighed up by the MDT ie type of thyroid cancer, size of tumour and your age to determine whether your remaining lobe should be removed and whether radioactive iodine is required afterwards.
After hemithyroidectomy histopathology determined I had Hurthle cell carcinoma and I had completion thyroidectomy 3 months later. Because I was scheduled for radioactive iodine ablatement (RAI) I was prescribed Liothyronine (T3) (which has a shorter half life than Levothyroxine) the morning after thyroidectomy. I had RAI 11 weeks after thyroidectomy. T3 was discontinued 14 days prior to RAI to allow TSH to rise and a low iodine diet adopted. I was switched to Levothyroxine when I was discharged from quarantine.
The dose of RAI required will determine the extent of the quarantine you will need to observe. I had high dose RAI which meant 3 days hospital quarantine until my level of radioactivity reduced and then 21 days restrictions on contact with other people, children and pregnant children. If the dose isn't high you may not require hospital quarantine and may only need to observe the 21 days restrictions the nuclear physicist will advise you of. I didn't have obvious adverse effects from RAI but after a repeat lower dose for a whole body scan five months later I did develop a dry mouth at night and I sometimes have 'taste disruption' where some foods can taste sour and tomatoey. I'm now in my 5th year of remission.
It sounds like I'll have a similar journey to you, the MDT decided best thing is to get the whole thyroid out (it's going to come out on the 16th of November) and I'm to have radiotherapy. I'm 36, "a variant" of papillary was mentioned, and my scans had shown it was growing into the isthmus, which I think was the main deciding factor as it was only 1.9cm (but no other dimensions were mentioned). I've been told 5 days quarantine, which seems extreme compared to your 3, so I'm guessing my consultant was probably giving the longest time just to manage my expectations.
I'm glad to read that I won't be going thyroid hormone cold turkey, I'd read lots of people saying you have to go hormoneless but not when and for how long. Knowing I'll at least have some form of back up whilst I'm healing from the second op is a massive relief!
I've asked for a copy of my pathology report to get a better picture of what the "variant" means in this case, I have quite a lot of medics in my social circle to tap if I don't understand any terminology, including one who made some waves with her studies of the death of ovarian tissue from chemotherapy and another who actually does the pathology lab work, I feel so very lucky to have friends like that right now!!!
I was scheduled 4 days quarantine but managed to flush my system by drinking copious amounts of fluid and showering several times a day and was able to be discharged on 3rd day because mCi was <20.
T3 in the UK is the most expensive in the world. It is much more affordable online. So don't panic if you need it. Instead, write a post asking for reliable sources of T3 online (don't just google for it, it wouldn't be safe).
Sorry to read your news, the responses to your post have helped my understanding. I am awaiting the results of my partial thyroidectomy it's been 13 days now and it's not knowing the time lines which are driving me insane. I had talked myself into a worse case scenario and had been getting out of it but as I feel results getting nearer the panic is returning although my journey to where I am now seems to have been quite quick in comparison to others as I went to doctors on 15 Aug with ear pains. I know it shouldn't be top of my priorities but trying to look at time lines as my son lives in NZ and is getting married on 14th Jan and I am due to fly out on the 7th. I too am usually very controlled and competent but have fallen apart. I have probably read too much on line too but when you can't get hold of those you need to to give you information it was all I could do, but being able to read the advice / experiences of those who have been there has helped so much. I'm going to go back to work tomorrow to try to help me focus on something other than me. One thing that confuses me is that my surgeon was adamant that if I dont need the other half removed I definitely won't need any medication, but I suppose that is for the future when I get my results. Wishing you all the best with your recovery
I had thyroid cancer removed over 3 years ago and it's a real shock to the system when you get told it's cancer. Have they told you which type of cancer and the staging? How old are you too? All this information can determine the rest of your treatment.
I had the right lobe of my thyroid gland removed and the connective tissue (isthmus)between the two sides of the glands removed too. My cancer was contained within a calcified nodule and so they decided not to remove the left thyroid gland and to start me on replacement thyroid hormones instead. However, should you need your remaining thyroid gland removed and further treatment the process is as follows:
1) Remove remaining gland and connective tissue approximately 5 to 6 weeks after first operation.
2) Radioactive idodine treatment follows approximately 6 weeks later after you have followed a low iodine diet. Thyroid cancer uses the iodine in our diet to make thyroid cancer and suppressing it in the diet ensures that when you are given the radioactive iodine pill any cancer cells present in your body will absorb the radioactive iodine and be destroyed. Thus, reducing your chances of the cancer returning.
3) Radioactive iodine scans are used to see if your body has uptaken the radiation and to see if there are any cancer cells elsewhere in the body.
4) Start thyroid hormone replacement therapy for the rest of your life to preven the cancer returning. Your dose of thyroid hormone will be increased until your Pituatory gland, that produces Thyroid Stimulating Hormone (TSH) is suppressed to near zero of the range to stop the cancer returning.
As regards medication I was started on Levothyroxine (T4) to the maximum dose I could have without developing complications. This did not work and so T4 was reduced and Liothyronine (T3) was introduced and upped to the maximum dose of 20mcg along with 75mcg of T4. This did not work and I was still very ill. My endocrinologist then prescrived Armour thyroid (natural dessicated thyroid) on a trial basis with the view of getting my cancer hospital to prescribe it. After 18 months my endocrinologist could not longer fund my Armour and the cancer hospital refused to prescribe it. I was put back on T3 therapy only and was suicidal because I became so ill. After 6 weeks I saw my endocrinologist and asked for a private prescription for NDT and I'm now taking WP Thyroid that I have to buy online. I've been on these tablets for 2 months and I'm much better on these than the Armour thyroid. I think my issues were probably linked to the fillers and binders in the tablets because I do suffer from allergies. I cannot afford to buy my NDT because I lost my job to the cancer and I've been unable to work since.
I hope this rather long message gives you some clarity but if you need a shoulder to cry on please do PM me. I might not reply straight away because I have problems with my laptop and only go online every couple of days.
Take care, rest and take it easy doing some things that make you happy.
Blimey, was it the exhaustion that cost your job or the disruption the treatment caused? You are a trooper for keeping going through all that!
Thank you for so much information! I'm 36, and was told it's a "variant" of papillary. I was told today that the MDT meeting have agreed best way forward is going to be to remove what's left of my thyroid and to have radioisotope treatment, I'm guessing that they're going the full precaution route due to how the nodule was intruding into the isthmus - unless they think there's something about the type of papillary it is that means they're wanting to play it safe. I've asked for the pathology report to get a decent idea of what the score is there!
I had follicular variant of papillary thyroid cancer, in other words, the cancer cells were papillary cancer cells but within the follicular cells. There are 4 variants for each type of thyroid cancer, papillary, follicular, medularary (familial cancer - an hereditory thyroid cancer) and anaplastic cancer. Depending on your type of cancer, age and staging determins your prognosis. Being 36 is good because your prognosis will be better/longer. My cancer was completely contained within the calcified nodule and the hospital would have removed the left side of the gland if they could have biopsied it during surgery. Unfortunately, the nodule was so hard they couldn't biopsy it properly and had to do further tests in the lab. So, I was stiched up with the view that I would have surgery later. I just wish'd I'd told them to take it all out before my surgery as I always worry that there's still a chance my cancer can come back in the left side, and I'm careful with my diet to not eat goitre compound containing foods that can promote the cancer return.
My nodule was rather large and a big proportion of ishtmus was removed for biopsy. The results came back with the cancer contained in the right lobe and so, no further surgery.
As regards my job, I never went back to work because I was so ill. Plus, my boss wanted me out and she made it so hard to want to return. She would ring me up at home and shout abuse at me. In the end she got a shock my union got involved, she didn't know I was in a union, and they negotiated a severance package for me.
Please PM me if you need more information or support.
Bye for now, I'm off to make tea before my hubby comes back from his archery club.
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