Thyroid cancer

My niece has just been diagnosed with thyroid cancer. They want to remove her thyroid ASAP because she is going to Hong Kong in February to care for her mother and may be gone for two months. She is OK with the surgery but wants to know why she has to swallow radioactive pill after surgery if her thyroid has been removed. Is this really necessary and why? They said it's in case there is still thyroid tissue left but wouldn't that mean they did a poor job of removing it all. Thanks for any insight you can give.

55 Replies

  • teena, there can be thyroid tissue elsewhere. During the first trimester of fetal development the thyroid descends from higher up and it can leave cells behind. There can be cells anywhere along this duct which is supposed to disappear once the thyroid 'lands' in the front of the neck. But people can have bits of thyroid tissue on the backs of their tongues, under their chins and elsewhere.

    Sometimes there is thyroid tissue elsewhere as well but that is very rare.

  • Thank you. That's a little scary because does that mean the cancer could show up elsewhere?

  • Teenarock, it isn't possible to completely clean the thyroid bed during surgery and it is also possible for cells to be freed into the bloodstream during surgery. RAI will be taken up by any thyroid cells remaining in the body after surgery and zap them.

  • Thank you for this reply.

  • Clutter, the doctor is telling my niece he can't know what kind of cancer it is until after he removes it. Does this sound right to you?

  • Teenarock, yes, that's my understanding. The FNA sample can detect malignancy but not what type and the larger sample that goes to histology will enable them to say what type it is.

    It's one of the reasons I'm confused by reports of overdiagnosis of thyCa where they claim ultrasound scans are detecting micro papillary cancers. My u/s showed a large nodule but wasn't able to determine it was benign or malignant. FNA was inconclusive but histology on the tumour determined Hurthle cell carcinoma.

  • I've recently had thyroid cancer, and had my thyroid removed in April of last year. It sounds like they haven't explained to your niece how disruptive the timescale is. If it's anything like mine she'll be in no position to be going on long trips or caring for anyone else.

    My treatment lasted until February of this year (although it was 3 months longer than the absolute minimum, because I wasn't given the all-clear on my first set of scans). When I went in to have the first half of my thyroid removed, I was told to take 2 weeks off work! In the end I never went back for more than 1 day a week, and am currently on benefits waiting for (fingers crossed!) my dosage to get sorted out.

    I haven't got the timescales in front of me, but I think I was given my RAI treatment in August, but I had my thyroid out in 2 separate operations, so I think they gave me about 2 months to recover from the surgery before going in for the RAI. This was about the timescale where I was starting to get out of bed and feel a little better. Then they wait another three months before a follow-up scan can be done.

    All through this time I was being given T3/liothyronine alone. Lot of people on the forums would love this, but it didn't ever agree with me. At the same time, for most of this time I think I never had a blood test to check it was alright. When I finally did get one, it turns out I was wandering around with a TSH of 60, while clinicians were saying I might be on too much (just because I had difficulty sleeping). This is because for the RAI treatment and scans you need to get all the thyroxine out of your system, and the T3 has a lower half-life. This means 10 days off your tablets. The first couple I found okay-ish, but after that it was back to bed, and it took me about 2 weeks to be getting up again, probably 4 to get fully back to where I was before.

    So my feeling was that clinicians didn't really have any interest of getting me back on my feet until after the all-clear. For me this was from April 2013-Feb 2014. There were no regular blood tests, or really anyone asking me about symptoms, it was all just about the radiation and getting rid of the cancer / destroying my thyroid.

    I don't know how typical my experience is. Lots of consultants roll their eyes as if I'm really atypical. But everyone I met in waiting rooms had been off work since the start of treatment, so 6-12 months. A consultant I met once says she always tells people it will be a year before they're better. In hindsight I think she meant a year before the cancer treatment is complete, with who knows what added on for getting your thyroxine medication up.

  • Sorry for the super-long post, I hope some is useful to your niece. I guess you touched a nerve for me with your niece having ambitious plans for the New Year. My life is completely different now, and the clinicians really talk down the significance of thyroid cancer as if it's not a big deal. It took me a long time for it to sink in that I was seriously ill, and it would be a long haul before I was fully better.

    Also mine didn't really mention the disruption of the RAI until I was fairly recovered from surgery. I actually went in for my first scan on a Thurs and Fri, and after looking at the results they said "Back into hospital on Monday as an inpatient for a week, and stay off the medication in the mean time". I had known that other places did this, but because it was NEVER MENTIONED to me as a possibility I'd assumed I'd be getting my appointment letter in the post weeks later.

    Another reason for the RAI, later down the line, is that having not a tiny scrap of thyroid in your body means that a simple blood test can be used to check if the cancer has returned - if you've got a cell in your body acting like a thyroid cell, and excreting thyroglobulin, that means it's a piece of thyroid cancer!

  • Thank you so much for sharing your experience. Do I understand correctly that she should expect to be incapacitated for a while following the RAI? How long did it take for you to get over it?

  • Teena, I think things are done slightly differently in the USA. I believe most patients are given Thyrogen a couple of days prior to RAI to raise their TSH. In the UK T4 is withdrawn 4 weeks prior and T3 2 weeks prior to RAI. As TSH has to be >30 you can imagine it knocks you out being hypothyroid and takes 3/4 weeks back on meds to get TSH back down.

    I was doing well on T3 only prior to RAI and went downhill rapidly when I was switched to T4. I had follow up RAI 5 months later and felt better when I was temporarily switched back to T3 then deteriorated again when I went back on T4. I'm quite certain that I had no ill effects from RAI, other than having to go hypo on each occasion. There are quarantine restrictions after RAI, usually 21 days, which restrict travel and contact with pregnant women and children under 18.

    I do think your niece may be pushing things if she expects to be well enough to travel long distance and care for her mother within 3 months of surgery and RAI.

  • Yes, I agree, I don't think I had much of a problem from the RAI itself. It's a strange week in hospital (I think in the US you can be sent home to sleep in your own bed when you take it), where you are pretty immobile, and get strange dreams, sore mouth, achy and yucky, and other bits and pieces. It's a nuisance if you usually have childcare responsibilities as you then can't be around them.

    The issue with it is that you have to wait for the medication to build up in your body again afterwards, and then you're going back onto a medication you've never had before so you're starting from scratch with finding a dose that works. As I said, I'm currently 10 months in without much joy.

    I also put on about 10lb each time my dose was put down to nothing. Eep! I met lots of people in hospital who hadn't gained much, though.

    I don't want to present it as a complete horror story, though. I've missed out on a lot of things I've wanted to do, but I haven't had any pain or serious discomfort, and the nature of brain fog and stuff I had meant I've felt quite relaxed and content. As long as she's got people to watch out for her and make sure she's getting meals, do a bit of cleaning, and lots of box sets of mindless shows to watch, it can be a fairly pleasant time. The hardest thing emotionally is if you're impatient to be getting better and keep being disappointed.

  • OOps, you asked about specific times. I think Clutter's timescale was similar to mine. Ten days of no medication prior to the RAI, about a week of that gets difficult. Then probably a scan before the treatment, which for me took two days, then they had it arranged so there was a weekend before I went in for the actual treatment. Treatment was over four days (so that's 15 days in total so far). Then you're put back on your medication, and it takes about a month for that to be settled again. Probably the first two weeks or so completely in bed.

    As Clutter says, if she gets thyrogen it will be slightly different as she won't have the ten days before without medication. Don't know if that puts her in the same position afterwards.

    But also I was given a scan 3 months later to confirm the thyroid was all gone / there was no cancer elsewhere. So if you do the maths on that I had about 6 weeks of 'wellness' between the two scans. I was then given a second scan, so that's the same story repeated.

    This also assumes she finds a medication dose that suits straight away. I was mainly in bed during this whole period. Also the timing of the RAI was that they gave it to me just as I was recovering from the surgery. I think it would be difficult to go back to work or similar at any part in the process, even if you were doing quite well on your medication.

  • Silver, I had to arrange dog care but otherwise the hospital quarantine wasn't bad and I just treated it like B&B and vegged out. The second dose of RAI was lower and I went home same day but with the same restrictions. I had a bad time on T4 but I'm much better on T4+T3.

    I think I'll start signing off to thyCa patients "May your thyroglobulin remain undetectable" :-D

  • Haha! That is a good sign off :)

    It's interesting that you were fine on the T3 and then struggled with the T4. I found the pure T3 awful, but I think I was on too little most of the time, so I might have been mistaken about what the real problem was.

    Each time I came off it I felt wonderful for a few days. Interestingly I just missed a whole day of my T4 and T3 mixture for an evening blood test, and felt great that day, too. I had been really run down but I came home and sorted out all the Xmas decorations!

  • Thank you for your story. I don't think she has been given many details about what to expect. I'm concerned she may not be prepared for what's to come.

  • Thank you so much. I would like to go with her to her next doctor's appointment. The only info I know at this point is they want to remove her thyroid and make her swallow RAI after which she must stay away from everyone for 3 days. She is not currently on any thyroid hormone medication.

  • Teenarock, this is a very good site for thyCa information

  • Thanks, I've just checked it out and signed up. You are very helpful.

  • Sorry, I only saw the second half of your post before I sent this. Thanks so much for all the information. I'm so sorry you have been so sick.

  • iam assuming your niece is fairly young. at the hospital where i work we have a younger persons cancer unit. do they have anything like this where your niece is treated? they also have a team of special nurses who are not only dealing with the patient but also family members such as yourself and friends of the person being treated.

  • Thank you for the suggestion. My niece is 25 years old. I think she will only be treated in adult wards.

  • I am sorry you've had such an awful time, made worse by no-one explaining clearly to you in advance what is most likely to happen: the aftermath and how to cope without a thyroid gland and sometimes difficulty with the medication.

    I hope you get really well quite soon.

  • Ten days ago I saw a post by Margo regarding the problem of over-diagnosing Thyroid Cancer, and Dr. Barry Peatfield writes in his book that he saved many of his patients from having their thyroid removed. I have met women who have had their thyroid removed (one even as a child) and no doctor told them what to expect in the aftermath - for these women it was the beginning of a long history of problems. One woman told me that after they had removed half of her thyroid they discovered that she did not have thyroid cancer after all which I found truly appalling considering how vital the thyroid is. Moreover, they were treated quite unsympathetically by the endocrinologists when they complained about their hypothyroid symptoms afterwards. I don't want to be alarmist but it seems it's definitely worth being absolutely certain that a removal of the thyroid is the only option, and definitely get as much information as possible. Here is the HU link (there may be more information if you click on Thyroid Cancer on the HU website:

    I also remember seeing a TV interview on YouTube with Dr. Amy Myers, a functional doctor in the US, where she said that she regretted having had her thyroid removed. I don't know the details as it doesn't affect me personally but it made me wonder... I don't have the web link but if you google 'Dr. Amy Myers Thyoid Cancer' or look on YouTube I'm sure you'll find her.

    Hope this helps.

  • Thank you so much for recommending this cautionary approach. I will suggest my niece gets a second opionion.

  • Just another thought: Regardless of what she decides to do, it's definitely worth building up her immune system - see e.g. Dr. Sarah Myhill's website (& also the external links at the bottom of that page) on cancer:

    Best wishes

  • Thank you. Yes, I agree. This is something I've learned as a Hashimoto's sufferer. The immune system is key.

  • Thanks MLML6, I agree. I wish I'd read up a lot more about thyroid removal and whether it was necessary before I'd had mine removed. Once I had had half of it out, I was far too weak to do any research about having the second half out, so I just went along with it. Also BEFORE I had it out my consultants were playing up the fear of cancer returning etc, but AFTER I'd had it out, and went along for RAI no one even mentioned the cancer. All they cared about was destroying the remaining thyroid cells!

    I did have a few talks with my consultant about preserving my thyroid, but she absolutely didn't see the point in that discussion! She thought the only downsides were the inconvenience of going in for surgery. Generally they thought you can live completely normally without a thyroid.

  • I am thirteen years post TT. Had small children at the time so it was difficult staying away from them. I am grateful it was found so early and that it could be removed (I had 2 ops as well). No-one knew I had anything particularly wrong with the thyroid, just a lump which kept coming and going and which I insisted could not be 'right'. One half was removed and found to have a papilliary tumour, after a few weeks I had the other half out which was the same, I understand it often is bilateral. Ups and downs with the meds started 150 mcg now down to alt 100 & 125. Generally fine however I have learned so much from this site that I now can take more control and ask for various tests. No-one said to watch calcium situation (often when taking higher doses of thyroxine, bones can be at risk) I subsequently went on to have a hip replacement (too young for this sort of thing, in my opinion)! The carpal tunnel and dizzyness and many other symptoms I now can see was a direct result of taking thyroxine. Well its necessary, so I get on with it. Some opinions state thyroid cancer should be left well alone because usually people pass on through something else rather than the thyroid cancer which usually (depending on type) is very very slow growing. However if I knew it was there I probably could not just say "Well leave it" and hope for the best. There is life after TT - a good life however you need to keep an eye on your general health as the thyroid gland is such a very important gland and affects so many aspects of health. This site will educate you on what to look out for. Its a very valuable site to have access to. .. and I am grateful it exists to help us all.

  • Thank you Pepekins. It's unbelievable just how many things are affected by our thyroid and how cavalier the doctors are about it.

  • Teena, about forty years ago my niece who was I her early twenties found a lump in her throat, she was breast feeding at the time and left 'the cyst' until she stopped so about a year later they found the cyst was malignant and did a total thyroidectomy. I remember her saying at the time removing thyroid tissue isn't all that straightforward which was why like your niece she had radioactive iodine.

    It was a long time ago but I remember she was kept in hospital while she was having it because she took her OU books in in plastic bags, I can't remember how long She was in for though. Since then she has had no other illnesses and has been very healthy, she is incredibly active, serious swimming, cycling, camping, rock / mountain climbing, long distance hill walking - she has climbed all the munoes in Scotland , she has sailed all around the Mediterranean, and crossed the Atlantic - all powered by thyroxine. I remember at the time though she used to get very anxious when it came to time for her check ups although the intervals between them grew longer and she felt better about them so you might find she gets stressed whenever she has to go back for a checkup. I think she had to stop her thyroid meds before her check ups but I'm not 100% sure about that.

    What I'm trying to say is, try not to worry too much ( easier said than done I'm sure)

  • Thanks so much for your reply. It is encouraging!

  • Yes I too have had lots of energy since TT thirteen years ago raised two children and run a business. It has not held me back as far as I know. However I had no idea losing my thyroid gland would impact on the rest of my body. I was never told, so had no idea at all. Subsequently I have had various problems, hip replacement etc because my calcium levels were low. That is why this site is wonderful, you will learn about all the things to keep a look out for. Isn't that great so you can pre-empt and sort out potential problems before they arise..

  • Thank you for sharing your experience. Every piece of information is a help.

  • Hi Teenarocks,

    I had half of my thyroid removed 28th February 2013 to remove follicular variant of papillary thyroid cancer. I'm assuming that they suspect she has either follicular cancer or papillary cancer, the most common thyroid cancers, or one of the variants. These cancers are called differentiated cancers because they act different to other cancers in that they take iodine from the diet to make thyroid cancer hormones, the body needs iodine to make normal thyroid hormones, and the cancer can do the same so that it grows. However, thyroid hormones are made in other parts of the endocrine system, liver and kidneys, and these organs use iodine to make the hormones so there is a chance that there can be traces of cancer causing thyroid cells in other parts of the body. Because normal tissue and the cancer tissue uses iodine taking radioactive iodine is used to kill all the normal and cancerous thyroid cells to reduce the risk of thyroid cancer returning.

    On another note, Thyroid cancer is very, very slow growing and if she wants to delay it's removal she can, and then have it removed when she returns from Hong Kong. This might be a better option because if she has her thyroid removed soon she will have to wait a few weeks for the thyroid hormones circulating in her body to disperse, the body has a monthly store of thyroid hormones. Plus she needs to follow a low iodine diet to make sure that the cancer cells suck up as much iodine to enable it to be killed. During this procedure she will have to stay in isolation away from all family and friends for a few days to reduce the risk of family getting a dose of radiation. Then once this is done she will have start taking thyroid replacement therapy, normally Levothyroxine, to stop the pituitary gland in the brain making Thyroid Stimulating Hormone. Thyroid stimulating hormone needs to be seriously suppressed because once levels start to increase thyroglobulin is produced and this stimulates thyroid cancer growth. Bearing in mind that it is nearly Christmas it will probably take at least 2 months of treatment and then she will need to be monitored with blood tests to make sure her TSH does not rise and check thyroglobulin levels. I was told that I'd had my cancer for at least 4 years and probably longer, so waiting a few months for treatment is not detrimental to her recovery.

    If she has any other thyroid cancer please PM and I'll give you as much information as I can to help her make a decision. With hindsight I would have waited because, even though I didn't need radioactive iodine treatment, my body has been plummeted into serious ill health and they cannot get my thyroid replacement medication at the right dose to make me better. I suspect the thyroid cancer hormones were keeping me alive because the left side of my thyroid is not working at all and I've probably had hypothyroidism for many years for me to develop cancer.

    Well, I'm signing off because I've got my toddler grandson staying over and he's causing havoc.

    Bye for now and good luck.

    TT xx

  • Thank you so much for your caring response. I am meeting with my niece tomorrow and I will convey your thoughts to her. I think she is being pressured into a quick decision and surgery and, like you, I suspect she has had this cancer for a very long time and a few more months will not make a difference. I'm not sure if they have told her what kind of cancer it is. I didn't realize there were different kinds. I think she needs more information to make an informed decision about her care.

  • I suspect it is one of the more common thyroid cancers and, if so, she will have time on her hands. I was pushed into surgery too quickly and I deeply regretted it. I had surgery within a month of the initial diagnosis and didn't feel prepared for the consequences of it's removal. I've been so ill since it was removed that, if waiting had been an option, I probably would not have had it removed at all and would be playing the waiting game until it definitely was necessary to remove it! Tell your niece to get as much information as she can on her condition before committing to surgery as preparation is key. I've done so much research since and if I'd been told the name of the cancer before I'd had surgery then my decision would have been very different. Unfortunately, the medical profession seems to think that papillary or follicular thyroid cancers are the best because they are treatable and that all you'll ever need afterwards is a little hormone pill to replace the hormones your thyroid makes. However, they cannot tell you how you will respond to treatment and that the synthetic hormone replacement might not work as well as anticipated. Your niece is welcome to PM me if she wants someone to talk to.

    All the best,

    TT xx.

  • The doctor is telling my niece he can't know what kind of cancer it is until after it is removed. Does this sound right to you?

  • Hi Teenarocks,

    Was the FNA inconclusive? My FNA was classified as a 5 and downgraded to a 4 meaning they were sure it was 80% cancerous. A classification of 5 means that it is definitely cancerous but they down graded mine to a 4 because they couldn't be certain what cancer is was. Most thyroid cancers (80%) are papillary or follicular but there are 4 variants to each cancer. Plus, there is medullary cancer, a hereditary cancer than runs in families, plus 4 variants and then there is anaplastic thyroid cancer the very rarest and worst form of all the cancers because there isn't a treatment to curb its aggressive nature, and this cancer normally kills within 12 months. This cancer is very, very rare and normally occurs in people aged 60+ years. The only way to be certain of the cancer type is to remove it and biopsy it during surgery, if at all possible. They couldn't biopsy my calcified nodule because it was so hard and such had to put it through a more rigorous biopsy over a longer period of time. I suspect that this may happen to your neice. How old is your niece? If she is under 45 it is more than likely papillary or follicular but a more detailed biopsy will be needed to see if there are any variants. If it is straight forward papillary or follicular then your niece's prognosis will be good.

    I hope this information helps.

    TT xx

  • Thank you so much for the information. I went with her to the surgeon today. He said it was Class 6 which is very definitely cancer. He said he is as sure as he can be that it is papillary. Our dilemma now is twofold: Can the surgery be postponed until March? Is surgery the only option? Also he said he would be removing the entire thyroid. Apparently removing one lobe is rarely done here in US. He said it would probably not be horrible to wait until March but he would be much more comfortable if she had the surgery now. He did not give us any other option. I think we should probably get a second opinion from another surgeon as to necessity and timing.

  • Over here in the UK we only have the scale going up to 5 and I thought that the US do the same. How old is your niece? Is she under 45? If so, it is more than likely papillary or follicular and these are very slow growing cancers so waiting a few months will be ok. I was told that I'd had my cancer for at least 4 years and probably longer (I suspect at least 10 years) and your niece might have had her's for a few years too, so a few months isn't very long in the big scheme of things.

    As you are in the US have you been on the US thyca website Inspire? There's loads of information on this website and lots of supportive members that can give you advice on getting a 2nd opinion and which surgeons, specialists and hospitals to attend. The website is I've found a very good penfriend on this site and we've supported each other for nearly 18 months now. Your niece might find someone in the same situation that doesn't live too far away that can help you.

    TT xx

  • She is 27. Thank you for the information. I recently joined inspire and will pass that website to her also. Bless you.

  • You're welcome.

    I think time is on her side, and at 27 it is probably papillary thyroid cancer. The Inspire website is brill and she will find lots of support and advice.

    My thoughts and prayers are with you and your family. God bless and night, night for now.

    TT xx

  • Just to sound a more optimistic note to the above posts.... I had a partial thyroid removal in May this year and no thyroid meds after. I was back at work in less than two weeks and felt fine. At a follow up I was told that they had found a follicular cancer and had to have total thyroidectomy. This was done in August, and I was put on T3 meds after. I was a little 'hyper', but was fine to back to work again within 2 weeks. I was told that as I was a low risk I did not have to have any radioactive treatment if I chose not too, so have avoided all the inconveniences described here. Now had my meds switched to T4, and, apart from a few days after the switch, have felt absolutely fine since. I have no idea if my experience is any more typical than the others described here!

    Just one note of caution- travel insurance can be real pain when you have any cancer diagnosis, and postponing treatment may make this more of an issue.

  • It's good to hear that, Monkey 65. I always wonder what percentage of people it is who recover quickly, and what percentage it is in the tail who take whoever much longer. Its good to hear there are some people in your situation!

  • Much as I love this site, and have had some very useful advice, it is by its nature the people who have had the problems who will be on here, so there is a risk that it can give a distorted picture of the general experience. Kind regards, Monkey.

  • Yes, I agree. I'm sure there are many success stories out there. But it's good to be informed of the risks so we know what to ask the doctors. Thank you so much for your replies.

  • I had TT 13 years ago and had no troubles at all. I did have the RI. Nobody mentioned grades or anything,I had a non-cancerous lump which kept coming and going and I was not comfortable ignoring it and insisted they sort it out.... So half the thyroid was removed and they found papilliary cancer then the other half was taken out also. I realise I was very naive. However over the years I have had various problems (which I now realise was the levothyroxine) I was taking. I am now very well indeed but this site is great because the info I have learned is amazing, so now I am prepared to ask for tests B12 etc if I feel it is necessary. As monkey65 says many people do just fine on Levo and are very well, but now and then when things perhaps go askew it is wonderful to have explanations and advice as to what to check.

  • Thank you Pepekins. I myself have Hashimoto's and a lot of trouble with it so I'm very worried about my niece. It's nice to hear that some people survive with not a lot of trouble.

  • Pepekins, thanks for your story. Could you please tell us a tiny bit about the other problems you've had?

    I'm no realising one of twith e issues with having no thyroid is that changes can happen during your life. My landlords, and elderly couple, both had their thyroid removed decades ago. She had an incident a few years ago where her requirement for thyroxine suddenly reduced by 50 mcg. I the time it took to figure that out she had to be hospitalised.

    Another friend who had a congenitally almost inactive thyroid has been mostly fine his whole life, now at the age of 30 he's become really weak and has spent a year going through the mill of endocrine issues and has just come out the other side being told no one knows what's wrong. He isn't a user of this site, and doesn't know much about his condition - I think his problem is that his dosage was reduced 3 or 4 years ago based on blood tests while he has no symptoms and was fine.

    But I don't know much about this so I'm curious about other people's experiences.

  • I do think you need less thyroxine as time goes on. I started with 150 daily and am now 125 x 3 and 100 X 4. I tend to sort myself out and then after a few weeks request a blood test to see how I am doing. I have always had loads of energy so I am very sorry for people who are not so fortunate.

  • Pepekins, thanks for your story. Could you please tell us a tiny bit about the other problems you've had?

    I'm no realising one of twith e issues with having no thyroid is that changes can happen during your life. My landlords, and elderly couple, both had their thyroid removed decades ago. She had an incident a few years ago where her requirement for thyroxine suddenly reduced by 50 mcg. I the time it took to figure that out she had to be hospitalised.

    Another friend who had a congenitally almost inactive thyroid has been mostly fine his whole life, now at the age of 30 he's become really weak and has spent a year going through the mill of endocrine issues and has just come out the other side being told no one knows what's wrong. He isn't a user of this site, and doesn't know much about his condition - I think his problem is that his dosage was reduced 3 or 4 years ago based on blood tests while he has no symptoms and was fine.

    But I don't know much about this so I'm curious about other people's experiences.

  • Other problems were being over-medicated so my whole body was vibrating (nobody knew what that was about). Painful muscles, hip replacement due to not being informed I had to keep an eye on my calcium levels and thinking milk and dairy would be good (its not) too acidic! Being undermedicated (GP did not realise what happens when you don't have a thyroid gland) and cholesterol soaring. Having osteopenia in my hips predominately due to being overmedicated. I am absolutely fine now, but through ignorance of the part my thyroid gland played in my health I have had many difficulties to overcome. With this site I am so grateful that sensible questions get sensible answers

  • Thanks for the reply! Oops, hadn't realised I sent my message twice.

  • I have no knowledge of thyroid removal because of cancer, so I cannot comment on that.

    I do have a family friend who had his removed for other reasons, and I have had neck surgery (not thyroid). The thought of doing a long-haul flight, then caring for someone else, so soon after the operation is something which I think your niece needs to consider very carefully. She needs to look after herself.

  • Thank you for your reponse. I agree. After reading all the responses I'm thinking she might be better off to postpone the surgery until she gets back. I'm waiting to hear what the doctor has to say about the type of cancer and how aggressive it is. With the little knowledge I have right now, I'm thinking she may have had this for a very long time and a few more months will not make a difference.

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