Last week, thyroid cancer nurses Geri and Ingrid joined us in the chatroom to answer your questions about thyroid cancer.

Topics included hormone levels, physiotherapy after surgery, radioactive iodine treatment, and the emotional effects of treatment.

Here are all the questions and answers from the chat.

The chat is now finished but you can still ask Geri a question by calling the Macmillan Support Line (0808 808 0000, Mon-Fri, 9am-8pm) or email your question.

I am 2 years on T4* and was told I’m high risk. My TSH has been roughly around 0.02 for about a year and a half and now it’s gone to 0.47. Is it bad for the TSH to keep going up so much and down again?

Geri: If you are high risk then you would be expecting that your TSH* (thyroid simulating hormone) would be in the lower ranges. Bad isn't the best word to use as many things can cause your TSH to go up, eg drug interactions. If you are taking other drugs you need to make sure you take thyroxine separate from other drugs.

Ingrid: If you are high risk, your TSH should be below normal.

Would eating differently for a few days over Christmas cause a rise in TSH from 0.05 to 0.47, with no change in dose?

Geri: There is some suggestion that a diet higher in soya and higher in fibre may cause changes in TSH, although the evidence here is very limited at the moment.

Thanks. I don't like my oncologist’s lack of concern. In my humble opinion, a rise from 0.05 to 0.47 is a huge gap, and that’s with a drop in FT4* from 27 to 22 in space of two months and then she said it’s just because of Christmas, that was her response. I feel that during appointments they don't explain things enough and I want to know such in depth details, but feel like I am a bother. I do have a right to ask and know, don’t I?

Ingrid: So sorry that you feel like 'a bother' to your consultant - please keep asking them the questions until your question have been answered satisfactorily.

Another chat guest: I always email my Macmillan nurse with my questions - she always discusses my queries with my consultant and one of them gets back to me.

My stimulated Tg* after RAI was 11. Can you say what the chances are of that rising? Have people in the past had levels like that and it has stayed stable? My unstimulated is <1 and all scans have been clear. I was told after RAI they would want a stimulated Tg of <0.1. It always worries me that it is 11 and that my TSH has gone a little haywire these last few months.

Ingrid: I think you said you had RAI three years ago? Has the Tg been stable since? For most people the Tg will go down slowly over time after a TT and RAI and it can take quite some time. If your Tg is stable and not rising, then that is good.

I had the RAI two years ago, three in September. My oncologist has CT scanned me each year since, plus an ultrasound. It just niggles at me, what does he expect to see?

Ingrid: The most important thing to look at is the trend of the Thyroglobulin – the most important factor is that it does not rise. This shows that there is no progression and whatever thyroid cells there might be left are not changing.  Your oncologist is making sure that he is not missing anything. This would be good practice, given that the stimulated Thyroglobulin was still detectable after you had RAI.

I had a TT (total thyroidectomy) last March. I have been taking 150mg Levothyroxine (Activis). After my consultant appointment last week, my oncologist said suppression is not low enough and has advised to increase to 175mcg daily. However Activis do not do 25mg, so I am worried that I may have to switch brands. Will this be ok?

Ingrid: Yes, it will be okay to switch brands. Some patients also mix brands - and sometimes it can require a period of time to find what brand suits you best.

I have a family member with anasplastic thyroid cancer. All websites note that survival rate is 2-6 months from diagnosis. Are there people who have survived longer that this and has anyone beaten it?

Ingrid: I am very sorry to hear of the diagnosis. The survival rate given on websites is a statistical average, the survival rate can be noticeably longer, and there can be treatment like chemotherapy or radiotherapy, but it won't get rid of the cancer. I am sorry that this is such a difficult situation for you.

Is it rare to get bone cancer after thyroid cancer?

Geri: It is possible to get spread to the bones, but this is very rare.

What do we have to look out for? What are the symptoms of thyroid cancer?

Ingrid: Mostly a lump in the neck is noticed in the first instance. Here’s some more information on symptoms and diagnosis of thyroid cancer.

I had my RAI (radioactive iodine) in March last year, following two operations to remove my thyroid, due to malignant papillary cancer. I went back to work straight after and got the all clear. Emotionally, I'm not good. I'm now on antidepressants and have just had seven weeks off work, as I just couldn't continue due to depression. I've gone back to work this week and yesterday I just sat and stared at a spreadsheet for the whole morning. I can't seem to get back into anything. I would rather be at home where I feel safe. Am I normal?

Geri: Sorry to hear you are struggling emotionally with things. It’s well known that having an episode of depression is more common in people who have had cancer than the general public. Getting back to some sort of normality and struggling with depression is really difficult, so well done for managing to get back to work.

Our information on your feelings after cancer may help to show that you are not unusual.

Are you getting help other than the antidepressants?

No, no other help at the moment.

Geri: Some form of counselling or talking therapy may be helpful. You should ask your GP about it. Most oncology centres have psycho-oncology services set up to help people deal with emotional fallout of cancer and its treatment - it may be worth asking for a referral from your oncologist.

Ok thanks. I've no appointment in the pipeline with my oncologist, only an appointment with surgeon in June. Can I just phone the hospital and ask?

Geri: You could phone the consultant’s secretary and ask if the consultant could do this without seeing you. I am happy to talk this over with you some more on the phone, too – you can call the Macmillan Support Line to be put through to me (0808 808 0000).

I have just had a diagnosis of thyroid cancer on Friday. I see the consultant next week. I feel a little in limbo. What things should I be asking?

Ingrid: How was the diagnosis established? Did you have investigations or a lobectomy? Are you seeing a surgeon or oncologist next week? The questions will depend on who you see and what you had done. Which type of thyroid cancer have you been diagnosed with?

I have papillary thyroid cancer. I am embarrassed to say I'm not sure who I'm seeing - I didn't take anything in at all after I was told I had cancer.

Ingrid: It’s very understandable that you couldn’t take anything else in at that point, so please don’t be embarrassed. I am assuming that you had your thyroid gland removed and are seeing the oncologist. They will discuss what they found during surgery and the next steps for you.

For most patients this will mean radio iodine ablation to remove any potential thyroid cells that might be left after surgery (there always will be some left as the thyroid gland is attached to so many structures in the neck). This will allow you also to be monitored in the future with blood tests, which are a very sensitive way of assuring that all is well and remains well.

Some patients can be offered a trial which can be either radio iodine ablation or a watch and see approach.  The Cancer Research website has some more information about this trial

I have a decent enough understanding of the guidelines for TSH suppression and recommended levels, but I’m still vague on what the ideal range for T4 level is. Whilst I appreciate that for each person the best T4 level may be different, what is the recommended T4 range? Also, I am over 5 months post thyroidectomy and four months post RAI and I’m still really struggling with my fatigue levels- is this likely to be a result from treatment or due to medication? Thanks for doing this chat.

Ingrid: What your consultant will look at is the TSH suppression, which, at the early stages (as you are) should be lower than the normal range. The T4 level will be reasonably high in your blood because you are taking a fair amount of T4 to suppress the TSH. So there really is no right or wrong level as such for the T4.       

The level of the TSH suppression might be adjusted in the future depending on your personal situation – e.g. if you fall into a ‘low risk’ group, the TSH will eventually be less suppressed.

I am sorry that you are feeling so fatigued - unfortunately this seems to be an experience for a lot of patients. The reasons are that you’ve had a fairly big operation, and also because your body cannot make Thyroxine on demand as it needs it now. It has to depend on the Thyroxine which you are taking at a certain level. Over time this should definitely get better, the better your levels are adjusted.

There are ways how you can try and work around the fatigue – here’s a link on coping with fatigue.

I was just wondering how long it will take for my scar to stop hurting? I had my final completion removal in October and it's still very sore.

Geri: Pain after surgery is a very individual thing and varies from person to person. It will depend on the extent of your surgery, any nerve involvement, and how quickly you heal as an individual. Some people will feel better after just a few weeks, while others may be sore with movement hindered for much longer. Are you taking pain killers? You could speak to your consultant and ask to be referred for some physiotherapy, as this may help.

No, I've just been suffering in silence as I wasn’t sure what was and wasn't normal. Would my GP be able to recommend something?

Geri: Sorry to hear that. You could take some regular paracetamol and ibuprofen every day for the next week to see if that helps. You can do this without needing to see the GP. A referral to a physio would be a good idea if the pain killers don't help. Your GP or consultant can do this. It would still be worthwhile seeing the GP so they know what is happening with you.

Another chat guest: I had my surgery in Nov/Dec 2013. I had a total thyroidechtomy, left and right neck dissection. It took a good few months to get back to normal.

I got my surgery booked in yesterday to remove half my thyroid. Because the FNA was 3f, he says there’s a 20% chance of needing the other half out. The FNA result was borderline cancerous - does this mean it contains cancerous cells or that it could do?

Geri: Sorry to hear that you are awaiting surgery. Unfortunately the FNA doesn't always give definite results and there can be a number of reasons for this. They may not have got enough cells, or the cells don't look like normal thyroid cells but not clear enough to be cancerous.

Doctors will also take into account the results of the ultrasound and how normal or abnormal things looked. It’s difficult when you don't get straightforward answers, and with thyroid cancer, things are not always straightforward. Hopefully you won't have too long to wait for a definite answer.

My partner had a total thyroidectomy and left side neck dissection in November for papillary thyroid cancer. He is suffering with his left shoulder and arm, as he cannot lift it much. There has been no mention of physiotherapy and I was wondering if we should get this through the hospital or through the GP?

Ingrid: Yes, it will be very helpful for your partner to get physio - try and get it wherever you can get it first. It might be worth asking both your consultant/hospital team and your GP to see who can refer your partner sooner.

Another chat guest: I think anyone who has had a TT should see a physio, as you become so guarded about moving your neck. I had my main neck muscle removed with neck dissection, so I saw a physio right after surgery. 

Another chat guest: I couldn't lift both arms above shoulder height and my neck was very stiff. Physio helped a lot.

Could I ask if there have been any cases of iodine 131 treatment causing early menopause? Or is it more likely to be just the general medical impact of thyroid cancer?

Geri: Radioactive iodine exposure for thyroid cancer therapy appears to cause short-lived menstrual irregularities in approximately 30% of patients and may be associated with an earlier age of menopause.

My thyroglobin is slightly elevated even after RAI 123 scan, plus I've found more lumps. I've just had an FNA* and am awaiting results. Is it possible for the cancer to return? The scan was clear, by the way, but it's three months since, and I'm not sure why the lumps would be there.

Geri: The risk of recurrence is different for everyone. Some people have a very low risk and others have a higher risk of the cancer returning. It all depends on how big the original tumour was, if you had any lymph node involvement, if any of the cells looked unusual or different under the microscope. The doctors take all these things into account when judging people’s individual risk.

I’m not sure if this is a discussion your doctor has had with you or not? So, yes it’s possible for it to come back, however even if it does it can potentially be cured, unlike some other cancers. If you are feeling anxious and want to talk I am available on the helpline.

How soon after surgery should radiotherapy start? How soon after that can radio iodine start?

Ingrid: Could you please just clarify whether the plan is for external beam radiotherapy or radio iodine only?

Both is planned.

Ingrid: Is the plan to have radio iodine first? That can start about 4-8 weeks post surgery - it works in the body for several months until it has done all it can. But if external radiotherapy is planned as well it will be best to discuss with your consultant how soon he will give it. If external radiotherapy is planned first, then again that could be started within several weeks of surgery.

*Jargon-buster

T4, otherwise known as thyroxine, is one of the hormones made by the thyroid gland. When the thyroid gland has been removed, T4 is replaced by taking a synthetic alternative called levothyroxine.  Read more about thyroid hormones.   

TSH stands for Thyroid Stimulating Hormone. TSH activates the thyroid gland to produce thyroid hormones. When you have your thyroid removed due to cancer, your doctor will prescribe enough levothyroxine to replace what you’ve lost and to keep your TSH levels below normal. This is to prevent the cancer returning. This is referred to as TSH suppression.

FT4 is Free T4. T4 circulates in the blood in two forms - T4, which is bound to proteins, and FT4 which is free, and not bound to proteins. The FT4 measurement is important in determining how well the thyroid is functioning. Read a clear but slightly more in-depth explanation of thyroid hormones

Tg stands for Thyroglobulin. This is a protein produced by normal and cancerous thyroid cells.

 FNA stands for Fine Needle Aspiration. It’s one of the tests used to diagnose cancer. Read more about investigations for thyroid cancer.

More useful links

Current research into thyroid cancer

Low iodine diet sheet

Weight management after cancer

Adjusting to life after cancer

Anaplastic thyroid cancer

Medullary thyroid cancer

Worries about recurrence

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