Thyroid Cancer Questions: Ask Dr Tom
If you have a question, Dr Tom Cawood may be able to help. Your own doctor, who knows your situation, will almost certainly be able to provide better information than any on-line forum. But you may have a burning question on your mind! Please provide some background to your question and, while Dr Tom can't promise the ideal answer, he promises to do his best.
If you have an experience or story that may help others, we'd love to publish it on this website. Please email us in the form below.
There are some previous Q & As posted below - we hope they are helpful.
If you have a question, Dr Tom Cawood may be able to help. Your own doctor, who knows your situation, will almost certainly be able to provide better information than any on-line forum. But you may have a burning question on your mind! Please provide some background to your question and, while Dr Tom can't promise the ideal answer, he promises to do his best.
If you have an experience or story that may help others, we'd love to publish it on this website. Please email us in the form below.
There are some previous Q & As posted below - we hope they are helpful.
Q:
Pippa asked:
Hello Tom I found your link on the Thyroid Uk website and I'm just looking for you're opinion and advice. I've been suffering from Hypo symptoms for about 2 years, last April 2015 I developed a lump on the right hand side of my thyroid. I got a huge shock due to the fatigue symptoms I'd been experiencing. By the time I saw my GP it had reduced quite considerably in size, I could still feel it although the GP said he couldnt and told me to monitor it. A Similar pattern has followed a few times but never as large. In September 2015 I was back at GP bloods TSH 5.8 and in Jan 2016 bloods TSH 10.45. Speaking to a different GP this week I've discussed again re the lump and my change in TSH but they don't seem interested and he said it was 'probably' a cyst. He's put me on 50mcg of Levo. In your opinion should I just leave this or would you recommend I push to have this investigated by a specialist. I live in Newcastle Upon Tyne & I'm struggling to find a highly rated Endocrinologist. Thank you very much Pippa
A:
Thanks for your question regarding your possible thyroid lump and what best to do.
With all such replies I have to be careful to state that I can only give general advice, and your local health care professionals are in a far better position to give the right advice, tailored to you, with them knowing your full medical background, being able to examine you and having the chance to talk things through with you. I'd suggest going back to your GP to discuss things further. That said, I hope the following is helpful:
There are a number of different ways to approach this sort of thing, probably because there is no single right answer. I know this sounds a bit grey, but it relates to the fact that the vast majority of thyroid lumps are benign (about 95%), and so if you over-investigate people for thyroid lumps, you can end up doing them more harm than good (due to a number of people having operations done that turn out not to have been needed). Also the outcome of treatment for the 5% of thyroid lumps that turn out to be cancerous is usually very good, and because they are usually so slow-growing often there is little, if anything, lost by the diagnosis being made some time down the track. Therefore its generally best to only investigate those that have a higher than average chance of having thyroid cancer.
The usual path of what to do in your situation of having a probable thyroid lump that has varied in size, and may or may not be palpable at the moment, varies from country to country. Where I work (New Zealand) we would not recommend any further investigation unless the lump was clearly palpable (in which case we would then suggest getting a biopsy sample of the lump (a fine needle aspirate)). In the USA they tend to be more enthusiastic with investigations, and they would probably recommend an ultrasound scan of your neck, and then do a needle test of any obvious thyroid nodules. This tends to lead on to further tests because up to 50% of the normal population has one of more thyroid nodule when you do a scan looking for them. I'm not sure what the usual path would be in the UK, and guess it might vary from place to place and person to person, given that there is debate about what is best to do.
In your situation (assuming nothing in your personal or family history that makes you at higher risk than average of thyroid cancer) the first thing to do is make sure your thyroid hormone replacement is adequate (aiming for TSH in the local normal range, which is likely to be somewhere around 0.4 to 4.0 miu/L). From your current TSH of 10, that suggests you need some more thyroxine. Most people who don't have any functioning thyroid gland tend to need around 100micrograms per day.
Having a thyroid lump that fluctuates in size is usually due to some fluid in the nodule, which subsequently gets re-absorbed, so I agree with your GP that a thyroid cyst could well be the cause, and that if it had reduced and was no longer able to be felt, then probably best to watch and wait.
Most thyroid lumps that are cancerous tend to get steadily larger, making yours less likely to be cancerous. That said, having a high TSH is a very slight risk factor for a thyroid nodule being cancerous. Overall your chance of having a thyroid cancer nodule remains very low (probably less than 5%). If it were me, I probably wouldn't do any further tests unless I could feel the lump, in which case I'd want a fine needle aspirate, and if that was inconclusive I'd then want to go on to have an ultrasound-guided fine needle aspirate. However, given that you are worried about the lump, you may want to be more pro-active, in which case I'd push for an ultrasound or at least push for referral to a local endocrinologist so they could take further details, examine your neck, and discuss what they think is best for you, and together come up with a suitable course of action.
I don't think you need to be overly worried about getting the best endocrinologist, as this is a fairly common situation, and any endocrinologist whom has been through UK training should be very capable of dealing with this, and your local hospital should be fine. If you are not overly impressed with that person, you could ask them when the American Thyroid Association guidelines relating to thyroid cancer were updated
(they were updated in 2015 - they can be found here http://thyca.org/download/document/409/DTCguidelines.pdf (see page 19, where it recommends doing an ultrasound). A good endocrinologist dealing with potential thyroid cancer should know about these guidelines.
I hope this is of some help.
Please feel free to get back in touch if you have further questions.
Good Luck
Dr Tom
Pippa asked:
Hello Tom I found your link on the Thyroid Uk website and I'm just looking for you're opinion and advice. I've been suffering from Hypo symptoms for about 2 years, last April 2015 I developed a lump on the right hand side of my thyroid. I got a huge shock due to the fatigue symptoms I'd been experiencing. By the time I saw my GP it had reduced quite considerably in size, I could still feel it although the GP said he couldnt and told me to monitor it. A Similar pattern has followed a few times but never as large. In September 2015 I was back at GP bloods TSH 5.8 and in Jan 2016 bloods TSH 10.45. Speaking to a different GP this week I've discussed again re the lump and my change in TSH but they don't seem interested and he said it was 'probably' a cyst. He's put me on 50mcg of Levo. In your opinion should I just leave this or would you recommend I push to have this investigated by a specialist. I live in Newcastle Upon Tyne & I'm struggling to find a highly rated Endocrinologist. Thank you very much Pippa
A:
Thanks for your question regarding your possible thyroid lump and what best to do.
With all such replies I have to be careful to state that I can only give general advice, and your local health care professionals are in a far better position to give the right advice, tailored to you, with them knowing your full medical background, being able to examine you and having the chance to talk things through with you. I'd suggest going back to your GP to discuss things further. That said, I hope the following is helpful:
There are a number of different ways to approach this sort of thing, probably because there is no single right answer. I know this sounds a bit grey, but it relates to the fact that the vast majority of thyroid lumps are benign (about 95%), and so if you over-investigate people for thyroid lumps, you can end up doing them more harm than good (due to a number of people having operations done that turn out not to have been needed). Also the outcome of treatment for the 5% of thyroid lumps that turn out to be cancerous is usually very good, and because they are usually so slow-growing often there is little, if anything, lost by the diagnosis being made some time down the track. Therefore its generally best to only investigate those that have a higher than average chance of having thyroid cancer.
The usual path of what to do in your situation of having a probable thyroid lump that has varied in size, and may or may not be palpable at the moment, varies from country to country. Where I work (New Zealand) we would not recommend any further investigation unless the lump was clearly palpable (in which case we would then suggest getting a biopsy sample of the lump (a fine needle aspirate)). In the USA they tend to be more enthusiastic with investigations, and they would probably recommend an ultrasound scan of your neck, and then do a needle test of any obvious thyroid nodules. This tends to lead on to further tests because up to 50% of the normal population has one of more thyroid nodule when you do a scan looking for them. I'm not sure what the usual path would be in the UK, and guess it might vary from place to place and person to person, given that there is debate about what is best to do.
In your situation (assuming nothing in your personal or family history that makes you at higher risk than average of thyroid cancer) the first thing to do is make sure your thyroid hormone replacement is adequate (aiming for TSH in the local normal range, which is likely to be somewhere around 0.4 to 4.0 miu/L). From your current TSH of 10, that suggests you need some more thyroxine. Most people who don't have any functioning thyroid gland tend to need around 100micrograms per day.
Having a thyroid lump that fluctuates in size is usually due to some fluid in the nodule, which subsequently gets re-absorbed, so I agree with your GP that a thyroid cyst could well be the cause, and that if it had reduced and was no longer able to be felt, then probably best to watch and wait.
Most thyroid lumps that are cancerous tend to get steadily larger, making yours less likely to be cancerous. That said, having a high TSH is a very slight risk factor for a thyroid nodule being cancerous. Overall your chance of having a thyroid cancer nodule remains very low (probably less than 5%). If it were me, I probably wouldn't do any further tests unless I could feel the lump, in which case I'd want a fine needle aspirate, and if that was inconclusive I'd then want to go on to have an ultrasound-guided fine needle aspirate. However, given that you are worried about the lump, you may want to be more pro-active, in which case I'd push for an ultrasound or at least push for referral to a local endocrinologist so they could take further details, examine your neck, and discuss what they think is best for you, and together come up with a suitable course of action.
I don't think you need to be overly worried about getting the best endocrinologist, as this is a fairly common situation, and any endocrinologist whom has been through UK training should be very capable of dealing with this, and your local hospital should be fine. If you are not overly impressed with that person, you could ask them when the American Thyroid Association guidelines relating to thyroid cancer were updated
(they were updated in 2015 - they can be found here http://thyca.org/download/document/409/DTCguidelines.pdf (see page 19, where it recommends doing an ultrasound). A good endocrinologist dealing with potential thyroid cancer should know about these guidelines.
I hope this is of some help.
Please feel free to get back in touch if you have further questions.
Good Luck
Dr Tom
Q:
Jayne asked:
I had thyroiditis for 18 months. Had total thyroidectomy March this year. Told was cancerous. 1.5cm so radioiodine not required as guidelines have changed. Now on 150mg to suppress last blood TSH 14 which is why thyroxine increased.
Question: when should first scan be?
When will they test Thyroglobulin?
As feel very worried although consultant was positive.
Thank you for your help
Ps neck still feels tight and achy is this right?
A:
Dr Tom answered:
Thanks for your questions. The timing for post-operative scans and thyroglobulin is a bit variable, and depends a bit on whether they think you are low-risk for future problems, or higher-risk. From what you have told me it sounds like you would be low-risk, and in that setting most centres would do an ultrasound scan and thyroglobulin sometime between 6 and 12 months after surgery.
It takes some time for things to settle down after surgery, and so doing a scan too early can sometimes be misleading and cause unnecessary anxiety, hence the usual 6 to 12 months timeframe. Plus, in the very unlikely event of there being thyroid cancer cells left in your neck, these usually grow very very slowly and so there is no urgency to do tests, particularly if the results could be misleading if done too soon.
The thyroglobulin result needs to be taken with a pinch of salt, as there is almost always some thyroid tissue left after total thyroidectomy, so you wouldn't normally expect the thryogolbulin to be undetectable (at least not without radioiodine treatment). Its more the trend over time rather than the absolute level that is more important in those that have not had radioiodine.
I think its pretty normal to be feeling worried at this stage, even with your consultant being positive. Its still very new and raw for you. Usually with time, and the scans and thyroglobulin doing what is expected, that the worry levels can drop and you can think about it less. I guess all things are relative, and it's obviously better to be in a low-risk group and that your consultant is optimistic of a good outcome. Your consultant will likely have seen many similar cases before, and will be well-informed in his/her optimistic outlook for you.
I'd expect your neck to still feel a bit tight and achy. The muscles and connective tissue and skin are still busy repairing and remodelling. Important to keep things moving to allow the new tissues to learn how much they need to stretch so that they heel without neck restriction.
I hope this is of some help. I'd suggest writing down any specific questions you might have so that you can ask your own doctors (who know your health details well) can answer these properly for you when you next see them.