Thyroid Cancer Reoccurrence?: I'm having a bit of... - Thyroid UK

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Thyroid Cancer Reoccurrence?

DarkStar85 profile image
35 Replies

I'm having a bit of a panic. Had my thyroid panel done through medichecks with THYROGLOBULIN of 12. Had a TT for papillary thyroid cancer 13 years ago when I was 26. I was discharged from oncology 2 years ago and thyroglobulin not been checked since. I was always told it should be undectable. Should I be worried? Also T4 is high. I will attached results. I'm embarrassed that I should be more educated in interpreting my results after all these years. Test was done 11am fasted. Any help greatly appreciated, I will call GP tomorrow.

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DarkStar85
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DarkStar85 profile image
DarkStar85

Other hormone results. I have endometriosis and just had a laparoscopy excision with multiple cysts removed.

Results
Buddy195 profile image
Buddy195Administrator in reply to DarkStar85

Are you still taking 150mcg Levothyroxine, as per your post 3 months ago or did you reduce as your FT4 was over range then?

DarkStar85 profile image
DarkStar85 in reply to Buddy195

Yes I'm still on 150 levothyroxine. I plan on reducing to 125 asap.

helvella profile image
helvellaAdministratorThyroid UK

I suspect some confusion here.

That test you have posted is for Thyroglobulin antibodies.

The cancer-related test is for Thyroglobulin itself.

Look at this link - which shows both (Thyroglobulin antibodies are under Thyroid antibodies):

labtestsonline.org.uk/searc...

DarkStar85 profile image
DarkStar85 in reply to helvella

Thank you so much, you've put my mind at ease. I see the difference now. I need the Tg test. Thanks again.

helvella profile image
helvellaAdministratorThyroid UK in reply to DarkStar85

You are not the first, and I'm quite sure won't be the last, to have been somewhere between concerned and scared stiff due to that confusion. :-)

DarkStar85 profile image
DarkStar85 in reply to helvella

Thanks for replying so quickly. I feel silly now! Do you know where I could get a thyrogloblin test? Only the antibody test is coming up on my searches.

helvella profile image
helvellaAdministratorThyroid UK in reply to DarkStar85

Can you not get that through the NHS? E.g. your GP.

I'm afraid I'm simply not very aware of where you can buy specific tests other than the absolute basics.

Buddy195 profile image
Buddy195Administrator

It is recommended that FT4 is within range, so I would reduce to 125mcg asap.

Your thyroid antibodies are within range (as highlighted in green), so are not indicative that your thyroid condition is autoimmune (aka Hashimotos).

As FT4 your is over range and FT3 low in range, you are likely a poor converter. Have you seen an endocrinologist recently? Combination treatment may be an option in the future ( to raise FT3 to an optimal level once FT4 is within range) and you may want to see an endo willing to prescribe a Liothyronine trial (to be taken alongside a lower Levo dosage)

However, as a first step, I would look to get FT4 within range by reducing Levo, then reassess FT3 levels/ possible conversion issues.

Looking at your post 3 months ago, did you start HRT?

Have you tested key thyroid vitamins (folate, ferritin, B12 and vit D)? Having these optimal supports thyroid health.

DarkStar85 profile image
DarkStar85 in reply to Buddy195

Thanks for your reply. I've been wondering if I should be taking T3 since I feel fatigued and awful all the time no matter the dose of levo. I've not seen an endocrinologist in years and was just looking up Drs at my nearest private hospital. Is there a list of preferred Drs I could access? I'm in Glasgow. Thanks again.

Buddy195 profile image
Buddy195Administrator

A list of thyroid -friendly endos (NHS and private) can be requested by contacting TUK

thyroiduk.org/contact-us/ge...

With any recommendation that you get, it is advisable to complete further research yourself before making a decision.

You could start a new post asking for endo recommendations in Glasgow, willing to support a FT3 trial. Replies will need to be via private message, as per forum guidelines.

DarkStar85 profile image
DarkStar85 in reply to Buddy195

Thank you, I've made the request. I appreciate your help.

Buddy195 profile image
Buddy195Administrator in reply to DarkStar85

I would look to get FT4 in range as a first step, repeat blood tests on reduced 125mcg dose after 6-8 weeks.

We advise you have an early morning blood test and take Levo after the blood draw. This is a patient to patient tip (gives highest TSH) not one advocated by many medics!

Do share your key vitamins with us. Please remember when medics say within range/ normal, this may not be the same as OPTIMAL.

Jaydee1507 profile image
Jaydee1507Administrator

Just checking when you last took Levo before this test?

If you take Levo just before the test it will show as high as you then end up measuring what you have just taken as opposed to stable blood levels.

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

Have you had key vitamins checked recently and what were the results?

What supplements do you take?

We need OPTIMAL vitamin lev els for our thyroid hormone to work well.

DarkStar85 profile image
DarkStar85 in reply to Jaydee1507

Thanks for this. I took 150mg of levo at 7am and bloods at 11am fasted. Do you think that could have skewed the results? It's unreal that I've lived without a thyroid for 13 years, 100s of blood tests and no Dr has ever said to get the blood before 9am fasted and no levo for 24 hours. I also feel silly I didn't know this after all these years!

I had some vitamin bloods done a few months ago all were within normal. My iron is usually quite low. I take a bunch of supplements for endometriosis- omega 3, multi vitamin, DIM, NAC, calcium D Glycinate. Also take Utrogestan and famotidine. I must be rattling with pills 🤣

Jaydee1507 profile image
Jaydee1507Administrator in reply to DarkStar85

Its really only when things aren't going well that we investigate reasons why and learn new things.

Definitely taking Levo 3 hours before your test will have falsely elevated your FT4. Your TSH would have been a little higher had you tested 2 hours earlier at 9am.

Can you do a retest under the conditions I have suggested?

Patient groups for thyroid have better detail information than GPs as a rule.

Can you share your vitamin results? Normal isnt good enough, they need to be OPTIMAL.

Multivitamins arent recommended for a number of reasons, including containing iodine which isnt recommended, containing iron that will prevent you absorbing the other vitamins, usually poor quality, inactive vitamins in too lower dose to raise your level to optimal.

DarkStar85 profile image
DarkStar85 in reply to Jaydee1507

I'll have a look for the blood results. What supplements would you recommend? I'll need to retest levels I'll have a look at medichecks.

Jaydee1507 profile image
Jaydee1507Administrator in reply to DarkStar85

When you have the test results make a new post and members can make suggestions.

Sweeneythyca profile image
Sweeneythyca

As a thyca patient I am confused with the advice given re: thyroglobulin antibodies. Of course it depends on TT or partial but,While this may be a test occasionally used to detect autoimmune thyroiditis, it is more common to use this test to determine if treatment for thyroid cancer has been effective or not. Providers often use TgAB as a tumor marker because your body will only continue to produce TgAB's if you still have thyroid tissue in your body. Thus, after thyroid cancer treatment, the goal is to have no TgAB's in your lab work after your thyroid has been removed.

helvella profile image
helvellaAdministratorThyroid UK in reply to Sweeneythyca

I did link to the LabTestsOnline site which adds considerably more. But the actual test done is intended to identify antibodies for autoimmune reasons. The last paragraph does discuss the cancer monitoring but it it possible to have positive TGab without cancer recurrence.

What does the test result mean?

Mild to moderately elevated levels of thyroid antibodies may be found in association with a variety of diseases, and must be interpreted in combination with symptoms and other thyroid hormone tests to diagnose autoimmune thyroid disease.

Thyroid antibodies can sometimes be slightly increased in thyroid cancer, but this is a rare cause of detectable thyroid antibodies.

Significantly increased thyroid antibody concentrations most frequently indicate thyroid autoimmune diseases such as Hashimoto thyroiditis, primary hypothyroidism, and Graves disease. In general, the higher the level, the more likely autoimmune thyroid disease is present. If present in the mother, thyroid antibodies are associated with an increased the risk of hypothyroidism or hyperthyroidism in the foetus or newborn.

Thyroid antibodies can also be found in other autoimmune disorders, such Type 1 diabetes, pernicious anaemia, rheumatoid arthritis, and SLE.

A certain percentage of patients who are healthy may be positive for one or more thyroid antibodies. The prevalence of thyroid antibodies tends to be higher in women and increases with age. If a person with no apparent thyroid dysfunction has a thyroid antibody present, the doctor will track health over time and monitor thyroid function tests (TSH, FT4 and sometimes FT3). While most will never experience thyroid dysfunction, a few patients may develop it in the future.

Monitoring of thyroid cancer

TgAb and thyroglobulin can be used in in the monitoring of certain types of thyroid cancer. TgAb can sometimes, for technical reasons, interfere with the test results for thyroglobulin which means that both tests should be requested and interpreted together. If TgAb and thyroglobulin are being used to monitor thyroid cancer, then high levels or increases over time may lead to further investigation of how well the treatment is working or whether the cancer has reoccurred. If levels are falling and/or have fallen to low or undetectable levels, then it is more likely that treatment has been effective.

DarkStar85 profile image
DarkStar85 in reply to Sweeneythyca

I had a TT, radical neck dissection, dozen lymph nodes removed. 5cmx6cm tumour no spread elsewhere. Then Radioactive iodine. Do you think the tg antibodies of 12 is of concern? I was discharged from my annual check up from oncology as I was past 10 years and 'cured' zero care given and not even a plan to give me that peace of mind and check the thyrogloblin annually. I've sent all the results to my GP but they are hopeless with anything thyroid related.

Sweeneythyca profile image
Sweeneythyca in reply to DarkStar85

Personally that would be an issue for me and I would push for further monitoring, my own Tg has mercifully stated at 0.20 and any change in that would rattle me. Sorry I don't mean to be alarmist at all. It would just be enough in the circumstances to ask for further investigation. It's your health, never let them fob you off or make you feel a nuisance. I don't care if I come across as neurotic to the drs, I have good reason to, as do you. X

DarkStar85 profile image
DarkStar85 in reply to Sweeneythyca

I'm on the urgent list at GP surgery today. It's not straight Tg it's TgAb so I think it's less of a concern. I'll still be pushing for straight Tg test. How long are you post surgery? I'm 13 years now, I was monitored until 11 years then I was kicked out. They won't try that again now!

Sweeneythyca profile image
Sweeneythyca in reply to DarkStar85

I'm 5 years post op.... I have both tested and always insist. X

pennyannie profile image
pennyannie

Hello DarkStar :

Just to say my blood test results for these 2 antibodies are identical to yours -

and presume my thyroid rendered totally disabled as I had RAI thyroid ablation for Graves Disease back in 2005.

I have never had cancer and believe these readings of no consequence.

Sweeneythyca profile image
Sweeneythyca

My endo tests both to keep a track on my markers after TT for thyca.

DarkStar85 profile image
DarkStar85 in reply to Sweeneythyca

Is that privately? You're lucky! I was discharged and not even given the peace of mind of an annual blood test.

Sweeneythyca profile image
Sweeneythyca in reply to DarkStar85

I have bloods about every 4 months (NHS) my endo is magnificent and likes to keep track of it all, also I am neurotic about something being missed (as was my diagnosis for some time) I simply insisted that I need thyroglobulin tested every 6 months. Push push push

DarkStar85 profile image
DarkStar85 in reply to Sweeneythyca

You're lucky to have a dedicated endo thats fab! I've got a GP appointment for bloods today and I've been on the phone to my former oncology care team so I'll be getting the thyrogloblin asap. I'll be demanding I get my annual check again x

pennyannie profile image
pennyannie

Hey there again :

So your T4 is a false high as you took your Levothyroxone a few hours before the blood draw and we really do need to also see your ferritin, folate, B12 and vitamin D results and ranges to offer considered opinion on your thyroid function results.

No thyroid hormone replacement works well until these core strength vitamins and minerals are up and maintained at optimal - and with some NHS ranges too wide to be sensible - we can advise ' where optimal sits ' :

We generally feel best when on T4 only when the T4 is in the top quadrant of its range with the T3 tracking slightly behind at around 60/70% through its range.

A fully functioning working thyroid would be supporing you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg -

with T3 known to be around 4 times more powerful than T4 :

T4 is a pro-hormone and needs to be converted in your body into T3 the active hormone that runs all your bodily functions, from your physical ability through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism with the thyroid the controller of the supply and the ratio of T3 and T4 delivery.

Without a thyroid it is essential that you are dosed and monitored on your Free T3 and Free T4 readings :

Some people can get by on T4 monotherapy - Levothyroxine :

Others find that T4 seems to stop working as well as it once did and that by adding in a little T3 - likely at a similar dose to that their thyroid once supported them with their T3/T4 hormonal balance is restored, their metabolism kick started, and their health and well being restored.

Others can't tolerate T4 and need to take T3 monotherapy - Liothyronine.

Whilst others find Natural Desiccated Thyroid ( NDT ) hormone replacement restores health and well being which contains all the same known hormones as that of the human thyroid gland and derived from pig thyroids dried and ground down into tablets referred to as grains.

Currently in primary care only T4 is prescribed - though roll back 20 odd years and your doctor had all these treatment options in his box of tricks if Levothyroxoine - the cheapest option, didn't restore your ' you ' and your health and well being.

Nowadays you will need a referral to a NHS endocrinologist to be assessed as to you medical need for anything other than T4 - and it has become something of a post code lottery with CCG/ICB financials constraints rather than medical needs operational in some areas of the country.

DarkStar85 profile image
DarkStar85 in reply to pennyannie

Thank you for the detailed response. I have identified a private endocrinologist I will make an appointment to see re the T3. I suspect I should have been on this years ago as I've never felt 100% after TT.

pennyannie profile image
pennyannie in reply to DarkStar85

Yes - it seems a common issue :

It might be a good idea to start a new post on here -

asking for feedback on Dr ???? - as it might save you some time and money ??

We are not allowed to openly discuss any medical professional - but we do have the facility of Private Messages - look for a Chat icon - looks like a paper plane - on my laptop - its on this screen top right alongside the Alerts icon - .and this will light up if anyone replies to you re a PM :

Also you may like to email admin @thyroiduk.org as they hold a list of patient to patient thyroid specialists and sympathetic endo's - NHS and private - it's only as good as us patients updating it - but it is better than nothing and a start in the maze !!

Thyroid UK is the charity who supports this forum - and to whom many of us are totally indebted and why we come back on to give back to others who are struggling to get heard and get better thyroid health.

P.S. Is it worth first talking with your doctor and seeing what s/he says ?

I don't know for sure but I thought Scotland was not ' as much an issue ' as England is in the prescribing of T3 thyroid hormone replacement.

Also before you see someone privately suggest you run the blood tests the correct way and include the ferritin, folate, B12 and vitamin D so we can advise you first so you will be informed and more able to advocate for yourself when you do get see a specialist.

Wwwdot profile image
Wwwdot

Hi DarkStar

Well done for asking and checking and please don’t feel silly or apologise. It is very natural to enjoy the experience of feeling well in post recovery times and to put consideration of difficult matters out of your mind. I know I certainly do but that’s the beauty of this forum it’s full of ordinary folk who have an extraordinary gift of being generous with knowledge and support.

So glad you feel reassured.

🤗🤗🤗

DarkStar85 profile image
DarkStar85 in reply to Wwwdot

Thanks. I've never felt 100% after TT a day often wondered about T3. With 3 yound kids life is busy and exhausting! Hopefully I'm on the road to getting it sorted

DarkStar85 profile image
DarkStar85

Quick update. I had my bloods done back with oncology today Tg only. Specialist nurse said if the number is the same as medichecks TgAb of 12 then it is a reoccurrence. Now i need to wait a week or 2 for results. My only hope is the medichecks results are a lot of sh*t as my GP redone tsh and t4 both which were hugely under the medichecks results. I won't be going near medichecks again.

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