Thyroid cancer

[sidneymark70]

I have a close friend who’s just been diagnosed with thyroid cancer so is waiting for surgery. She has been told this is not the worst cancer to get and it will not kill her. So she is trying to be upbeat about it. Can you live normally without a thyroid please? I’d really like to give her some optimistic information. How long is the recovery time? Thank you

[jimh111]

Others with personal experience will reply soon no doubt. Just a FYI The Thyroid Trust have a couple of online meetings about thyroid cancer coming up soon thyroidtrust.org/events-lis... .

[cjrsquared]

it is true that the majority of thyroid cancer is very treatable. It is most likely that the surgery will be to have half or all her thyroid removed. She may also require the removal of lymph nodes, called neck dissection if there is local spread. The surgery is normally straightforward with an overnight stay in hospital, some soreness and advice not to drive for 7-14 days until one can turn one’s head freely. 2-4 weeks off work depending on the physicality of the job. If the cancer is contained entirely in the thyroid that may be the only treatment, but if there is any concern she may be offered radioactive iodine to kill any stray cancer cells.

It is very likely that her thyroid hormone levels are completely normal at present, and if so, she should take note of what is normal for her. This can be very important in titration levels once on synthetic hormone replacement. The standard treatment is levothyroxine (t4), an inactive form of the hormone that the body then converts into t3 the active form. Once commencing on levothyroxine it takes up to 6 weeks to reach a steady level in the blood. Your friend will probably be started on a dose of 1.6 micrograms per kilogram body weight with blood tests at 6 weeks. If she requires follow up radioactive iodine treatment it will be a different regime.

Many people do well on levothyroxine only but there is a significant minority who struggle to optimal levels and to feel well. There are quite a few things that influence how well an individual converts from the inactive to the active hormone, from Vit D, ferritin selenium levels as well as absorption across the gut mucosa. There is a lot of information on this site for her to read and learn later in her journey.

I think she needs to know that normal life is possible but to take it in stages and understand it takes time. Sometimes it is 2 steps forward and 3 back. She will need to be an advocate for her own health.

I wish her well.

[helvella Administrator]

Some people have been extremely upset when told things like "it's the best cancer" or even, as your friend, "not the worst".

That seems to minimise the fact that they have had a cancer diagnosis. And downplay the difficulties and unpleasantness of the treatment of the cancer. And ignore the issues of post-cancer treatments.

It can even seem to make people think that any upset, grumbles, difficulties they have, or moans they make, will receive retorts like "Just think yourself lucky you haven't got xxx cancer." Indeed, that might be how your friend actually feels. That she is lucky. But that doesn't mean she won't need lots of support.

It is good advice to ensure she gets her Free T4 and Free T3 tested now. They provide some sort of an indication of where will likely feel best in future when she is taking thyroid hormone medicine(s).

There are many who have had various forms of thyroid cancer and gone on to feel pretty well.

But it is important to understand that between now and then can be a hard road.

[SlowDragon Administrator]

Recommend she get FULL thyroid and vitamin testing done now BEFORE thyroidectomy

Helpful to see where results are now to compare with results once she gets on replacement thyroid hormones (usually levothyroxine only)

For full Thyroid evaluation she needs TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Frequently necessary to supplement to maintain GOOD vitamin levels on Levothyroxine

Low vitamin levels are extremely common when hypothyroid,

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

.

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

[waveylines]

Great advice already given. I echo the thought on being diagnosed with a cancer.... It's a terrible shock and will raise all sorts of questions for your friend. Whether treatable or not she needs lots support and reassurance. Her emotions are likely to be all over the place.I hope all goes well for her and I hope the road to recovery is as straight forwards as possible.

[Batty1]

”Best cancer to get” I think all of us who have had Thyroid cancer has heard this comment from professionals and everyone else … it’s an ignorant comment because nothing is easy about losing your thyroid its a stressful event and the gift that keeps on giving.

[Brightness14]

I had my thyroid removed back in 2015 it took just 6 weeks to recover fully. I had papilary cancer I wasn't worried at all. I am now 77 years old and doing well.

My mother had bowel cancer when she was 74 years old and lived to be 100. Please don't worry and good luck.

[sidneymark70 in reply to Brightness14]

Thank you Brightness. It’s a close friend this has happened to. She’s having a biopsy tomorrow and is very scared.

[Brightness14]

Please give her my very best wishes and try not to worry, She is a lucky lady having a close friend.

[McPammy]

My sister had thyroid cancer and had her thyroid removed. That was over 10 years ago now. My best advise once the thyroid has been removed is to focus on her blood levels of TSH, T4 and T3. My sister has only been offered T4 levothyroxine medication and is refused T3 liothyronine medication by the NHS. It’s all down to the cost of T3 medication unfortunately but the price is starting to come down. My sister has to keep her T4 level high and over medicated to keep her TSH suppressed or under range. This is to significantly reduce any chance of cancer returning. Your friend should try and request combination therapy of T4 plus T3 medications. Most endocrinologists wouldn’t want a thyroid patients TSH to be suppressed if they have another thyroid disease. But with cancer the directive is for it to be suppressed. That is low but not undetectable! I have Hashimoto’s disease so I keep my TSH range around 1-2. I’m on combined T4 and T3 treatment by going private as NHS wouldn’t pay for the T3.

Your friend is lucky to have you to help and support. I wish your friend a good recovery and hope they feel much better once their levels are stable, which may take a few months. It’s all about maintaining good levels and levels can change over time. Please also ask your friend to check Vit D, folate, ferritin and B12 levels as these often may be low for thyroid patients. Also the parathyroid can go a bit dodgy after removal so keep an eye on calcium levels post surgery. Maintenance, regular blood tests and altering medications is key. It’s a life of keeping levels where it’s best for the patient.

[sidneymark70 in reply to McPammy]

Thank you McPammy. As usual I find it really hard to understand the complicated (to me) facts of thyroid problems. I do admire you and all the others on here who have this knowledge. I do know about T3 and how most of us don’t have the opportunity of being given T3 and if this would help those of us with under active thyroid, I find it shocking we are not offered it. I will pass all this on to my friend, thank you again.