Regarding thyroid cancer.

[puneet123]

I had Thyroidectomy in 2012 in London and Radio Iodine treatment. My cancer still had not gone so they increased the levothyroxine to 125mg. Before I was taken 100mg. The high dose of thyroxine is causing lots of side effects due to high level of thyroid hormone in the body but is not getting rid of the cancer either. It is only suppressing it. So I came o the USA for a second opinion and the doctor said he thought it would be good to reduce the thyroxine and give me more radio iodine therapy. He said the 125mg is not curing the cancer only stoping it from growing. He is refering me to Euston. Can anyone advice me further.

[sorrel89]

Hi there puneet123,

I have just been reading your post, could you please give a little more information. What type of thyroid cancer -papillary, follicular, medulary or anaplastic? What staging of cancer/ was it metastatic? Did you have a total or partial thyroidectomy? Did you have co-existing hashimots's/ graves ?Have you had any recent isotope scan and what was your uptake? Thyroxine can cause lots of side affects but you also need to have blood tests including ferritin, B12, vit d, magnesium, selenium, folates. Sorry I have asked lots of questions....

[puneet123 in reply to sorrel89]

My other blood tests are ok. Thyroid cancer type is papillary and I had total thyroidectomy. I also have lupus. I had ct scans and ultrasounds and they showed I have 1 percent cancer cells remaining. I had 1 dose of radio iodine. My cancer was at the first stage. They had to remove 84 lymph nodes and 42 of them had cancer as well as the thyroid. When I was on 100mg of thyroxine I was ok but when they increased the dose to 125mg it started causing weight loss. They put me on a high dose to stop try and srink the cancer cells so that they will go a way but instead they stayed there. It's ok. No just throid cancer and lupus.

[Meltedwellies]

T3

[puneet123 in reply to Meltedwellies]

I have to have levo thyroxine as I have no thyroid.

[Clutter]

Surely RAI should have been repeated when the first indications that cancer had survived initial RAI were found? I do think this should be arranged as a matter of urgency.

High dose levo will suppress TSH and slow proliferation of remnant thyroid cancer cells but won't destroy them.

I was started on 200mcg Levo after RAI. The idea was to switch off pituitary output and suppress TSH. As far as we know, via RAI whole body scan 6 months later and thyroglobulin tested every 6 months, it hasn't recurred.

Over medication made me very ill indeed and I'm now on 75mcg levo and 25mcg T3. I've just had a conversation with my endo advising I am prepared to risk recurrence by reducing my dose in order to have a better quality of life now.

Taking T3 suppresses TSH so I wonder whether this might be an option for you, either solus or in combination with T4.

[puneet123 in reply to Clutter]

I cannot take other medication cause I am on lots of medication for my other conditions such as lupus and epilepsy.

[Clutter in reply to puneet123]

T3 is Liothyronine, also thyroid replacement hormone. If you were unable to tolerate the increased dose of levothyroxine you may benefit from the addition of T3.

Levothyroxine is T4. T4 is a pro-hormone and converts in

the liver to the active hormone T3.

The priority must be further RAI to kill off the remaining cancer cells though.

[sorrel89]

T3 is the most important hormone of all when it comes to suppression but as clutter says it will not destroy cancer cells. your dose is actually quite a low dose and you also may have a load of other issues because of T4 monotherapy. Diotroxin was used as a combination suppressive therapy of T4 and T3 many years ago . Now the options are individual doses of T4/T3 at a push.You need more clarification about your illness and answers with blood test results including Ft3 you need to take charge of your illness. When you know the facts you can make more informed decisions about treatment and management options. Please get back to us.....post your blood test results...take care

[puneet123 in reply to sorrel89]

My blood tests were normal. They just test my t4 . My iron level was also normal and my magnesuim level was normal. My results change cos of my lupus condition. Lupus effects my blood vessels and 2 years later I was diagnosed with thyroid cancer.

I can ask about t3.

[KendraRRomero]

Cancer is the worst diseases and till today there is no operation to cure it completely. Levothyroxine 125mg will never help you to cure your cancer and but it will stop your cancer to growth more. Radio iodine therapy is the last option you have to cure your cancer.

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[puneet123 in reply to KendraRRomero]

I had 1 dose of radio iodine and that did not cure it. Maybe second dose might help.

[sorrel89]

KendraRRomero...can you explain why you have put the link about cellulite at the bottom of your post, is it relevant to this thread on cancer?...thank you...

[LouiseRoberts in reply to sorrel89]

Hi

I have just seen the link and removed it - it contravened our Guidelines. If you spot anything of this nature in the future, please feel free to report it - thanks!

Louise

x

[Loopycat]

I'm slightly confused by the question. Where does your cancer remain? I had a total thyroidectomy which thankfully removed the cancer although I've some residual thyroid tissue which I'm going to have another smaller dose of rai for shortly . I too am being suppressed but that's about stimulating the thyroid tissue. It doesn't mean there's cancer rather that any residual tissue has the potential to become so

[puneet123]

My cancer was in the thyroid and 42 lymph nodes in the neck. After recieving total thyroidectomy and removing 84 lymph nodes and recieving 1 dose of iodine I still have 1 percent of cancer cells left. So they increased my thyroxine to 125mg and that did not get rid of the cancer i just stopped it from growing. So the the doctors here in the us want to reduce my dose to 100mg and give me more radio iodine if needs be as the 125mg is causing weight loss. Reducing the dos cud make my cancer come bak.