Complete Thyroidectomy

[PinkyRoses]

2 months ago my complete Thyroid was removed, now on Levothyroixine 75mg.

It is Poorly Differentiated Carsinoma

Now having 6 weeks of Radiotherapy, I was told will have Radioactive Iodine later on.

17 years ago I had Breast Cancer, really frighten, one after another, what next? How many years are left to me?

[Haze1975]

Oh Bless yeah. Have they told you what stage it was. If you have any questions or need to let it all out, there are or has been a few that has been or going through what you are going through now. I know it’s hard having breast cancer. And the word cancer scares the hell out of people. But there are people out there. Xxx

[Lora7again]

Most people without a thyroid do well on both T4 and T3 or NDT and I think your dose is a bit low but hopefully your Doctor will increase that. I lost my own mother to breast cancer in the 1980's and I do know that the treatment of breast cancer now is very much better and hopefully you will have many years left. I am sorry you are going through all this but I am sure you will start to feel better once your medication is at an optimal dose. I would ask your doctor about adding T3 to your Levothyroxine because you might need it.

Take care

Lora x

[SlowDragon Administrator]

Make sure to get thyroid levels retested

75mcg is only one dose up from starter dose

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Important to test vitamin D, folate, ferritin and B12

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Dose levothyroxine by weight is typically 1.6mcg per kilo of your own weight

[Batty1]

Hi pinkyRoses, You have lots of years left in you. I had Ovarian Cancer (Hysterectomy) 17yrs ago and thyroid cancer 3 yrs ago, that gave me a psoriatic arthritis flare .

Your on a very low dose of thyroid meds for someone without a thyroid. I guess it could be because of your upcoming radiation, I don’t know.

It’s taken me 3 yrs to get past the thyroid-less craziness while dealing with crippling PSA at the same time.

Keep coming here and keep posting your concerns and blood test as they happen ... this site and these members have helped me a bunch.

[Poniesrfun]

Hi PinkyRoses - I managed to get all three of my cancers squeezed into two years (lung, thyroid, colon) and am no evidence of disease four years out. Took a while to get my thyroid meds balanced out.

Sounds like you’re being treated aggressively with both EBR (to cover local extension) and RAI (to mop up iodine avid cells that might be around). Which is good. They should also be keeping your TSH quite suppressed so it should have been checked recently.

You’ll likely be having swallowing difficulties with the EBR - make sure they give you some “magic mouthwash” to help with that - it has lidocaine for pain, an anti-fungal to prevent thrush and an antacid. Your levothyroxine is tiny but you still may need to crush it to get it down in applesauce. This lasted about a month for me - sadly I did not lose a pound even though I could barely eat.

There are a couple of evolving treatments for advanced thyroid cancers and there were some people at our ThyCa conference last fall who have stabilized or been improving with some of the newer drugs for quite a long time.

Are you being seen at a specialist cancer center? I know in the US there are several that would be recommended but I don’t know which are well regarded in the UK.

Remember, none of us has an expiration date. My wonderful nurses reminded me of this as I went through the misery of chemo and EBR. Life is not the same as it was before cancer but it is what I decide to make of it.

Patti in AZ