Anyone suffeeed with struma ovarri..thyroid follicular canceer

Hey Maureen.

First off.... big giant hugs to you!

There are a few people around with follicular thyroid cancer, but I'm not sure if antone else also has struma ovarii as well. I've Google though, as I'm sure you have too, and it looks like there's a good prognosis once found. Seems like once it's whipped out, that is all sorted. But as I say, that's just from a quick Google. So looking to the future, I'd say it's just the follicular cancer that's to be considered.

You say you've had a second dose of RAI? Why a second? What did the first show that meant you needed a second? 

I've just had my 4th RAI, and I totally get the barely able to function thing. I had a rare bit too - I had ectopic thyroid growth on my heart. So I had to have open heart surgery to whip it out. I've also got poly-cystic ovary syndrome as well. All of that mixed together gives a 'fabulous' mixture of hormones doing all sorts of weird things inside of me and wiping me out. I'm on 225mg of levo too, and in a lotraditional of pain due to spread - so I'm unable to work at all just now. I know people with fibro too, so I see how it affects them day to day.

So from my own experiences, it sounds like all you're dealing with is - unfortunately - normal. I just keep reminding myself that this is just a phase, that one day it will be over and 'normality' will return in the future. That, and finding pleasure and a smile in little things keeps me going. 

Here if you ever need to talk or vent or what have you.

Lass

xxx

Hi  

I hope you won't take it the wrong way if I say I got quite excited reading your post because I've been here six and a half years and I've never heard about what you describe. We all know that thyroid cancers can pop up in other parts of the body - usually as a metastatic spread - but I never heard of anybody having TC in the ovary. Odd as it must sound, the thyroid component probably makes the ovarian tumour a bit worse than a 'normal' benign ovarian tumour but a lot more treatable than if it had been a more typical ovarian cancer.  I can imagine the surgeon and doctors got a bit excited. In view of the rareness - and we always remind people that rare is not the same as bad or dangerous - I hope you are being looked after at a really good hospital with somebody who knows about struma ovarii.

I have a friend with fibromyalgia and diabetes and a thyroid that's not much use to her and I suspect that a lot of what you're feeling with regards to the exhaustion is due to having just far too many different issues all messing you about at the same time. Have you spoken with a pharmacist or doctor to make sure that you're spacing out all your medication in such a way to make sure you're giving the thyroxine time to work before it starts fighting with anything else you're taking?  The usual advice is to take thyoxine on an empty stomach with nothing but water and then wait 30 minutes or an hour before you eat and to not take it at the same time as any other medication. A good pharmacist will look at all your drugs and tell you what might fight with what.

How long is it now since you had your thyroid surgery and how long have you been on thyroxine? Are you getting regular blood tests and do you know your current thyroid function test results. Those numbers could give some clues about why you're so tired.

Hi barb yeah i am being looked after. I take my levothyroxine  on a morning as soon as wake up then rest of meds with breakfast. I have tried reducing some of the pain meds . I can just cope on three doses rather than four but struggle to cope on any less at moment i am struggling with diabetes meds and may have to go on insulin.The hospital are doing regular check ups and have input from mdt at James Cook hospital .I also had what my nurologist thought was a side effect of the cancer which was polyphrasia where about six months before I found the mass I had a mild blackout which has left me with multiple images in both eyes. As you say i am fighting too many things. I have finally given in and realised I am not superhuman after all fortunately my employer agreed for me to go part time and i was just old enough to collect my pension all be it at a reduced rate. Which has made it possible to cope ....well almost. 

Maur.

Hi I was Diagnosed with the same in Nov '17 after a Hysterectomy. The ovarian tumour was a Terratoma and I was told it was very rare... I had my thyroid removed in March '18 and Rai in May '18 . So far so good. I went onto annual Hospital appointments from Sept this year. Fingers crossed. Best wishes.