Hello again, I had my scan and blood tests. The first scan that shows up RAI in the body showed that there is no thyroid tissue left in my body. The results of the CT scan giving the 3D image of my neck and chest hadn't arrived before I left so that's another appointment. The blood tests showed high TSH as expected but testing for thyroglobulin came back with "insufficent sample" and the Endcrinologist needs to investigate why they put that in. So, looking good I think but thyroglobulin can only be made by thyroid tissue I'm told so don't know what will follow. in the meantime I will quietly celebrate the lack of thyroid tissue detected in the first scan as it is healthier to do that than worry about the Tg. I asked about the eyesight but as usual he said "old age" Cheers mate I thought I was young and gorgeous. My eyesight has suffered significant deterioration in a few short weeks. First, when I finished studying, 2nd with the 1st thyroidectomy when they took 5 little cancerous glands at the same time and I lost brain function, voice strength and felt quite battered and again after leaving off the thyroxine for these tests. Are they going to do this ever again? Every year? 5 years? This test period has been hard. It has cost me job opportunities (I tried to return to work after kids but couldn't get a foot in the door) and given me a very short temper as well as the symptoms of hypothyroidism. However, I think that other than the anxiety and insomnia, I was pretty healthy and that has stood me in good stead -so far anyway. My husband wanted to lose weight a few years ago before the cancer and anounced we were going to do the 2 day fasting and 5 day normal eating. At least I think that's how it started - I had already stopped eating bread as I felt a little bloated on it and my weight was climbing slowly. Initially, I thought "Don't tell me what to do". But then I thought I'll give it a go. It was really hard for ten months and then I acclimbatised. I went down to 1 day fasting for maintenance but kept using his recipes and principles. Then I got a very physical temporary job and was losing too much so stopped. I'll cut it short, later we did the 800 calorie diet. From this and the thyroid school (online website) I learned about gut health, inflammatory foods and deflammatory foods. I eat 3 meals a day, loads of fresh fruit and veg and I mean a lot, fish when allowed, lots of pulses, take fish oil when allowed, limit dairy and exercise loads when able. I usually maintain a steady weight. I started gradually losing a bit more than I wanted whilst hypothyroidy during this test period. I think without this, I would have suffered more than I have done. I have Hashimoto's too. I hope this doesn't sound boasty -I am lucky in some ways that's all. I have a couple of friends with various thyroid issues -not cancer- who have a terrible time hypothyroidism and weight and nothing she does works. It is soul destroying. And I know what kind of cancer it was now -papillary.
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I found this site and decided to blog because I have had so little information on people’s experience in similar circumstances in the grand scheme of things.
I dont one know what kind of thyroid cancer I had eg papillary etc. It was only when I received a helpful email from this sight that it was all laid out for me. So I went back through all the paperwork I have to find out. I found bills, and statements and discharge papers and receipts.
Just now I am radioactive and keeping away from everyone. I was not expecting this when I was told about it a few months ago. I have been off thyroxine since early August I think. Fuzzy brain doesn’t remember like it used to. I was on tertroxyn for a few weeks but finished on 9th September. Since then I forget things, sometimes go completely blank and I get VERY tired. So much so I need a long rest during the day. Having said that I have been teaching swimming whilst in the water.
I think because I do that people don’t understand how beyond thinking and moving I become.
Anyway, I was anxious in the lead up to taking the low dose iodine. I had not considered until the week before that result could show a return of the cancer. I went from tired and blasé to... oh...
I organised the radioactive week as far as work went, and catering for children. My husband went away on business trips he too was exhausted and is going away at the end of the week while I go through settlement on a house we’re buying. More and more plans for him to off somewhere kept coming. In the end in a clumsy way I put my foot down. So now everyone understands and things might be a little less frenetic. What they understand I don’t know - that I am needy? Who knows.
I got a bloody good rest the day I took the iodine (yesterday). And I felt much better. I ignored the phone and the texts and ping ping pinging. I felt much better. I pottered around today and then got bored. Tomorrow-and that’s just brought me back to reality- I will have the scan. I will have to check where I’ll have to be and when.
I believe the results will be given to me tomorrow. Who knows? No ones told me.
Although lots of things have been told to me, I forget much of it. Nevertheless, the Endocrynologist is very word efficient. He was rather surprised when I asked how long I would have if I did not take thyroxine again and what would be the effects of not taking it. It flashed across his mind that maybe I wouldn’t resume.
I have been been hanging out to get back on my drug of dependence as have my family. I think we’ve been thinking everything will be back to normal and we can all carry on taking everything for granted.
But frankly, if we don’t make changes, I think he or I will be back at the doctor’s.
wow I’ve gone on a bit. I will post something about the difference returning to thyroxine makes at a later date.
My eyesight is shocking now...
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Hello, It’s 12 months since I had a total thyroidectomy (in two parts) and RAI. Now I am having a checkup with a low dose rai so I am off the thyroxine. Has anyone else been through this? I just can’t keep up physically the way I used to. I almost feel like my chest hurts if I run around too much. I am not keen to go to the dr as I feel like a hypochondriac. I have a skin growth just under my eye, which the GP said is not cancerous and may go away on its own. Is it related to being off thyroxine? Is it because I have been taking tertroxine? Can long term damage be done by a lack of thyroxine? Does being off thyroxine affect your skin? I seem to have lots of cuts and scratches. Anyone got any experience regarding this? Love to get some answers. Thanks.
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I’m not surprised you’re so worried and with reason too. I think you posted in July but I would love to hear how things went. Survival rates are very high. I was diagnosed with thyroid cancer last year and had several treatments. First, removal of half my thyroid, then the rest of it and finishing with radioactive iodine in isolation. All this occurred within a few months. I have been fine and very active since on thyroxine. I generally eat very well and maintain a good weight. I told my children that I was going to have treatment and why - I tried to give an impression of confidence in a successful outcome. I talked to them after I was told the good news and they said they were certain all would be well. Unfortunately, my Dad was visiting at the time so I had to tell him (senior citizen) and he was very worried - he had had the all clear from prostate, kidney and pancreatic cancer only months earlier and we lost my mother to breast cancer some years ago. I think I minimised his worry. Thyroid cancer is survivable. My point is that for me ,talking about it has been worthwhile because a secret gnawing away at you is no good for anyone. Best of luck to you. Wish I could have found this site at the time you first posted.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.