2nd op on Friday

Hi Nussi

I hope you are doing ok. I totally get how scary this is. I can only offer a bit of info as to what happened to me but hope it helps.

I was put on Thyroxine as soon as my thyroid was out [I had a total thyroidectomy]

My thyroxine dose is now 125mcg per day. this is good for me. However. I am very small. Ive met people who still have a thyroid on much bigger doses. You have to find the right dose for you. They start low and build it up which does take time. Side effects are from under or overdosing for your body. When you hit the sweet spot you will feel much better. I feel tons better than I have felt for years now that I have my dose right. Don't worry.

Please try not to worry abut the operation. You have already done the one side and getting through the completion will enable you to clear out the cancer and move forward with getting better.

Love and hugs to you. xx

Dear PhoenixRising,

Thank you so much for your reply - I don't really understand how this all works yet, and am worried about how I will feel on the thyroxene, so it's good to hear that you feel so much better. 

I actually have felt lots better since the first op, but my breathing was becoming impaired as the tumour was pressing on my windpipe, I was coughing a lot and trying to clear my throat without realising what was causing it,  and so to have 'my neck' back so  to speak I already feels loads better. I suppose thats one reason I am worried about the next phase of this,

I'm really glad you have got your right dose and feel lots better now. 

I'll keep you posted on how its going.

Sending love and hugs to you too

Nussi xxxxx

No problem. Please try not to worry. I know its easier said than done 

Yes I think my thyroid was so knackered it was veering wildly around with its own thyroxin so once its gone you can get levels more stabilised. It does take a while to adjust around to the right dose though so don't worry if it takes a little while. Just give yourself lots of TLC

Yes I feel so much better for having more "neck space" :) I have a necklace which was tight before and now I can fit my whole hand through it !. When I look at photos Im shocked how thick my neck was and how restrictive it felt. Im sure you will feel much better when you have more space.

Take care and let us know how you go on xxxx

Hi Nussi, I had my other side of thyroid removed two weeks ago. First side out in 2016.. finally got the other side done. I’m on levothyroxine now , I was put straight onto 125mcg dose day after last op as no thyroid now but my gp reduced it to 100mcg . I’m sure you’ll be fine but I know from my own experience it’s easy to say, I was well stressed out but my consultant, Anaesthetist and nurses were fab. As you well know you take it easy after and take care of yourself!!

Be thinking of you hun

joey  

Hey Nussi,

Nice to see you again, even if it is because you're now needing a completion.

I see you've had some great responses so far, and I hope they've helped ease your mind a little? I'm just going to go through your post and answer your questions one at a time, which means I'll probably repeat some of what you've already been told. So do excuse any repetitions!

Will you start on thyroxine straight after the op?

• Probably the day after. Because your thyroid was still in there, it was still producing the hormones you need. So there's no need to take anything the same day. So it will be the morning after your operation that you will be given your first dose of thyroxine, which will probably be 100mcg. (But don't worry if it isn't) Now, the nurses will possibly bring the medication around after breakfast, or at the same time as breakfast. Don't worry about this for your first dose, but once you are taking it at home you need to take it first thing on an empty stomach, then you need to wait a minimum of 30 mins, better if it's 60, before eating or taking any other medication. If you need to take calcium, you need to take this at least 4 hours after your thyroxine, and if you need to take iron then you need to wait 6 hours after your thyroxine. So if you take any sort of a multivitamin, check if it has iron or calcium in it and take it sufficiently long enough after your thyroxine.

Thyroglobulin

• So, you're not quite right on this one, so let me go back a bit. There's a relationship between your thyroid and your pituitary gland where your thyroid produces T4, the hormone that is in thyroxine, which your pituitary picks up on in the blood. If there isn't enough T4 floating around, your pituitary produces TSH - thyroid stimulating hormone - to tell your thyroid to make more T4. Once there's enough T4 in the blood, the pituitary reduces the TSH and the thyroid stops working so hard. The higher levels of Thyroxine that we take is to put enough T4 in the blood to tell the pituitary not to make TSH. We don't want any thyroid cells stimulated and awake, because that's when they multiply and grow. So if any of those thyroid cells are cancerous, high levels of TSH could make that cancer grow. So that's why we suppress the TSH. Thyroglobulin is a hormone that the thyroid cells make and send out into the blood. This is important because it means that with just a blood test, the doctors can get an estimate on how much thyroid tissue there is awake in the body. So as TSH goes up, thyroid cells wake up and start making more TG. As TSH goes down, those thyroid cells go to sleep and stop making TG. Also, with RAI those thyroid cells die off, hopefully, so again TG will go down as the number of thyroid cells goes down.

Thyroxine Dose

• This varies from person to person. Make sure and ask your consultant what they are aiming for your TSH to be suppressed to so you can keep track yourself. For the first year this is usually about 0.1, but it does vary from person to person depending on what their lump was up to. So a TSH of 0.1 is below the normal range, and as I mentioned above, to make the TSH go down you need to bring the T4 up. So it does normally mean that people end up at the top end of normal for their T4, or even above into the hyperthyroid range. Ideally, they want you in the normal range for T4, but there's no way to know where you're going to end up until they start trynig to balance your levels. If you are in the normal range, or even just a little above, then you will hopefully not have any side effects. However some people find that they get a racing heart, or hot flushes, anxiety, problems sleeping. But most people are fine, so don't start looking for problems, otherwise your mind might make some up for you.

RAI

• Has your doctor definitely said you're having RAI? Because not everyone gets RAI these days as not everyone needs it. It all depends on the lump you had, the size of it, how invasive it was, etc. There's no set date or timescale for this to happen though. If you need it then it all just depends on how busy the department is and when they can fit you in. It will be a minimum of 2 weeks after they give you a date, because you will probably need to go on a low iodine diet for 2 weeks before the RAI. You are in hospital for a few days - how many seems to vary from hospital to hospital - and then on your last day you are scanned to see where the radiation went, if anywhere. The WBS you're talking about isn't always done anymore, but the tests are usually 9 - 12 months after the RAI. These days it's more often just a blood test though rather than a scan. But again, that varies from hospital to hospital.

Hope that helps, and if you've any other questions then please do just shout!

Lass

xx

Hey Lass, 

Thank you so much for such a comprehensive response to my questions. I think I am beginning to get my head round it.

Am just now 36 hours away from the 2nd op so that is beginning to dominate my thoughts, and am getting a little apprehensive. I guess it's because we know how we'll feel when we wake up the second time. 

I hope you're well and I 'll be back for a further chat in a few days.

Wish I could be as upbeat as you are, but at the moment I'm not so calm, although most of the time, I'm really optomistic.

Once again I can't tell you how appreciative of your advice and guidance and thank you so much.

Many regards

Nussi

Hi Nussi,

This is my first ever comment on the site so I hope it comes out ok!! I had half my thyroid removed in March this year as I had a lump in my neck that was thought to be benign. However it wasn't and so I had the other half removed in April. I then received RAI a few weeks later. I went straight onto 150 micrograms per day and I have felt absolutely normal throughout. I had a consultation last week with the surgeon and he's upped my dosage to 175 per day as my TSH level was at 0.2. 

Everyone has been so supportive throughout and I just wanted to say I am now 100% positive about my future and I really hope that you have the same outcome.

All the best to you

Graham

Ahhh I want to like these posts but this site isn't letting me. Sending positive thoughts to you all. I had my completion last November and currently on 150 mg, feel OK apart from the odd headache. Next follow up appointment in November, fingers crossed. Just want to send you all positive vibes and much love. This site has lovely people with brilliant advice. I would be lost without it. This time last year I wasn't in a good place following my diagnosis but this site helped me a lot. Big hug to you all xx

Thank you Graham, its really good to hear your story and hopefully after tomorrow, I 'll be on the way to being sorted out too!

All the very best to you too!

Nussi

First off, good luck for tomorrow! I'll be thinking of you and looking forward to hearing from you once you get out of the hospital and feel up to it! 

You're welcome for the post. Tis why I'm here, to try and help folks with the things I've learnt along the way. 

I hope you've done something nice this evening to take your mind off tomorrow and to help you relax? 

I'm not great at the minute, too many broken bits and painful bits. But I'm getting on with it. I made a really nice lamb, mushroom, and butternut squash barley risotto tonight for tea. It was yummy, and plenty more for tomorrow too! 

As for being upbeat, it's easy to be upbeat for others. Not so easy to always be so upbeat for yourself. Everyone has their down days, hours, or minutes. So if you're having one just now, recognise it for what it is, allow it to happen, but don't get stuck in it. There's a better day just around the corner! I promise. 

Hey there Graham. Just wanted to give you a little shout out to say welcome to posting on the site, and your post came out brilliantly! 

Hello again, nice to see you still around. To like a post, make sure you're logged in. If you're not logged in then the like button won't show up. 

Lass

Xx