Should I reduce my own dose?

Hi

I'm sorry to hear that you're feeling agitated and shaky and I can understand why you'd want to get rid of these symptoms.

I noticed that your post hadn't any replies yet and by replying to you it will bump it back to the top of the page where it'll be more visible.

However, as no one here is medically qualified it would be best to speak to your doctors before altering the amount of medication you are taking. Perhaps you could phone again and tell them how you're feeling and see if you can have an earlier appointment.

x

Heya Ellorai, 

Yes, your dose will be reduced when you see your Dr. However no, you def shouldn't reduce it off your own back - and we don't need to be medically qualified to say that. I think you know that yourself though, which is why you're asking. Your gut is saying you shouldn't do it. 

Out of interest, which Dr is it that wants you to arrange a telephone appointment? If it's your GP, then they shouldn't be involved in your medication at all. They generally don't understand how TSH needs to be suppressed and the delicate balance that's involved.

You need to speak to your hospital team, so whether that's an endocrinologist, ENT, or oncologist - each hospital manages things differently - you should speak to their secretary to let them know your blood results then they'll get back to you. Alternatively, have you been assigned a specialist thyroid nurse? If so, you could speak to them as well and they'll be able to advise.

FYI Latchbrook, I have a list in my emails of posts needing replies. They don't need bumped up as that then puts them out of order in my emails and also, as they now have a reply due to your post, Barbaral won't see them as needing replied to still. 

Thanks, 

Lass

Xx

Hi Lass

I'm sorry that I've messed up yours and barbaral's system but I had no way of knowing that it existed. I simply saw a post that was 2 days old and that hadn't had any replies.

It's OK, now you know.

And as I've pointed out before, it can take a few days for us to get to posts sometimes, for one reason or another, but we always get there in the end with helpful and useful posts, hopefully.

Lass

Xx

Thanks both

You're right, I know I shouldn't change my own dosage, I'm just so frustrated.

The blood test was ordered by the GP, not the ENT and I don't have an endo. I could call my nurse and ask him, but I think I've been referred to my GP for ongoing care.

I have RAI in three weeks too, if that makes a difference.

Heya, 

RAI in 3 weeks won't make a difference.

But you shouldn't have been discharged from a consultant yet. What you may find is you've been discharged from ENT and passed over to an endo or an onco. However, you might not be aware of that yet until after the RAI results come through. Because a consultant needs to see the RAI results then act on them accordingly, and a GP isn't specialised enough for that.

So if you've got a thyroid nurse, def give him a call tomorrow about your bloods and also ask him to clarify who is dealing with your case at the moment and who you are assigned to/under.

Regarding your RAI, I presume you're having the thyrogen injections? Are you also to do LID as well, and if so, are you all sorted for that? 

Lass

Xx

Thanks Lass, I'll give my nurse a call tomorrow.

I received an information pack about the RAI yesterday. It includes details about the LID and that I'll be getting the thyrogen injections

Well any questions about either, or about anything the nurse says, just shout. 

But hopefully hell be able to clear everything up and answer any questions you have. As well as allow you to reduce your dose! 

Lass

Xx

Hi Elloria

Sorry you have been having trouble with your dose of thyroxine and I hope you get it sorted out today witnthe nurse.

We must be starting RAI therapy at roughly the same time. I start the week the 12th August and will get admitted on the 14th August. I had a pre RAI scan so have already had injections in my bottom, which are not painful and I had no side effects. I was hoping to see the room where I have to stay last week, but will get shown on the Monday or Tuesday when I get my injections. I am finding the prospect quite daunting, as I hate being stuck indoors. I am slightly concerned about the temperature in the room, as when I was getting the injections the air conditioning wasn’t working and it was very hot.  I don’t know what my restrictions will be when I come out? Have you been told yet.

Best Wishes

Runner

Heya

Just wondering how things went with your nurse? 

Ask them if they have a fan. My RAI room has a desk fan in it that I either set up on the shelf behind the bed or on the wheelie table. Also in mine, opening the windows automatically turns off the heating. But there are also little USB fans that you can buy on Amazon that you could take in with you to help. 

As for restrictions, you won't know until the day of your release when they measure the levels of radiation still in you. So make sure and drink at least 2 litres of water a day, wash your hair once a day, and shower twice a day. Also, before your scans on your last day, make sure and completely empty your bladder and bowels. Otherwise it shows up on the scans and they may need you to go to the loo then try again. 

Lass

Xx