Feel like giving up!: I added a bit to the end of... - Thyroid UK

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Feel like giving up!

chocoholic17 profile image
6 Replies

I added a bit to the end of my previous post last night but this morning I honestly feel like giving up. I phoned the General Hospital this morning,where I'm awaiting a thyroid isotope scan. I saw a ENT guy privately yesterday to try and find the cause of my choking on food. One of the things he wants to do is give me a barium video test and he organised that for today but overnight I've read in several places that you shouldn't have any other radioactive tests for 4 weeks prior to the thyroid isotope. So, I thought I'd check with the radionuclide imaging department first thing this morning. Person I spoke to didn't know but checked to find my isotope referral.......apparently THERE IS NONE!! She said she'd speak to the appointments person and get back to me. She hasn't yet and I phoned three hours ago.

So, my G.P. Surgery insists it has been requested but the hospital say it hasn't. Brilliant!

I had to postpone the barium test because I didn't want to risk not having the isotope but I stopped the Levothyroxine nearly four weeks ago, in preparation for the scan,as I was told on 16th December by phone about nodules being found on my thyroid and an isotope request going in.

I feel like I'm going round in circles. My mum has just told me I should have cancelled the isotope instead of the barium but then I never do things right in her eyes but surely it's better to go with the scan that I've been told is checking for hot or cold nodules (especially as I've already been told one nodule looks suspicious).

What the hell am I supposed to do, when I get conflicting stories from my surgery and the hospital about the isotope? Was I wrong to cancel the barium test? Is this normal to have to fight for appointments and query the handling of every damn procedure?

It's bad enough feeling so poorly, without the struggle for proper treatment.

Sorry, rant over. I think I just needed to get things off my chest.

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6 Replies
shaws profile image
shawsAdministrator

Yes, chocoholic, that's why we are here, so that we can vent our anger and frustration when things go wrong.

Is it possible to re-instate your Barium Swallow. It's not at all painful and may detect a problem with your throat, although when I had one I was told I had a 'post cricoid web and if didn't have it removed, I would choke to death'. I then had under anaesthetic a 'procedure' to remove it - the only thing was, I didn't have a p.c.w. I demanded to know at my next appointment what was it that was shown on the x-ray - no answer. Of course, they weren't slow in collecting their fees.

I now realise that it was actually my Thyroid Gland which must have been swollen. Yet not one of the 10 Consultants, ENT, GPs, etc. knew or guessed I was underactive. It was a first aider who suggested and my TSH was 100. Not one knew or even guessed.

chocoholic17 profile image
chocoholic17 in reply toshaws

Thanks Shaws. Sorry you too have had your share of problems. I'm lucky in that my hubby was willing to spend about an hour on the phone to the hospital this afternoon, being passed from pillar to post. Finally though, he was able to find out my G.P. DID send a referral through but it seems to have been an admin cock up at the hospital.......I.e. Just don't let the patient know what the medics intentions are.

Well, it turns out the doctor asking for the ultrasound with fine needle biopsy, asked for it to be rushed through before the isotope and I should have had it done yesterday or today but I've not heard from them. I think I might hear tomorrow for that and then the isotope should get done shortly after. Thank goodness for that.

I am so pleased to also find out the endocrinologist I am to be referred to is now keeping an eye on my situation too. He too wants the isotope scan done.

Its funny really but it's all the waiting and chasing things that is doing my head in. Whatever the outcome, once I have a diagnosis, I shall know what I'm up against and deal with it. It's the not knowing that's hard.

Sorry to be a moaner earlier today. It's just frustration coming out.

shaws profile image
shawsAdministrator in reply tochocoholic17

At least on the forum, you can let steam off and as you say it's the 'not knowing' and waiting and not receiving any word from the hospital.

I hope everything goes smoothly from now on.

chocoholic17 profile image
chocoholic17 in reply toshaws

Thank you, Shaws.

Revsie profile image
Revsie

Well chocoholic 17, I'm afraid I couldn't help you with an answer earlier on but be reassured that it's always good to get things off your chest, especially on this site, as your rant just might resolve someone else's problem?

I'm really pleased for you that your endo is looking out for you, so the very best of luck on your road to wellness x

chocoholic17 profile image
chocoholic17 in reply toRevsie

Thank you, Revsie. Much appreciated.

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