How do i stop thyroxine

[doolalleytat]

I have to stop thyroxine after 30 yrs for two weeks pre scan..how do i get through this...i have no thyroid.

[Hay2016]

I stopped medication before my RIA, became very hypo and wasn’t something I’d do again. Refused for my scan and they gave me an injection of thyrogen a couple of days before if memory serves. Assuming this scan is a check to ensure you have no thyroid tissue lurking I would ensure it’s definitly necessary to stop and enquire about alternatives.

Good luck.

[doolalleytat in reply to Hay2016]

Thanks..the scan is for parathyroid growths as my calcium through the roof..they gave me t3 for last two weeks then next two weeks nothing at all! I refused to stop last time and they wouldnt do scan but now i need scan so have to do this now...just not sure if maybe t3 stay in system to help me through..hey ho dreading it xx

[Mary-intussuception in reply to doolalleytat]

What scan is this? Have you had an Ultrasound scan of your Parathyroids? Don't need to stop Levothyroxine for that.

Have you had PTH blood test and Phosphorus? I would insist on these first.

I would be very reluctant to stop my Levothyroxine for one week never mind two.

However I have no experience of this.

What treatment have you been given for high calcium.

Have you Googled high calcium.

[bantam12 in reply to doolalleytat]

Have you called them about this yet ? As you know it's not necessary to stop Levo before a Mibi.

[Hennerton in reply to doolalleytat]

Are you sure they realize you have no thyroid? It seems a bit dangerous to me. I have no thyroid and I would not last a few days without my T4 and T3. It seeks barbaric. Why do they believe it is necessary to stop it?

Surely if they needed to scan somebody who has a thyroid, they could not stop their body from producing thyroxine?

[Angel_of_the_North in reply to Hennerton]

Exactly. You could become very ill and even need to stay in hospital if stop levo and have no thyroid. How would they even know if you'd stopped it or not if they are running tests on parathyroid, not the thyroid you haven't got?

[SilverAvocado in reply to Hay2016]

I agree with Hay2016, I've also got no thyroid had to stop all thyroid replacement 3 or 4 times, it's a horrible experience.

I was in bed almost all the time, could barely lift my head to drink, or roll over in bed. My skin was very grey and I could hardly feel my own breathing. I also gained a stone every time. I was in bed for at least 2 weeks after going back on my usual dose.

My consultant told me 'some people' cope badly with going off all hormone replacement, and I'd have good grounds to ask for thyrogen in future instead. I find it hard to believe there are any people skipping around with no thyroid hormone in their body! But of course doctors always think these things are a piece of cake! I could always spot people going in for RAI scans across the waiting room, and got a chance to talk to quite a few. They were all very weak.

[SlowDragon Administrator]

What is your vitamin D level?

Magnesium levels

Calcium level

PTH levels?

Can you add actual results and ranges

[doolalleytat in reply to SlowDragon]

When i turned up last app..not stopping my meds i told them the same re patients who do have thyroid the nucleur dr said its not the same and because of me not being told to stop meds £2000 had been wasted on unusable radioactive stuff..so its imperative i keep this app end of nov..but my bp dropped to the floor lastnight and was so scared im thinking of continuing meds for bit longer..its my life they messing with.they want to do op anyway so are they just using me to practice or what. All i am told re stop meds is a component in thyroid meds disrupts the gama something in results.thankyou so much for input i so emotional at the moment.

[humanbean]

I would complain, in writing, to the head of endocrinology, copied to your GP and anyone else you can think of that the requirement is barbaric and sadistic, and it could take you months to recover.

What do they say to people who have a healthy thyroid and who are not on any thyroid treatment? Ask them to get a thyroidectomy before they have this scan?

[bantam12 in reply to humanbean]

Levo can affect localisation of parathyroid adenomas on Ultrasound and it was thought the same for Sestamibi scans but studies have shown this isn't the case, obviously the Nuc Med department in question are still following outdated guidelines so are telling patients to stop Levo.

I wasnt asked to stop Levo before my Mibi scan and images were fine but interestingly my parathyroid ultrasound didn't give any useful images.

[Hidden]

You DO need to sort this out. Under the NHS the proper channel for this is through PALS (Patient Advice and Liaison Service). Writing letters to people will just waste time.

PALS will very quickly make enquiries for you and, liaise, go between you and the relevant health professionals. They will act as your advocate. PALS will be based in the hospital your scan is booked in. Ring the hospital and ask them to put you through to PALS.

Good luck

[doolalleytat in reply to Hidden]

Excellent advice.i will do this today.thankyou

[MaisieGray in reply to doolalleytat]

What has been the result of your call to PALS?

[Hidden]

Have you been taking calcium at all, or Vitamin D without the K2. When I had my TT the parathyroids were replanted in my shoulder and arm, where are yours if they are to be scanned it seems weird to me. I would not stop taking my medication either. Exactly what are they going to scan if you have no thyroid this seems wrong.

[bantam12 in reply to Hidden]

Parathyroid glands aren't routinely lost in thyroid surgery, only if the surgeon isn't careful !

I have no thyroid but still had hyperparathyroidism.

[Hidden in reply to bantam12]

Yes mine were moved but not lost either. I realize this thank you.

[doolalleytat in reply to Hidden]

If this is so that helps massively in helping my state of mind at the moment.thankyiu❤

[SilverAvocado]

Have just noticed you've been put on T3 for 2 weeks, and then have to be off the T3 for 2 weeks.

A 4 week wait isn't even enough time to wash all the T4 out of your system. The half life is 6 days in someone with a healthy metabolism, and will be less if your body starts slowing to a crawl.

This means at 4 weeks off T4 you'll have gone through about 4 half-lives, but pharmacologists work off 10 half-lives as the time it takes to have none of the medication in your system.

[humanbean in reply to SilverAvocado]

But someone with no thyroid hormones in their system at all is likely to go into a coma.

[SilverAvocado in reply to humanbean]

I've done it myself for as long as 2.5 weeks. According to the doctors of course this is no big deal. I had a row with a doctor analysing my RAI scan becaused he didn't even want to give me a sick note! He thought I'd be back in work on the Monday.

[humanbean in reply to SilverAvocado]

Flippin' 'eck. They simply don't have a clue!

[SilverAvocado]

If Levothyroxine messes with this scan, but hormone produced by a human thyroid doesn't, it does make me wonder if natural dessicated thyroid (NDT) would be an option. This contains thyroid hormone made by the animal, so might be more like human hormone.

You could ask to have it prescribed on a named patient basis.

Another option is just to lie to them and say you've been off your hormone.

[doolalleytat in reply to SilverAvocado]

Yes ill try the later..maybe just cut down alternate days. Too scarey to just stop..