Parathyroid

[Lucky14]

I’m currently being investigated for this condition due to high levels. I was scanned and given vitamin D by endocrinologist, however scan wasn’t conclusive and levels still high. So having to have radiation scan a week on Tuesday, I’ve had to stop taking my thyroid medication for 2 weeks, I’m one week in and starting to feel crappy. Anyone been through this and how long will it take when I can resume my medication will I start to feel better? TIA

[bantam12]

I didn’t have to stop thyroxine for my mibi scan but I would think you should be able to restart once it’s done, best to get in touch with either your Endo or Radiology dept.

[Lucky14 in reply to bantam12]

thanks yes, I have to start it straight away once scan has been completed. I was just hoping to know how soon I could better as this is the first time in 20 years I’ve not had my medication, and feeling crappy.

[meme]

Was it explained to you why you had to stop your meds for 2 weeks? Parathyroid has nothing to do with the thyroid gland so I am confused.

[Lucky14 in reply to meme]

Yes, apparantly thyroid medication screws with the results, and endo agreed to 2 weeks stop.

[helvella Administrator Thyroid UK]

Are you taking 100 micrograms of T4 and 40 micrograms of T3 as it says on your profile?

It is not as if you are on a small dose (such as 50 micrograms) which might not be quite as awful.

Please do as bantam12 has suggested and double-check why.

[Lucky14 in reply to helvella]

Thanks, it was on the hospital letter, I was to have one last year but the letter stated if taking thyroid medication to call them, they then ran it by specialist at hospital who confirmed they couldn't do the nuclear scan unless the medication stopped. And yes still on the above dose.

[helvella Administrator Thyroid UK in reply to Lucky14]

What scan are they actually doing?

This is a link to the sestamibi scan that we usually think of regarding parathyroids:

radiopaedia.org/articles/tc...

That site has masses of other information about many scanning procedures. You might care to have a look and cross-check with what the letter says.

I can't help wondering if there is a confusion somewhere.

[Lucky14 in reply to helvella]

DO I NEED TO PREPARE FOR THE SCAN?

No, you do not need to do anything special. You can eat and drink normally.

You should keep taking your tablets EXCEPT for the following:-

• THYROXINE which you should stop taking 3 WEEKS before the scan

• LIOTHYRONINE, also known as TERTROXINE or TRIIODOTHYRONINE which you should stop

taking 2 WEEKS before the scan.

[Lucky14 in reply to Lucky14]

This was copied of NHS website, its a Nuclear Medicine Injection Scan followed by another one with CT, thanks for your replies.

[Lucky14 in reply to Lucky14]

Thankfully my NHS letter which is NHS Scotland, advised 2 weeks for both, theres no way I could have coped with 3 weeks 😱

[helvella Administrator Thyroid UK in reply to Lucky14]

It is usual to have this issue with thyroid scans which use radioactive iodine.

But not for parathyroid.

I'm just concerned that someone is not listening properly or is simply jumping to the conclusion that all thyroid and parathyroid scans require this.

[helvella Administrator Thyroid UK in reply to Lucky14]

A couple of possibly useful links:

Parathyroid.com

The most comprehensive information about parathyroids on the internet. Despite being from by a commercial organisation, it is produced as a source of information for patients with promotion very much a by-product.

Parathyroid.com is the world's top source for parathyroid glands and their most common disease: hyperparathyroidism. The site is maintained by the Norman Parathyroid Center, the world's leading parathyroid surgery center performing about 10% of the parathyroid operations in the United States--nearly 4000 per year. Hyperparathyroidism, parathyroid surgery, and blood calcium levels are discussed in great detail.

parathyroid.com/

Parathyroid UK

We are the only organisation in the UK & Ireland dedicated to improving the lives of everyone affected by parathyroid conditions.

parathyroiduk.org/

[Lucky14]

I was more curious to know if anybody who takes roughly what I do has ever had to stop for a few weeks, how long it took them to start to feel better again?

[meme]

I know within a couple of hours if I forget to take my meds so I do feel for you.

[Spangle15]

I have had the same scan for parathyroid and I wasn’t told to stop my thyroid meds. I know that’s not your question but I’m interested to know why you’ve been asked to stop taking them.

[Lucky14 in reply to Spangle15]

copy of letter

1

[Lucky14 in reply to Lucky14]

copy of medication stop notice

2

[bantam12 in reply to Lucky14]

It does say if it causes problems contact them so I would call and say you are beginning to struggle without the meds so what do you do.

It’s clearly not an absolute must as hospitals have their own instructions that meds are stopped or not so it can’t make that much of a difference to the results.

No point in suffering if you don’t need to.

[Lucky14 in reply to bantam12]

I agree, but I would rather know if I have issues with the Parathyroid and if this is what they say they must do, I suppose I need to trust them. Thank you

[Lucky14]

and post where it mentions not to take, hope this helps

3

[Spangle15]

ah I see, it effects the results. My scan didn’t find the adenomas, eventually they were picked up on an ultrasound. (But maybe that’s because I didn’t stop my thyroid meds).

[tattybogle]

the longest time i have previously stopped all Levo for was about 10 days (was taking 125 or 150 at the time. have forgotten)

by about 7 days it was getting pretty hard to function .

by 10 days i was definitely not able to drive safely. and even concentrating well enough to cross the road safely as a pedestrian ,was getting a bit 'dodgy'. So you need to be EXTREMELY careful and if necessary, plan for some one to be able to support you/ drive etc during this time .

As it says in the letter , your consultant said it would be ok ".... as long as she is able to tolerate it "........ So they are aware that for some people it will be extremely challenging .... whether someone can tolerate it, or not , is going to be very individual ., and it's not just a matter of 'how tough you are' .. it will depend on how your body and thyroid react.

If the best possible results from the scan are really important to you ,and if you can manage to get through this withdrawal period without getting run over or accidentally pouring the kettle over yourself , then so be it . but there is no escaping the fact that it will probably be very tough to get through . (and just for added fun , you will probably be extremely constipated by the time you go for the scan... )

The other consideration from my experience is that it will take several weeks to fully get over this ,even once you restart thyroid hormone . You (probably) will get over it.... for me i would say it was a good 3/ 4 weeks at least (after restarting) of not being 'right' . But i did improve significantly by then end of the first week.

[Lucky14 in reply to tattybogle]

Many thanks, I don't think I had fully appreciated how much this medication actually does for us, when we have been on it for so long. I have managed the 1st week so I'm going to try and get through the 2nd one, so that once I've finally got the accurate results for the other tests I know then what if anything is wrong and what the next steps are. Going to be an interesting week at work, I'm in charge of finance, but have an understanding boss. Thank you

[tattybogle in reply to Lucky14]

Ah ...if it involves 'adding up' you might want to get someone to double check your sums

Seriously though , i mean it ... don't take chances driving , your concentration will be officially 'pant's' ....if in doubt, get a taxi.

[bantam12 in reply to Lucky14]

Be aware that regardless of whether a patient is on thyroid meds or not the accuracy of the Mibi scan is not guaranteed, there are many people who have had adenomas missed on both ultrasound and mibi scans.

[Lucky14]

😆😆Thank you and yes I think I will heid your warning.

[tattybogle in reply to Lucky14]

oh .. and you might be "mono-syllabic" by the endo of the week.. so warn your co workers/ family they may be getting instructions via 'grunts'

[tattybogle in reply to tattybogle]

oh .. and your face/ eyes might start to temporarily look like you're applying for a 'bit part' in a Wallace and Grommit movie

[Lucky14 in reply to tattybogle]

LOL sounding much worse by the minute, well a bit of humour always helped me. Thanks

[lolajone]

I had a 4D parathyroid scan and was not told to stop taking thyroxine

[lolajone in reply to lolajone]

and just to add the adenoma did show up even though I was taking thyroxine