Stoppping NDT

[hector12]

Hi all i have to stop taking armour for 3 weeks to get a sestambi scan for parathyroid has anyone gone through this ? how did you cope ? I don't know how i am going to do this as when i miss taking one i feel so tired. Anybody been for parathyroid scan ? Thankyou in advance

[helvella Administrator Thyroid UK]

Are you 100% confident of this requirement?

Knowing nothing about this I had a look around, and saw conflicting advice with at least one doctor even claiming that an increased thyroid hormone dose might be appropriate!

For example, this paper:

ncbi.nlm.nih.gov/pubmed/124...

They used either levothyroxine of liothyronine to improve the imaging achieved by a sestamibi scan!!!

Rod

[helvella Administrator Thyroid UK in reply to helvella]

This link to a google book link is also relevant:

books.google.co.uk/books?id...

Or, if that doesn't work:

tinyurl.com/TUK-HU-SEST

Rod

[hector12 in reply to helvella]

Hi Rod i have tried looking up parathyroid scan it is very confusing this is 1 i found dundee.ac.uk/medther/tayend...

[helvella Administrator Thyroid UK in reply to hector12]

I've had my rant - I really am not convinced. It wouldn't be the first time that something is done as a routine which is actually a really bad idea. You are quite right it does say that thyroid hormone should be stopped.

Rod

[hector12 in reply to helvella]

Hi Rod I called Nuclear medicine this morning and the lady said i have to stop taking ndt for 3 weeks before my scan which is on the 12th december

[helvella Administrator Thyroid UK in reply to hector12]

If I were you I would be very, very insistent on getting through to a suitably qualified person - a consultant if needed - and getting the advice to do so in writing. Don't give up until you get that. (Indeed, in my opinion, advice on preparation for a significant medical procedure should always be given in writing.)

Stopping thyroid medicine for an extended period is a VERY serious business with potentially severe effects. I don't think anyone who has experienced significant hypothyroidism and its effects would be able to tell someone else to stop for three weeks.

I strongly suspect the "lady" is ignorant in at least one direction.

Rod

[hector12 in reply to helvella]

Hi Rod when i received this appointment yesterday the patient information sheet that came with it said if you are taking thyroxine please call which i did and was told i had to stop taking my thyroxine for 3 weeks

[roslin in reply to hector12]

I had several nuclear scans but quite a long time ago now and I was put on T3 for a number of weeks before the scans(not enough though) which I then stopped a day or so before. I think would be medical neglegence to leave you without thyroid medication for that long, you will feel ill for a lot longer than 3 weeks. Please talk directly with the Dr that have ordered the scan and ask for T3.

Roslin

[hector12 in reply to roslin]

Hi Roslin do you think that t3 would keep me ticking over till i get this scan i did notice on one of the sites i was on that it said to stop taking thyroxine 4-6 weeks and t3 1 week before im getting more confused by the minute G

[roslin in reply to hector12]

I think you need to get hold of the consultant ASAP and explain that you cant come off your NDT without having T3 instead. Another thing you can do is to ring the hypopara thyroid help line and talk to them about it. I dont know if you have been diagnosed hyper or hypo but the lady that has that helpline is very nice.

hpth.org.uk/home.php?id=33

Roslin

Ps you can join it for free

[hector12 in reply to roslin]

i am hypo Roslin thank you i will try and give them a ring G

[shaws Administrator]

I don't think many of us could stop for one or two days never min 3 weeks.

Rod's advice seems sensible. Double check and double check.

[hector12]

I also found this eanm.org/committees/technol... chapter 4 page 27 it says on it with advice from your clinician what a laugh this is the first time i have seen an endo in my life and he said not to come back for 3 months i didnt even know i was going for this scan until yesterday I will phone tomorrow and see what they say i dont know what i will be like with no thyroxine for 3 weeks but i know it wont be pretty many thanks to you all G

[helvella Administrator Thyroid UK in reply to hector12]

As I read that link, it appears to apply if it is your thyroid that is being scanned - not parathyroid.

Rod

[Jackie]

Hi I cannot stop my thyroid treatment because of my heart, also I am on Amioderone, which means I cannot have the normal nuclear scan, dye etc. I spoke to my Consultant Radiologist, Tuesday. He said that the scan I have to have, although still with isotopes, nuclear, is not very good to show the PTH. I had it done a year ago too, the same one. However, it is better than nothing.

However, only have them after an AM test for PTH, Calcium ( corrected) and vit D.It is only if they are very over range, well for the 2 and the vit D high for me. Then, it is needed. If you have had these bloods done A.M together twice, a few weeks apart., then I believe the best scan possible should be done. PTH ,if cancer, can be cured, easily ,by surgery. It is important to know. My PTH is 15.5, double the top of range., calcium also very dangerous. To treat high Calcium, over 3, it is in hospital and very dangerous indeed.

I hope that helps,

Jackie

[hector12 in reply to Jackie]

Hi Jackie i have had 6 calcium and pth tests and urine calcium i presume that is why i am being sent for the scan as the endo did not relay any info about the 2 blood tests or the urine calcium that was taken 4 weeks ago just got an app through post that was that so will just have to wait and see. G

[Jackie in reply to hector12]

Hi Hector,, Personally , I would phone the Endo`s secretary and ask for the bloods results make sure they send the ranges too, do not usually in hospital. . My Endo insists that the vit D is also very relevant, she also says important to be done am, my GP slipped up on that regarding the PTH, did it afternoon, early, and it was crazy, so high.

The test uses the scanner for a long period, they can only do several a day, they also do a CT at the same time. It is very expensive, If it is the Endo`s hospital, it is extremely unlikely that she would ask for it, unless she believed it important.

When I had my worst cardiac arrest, the stupid consultant, at that hospital, insisted I was off thyroid treatment for several months. My thyroid soon caught up again, when I was back on the drugs. My good endo said to go along with it I was worried too, of course, side effects horrible, but so important to have the best nuclear scan, it is absolutely the only way to see what is happening in the PTH. Yes, I have lots of calcium 24 hour tests too. High calcium is extremely dangerous, treatment is in hospital and very dodgy because an electrolyte If a definite diagnosis of the PTH is made, this is important for treatment for the calcium.

My consultant radiologist, who knows me and phoned this week, is a top expert in this field.

In the end it is up to you, but I wish I could have the "proper" nuclear scan,

Very best wishes,

Jackie

[hector12 in reply to Jackie]

Hi Jackie this is the first time i have ever seen an endo i which was in october i have been on levo for about 12 years felt rubbish decided to go for ndt started may this year decided to get my b12 vit d and iron bloods done as i read if they are not optimal ndt wont work properly thats when they found slightly elevated calcium and inadequate vit d since then its been getting higher my gp sent me to endo he took bloods then retested 2weeks later along with urine calcium he never got in touch with me about results and now apparently he has asked for this scan so have to deduce that both tests were high and being without my ndt will be worth it all in the end thanks again G

[Jackie in reply to hector12]

Hi I am glad you have decided that. As always you have to decide what is best, but admit it worried me when you felt reluctant, it is simple if the tumour found early, I would say full marks to the Endo.Hopefully ,it will just show "all clear" but at least you will know.

All the best,

Jackie

[Chippysue]

I wouldn't be able to get to the hospital to hVe the scan if I stopped thyroid medication! Also are you supposed to just go back to your normal dose after the 3 wks. Just imagine if you got to the scan and they said it wasn't important. I would have to discuss this further. Wishing you all the best

[rosetrees]

Have you seen this? parathyroid.com/sestamibi.htm

Do you really need to stop your medication? ****This is not a suggestion or recommendation**** - just passing on a little wisdom from my late mother about the telling of "white lies" - which she always explained to us meant saying something we knew wasn't true if it meant that the person to whom we were telling the white lie was happy with what they were being told.

[humanbean]

I think being told that you should stop NDT for three weeks is just another indication that thyroid problems are assumed (by the medical profession) to be a minor inconvenience rather than a serious, life-changing condition. I wouldn't stop my thyroid treatment for a day, never mind three weeks! I don't think I'd live that long.

[hector12]

Hi all i went up to hospital and went to nuclear medicine department i spoke to the technician she confirmed i have to stop taking my thyroxine as it is better not to have it in your system and when they give you the isotope/iodine they can get a much clearer picture if i have a parathyroid tumour this seems to be the nhs guidelines in scotland and i will just have to see how it goes as i need to get this scan done thankyou to everyone who replied to my question will repost G

[helvella Administrator Thyroid UK in reply to hector12]

First of all, congratulations on doing the necessary thing and getting the answers from the place itself.

Is there any mileage in asking to change to liothyronine for two weeks? At least one of the references suggests stopping levothyroxine for three weeks, but liothyronine for one week. Would that help?

Wishing you all the best - whatever happens

Rod

[hector12 in reply to helvella]

Hi Rod was just asking that very question to Roslin whom replied to my question i will try and ask my gp if i can get an appointment once again thankyou all for your input G

[helvella Administrator Thyroid UK in reply to hector12]

I saw - seconds after posting!