Can i get by not having parathyroid op - Thyroid UK

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Can i get by not having parathyroid op

doolalleytat profile image
8 Replies

Well after for the second time going four weeks without levothyroxine for prep of parathyroid scan and being quite ill as i have no thyroid..yet again my scan tomorrow cancelled! Broken screening machine..told go back on thyroxine and we start again when appointment available..well stuff it..im not going through this anymore.reported to PALS ..MP..doubt solicitor can help but how can they put people through this..i just broke down today and now unaible to work due to extreme stress.done well working on no meds as well so far..m

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doolalleytat
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8 Replies
Nanaedake profile image
Nanaedake

I'm sorry you're going through this. A second cancellation seems very unfair. Are you at a small regional hospital and could you choose to have the surgery somewhere more reliable? Also, could you discuss options for other thyroid hormone while waiting for surgery? For example, thyroid cancer patients who have to forego thyroid hormone before tests are given other types of hormone treatment that clears quickly from the body before the tests. Has this been discussed at all?

doolalleytat profile image
doolalleytat in reply toNanaedake

They gave me t3 for first week out if four but then had to be absolute zero meds. Large town hospital but only one scanner. Just so let down.im going to dr tomorrow to see what he says but cant honestly say id go thro all this again..there have been other medical mistakes made previously.

Nanaedake profile image
Nanaedake in reply todoolalleytat

I would definitely research where the best centre is and consider going there instead of the hospital you are at. You need to feel confident about whoever is going to perform your surgery and the team otherwise it will cause you anxiety. Could you contact the parathyroid organisation and find out what their members recommend? hypopara.org.uk/hypoparathy...

Why did they say you have to stop levo when your scan is for parathyroids which have nothing to do with thyroid (apart from being physically next to it)? Just interested as I would have thought hat being unmedicated would increase your chance of developing a goitre which could make parathyroids harder to see (but my grasp of anatomy is not great).

doolalleytat profile image
doolalleytat in reply toAngel_of_the_North

No.i agree..no explanation given. I should have asked for more info at the start..i looked on net and something in thyroxine interferes with uptake scan..wotever..but so stressed now i need time out. Too much weight loss too on t3 although felt better both menta and physical..first day back on levo today.

Angel_of_the_North profile image
Angel_of_the_North in reply todoolalleytat

So if you have a normal thyroid, do they make you take a thyroxine blocker like carbi, I wonder? Might be worth trying a different hospital

doolalleytat profile image
doolalleytat in reply toAngel_of_the_North

I was so upset yesterday when they rang i did say i would go to any hospital..just told thats the way it works..or not in this case...i see what the dr says today as i have to now order my levo...so fed up..feel like running away...maybe if allowed sick i take few days away..other family stuff to cope with too.thankyou x

bantam12 profile image
bantam12 in reply todoolalleytat

Find another hospital for your Mibi scan, one that knows thyroxine does not interfere with the scan.

If you have a parathyroid adenoma you have to treat it otherwise your calcium levels will be out of control and dangerous, you need an operation but for people who for some reason cannot have the op there is a drug called Cinacalcet which may control pth but it's not widely available and not usually prescribed. You would be better going to a better hospital.

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