Sestamibi (nuclear scan) parathyroid

[FeedMeChoc]

Sorry to post here, I know it’s not an AIBU topic but general health is quiet and my question is about a rare illness / scan so hopefully someone here will see it and advise.

I have a sestamibi scan tomorrow and haven’t even thought about it... until now. And googled it and almost fell over. It looks HORRIBLY claustrophobic and I’m not sure how comfortable I feel about being injected with radioactive dye (worried about a reaction!)

Please please please share your experiences with me, good and bad so I am better prepared.

Also, I have put a post up about a parathyroidectomy on general health so if you can help with that too I’d be much obliged!

I've had a CT scan before when I broke my back - I think a sestamibi scan is a type of CT scan? If it is then it really wasn't that bad, the injection causes a weird warm sensation that makes you feel a bit like you've wet yourself. The nurse who was with me kept assuring me (without prompting) that I definitely hadn't, so I guess a lot of people are convinced they have

I've also had a couple of MRIs, once when I broke my back and another while I was pregnant as part of medical research. That also wasn't bad at all.

When it comes to feeling claustophobic - unless you actually have the phobia I'd just recommend keeping your eyes shut and thinking about something else. Maybe looking up some relaxing breathing techniques in advance.

Also I can't remember the CT scan as clearly but for the MRIs they definitely give you a button to press, so if it all gets to much you can just press the button and they'll have you out in seconds.

Good luck with it all.

The nuclear medicine techs will make it as calm as possible, and they don't want you to have a reaction to the tracer injection anymore than you do, so they will be sure to check for anything that means you would be more likely to have one.

Its not claustrophobic like an MRI at all, but closing your eyes and concentrating on just breathing is always good

I’ve had a few ct scans over the past 6 weeks and they’re fine, not claustrophobic at all. I needed them so the risk of radiation outweighed the alternatives. I think it’s about equivalent to 4/5 flights so still relatively low.

I had it done about a year ago. Nothing to worry about, not claustrophobic at all. From what I remember it takes about 45 minutes, and you need to be relatively still while the machine scans your parathyroid glands from different angles. They played classical music for me during the scan. I think I moved a bit too early, as I thought the scan was finished, and they said that it might not be successful - but luckily it was. The only problem is parathyroid glands are so tiny that often results are inconclusive. That's how it was in my case, and only during surgery the results were confirmed. I also had parathyroidectomy - nothing to worry about either, all went well and the calcium and PHT hormone levels have now stabilised (a year after surgery).

I also had one a few years ago and it was fine. Boring because it took a while but as pp said inconclusive in my case too. In my case the parathyroid adenoma was in the thymus in my chest not my neck and there was a tiny indication on the scan which wasn’t picked up until an excellent surgeon had a second look a year later. I had surgery too, overnight stay though I had a fight to get it and eventually had to go private.

@Monoceros did you have many pre op symptoms and did they all resolve post op?

@BestIsWest same for you too! Are you ‘cured’?

Thank you both for sharing!

@Feedmechoc - yes!

I had a lot of symptoms. Probably the worst was osteoporosis and repeated fractures- I had about 13 broken bones by the time I had surgery. I also had muscle and joint pain, constant sinus headaches, tiredness, kidney infections (I never had stones though), indigestion and lots of other things which I’ve since attributed to the Parathyroid issue.
It’s about 4 years now and my bones have more or less recovered, I had a DEXA scan last year. I haven’t had a kidney infection since, I still have energy problems but I think that’s a thyroid/menopause issue. The sinus pain is gone. I still have an annual test for pth and vit d. But yes , on the whole, I’m much better.

There’s a really good FB group - something like hyperparathyroid uk action for change which might be worth checking out if you haven’t already.

@Feedmechoc Interestingly I didn't have any pre op symptoms. The problems with my parathyroid gland were discovered during a routine blood test. High levels of Calcium and PTH hormone were found. I had a bone density scan as well, which showed weakened bones, luckily no fractures though. Good luck with your scan tomorrow!