Went for ultrasound this morning and was turned away because I hadn't stopped taking thyroxine. Partly my fault because I skim read the info attached to the letter I was sent but it was poorly worded and didn't state I had to stop taking thyroxine in order to have the scan. Someone else waiting for a thyroid scan had also misread her letter and hadn't stopped her thyroxine. I was so annoyed I didn't ask how long I had to stop taking it before scan. Does anyone out there know? I said to the Radiographer who l spoke to that I wasn't happy to stop taking thyroxine in order to have a scan and the radiographer said I could/would be offered an alternative. What alternative? If you need to stop the thyroxine to have a scan to show a clear picture of thyroid function then taking any thyroid hormone before having a scan would not be possible?
I queried the point of bothering to have a scan and the radiographer mentioned to see if I was hyper and I said there was no way I was hyper as all my blood tests indicated hypo!
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Lje05
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You can't be hyperthyroid if you are taking Levothyroxine.
I think someone in radiography has got it wrong. To check hyperthyroidism an uptake scan is done after the patient swallows or is injected with trace radioactive iodine.
A thyroid ultrasound is just a scan to image the thyroid gland showing the size and condition of the gland. It shouldn't make any difference if the patient is taking thyroxine.
So the scan could have been done then even though I hadn't stopped taking my thyroxine? The radiographer went away to check with someone (consultant I presume). The radiographer asked me what medication I was taking and I said I was taking levothyroxine. The radiographer asked my how levothyroxine was spelt and then said they would have to go and check with someone to see if I could have the scan as if I was taking thyroxine I couldn't and I said levothyroxine was thyroxine! When the radiographer came back after checking I was told I couldn't have the scan because I hadn't stopped my thyroxine.
The info I was sent outlining the procedure stated that I would be injected with radioactive iodine and then after 15 minutes scanned.
So if I understand correctly what you have told me they have completely cocked it up and should have done the scan without injecting the iodine and they have in fact assumed I was there because I am hyper and not bothered to check with me! I would have thought the endo who referred me have made it clear that my thyroid was underactive!
They were intending to do an uptake scan which is usually done to check for hyperthyroidism so that is why they wouldn't do it because you had taken thyroxine. I don't understand why anyone would order an uptake scan for a hypothyroid patient. An ordinary ultrasound scan should have been ordered.
It certainly doesn't give you much trust in them. Not ever having any sort of ultrasound before and not being familiar with the procedure when I received the letter I wasn't aware that the radioactive injection is given before a scan when checking for hyperthyroidism, as Clutter has said.
It just didn't make sense to me what the radiographer said to me so I thought I'd post on here to see what other people thought. I have just had a quick Google for info on radioactive injections and scanning and one site states that thyroid medication is usually stopped 4-6 weeks before the procedure so seeing as I only received my appointment letter 10 days before the appointment, even if I had stopped my medication it wouldn't have been long enough between stopping meds and having the scan.
The info I was sent outlining the procedure stated that I would be injected with radioactive iodine and then after 15 minutes scanned.
Last time I was injection radioactive iodine, I was told to stop Levothyroxine for two weeks. I was scanned and rescanned that afternoon as well. It’s for a full body scan. And then take a closer look at your thyroid at the end. When radioactive iodine is injection into the blood. it lights up something in your body what the scan show up when scanned.
I think it’s because radioactive iodine. This is what I was told to do in 2014 for a full body scan. Unless it’s changed by now. I don’t know. But what type of scan was it for.
I had assumed it was just the thyroid area they were going to scan. The information I was sent re procedure was that a small amount of radioactive tracer would be injected into arm. I would wait approx 20 mins and then the scan would follow which would take 15 minutes. I received my appointment letter less then two weeks before the appointment date so even if I had stopped taking my levothyroxine as soon as I had received the letter I wouldn't have stopoed taken meds for the necessary two weeks if that is how long you need to have stopped meds before the scan
And we keep wondering why NHS wastes so much money. They need to send their endo's and radiographers back to med school to learn some basics about thyroid function and treatment! We seem to be seeing more and more examples of inept treatment by NHS on here.
I've had the radioactive iodine scan several times. They usually make a huge issue out of the giving up thyroxine, as if it's Levothyroxine it should be for several weeks, I've always been on T3 and its 10 days. You need to wait for all the hormone to be out of your body.
It seems like you were yet sent the wrong letter, you should have been going for an ultrasound, but they signed you up for an RAI uptake scan instead.
So what can be seen/determined from an RAI uptake scan that can't be seen on an ultrasound? If I find out that they should have given me an ultrasound and not an RAI uptake scan I will be extremely annoyed that they have wasted my time. I would have thought the Endo who saw me and ordered the procedure would have requested the correct procedure! He knew I was hypothyroid, looked at my blood results and knew I had been on levothyroxine since June. I give him a fairly detailed history of symptoms, meditation and blood test results!
If, however they didn't get it wrong and the intention was to send me to for an RAI update scan I am not happy about having to stop taking thyroxine in order to have the procedure and potentially feel awful again when I have only just got to the point of feeling half way human again! If they do want me to have an RAI update scan and reschedule the appointment I'm tempted to cancel it and not bother as it's more time off work and very stressful for me as I suffer badly from 'white coat syndrome'. I was on the verge of a panic attack as soon as I entered the hospital and spent nearly an hour pacing up and down a small confined nuclear department without any windows only to be told I couldn't have the procedure!
I'm sure you wouldn't be in the nuclear department for an ultrasound. You go there for RAI because it involves having radiation in your body.
Although I understand your inconvenience, it's a bit hurtful to read what you've said for those of us who do have radiation, as yes we must give up thyroxine to have it. For me all three times I've had radiation I've been so slowed down I have almost no pulse, am hardly breathing, my skin turns grey, and I can hardly walk, as well as crushing depression and suicidal thoughts. It's then taken several weeks to be able to get out of bed once I get back on hormone and has lifetime side effects. So it's a pretty serious procedure!
I mainly know about RAI scans for cancer. What happens is that because the Radiation is in the form of iodine, thyroid cells suck in loads of it, the reason you are starved of thyroxine to have it is that this makes the thyroid cells very 'thirsty', once the iodine gets into your body they are very ready to take it in. This means every piece of thyroid tissue in your body is very radioactive.
Then the scanner just detects radioactivity, and produces an image where any radiation will show up as a white glow. This will show where there is thyroid tissue in the body. So for example if you had a piece of thyroid cancer in your lung, this would behave like thyroid tissue and show up on the scan.
In comparison an ultrasound is like they do with a fetus. It will show a picture any lumpy bits under the skin.
I'm sorry if I was hurtful. I certainly didn't mean to be. So please except my apologies if my post upset you. It wasn't the inconvenience of it so much as the worry about taking more time of work after being signed off for 3 weeks early in the year with anxiety and low mood and the anxiety I feel being in a hospital. Having 'psyched' myself up for this appointment the thought of having to go through it again is not easy for me. I never intended to make light of anyone else's worse experiences and thank you for the detailed explanation.
Yes I do think the majority of my anxiety was due to the hypothyroidism and now I am taking thyroxine it has mostly gone.
I just experience it when placed in those situations that are real triggers for it such as hospitals unfortunately! I have always been a very reluctant visitor to the GP as well as hospitals as I get extremely uptight visiting both GP surgery and hospitals.
Anyway I would keep away from the scan. The radiation does no good for your thyroid. Ultrasound is ok and this is what I understand you were going for?
Many years ago my doctor also wanted a specific type of ultrasound of my thyroid but it was to check the nodules I had. This type of scan needed to be done when I had been off of the thyroid hormone for 6 weeks. I told my doctor no way I could manage that long without my medication. So we didn't do that one, however I have had several ultrasounds since then and never had to stop taking my medication before having it done.
Thank you for the information. If they reschedule the appointment I will check with the hospital how long I need to be off thyroxine as I don't want to manage without if it's going to be that long. At the moment I am thinking that I will cancel the scan. I have an appointment with the Endo in June next year so I will discuss it with him then.
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