Hi all, after randomly finding elevated serum prolactin levels 889 (range 102 - 496) during a Medichecks Advanced hormone panel recently (while still battling to get a diagnosis for hypothyroidism), the GP has ordered me a head CT scan after repeat prolactin testing (tomorrow).
I’m pleased he’s being proactive but after checking online it appears that an MRI is better at detecting pituitary adenoma, especially if it’s small. Is this correct?
“A CT scan is faster than an MRI, but the image is less detailed. It may be difficult to identify a pituitary tumor on a CT unless it is particularly large”
If so I feel like I’m being set up to fail again - similarly to when they took my bloods at lunchtime and my TSH was in range and so now I’m now classed normal (despite x3 out of range private thyroid tests before 9am). Same thing happened with my ECG. They ran a 20s trace which came back as ‘borderline’ but later appeared in my NHS app at normal, so no further action.
The other thing I’m a little concerned about with a CT scan is it uses X ray and over the last 5 years or so I’ve had many X-rays/MRIs for various injuries/dental. Maybe 8 in total (not including the rest of my life). I know the amount is small but don’t really want anymore radiation if it’s not going to give accurate results and needs repeating ☢️ . Here’s me using fluoride-free toothpaste and a water filter but getting hit with radiation 😂😂😂
Any advice welcome x
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GussyG
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I’d say you need an MRI with contrast for the most complete method to detect a pituitary micro adenoma.
My daughter has just been diagnosed with 2 pituitary micro adenoma.
It took 4 hospital visits to complete a scan. First attempt was cancelled because she’d had previous operation & dr was worried she may have metal fragments left. We had even called in advance about it. 2nd visit to have X-ray. 3rd visit to have scan, then a called back for 4th time as wanted a scan with contrast.
Very high prolactin levels can be due to Prolactinoma, but from what ive read high prolactin can also occur with hypothyroidism.
I'm quite sure an MRI is more appropriate than a CT simply because of its better resolution. Then add in your valid concern about radiation... No contest.
Thank you both. With further reading it does look like the best method. I’m not sure what to do now as my GP is highly unlikely to see me before the appointment (we’re on a 3-4 week wait for anything that isn’t a severed limb), and I highly doubt he’ll change it. He was following some guidelines on his computer when reading out what to do next and I’m sure MRI is more expensive. Everything is cost cutting. I’d almost rather not know than go through it and know it may not show up but still be present. That’s really going to mess with my overthinking. Meanwhile I’m still have horrible symptoms of hyperprolactinemia on top of hypo symptoms. I’m feeling absolutely dreadful and barely functioning. I’ve also read that it can be a symptom of hypo and not necessarily adenoma, so perhaps it’s time to push on and get that fixed first (private or self sourcing if needed) and see if levels come down/symptoms improve. Am I being crazy to turn down a CT??
Thank you both SlowDragon and helvella for the info. Having a read through it all it has provided some relief. It sounds fairly straightforward rather than this scary ‘tumour’ talk which I’ve been having with myself. It does all seem to stem from the thyroid.
Next step is to keep hounding the GP for an appointment and treatment. Will have to tackle the CT vs MRI as well 😏
Just reporting back on this. I spoke to the GP this morning and he told me he’s unable to change it to an MRI in primary care. They only offer a CT scan. I explained it’s not the scan of choice due to only being good a detecting large tumours and many are small, but he couldn’t do anything. I told him I didn’t want it if it’s not accurate (I’m not being fobbed off again on something like a flipping pituitary tumour…I can see the NHS App now noting ‘normal’ next to it like every other thing I’ve raised and they’ve been wrong about) and then he saw that my repeat prolactin was still nearly 900 and has referred me to an Endo. Quite annoying he remarked ‘it’s only mildly elevated’ when the lab range max is 496. I’m glad I’ve been referred but god knows when I’ll see an Endo….fingers crossed it’s soon, but I’m not expecting miracles! Menstrual cycle has dropped to 10 days long, I’m up peeing all night, head is pounding. It’s highly unpleasant.
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