Pituitary MRI

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I've been experiencing a range of mainly neurological symptoms for about a year (tingling, twitches, migraines, brain fog...). Finally saw a neurologist who ordered an MRI, presumably to look for signs of MS. The MRI seems to have come back clear for that but highlighted irregular signals from my pituitary. I have a pituitary MRI in 4 weeks but was wondering if anyone else has had similar symptoms in relation to their pituitary?

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15 Replies

  • Posted

    Hi Kimberly, I sincerely hope your next scan is clear but I experienced similar symptoms. It went on for at least 8 years. One day I was scanned to see if the issue with my head was nasal congestion of the sinuses. It wasn't - I had a large Pituitary tumour looking back at me on the CT scan! Over the years they put all my neuro symptoms down to everything else and would not scan my head including when I said that my headaches had changed and become horrific. Anyway, the benign Pituitary Macroadenoma was removed a few months later and I'm now on Hydrocortisone tablets for life to help the function of the pituitary gland they managed to save. The tumour was large enough to have grown in all directions - it was pushing up my Optic nerve to a serious stretching point (I could have lost my sight) it grew out of the fossa area and broke up the wall that separates the sinus!!! With all this happening I'm not surprised that my face, eyes, hands were twitching aimlessly. Please make sure you get answers. Sadly Ive since gone on to be diagnosed with Neuroendocrine Cancer - it seems to be all linked up and is currently under investigation .

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    • Posted

      Thank you for replying Cheer.

      I'm sorry to hear about your delayed diagnosis and cancer 😦 How scary.

      What were your symptoms like before they found the tumour?

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    • Posted

      No problem Kimberly, I know what it feels like to need some answers.

      For years I experienced

      facial twitches which were sporadic

      finger twitches

      my eyesight started to change, particularly in the right eye

      I started to bump into door edges

      Sometimes felt unbalanced

      brain fog losing my train of thought or the words to use

      I often smelled 'burning' when nobody else could or I saw what looked like a smokey room

      horrific frontal headaches that no painkiller could shift - I had to lay down and go to sleep with icepacks on my forehead

      my migraines interestingly lessened but the frontal headaches increased

      my arms developed what they said was essential tremor. Since the pituitary tumour has been removed ALL of these symptoms have GONE.

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    • Posted

      That is good to hear that your symptoms resolved once the tumour was removed.

      May I ask if you're in the UK?

      Any idea why it took you so long to be diagnosed? Had they not done an MRI before the nasal investigation?

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    • Posted

      I live in the UK.

      It was a combination of reasons why it took so long to be found. The main reason is that Neuroendocrine tumours, of which they suspect this was one, are not normally found quickly. I visited the gp on so many occasions, I also went private too - it all came down to one consultant stating it was time to do a scan - no more guessing. The sad thing is, my other symptoms in the abdomen were also not being found until now the cancer has spread to a surrounding organ and lymph node. Do not take no for an answer!

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    • Posted

      It is so frustrating. I'm surprised to hear they didn't send you for a scan with your worsening headaches. I had my first MRI not long after my headaches started, presumably to check for any obvious brain tumours but who knows as they don't really tell you do they!

      What abdominal symptoms have you been having?

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    • Posted

      they tried to convince me that my new headaches were my migraines shifting pattern! go home and keep a headache diary!!

      abdomen - very painful episodes of cramp and pain that woke me up at 4am a few times, then the relentless early morning diarrhea started 4 years ago. Again, I had to put my foot down and demand answers as they tried to shrug it off as IBS after tests were returned clear. It was not until I ended up in A&E in excrutiating pain that the pathway to finding the cancer in my liver began. By this time it was established that this was not the primary source, it had already spread.

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    • Posted

      Hi Barney

      Thanks for your message.

      Yes I have a very good Endocrinologist. Thankfully my pituitary seems to self repairing and is now producing enough Cortisol that my Hydrocortisone has been reduced over the last 18 months to 10mg only in the morning. I am so pleased with this. Hopefully when I have the next Cortisol stress test I will be able to stop using steroids on a permanent basis.

      How are you doing?

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    • Posted

      I am doing pretty well thank you. Waiting for the next shoe to fall, medically speaking 😃

      As to your use of hydrocortisone, I was on that for 2 years after I was diagnosed with Addison's Disease. I was on 60mg for a while before weaning off hydrocortisone in stages.

      If you're on 10mg a day, most folk take it as one go in the morning. I functioned better by taking 5 mg when I got up and 5 mg at lunchtime. They key is to take the total amount in a day. So it doesn't matter if it is 1x10mg or 2x5g or 10x1 mg

      See what works best for you.

      As to cortisol tests, as you know it must be checked say at 08:00 and 17:00 and not just once a day.

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  • Posted

    I am sorry to hear of your troubles Kimberly.

    Several years ago I had a pit tumour removed after weeks of nasty headaches.

    You say you're scheduled for a MRI.

    May I suggest:

    1. That the MRI be a dedicated Pituitary Protocol MRI (i.e it looks very carefully at the Pituitary and is not a general brain scan)
    2. If you have no metal in your body, which may be a problem when MRI scanning, I urge you to have a 3T MRI. The images from such a scanner are MUCH clearer and detailed than the usual 1.5T MRI; and
    3. If the radiologist reports he/she sees a tumour, regardless of the details, make sure you go to a neurosurgeon to provide an opinion on the images. Please note that many radiologists make errors in their reports. In my brain MRI I underwent recently I saw 2 mistakes and sent the report back to be rewritten. No patient should have to do that.
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    • Posted

      Thank you Barney.

      The MRI I'm scheduled to have is a dedicated pituitary MRI, however I don't know if it is a 3T or 1.5 scan.

      What errors did you find in your report? Just wondering how you spotted them?

      My MRI is in about 10 days then it's usually another couple weeks for results so I will update if they find anything.

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    • Posted

      I had a "complication" with my pit surgery. A brain hemorrhage! And a coil was inserted to arrest the bleed. This is a very unpleasant experience.

      I have annual follow up MRIs and so far so good. But the latest radiologist mentioned he "queried the clips" in my brain. I don't have clips! Never had!

      I told the boss of the imaging clinic to get someone who knows his/her job to issue a new radiological report.

      And a new one was issued. All good.

      While 3T is more detailed than 1.5T, the latter is ok. My early scans, which picked up the tumour were 1.5T.

      Usually the report is sent to a specialist who ordered it. I suggest you ask the imaging facility to also either send your GP a copy or better yet, YOU a copy. That way when you see the specialist (or consultant) you can prepare any questions.

      The key thing which I did, in addition to seeing the specialist to whom a report was sent, was see a few neurosurgeons with the images but without the report and let them interpret the scans.

      The best neurosurgeons can do and will do that. The laziest ones, which I met as few of, will read the report verbatim and often not bother with the images or if they do, sadly they will be guided by what the report says and they will not look at it critically.

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