Hi all, hope you're all hanging on in there with this wretched disease.
I have just been to see a new Endo as I am getting numbness in my head and generally feeling very ill for 6 weeks now, mostly bed ridden and having no appetite and losing weight, and so very tired.
Endo has found a Benign tumour in my Pituitary gland.
I have got to have a brain scan and cortisol urinary tests and various bloods taken on Monday.
Has anyone else had any of the above.
Be grateful on any advice please.
Take care and stay safe
Kind regards
Bubba
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A relative of mine was diagnosed with a pituitary tumour about five years ago. They are monitored through yearly brain scans. From my limited understanding, I believe that eventually they may need to have surgery but that depends on their symptoms and or size increase in their tumour.
They also have Diabetes Insipidus. This causes them to feel thirsty and needing to pee very frequently.
It's good that your endo has identified what could be causing your symptoms and that you will be having blood and cortisol tests done.
You poor thing you must feel dreadful. I don’t have any experience with this but wanted to send my best wishes and hope it goes well for you tomorrow. I’ll be thinking of you. Will you send us an update and tell us what it’s like and what you find out? Not sure if you feel up to it but one my yoga teachers recently recovering from a surgery did lots of gentle post op bed yoga, pillow under knees etc. trying different resting poses and holding them for a few breaths. Built up from nothing. Might give you something to do/Google/try out if you feel up to it. Sending you best wishes, 🦋💚🦋
I have got to have a brain scan and cortisol urinary tests and various bloods taken on Monday.
Has anyone else had any of the above.
A brain scan can mean various things, but I would assume that you would be getting an MRI, and this may be with or without "contrast".
Contrast is something injected into a patient and a certain point in their MRI which highlights veins and arteries and make them show up more easily in scan pictures.
I know of two different types of contrast that are used, but there could easily be more. They are iodine and gadolinium.
Having iodine injected causes some odd reactions in the body - people feel warmth sweeping over their body, and one place in particular that it concentrates is in the bladder. People may feel that they have wet themselves (but they haven't). Having an MRI with contrast is not a big deal. If you have a known allergy to either iodine or gadolinium then obviously make sure they are aware of it. But the MRI itself is a doddle. It's very noisy, and at times you will be asked by an electronic voice to "breathe in and hold your breath", then "breathe normally".
Make sure that you don't wear any metal at all, or that you take it all off before the MRI.
MRIs use magnetism, unlike CT scans or X-Rays. They aren't dangerous.
If contrast is going to be used, make sure to drink plenty of plain water in the 24 hours beforehand and in the 2 or 3 days afterwards to help wash out the contrast. If you have any kidney problems mention them in advance, it may change the contrast agent they choose.
There was a recent thread of MRI with contrast experiences :
As for the cortisol urinary tests, I've never had any of these, but I think they might just ask for a urine sample, or if it is a bigger test they may ask you to store all the urine you pass in a 24 hour period in a jug, then hand that it over. But I can't see how this could be a difficult test (apart from tripping over and spilling it! )
And blood tests are blood tests, that you must have had many times before.
Hi, yes I had to do a 24 hour urinary test . which I peed in a jug then decanted into a huge plastic container and had to take it back to the hospital today, this is to check the cortisol.The Endo is checking my Adrenal glands and lots of other Thyroid bloods taken ,
Now waiting for brain scan, I'm absolutely petrified. Hopefully the scan shouldn't be too long as i'm extremely anxious and not sleeping.
I’ve had several brain MRIs this year (discovered a 3mm pituitary lesion after the last scan which we believe might be causing secondary adrenal insufficiency plus growth-hormone excess - currently waiting to see if it requires surgery) and the best piece of advice I received to get through the scan itself was to choose something pleasant to visualise, and then imagine myself slowly and methodically doing it. We’ve got a holiday planned for later in the year so I spent the entire scan imagining myself packing my bag, picturing my outfits, what we’ll do on the day we fly out, etc. It was so helpful and relaxing, and the scan truly went by quite quickly.
I also find it’s helpful to breathe deeply and slowly, and to keep my eyes closed the whole time. Plus I make sure I’m entirely comfortable and my muscles as relaxed as possible before the scan begins, to minimise any stress about movement.
I completely understand the anxiety about the tests and the results, as well as how awful you must currently be feeling. The illness plus the unknown is a horrible, horrible combination. You’re not alone.
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