An MRI of my pituitary gland last week revealed a 13mm "simple nonenhancing pineal cyst". My pituitary was being imaged for thyroid problems I've been experiencing for the past three months (fluctuating TSH leaning more toward hypo despite elevated RAI uptake, a litany of symptoms like my neck being swollen and tight on one side, etc.). In addition to experiencing symptoms most clearly related to thyroid problems, I have also experienced terrible headaches that seem to be increasing in intensity of pain and pressure, & sometimes leave me feeling really nauseous & occasionally dizzy (I actually threw up in late April as a result of one of these headaches & almost did this in late March, too).
I've experienced headaches my whole life, but my doctor at the time never seemed to worry too much & everyone seemed to write it off as a result of allergies. I'm becoming increasingly worried due to just how bad the headaches are getting & the fact that my vision changed dramatically over the past two years according to my optometrist (it got 3 - 4x as worse as it usually does over a two-year timespan), my eyes are becoming extremely photosensitive especially at night, & when I'm driving at night & looking at a road sign illuminated by my car's headlights, I can see a second, though much lighter/fuzzier image forming. During the day, I'm seeing "floaters" more often. I was also diagnosed with obstructive sleep apnea last summer, though I'm not overweight, don't snore & no 'obstruction' was ever found.
What course of treatment, if any, would you recommend for this? What do "simple" and "non-enhancing" mean in relation to this cyst? Is it guaranteed to be a "cyst"? And finally, do you think there's any way this cyst is contributing to my thyroid problems by affecting my pituitary gland? I'm a 22 yr-old female, onset of symptoms 4/2008 (headaches started getting bad around 3/2008).
In general, pineal cysts are benign lesions and a good number of people in the general population have them. Your symptoms sound complex and you may benefit from an evaluation by a neurologist or a neurosurgeon.
I too have a pineal gland tumor. Mine is 6mm or so and stable. If the image is very well defined and rounded then they tend to be pretty confident that its benign. If it develops spider leg like infitration then its much more worrisome. They can change according to my neuro, hence the annual MRI recommendations.
Typically they do not operate to remove these as they are pretty deep and hard to access. Gold standard care, is to have annual MRIs or more often if you have any neuro symptoms. What you describe could well be affecting your vision. Get a second opinion. If the area impinges on your brain ventricles it can cause headaches that are a result of the cerebrospinal fluid not flowing properly and causing a type of hydrocephalus, for want of a better way to describe it. However an MRI would have shown that by showing an enlarged ventricle. The pineal gland is also responsible for sleep hormones, so sleeplessness is often a symptom.
Optic nerves can also be impinged at times too, so any visual changes, you should remember to mention to your neurologist.
The cyst vs mass Question: is the same as I described above, its a well rounded and clear margins they see on the MRI, vs an indistinct mass that has spider like legs that infiltrate.
Hope that helps. Have you seen an endocrinologist for your thyroid issues? If not, put that on your list of things to do, they are also well versed in pituitary and pineal gland issues - basically anything hormonal they are experts.
Hi Fiona, thank you for your comments--they were very helpful. If you wouldn't mind taking a look at some of my MRI images, I've posted them on my profile under Photos. I'm not really sure how smooth a cyst should look like, whether the edge-enhancement is something to worry about, and if it looks like something is leaking into it (I labeled this on one of the pictures, so you should be able to see what I'm talking about).
I saw an endocrinologist for the first time last week, and he apparently didn't spend much time looking at my file, even though I saw in the examination room for nearly 40 minutes. He didn't even know the size of the pineal cyst--and he had the radiologist's report and images--and told me that I would have to see a neurologist for this. When I tried to ask him some questions about the pineal cyst potentially causing thyroid problems, and he said that he was only going to discuss my thyroid since that was the reason I came there (even though he didn't know the reason I was there until I was actually in the office and filled out the paperwork--I didn't have a referral since my insurance doesn't require one). He also didn't even look at the MRI images for my pituitary, and said he would never have ordered that knowing my bloodwork results (slightly elevated TSH--4.05 then 5.45), so he wasn't very helpful at all, and eventually told me I didn't have a thyroid problem after he had initially suggested I have thyroiditis.
I think I'll be visiting another endocrinologist, but this time I'll be patient and wait for a good one. I'm going to try to get into a neurologist as soon as possible, because with all of my symptoms and the MRI results, I'm guessing I either have lupus (which is autoimmune and can effect many different organs, including the thyroid), or a pineocytoma, which looks like a pineal cyst on MRI images, but can cause tremoring (rare) and put pressure on the third ventricle (which might be causing only one side of my neck to swell, in addition to vision problems, headaches, and some intracranial pressure). I would like the doctors to test my melatonin levels to see if they are elevated. This could explain my extreme fatigue and would also be indicative of a pineocytoma. I also need to figure out if my sleep apnea is caused by hypothyroidism or this pineal cyst.
I'm 22 and I feel like I'm aging well before my time. :( I'm also really worried that these problems are causing permanent damage in addition to making me feel terrible all day every day.
Julia, I am in the same boat. The endocrinologist I was sent to did NOTHING, just disdainfully dismissed my questions regarding the connection between my pineal cyst and my weird thyroid tests, very low blood pressure and headaches, which, like yours, have gotten worse. If you find out anything, would you PLEASE let me know...I am 45, and also feel like I am 90. According to this "expert", there is NO connection between a pineal gland and thyroid dysfunction. What a crock.
WE ARE TOO YOUNG TO FEEL THIS WAY. Doesn't ANYONE have a suggestion for treatment?
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