Do I have a Pituitary Tumour/Cushing's disease?
Okay, I am really sorry if this is long. If you could read this I would be very greatful, I am worried
I am an 18 year old female. I have not had a period in nearly 6 months, for the past few years my periods have been irregular, sometimes the gap between them can be 3/4 months, or even more.
I have noticed since 2010, I have started putting on weight on my stomach area ONLY. Before, I used to have a very flat stomach and small waist. Now, my stomach almost looks like I am having the menopause, it has gotten much fatter, and it is continueing to do so, and I don't know why, my legs and arms are putting on hardly any weight though in comparison.
I have started to gain alot of weight, when before I wasn't, even though I jog 4 times a week and hardly eat, I am a UK size 14, I used to be size 10.
My face has put on weight, my chin used to be slim, now my chin has become big and fat. I can't wear ponytails because I'm self concious. I don't have a defined jaw line like before, my chin seems to be getting bigger every month. It's depressing me.
My cheeks are constantly red, if it gets warm or I excersise, they get very very red. Even though I have olive skin. I sweat alott, I shower every morning for 45 mins, but at the end of the day I feel hot and unclean, my hair gets very greasy too, even though I wash it daily. I get warm easily, in the winter I would go out without a jacket and still feel okay, I would never wear a big jacket because it would make me sweat too much. In summer, I get overheated alot.
Pretty much my whole body has started to become significantly hairier. My eyebrows, nostrils, legs, arms, knuckles, sideburns, private area, underarms, stomach and above my top lip. I used to have extremly fine hair before compared to other people. Now I am as hairy as them, sometimes more.
My hair has become brittle, and I get split ends alot, even though it's greasy.
My teeth have started changing, I never needed braces, but all of a sudden, they have started to become crooked, I get tooth aches alot, infact I have one right now. I know tooth changes can be caused by the jaw getting bigger. Maybe this is caused by 'moonface' acosiated with cushings and pituitary tumours, where too much cortisone is realesed as a result of a pituitary tumour.
My vision has gotten worse, I used to have pretty much perfect vision up until I was 16. Then all of a sudden it decreased by -1.5 in both eyes, a year later, it had decreased by another 0.5 in both eyes.
My shoulders, have began to change to a strange slight 'hump' like shape. My posture has become very bad because of this, and my neck feels very tight and wound up. My neck looks as though it is pushing against my shoulders which are drooping forward. My neck looks like it has become alot shorter than it was too, and the skin/fat around it is hard, tough and lumpy. My neck, armpits and inner thighs have discoloration. I have a discoloured line going across my neck. I have purple/pink stretch marks on my inner thighs.
I have noticed I have been getting a few wrinkles on my face too. I do not smoke so this seems odd, I have lines around my eyes and a few small ones on my forehead when I smile.
I have a lump behind my ear (where the pituitary gland is) that has been there since I was like 12. I thought it was nothing, though it seems to have been growing slowly, as through the years it seems to have gotten bigger. When I touch it, it doesn't hurt. Though I can feel it starting from behind the top part of my ear, to the bottom of my jaw. Last time I checked, it wasn't that long. I'm really worried about whether this is a pituitray tumour.
My memory has been all over the place lately. I walk into rooms, and sometimes forget why I went in. I don't remember peoples names easily. I forget appointment times, where shops are, and what day of the week things happened.
I have had epilepsy in the past (first seizure when I was 14, had 4 in total) so I was wondering if this could be linked to a tumour.
I have also felt down and had a lot of anxiety for the past three years. I don't know if the hormones from this tumour would have caused this. Because I have at times felt suicidal and unstable.
At night before I fall asleep, I tend to for about 20 minutes or more, keep waking myself up by having these 'spasms' where my body jolts. My whole head and body will shake and I will wake up. I noticed this happens more when I have less sleep. Also, if I don't sleep enough I get eye twitches, where my eye will twitch by itself. I also feel extremely tired in the mornings.
Twice, I have woken up in the middle of the night and seen things which weren't there. Once, I woke up at around 2am, the light was off, I checked my phone, and then saw the figure of a girl standing by my bed. I was extremely scared, but she was smiling so I thought she's probably not evil. Then she faded into the furniture! I went toilet, then fell asleep again. Another time, I saw the figure of a middle aged man dressed as a clown by my window. I was absoloutely terrified because he looked really creepy. Then he faded into the furniture too, before I fell asleep again.
I know I have pretty much all the symptoms of a condition called 'cushings' yet my doctor wants to do an ultra sound to check for cysts on my ovaries. This would not explain the growth of my chin, the 'hump' like shape of my back and the lump behind my ear, my bad memory and also all the stress I have been feeling lately. The fact my body/face is changing so much depresses me. I am someone who likes to look their best, so this has been pretty hard, especially because my family think I am being vain, and my teachers think I am superficial for being insecure, and that I'm causing my insecurities to happen because they think I let myself get fat, when I didn't.
If anyone could give me an answer I would be very greatful, because I am tired of not knowing what is going on. I don't know if my doctors will let me get tested for cortisone imbalances. Anyway, do you think it's likely I have a cushings or a tumour? :confused: To be honest, I would rather just find out what has been causing me to constantly feel tired and why all these changes have been happening so I can get it all sorted.
I had Cushing's myself. You do sound consistent with many of the symptoms but your doctor is going the PCOS route.
BTW if you had pituitary source... it would not make a lump behind the ear as the pituitary is rather situated behind the eyes, sinuses in the center of the head. But we do get rather funny fat spots. We do get sleep problems - but I don't think the ghosts are related. There are many of us diagnosed with depression, bipolar and more as the cortisol does do a number on us - and it for the most part resolves with treatment.
You need a better doctor to do testing - as even if you have PCOS you can still have Cushing's (I did) so one does not preclude the other. Cushing's can also have other sources not just pituitary so you need a good doctor to find the source to treat it properly.
Does your eye doc do visual fields or check the optic nerve?
thanks for responding. I have made an appointment with my usual gp (she wasn't available on the day I went to see the other doctor) though it will be in two weeks time. I'll speak to her about whether I can get reffered to an endocrinologist.
Yeah, since 2010 i've been on-off depresed, I began self harming because I couldn't cope with stress anymore, and would have bad mood swings from one hour to the next. Sometimes I get panic attacks. It's like I can't cope easily with small things these days, wheras before I could.
I don't know if this would be related, but, I started seeing the weight gain on my stomach suddenly appear in 2010 when I started doing alot of excersice. I would do like 2 hours (sometimes more) walking everyday, and that's when I started noticing changes to my jaw/face shape, the buffalo hump and lots of quick stomach weight gain, but no where else. I wonder if maybe this caused me to release more cortisol and now I can't regulate my amount or something. Though my periods had been irregular before that. I noticed today the bottom of my hands have started growing hair, which was never the case before. I'm getting hairier pretty much everywhere.
Though what I think makes it more likely I have Cushing's rather than Pcos is that my face shape has really changed. My chin is not defined like it was. I've been completely baffled as to why this was happening for the past 2 years, I thought maybe it was me getting older or something. And the fact I am always overheated/sweating and my face red makes me think it is likely.
I don't think my optician checks for those, she just does a usual eye test, though she did say it was slightly strange for my eyesight to get worse over a small amount of time like that, though I just though maybe it's because I'm becoming an adult.
And yeah that was what I would be worried about. Because if they find I have pcos then they might just ignore my other symptoms and they might get worse. But I will speak to my gp and see what she says, thanks for your help
A GP is a great place to start - but do keep in mind Cushing's is regarded as rare so... unless you have a really excellent GP, it can be difficult to convince them to do testing as there is some weird quota on rare diseases and the doc feels they will never see it...
Endocrine diseases can be hard to diagnose - it can also be another disease besides Cushing's - so you have to test for a lot of things to rule it in or out.
I just wanted to add that because of the jaw changes make sure that growth hormone issues are also ruled out. High growth hormone can cause acromegaly and it causes lot of the same issues as excess cortisol. When you get referred to an endo make sure that you bring this up too. One lab that your GP can order is called an IGF-1.
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