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Date of last update: 10/17/2017.

Forum Name: Endocrinology Topics

Question: Hypothyroidism, PCOS, Something Else? So many symptoms!

 Tink5686 - Fri Oct 23, 2009 9:11 pm

I am a 23 year old female.

I don't have health insurance, but hopefully will soon. I know I need to see a doctor, but I am hoping for a little insight or support.

When I was about 14 (the date is very vague, as are many events in my life), I suffered a pretty severe bought of carbon monoxide poisoning. It came up from the basement as my brother, sister and I were sleeping. Luckily we got out safely though it was incredibly difficult - sensorimotor function was greatly impaired, couldn't see well, passed out a few times, etc. as does happen with this type of poisoning. I don't know the level they detected in the house but I remember them saying if we had stayed for another hour we'd all have died. My brother had to drag me out of the house as I couldn't walk and kept fainting. I was hospitalized for 3 days. I mention this because it may or may not be related to my current problems.

When I was about 15 or 16, somewhere around there, I stopped having my periods. I went to a gynecologist who said I probably had PCOS but didn't really tell me much about it, only gave me a concerned look like "Are you going to be okay with this news?" I was like ummm sure whatever, you told me to get on birth control and everything will be dandy right? I didn't really understand. Also she didn't do any tests. A few years later I went to see another doctor (the previous had moved her practice), a nurse practitioner actually, and she had scheduled for me to do loads of bloodwork and even an MRI to look at my pituitary gland? I think. But unfortunately I moved away. I really regret that now!

I was on Ortho Tri-Cyclen after that first visit (in high school) for I don't even know how long, a year steadily at least. My periods were fine but the pills made me very nauseated so I really wanted off of them. I also remember this time my hair was falling out like crazy, but I couldn't remember how it was before, so I thought it was normal for me. It is about the same now and my hair has definitely thinned since I was 15. I was pretty active but not incredibly so, my weight and everything seemed fine around this time, I have always been a nice weight, not a twig but always a size small (I'm 5'0!) I remember being exhausted ALL the time. Teachers wrote on my report card "Appears to need more sleep" pretty much every quarter. If I sat down for more than 10 minutes I would just become so tired I couldn't keep my eyes open. Although I honestly didn't eat very much - a rough home life led me to eat school lunches and then whatever I could find in the cupboard for dinner most nights. I can still fall asleep at literally any time (with anything going on around me, even loud parties, happens all the time) even though I eat normally. I always remember being like that. I have always craved about 9 or 10 hours of sleep a night as well. I get 8 consistently and still want a nap during the day and my legs often have that tired feeling in them where sitting down feels like heaven. I have also always been very cold, shivering when it's 72 in the shade, but then at the same time in the summer not tolerating the heat like everyone else, feeling my face boiling and my heart rate going crazy when I was hot. I remember once showing my mom my thighs and asking what was wrong with them because they were all purple and blotchy. She just brushed it off.

I went off and on the pill for years. I honestly can't recall for how long I was on or off because I was all over the place. Every time I took the pill, I felt as if I were gaining weight especially in my breasts and I felt awful. Plus, they took my sex drive down to basically nothing which is not pleasing to my long term partner. Every time I was off the pill, my periods completely stopped. I tried not to stay off for too long because of endometriosis risk, but I have been off for about a year and a half now because I was finally fed up with it. My hair has thinned so much that I'm afraid to get back on the pill. I have no idea if it has had any effect on the way I feel and my hair so I'm afraid to try anything before I have some answers! For the past 4 or 5 months I have had my period, on my own, every month. Only god knows why!

Right now, I am experiencing what I think is puffiness in the face, or something. It just seems larger and not like I used to be. These episodes come and go. Sometimes I'll have a few months where my face is thinned out and I look great, and then suddenly it will get all "masculine" as I call it again. Everyone tells me I look the same, "just older" but I have photos to prove these changing periods throughout the years, back and forth. I know my own body! Also coming with these periods is a lot of bloating. I don't know if there is weight gain. I FEEL like I have but it may just be bloating. And it's all in my abdominal area. I have a pregnant belly during this episodes. And of course I'm fatigued as usual and just feel like general crap.

But why do these boughts come and go? Is that normal for someone with hypo or PCOS? Or am I borderline or something? I exercise and eat well. Also, I seem to have low blood sugar or SOMETHING because I almost always crash after I eat even if it's just a snack. I get very hyper after eating most of the time. Even during my good times I still have excess belly fat, but I'm thin everywhere else. No bloating and distended tummy though like during the bad times, just unproportionally fat there. And another thing, I tend to feel better when I don't eat very much. When I eat maybe 1 medium meal the whole day, the next day I feel better. That's how I grew up, maybe that has something to do with it? I have been eating regularly and sensibly for months (I find nutrition interesting and fun for me) in the hopes that I could speed up my metabolism (I'm exercising too) but all "eating normally" has done is made me bloated and "fat." I want so badly to go back to eating very little because it makes me feel so much better. I feel more energetic and free-er... if that makes sense... I actually feel like getting up and stretching and running and ... I feel more mobile. Not as weighed down.

And the last thing that has been happening since I was teenager (10th grade to be exact) are these horrible episodes of TREMENDOUS pain in my lower lower abdomen, always on the right side. Seriously the worst pain ever. It always starts out as a cramp, then gets worse and worse until it reaches its peak by which I've usually taken medicine so it comes down. The pain is not only localized there but spreads almost to... my anus? I don't know how else to describe it. If I try to sit down on my bum, there is a shooting pain up that area where my anus is and through my lower abdomen. The last time this happened was about 2 months ago, and I was in the city without medication. It was by far the worst that I have ever had. I don't know if that is because I didn't take medication right away or what. But I was wishing for death that's for sure. I felt like I had to use the toilet but I tried and didn't have anything. I have these about 5 times a year maybe?

So, there you have it. Sorry it's long, but there are so many things to consider. Thank you so much if you've made it to this point, I greatly appreciate it! Please ANY insight or "me too" or ANYTHING would be fantastic. Thank you thank you.
 Dr.M.Aroon kamath - Thu Oct 29, 2009 2:41 am

User avatar Hi,
Firstly (for the sake of healthy discussion) let me try and give an alternate explanation for the 'central' obesity of yours.
Firstly let us assume that you indeed have PCOS.
You say that "I can still fall asleep at literally any time (with anything going on around me, even loud parties, happens all the time) even though I eat normally."
If that is the case,can the following happen?
- You sleep most of the time, therefore your resting energy expenditure is likely to be very low (thus whatever 'little' you eat, may happen to be more than your basal needs - thus contributing to obesity)
- Your muscles are likely to waste because of under-usage and therefore your limbs are likely to appear comparatively thin
- as a part of PCOS, out of the overall obesity, only the central obesity is remaining(central obesity would probably be the last to go).
- your face may look and feel puffy (natural for a person with very irregular sleep patterns + of course PCOS)

You see, i was just trying to connect up some of your clinical features to PCOS (which is perhaps your underlying problem) - so that all most of your symptoms can be brought under one umbrella (PCOS), rather than attributing some of your symptoms and signs to other diseases such as hypothyroidism. cushing's syndrome, Carbon monoxide poisoning and the rest).

Thank you for your interesting post.
Best wishes!

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