Please HELP!

[ceetherwood]

This is going to sound strange, believe me I know.

I've been struggling for about 4 years now with myself. Back in 2011, I started feeling rather fatigued after I had my daughter. I felt tired and was constantly having headaches and feeling extremely itchy which left me with these spots on my body that looked like bruises after I scratched. I went to the doctor several times because I thought maybe it was depression. She did some blood work and said I had lower than normal platelet counts, as well as my iron and B12 was low. I went on iron pills again because I've always had low iron since I was 14. It goes up and down constantly.

My platelet counts range between 118 to 140, which the doctor says she isn't concerned about because technically it isn't that low. I am always itchy, and feeling cold and tired. She checked everything - and it all seemed rather normal except the platelets, iron.

I went to see an endocrinologist because my family has a bad history of Addison's disease and the doctor felt it wouldn't hurt to make sure I don't have any auto immune disorders. The endocrinologist said he didn't believe I did - even though I have darkened patches of skin on my face, hands, and underarms. So it left me confused.

I went to another doctor specializing in blood who didn't find anything either, other than a murmur in my heart which she did ultrasounds and said it was a benign "MVP".  I figured maybe it was normal and decided to stop trying to figure out what was causing the severe itchiness and low platelet counts.

In October 2014, I went in for surgery to help treat endometriosis. The doctor said that's what I had because I always had severe pain during sex and very bad periods that lasted forever. After my surgery, he put in a Mirena IUD which he said would help. He didn't find a lot of endometriosis and couldn't explain the pain I felt down there.

After placement on the Mirena I started noticing my migraines were coming more frequently (suffered migraines since I was about 12). I also noticed some personality changes in myself. I went to my doctor and explain this. She gave me some medication for my migraines, and told me that Mirena has been known to cause personality changes and it should level out.

It didn't. Since October I've had strange occurrences with my body. Aside from the personality changes, I started having migraines 3 times a week, sometimes more. When I ate, I wasn't feeling good afterwards and felt a tightness in my chest. I also was feeling hungrier than normal. I went to the doctor and did a pregnancy test twice that came back not pregnant.
Then about 3 months ago I had what the doctor assumed a partial seizure. I was sitting in bed and jolted upright. I smelt something burning near me and I couldn't get the smell to leave. My heart started beating really fast and I felt scared. I started sweating visibly and told my husband I was having a stroke. I started talking to him and told him something wasn't right. I felt uneasy and felt like I was going to die. My chest felt tight and I felt like I couldn't breath. I sat up fully and tried to get air but struggled. I felt dizzy, almost drunk - my heart was pounding. I was seeing double, unable to focus and felt out of body. I felt so light headed and had the lights on front of my face that I was scared to sleep. I asked my husband to stay awake and check on me in 30 minutes because I needed to sleep. I felt so tired. The next day I awoke and felt alright. I made an appointment with the doctor who said she believed I had a partial seizure and wanted to get me a referral to a neurologist.

I was waiting on my referral when I had another abnormal "episode". Was sitting at the kitchen table eating dinner & then started smelling something burning in my nostrils. I felt like I couldn't breathe & my nostrils felt like I had smoke up there. I got the aura in front of my eyes - so I thought maybe it was the spices on the chicken so I moved myself to outside to get fresh air. I still had the smell of burning when returned. I felt dizzy so I left the room completely and went to sit outside.

They just kept happening. Differently each time but somehow the same.
May 10th - woke up lightheaded& dizzy. Kept getting eye twitching on left eye. Had same episode at night after not having any other issues during the day.


May 17th - was sitting talking with friends, left side of my back went numb completely and felt super cold. Got up, started walking & still felt numb and cold. Stood up with back proper and cold continued. Smelled something burning in the house and vision was off. After a couple minutes it subsided.

June 7th- was standing around kitchen table having conversation with family .… felt like I was being pushed into the ground and vision went black. I felt like passing out. I started walking towards the living room, legs felt like I had no control over them like they weren't attached. Went to sit on sofa and felt dizzy and overwhelmed like I couldn't focus. Vision had aura around it and heart was pounding. I was sweaty and felt like I was going to pass out. I had a bad sense of fear like something was terribly wrong. Then the headache started on the right side of my brain. The symptoms started to subside after about 10 minutes except for the feeling of being wrong and lightheaded. I felt tired after and decided to lay down.

June 24 - was getting the equipment to play mini putt. Felt this pressure like I was being forced down to the ground. I felt really lightheaded like I was going to faint. I began walking out of the mini putt place. I felt like my legs wouldn't cooperate and that they weren't even attached to my own body. I tried taking deep breaths to relax myself. My heart began pounding and could feel my pulse in my ears. I sat down and breathed deep breaths. After a couple minutes it subsided but felt very weak and didn't want to play anything anymore.

They just kept happening and while I wait for my neurology appointment, I have no answers as to why I get this. Why my migraines have doubled and why I feel so off all the time. Those weren't the only things I've had going on. I also started lactating out of my left breast. I complained several times of pain in just the one breast. I was sent for an ultrasound after I began lactating and it showed up normal. The lactation is still there. The doctor checked my prolactin levels and they were normal.

So here I sit with my questions. What causes a person to have low platelets, low iron, migraines, pains in your back, "partial seizures", one lactating breast, tightness in your chest, and problems eating/gaining weight?  Please, someone help me. I'm truthfully considering that I have depression and manifesting things because I have no one who can tell me what this is!

[rumpled]

If this happened right after the birth of your daughter I would look into "Sheehan's syndrome."  It may be you had bleeding in your pituitary with the birth.

You need an endocrinologist. But a really good one. The lactation may be caused by other hormones and the prolactin can fluctuate. I had barely abnormal levels and was fully lactating out of both breasts.

Do you get copies of labs? If not, do so. Find an endo and get a pituitary MRI. Sounds like hormones are off, so Sheehan's or a pituitary issue could be the culprit.

[Bumya1978]

I really feel for you! You really have a lot going on! I am not sure why your endocrinologist or doctor have not done a complete blood panel of all hormone and pathologies, MRI's, scans etc to rule out stuff.... There are so many possibilities with the range of symptoms you have.... I think that low platelet can be benign or even because of anemia or have some also pathological causes. Also lactation can be because of high prolactin which I have now. I will really keep you in my prayers. Hugs to you.