Possible Pituitary problem, Arnold Chiari Malformation, LVH and more

[LG0526]

Hi.  I have a few questions  I have seen a lot of doctors and am still being in the process of being diagnosed I am just really hoping to find something or anything about about what might be going on because I have been sick a long time.  I do feel that it is hormone related, but I am not a doctor.  I really appreciate any advice or opinions as to what these things that are going on with me sound like.  So, thank you in advance.

In August 2008 I had an appendicitis.  I developed a bad wound infection with Strep and E coli.  The infection cleared up with antibiotics, but I have only gotten worse.  I am seeing many doctors and just wanted an opinion from anyone out there.  I also had surgery for a kidney stone in September.  I have been out of work for 3 months and am really desperate to get better.  During all this they found that I have extremely low vitamin d and b 12.  I am being treated currently for both.  I have been to the hospital more times than I can count, but they send me away after 12-18 hours.  I know I am a complicated case it is just really hard to be sent home in pain with no answers.  I don't take pain medicine because it does not work.

This all started 3 months ago, around the time of the appendectomy.  I had the worst headache I have ever had and I was having trouble seeing.  My vision was very affected in my right eye.  I went to the ER a few times when it was too painful and they said it was "just a headache".  My blood pressure and pulse go crazy and fluctuate.  In less than a 3 hour period my blood pressure went from 175/113 to 96/60.  My pulse is ALWAYS over 100.  It has gotten to 165 and that is completely resting.  Normally its around 130+.  I also have fever of no known origin.  It comes and goes usually everyday, but the highest it has gotten it 100.8.

I went to the eye doctor about 2 months ago and he told me that I had inflammation in my eye and that he thought I might have increased intracranial pressure.  He referred me to a Neurologist and I was seen in a week.  Prior to seeing the Neurologist I started having really bad numbness and tingling and muscle spasms.  I had a brain MRI and it was all normal.  He was still worried about the IIP so he did a spinal tap.  It showed that I DID have increased intracranial pressure.  The Neurologist put me on meds to lower the pressure called Diamox.  I also take Lasix because I retain fluid for no know reason.  I have lost 8 pounds in 24 hours because of fluid retention.  I was having a lot of pain in the back of my head at the same time and my neck was really hurting so he ordered a C-spine MRI.  It showed that I have an Arnold Chiari Malformation.    

I also saw a cardiologist and they did and echocardiogram.  It show LVH- left ventricular hypertrophy because of the high blood pressure.  I have only had high blood pressure for 3 months.  How could it do damage in such a short period of time?  They said other than that the heart was fine.  I take Metaprolol ER 100mg.

My lipids are fine, cholesterol is fine, no diabetes, etc.  My Internal Med. Doctor says that hormones can make BP rise and fall as well as make me have fever for no known reason, sweat like crazy sometimes, etc.  The neuro thinks that hormones are the problem and so they say I should see an Endocrinologist.  They bloth think that I have a "disfunctioning" pituitary gland.  The Neuro said that with the Arnold Chiari (or herniatation) could aggrivate the pituitary and cause problems there.  I also do not have a period and am not pregnant.  I am just really afraid to have to start right back at square one with a doctor that might not have time for me and all the weird things that are going on.  I have lab results below if it helps.  Anyone that could help or has an opinion I would really, really appreciate your feedback.  I am just really ready to be better and don't know where to go next.

Did I mention I am only 24 years old?

     Labs:
     Estradiol - 42
     Follicle Stim Hormone - 7.2
     Progesterone - .2
     Intact PTH - 7
     T3 - 135
     Free T4 (Thyroxine) - 1.08
     TSH - 1.2
     Estrogen, Fractionated:
          Estradiol - 22.7 (LOW)
          Estrone - 13.1
          Total Estrogens - 35.8
     Cortisol - 8
     Pregnenolone - 39
     Sex Hormone Bind Globulin - 17 (LOW)



So recap:
Low Vitamin D and B 12
No menstrual cycle
High Blood Pressure that fluctuates between high and low in a very short period of time
Very rapid pulse
Inflammation in eyes
Numbness and tingling and burning (very painful)
Muscle spasms
Arnold Chiari Malformation
LVH - Left ventricular Hypertrophy
Hair is falling out and changed texture
Worst headache ever had
Dizzy
Extreme fatigue
Fever of unknown origin



Thanks to any advice.  

[truthsoularmour]

Hi! How are you?  I read your post and and immediately felt like Wow! perhaps I have a twin out there :).  I am so sorry for what you are going through.  I have many of the same issues myself and have been struggling for many years to end the suffering.  I am having some luck.  It sounds like you have at least been able to get some valuable information from your resources. A few questions, if youy don't mind an then a few recommendations.   Where are you living,  how old are you, what are your arrangements in terms of family/friends.  Not that it matters per say but what what is the herniation in terms of mm and do you believe it is congenital or perhaps from an acquired truama.  If so, when what.  If not, do you know how your Moms health (physical, mental and emotional)  was before during and after your birth. Any complications or early life issues physical or otherwise  (bonding/attachment).  What is your age and at what age did your symptoms start? Become disabling?  Do you have a medical apptitude, are you intuitive?  Spiritual?  Regarding horomones, how are your testosterone and prolactin levels?  You said calcium was high, how about Mg and K +.  Do you drink water regularly, get to spend a daily amount of time in the sun?  Eat well....or at least supplement based on whole foods?  Do you walk regularly outside, participate in hobbies, have at least a few strong close social bonds that you can really confide in....etc?   One thing that you may try is Robaxin, it is a muscle relaxant can be taken at a lower dose (500 mg) up to 4 times a day.  I hate medications have tried everything on your list and then some.  Robaxin has significantly improved the daily cycle of headaches...I don't even have  to take it that much or everyday.  It doesn't add to the fatigue in fact it often reduces the pain which increase the flow of  energy. Yes, there are days I have to take 750 mg may be 2 at most 3 times but those are usually PMS times (or should be but most time period is delayed absent and fluid issues fluctuate, fever seems to be more noticeabe as well.)  Sunlight 15 mins a day if you tolerate it because natural vit D is essential.  Taking the right kind of ca in combination with mg is also key.  I highly recommend supplements based on whole foods only and actually in the form of a prenatal vitamin based on whole foods can often be helpful because it accounts for so much of what we lack.  Drink water daily.  Most importantly, don't buy into anything not what a Dr. tells you, not what doesn't validate your objective experience. It's helpful to keep short daily journal.  There's a book called THe Brain that Changes Itself.  No matter what the reality is of what ails us I believe that you hold the keys to happiness notice I didn't say 100 % health.  Sometimes pain serves a purpose if you can at least figure out what that is it can become a tool.  Instead of the tool shed you are confined by it can be used to help you figure out what your truth is and to accept it anf to live it to the best of your abilty.  I wish you the best of luck...you will be in my prayers!!        

[estrelinha]

The cathecolamines in urine sometimes are normal, you must test them in serum (look for possible pheochromocytoma), the ACTH is measured in a blood analyses, I'm sure the doctors checked you're sodium levels at hospital. Endo is really the right doctor for you.

[LG0526]

I don't know how my sodium levels are... I don't think that has been checked yet.  My calcium level is low.

I did the 24 urine test for the catecholamines etc and they were within the normal range.  I have good days and bad days.  During the 24 hour period of time I did the sample I was having a good day.  My doc said that there is a serum test that is more reliable that we will try.  

How do you test for ACTH?  I have not had that done.

I have an appointment with the Endo next week I am just trying to cover all my bases.  I have been passed around to soooo many doctors and have only had luck with 2 or 3.  I am apprehensive that they will just give up like some of the other doctors since I have so many different things going on.  

[estrelinha]

About your fluid retention, how is your sodium levels?

[estrelinha]

How is your calcium levels?
About blood pressure going high in a short period, have you tested for cathecolamines (blood and urine), renin, seretonin? (just a thought),and ACTH? really you should go to an ENDO, all these are related to hormones. Your extreme fadigue can also be related to anemia, your B12 is low, how is your Hemoglobin, feritin, red blood cells count? I agree you must look at your adrenal glands (aldosterone, cathecolamines, etc..........).

[bharrod]

Yes, it sounds like you may have a special type of hypothyroidism called type 2 and also you may have adrenal fatigue as well, read this article, you will need to go to Johns Hopkins Hospital website, I think it's called Hopkins Medicine, then type in (in the search area) = Adrenal Insufficiency. There you will find the answer to your problems, I believe.
Mia