help please, dont know where to turn

[kidzxpress]

I know this is going to be lengthy, but I really need to know where to turn.  I have not felt well for years.  It all started with an auto accident in aug 2003, I have had 7 shoulder surgeries in which I did not do well with recovery.  I had a hysterectomy in May 2008 and 6 weeks later emergency surgery because the doctor severed a blood vessel in my abdomen and was hemmoraging.  I had been to doctor after doctor, and finally thought for sure my thyroid was off (my moms is) and saw an endo.  He said the problem was with my heart and sent me to a cardiologist, he tested the thyroid just to be sure, and said it was fine.  The cardiologist said my ejection fraction was at 35%  (60% is normal) so they started me on meds, which I did not tolerate so I just stopped taking them and went to get a second opinion.  I am a 40 year old female that was active and in great health prior to the accident.  Now, I am so tired, but only sleep about an hour an half at a time.  Every few months, I have alymph node in my neck that swells and it hurts to swallow, move or touch,  horrible headaches, my blood pressure is usually 80's/60's I fall for no apparant reason which is why I have had so many shoulder surgeries (I have torn the bicep muscle from the bone twice and had to have it reattached) multiple head concussions, and recently fractured my wrist and another concussion from falling.  I have widespread muscle pain, I can pull a muscle in my neck just from wiping off the counter, and back pain that radiates into the legs. I am confusing my words such as red/purple, seeing/hearing, or saying my husband is painting when he is shaving, I put the clothes in the frig rather than dryer.    About a year ago, I started getting horrible hot flashes, just chalked that up to the hywsterectomy (kept my ovaries)  then went to a pain management doctor who started do steroid injections, I felt better and the hot flashes decreased.  I did injections every other friday from decemeber til march, went to the other cardiologist for the second opinion and started a new medicine, the hot flashes and all the symptoms returned, thinking it was the new meds, I called and they changed it, still no help, so I stopped taking it.  Then in late April started back on the steroid injections, the symptoms improved but never went completely away.  In early June I stopped the injections again and the symptoms returned even worse than before, I hurt so bad, have falled at least 45 times, my hot flashes are every 20 minutes around the clock,  I went to my primary care last week and told him we are missing something and I felt I knew, but wanted him to figure it out, and he said what I thought~ Addisons.  He drew labs at 3pm and said he would get back with me on the results.  Well, the nurse called yesterday and said my labs were "fine" and he suggested I go on an antidepressant!!!!  I was so mad to say the least.  First, how can an antidepressant help with these symptoms?  Does this even sound like addisons?  I ask for a copy of my labs and it shows potassium is slightly high, fsh is high and zacth was 16.  I have no idea of what this means since it does not give a normal range.   How would I know if the cortisol level (9.6) is high or low or ok?.  I slept the night before from 1100pm to 1230am then was up til 4am fell asleep again til 6am then up til noon and slept another hour an half. So how would I know normal values with this sleep pattern?   I am soooo exhausted, and unless I take benadryl, I sleep 20 minutes at a time.  any suggestions?  I really need someone to guide me on what to do.  I am so tempted to start taking prednislone on my own to see if it helps, but am afraid to self medicate.  thanks to all for reading this and any info you can share!

[ZENmommy]

My first question is WHERE the heck do you live????  I feel your pain... and I  understand what you must be going through!  I must tell you I have been to 4 Endos and they are were terrible!  I also had 3 cardiologists, 1 pulmonologist and  a Gynocologist. My most recent  Endocrinologist one told me she doesnt "deal with hormones"   She doesnt deal with hormones!  And she is and ENDOCRINOLOGIST???
She also told me that hormones have nothing to do with sleep. Well, I beg to differ with a highly educated PHD  BUT,  our bodies  produce hormones that do regulate our sleep.  I gave up on finding a good  Endocrinologist.
You sound like you've been through HELL  and I feel for you!!!  I  found the most help  for my issues from a Dr  here in PHX that is a not an endocrinologist  but he  sure is  knowlegable and tested my hormones and actually is treating me!!   I had gone for testing at OSHU  in Portland for my pituitary tumor , also  testing for addisons, etc  and  I was told I had borderline low cortsol and should carry cortisol around with me in case I ever get in an accident or get very ill.  My boyfriend was also tested  as he also has a Pituitary Tumor and he was told he needs to take cortisol every  single day AND wear a medical ID  stating he has low cortisol/addisons.  He was then tested again by an Endo Dr in PHX a year later and she said he does NOT have low cortisol so she  told him to stop the meds.... its so very confusing. Every Endo has their own opinion!   Its no wonder your cortisol levels are so messed up considering the stress your poor body has been going through.  I do know that taking prednisone will reallly mess up your adrenals and your cortisol levels.   Stay away from that stuff!  BEST way to check cortisol  is by all day saliva testing.. Its most accurate and really healped me get to the bottom of cortisol issues.  My Dr has the saliva kits and send them to a lab  but you can order your own online.  Best of luck to you!

[kitonthemoon]

There are sites with good doctor listings....
http://www.co-cure.org
is one of better sites.  That's where I got my doctor.  
If you have endo problems...go to National Endo. Foundation, or something like that I cannot remember, have listings to.
I'll try to find it if I can.  You should not be waiting that long, when you life is in jeopardy like that.

Until later,
Kit

[dustybrown]

Where the heck do you live??? Remind me not to move there. It must be scary thinking you have to wait that long to get treatment. What happens if your body goes into crisis? Did you ask them that?  I would stay away from getting any more injections if I were you. Can you find any endo's in any other network of physicians that might be accepting patients earlier than December? If so I am sure you could ask your doctor to fax a referral? Just a thought.

I know in my area there are a few different health care systems and my primary doctor always refers me to doctors within her system, but there might be someone outside of the system that I am interested in. She would be willing to refer me to if I had a name? Browse the internet and see what you come up with?

[kidzxpress]

well, I just got back from the pain management doctor, and yes, I received more injections into my lower back.  The first set of three was at the l5-s1 epidural in december-january.  Then SI joint injections feb-march, then may-june c5-6 (neck) as well as trigger point ijections in the neck/shoulders and today SI joint injections again.  I also received a letter from what I thought was an endo but was he is actually a internal medicine that dabbles in endo.  At any rate, he stated that my cortisol was low and could indicate addrenal insuff. but because my ACTH was 12 that it did not indicate and to go back to my ob/gyn! So I went back and he said that he has no idea of how to treat low cortisol and referred me back to the cardiologist   The labs were drawn around 1030 am but on the lab results it said noon and that I wasnt fasting and I was.  I did go back to my cardiologist and she said she cannot treat my heart condition because my blood pressure was too low and the meds I need would lower it further (77/57) she suggested that I sleep with my head and feet elevated, increase salt intake and is referring me to a endo that she works with closely.  She reviewed the labs and feels it is adrenal insuff. and it needs to be treated so she can treat the heart condition, this makes total sense why I fall because when I went in the first bp reading was 106/64, it dropped when I layed down and again to the 77/57 when I stood up.  The soonest I can get in isn't until december (she was able to get it moved up from feb) and this is at OSU rather than a private practice, she wants me to go there because continuity of care and she will have access to the records easier (makes sense to me) She is also scheduling me for a tilt table test. I told her I was getting these injections today and she said it could be useful in a diagnostic way as well because if my symptoms improve a bit then return it could prove valuable.  Any other suggestions that I can try while I wait to see the new endo?
thanks again everyone for listening to me ramble.

[dustybrown]

Pain management doctors are not supposed to give more than three steroid injections per year into any one particular point of the body. I am surprised by this. It can cause tissue damage and also adrenal dysfunction. I am not sure why so many anesthesiologists get needle happy though? Even my husband had to put his foot down more than once with several pain management doctors to remind them of this issue. This kind of this really bothers me.

[allmymarbles]

You mention that you fall down for no reason. The follows you mention of having extremely low systolic pressure. My guess is that you are fainting. This is not at all uncommon with people who have abnormally low blood pressure.

[kidzxpress]

I just received a call from the doctor regarding my new blood work, the nurse said that the cortisol in low, FSH and LH are high and the doctor does not feel this is an endo issue.  I went on to let her know, the neurosurgeon reviewed the MRI of the brain and in his opinion, the pituatary gland was "generous in size"  she said the doctor has a copy of the report and it did not indicate that.  So now what? where do I turn now?  anyone?
thank you all for your input

[kidzxpress]

Thank you for your words of encouragement,  I am trying to find a neuro endo, but not having alot of luck, so plan to call OSU, I would have to think they would have one there.    I have only seen this particular doctor for about a year, changed after the previous one messed up the hyster and he had to fix things. He is concerned about my potassium being high. Said it could be dangerous and said to increase my salt just as you suggested here.  He is planning to ultrasound the ovaries just to be sure there is no further problems.    Does this even sound like addisons to any of you?  Well, I am taking some benadryl so hopefully I can sleep for more than 15 minutes and get a hour or two.
Again thank you all!!!!

[rumpled]

Endo issues cause heart problems - I see a cardiologist too.
I replace pretty much all my hormones - I am panhypopituitary. If you find the right neuro-endo, he/she can put you on bio-identicals (which, BTW, can be a pain with all the gels, patches and shots but you gotta do what you gotta do) and I take a combo of those and synthetics.

[Mari0109]

Hi Kidz,
I am sorry your going through so much, it is time to find a new doc. specially a GYN or endo who might specialize in natural HRT replacement. Be careful with the neurologist, I went through some of the symptoms you emntioned and the neurologist said was all stress related and wanted to put me on lexapro, I walked out and never went back.
I found a great GYN who specializes in natural hormone replacement therapy and thank God she has changed my life symptoms are gone am working out again and got my life back.  among all your research you might want to purchase Suzanne Sommers book Ageless, where she explains what she went through and all of the research she did to get where she is today.
Good luck to you
Mari

[kidzxpress]

Thank you for your reply!  I have an appointment this coming Monday with the endo that caught the heart issue, which now I am wondering if it is a true heart issue and not addisons causing it.  I see a neuro surgeon/neurologist on wednesday to get the results of the eeg (they think I am having seizures) and the ob/gyn wednesday afternnon, I am taking 2 different hormones and he doubled me on estrogen and still having close to 75 hot flashes a day.  I found one site in particular that explains the muscle pain, heart issues and leg/anklel pain in pretty good detail, which helps us understand better.  I have done alot of research on the symptoms, and my husband and I were stunned at it!   Where do I find more information of how to test correctly?  I will search for a neuro endo in my area, thank goodness for good insurance!

[rumpled]

Your doc should not have drawn blood at 3pm. He is an idiot. Find another doctor. Your K should not be high - that is dangerous. Get some salt into you.

Find a neuro-endo.

BTW, pred is NOT recommended- the half - life is too long and you will not sleep and it will blow your diurnal rhythm. Cortisol has to go up and down for you to sleep. I had no adrenals, had a hyst (use a estrogen patch) and have hardly a gland left so I understand but you need to find a better doctor. And you have to know how to test so when the doc does something stupid, you can get out, or stop him/her.