Dr. Mark etc.

[semona]

Dr. Mark and others-  What is it about Houston that we cannot find a decent Endo???  I too have been dismissed as having depression- hell yea I have depression- I feel like **** and life is passing me by at 51!  Doc do you take out of state patients?  I'll will go wherever there is someone willing to explore, listen and get to the root of whatever is going on?  All routine labs appear WNL- well normal for me is pretty damn wacky then!!  The fatigue and several "flu-like" symptoms have completely influenced my quality of life.  As well, I'm nauseated, have muscle/bone weakness & pain, am constipated, dizzy, and have generalized stomach aches (I go thru about a bottle of Pepto, etc. a week-but of no real value).  Frustration has reached a new level.  Thanks for any advice.... good luck all!

[Mark Lupo, M.D.]

From a thyroid standpoint, if the TSH, Free T4, Free T3 are all ok and the antibodies are negative, this is unlikely to be a thyroid problem -- you did not mention thyroid labs or if you have a thyroid diagnosis for which you are being treated.

Other considerations would be adrenal insufficieny, if am cortisol is >11, then adrenals are okay, if not consider ACTH stim test.

Would also recommend a GI eval with endoscopy given the nausea and stomach aches.

Check vitamin D levels and calcium given the bone pain/weakness -- one thing that could tie all this together is celiac sprue with vitamin D deficiency.

Good luck.  there should be someone out there who can help - sorry you are having problems finding the right doc.  This may not be an endocrine problem, but I imagine you have talked this through with a general internal medicine doc....

[GETtingtiredmom]

I have found it hard to find an endo who cares.  Because of recent insurance issues in our state, one of the better endos moved to another state.  Leaving us with very little choice in endos.  Most of them basically are like, I gave you a pill- what else do you want.  I was having trouble last summer getting into the pool with the kids because the cold was intolerable, the water temp said 76+ degrees and it was hot outside in July and August and it was literally painful to get in the water with the kids.  I sat a lot and missed out on the fun, I love to swim:(  That is when I started to really press that I was not feeling well with my doctors.  The one doctor left the room and I could hear her outside the door telling her assistant that, "This woman is a little excited in here, mumble, mumble..."  It is just devastating to your spirit and hope when they don't think you are really feeling that bad.  Hence they then began ordering an ultrasound, then nuclear scan, we are now up to late Fall, then it took me from late Fall until April to get in to see a specialist, all the while everyone keeps taking blood tests, but no medication changes or anything.  From the April 16th appointment, I am now scheduled for a Biopsy on my 2cm nodule and another ultrasound on June 7th, my first appointment to try and get help was in July 2006, it took almost a year to get where I am and still no medication changes or anything.  I have 7 children, (2 step-children, 2 birth children, and 3 adopted children) ages 6-16.  My youngest three that I adopted are MRDD.  The
children have friends and activities, games, adward banquets, performances, want to have sleep-overs, pool parties, ... you name it... we also have farm animals, 2 dogs, 3 cats, 1 hamster, 1 parakeet, and presently a fish bowl full of tadpoles, I did draw the line at the lizard and snakes my two older boys wanted!!  
Anyhow, I agree with you on how hard and frustrating it is to find an endo who cares and sees you as the valuable person that you are.  They do not see how important you are to others and how important you ability to function in your roles in your life, family, work, activities...  you are trivialized into a case number, just another filler for their appointment slot.  

[semona]

OMG- you are truly running on empty aren't you?  Thank goodness I am retired (early) becoz I would have been fired long, long ago for missing work.  Just with all the children in your life, you need to be 100%, 100% of the time.
I know the feeling of not participating... very frustrating.  

Now that the Holiday is over, I think I'll check with the Baylor University Medical Center in Houston-- hopefully residents/interns/students and their professor docs will have an interest in taking it one step closer to getting me well.  I'm so sick of being told they think it's depression!!  All my symptoms are not caused by depression... I used to work in the Mental Health field and I know the difference between being depressed regardless of your circumstances vs. being depressed BECOZ of your circumstances.  I also worked with Disabled children, so you are truly an angel!  What disabilities do your children have?

I know it must be really hard to stay on top of your own health with so much going on in your family... but if you aren't well, you can't do well.  Good luck in your search!

[semona]

Thanks doc... have been suffering since Sep 06 w/the extreme fatigue, muscle/bone weakness pain, GI issues, HA, sleep disturbances (the gamet), change in vision acuity- blurry and flashing/floating, shortness of breath w/little exertion, heart palpatations, dizziness/lightheadedness, depression/mood issues, memory loss, stammering speech/unable to find words, loss of sex drive, symptoms seem to come and go- I call them surges of good, ok and bed days, constant runny nose and sore throat.  No diagnosis yet... told possibly CFS, checked for parathyroid disease (that was ruled out), EKG and Echocardiogram were negative and in Sep all routine labs were WNL.

So tomorrow I go back to GP and will ask for Lyme Disease blood work.  I seem to have many of the symptoms and it all did start w/flu-like/mono type symptoms.  Was told in Oct I had had mono in the past, but I've never been diagnosised w/it.  Was in the NC mountains in July 06- don't recall tick bite or the typical bull's eye rash, but who knows.

I know there is a strong possibility that there is not 1 thing that will be the explanation for all the symptoms... docs always say it could be lots of things causing these symptoms and tomorrow I'm gonna say "well, name 5 of them and start running some tests!".  I will also ask about the adrenal insufficiency as you suggested.  With so many different type symptoms, I don't exactly know what kind of doc to go to for answers.  Any suggestions?  I plan to call Baylor Univ. Medical Center since I live close;  they have a great reputation for cross-speciality collaboration.  I just don't know whether to see Endocrinologist, Rheumatologist, Immunologist, Infections Disease.... any suggestions?  Psychiatry is certainly on the list, considering how long this has been going on w/out an answer, but I am very in tune w/my body and it is just not right.

So, I go in to doc again making my own suggestions for tx and again will wait for results.... and so it goes.

Thanks for your help.

[Annie62]

Just because you have had a normal calcium level once or twice (I assume that is why hyperparathyroidism was ruled out in your case), I wouldn't exclude it totally in your mind.  I have had fluctuating calcium levels for 13 years (borderline, back to normal, mildly elevated, then back to normal) and I intend to pursue this dx and have repeat calcium levels and PTH done to see if they continue to be elevated---because I believe, due to my symptoms, I could very well have hyperparathyroidism.  I read what you wrote above and you have many of the symptoms of hyperparathyroidism (granted that these symptoms are nonspecific, but, all the same, you have many that fit with that dx).  Just a thought.  

[Korat]

Have you tried the Doctors at: Texas Institute for Reproductive Medicine & Endocrinology, PA..They are on Fannin Street Downtown Houston. I'm seeing a Doctor there but it took two months to get in to see him.  Good luck to you and hugz. I'm in Houston too, nice to meet you and I wish you well.

[semona]

As it turns out, I was hospitalized for 4 days w/ Ischemic Colitis (what a heart attack is to the heart, this is to the colon).  It took severe diarhhea, vomiting, blood filling up the toilet and the Rescue Squad to get any answers and I had just been to the doctor the day before!  They continue to check B12, Thyroid, Metabolic Panel, Brain MRI (If blood wasn't getting to the colon and killed colon cells, it could have stopped in the brain also- results not back on that).  A colonostomy in the ER showed the damaged colon and I'm also scheduled for an esophagus and stomach endoscopy on the 25th.  I have a new doc who is willing to supervise/coordinate al my docs and determine who I need to see for what.  

The fatigue is SOOOOOOOOOOOOOO much better- I haven't felt this good in years.  There are still a few symptoms (can't find words, forgetfulness- short term memory, jittery, nausea), but it is so much better.  I'm hoping all my symptoms are just from this-- No telling how long this has been brewing.  I was released from the hosp on 11 medications, I'm sure the meds are probably doing as much to add side effects are they are doing good.  But luckily the colitis was not infected and so 3 antibiotics have been eliminated.

I'll continue getting the tests done.  Getting 35 pages of records (doc notes and labs for the last year) from Dr. Norman's clinic in Tampa was a godsend to be able to show at the ER and all the other docs, rather than waiting for  each facility to get my records.  

Good Health and Good Luck to all!

Could still have some thyroid problems, but those tests are not back yet.