Hello. I am really hoping to get some insight on what could be going on so i can become healthy enough to return to work. i am concerned with cyclical cushings, secondary addisons, hypo/hyper parathyroidism, hypothyroidism, endometriosis, insulinoma, MEN2, polyendocrine neoplasia. I realize these are rare conditions and a lot of my labs have been within normal ranges but have been borderline high and/or borderline low. these symptoms are hard to back up on the bloodwork because they fluctuate like a roller coaster and are never "obviously" detectable on lab work or imaging, but in 5 years of researching all possible causes of the combination and nature of my symptoms and their relationship to each other, the above are the possible illnesses that consistently come up.
I am concerned about cyclical cushings, and now secondary addisons, because the specific symptoms when all of this began back in 2005 seemed to consistently point towards early menopause. i am 32 now. My main complaints were severe hot flashes, extreme mood swings, gained 40 pounds around tummy in 3 months, acne/heat rashes, irregular periods,high cholesterol, red stretch marks, body odor changes, hair falling out, round red puffy face, chronic constipation, sometimes dark green pine colored stools, frequent bladder infections and occasional kidney stones, stomach cramps, recurrent breast/groin/armpit cysts, social phobias, depression, confusion, loss of sex drive, painful sex, heart palps, short of breath, body hair growth. historically drs have been unconcerned with my symptoms because my labwork has not screamed of something being wrong, but i have to wonder if the correct tests have been ordered and if the doctors are discrediting symptoms and family history based on labs that might not be sensitive enough, or false negatives, or not considering that my labs coming back within "normal ranges" of all people are not accounting for what is normal for MY individual body, and not being tested at the time of specific symptoms, as examples.
I finally have a few abnormally low, and a couple borderline low, hormone tests that i believe support my hormonal imbalance theory. there is also much family history of endocrine/stomach/colon/adrenal/throat/breast tumors(cancerous and benign functional tumors) and/or diseases of those organs in immediate family and those over the past 4 generations, in ALL members all on my mothers side. fathers side is unknown.
abnormal lab results started to appear with high liptprotein, low vitamin d, abnormal pap but normal ultrasound, low but above normal ca-125 that doubled in 6 months prior to what i think was an adrenal crisis. that was when i was hosptialized for 4 days because of pneumonia, 104 fevers and chills, pine colored diarrhea, 78% oxygen, ecoli bladder infection, h pylori, kidney stones, vomiting even water, severe dehydration even with drinking water a lot. labs in hospital showed low cortisol, low calcium, low phos, low album, low creat, low bun, high glucose, high alt&ast, high hemoglobin, chest pain, skipped heartbeats. since that event, i lost 35 pounds in a month and a half following 4 day hospital stay, diagnosed with fibromyalgia (which is think is secondary), seeing and worsening unexplained visual disturbances such as starbursts/static/glare/halos/black dots/flashes of light/afterburn images/double vision/occasional blurriness, a benign mouth ucler that appeared cancerous on left side of mouth, stress followed by acute flu/motionsick/cold like symptoms now lasting weeks, left breast fibroadenoma, worsening anxiety/panic attacks, worsening insomnia, worsening visual and auditory dyslexia, worsening memory, new food intolerances. gosh it just goes on and on and on. the abnormal tests are as follows: reactive hypoglycemia, low fasting and non fasting salivary iga, low basal body temp, low cortisol, low progesterone and estrogence dominance, occasional low blood pressure, borderline high prolactin, mthfr mutuation, peptic/duodenum ulcers, uterine fibroids, fibroadenoma, anterior splenule, polycystic ovaries, horizontal and thick vertical nail ridges, as well as nail beading, thickened uterine lining.
so my questions are:
1)is it possible that lab results could be missing something such as cyclical cushings or other non tumor endocrine diseases and disorders?
2)why would having mostly normal but some abnormal hormone labs completely negate my extensive family history and types/characteristics roller coaster symptoms, which have strong associations with many of endocrine illnesses? arent my symptoms and family history also important?
3)isnt it possible that "my" normal and the overall normal "for society" is not the same?
4)there is something physical going on. to say it is just "all in my head" is a lazy cop out, imo. can you provide other ideas? my primary care physician is now becoming more open to suggestions and id love to have a resolution, regardless if my theories are invalid. i dont need to be correct. but i do need for my body to operate correctly.
5)ive been given a referral to an outside endocrinologist. what would you do next if you were in my situation?
thank you so much for reading all of that and putting thought into my situation.
1. Yes it is possible. The tests only test you at the moment. You have to know enough to test you when you are sick. Having had cyclical Cushing's - oddly I found the best time to test was when I felt well. The elevated cortisol reduced some symptoms (pain, acne) and increased others (no sleep, anxiety) but overall I was very sick and only a few doctors believe in the cyclical form.
2. It should be - but most doctors have not dealt with them. They don't know MEN or any of the forms. They only get five minutes, you are outside the box and they are not used to thinking anymore. It is going to take effort to find the right doctor. They are out there.
3. The labs somehow come up with those ranges - but they vary widely. I always wonder how they come up with *normal*
4. It could be literally in your head if it is a pituitary tumor - have you had imaging? Have you had a pituitary MRI?
5. I would see the endo - but many only treat diabetes and thyroid (quite badly) so be prepared for the appointment. Some doctors may resent this, some like it. Bring pictures, family history and tests - in a format that the doctor can quickly flip through it.
I have had many of the similar symptoms - not all, some different so been there done that. I had to travel to a doc to going to a good center is a great idea.
my sis had emergency surgery when they found a tumor on her left adrenal during a routine dr visit when she was trying to participate in a migraine trial. they found it because her potassium was very low. snip snip and 3 weeks later she vastly improved.
after i eat my glucose plummets and my insulin is normal, which i read can indicate an insulinoma. i think i also read those can give off too much gastric hormone and that can show up as ulcers? all i know is, my bleeding ulcers are in the same location where the pancreas and stomach touch and i have postprandial hypoglycemia. logically to me, thats suspicious considering im so symptomatic. ive also got a splenule where my spleen and pancreas connect. id really like that looked at again.
so, ive been plotting the points on the map. hopefully someone can connect the dots. getting a little tired of doing this research for them but today i am feeling pretty optimistic because i got a referral to a lady at ucla who has been treating pituitary, adrenal, thyroid, and pancreas issues for 35 years! i will get a full hour in my 1st appointment and the reviews i read said she was very friendly, compassionate, empathetic, spot on with diagnosis, and she listened and took a lot of notes. this was from reviews of cyclical cushings patients. the only negative i saw was that her appointments run long because she spends so much time with her patients. sounds great to me! =p i need a lot of time to go over everything with her. if she cant help, i did find a private dr who is supposed to be the "house of endocrinology". have to pay out of pocket for him and i dont have 450 laying around for a dr visit right now. but, i will find a way to see him last resort if need be.
had a brain mri w/o contrast & insisted neurologist check my pituitary but she didnt feel it was necessary so didnt put it on the order to have the radiologist pay attention to that area of my brain. i was having fainting episodes i thought might have been seizures, (my sister who had the adrenal tumor removed has epilepsy). the mri came back perfectly normal with no calcifications or scars. however, she still has not shown me the film. for that matter, im not sure if she even looked at the film and is just taking the radiologists word for it. she probably did, but sometimes i really wonder. i tried explaining to her why i was asking about the pituitary and her eyes just glossed over. im supposed to go back to her but i think i will skip the appoint and see if the new endo can take a second look at the mri and order new ones if necessary. ive also not yet been checked for acth levels or pth.. im really curious what those levels are. i dont have the tan/bronze pigmentation.
have u heard of anyone with these types of endo problems having visual disturbances? basically symptoms of cataracts but the eye dr saw nothing. this one is really worrying me because its progressively getting worse, its constant, and its very distracting. i havent found any relationship of the visual disturbances to endo stuff, so i was curious if youve ever heard of anything like that? im at a loss on how to research that one. i keep coming up with blanks. and the eye dr basically told me good luck. he acknowledged there was a problem but shooed me out of office with an "i dont know and i cant help you".
anyhow, thanks again. i really appreciate your reply!
Snip snip - I like that! I had snip snip snip snip - all mine are gone.
You may be able to send your MRI off the expert here - a surgeon can read your film and find more than a radiologist who is not looking. With your sad and extensive history, it is worth having someone look. If you are in the US - contact medical records and have them send you a CD of the MRI and a copy of the report. Usually that is free. Make copies on your computer and send those off to doctors or whoever - friends, family - make screen shots for your wall paper... blank CDs are usually cheap.
Re visual disturbances YES. I get them and many of us do - even with teeny tumors. In my case my optic muscles are toast. I have no depth perception either. You have to find a NEURO-optho- not any optho can do the exam. It takes a zillion docs to find the right one. I only found a good eye doc after an ER visit for asphalt in my eye... aha.
Good luck - like that helps?
It takes pretty high levels of ACTH to get a tan - over 400 or so. Usually that happens with AI. I have it with my *pseudo* nelson's syndrome - my tumor cells are pumping out ACTH like there is no tomorrow to my no adrenals - my levels without dex are around 4000!
I have not heard of the house of endocrinology - but some great docs are out of network - and some not so great.
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