Discussions By Condition: I cannot get a diagnosis.

Many Symptoms, many tests :( no diagnosis

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: amlich
  • May 27, 2011
  • 07:23 AM

I am 23. I have been pretty sick for about 4yrs, but in the lasts year and half very sick. 2 months ago I was admitted into the hospital with fatigue, diarrhea, vomiting, nausea, low blood pressure, heart palpitations, and body ache. I was extremely sick. While I was in the hospital they found a 7mm adrenal nodule, and told me to get further testing. They sent me home after 2 days with a diagnosis of the Flu. So I have been getting tests ever since, finally my endo is testing for Adrenal Insufficiency. So here are my symptoms and most recent test results.

Symptoms (daily, weekly, monthly)
extreme fatigue
weak bones and muscles
chronic diarrhea
weight loss and inability to gain weight (used to weigh 128 now 105 or less)
low appetite
low libido
dizziness when standing
low blood pressure 90/50-108/60 on avg
occasional heart palpitations
insomnia
extreme mood swings
anxiety
extreme irritability
recurring yeast infections every months
frequent UTIs
very painful menstrual cramps
heavy menstrual bleeding
acne one chest, back
very thin nails
itchy dry skin and scalp
red splotchy hands and dark feet
occasional chest pains

Test Results (So far doctor says everything is normal)
Random Cortisol (11:17am) 6.2 ug/dl
ACTH, plasma 14pg/ml
Sodium 140mmol/l
Potassium 4.1mmol/l
DHEA Sulfate 120 ug/dl
TSH w/reflex to Free t4 tsh 1.02mu/l
Testosterone Total 19ng/dl

So do those numbers look normal to you? I have been mis-diagnosed so many times in the past, so I always want second opinions. I demanded an ATCH stim test, which I did yesterday and should receive results next week. I am worried though because my stress has been very high lately from all the pain i've been in. Doctor says if test comes back negative we can completely rule out adrenal insufficiency. If negative any suggestions on what route to take next? I am so desperate to feel better! I can hardly function http://www.healthboards.com/ubb/frown.gif

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  • Your link wasnt working...Im glad he's going to fully rule out adrenal issues esp with your dark feet.... If they find nothing there.. insist on getting your own copies of your test results. Ive found that many doctors ignore out of range results if they are things they dont know much about and any abnormalities can give you big clues on helping you find out what's wrong. (doctors usually only know about common stuff!!). All your various symptoms and your low BP point to that you are likely to have chronic fatigue immunity dysfunction syndrome (CFIDS) also known as CFS or ME. 86% of people with this according to studies, have low BP with it so your symptom list there is fairly typical for it http://wwcoco.com/cfids/bernesx.html The diarrhea in CFS is often caused by entroviruses, food issues or by irritable bowel syndrome (50-90% of ME/CFS have this). Try to work out any food issues you have and treat for IBS. dizziness when standing Most people who have ME/CFS have also have coexisting POTS which is a kind of dysautonomia and issue with the autonomic nervous system in which one has regulation issues with eg the heart (it causes bouts of tachycardia as ones body cant adjust easily to postural changes).The ME/CFS association has said from studies up to 90-95% of those with this disorder have POTS too).With POTS.. it is harder to stand due to the dizziness which that brings in then to walk (cause blood isnt going up to the brain well). POTS patients struggle to stand in queues.. Treating the POTS can help. http://www.dinet.org/I suggest to be tested for POTS eg tilt table testing (POTS is just starting to be more recognised. Your low BP will also cause issues when standing. It is quite normal for POTS patients to have coexisting BP issues. POTS can cause anxiety attacks, nausea and chest pains and will add to the fatigue and symptoms of ME/CFS... You havent said it in your list but I think you probably also would be getting mind fog at times too and possibly memory issues (cause both POTS and ME/CFS causes that). very painful menstrual crampsheavy menstrual bleeding Endometriosis is more common in ME/CFS people. ... How are your cycles?? regular and normal or not?? are they very long cycles or infrequent?
    taniaaust1 2267 Replies Flag this Response
  • Hi, I have a diagnosis of UCTD Undifferentiated Connective Tissue Disease. Many of your symptoms seem like they could be on the line of auto-immune conditions. Please check out www.whoneedsdoctors.orgThere is a lot of information on symptoms vs just the diseases they even show you how to figure out if you do or do not have these symptoms. I would thoroughly check and see if you have any of the conditions described here and then you may be able to narrow down the diagnosis.
    Jalee85 1 Replies Flag this Response
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