please look at lab work/symptoms and help

[dana_8142]

I am a 29 year old female, mother of one (three year old) I don't smoke, don't drink, don't do drugs.  Overall I am fairly healthy.  But I feel unhealthy all the time, please help.

Here's the facts:
Positive Tilt Table Test
Potassium = low 3.3 - doc. recommended suppliments
SGPT (ALT) = low 8
Esinophil% = high 3
hematocrit = 36
MCHC = low 33.8
Vitamin D = low - levels not, but enough that my doc recommended suppliments
Everything else appears normal, I even had: thyroid tests - TSH, T4, T3; ANA Titer; Cortisol (AM); ESR (Sed rate); B-12 level check; Protien; Albumin; A/G Ratio; Globulin; and CBC work-up

Here's the symptoms:
fatugue
numbness hands and feet (possible carpal tunnel)
restless leg syndrome
shortness of breath with little physical assertion
weak hand grip
cognitive fog
memory loss (short and long term)
weakness
hoarseness (voice changes, hard to explain)
slightly enlarged tongue
thinning hair
skin changes (no wrinkles but I am aging very quickly)
Skin tags
loss of elasticity in skin
headaches
mood swings
climbing steps or sitting for a period of time can bring symptoms about
joint pain (knees, elbows, hands - i have even had fluid removed from my knee that appeared "clean")
occasional chest and rib pain
pale
dark circles under eyes
Non-restorative sleep

What could be wrong with me? I have found a few possibilities but I don't know what tests I need, or if I'm even on the right track.  
Possibilities:  Amyloidosis
                    Leukemia
                    Renal Insufficiensy
                    Parathyroid disease
                    Villous Aedenoma
                    Renal Tubular Acidosis
                    Fanconi Syndrome
                    Cystinosis
                    Sarcoidosis
                    Myelofibrosis
                    Multiple Myeloma
                    Gout
                    Hashimoto's Disease (and other thyroid disorders)
                    Aldosteronism
                    Cushing's Syndrome
                    Adrenal Tumors
                    Hepatic Dysfunction

My doc. just wants to treat my lab work with suppliments, rather than finding a cause for these abnormalities, what should I do?  I feel like I am being robbed of my life, my quality of life *****, I can't do anyhting I am always sick.  Where do I turn?

Any help would be greatly appreciated - PS last year an MRI of my brain revealed chiari malformation with syrinx - however, 2 specialists and a neurologist deemed it asymptomatic. - no other signs of brain disorders (MS, etc.)

[Candace5440]

I know it has been a few months since you have posted but i stumbled across your post because I am actually being tested for lukeimia because of some routine blood work being done because of some re occuring symtoms of my chiari malformation. I will tell you that I have all of the symptoms that you have mentioned and they are all known to go along with chiari malformation. It is best to see a chiari specialist if you have been diagonse with chiari trust me I had decompression surgery 4 yrs ago with a surgeon who was not a specialist and have been having a battle ever since. Check into the list of symptoms on www.chiarione.org.

[dana_8142]

Thank you all so much.  I know my symptoms don't seem too severe compared to what many of you are going through.  But I went from graduating college on a track and field scholarship to not being able to climb a flight of stairs in three years time.  It just seems so strange to me that my lab work isn't more out of wack, that's why i am here trying to get advice on what tests I should ask for, and what doctors to see.

P.S. My uncle was recently diagnosed with chronic leukemia, he had many of the same symptoms as me - he is the one that recommended I search in this direction.  But I agree with you, I don't think it is leukemia, but it could be something with similar symptoms - actually, he mentioned that I should have my parathyroid checked too.  So I have been to the thyroid forum looking for help as well.

Thanks for responding.

[suzzie61]

Hi:  I agree with all the other posts to your situation.  It could be so many things, but it also sounds like your nerves are getting the best of you.  It is amazing at what nerves can cause to your physical well being.
I am on the boards because I have Leukemia, and I try to help out anyone new to dealing with it. I have lots of other health problems too.
You need a doctor that can start testing different things related to your symptoms.  I see a kidney specialist because my numbers were out of wack, and it turned out I was dehydrated.  I started to drink fluids, mostly plain water.  My numbers have been back to normal, but he did find that I have Parathyroid Disease.  That was found due to him seeing I had a low phosphorus and a high calcium.  Lack of Vitamin D
Thats why I say they need to check numerous things so they can start checking off the things that you do not have.  Try to relax, and think Positive before you jump into anything else.

[dana_8142]

Thank you both so much for your input, i feel so lost.  When I was diagnosed with chiari malformation i was actually relieved, i thought that they had final found the reason for all of my symptoms.  Then I went to 2 different specialsts who both said, sorry but your chiari is asymptomatic.  So i'm back to square one, my sister has kidney problems, so it is possible that there as an adrenal or renal issue, but I can't get my doc to run many tests, she always says the same thing, i doubt your insurance will pay for it!  

But i keep trying anyway.  I'll keep you both posted!

Thanks again

[Jules77733]

Oops...sorry...I didn't see the thyroid tests you had done, sorry.

In that case...I'd definitely look at the adrenals and if nothing turns up after this and autoimmune testing (Rheumatologist), you might want to visit a Hematologist to look more closely at your blood for abnormalities or blood diseases. At some point, you may want to have a full body CT scan done if doctors still have no idea.

Just don't give up, and don't let your doctor(s) continually "treat" you with medication or supplements. I've been on that road for the past year and it's only complicating things further--for example, my liver enzymes are elevated and they aren't sure if this is from my "disease" or from the medication I've been on. There's a diagnosis waiting for you, it's just going to take some time to reach it.

[Jules77733]

I'd look into thyroid and adrenal problems. A lot of your symptoms sound hormonal in nature, so visiting a Rheumatologist or an Endocrinologist after having your GP run some basic hormone panels (test cortisol, pituitary hormones like ACTH, TSH, free T4, total T4, etc.) sounds like the best route to take at this point.

I hope you feel better soon!

[syralia]

Hi there,

I know from experience that it can be very frustrating to be in a diagnosis limbo and though treating your symptoms might make you feel better you want to know what is causing them so that you can go for the root of the problem.

My suggestions would be to see a Rheumatologist to rule out any Auto-Immune issues such as Lupus and Rheumatoid Arthritis and to an Endocrinologist to rule out possible adrenal issues.

Sometimes to find the answer, especially when the disease is one that is so complicated, we have to test for alot of different conditions, crossing off the ones that are negative from the list until we are left with an answer and the best person to see is a Specialist in these feilds since they have the proper training to read the results and put them together with vague test results.  (I say vague because most Primary Care Dr's will not be able to add it all up and would rather treat the symptoms)

I hope that you get some of the answers you need soon, in the meantime I would suggest scheduling some serious "me time"... do something for yourself, something relaxing that can help you relax and unwind for a bit.  I know it sounds impossible, but if you treat yourself to a little pampering it can help you deal with everything a little better and besides, after all you have been through, you deserve a treat!