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  • Normal labs but very sick!

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    Old 05-26-2018, 01:21 PM   #1
    txpony
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    Normal labs but very sick!

    Autoimmune? Thyroid? Parathyroid? Cancer? Pre-Diabetes? My main questions are at the bottom.


    History:

    32 y/o white female. 5'8" 128lbs, very active lifestyle. Self employed and recently divorced so yes, I have had a lot of stress.

    Growing up, I had many episodes of strep throat then had tonsils removed at age 16. I've also had frequent UTI's my whole life and was diagnosed with IC but surprisingly, those episodes have become much more infrequent.

    4 years ago and after several gall bladder attacks, I went to the ER and they removed it. I've had several "gall bladder attacks" since then but they weren't quite as painful and were over quickly.

    Senior year, I had severe pain and stiffness in my hands. I couldn't even pick up a gallon of milk Dr. gave a steroid shot and it went away. I've had a few minor episodes with this off and on over the years.

    My other long standing complaint would be SI pain. It started 11 years ago when I got pregnant with my one and only child. I also ride horses for a living so that could be the cause I suppose.
    -----------------------------------------------------------

    Over the last 2.5 years my symptoms have gotten worse. My hair has been thinning badly, my skin has gone crazy with dryness and ingrown hairs, sores that take forever to heal. Bumps started showing up on the sides of my fingers. I thought they were warts and tried everything to remove them. They fluctuate in size but started getting more and more. Then they started to show up on the palmar surface of my fingers in clusters near the joint creases. Slightly larger red ones started to show up in my finger tips that were painful.

    Since December 2017, my symptoms have exploded. If I had to only pick one horse to bet on, it would be Mixed Connective Tissue Disorder because I have so many symptoms of multiple autoimmune diseases. Thankfully, I've been taking pictures and notes to show my doctors because my blood work is within "normal ranges" for everything except my low positive ANA (1:160 speckled and homogenous) so they aren't in any big hurry to figure out what is wrong with me. They are baffled by my symptoms and definitely suspect something autoimmune and are still running tests.

    However, I can't afford to be like this. I'm self employed! I need to figure this out and FAST.

    -My fatigue has gotten so bad that even my full dose of 40mg of Adderall taken all at once with 3 cups of coffee didn't even touch it.. I should've been bouncing off the walls! I feel soo tired but can't sleep more than 5-6 hours.

    -The brain fog is getting sooo bad. I forget what I'm saying in the middle of a sentence, almost brushed my teeth with diaper rash cream ect..

    -I'm always freezing cold. I've noticed my body temp has been hovering around 97 -97.6.

    - My muscles ache, wasting away, getting weaker, muscle twitching is getting worse.

    - Burning/tingling/numbness radiates distally when pressure is applied to thin skin areas like the top of my foot/hand, inner elbow, and armpit.

    - More bumps popping up all over my body.
    - I get dizzy every time I stand up. Blood pressure and heart rate are all over the place without doing anything but sitting here.
    - Heart burn is getting worse and my chest has been feeling a bit heavy...

    -Last weekend I had a really bizarre and intense pain like my pelvis was in a vice squeezing my hips together. It lasted about 4 hours and dissipated.. it hasn't happened again yet.

    -I scratched a bug bite on the medial side of my bicep very lightly and it turned into a large 1.5" hicky looking red/purple petechial bruise.


    Soo with that said, here are my lab results so far: High side of normal is bold. Low side of normal is underlined.

    Hormones:

    TSH - 1.06 (.40-4.50)
    T3- 98 (76-181)
    FT4- 1.4 (.8-1.8)

    Vit D - 32 (30-100 Normal, 20-29 Insufficiency, <20 deficient)
    Would you consider this low side of normal? I basically live outside, in Texas and eat/drink food fortified with it too.

    CBC/Metabolic:

    RBC- 5.10 (3.8-5.10)
    WBC- 7.3 (4-11)
    Hemoglobin- 14.9 (11.5-15.5)
    Hematocrit- 42.7 (34-45)
    MCV- 82.7 (80-100)
    MCH-28 (27-34)
    MCHC-35.3 (32-35.5)
    RDW- 11.4 (11-15)


    Glucose - 86 (70-99)
    Sodium - 142 (133-146)
    Potassium - 3.8 (3.5-5.4)
    Chloride- 105 (95-107)
    Carbon Dioxide- 29 (19-31) This went up 2 points after I QUIT smoking?
    Calcium- 9.9 (8.5-10.5) Went up .3 in 3 months.
    Protein-7.3 (6.1-8.3)
    Albumin-5.0 (3.5-5.2)
    Calc Globulin- 2.1 (1.9-3.7)

    (other values were in the middle)
    Immunology:

    ESR - 2 (0-20)
    CCP - <16 (<20)
    CRP - .4 (<8.0)
    RF - <10 (<14)
    ACE - 40 (9-67)

    Chromatin, SS A/B, Jo-1, Centromere B, Scl-70, Sm/RNP = Negative.
    Still waiting on results for Complement C3/C4/CH50, Histone, 14.3.3 Protein.

    X-rays of the hands show very mild arthritis and my SI/lumbar x-ray showed pretty significant arthritis in my right SI joint (the one that always hurts more).
    No other imaging done yet.

    ----------------------------------------------
    All my symptoms scream autoimmune. However, no family history really. I had an uncle with RA and a niece with Psoriasis. All my AI labs except for the ANA are normal.

    My family does have a strong history of type 2 diabetes (Paternal grandma, my dad, and his 5 brothers/sisters all had it by the time they were 45. Some were skinny and some were slightly overweight). Paternal Grandpa died of a heart attack. My dad had a quadruple bypass almost 4 years ago. He's also had stage 2 Melanoma.

    My maternal Grandma passed away 3 years ago from breast cancer. My mom and grandma both had hysterectomies in their late 30's because of large uterine fibroids. My mom has also had a few small benign tumors removed from both her feet. Some calcified, others were not.

    With all that being said, I feel like maybe there is still hope that it's something else non-autoimmune and have been researching non-stop.

    QUESTIONS:

    Elevated RBC, slightly elevated and trending up Calcium, and dropping vit D, could this be parathyroid related? They haven't checked my PTH level yet. Should I even bother asking?

    They haven't tested other fat soluble vitamin levels but there could be a malabsorption issue after my gallbladder was removed right? I have been supplementing with vitamin D for the last week, and my symptoms haven't really improved. What's the average time it takes to see any improvement after you start supplementing? I've also been doing weekly b12 injections since March, and have been trying to drink a lot more water and haven't seen really any improvement (physically or in my labs from January to now).

    I was thinking that maybe it was adderall aggravated. I took only 20mg today, no caffeine, and muscle twitching happened in my left upper lip and right arm near my shoulder... both places I've never had muscle twitching before!!! The joint pain also started long before I was ever prescribed adderall.

    The other reason I think it could possibly be endocrine related is blue/black/greenish watery nipple discharge. Dr didn't seem concerned since it was bilateral and only when pressure is applied to the breast. She did check my prolactin level and it was normal.


    Any ideas or advice???? sorry for the super long post. I'm desperate!

     
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    Old 05-26-2018, 06:33 PM   #2
    ladybud
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    Re: Normal labs but very sick!

    In terms of your symptoms, autoimmune disease is first on the list. Missing from your labs are 2 anti thyroid antibodies, anti TG and anti TPO. These, if either is elevated, would be suggestive of Hashimoto thyroiditis, which can cause fatigue, + ANA, and joint pains. You should also have an HLA B27, since SI joint pain is predominant in ankylosing spondylitis. The C3 and C4 will help with checking out lupus. 40% of people with RA will have negative RF, so that’s still a possibility. ANA of 1:160 is considered clinically significant, so don’t let anyone just blow that off. Consider getting a ferritin level done on serum since rbc are upper level. It reflects stored iron and excess can cause arthritis and diabetes and other endocrine problems (hemochromatosis). Sometimes autoimmune disease shows symptoms long before lab evidence, but you clearly have symptoms a 32 yo should not have and tests need to be repeated at yearly intervals at least to detect changes. I would for sure see a rheumatologist if you have not, and keep searching. The bumps you describe could be nodules associated with autoimmune disease or arthritis so be sure to point them out to the Dr. let us know what you find out and good luck with getting answers and help.

    Last edited by Administrator; 05-26-2018 at 07:48 PM.

     
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    Old 05-26-2018, 09:55 PM   #3
    txpony
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    Re: Normal labs but very sick!

    Thank You! That was extremely helpful! I had my first Rheumatologist appt Wed and scheduled for another in 3 weeks. The rest of my labs should be available via patient portal hopefully next week.

    I知 a bit concerned about my heart rate lately. Resting heart rate has been between 80-110. Ive done nothing but sit on my butt all week because of the extreme fatigue. Should I bring that up to the Rheumatologist or make another appt with my pcp?

    While I do want to be diligent and advocate for my own health, I知 a little worried about being too pushy and them shutting me down and delaying a diagnosis.

     
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    Old 05-27-2018, 06:09 AM   #4
    ladybud
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    Re: Normal labs but very sick!

    Quote:
    Originally Posted by txpony View Post
    Thank You! That was extremely helpful! I had my first Rheumatologist appt Wed and scheduled for another in 3 weeks. The rest of my labs should be available via patient portal hopefully next week.

    I知 a bit concerned about my heart rate lately. Resting heart rate has been between 80-110. Ive done nothing but sit on my butt all week because of the extreme fatigue. Should I bring that up to the Rheumatologist or make another appt with my pcp?

    While I do want to be diligent and advocate for my own health, I知 a little worried about being too pushy and them shutting me down and delaying a diagnosis.
    I would tell both Drs about your heart rate. Fast rates are common in lupus and other autoimmune disease, especially if fever or significant inflammation is present. It痴 a symptom worth mentioning, and can be treated with medication if it痴 bothersome to you.

     
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