Are my doctors missing something?? I know my body and something is off.

[tieranikell]

34yr old
Female

SYMPTOMS:
Chronic Fatigue
Muscle aches/tenderness
Numbness/Tingling in hands and feet
Joint stiffness
Stomach issues
Bowel issues(mostly constipation)
Vision issues(especially at night I’ve been through 3 eyeglass prescriptions in 2yrs and still can’t drive at night)
Swollen nasal passages(started April 2020)
Lung issues
Headache(usually in right temple region)
Bruise easily
Dry/Brittle hair
Overall feeling of being unwell

DIAGNOSIS:
Chronic Fatigue Syndrome
Chronic Pain
Asthma
IBS
Outdoor/Indoor Allergies(2018)(2021 Allergy Test shows I have no more allergies)
Cold Urticaria(strangely comes and goes)
Dermatographia(strangely comes and goes)
Allergic Rhinitis(2018)
Non Allergic Rhinitis(2021)
Iron Deficiency/Anemia
Endometriosis
Dry Eyes
Astigmatism
Celiac Disease???(low positive)
Gastritis
Mild Scoliosis

FAMILY HISTORY:
Breast Cancer
Diabetes
Arthritis
Heart Issues
Kidney Issues
Thyroid
Lupus(1 know family member-deceased due to illness)
Fibromyalgia(1 know family member)
Scleroderma(1 known family member-deceased due to illness)
*Tested negative for lupus and RA)

BLOOD TESTS:
*Only showing above/below normal
*TSH REFLEX TO FREE T4
2018: 1.123
2019: 1.692
2020: 2.149
2021: 4.557(Jun)
2021: 2.052(Dec)

*IRON AND TIBC:
Dec 2021: Transferrin Saturation %  12

*SEDIMENTATION RATE:
Dec 2021: 26
*I was taking ibuprofen days leading up to this test*

GLOBULIN/ALBUMIN & A/G RATIO:
2017: Albumin 3.6
          Globulin 4.1
          A/G Ratio 0.9

2018: Albumin 3.7
          Globulin 3.8
          A/G Ratio 1.0

2020: Albumin 3.6
           Globulin 4.1
           A/G Ratio 0.9

2021 Jun: Albumin 3.5
          Globulin 3.7
          A/G Ratio 0.9

2021 Dec: Albumin 3.5
                  Globulin 4.2
                  A/G Ratio 0.8
*is this normal? My doctor keeps saying my results are normal(slightly elevated) even though my Globulin is constantly high and A/G Ratio low. My doctor did follow up with a Protein Electrophoresis Test which she said was normal but final notes mentioned *A few nonspecific oligoclonal bands in gamma region*…is this normal? What does that mean? My doctor didn’t bring it up but it was in the notes of the lab who performed the tests.

I’ve also received imaging test on my brain, thyroid, and spine

BRAIN MRI:
Impressions: Single focus of FLAIR hyperintensity is seen within the mid left frontal lobe.

THYROID ULTRASOUND 2020:
Impressions: Mild thyromegaly with small benign right lower lobe nodule (probably colloid) and tiny benign left
upper lobe cyst.  No suspicious mass to warrant biopsy.

SPINE X-RAYS:
Impressions: Reversal of cervical curvature.
*Mild dextroscoliosis.
*Minimal Scoliosis

SPINE MRI: IMPRESSION:
Mild degenerative disc desiccation with bulging annulus at C3-C4 through C6-C7 level.  No focal
central disc herniation or cord compression.  Mild to moderate spondylotic compromise of left C4
thru C6 neural foramina secondary to asymmetric left posterolateral disc bulge uncovertebral
osteophytic spurs.

I just feel like it’s something my doctors are missing. I know my body and something is off. I can’t think of the last time I actually felt well. I’m young I don’t look sick and I keep myself up well so I don’t know if they really take me serious or not. If anyone has any suggestions that could help me I would greatly appreciate it!

[Jls34]

I feel for you, I had issues for at least 12 years but I am starting to think they go back to birth! The only cure is gluten free diet! I believe you could have Non Celiac Gluten Sensitivity! God Bless you!

[oculus12]

A few nonspecific oligoclonal bands in gamma region- it means your immune system is fighting against something using antibodies (also called Immunoglobulins, there are many types of them, the most common is Immunoglobulin Gamma (IgG)). It could be an infection or autoimmune disease. The "nonspecific oligoclonal" means its not a B-Cell-Lymphoma (where a monoclonal=from single tumor cell derived Immunoglobulins are produced without any reason and are usually deffective). Basically this shows the aforementioned:
                    A: 3.5
                    G: 4.2
                    A/G: 0.9
Globulines too much, albumine not enough, thus wrong ratio. Nothing ground braking though. Not enough albumine can cause swellings. Just to be sure, kidneys should be tested, to know if you are not losing albumin.

The dizziness could be because of iron defficiency.

The stiffness and pain of your back is because of the wrong neck curvature, which the muscles try to overcompensate. An orthopedic could help.

All in all I get a hunch about 2 things:
1) some autoimmune disease. Maybe some autoimmune thyreoiditis (lymphnodes in your neck region). A rheumatologist is an expert here.
2) iron, vitamin and protein defficiency. Do you eat healthy? Do you eat meat? Do you take vitamin and iron supplements?

Get well soon!

[Paxiled]

Just to say, there's no need to eat meat to get iron and vitamins, and if you combine properly you can get almost all of your protein needs.  The only thing you can't get much from plants is B12, and perhaps some methionine.  Iron is present in a host of plant foods if you know how to eat properly.  It's also impossible for us here on the internet to know a problem is from the wrong neck curvature.  

[tieranikell]

Hi, thanks everyone for your feedback!! I was checked for Lyme by my neurologist and it was negative. I’m somewhat health conscious but not totally lol. I hardly eat beef or pork and I do take vitamins. I also had a low positive celiac test(my gastroenterologist feels it’s not that though. He said the part of my stomach that would be damaged if I had celiac was normal). My nutritionist still suggested that I go gluten free which I have for the last few months. And as far as my iron my doctor suggested that I don’t take iron supplements and get iron from my food instead(obviously my diet is part of the reason my iron is low). I’ve started taking iron supplements anyways). My B12 is always in normal range according to my results. I’ve also been wondering about a possible mold illness. When the pandemic started and I was laid off I spent about 95% of my time at home(when the nose and lung inflammation started). Normally (pre pandemic) Me and my children were always away from home(only home to sleep)I had post nasal drip, but nothing severe. I’ve always had the muscle aches/tenderness(in neck and back especially) and random dizzy spells( I’ve never really felt well..even as a teen). About a month into me being laid off in the early part of C19 I got sick(no fever, cough, or loss of taste/smell though). My ears were clogged, throat felt tight, lymp nodes felt swollen, lungs felt irritated(I have asthma)nose stuffed(not with mucus…just swollen). Some days I even had weird heart palpitations..I just overall felt odd(can’t explain it). My doctor felt it was a sinus infection even though I never ran a fever and the little mucus I had was always clear). I was put on antibiotics(took for two days before it gave me a bad case of diarrhea and excruciating stomach cramps and blood/mucus in my stools(got a colonoscopy after that was normal). It took me about a month to feel a little normal  but I was left with the nasal /lung inflammation. I then remembered when I first moved into my apartment management told me that the unit below me would be empty for a long time(which I was excited about because I have two children and I knew they could play without disturbing the neighbors below). Come to find out a neighbor told me it was vacant because it had water leaking issues that a lot of garden levels have). I then decided to buy a mold kit which did show mold( by this time the complex was bought by new owners so old management was gone). The new maintenance said the unit  below had mold(I could tell it was bad by the face he made). They then moved me to a new unit. I asked my doctor if there was anyway that she could check my system for mold and she said no. If my symptoms could possibly be mold related how would I know? Is there something specific to look for? How can I get it out my system if that is the case? Sometimes I feel like I’m not taken as serious because I’m younger and don’t look how I feel. I’m a girly girl and I like to look nice…sometimes I feel my appearance  gets in the way of me getting proper treatment. I keep getting passed around to different specialist and I feel like no one is seriously looking. I keep hearing everything looks normal. It’s frustrating

[Paxiled]

Yes, there are environmental docs who can test for mold.  Not necessarily in your system but in your symptoms and by testing your home.  But the fact you were diagnosed at one time with chronic fatigue syndrome is shorthand for, you've got a lot going on but, uh, we dunno.  When you have a lot of different problems that don't necessarily go together, docs have a hard time making a diagnosis if the basic tests they know how to do come out negative.  At that point you have to see much better docs.  I would add, have you had a lot of antibiotics in your life?  Did your doc test for a sinus infection or just guess and give you an antibiotic to get you out of the office?  If you take antibiotics too often over a lifetime you can get all kinds of problems, as they are very hard on the beneficial organisms that live with us and protect us.  So in sum, yes, you can have someone check your home for mold.  Yes, there are specialists that know how to deal with it but they are not easy to find.  Knowing that's the problem is hard.  It's like the gluten thing -- most people do not, contrary to what your nutritionist probably told you, have any problem at all with gluten.  A small number have celiac, and a small number might be allergic to it, but the more common problem is a wheat allergy.  Because wheat contains gluten, it has become the culprit, but western civilization was built on wheat, for better or worse, and if gluten were such a big problem it obviously wouldn't have been built at all, right?  Right now it's a big fad to blame gluten for everything.  If you were to see a natural practitioner, the first thing they'd tell you to try is cut out dairy and wheat because modern wheat and dairy are the two biggest allergens or foods we can't digest.   The next two are soy and corn.  Then tree nuts.  Then peanuts, which are a legume, not a nut.  Each has its own symptoms.  Then there's the Lyme and the thyroid and digestive problems and bad diets and all the things that drive docs nuts because they are really hard to test for.  My advice is, go to the Mayo Clinic or Johns Hopkins if you can get there and can pay for it.  Or, try a different lifestyle, which is mostly eating a lot better.  Only organically grown foods.  Lots of veggies and some fruits.  Juicing.  You probably know the drill.  You become someone who hangs out in health food stores or goes macrobiotic.  If it works, hey, all is well.  Peace.  

[tieranikell]

Thanks for your feedback!! I’ve been on antibiotics here and there throughout my life…nothing excessive though. She diagnosed me over the phone(this is when we were shut down due to C19 and dr offices were virtual)so she only went off symptoms. I’ve been thinking it’s time for me to find a new doctor anyways(she’s really nice…I just don’t think she’s right for me. She’s also young(not sure if that matters). Someone said it’s better to see a MD vs NP(my doc is a NP…idk if it really matters). It was also suggested to me to try an Internist. Thanks again :)

[Paxiled]

NPs know virtually nothing about anything.  No offense to them, but a physician has to go through a ton to get that title.  It's fairly easy to become an NP.  And yes, it does matter if your doctor or dentist is too young and also if they are too old if they have to perform a procedure.  That's just life.  When we're young we have little experience to go on and we learn unfortunately by our mistakes.  Not good when we're seeing a doctor.  The sweet spot is when they have been doing it for awhile, better if they did it under the supervision or association with a more experienced practitioner, and not so good if they've started to only work a couple days a week and are semi-retired.  That's my experience anyway.  But the difference at a place like Mayo or Hopkins or some better universities is that they work in teams, which is even better.  Peace.

[Barb135]

I agree that you need further tests to figure out what the issue is.  I’d suspect it’s not so “rare”, just that your doctor isn’t necessarily ordering the right tests.  

Paxiled is right… TSH is a hormone produced by the pituitary gland that stimulates the thyroid to produce the actual thyroid hormones.   TSH w/Reflex is an outdated test that tells the lab to test TSH and if it’s “normal” that’s all they need to do, but if it’s abnormal (either high or low), then they should go ahead and test T4.  The problem is that we don’t just want T4, we want FREE T4 “and” FREE T3…   It’s not known yet what T1 and T2 do in the body or how important they are.  

Your iron level is WAY too low, even though it’s within the “normal” ranges and an iron panel is not complete without Ferritin.  

I agree that your issue could range anywhere from Lyme Disease to an autoimmune.

[tieranikell]

Hi, thanks everyone for your feedback!! I was checked for Lyme by my neurologist and it was negative. I’m somewhat health conscious but not totally lol. I hardly eat beef or pork and I do take vitamins. I also had a low positive celiac test(my gastroenterologist feels it’s not that though. He said the part of my stomach that would be damaged if I had celiac was normal). My nutritionist still suggested that I go gluten free which I have for the last few months. And as far as my iron my doctor suggested that I don’t take iron supplements and get iron from my food instead(obviously my diet is part of the reason my iron is low). I’ve started taking iron supplements anyways). My B12 is always in normal range according to my results. I’ve also been wondering about a possible mold illness. When the pandemic started and I was laid off I spent about 95% of my time at home(when the nose and lung inflammation started). Normally (pre pandemic) Me and my children were always away from home(only home to sleep)I had post nasal drip, but nothing severe. I’ve always had the muscle aches/tenderness(in neck and back especially) and random dizzy spells( I’ve never really felt well..even as a teen). About a month into me being laid off in the early part of C19 I got sick(no fever, cough, or loss of taste/smell though). My ears were clogged, throat felt tight, lymp nodes felt swollen, lungs felt irritated(I have asthma)nose stuffed(not with mucus…just swollen). Some days I even had weird heart palpitations..I just overall felt odd(can’t explain it). My doctor felt it was a sinus infection even though I never ran a fever and the little mucus I had was always clear). I was put on antibiotics(took for two days before it gave me a bad case of diarrhea and excruciating stomach cramps and blood/mucus in my stools(got a colonoscopy after that was normal). It took me about a month to feel a little normal  but I was left with the nasal /lung inflammation. I then remembered when I first moved into my apartment management told me that the unit below me would be empty for a long time(which I was excited about because I have two children and I knew they could play without disturbing the neighbors below). Come to find out a neighbor told me it was vacant because it had water leaking issues that a lot of garden levels have). I then decided to buy a mold kit which did show mold( by this time the complex was bought by new owners so old management was gone). The new maintenance said the unit  below had mold(I could tell it was bad by the face he made). They then moved me to a new unit. I asked my doctor if there was anyway that she could check my system for mold and she said no. If my symptoms could possibly be mold related how would I know? Is there something specific to look for? How can I get it out my system if that is the case? Sometimes I feel like I’m not taken as serious because I’m younger and don’t look how I feel. I’m a girly girl and I like to look nice…sometimes I feel my appearance  gets in the way of me getting proper treatment. I keep getting passed around to different specialist and I feel like no one is seriously looking. I keep hearing everything looks normal. It’s frustrating

[Barb135]

Were there any other tests done for thyroid function… such as the actual thyroid hormones (Free T4 and Free T3), antibody tests, etc?  If so, what were those results?  Also, when posting lab results, please post reference ranges, since ranges vary from lab to lab.  

Your list of family history lists “thyroid” - what thyroid disease is present?

What other tests were done with the iron saturation?  Was there an actual iron test?  If so, what was it, with reference range?   Just because some parameters might be in the lab’s “normal” range, that doesn’t mean they are normal for you.  

[tieranikell]

My doctor has only done TSH Reflex To Free T4. And the normal ranges are 0.350-5.500. I also have a lot of weird random swelling in my throat it also feels like my lymph nodes in throat are always randomly swelling. And my sister had to have her thyroid removed.

IRON AND TIBC
*Transferrin Saturation%: 12
Standard Range: 15-60

*Iron: 39
Standard Range: 26-162

*TIBC: 337
Standard Range: 269-535

*Transferrin: 241
Standard Range: 195-387

GLOBULIN/ALBUMIN & A/G RATIO
Standard Range:
Albumin: 3.4-4.8
Globulin: 2.3-3.5
A/G Ratio: 1.0-2.0

2017: A: 3.6
          G: 4.1
          A/G: 0.9

2018: A: 3.7
           G: 3.8
           A/G: 1.0

2020:  A:  3.6
            G: 4.1
            A/G: 0.9

Jun 2021:  A: 3.5
                   G: 3.7
                   A/G: 0.9

Dec 2021:  A: 3.5
                    G: 4.2
                    A/G: 0.9


Also do you know what the labs were referring to when it said I have a few oligoclonal bands in gamma region? My doctor didn’t mention it but it’s in my notes. She did state that she feels like something is going on with me just don’t know what yet. Maybe the wrong tests are being ordered for me…idk I’m just ready for some type of explanation. I also forgot to mention that I have weird dizzy episodes. I can go a year or two without having them..then boom I’m spinning and seeing weird color spots. Both ankles also swelled up for no reason in May after I moved(ER nurse said it was lymphedema and left it at that. When I was finally able to se my doctor the swelling was gone so she couldn’t say). And last year my right fingertips were swollen for a few weeks kind of lighter looking and my doctor was puzzled…she couldn’t explain that either lol. She said maybe you have some rare autoimmune thing going on that I can’t figure out lol. Maybe I need a new doctor lol
        

[Paxiled]

Yes, you definitely should go somewhere with a team approach, as you are manifesting so many different problems, such as Mayo Clinic or Johns Hopkins.  One doc probably won't cut it.  But there are some possibilities.  Barb above was getting at the fact the docs don't usually do really good thyroid tests.  Tsh is actually a test of the relationship of the thyroid with the adrenal gland, which is important but the better test is free T3 and T4.  Your answer suggests you might have gotten such a test and also hints you might not have, so there's that.  Some holistic nutritionists go even further and test T1 and T2.  But it could be so many things, such as a hidden virus, hidden infection (lyme is one of those, systemic yeast infections (when they get inside the body and into the organs), exposure to toxic chemicals such as a sick building or hidden mold or polluted water pipes.  There's a lot that can cause such a systemic problem, so I'd suggest if you're able to travel and can pay for it one way or the other to look into a place that has the best and most thorough docs.  

[tieranikell]

I also would like to add that I also have a lot of tenderness in my neck, upper(trapezius and upper back is always tight and knotted), and lower back and top of butt is VERY sensitive. Also my pelvic bone hurts often(specifically the right side). It gets to the point where it hurts to walk and I can’t sit/stand/lay for too long. I’ve been to physical therapy and alternative pain therapy with only temporary relief(it temporarily helps with stiffness but soreness/tenderness never goes away).