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What Does My Lab Test Report Indicate?
Question: So, a little bit of a back story to all of this, and I apologize for it being so incredibly scattered, I don't even really know how or where to start. I'm 26 years old, adopted at birth from Romania with no family medical history known. I've been sick for about six years now, with it taking a VERY long time to get to the diagnosis's I have now. I've been struggling with Gastroparesis for several years now, and have a PICC Line in order to administer daily IV meds (Reglan-10mg, Zofran-8mg, Benadryl-50mg, Protonix-40mg, and 2 liters of Hydration). On top of the Gastroparesis, I have a complex medical history, including SVT, POTS, PE (the first 9/2016, then placed on Xarelto-20mg, then the second 12/2016-while on the Xarelto, but the choice was made to continue with the Xarelto rather than switching for now), Lyme disease (which has been addressed with multiple different antibiotics, but never fully treated and ruled out), several years ago I had elevated EBV results, that unfortunately I did not know about until just a few days ago, and now, my latest issue is (what we-my hematologist and I-are working towards diagnosing) Iron Deficiency Anemia. There has been recent discussion between myself and my GP about MCAS because of my multiple deathly allergies, that require Epi intervention, and have four times required intubation. My labs are very odd, and complex. I've had a continuously elevated (not necessarily always alarmingly elevated, but never really in the "normal range") WBC, ESR, Platelet and CRP. All while having a lower Hemoglobin, Hematocrit, MCV, MCH, MCHC. I just started seeing the new Hematologist, who I truly believe is wonderful, and I fully trust his judgment, me reaching out is just my own side work. My levels are as follows (as of February 10, 2017): Ferritin Serum-5
Iron Saturation-5
Iron Serum-16
Vitamin D-25 Hydroxy-13.5
Vitamin B6-1.3
CRP-12.1
Hemoglobin-8.5
Hematocrit-27.6
MCV-77
MCH-23.8
MCHC-30.8
Platelet-575
WBC-16.9
RBC-3.57
Potassium-3.1
Haptoglobin-224
Those are the ones that are not within the normal reference range. Let me follow this up by saying, I just had two full (and then one half dose, due to a sudden bad reaction that actually resulted in the infusion center calling 911 and sending me to the ER with my HR in the 140's. I was placed on fluids, given Benadryl, Hydrocortisone, which ultimately stabilized me, and put me back into "my normal" resting rate of 110-120-which is a symptom of the POTS, then discharged) IV Venofer (about a year ago I had, what I thought was bad at the time and boy was I in for a shock coming to this point, a ferritin of 13, and had IV Ferahem, and I had a terrible reaction to it, so Venofer was the best-and really only option) infusions in the last nine days. My Hemoglobin has been fluctuating between the low 8's, even dropping to 7.7 at one point, to the mid 9's. My potassium on February 7, 2017 was 4.1 (after receiving Hydration with Potassium on February 3, 2017), and my Hemoglobin was 9.5 (keep in mind when that 9.5 was resulted I had already had the first two IV Venofer doses) It's very clear, and my hematologist is the one who brought this into light, that I'm having serious malabsorption issues, likely as a result of my Gastroparesis rapidly declining (I by chance have a long awaited appointment with a very well known GI and Motility specialist on February 14, 2017, who I am hoping will also be able to start guiding me in the right direction and shed some light onto this situation). Amidst all of this, I am utterly EXHAUSTED, weak, having terrible head (VERY different than your typical migraine) and body aches, nauseas, and I get what we've been calling these "crashes" where I very suddenly get overwhelmed by my headache, weakness, and dizziness. It's sometimes accommodated by my HR elevating and being very tachy (more than my usual). I've been tested for Diabetes, which thankfully has never come with a diagnosis following. The Gastroparesis we think, is caused potentially by the Lyme (I'm very well aware of how much Lyme disease is a controversial issue all over the world, especially here in California). Okay, so with this massive amount of information comes my rough questions: what's causing the fluctuating (and continuously low despite two and a half doses of Venofer) hemoglobin? continuous elevated WBC, ESR, CRP? is MCAS something that could cause all of this? because of that elevated EBV I had several years ago, could there be more underlying autoimmune that I am unaware of? I'm sure I have other questions that I can't think of because it's 05:41 here and I've been up all night trying to figure out my next options (as well as sorting through pages and pages of labs). I apologize for everything being so incredibly scattered, there's just so much history and information and it can be difficult figuring out where to start. Lastly, I currently have the following specialists on board (including a wonderful Primary Care Doctor who has followed me for about a decade):
Hematologist
Neurologist
GI
Neurogastrointerologist (spelling?)
The ones I know I need to add that I've seen in the past but it's been a little while are:
Cardiologist
Immunologist
Allergist
Infectious Disease
Rheumatologist
Thank you in advance!
Iron Saturation-5
Iron Serum-16
Vitamin D-25 Hydroxy-13.5
Vitamin B6-1.3
CRP-12.1
Hemoglobin-8.5
Hematocrit-27.6
MCV-77
MCH-23.8
MCHC-30.8
Platelet-575
WBC-16.9
RBC-3.57
Potassium-3.1
Haptoglobin-224
Those are the ones that are not within the normal reference range. Let me follow this up by saying, I just had two full (and then one half dose, due to a sudden bad reaction that actually resulted in the infusion center calling 911 and sending me to the ER with my HR in the 140's. I was placed on fluids, given Benadryl, Hydrocortisone, which ultimately stabilized me, and put me back into "my normal" resting rate of 110-120-which is a symptom of the POTS, then discharged) IV Venofer (about a year ago I had, what I thought was bad at the time and boy was I in for a shock coming to this point, a ferritin of 13, and had IV Ferahem, and I had a terrible reaction to it, so Venofer was the best-and really only option) infusions in the last nine days. My Hemoglobin has been fluctuating between the low 8's, even dropping to 7.7 at one point, to the mid 9's. My potassium on February 7, 2017 was 4.1 (after receiving Hydration with Potassium on February 3, 2017), and my Hemoglobin was 9.5 (keep in mind when that 9.5 was resulted I had already had the first two IV Venofer doses) It's very clear, and my hematologist is the one who brought this into light, that I'm having serious malabsorption issues, likely as a result of my Gastroparesis rapidly declining (I by chance have a long awaited appointment with a very well known GI and Motility specialist on February 14, 2017, who I am hoping will also be able to start guiding me in the right direction and shed some light onto this situation). Amidst all of this, I am utterly EXHAUSTED, weak, having terrible head (VERY different than your typical migraine) and body aches, nauseas, and I get what we've been calling these "crashes" where I very suddenly get overwhelmed by my headache, weakness, and dizziness. It's sometimes accommodated by my HR elevating and being very tachy (more than my usual). I've been tested for Diabetes, which thankfully has never come with a diagnosis following. The Gastroparesis we think, is caused potentially by the Lyme (I'm very well aware of how much Lyme disease is a controversial issue all over the world, especially here in California). Okay, so with this massive amount of information comes my rough questions: what's causing the fluctuating (and continuously low despite two and a half doses of Venofer) hemoglobin? continuous elevated WBC, ESR, CRP? is MCAS something that could cause all of this? because of that elevated EBV I had several years ago, could there be more underlying autoimmune that I am unaware of? I'm sure I have other questions that I can't think of because it's 05:41 here and I've been up all night trying to figure out my next options (as well as sorting through pages and pages of labs). I apologize for everything being so incredibly scattered, there's just so much history and information and it can be difficult figuring out where to start. Lastly, I currently have the following specialists on board (including a wonderful Primary Care Doctor who has followed me for about a decade):
Hematologist
Neurologist
GI
Neurogastrointerologist (spelling?)
The ones I know I need to add that I've seen in the past but it's been a little while are:
Cardiologist
Immunologist
Allergist
Infectious Disease
Rheumatologist
Thank you in advance!
Brief Answer:
Complex issue, genetic issue needs to be looked into.
Detailed Answer:
Hello Mia,
I am sorry to learn about your harrowing experience over the years.
I much appreciate your lengthy description, the more information you give, better the picture will be.
I read through your query carefully and I have tried my best to piece everything together so as to see if it fits in any of the syndromes, either of infective etiology or autoimmune etiology.
Yes, you do have autoimmune disorder, which is very severe, and you do have persistent anemia, with low iron saturation and and serum iron levels (I can not be sure about this because you have not mentioned the units), despite IV iron infusion.
Considering the fact that you do have autoimmune disorder, which is a genetic abnormality that affects certain protein molecules, it is not irrational to consider a genetic basis for your low hemoglobin levels and transferrin saturation and low serum iron levels. Malabsorption should not affect the iron saturation and iron binding capacity when the iron is given intravenously.
From your description, infections like lyme disease do not seem very plausible.
You need further evaluation, your transferrin levels need to be checked and bone marrow cytology needs to be done to check what is going inside the bone marrow.
I would suggest you to get a geneticist involved so that things start falling into place.
I hope this answers the most significant part of your query.
I will answer any of your specific queries if you have them.
Best regards
Complex issue, genetic issue needs to be looked into.
Detailed Answer:
Hello Mia,
I am sorry to learn about your harrowing experience over the years.
I much appreciate your lengthy description, the more information you give, better the picture will be.
I read through your query carefully and I have tried my best to piece everything together so as to see if it fits in any of the syndromes, either of infective etiology or autoimmune etiology.
Yes, you do have autoimmune disorder, which is very severe, and you do have persistent anemia, with low iron saturation and and serum iron levels (I can not be sure about this because you have not mentioned the units), despite IV iron infusion.
Considering the fact that you do have autoimmune disorder, which is a genetic abnormality that affects certain protein molecules, it is not irrational to consider a genetic basis for your low hemoglobin levels and transferrin saturation and low serum iron levels. Malabsorption should not affect the iron saturation and iron binding capacity when the iron is given intravenously.
From your description, infections like lyme disease do not seem very plausible.
You need further evaluation, your transferrin levels need to be checked and bone marrow cytology needs to be done to check what is going inside the bone marrow.
I would suggest you to get a geneticist involved so that things start falling into place.
I hope this answers the most significant part of your query.
I will answer any of your specific queries if you have them.
Best regards
Above answer was peer-reviewed by :
Dr. Yogesh D
Thank you for your reply, I appreciate it greatly!
I was reviewing my labs that have been ordered, and as far as the Transferrin (Uibc and Tibc) those levels are both within the normal reference range. The lab work was drawn the same day as the Ferritin Serum that was drawn.
Here are the results that I was able to pull off of the online patient page for my lab:
Test Low Normal High Reference Range Units
Iron Saturation 5 15-55 %
Iron, Serum 16 27-159 ug/dL
Uibc 321 131-425 ug/dL
Iron Bind.cap.(Tibc) 337 250-450 ug/dL
I have been treated for H. Pylori several years ago. It has not been looked into since.
I will be calling my general doctor tomorrow morning to begin the process of getting genetic testing done. I think that is a very good recommendation, thank you.
Do you have any other suggestions or tests that I have not mentioned that might be of help? I have had many different scans/imaging done. My next step imaging wise is going to be a PETSCAN. My hematologist just recommended it this past week. I also am planning on bringing a new Immunologist and Rheumatologist on board as well.
I was reviewing my labs that have been ordered, and as far as the Transferrin (Uibc and Tibc) those levels are both within the normal reference range. The lab work was drawn the same day as the Ferritin Serum that was drawn.
Here are the results that I was able to pull off of the online patient page for my lab:
Test Low Normal High Reference Range Units
Iron Saturation 5 15-55 %
Iron, Serum 16 27-159 ug/dL
Uibc 321 131-425 ug/dL
Iron Bind.cap.(Tibc) 337 250-450 ug/dL
I have been treated for H. Pylori several years ago. It has not been looked into since.
I will be calling my general doctor tomorrow morning to begin the process of getting genetic testing done. I think that is a very good recommendation, thank you.
Do you have any other suggestions or tests that I have not mentioned that might be of help? I have had many different scans/imaging done. My next step imaging wise is going to be a PETSCAN. My hematologist just recommended it this past week. I also am planning on bringing a new Immunologist and Rheumatologist on board as well.
Brief Answer:
PET scan might help to see the activity of bone marrow.
Detailed Answer:
Hello Mia,
Thank for writing back to me with additional information.
Your serum iron and saturation are very low but the binding capacity is not proportionately increased relative to the deficiency status. In pure iron deficiency, when the serum iron levels go down and saturation goes down, the iron binding capacity goes above normal.
All this while you are being given iron supplements intravenously, which is rather odd.
Immunologist and Rheumatologist will be helpful, and you must continue your care under the hematologist, get the PET scan done, that will inform us about the status of bone marrow.
As you are well aware by now, your case is not straightforward, it does need multidisciplinary approach and careful elimination of common causes while simultaneously maintaining your nutritional and hemodynamic status.
Please proceed as per your hematologist and do talk to a geneticist, and keep me posted about your progress.
I hope this will help you further.
Best wishes.
PET scan might help to see the activity of bone marrow.
Detailed Answer:
Hello Mia,
Thank for writing back to me with additional information.
Your serum iron and saturation are very low but the binding capacity is not proportionately increased relative to the deficiency status. In pure iron deficiency, when the serum iron levels go down and saturation goes down, the iron binding capacity goes above normal.
All this while you are being given iron supplements intravenously, which is rather odd.
Immunologist and Rheumatologist will be helpful, and you must continue your care under the hematologist, get the PET scan done, that will inform us about the status of bone marrow.
As you are well aware by now, your case is not straightforward, it does need multidisciplinary approach and careful elimination of common causes while simultaneously maintaining your nutritional and hemodynamic status.
Please proceed as per your hematologist and do talk to a geneticist, and keep me posted about your progress.
I hope this will help you further.
Best wishes.
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Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
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