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  #1  
Old Wed Aug 15, 2012, 09:01 PM
Friedbrain Friedbrain is offline
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Question Does this sound like AA?

I've been searching for examples of clinical data to compare mine with, in hopes of trying to figure out what my bloodwork means. Hopefully someone here can give me some input! I would be SO grateful!

I've experienced dizziness, postural hypotension, tachycardia from light exercise (like walking up stairs), etc on and off for a few years now. Twice (once 2 wks ago), I've even experienced significant brain fog, and I'm only in my 40s. Since I have low blood pressure, my famdoc recently suggested these symptoms may be because my brain is not getting enough oxygen; and that this problem may even go back 10+ years, to when I started having seizures of unknown origin. During that visit, she ordered bloodwork, which I've been reviewing this past weekend. In it, I noticed several kinda shocking results but then when I compared them to past results, I'm noticing more of a pattern than a sudden change. When I saw the low RBC, I started wondering if my problems weren't a combination of low RBC x low bp......but then I noticed the significantly low wbc and borderline low platelets, and started wondering/worrying more.....!

wbc: 3 at begin of month (3.7 in March: during this visit, subset counts were made. Only 1440 neutrophils, which is 42%, per my calc, with 49% lymph. I was at the ER on Sunday for chest pains maybe due to inflammation, and my wbc was 5.7, the change being 3.3 neutrophils.....?)
rbc: 3.67 at begin of month, 3.85 Sunday, 3.64 in March
MCV on all three times consistently HIGH (102, 98, 102)
MCH on all three times consistently HIGH (34.9, 34.9, 34.7)
Hct consistently 37 (lowish)
Hemoglobin 12.6-13.4
Platelets: 146 at begin of month, 181 Sunday, 190 in March
An ESR Westergren was *2* mm/hr (I've seen reference range of 0-20; otoh, I've seen a calculation suggest that my age and being female, it should be around 25?!)
Alk Phos is usually very low, but down to a 30 at begin of month (L); 38 in March and also last Oct. I read that Alk Phos is produced several places, one being in the bone marrow, so low may suggest bone marrow problem

Also in March and August:
low ttl protein (6.2)
kinda low albumin (3.9 twice)
pretty low globulin (2.3 twice, 2.2-3.9 "wnl")

The ER measured two new tests that may or may not be relevant, and but I don't have reference ranges:
mpv: 9.2 ......I've seen different ref ranges for this, so don't know what to think
Anion gap: 4 (lowish, which may be related to lowish protein, which would mean?)

I have autoimmune diseases such as Hashimoto's, Sjogren's, and antiphospholipid Abs; am on cortef for adrenal insufficiency (but am trying to wean off the steroid, which my new docs think may have also helped in the past, in part, by inhibiting inflammation; still, the low wbc, rbc, and platelet values seem pretty consistent over time)

Any thoughts? Could this be diet related? I'm on a pretty restrictive (self-created, in order to simply feel good) diet because eating a normal meal or one heavy on carbs causes me to either fall deeply asleep (crash) or experience tachycardia. I'm ok on the diet (I thought), but could this be causing an across-the-board decrease in the above values? Or does this sound like some kind of chronic aplastic anemia?

I've had health problems for about ten years (starting with the seizures and neurological problems) that doctors haven't been able to figure out, which is why I do a lot of my own digging, and tracking of my health. Any suggestions, input, re-direction, etc. would be appreciated! Thank you!
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  #2  
Old Wed Aug 15, 2012, 09:53 PM
Neil Cuadra Neil Cuadra is offline
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Hi Friedbrain.

Yours is such a unique situation so I can understand why it's been hard for the doctors to find answers. As a layperson I'm even less qualified to take a guess, but I can tell you a bit about aplastic anemia.

If your brain fog is due to a lack of oxygen, then you can start at the destination and work back towards the source. If there's a lack of oxygen in the brain, is there a lack of oxygen in the blood? If there's a lack of oxygen in the blood, are there insufficient red cells to carry that oxygen? If there are insufficient red cells, are they being destroyed or are they never in the blood stream in sufficient numbers to begin with? If there are an insufficient number of red blood cells to begin with, are there a sufficient number of immature blood cells in your bone marrow, but they aren't making it into your blood stream, or are there insufficient blood cells in your bone marrow to begin with?

The last condition is aplastic anemia. To determine if you have aplastic anemia a hematologist would do a bone marrow biopsy and look for the tell-tale lack of immature blood cells.

However, that story doesn't exactly fit your description. With a hemoglobin between 12.6 and 13.4 you are in the normal range for a woman, even if your blood counts tend to be on the low side of normal.

High MCV can be due to a number of causes, including bone marrow conditions such as myelofibrosis, but there are other causes unrelated to bone marrow. There's a good summary at MedFriendly. They also have a good summary about MCH, which for you seems to be only slightly elevated.

Have you had your vitamin B12 and folic acid tested? If you haven't, that may be more likely to lead to answers, or rule out possibilities, than looking for aplastic anemia when the symptoms don't quite match. Bone marrow biopsies are very revealing for bone marrow problems, but you don't want to undergo one without strong evidence that there IS a bone marrow problem.

Although diet issues can produce symptoms that affect how you feel, diet isn't going to cause your bone marrow to malfunction.
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  #3  
Old Wed Aug 15, 2012, 10:23 PM
triumphe64 triumphe64 is offline
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Your case is confusing enough that I would suggest that you see a good hematologist at a center of excellence or teaching hospital.

There is a rare blood condition where about half of the patients have autoimmune diseases such as Hashimoto's and Sjogren's that you mentioned. I am not going to give it a name here, but a good hematologist can identify and treat it.

I know the frustrations you are having, but getting a proper diagnosis will put you at ease and on the way to proper health.
__________________
Dallas, Texas - Age 77 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #4  
Old Thu Aug 16, 2012, 02:27 AM
dfantle dfantle is offline
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Wink

I agree with "Triumph" that a visit with a good hematologist at a center of excellence seems like a really good idea. If you respond with the nearest large city to you, folks on this site may be able to make a good recommendation for you.

After reading your symptoms, I wondered if your Dr has ever run the following blood tests: Freelite Chain, Creatinine, BNP and Troponen. Also have you had any bone marrow biopsies? Rare diseases are often very difficult to diagnose as they're are a number of diseases where the symptoms could lead Dr's in a number of different directions.

Best,
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Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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  #5  
Old Thu Aug 16, 2012, 10:20 AM
Friedbrain Friedbrain is offline
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Thank you so much for the quick replies and informative input! It is very helpful to rule stuff in and out, and or consider other things than to continue on down the wrong path! Some thoughts/comments:

Since your RBCs are low, does your body do any counter-regulation? I thought that maybe the elevated mcv and mch were my body's way of trying to up the hemoglobin that circulates (due to lower RBC#). My bilirubin is lowish normal (.3 and .5, with .2-1.2 wnl), which I think means no increase in RBC destruction, and maybe is lowish because of the fewer number, no? All other kidney/liver function tests wnl (except the low alk phos-do you have low alk phos values?).

My Vit B 12, done last week, was 454 so wnl. Had troponin-I done at the ER on Sunday-neg. I learned that gamma globulins are made in both the liver and by lymphocytes&"plasma cells", so a total globulin level could be low if gamma globulins are selectively low. Anyone else have this? Since I've had low results in Mch and August, I wonder if it's worth getting the prtn electrophoresis done to quantify the globulin types. I do not restrict my protein intake-in fact, try to eat a lot of protein to offset the carb effect, so I shouldn't have low protein.

Still, your cryptic suggestions made me go searching again, and maybe lupus is fitting better and better as time goes by. I was diagnosed with "antiphospholipid syndrome" about 20 ys ago because I had some but not all criteria for lupus. But with my most recent ER trip suggesting inflammation in my lungs (causing the chest pain), and this other stuff....is that what you're thinking?

My doc wants me to increase my Vit D intake for several weeks and re-test (the Vit D was not low, at 38 (30-100 wnl))-she didn't say anything about the anemia, but I'm trying to eat healthier.....but what I'm hearing is that you do think that these results are worth following up with a specialist? I know bloodcell values are all borderline low/low, but it seems chronic and across the board
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  #6  
Old Thu Aug 16, 2012, 11:45 AM
Marlene Marlene is offline
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Are you currently supplementing with B12? A reading of 454, even though it is in a normal range, is not optimal especially in the presence of blood and neurological symptoms. It should be above 500.

Nutrients key for blood production are B12, Folate, B6, copper, iron and zinc. Supporting ones include magnesium, omega 3 and vitamin D. Get these checked out as well as a test for H.Pylori. This can help rule out things that effect blood production.

You do have a lot going on. How restrictive is your diet? Are you getting a good balance of protein, good fats and healthy carbs (vegetables & fruit).

Since carbs are a problem I would look into gluten sensitivity/celiac disease. If you are not eating gluten, the test will most likely be negative. Gluten is in so many things. Even medicines.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #7  
Old Thu Aug 16, 2012, 02:30 PM
Lbrown Lbrown is offline
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Hi there,

"dizziness, postural hypotension, tachycardia" - not to make light of these symptoms but these are typical symptoms in many different autoimmune diseases. If you were so inclined, you could do some research into the Marshall Protocol. I'm not saying you should or shouldn't do it, but there are many people using it for many different AI diseases including yours.

Good luck with whatever you decide to do, chronic disease sucks.

Deb
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  #8  
Old Thu Aug 16, 2012, 05:30 PM
triumphe64 triumphe64 is offline
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Fried,
You are not wrong in searching for answers on this board.

There is evidence that autoimmune diseases relate in some way to all of the illnesses discussed on these boards. I had a chart showing this but was unable to copy it without copying 27 more pages.

As mentioned before, if you can tell us where you live, there are many of us who know good resources.
__________________
Dallas, Texas - Age 77 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #9  
Old Fri Aug 17, 2012, 04:44 PM
Friedbrain Friedbrain is offline
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Thank you for the feedback. My diet is "low carb": I try to not eat bread and pasta. So, bunless meat, few sandwiches, etc. I just don't mix up my meals that much. Same breakfast every day, mostly same lunch every day. I'm going to take vitamins and eat a better variety over the next few weeks and see if that will increase my WBC, RBC, platelet and protein values (doc sent a script for me to re-test at that pt).

As an aside, when I had the early Aug bloodwork, my WBC was 3 and my neutrophils were low; a week later, in the ER (with what today's doc supported was inflammation in my chest-ziphoid process joint), my WBC was up to a whopping 5.7 with the only difference being a doubling of my neutrophil count (to make it wnl). Shouldn't my WBC be higher?

I promise I'm not here looking for ya'll to figure out all my health issues, cuz I know that they're complicated. I listed them in case anyone *was* able to connect a dot or two, but don't expect it, if that makes sense I guess I was hoping someone could tell me if the WBC/RBC/platelet values resembled a possible chronic bone marrow deficit, since I don't really know what AA values look like.

Thank you for your input!
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  #10  
Old Fri Aug 17, 2012, 05:09 PM
triumphe64 triumphe64 is offline
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What kind of specialist do you go to?
__________________
Dallas, Texas - Age 77 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #11  
Old Fri Aug 17, 2012, 05:58 PM
dfantle dfantle is offline
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Hi Fried, I think what we may be trying to help you with is encouraging you to see the right specialist to help you assess what may be happening as your symptoms are so varied.

In my experience the conclusive way to know if there is a bone marrow issue going on is to have a bone marrow biopsy. I have had many over the years and truly the aren't as scary as they sound. You can even request conscious sedation for them which I've now decided is my preference. You may be a little sore after but I've often dined out with my family or friends just a few hours after with no issues.

Some on this site have had to see a few different docs over the years before a conclusive diagnosis. Some internist's or general practitioners either have had experience with or have been trained to pick up subtlties of different autoimmune diseases while others have not which is why we're suggesting you see a highly trained Hemotologist in a large city where they treat a lot of patients.

I know of a number of people in my community who have been misdiagnosed numerous times by internists and even organ specialists (heart, liver, kidney, GI...) before finally seeing a very experienced Hemotologist who diagnosed autoimmune issues or blood disorders as the cause. This then means the condition can be properly treated-either by diet or medications.

We're only suggesting you share the nearest large city so we can offer suggestions of who might be good to see, if you'd like to do this.

Best

(excuse typos, sent from
Mobile phone)
__________________
Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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  #12  
Old Fri Aug 17, 2012, 11:47 PM
milliken2 milliken2 is offline
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Find a Good Hematologist - NOW !!!!

Fried;
My husband also has APS, as well as Leukocytoclastic Vasculitis, and now the MDS. You really need to get to a good hematologist, and possibly a good rheumatologist if you are suspecting Lupus.
A good teaching hospital in one of the major universities that has clinical practice attached would be a good idea.
What blood thinner are you on for your APS if any? Earl's platelets have been so low for the last 6 months that he only has had a few doses of Arixtra. Right now - the MDS is taking precedence. When we saw Dr. Sekeres at the Cleveland Clinic he said that the combination of the Arixtra for the APS and the Plaquenil for the LV may have been the root cause of the current problem - his MDS. But the damage is done - so we are just going to try and move forward.
Take care, and please get seen by a specialist.

Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
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  #13  
Old Tue Aug 21, 2012, 11:34 AM
Friedbrain Friedbrain is offline
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Thank you for the suggestions. I asked for direction, and you guys provided one I live in Pittsburgh, although have traveled to Cleveland Clinic in order to see an endocrinologist, so that's an option.
(PS I don't take anything for the APS, which is why the ER checked me immediately for blood clot when I was having chest pain. I'm *supposed* to take daily aspirin, but since I take so many meds already, I balk at taking more even though I get routine lectures on this. Last week scared me, so I probably should start doing it)
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  #14  
Old Tue Aug 21, 2012, 12:41 PM
triumphe64 triumphe64 is offline
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I go twice a year to see Dr. Maciejewski at the Cleveland Clinic.

http://my.clevelandclinic.org/staff_...?DoctorID=4362

He is very personable and likes to help. Don't be afraid to call his office.

Dr. Sekeres is also an option.

http://my.clevelandclinic.org/staff_...?DoctorID=4489

The AAMDS.org website has the following information on their on line learning center.

https://live.blueskybroadcast.com/bs...T=944&CAT=1031

Hopefully this will be of help.
__________________
Dallas, Texas - Age 77 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #15  
Old Sat Feb 16, 2013, 10:01 PM
LoveRapheal1 LoveRapheal1 is offline
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I would get your digestive system, liver and organs checked. I just rushed into an ATG treatment very quickly. I didn't give the condition time to reverse. I read somewhere that oftentimes there may be a root problem in your immune system that needs to be cured instead of suppressed. Many of these problems originate in the liver or digestive system. You shoud have your organs checked. You should also see a gyn doctor. My immune system is too low to check anything because my neutrophils are too low. A local hospital referred me to the GYN. I used my intuition and called my primary doctor in the city. I asked him if being checked could cause an infection. He told me that my neutrophils had to be at a certain level. So I am going to wait because at this point I am in a watch and waiting period. I hate to use the word stuck but I can't even check these things now unless it is through blood so please check with many doctors and watch the meds you take. Many things can cause this disease such as benzene or other diseases. Not to scare you...but it is true. Half the cases are unknown as to the root cause. Good luck and I will wish the best for you.
(they suppress your immune system) I am not a doctor, but I have read extensively about this disease. You should get several tests and opinions first. Good Luck

Quote:
Originally Posted by Friedbrain View Post
I've been searching for examples of clinical data to compare mine with, in hopes of trying to figure out what my bloodwork means. Hopefully someone here can give me some input! I would be SO grateful!

I've experienced dizziness, postural hypotension, tachycardia from light exercise (like walking up stairs), etc on and off for a few years now. Twice (once 2 wks ago), I've even experienced significant brain fog, and I'm only in my 40s. Since I have low blood pressure, my famdoc recently suggested these symptoms may be because my brain is not getting enough oxygen; and that this problem may even go back 10+ years, to when I started having seizures of unknown origin. During that visit, she ordered bloodwork, which I've been reviewing this past weekend. In it, I noticed several kinda shocking results but then when I compared them to past results, I'm noticing more of a pattern than a sudden change. When I saw the low RBC, I started wondering if my problems weren't a combination of low RBC x low bp......but then I noticed the significantly low wbc and borderline low platelets, and started wondering/worrying more.....!

wbc: 3 at begin of month (3.7 in March: during this visit, subset counts were made. Only 1440 neutrophils, which is 42%, per my calc, with 49% lymph. I was at the ER on Sunday for chest pains maybe due to inflammation, and my wbc was 5.7, the change being 3.3 neutrophils.....?)
rbc: 3.67 at begin of month, 3.85 Sunday, 3.64 in March
MCV on all three times consistently HIGH (102, 98, 102)
MCH on all three times consistently HIGH (34.9, 34.9, 34.7)
Hct consistently 37 (lowish)
Hemoglobin 12.6-13.4
Platelets: 146 at begin of month, 181 Sunday, 190 in March
An ESR Westergren was *2* mm/hr (I've seen reference range of 0-20; otoh, I've seen a calculation suggest that my age and being female, it should be around 25?!)
Alk Phos is usually very low, but down to a 30 at begin of month (L); 38 in March and also last Oct. I read that Alk Phos is produced several places, one being in the bone marrow, so low may suggest bone marrow problem

Also in March and August:
low ttl protein (6.2)
kinda low albumin (3.9 twice)
pretty low globulin (2.3 twice, 2.2-3.9 "wnl")

The ER measured two new tests that may or may not be relevant, and but I don't have reference ranges:
mpv: 9.2 ......I've seen different ref ranges for this, so don't know what to think
Anion gap: 4 (lowish, which may be related to lowish protein, which would mean?)

I have autoimmune diseases such as Hashimoto's, Sjogren's, and antiphospholipid Abs; am on cortef for adrenal insufficiency (but am trying to wean off the steroid, which my new docs think may have also helped in the past, in part, by inhibiting inflammation; still, the low wbc, rbc, and platelet values seem pretty consistent over time)

Any thoughts? Could this be diet related? I'm on a pretty restrictive (self-created, in order to simply feel good) diet because eating a normal meal or one heavy on carbs causes me to either fall deeply asleep (crash) or experience tachycardia. I'm ok on the diet (I thought), but could this be causing an across-the-board decrease in the above values? Or does this sound like some kind of chronic aplastic anemia?

I've had health problems for about ten years (starting with the seizures and neurological problems) that doctors haven't been able to figure out, which is why I do a lot of my own digging, and tracking of my health. Any suggestions, input, re-direction, etc. would be appreciated! Thank you!
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  #16  
Old Sat Feb 16, 2013, 10:37 PM
LoveRapheal1 LoveRapheal1 is offline
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And if all else fails and you are diagnosed with Severe Aplastic Anemia (mild or moderate can be cured oftentimes on their own with the correct nutrition) then I heard that Dr. Araten is a wonderful doctor. He works at NYU. A wonderful doctor and actually has a sense of empathy for his patients. Good luck

Quote:
Originally Posted by Friedbrain View Post
I've been searching for examples of clinical data to compare mine with, in hopes of trying to figure out what my bloodwork means. Hopefully someone here can give me some input! I would be SO grateful!

I've experienced dizziness, postural hypotension, tachycardia from light exercise (like walking up stairs), etc on and off for a few years now. Twice (once 2 wks ago), I've even experienced significant brain fog, and I'm only in my 40s. Since I have low blood pressure, my famdoc recently suggested these symptoms may be because my brain is not getting enough oxygen; and that this problem may even go back 10+ years, to when I started having seizures of unknown origin. During that visit, she ordered bloodwork, which I've been reviewing this past weekend. In it, I noticed several kinda shocking results but then when I compared them to past results, I'm noticing more of a pattern than a sudden change. When I saw the low RBC, I started wondering if my problems weren't a combination of low RBC x low bp......but then I noticed the significantly low wbc and borderline low platelets, and started wondering/worrying more.....!

wbc: 3 at begin of month (3.7 in March: during this visit, subset counts were made. Only 1440 neutrophils, which is 42%, per my calc, with 49% lymph. I was at the ER on Sunday for chest pains maybe due to inflammation, and my wbc was 5.7, the change being 3.3 neutrophils.....?)
rbc: 3.67 at begin of month, 3.85 Sunday, 3.64 in March
MCV on all three times consistently HIGH (102, 98, 102)
MCH on all three times consistently HIGH (34.9, 34.9, 34.7)
Hct consistently 37 (lowish)
Hemoglobin 12.6-13.4
Platelets: 146 at begin of month, 181 Sunday, 190 in March
An ESR Westergren was *2* mm/hr (I've seen reference range of 0-20; otoh, I've seen a calculation suggest that my age and being female, it should be around 25?!)
Alk Phos is usually very low, but down to a 30 at begin of month (L); 38 in March and also last Oct. I read that Alk Phos is produced several places, one being in the bone marrow, so low may suggest bone marrow problem

Also in March and August:
low ttl protein (6.2)
kinda low albumin (3.9 twice)
pretty low globulin (2.3 twice, 2.2-3.9 "wnl")

The ER measured two new tests that may or may not be relevant, and but I don't have reference ranges:
mpv: 9.2 ......I've seen different ref ranges for this, so don't know what to think
Anion gap: 4 (lowish, which may be related to lowish protein, which would mean?)

I have autoimmune diseases such as Hashimoto's, Sjogren's, and antiphospholipid Abs; am on cortef for adrenal insufficiency (but am trying to wean off the steroid, which my new docs think may have also helped in the past, in part, by inhibiting inflammation; still, the low wbc, rbc, and platelet values seem pretty consistent over time)

Any thoughts? Could this be diet related? I'm on a pretty restrictive (self-created, in order to simply feel good) diet because eating a normal meal or one heavy on carbs causes me to either fall deeply asleep (crash) or experience tachycardia. I'm ok on the diet (I thought), but could this be causing an across-the-board decrease in the above values? Or does this sound like some kind of chronic aplastic anemia?

I've had health problems for about ten years (starting with the seizures and neurological problems) that doctors haven't been able to figure out, which is why I do a lot of my own digging, and tracking of my health. Any suggestions, input, re-direction, etc. would be appreciated! Thank you!
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