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Old 04-28-2011, 06:57 AM   #1
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Very long, yet very desperate!! Pernicious anemia, b12 def., iron def. anemia

Ever since I was a baby, my hemoglobin has been slightly low. My mom was told to increase my iron rich foods. However, out of all 8 of her children, I was the only one with this issue.

My childhood/adolescence was spent always feeling tired, getting headaches, and feeling detatched and out of it. I always seemed to suffer with vertigo, though I just learned of what that meant about a week ago. (My parents, having had 8 kids were not able to take us to the doctor, so I was never followed up with a pediatrician other than just getting vaccines for school. All ailments were treated at home unless an ER visit was necessary.)

I got married at 18 years old and since hubby had health insurance, I started going to the doctor to figure out why I was not able to get pregnant, why I was so moody, etc. Years and years of testing and being passed along from doctor to doctor resulted in feeling as though I was a hypochondriac! I suffered with intense moods, irregular menstrual cycles, constant headaches, a huge weight gain that happened very quickly, and depression that didn't respond much to medication. During this time, I learned I was allergic to topical sulfa (silverdene for wounds burned my skin off) and also learned that I could not tolerate alcohol. I would get flushed immediately, feel hot all over, get a headache all within a few sips of any kind of alcohol. I just figured I was a light-weight and never liked the taste of alcohol anyway, so never really thought much about it until learning that this is a sign of sulfite allergy just recently.

Almost 7 years ago, I had gastric bypass surgery to lose the weight and to aid in our desire to get pregnant. I was told once the weight was off, I'd be able to get pregnant. A year after the gastric bypass surgery, I was pregnant (with permission from my surgeon and OB/gyn). I suffered a miscarriage, was pregnant again about 6 wks later. Carried to term, waited 4 months and then tried again to get pregnant. Got pregnant on first attempt. Carried to term and tried again to get pregnant when she was 8 months old. All of these pregnancies were planned and we consulted with our surgeon and ob/gyn to make sure it was okay to get pregnant. So, when my last child was born, I had a 2.5 yr old, 1.5 yr old, and a newborn...plus our 6.5 yr old that we successfully conceived prior to my gastric bypass surgery.

From the time my first child was born until now (a period of 8.5 years), I've endured 9 surgeries. All bloodwork was relatively normal, just a slightly low-normal hemoglobin. I had been taking all my vitamins since having the bypass surgery, so my levels were apparently fine. About 3 years after the bypass, I started having loss of feeling in my toes. I thought it was from wearing tight shoes, but my primary doctor thought a b12 test was in order. This was the first time I had this test done...ever.

It came back that I had a b12 level of 192 and I was told I needed to take b12 injections. I had been taking b12 sublinguals up to this point, so it was weird that I had a b12 deficiency, but was told sometimes gastric bypass patients don't absorb the sublinguals. It was deemed that the deficiency was related to the gastric bypass and I never questioned that.

Move on another year or so (4 yrs post gastric bypass and pregnant with my last child) and about 3 months into my pregnancy, the fatigue was overwhelming. Until this time, I didn't realize I was suffering with PICA pretty severely. I had clearly been suffering with it for some time, especially during my pregnancies which had been the majority of the 2.5 previous years to this point. I was eating more ice than my ice maker could make along with a 10lb bag of ice in addition to this. I told my ob (new one because we moved to a different state) and he said all women are anemic. I mentioned the horrible headaches and intense ice chewing and he made the nonchalant statement that maybe my headaches would go away if I stopped eating all that ice! I also craved Pinesol, the smell of tires and tar, etc. I never ate anything like those items, just the ice, but I would go to Sam's just to stand and inhale the smell of their tire department! Something WAS NOT RIGHT! My ob did not bother to test my iron levels, so about about 6 wks before my last child was due, I went to a primary doctor to be tested. He tested my iron and it was very low and had me start a prescription iron pill with other vitamins added. (Up to this point, I was taking 2 multivitamins a day that had additional iron and folic acid, 4 calcium citrate w/ vitamin D, and my b12 sublinguals). I ended up going into labor for the first time ever 3 weeks early (this was to be my 4th c/s). They did a c/s and I was later visited by my ob/gyn's associate that told me my iron levels were extremely low (5.9 hemoglobin!) and that I was to stay on the prescription iron pill. No transfusion, nothing more done.

This was the beginning of the last very long and exhausting 2.5 yrs. The doctor that gave me the prescription iron pills tested my b12 levels a few months later and, again, my b12 was low. He said I was to have monthly b12 injections. After going into his office to receive them for about 4 months, they said I could start giving them to myself at home to avoid having to go into the office with 3 babies every month. He also felt my iron wasn't responding as well as he hoped with the script iron, so he sent me to a hematologist.

The hematologist felt it was time to start giving iv iron infusions a shot. So, I went through 8 weekly iv iron infusions that were very exhausting and painful. Bone pain, muscle pain, felt like death 5 out of 7 days a week. After the 8 iv iron infusions, my ferritin DROPPED! No explanation, not idea why, no plan of action other than to keep doing more iv iron infusions. Well, with 4 little kids, there was no way I was going to continue the infusions when they were not helping my issues. So, I continued my b12 injections, increased my iron pills and struggled every single day just to make it. I was now in extreme muscle pain, constant and debilitating headaches, non-stop dizzy and inability to focus, plus I was now starting to experience memory problems. I had what also appeared to be very bad postpartum depression and wanted to walk out on my family many MANY times. I wanted to leave my husband, I felt like garbage all the time, I was a mess. My primary doc said it was time to see a psychiatrist for better anti-depressants. The psychiatrist changed my anti-depressant and also said since I had focus issues, difficulty staying on tasks, had problems concentrating, etc, that I was likely to have ADHD as well. This was actually something I thought was likely, as my oldest child has both ADHD and Asperger's syndrome (mild autism) and I saw a lot of the tendencies that got him those diagnoses in myself and had since I was a child.

I am SO sorry this is so long! But, I think these things add to my problems.

Anyway, I have now been on mood stabilizers, anti-depressants, Adderall, etc to try to help. I've seen minimal benefit from all of this for the now almost 2 years they've been treating me. (Again, I've still continued by b12 monthly injections) but now the iron deficiency anemia I've been diagnosed with is getting worse.

About 4 months ago, my psychiatrist said he felt my other doctors were missing something. He ordered a bunch of blood tests and my b12 came back a little low. I think it was like 320 or so. He said this was not good, especially considering that I'm on monthly injections. So, I took his results to my new primary care physician (an internist) and she did a further iron study. Now, my ferritin level had dropped to 3, my hemoglobin was 9.6 and my iron saturation was 3%. I was told to have a endoscopy and colonoscopy to rule out gi bleeding. Had those done and nothing was found. I don't have heavy periods, so there is no explanation as to why my iron levels are not getting better. Went back 3 wks later for more bloodwork. Now my ferritin had dropped to 2, my hemoglobin was now 9.2. She wanted me to go back to the hematologist, but I haven't because I don't want the iv iron infusions until there was some reason to believe they would work. They carry a lot of health risks and since they hadn't worked before, I wanted to rule out other issues first.

I asked to be referred to a rheumatologist since I had heard that they dealt with autoimmune issues and I was experiencing even greater problems. Now my skin has been breaking out in acne/ulcers, I've become hypersensitive to many meds and now foods (sulfa, sulfur, sulfates, and sulfites in particular!), exhaustion beyond words, I have constant low grade fevers, I'm nauseated all the time, my vitamin D level is low despite living in south Florida, my b12 remains low even after having 4 weekly injections (then was told to wait a month and come back for bloodwork. The test revealed it was still about 320) Was told to go back to monthly injections, despite not having an increase from the 4 weekly injections. I was switched to a different prescription iron pill and told to give it a couple of months. No benefit. I'm now getting muscle twitching in various places, especially my lower eyelid. Also, in the last couple of weeks, I've been experiencing styes developing on my eyelids every few days. This is something I've never experienced other than on rare occasion in the past. I also have swollen lymph nodes in the back of my head and sides of my neck. I just saw the rheumatologist for the first time a couple weeks ago and he diagnosed me with fibromyalgia and ordered some bloodwork. I went and had the bloodwork done and was called about 5 days later asking me to have a few more blood tests done. The anemia was concerning to the doctor and he wanted a few more tests checked.

So, yesterday I went into his office to pick up the lab orders. I decided to write down the names of the labs he was asking me to have done and one of them was something I had never seen before. Most were the typical iron studies, folate, ferritin levels that I am used to having ordered, by this other one was called a methylonmia acid test. I have to go get the bloodwork done sometime today or tomorrow, but last night I decided to research this particular test to see why he might be ordering it. Evidently it is ordered to determine pernicious anemia. I have seen that type of anemia many times in my quest to find out what might be causing my iron deficiency anemia, but because it occurs with macrocytic cells and mine are microcytic cells, I have never considered it. Also, since my b12 has always been assumed to be a problem caused by my gastric bypass and I've always appeared to have a slight iron deficiency even prior to my bypass, it was never someting I considered and apparently, neither have any of my other doctors...including the hematologist.

When I researched pernicious anemia, I felt immediately sick. I have practically every single symptom and not in a mild way. I'm losing feeling in many parts of my body and experiencing extreme nerve pain throughout as well. I have felt like I've been slowly dying every single day for over 2 years and the doctors all laugh it off when I tell them this. They assure me that I'm not dying and that this is just the result of iron deficiency anemia and trying to take care of 4 young kids.

If you made it this far, I cannot tell you how much I appreciate it! Now, my concern and question lies in this. I have microcytic cells, low red blood cells, high platelets, b12 deficiency, vitamin D deficiency, and I'm sure other problems as well. My white blood cells have always been okay. I am in chronic pain. I take about 16 extra strength tylenol just to get through my day and that isn't even working!

I'm fairly certain that after reading the info about pernicious anemia that I've had this issue since being a baby. Perhaps, before I had the gastric bypass I was taking in enough b12 through food since I was eating so much (I was quite obese). I was able to live semi-normally with mild symptoms that obviously were not detected or of concern to any of the doctors I went to. However, once my body was no longer able to consume large amounts of food, the deficiency became more apparent, especially with the drain of 3 pregnancies back-to-back.

So, if I do have pernicious anemia, my question is how did I come to have microcytic cells and severe iron deficiency anemia? Is it because the b12 deficiency has gone on so long that now my iron levels became deficient? Could my vitamin D deficiency be also explained by this? I've been taking vitamin D supplements with calcium citrate for almost 7 years, plus I live in south Florida, yet I've been vitamin D deficient for 5 years now.

The methylanomia acid test appears to be also called an MMA test. I just gave myself my b12 shot about 5 days ago, so will this affect the outcome of the MMA test? My rheumatologist did not tell me to fast for my test, yet online I've seen that one should fast for this test. I can go have my blood drawn today, but I've already had something to eat and drink. If I should fast, I would rather wait until tomorrow to get a more accurate test result. But one thing is for sure, I feel I am so very close to finally getting a correct diagnosis that I don't want to mask it by mistake!!

Again, sorry for taking so long. My brain is always running in circles, but by typing this out, I can also now print it to help myself remember the timelines and issues.

I feel like I'm dying. I really and truly do. I cannot wait any longer for doctors to keep missing what is causing all of this. Please, if you can help me to understand what is going on, I pray I will find a cure instead of only getting treated of symptoms. I have 4 kids that need their mommy and I'm quickly going down hill.

Also, I have always had a fast heart rate (over 100 resting), getting heart palpations now, having problems now breathing, skin crawling sensations, horrible horrible headaches that sit at the base of my skull/neck, painful swollen nodes behind my ears, have become allergic to even wearing my 14k gold earrings over the last couple of years, recent recurrent styes on eyelids, muscle twitching, severe pain all over, severe sciatic like pain from right bum area/hip/behind thigh and knee, muscle spasms, dizzy, difficult seeing despite no problems per eye doctor, hair falling out even as a teenager, thin fingernails that peel, horribly painful acne like sores on my face and on chest, buzzing in my ears with occasional loss of hearing for a few minutes at a time, horrible headaches in my face (behind my eyes/cheeks) but no sinus discharge, terrible vertigo, can't sleep at night for more than a couple hours at a time, etc. I'll add other things as I think of them just to help myself keep tabs on all of these symtpoms.

Thank you so much in advance if you can help me!

 
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Old 04-28-2011, 05:17 PM   #2
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Re: Very long, yet very desperate!! Pernicious anemia, b12 def., iron def. anemia

Is it possible to have the gastric bypass reversed?
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Old 05-04-2011, 02:10 AM   #3
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Re: Very long, yet very desperate!! Pernicious anemia, b12 def., iron def. anemia

Wow! They have taken a very long time to give you a proper work up. I recently switched doctors because my former doctor was useless. A few weeks after meeting her and initial physical I became extremely fatigued to the point I fainted several times over a three day period (I fainted as I checked into the ER and several times the next two days). Despite fainting I had to insist that they try to figure out what was wrong with me. They hospital just wanted me to go home since my heart and lungs are working fine. Like that's all there is to a person: a heart beat and respirations. They did some tests in the hospital, Mysthenia Gravis and others. Everything coming back negative. They shoved me into a nursing home to get rid of me. Luckily, I gained enough strength to be allowed to go home. I'm still not home yet, I'm staying with my honey since I have days I can't hardly pour a glass of water and carry it.
Let me know how your tests come out, I hope they find something. It sounds like we have similar problems. Often I have decreased feeling/numbness of loss of feeling in fingers and lips and nose. For about a month, when I woke up in the morning I am numb from elbow down and thigh down. I think that is fading now though. I've had the problems with my lips and nose for years, but they dismiss them all the time. No doctor wants to deal with it. I'm so angry that nobody checked my B12 levels when I first started having the numbness problems twenty years ago. The numbness in my hands though, that is troubling, because at times it is very hard to get things open or hold on to things. I have some problems with weakness in one hand so the numbness just makes it worse.

What do your hands feel like? Numb and tingly? Do you have numbness anywhere else?
Mine just feel like they felt when I had lost a lot of fluids from a severe stomach flu. Like they aren't getting enough blood flow. It takes more effort to do things and they are less sensitive. The problem with my hands and forearms started with the fatigue and then my legs started getting involved too.

I will be going to get the blood tests tomorrow. I saw a Neurologist on Monday for my involuntary movements issue which has been getting worse the last couple years (my previous doctor wouldn't refer me for it!!). She was very thorough and wants to do blood tests for some rare disorders that could cause movement disorders and also any disorder that could cause the fatigue and movement problems. I like how she thinks of the body as a whole and not just concerned with neuro things.

I also have problems with food allergies, vertigo and I'm very motion sensitive. I trigger (convulse) to strobe lights and other flashing things. Since I have all these other issues, I don't get too anxious about the fatigue. I've known something is not right for a long time, like you, I wish they would have started sooner before I got this sick. Don't you wish they would just listen the first time? I hate how specialists really don't listen well until your third of fourth appointment. Initially, they just want to say, this is not my department and bat you back like a tennis ball. When I have to keep coming back because the problem is not better, then they pay attention. Ugh!

I hope you have good, responsive doctors now. I seem to have some great ones now. Especially my new internist!

 
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Old 05-11-2011, 06:37 AM   #4
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Re: Very long, yet very desperate!! Pernicious anemia, b12 def., iron def. anemia

Happylittlefam: You poor thing. I've only been experiencing my symptoms for 6 months. I've had such a healthy life (I just turned 44). If it weren't for the arthritis symptoms I've experienced over the last 6 months and my injured shoulder and some second half of the day fatigue, I never would have gone to the doctor at all. I hadn't been to the doctor in over 10 yrs (for ME that is - I take my kids for whatever they need). I should have gone for "well visits" at least every couple or few years is my lesson learned now. My low iron and hemoglobin probably would have been caught sooner, my fibroid tumor might have been found when it was much smaller (now I have to have a hystorectomy because the tumor is so big and it's the cause of my anemia). Have you had an ultrasound to check for uterine fibroid cysts? I know you said you don't have heavy periods but they do live off of your blood supply so maybe you are experiencing blood loss from those and haven't experienced the heavy periods YET. Just a thought since that is what my experience is that's going on right now.

I'm worried about going into surgery with my low blood pressure, low hemoglobin, ferritin and other dangerously low levels but Dr. tells me that it's more dangerous for me to keep losing blood because of this tumor inside of me... and that my levels will not go up until we get it out... basically because my body can't 'make' new cells and hemoglobin fast enough to keep up with my blood loss.

I pray you have some relief soon and answers. I am sure that you will not need your ADHD meds or any of those other similar meds as soon as you get your blood taken care of. Best of luck and keep us posted!

Michelle

 
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Old 05-12-2011, 06:25 AM   #5
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Re: Very long, yet very desperate!! Pernicious anemia, b12 def., iron def. anemia

Hi Happy,
You should have had loading doses of B12. I didn't and I did not feel better until I switched doctors who then did the loading doses and let me inject weekly.... I felt so much better!

Low folate and PA go hand in hand, just FYI. Your folate levels can drop quite suddenly or go up quite suddenly. As a precaution, my doctor has me take 400mcg of folate (folic acid) daily and it has helped with my vision and nerve function. PA and ferratin issues also are related so I'm not surprised at your levels. Same with low D.. I had very low D levels, I didn't even register on the chart it was so low. I was taking 8000 iu daily and it took about 2 years to get up to a low-normal level. I'm taking 5000iu currently and will be tested later in the year to see if I've gone up anymore. Unless you are out in the sun for hours and hours, you don't absorb that much D and if you are severely deficient, you'll need a high dose supplement. PA also causes you to have absorption problems with ALL vitamins...

I have to say your story is SO familiar... there are many people walking around quite ill, yet a simple vitamin injection makes a world of difference. It's quite shocking to hear that most GP's don't include a B12 test when doing routine bloodwork

When I was diagnosed, the hematologist was very surprised... said this is an "old persons" disease, I was 40, hardly old. I felt old though I too feel as though I've had this disease since birth, I've always felt sluggish and fatigued. My parents always made me go to bed at 7 so I could get more rest, yet throughout my life I never felt rested even after being in bed 12 hours. I could nap almost immediately after getting out of bed...

Your heart palpatations may be caused by low magnesium... have that checked. Your last paragraph of symptoms can all be PA related and the anti-depressants do not help either. PA can cause depression (been there!) and once it's managed the depression will ease up. Maybe request another endoscopy to check for PA? I had blood tests and showed anti-bodies so I didn't need the endo....
I hope you get the answers you need SOON... you should not have to keep suffering.

Cory

 
Old 05-12-2011, 02:39 PM   #6
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Re: Very long, yet very desperate!! Pernicious anemia, b12 def., iron def. anemia

Well, I saw a new hematologist today and I have to say, I've been crying pretty much non-stop! I've never yelled at a doctor before, but I couldn't resist today. I'm so very sad and discouraged.

After waiting an hour to see him (which I would do in a heartbeat to find the cause of all my issues!), he basically said that I have mild iron deficiency anemia and that at my hemoglobin level of 9.4, I shouldn't even have any symptoms. I was so upset and told him that having a 9.4 despite the amount of iron I supplement with every day (and for the last 7 years!) is NOT mild. He was looking at me on paper, not me the patient sitting in his office. He also said my b12 is normal because it is 320. AGAIN, I argued that a b12 level of only 320 after being on weekly b12 injections and also taking 2500mcgs of sublingual b12 every day is NOT normal.

He said he recommended we do iv iron infusions again and then see if they work this time. I told him that I would like to pursue a bone marrow biopsy because I think my main issue is NOT the iron deficiency, but more of a blood disorder or disease that the doctors are missing. The iv iron infusions made me very ill and I'm the mother of 4 small children. I cannot be sick 5 out of 7 days a week for another 2 months like the last time I did the iv iron infusions. He said that a bone marrow biospy was too risky and that he wanted to do the iv iron or he could refer me to Moffitt Cancer Center in Tampa, FL which is more than 2 hrs from me. I wake up fearing how I'll be able to make it through the day until I can put my kids to bed at night, but he wants me to drive 5 hrs roundtrip to get another opinion?! I'm so angry! And for once, I let a doctor know it!

I have almost every single symptom of mast cell disease (systemic and skin) and there are only 2 ways to determine it. There is a blood test that carries a high rate of false results or a bone marrow biopsy. I told him that a bone marrow biopsy made the most sense so that we could find out what is causing all of my deficiencies and they could really SEE what is going on with my red blood cells. As painful as I know a BMB would be, I am desperate to find a cause for why I'm ill and in pain 24hrs a day every single day!

He had the gall to tell me that my iron anemia had nothing to do with all the pain I feel in my muscles and tissue! I asked him how he, a hematologist, would argue the lack of oxygen in my red blood cells from the anemia wasn't damaging my muscles and tissues (AND BRAIN!) due to being robbed of oxygen! Why do we have to do the work for our doctors? He actually told me that we should both do research to come up with a possible cause and discuss them when we meet again. Seriously?! Why go to him if I'm the one continuing to do the research?

I'm so sorry, but I had to vent this out. I don't know what to do. I can't keep living like this day in and day out. I'm so sick of doctors assuming that all of my deficiencies are related to my gastric bypass surgery when I tell them over and over that I've been anemic since I was a baby. And even if my gastric bypass was a possible cause for the iron deficiency, why would my levels DROP after getting a series of 8 iv iron infusions? IV iron bypasses my gut obviously because it's being pumped directly into my veins, yet since they cannot come up with a reason, they insist it's the gastric bypass. Clearly, if my body isn't absorbing the iron from an iv, I might have an enzyme problem or a different underlying blood disorder.

I'm at yet another roadblock/dead end. I am losing faith that a cause will ever be found and I'm going to end up dying because they can't help me restore these essential vitamins and minerals.

 
Old 04-19-2012, 06:40 AM   #7
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Re: Very long, yet very desperate!! Pernicious anemia, b12 def., iron def. anemia

I know it sounds crazy but I had the same symptoms for 2 yrs and thought I was dieing. They tested for MS but I had 4 small cysts on MRI not specific for MS and no marker on spinal tap. Ended up being Celiac disease; intolerance for wheat, rye,barley..and in my case milk products and sugar. I had PA as well caused by malabsorption syndrome of gastric bypass and Celiac. All I can say is..food allergies can make you feel like your dieing. Research Celiac (auto immune) or just gluten intolerance. I eliminated wheat, rye, barley and milk and sugar and it's a long road but worth researchng anyway. My iron is still a little low but will start working on that as soon as my stomach calms down. Good luck.

 
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