Join Date: Dec 2009
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!